ABILITY Magazine Teri Garr by ABILITY Magazine

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Volume 2007 Issue I Teri Garr

2/6/07

US $4.95 Canada $5.95

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E DITOR - IN -C HIEF Chet Cooper

M ANAGING H EALTH E DITOR Gillian Friedman, MD

M ANAGING E DITORS Pamela Johnson Jane Wollman Rusoff

H EALTH E DITORS

E. Thomas Chappell, MD Larry Goldstein, MD Karl Gross, MD

C ONTRIBUTING S ENATOR U.S. Sen. Tom Harkin (D-IA)

E DITORS

HUMOR THERAPY — Don’t Go There

HEADLINES — Ford, GE, Carlson Hotels and more

FACES OF MS — Increasing MS Awareness

MS UNDER A MICROSCOPE — Up-to-the-Minute Research

TERI GARR — Before MS and After

BRAIN ANEURYSM 101 — What You Need to Know

ALLEN RUCKER — ‘The Day I Woke Up Paralyzed’

BEST SEAT IN THE HOUSE — Rucker Book Excerpt

THE BRAIN THAT CHANGES ITSELF — Doidge MD Book Excerpt

MISS DEAF AMERICA — Chelsea Tobin

ZOO FIGHT — Disability Legal Rights Center

BLIND LEADING THE BLIND — CA Dept. of Rehabilitation

MEDIA ACCESS — 24th Annual Awards

BLOOD BROTHERS — Michael Weisskopf Book Excerpt

ABILITY’S CROSSWORD PUZZLE

EVENTS AND CONFERENCES

SUBSCRIPTION PAGE

Blind Rehab

C ONTRIBUTING W RITERS

ABILITY’s Crossword Puzzle

SENATOR HARKIN — Promoting the Wellness Act

Jim Baker Michael Bartley Harriet Cabelly Anne Finger Courtney Gale Linda Boone Hunt Deborah Max Myles Mellor - Crossword Puzzle Betsy Valnes Jacob J. Wascalus

H UMOR E DITORS Jeff Charlebois Gene Feldman, JD

W EB E DITOR

Steve Mikailoglu

G RAPHIC A RT / I LLUSTRATION

Joy Cortes Scott Johnson Steve Mikailoglu Melissa Murphy - Medical Illustration

Brain aneursym image

P HOTOGRAPHY

Prashant Gupta/FX Plume Books - Teri Garr Images GCI Group

DIRECTOR OF BUSINESS AFFAIRS John Noble, JD

MARKETING/PROMOTIONS Lisa Palmer Andrew Spielberg Teri Garr speaking about MS

San Diego Zoo

Jacqueline Bowler Dahvi Fischer Kanani Fong Kathy Hawkins Eve Hill, JD Noelle Kelly Glenn Lockhart Josh Pate Maya Sabatello, PhD, JD Jessica Tappin

PUBLIC RELATIONS JSPR

NEWSSTAND CIRCULATION John Cappello

EDITORIAL

Editorial@ABILITYmagazine.com

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ABILITY Magazine is published bimonthly by C.R. Cooper, 1001 W. 17th St. Costa Mesa, CA 92627 (ISSN 1062-5321) All Rights Reserved. Subscriptions: $29.70 per 1 year (6 issues). Periodicals postage rates at Irvine, CA and at additional mailing offices. POSTMASTER: Send address changes to ABILITY Magazine, Attention Subscriptions Manager, 1001 W. 17th St. Dept F, Costa Mesa, CA 92627; Volume 2007 Teri Garr Printed in U.S.A.

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onk if you’re going insane. There’s something about traffic that brings out the beast in me. When I want to get somewhere, I’d like to get there that day—especially if it’s just a trip to the grocery store down the street. Yeah, when you’ve got a severe hankering for a Snickers bar, the last thing you need is people on the roads impeding your quest for that caramel and nougat (whatever nougat is). Buckle up—I haven’t had my Snickers, so this may be a bitter tirade.

Traffic dictates my day. Please don’t ask me to meet you somewhere during rush hour—there are too many clowns invading the highway system. No, I won’t venture out, even if you are paying for the meal. I’m hiding in my house until the coast is clear. I like to save all my errands up for one day a month. My philosophy is, why space out your anger and rage? Traffic gives me time to think… to think about all the other things I could be doing in my life instead of sitting here, stuck on a freeway with the other morons who also are deep in thought as they pick their noses. These are usually the moments when I ponder my existence. What am I doing here? What is this all about? Tell me, Alfie. And while you’re at it, Alfie, get your slow butt out of the fast lane. With traffic, a simple nine-to-five job has now become a seven-to-seven job. The problem is that you only get paid for eight hours. Is it any wonder everyone goofs off at work? That’s right—stick it to the man for your hellish morning of rubbernecking. Changing lanes doesn’t get you anywhere faster. It does, however, give you a change of scenery. Instead of an SUV bumper you get to look at a Ford Escort bumper. Incidentally, what was Ford thinking when he came up with this crazy idea for a vehicle to get us around? Looking back, the horse seemed much simpler. I doubt horses were running people off the road, and they certainly didn’t cause sig alerts. Would it be too much to ask of the general public to just stay at home until I finish my errands? Come on, help a brother out. I know a lot of you have important things to do, but can’t those just wait ’til next year? You certainly live with that principal when it comes to preparing your taxes.

Little things could help out. Moms, drop your kids off at school on Monday mornings, then pick them up on Friday afternoons. And dads, you can help, too, by calling in sick to work a couple days of the week. Car pools were never a good idea, sitting in the car listening to some fool ramble on about politics or what colleges his kid is thinking of attending. No thanks, I’ll sit next to a smelly bum on the bus and give him a quarter if he promises not to talk to me about government conspiracies. Fifty cents if he promises not to talk at all. Traffic seems to flow smoothly whenever you’re not in a rush to get somewhere. But if you have to go, say, diffuse a rogue nuclear device, the streets are packed and you’re stuck following an old man who’s had his blinker on for the last 14 miles. Senior citizens don’t need a driver’s license at all, except to go catch that three o’clock bluebird buffet dinner. Likewise, teenagers shouldn’t be on the streets either, unless they have a job to help pay for road maintenance. And turn down that loud, banging rap music at stoplights— you’re not helping my traffic headache… Punks! Once you’ve been in the highway combat zone, road rage and drive-by shootings seem like understandably forgivable offenses. Tell me you haven’t contemplated mass murder on the beltways. Hey, it doesn’t make you a bad person. Thank God there’s commercial-free satellite radio to distract you from these yearnings to go postal. On a totally irrelevant side note, I’ve noticed that when people are in boats they wave to you with a big smile. But put these same people behind the wheel of a car and they’ll run your butt over without a second thought of hanging up their cell phone. Maybe the key to tranquility is a serene body of water–either that or the beer in the cooler. Too bad we can’t float down the 405, because this driving is driving me crazy. I need some kind of back-up to all the back-ups. Maybe I should just try to relax, mumble “serenity now” and take slow, deep breaths as I flip off the driver in the next lane. Perhaps in the future we can just think of the place we want to go and Shazam! we’ll be there. Right now I’m thinking of the Playboy mansion… Oh great, there’s a 26-man pile-up at the front door. by Jeff Charlebois “Ham on a Roll”

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PROMOTING WELLNESS FOR INDIVIDUALS WITH DISABILITIES ACT Dear ABILITY Readers, As many of you know, promoting the health of America’s citizens has long been one of my top priorities. In particular, I have advocated wellness and disease prevention, which requires access to health screenings and other services that keep people out of the hospital in the first place. As Ben Franklin wrote, “An ounce of prevention is worth a pound of cure.” However, it is often difficult for people with disabilities to access this vital “ounce of prevention.” For example, they often encounter physicians’ offices that lack accessible examination and diagnostic equipment, such as accessible exam tables, weight scales, and mammography machines for people with mobility or balance issues. The presence of these physical barriers can reduce the likelihood that persons with disabilities will receive timely and appropriate medical services. People with particular disabilities, including those with intellectual disabilities, sometimes have difficulty finding physicians or dentists who are willing to take them on as patients. In addition, health and wellness programs that aid with smoking cessation, weight control, nutrition, or fitness, may not focus on the unique challenges faced by individuals with disabilities. All of these obstacles can lead to health problems for people with disabilities–problems that often can and should be prevented. Last summer, close to the anniversary of the passage of the Americans with Disabilities Act, I introduced

the “Promoting Wellness for Individuals with Disabilities Act,” which I believe is an important first step toward addressing these problems. The bill would: • Authorize the U.S. Access Board to establish accessibility standards for medical-diagnostic equipment, including examination tables, exam chairs, weight scales, and mammography equipment, x-ray machines, and other radiological equipment commonly used for diagnostic purposes by medical professionals. • Establish a national-wellness grant that will help fund programs or activities that take into account the unique challenges faced by individuals with disabilities, helping them with smoking cessation, weight control, nutrition, fitness and health screenings that can reduce the incidence of secondary conditions. • Improve education and training of physicians and dentists by requiring medical schools, dental schools, and their residency programs to provide training that improves competency in offering care to patients with both physical and intellectual disabilities. In the coming weeks, I will reintroduce this legislation in the new 110th Congress. I look forward to your support on this important issue. Together, we can ensure that people with disabilities are neither denied access to quality medical care, nor opportunities for health and wellness. Sincerely, Senator Tom Harkin www.harkin.senate.gov

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STRONG IN WAR AND PEACE FORD SPONSORS IRAQ VET IN TRIATHLON

hen U.S. Army Major David Rozelle recently finished the Ford Ironman World Championship in Hawaii, he became the first war amputee to ever complete the grueling triathlon, which includes 2.4 miles of swimming, 112 miles of biking and 26.2 miles of running. Rozelle participated in the Hawaii Ironman thanks to co-sponsorship by Ford Motor Company’s Mobility Motoring, a program that helps people with disabilities get adaptive equipment installed on Ford, Lincoln or Mercury vehicles. The mobility division became Rozelle’s sponsor after the native Texan earned the Ford Everyday Hero award at the Ironman event in Coeur d'Alene, Idaho. There, the Iraq war veteran received a standing ovation. “Earning the Everyday Hero award is definitely a highlight of my life,” Rozelle said. Rozelle saluted as he crossed the finish line at the Ironman in Hawaii to honor and inspire other soldiers who have sustained debilitating injuries in combat. Rozelle lost his right foot to a land mine in Iraq in 2003, and later became the first amputee in modern military history to command in a war zone. In his 2005 book Back in Action, Rozelle documented how his sports-based rehabilitation program--which included skiing, snowboarding, swimming, biking and eventually running with the aid of prosthetics--helped greatly to restore his motor function after his injury. Within a year of losing his foot he was competing in triathlons. “Sports is a lifesaver,” Rozelle said. “I want to show other amputees what they can accomplish through hard work, determination and believing in themselves. It’s about setting goals and not giving up.” Still active in the military as an administrator for the Amputee Care Center at the Walter Reed Army Medical Center in Washington DC, Rozelle says, “It’s great when you see an amputee coming around the exercise track with a big smile on their face. You know there’s salvation in that.”

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Rozelle also is a spokesperson for Disabled Sports USA’s Soldier’s Fund and for the U.S. Department of Health and Human Services’ Campaign of the Presidential Physical Fitness Award for Children with Disabilities. In addition, he founded Operation Rebound, a Challenged Athletes Foundation program that helps seriously injured veterans get involved in sports like the triathlon. For more information, go to: www.fordmobilitymotoring.com

GE & AES PARTNER TO REDUCE GLOBAL WARMING

unit of General Electric Co. is working with power producer AES Corp. to develop projects that reduce greenhouse gas emissions in the United States.

GE Energy Financial Services and Arlington, Virginiabased AES will try to offset 10 million metric tons of greenhouse gases annually by 2010. That reduction is the equivalent of the annual emissions of 2.2 million average cars, GE officials said. The partnership comes amid growing worries about global warming. The partnership comes a week after potential presidential rivals John McCain and Barack Obama joined Connecticut Sen. Joe Lieberman on a plan they say would reduce annual global-warming gases by two-thirds by mid-century. The plan calls for mandatory caps on greenhouse emissions for power plants, industry and oil refineries. The GE-AES partnership will focus primarily on reducing emissions of methane, a potent greenhouse gas with a warming potential 21 times greater than carbon dioxide. Projects to capture and destroy methane emissions would include agricultural waste, landfills, coal mines and wastewater treatment. GE has pledged to more than double its investment in the development of cleaner energy technologies, from $700 million to $1.5 billion by 2010, reduce its greenhouse gas emissions one percent by 2012, reduce the intensity of its greenhouse gas emissions 30 percent by 2008, and improve the company's energy efficiency 30 percent by the end of 2012. www.ge.com www.aes.com

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ICE, ICE BABY FROM PARALYMPIC SKIING TO BOBSLEDDING

aralympic skier Stephani Victor raced her way to the overall title at the 19th annual Huntsman Cup last month at Park City Mountain Resort in Utah. The National Ability Center (NAC) hosted the event. Though Victor is no stranger to the top of the mountain, with a gold medal in slalom from the Paralympic Games in Turin, Italy, and numerous World Cups, she faced icy and snowy conditions for the second run of her Park City race. But her experience and talent helped her prevail. “The visibility was bad, and I just wanted to lay down a good second run,” she recalled. Victor coupled that win with a second one over teammate Laurie Stephens to capture the overall slalom championship. Victor was joined by a number of racers from the U.S. and abroad, including Canada and Australia, who brought ski teams to the NorAm competition to increase their International Ski Federation (FIS) point totals, in preparation for the World Cup tour, which was recently held in Breckenridge, Colorado. Visually impaired skier Canadian Chris Williamson used the weekend to gain more competition experience with new guide AJ Brown. The duo skied into first all three days of the event. “It will take awhile,” Williamson explained. “It takes a lot to get in sync.” Williamson is a B-3 rated skier, which means he has about 6 percent vision or some periphery light perception. With those limits, he must rely on Brown to communicate with him via radio and tell him about the course, the turns and the conditions. In Williamson’s races, Brown skis out just before him, and generally takes a wider line during runs to allow Williamson tighter, faster ones. Challenging weather conditions during some of the races, however, even affected the visibility of the guides.

The Park City Disabled Ski Team also performed well over the weekend. Head coach Marcel Kuonen was particularly pleased with the performance of 16-year-old sitskier Greg Shaw. Shaw took sixth and eighth place in the giant slalom races and seventh in the slalom against Paralympic-level competition, dominating the juniors division with first place victories. “We’re looking very good with Greg,” said Kuonen, who welcomed the icy and snowy conditions, because the elements exposed the younger skiers to how challenging and intense a World Cup-level race can be. NAC co-founder and CEO Meeche White was also pleased with the performance of the local team. “Our kids are coming along strong,” White said. “They’ve got their eyes set on 2010”—the Winter Olympic Games in Vancouver, Canada. On another peak, Aaron Lanningham and Matt Profitt recently became the first athletes with disabilities ever to forerun a World Cup bobsled event at the Utah Olympic Park in Park City. Both National Ability Center (NAC) athletes, Aaron, the driver, has paraplegia, while Matt, the break man, is a below-the-knee amputee. As a result of their success, the team was invited to participate in the qualifying series for the US bobsled team. Matt and Aaron’s times were comparable to many athletes competing in the America’s Cup circuit, despite the fact that Aaron is already strapped in the sled and Matt pushes solo. The event also featured the NAC’s newly retrofitted bobsled by veteran NASCAR driver and bobsled maker Geoff Bodine. Bodine equipped the sled with a sleek NASCAR style seat, shoulder harness, seatbelt, roll cage, head-rest, and leg straps to accommodate the safety of athletes with disabilities. Bodine is currently helping to build bobsleds with this adapted design for other countries, which will enable them to create programs for their athletes, and generate awareness about adaptive bobsled programs. The dream is to make bobsled a sport in the 2010 Paralympic Winter Games in Vancouver, British Columbia. www.discovernac.org www.paralympic.org

“It’s the blind leading the blind,” Williamson joked.

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ONE FOR THE KIDS CVS CHARITY CREATES ADVISORY BOARD

VS/pharmacy’s Charitable Trust, All Kids Can, has announced the creation of a new Advisory Council. It’s dedicated to supporting nonprofit organizations throughout the United States that focus on education, recreation, and medical treatment for children and young adults with disabilities. The group has established partnerships with leading nonprofit organizations, including Easter Seals, Meeting Street, and the National Center for Boundless Playgrounds. Over the next five years, the council plans to give $25 million to organizations that provide support to children with disabilities. The new council’s members will include an elementary school principal, a law professor, the director of Congressional Affairs for Easter Seals, and the editor-inchief of Exceptional Parent. All council members are knowledgeable about both education and disabilities, which will help them choose worthy, nonprofit organizations, and raise public awareness of All Kids Can’s important mission. For more, go to: www.cvsallkidscan.com

PARTNERS IN PENNSYLVANIA JOINT VENTURE CATERS TO DISABLED

ood Shepard Rehabilitation Network and the University of Pennsylvania Health System have established a new organization called Good Shepard Penn Partners, which will provide comprehensive medical and rehabilitation care to patients throughout eastern Pennsylvania. The University of Pennsylvania Health System (UPHS) is associated with University of Pennsylvania School of Medicine (UPSM). UPSM, founded in 1765, is the oldest medical school in the United States. UPHS’ network includes three world-renowned hospitals, a family-practice plan, a network of primary-care providers, two satellite facilities, and a hospice team. Good Shepard Rehabilitation Network (GSRN) provides health care to over 35,000 patients with physical and cognitive disabilities each year, specializing in assistive and rehabilitation technology. GSRN care providers are located at 30 sites in eastern Pennsylvania;

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additionally, GSRN operates inpatient and outpatient sites, an acute-care hospital, two assisted-living facilities for people with disabilities, an independent living facility, and a work training and placement program. The joint venture between the two organizations, Good Shepard Penn Partners (GSPP), will specialize in providing expert post-acute care that will help patients with disabilities to gain mobility and independence. GSPP will establish a new inpatient rehabilitation center, the Penn Institute for Rehabilitation Medicine, and a new long-term, acute-care hospital, Good Shepard Specialty Hospital. Both buildings are expected to open in the summer of 2008. www.pennhealth.com

BE OUR GUEST CARLSON HELPS SHORTER CLIENTS FEEL AT HOME

arlson Hotels Worldwide will introduce the Assistive Convenience Kit for guests at select hotels in the U.S. by July 2007. The kits are designed to make travel more accessible for the estimated one million people who are four-feet-10inches tall or shorter, or have one of more than 200 forms of dwarfism. The company recognized that for guests of short stature or with dwarfism, visiting a hotel can present a variety of obstacles, which the average-height hotel guest never encounters, including approaching the front desk, pushing elevator buttons, latching the lock on the guestroom door, hanging up clothes or sitting on the bed. Carlson brands are expanding the availability of the kit at their hotels to provide greater convenience, comfort and peace of mind for guests. The kits, which will become more widely available in mid-2007, include a stepstool, a reaching tool, a bar to lower the clothes rack in closets, and a device to retrofit the latch-hook lock on the door. The kits will be made available at all full-service Radisson Hotels & Resorts, Park Plaza Hotels & Resorts, and at select Country Inns & Suites by Carlson Hotels, and Park Inn Hotels with more than 120 rooms. For more information, go to: www.carlson.com

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NEW WINDOWS MICROSOFT UNVEILS 07 ASSISTIVE SOFTWARE

icrosoft Corp. and assistive technology vendors recently announced new products and services for people with disabilities. The products will be available in the Microsoft Windows Vista operating system and the 2007 Microsoft Office. Historically, customers had to wait six, 12 or even 18 months for assistive software and devices that supported a newly released operating system. But now, customers who experience a range of physical, sensory and cognitive disabilities will be able to purchase the latest in assistive technology right away. This includes products such as screen readers, screen magnification, onehanded keyboards and other specialized input devices. The accessibility settings and programs in Windows Vista should prove helpful to people with visual difficulties; hearing loss; pain, spasticity or paralysis in their hands or arms; or reasoning and cognitive issues. More information is available at: www.microsoft.com/enable

WORK OUT SITTING DOWN THE RESISTANCE CHAIR EXERCISE SYSTEM

With no assembly required, the chair comes ready to use and is ideal for all fitness levels. Lightweight, it stores easily and is perfect for increasing muscle and joint strength, while improving flexibility & balance. It costs about $240 and comes with Strong Heart and Leisurely Living DVDs at no extra charge. www.continuingfitness.com

BEYOND BRAILE PORTABLE READER HELPS BLIND NAVIGATE WORLD

he National Federation of the Blind has teamed up with famed inventor Ray Kurzweil to develop the first portable reading device for the blind, or for anyone who has difficulty reading printed material. The new device, called the KurzweilNational Federation of the Blind Reader, weighs less than one pound and fits in a knapsack, purse or small camera bag. The user simply holds the Reader over printed material, and within seconds the device begins reading whatever print was on the page using a clear, synthetic voice. Marc Maurer, President of the National Federation of the Blind, says, “This device is truly revolutionary. As a blind person, one of my biggest challenges is dealing with the substantial amount of printed material I encounter throughout the day.”

xercise can keep older adults limber, offset the incidence of disease and even reverse signs of aging, yet many seniors don’t get as much exercise as they need. For those whose problem is a lack of mobility, the Resistance Chair exercise system can be a great help. The chair allows users to do a full-body workout from a safe, comfortable seated position. Because you are seated, you maintain balance and stability as you exercise arms, chest, shoulders, abdomen, back and legs. An inner-anchor cable system offers a wide range of upper- and lower-body exercises, and provides smooth, low-impact resistance without use of heavy weights.

Says James Gashel, executive director for strategic initiatives at the National Federation of the Blind: “Software has existed for some time that allows a user to scan documents into a personal computer and then have the computer read the material back. But with the Kurzweil-National Federation of the Blind Reader, a person brings the machine to the material as opposed to bringing the material to the machine.”

The chair itself is made of strong, commercial-grade construction with thick-wall steel tubing. It’s built to withstand frequent use in gyms and rehab centers, and has been tested to easily hold up to 400 pounds. Designed for people 50 and over, the Resistance Chair is also used by people with Parkinson’s, MS, and other ailments.

The Reader works by taking a digital picture of the printed material. Special software extracts the text from the picture, and reads it using a synthetic speech engine. The Reader can be used with external speakers for extra volume, or with ear buds for privacy. Files can be saved and then retrieved for later use.

Gashel, who is blind himself, says he regularly uses the device. On a recent business trip, he says, “I stopped at an airport restaurant and read the menu, read the receipt and paid the bill, all without sighted assistance.”

The Reader retails for $3,495 and is available from the National Federation of the Blind with a $200 introductory discount. For more information go to: www.nfb.org ABILITY 13

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MEET JEFFERY, EMILY, CHARLES AND LISA

ive years ago, the Multiple Sclerosis Foundation (MSF) designated March as National MS Education & Awareness Month. The primary goal was to raise consciousness among the public about this often-misunderstood disease, as well as to help those who have it become further educated and empowered. MS is a complicated chronic, neurological disease that affects the brain and spinal cord. About 65 percent of those newly diagnosed are between the ages of 20 and 40, but MS can appear in early childhood or after age 60. The most common symptoms associated with MS include fatigue, weakness, numbness, spasticity, tremor, difficulties with balance and walking, bladder and bowel problems, and visual disturbances. But not all symptoms affect everyone and no two people will have the same manifestations of the disease. To illustrate the many faces of MS, meet Jeffrey and Emily, Charles and Lisa. They’re quite different from one another, but they all share a similar experience.

JEFFREY’S STORY Eleven years ago, Jeffrey Gingold was a successful litigation attorney with three university degrees. He spent long hours in the courtroom resolving complex legal disputes. In his free time, he enjoyed ice speed skating, and volunteer work with the state bar and local art groups. He and his wife, Terri, a kindergarten teacher, had two daughters, Lauren and Meredith. Owing to cognitive issues associated with MS, Jeffrey began to have trouble thinking, focusing, and making sense of his own handwriting. After a courtroom episode when his mind went blank in the middle of a

hearing, his law career came to a grinding halt. Today, at 47 years old, he is retired. Jeffrey’s primary symptoms are invisible. Paradoxically, he continues to speed skate, although a bit slower, his balance strained from time to time. Many people with MS experience a temporary worsening of symptoms when they become overheated. Speed skating allows Jeffrey to maintain strength and endurance, without having to worry about heat sensitivity. The latest neuropsychological research shows that MS causes some deterioration in cognitive function in 30 to 70 percent of those who have it. While the severity of dysfunction varies, the primary deficits involve attention, concentration, and information-processing speed. Until recently, cognitive function in MS received little attention. In fact, some physicians are still in the dark about it. In March of last year, Jeffrey published Facing the Cognitive Challenges of Multiple Sclerosis through Demos Medical Publishing. It’s one of the first books about MS cognitive dysfunction written by a patient. In it, he brings readers inside the mental twister of the disease–such as delayed recall, difficulty accessing one’s words and recognition lapses. Last summer, Jeffrey was invited to appear on television’s “The Montel Williams Show” to let others know about this invisible symptom of MS. Williams also has the disease. Since his retirement, Jeffrey has helped to secure funding for an MS early diagnosis program for indigent women in Wisconsin, and to establish an income tax check-off for voluntary giving to fund MS programs and services. He received the 2003 Volunteer of the Year Award and the 2006 Outstanding Innovative Volunteer Award from the Wisconsin chapter of the National MS Society. He is also a contributing writer to MSFocus, the quarterly publication of the MSF.

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EMILY’S STORY Emily Kiraly, a sweet 16-year-old with an endearing Southern accent, was diagnosed with MS about a year ago. Like most teenagers, she can often be found in front of her computer, instant messaging friends. She plays electric and acoustic guitar and is a member of her church youth group. She also teaches Sunday school. Emily remembers her first symptoms: “I was playing my guitar and my fingers went all numb and tingly,” she says. “Then I tripped over the curb. I’m kind of clumsy, so I didn’t think too much about it. But later, I fell again. At home, when I was typing, I kept repeating letters and hitting the wrong keys. I’d been sick a lot that year, but this one night was just really weird.” Emily was hospitalized for a week and treated with intravenous steroids. As the days passed, she lost more feeling and mobility, and needed a wheelchair to get around. She knew little about MS, and her fears were based on its most severe cases. She had been diagnosed with relapsing-remitting MS, the most common form of the disease. What Emily experienced was a clearly defined acute attack (also called exacerbations), which generally lasts from days to weeks, with full recovery, or with some residual deficit upon recovery. Upon release from the hospital, she attended physical and occupational therapy on an outpatient basis, three times a week for three months. As is often the case with MS, therapy helped tremendously. As Emily recovered from her attack, she came to realize just how many people truly cared about her. Those close to her began to understand that just because she’s in bed one day, doesn’t mean she’s going to be in bed the next day. That’s the nature of the disease. Today, Emily experiences extreme fatigue and some tremor. While it’s not debilitating, she does drop things a lot. She’s also noticed slight cognitive changes. Emily has been self-injecting with Betaseron (Berlex) since March of last year. The disease-modifying medications have not yet been extensively studied in children, but many kids who are diagnosed with MS are still taking them, generally started at a lower dose, according to their size and tolerance level. Side effects and benefits are similar to those seen in the adult population. “Being diagnosed with MS as a teenager is not the end of the world,” Emily says. “Yeah, sometimes it’s really tough. But a whole lot of good can come out of it, too. MS is something you have no control over. But you make the choice of whether or not you want to turn it into something good or bad.”

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Top: Emily Kiraly Bottom: Jeffrey Gingold and family

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CHARLES’S STORY A tight Achilles tendon first brought young Charles Crawford to the ice rink. Because the toddler walked on his toes, his doctor recommended ice skating as therapy. By the age of three, Charles was gliding gracefully across the ice, performing front and back crossovers with ease. His ability to walk like other little boys, however, didn’t come until two years later. As he got older, Charles would long for a break from the rink. But after a month away from skating, he’d start walking on his toes again. So, he stuck with skating, began competing in the sport at the age of five, and pursued it as a career after graduating high school. At the age of 20, Charles began having bouts of dizziness and fatigue. Off the ice, he was plagued by balance and hearing difficulties, and a strange facial numbness. Several doctors suspected a severe inner-ear infection, but Charles wrote the symptoms off as stress. A few years later, he began coaching young skaters, and traveling to Sweden to train both singles and pairs. In 2003, he was diagnosed with MS and the disease hit full force. He struggled through months of physical therapy in an attempt to walk normally and regain his balance. Soon it became clear that MS was not only going to end his skating career—it was going to put an end to his coaching, too. “Until that point, my life revolved around skating,” Charles says. “I’d been skating since I was three and then—poof—it was gone! Despite three lesions on my MRI, and positive results on my evoked potential and lumbar puncture (three major diagnostic tools used to confirm MS), all I wanted was a second opinion. All I cared about was when I could get back on the ice.” Despite the shocking turn his life had taken, Charles skipped the typical period of anger and depression and went straight to acceptance. He began channeling everything he had into his hobby—travel and fine art photography-–and never looked back. In 2004, he opened his own business, Crawford Imaging, in West Virginia. Today, Charles faces the same challenges as other photographers and business owners—plus MS. At one point, he lost 60% of the vision in his left eye from optic neuritis (inflammation of the optic nerve). As a photographer, this was especially scary. But Charles has learned to take what MS throws at him one day at a time, and to do as much as he can. Feeling isolated and alone, he realized he didn’t know anyone else with MS. Not one to sit around and dwell on his problems, with the support of his physical therapist, he decided to start an MS support group. He also became a patient advocate, answering questions and providing encouragement to the newly diagnosed.

“Some days, I miss being on the ice. Looking back, it’s almost like that was someone else’s life,” he says. “My life is different now. Each morning, I get up and try to deal with my new life and the new me as best I can.”

LISA’S STORY Lisa Wartchow was diagnosed with primary-progressive MS 11 years ago, at the age of 25. Throughout her childhood, she’d been in and out of the hospital with health problems. When she was finally diagnosed with MS, she was scared, angry and depressed. But she was also relieved to finally have a name for what was wrong with her. Primary-progressive MS, less common than the relapsing-remitting form of the disease, is characterized by the progression of disability, without any obvious improvements. Shortly after marrying her high-school sweetheart, Lisa was delighted to learn that she was pregnant. Contrary to doctor’s predictions that she would never bear children, she had Megan, and two years later, gave birth to her second daughter, Emily. Like so many women with MS, Lisa felt great during her pregnancy. But after the birth of her second child, she lost bowel and bladder control and required catheterization. Driving and working were no longer possible, and Lisa could only walk very short distances. In constant pain and struggling with major depression, her weight dipped to 92 pounds. Lying in bed one day, she knew she had a choice to make. With the love and support of her family, friends, and church, Lisa decided to fight. As anyone could understand, she desperately wanted to be there for her children. In an effort to ease Lisa’s severe pain and spasticity, her doctor implanted a baclofen/morphine pump. Lisa also sought medical treatment for her depression. “When I finally contacted the local independent living center and took advantage of the resources available to me, things began to improve,” Lisa says. “I was able to get help with cleaning and cooking, and regular visits from an occupational therapist. The Vocational Rehabilitation Center enabled me to go to school and develop a business plan so that I could turn my hobby into a home-based business.” A gifted artist, Lisa launched Heavenly Hobbies, a delightful shop laden with rustic floral arrangements, hand-painted baskets, elaborately painted birdhouses, lighthouses, and other creative treasures. In 2003, Lisa was crowned Ms. Wheelchair Wisconsin, a title she sought in order to be a voice for others with chronic illness and disabilities. She spoke on the importance of maintaining independence and advocated for improvements in the community-service system for those with disabilities. ABILITY 19

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In order to take her girls to school, Lisa learned to drive in a specially equipped conversion van with hand controls and a lift. She tried for years to get a service dog, but kept running into obstacles. Instead of giving up, she read a few books and trained Max herself. This loyal four-legged friend can untie Lisa’s shoes and take them off, close cupboards, zip and unzip zippers and pull ceiling fan chains. He’s also trained to get clothes from her closet. “I just shine the [laser] light on what I want to wear and he brings it to me,” she says. “Max has really helped me maintain my independence.” Today, Lisa can no longer paint due to limited dexterity and numbness in her hands. So, she’s taken up photography and the intricate planning and design of her own backyard flower garden. Her dad, her kids, and their friends help with the actual planting, and the beauty that springs forth from the earth a few months later provides plenty of pleasure. Lisa has a way of seeing the silver lining behind the many clouds that try to shadow her world, a trait that she has passed on to both of her daughters. Because MS has many faces, National MS Education & Awareness Month is a vitally important effort. So, this March help us put MS in the spotlight. Do it for Jeffrey and Emily, for Charles and Lisa. Awareness leads to understanding. With understanding, fear and discrimination recede as naturally as day follows night. Imagine a world with more love and compassion, less pain and fewer barriers. Imagine ... by Christine Ratliff Christine Ratliff is the editor of MSFocus, the national magazine of the MSF (www.msfocus.org). She has written several awardwinning articles for South Florida Parenting magazine, and she reviews books and restaurants for local publications. She can be reached at chris@msfocus.org. To learn more about MS or to participate in National MS Education & Awareness Month, contact: The Multiple Sclerosis Foundation 6350 N. Andrews Avenue Fort Lauderdale, FL 33309 1-800-225-6495 awareness@msfocus.org There are currently six disease-modifying drugs approved for the treatment of MS (Avonex, Betaseron, Copaxone, Rebif, Tysabri, and Novantrone). While these medications have been effective in addressing the physical aspects of MS, they have been less effective in addressing the cognitive aspects. Research into the effects of these drugs on cognitive dysfunction has shown limited benefit. Avonex appears to have some impact on slowing the rate of decline in processing speed, memory, executive functioning and visual-spatial ability. Betaseron has shown some effect in improving memory. But overall, the results are inconclusive.

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funny thing happened on the way to San Francisco. ABILITY editor-in-chief Chet Cooper planned to fly up from LAX for a few hours to meet with one of the foremost authorities on multiple sclerosis: Dr. Douglas S. Goodin. But it turned out Cooper was grounded. “May I have your attention, please?” a voice came over the P.A. system as he sat in the boarding area. “Flight 293 to San Francisco has been cancelled.” That was followed by more good news: “There are no more flights to San Francisco today.” After a few passengers had full-on tantrums, the airline put them on the local, flying them into San Jose, and then shuttle-busing them through Palo Alto and San Mateo up to San Francisco, 45 minutes away. It was a bumper to bumper ride. But all was not lost. As sometimes happens, Cooper got a good seatmate: Melanie Jameson. He told her he was in town to talk with neurologists at UCSF’s Multiple Sclerosis Center. “What a weird coincidence,” she replied. “I have MS myself!” She’d recently relocated from New York to Northern California, and had yet to find a local doctor. So he took her along to the interview. Her questions would be as good as his own, if not better, he reasoned. Jameson would bring a patient’s perspective to the conversation about the causes, treatment, and possible cures of MS, which affects roughly 400,000 people in the United States. Chet Cooper: How would you describe MS? Dr. Goodin: MS is an inflammatory disorder of the nervous system that tends to occur in episodes. So people get symptoms of neurologic dysfunction: blindness, numbness, weakness, imbalance, trouble with bowel and bladder. It lasts for a period of weeks to months and they typically remit at the beginning, and then later on, over the course of the illness, many patients experience a more steady and insidious progression of their disability, which is where we call the transition from remitting/relapsing MS to secondary progressive MS. A few people, not very many, have progressive MS right from the get-go. But by and large, we think of MS as being these recurrent inflammatory episodes that affect the brain in a relatively random way. CC: How would a doctor evaluate someone’s symptoms and diagnose MS? There are a lot of symptoms that could be due to something else. DG: Well, potentially, any symptom in the nervous system could be due to MS. As I said, it could be blindness, numbness, weakness, a whole variety of things. The key to making a diagnosis is that usually MS patients are young, the typical age of onset is between the ages of 20 and 40, so that takes it away from some of the other diseases of the nervous system, like strokes, which tend to

affect an older age group. So if a person comes in and they’re young, it’s more likely that you’re dealing with something like MS. This recurrence and then remission, that pattern of illness, is very characteristic of MS. If a person comes in with that, that ought to at least be on your mind. We’re obviously also helped out by laboratory tests, MR scans. Now we can image the person’s brain and actually get a very clear picture of what is going on in their central nervous system. Similarly, spinal fluid can provide us with information that would not be present in some of the other neurological problems. CC: Can you take us through a little bit of the standard procedure for treating MS? DG: It’s not usually that the person has been suffering from something or having symptoms for years. They come in with these episodes, so they may come in with an episode where they, for instance, can’t see out of their left eye, or they can see very little out of their left eye, and it’s come on over the course of a week, and now they’re coming to us and asking our opinion or asking for treatment, or both. And then we will take a history and say, “Have you ever had anything like this before?” And they’ll say, “Well, there was that one time in college 20 years ago or 10 years ago or five years ago when I woke up in the morning and my whole left side had gone to sleep. I couldn’t feel anything in my arm or leg. It was there for a week and it went away. I was told by the doctors that it was stress and finals. I didn’t think anything more about it.” That would be an important event for us to know about that would help us make the diagnosis of MS. But usually, in the interim they have not had any problems. They usually will be functionally normal. CC: What’s your opinion of the typical drugs used to treat MS? Avonex, Betaseron, Copaxone—the “ABC” drugs. DG: Well, I think all of us have our own take on the ABC drugs—which ones are more effective, or less effective. My own view is that the interferons as a class, of which there are three, Avonex (Biogen), Betaseron (Berlex), and Rebif (Serono), have better evidence of being effective than Copaxone (Teva). That doesn’t mean that Copaxone doesn’t work as well, it just means that it hasn’t been studied as thoroughly, so I have less confidence. That makes me use Copaxone relatively less. Other people are impressed by the fact, and it’s certainly true, that Copaxone is very well-tolerated and, in fact, is probably better tolerated than the interferons. They’re not as disturbed by the fact that there’s less evidence of it being effective, they like the side-effect profile and they’re more likely to use Copaxone. I think there’s a lot of individual physician variability on that. CC: Can you tell me about the trials that you’re doing at UCSF?

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DG: UCSF is actually involved in a lot of trials. One of the trials that I’m doing is looking at Betaseron, which is one of the interferons, in its current dose, doubling the dose and comparing it to Copaxone. That trial’s actually almost over. We’re about to take on a couple of trials with some novel agents that are not currently approved by the FDA but have very promising results in phase two. One of them has the very catchy name of FTY720, which just rolls off your tongue. I think it will have another name when it’s marketed, though. FTY720 looks very promising in phase two, and it’s an oral treatment, so it would avoid the injection, so that would be great. There’s another one that is called Rituximab (Genentech), which is also being used as an anticancer drug, so we have some information on the safety of that. The nice thing about Rituximab is that it also has great phase two data, but the really nice thing is, you only inject it once every nine months to a year. So both those drugs, if they work, which I hope they will, will actually be a major step forward. Melanie Jameson: How do these two drugs compare to Tysabri? DG: Tysabri (Biogen) has some problems, because of the two people that got a rare, usually fatal brain infection called multifocal leukoencephalopathy during the study. That’s made some people a little nervous. The idea of putting a 22-year old on a drug that could kill him doesn’t sound like a good choice. [i](laughs)[i] So it’s going to be two or three years before I’m going to feel really comfortable with Tysabri’s safety profile. By that time, I think these other two drugs are going to be on the market. It’s usually very hard to know in phase two how they’re going to look in phase three. One of the things that was really impressive with Tysabri was that the phase two study was a big study—involving almost 200 patients—and gave us a really good clue as to what we were going to see in phase three. The same size study has been done on these two new drugs, and they have, at least in phase two, similar

efficacy to Tysabri. But they probably have a better side-effect profile. In other words, FYT720 has actually been used in kidney transplants, so we have a fair amount of at least short-term data on FTY720, and Rituximab’s currently FDA approved for treatment of some cancers, whereas with Tysabri we really didn’t know. It was brand new. But we’ll see. Both of the drugs are very potent. I mean, the fact that you only have to use Rituximab once every nine months means that it works for a long time. There’s no take-backs. You can’t go, “Oops!” MJ: Do patients go into permanent remission? DG: Yeah. I think benign MS, or MS that doesn’t really become progressive, is a lot more common than most people give it credit for. People claim the amount of benign cases is only 10 percent, or even fewer than that. But there are a lot of things that would argue against that. For instance, in optic neuritis, which is really an MS disease, it’s linked to the same genes and it’s got the same worldwide distribution as MS. Only about 50 to 60 percent of patients ever have a second neurological event. That means that 40 percent of those people are, by definition, pretty benign. If you look at data of people sort of randomly autopsied at the age of 90, about one in a 1,000 have MS, unsuspected, at least from the ’60s. This is out of approximately 32,000 autopsies. Well, one in a 1,000 rivals the prevalence of MS in the population, one to two per 1,000. Which would mean that 30 to 50 percent of patients that have this disease never even have symptoms. So I think there’s a lot more benign MS out there. MJ: My doctor suspects that I have benign MS. I’ve been diagnosed for three years. My question is If you suspect at some point in time that your patient is benign, do you still continue treatment with drugs? DG: That’s a great question. All these things ultimately are the decision of the patient, not of the doctor. But I think it’s very hard to know how to advise patients. I would not put somebody who had a first clinical event on therapy, which puts me sort of at the far end of the bell curve, because everybody else is trying to start these people out immediately. But I don’t know whether they’re going to be benign or not. So if I don’t put them on therapy, it has two advantages. One, it gives them six months to sort of digest the fact that they’ve got a disease that is potentially disabling, and also to think about the therapies without feeling the pressure of having to start them. But I will always see them again at six months, get a scan, and if there are new lesions or they’ve had new attacks, then I recommend they go on therapy. People whose MS is benign may ultimately have their condition controlled with the medicines, but I think they are at high risk

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for having continued activity if they don’t do something. On the other hand, if they haven’t had any new lesions and they haven’t had any attacks and they’ve done just fine over the six months, then I’ll scan them again a year later. And there are a fair number of people who I am now following who’ve never been on therapy. So that’s easy. I can say, “Nothing’s happened in three years and you’ve been off therapy and I think you’re fine.” It’s much harder when you put them on therapy, because now you don’t know whether they’re doing well because of the therapy or in spite of the therapy. I think it’s very tough. If somebody came to me and said, “Look, I’ve been on disease-modifying therapies for three years and I’ve had absolutely nothing”—maybe the drug’s really, really working. It’s hard to tell. MJ: What kind of treatment do you use for patients who’ve had debilitating MS for years? Do any of these treatments help them? DG: The treatments actually seem to be more effective early on. If you look at the size of the therapeutic benefit that you get from the drugs, it seems that they’re better in the very early stages than they are in the relapsing/remitting stage, and better in that stage than in the secondary progressive stage. By the time you get to very progressed MS, I don’t think these treatments have any benefit at all, and they’re not even approved by the FDA in that setting. I mean, the insurance companies oftentimes still pay, but they’re not indicated for non-relapsing forms of MS. CC: Do you believe that stem cell research could be effective in treating MS? DG: Well, stem-cell research is obviously one of the approaches that is being explored in MS. We have therapies that actually lower the biological activity and slow down the disease process. We have therapies that can help specific symptoms, which are like putting Band Aids on cuts. They don’t do anything about the underlying biology, but they make people feel better. We have a major gap in treatments that actually promote repair of the nervous system–remyelination, axonal sprouting, that kind of thing. The stem cells could theoretically help with remyelination and repair. There are a lot of people who are looking into that. The difficulty I see is that there are a whole lot of theoretical difficulties. They don’t carry flags—how do you know that a cell is a myelin cell? CC: You ask them? DG: (laughs) Right. You can ask. Provided you know what you’re listening to. But you’re putting cells that have a lot of growth potential into unusual places, and who knows, they may become cancer. So that’s a

potential problem. In MS, the disease tends to be spread out all over the place. It’s in the brain, the spinal cord, the left hemisphere, the right hemisphere. How do you get the myelin cells to where they ought to be? That doesn’t mean that stem cells are a bad idea. I just think they have a lot of challenges to overcome. It turns out that the lesions in the brain have myelin precursor cells already there. They’re just sitting there, not doing anything. They have myelin precursor cells already sitting near the areas of demyelination. In other words, they have the cells already in place, they’re just not dividing, they’re not repairing things. So to me, it makes a whole lot more sense to try and find out what the chemical stop signal is that they’re getting, and find something that interferes with that, rather than trying to transplant stem cells. But all that is guesswork. That’s not to say that we shouldn’t pursue both avenues at the same time. The idea of stem cells is that when you start life, you start as a fertilized egg, and that’s one cell, but that one cell is going to ultimately become everything: eyes, nose, mouth, intestines. So it’s got potential to become anything. And then over time they gradually split off into their finer and finer branches off the tree, and then they get more committed. A brain cell is not going to turn into a kidney cell, because it’s too far along the brain cell pathway. So stem cells are really just cells that are early along on that path, where you can direct it to what kind of a cell you want it to become. They’re doing this down at USC. I’ve seen some of their preliminary data. They have a 12-step process, kind of like Alcoholics Anonymous, and they think they’re at step six in terms of how you get there. So they have a bunch of cells that look like, under the microscope, myelin cells. What does “look like myelin cells” mean? I don’t know. What are those cells? We don’t have any treatments at the moment that are reparative in that sense. I think we need to pursue different ideas. My guess is that stem cells won’t turn out to be the answer, but I would have told you that interferon wasn’t going to work, too. So I don’t have a crystal ball. CC: Are there surgical procedures available to treat MS? DG: Not really. People do occasionally do bone-marrow transplants. It’s not really surgery. It’s a pretty aggressive therapy, but there’s really not anything surgical that can be done. The idea of the bone-marrow transplant is that there’s something wrong with the immune system. So if you wipe out the immune system and put back in the stem cells that are immune stem cells, which are actually present in our blood, when the immune system comes back again, it’ll come back in a different state and won’t have the same properties that it had before. The problem with bone-marrow transplants is that some people die from it. You give them massive ABILITY 25

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chemotherapy. It’s not totally benign. And it’s not clear to me that it has any real benefit. But it really hasn’t been tried. I mean that kind of therapy would presumably be more effective with a 22-year-old who just had her first episode, than with a person who’s already in a wheelchair. Mostly it’s been done at the very end stages, which is where you’d expect that it wouldn’t be effective anyway. But you’re a little hesitant to do it with a 22-year-old that’s otherwise healthy and running track.

say most of the immune benefits that the baby gets are probably during the first two or three weeks anyway, and you can breastfeed for the first two weeks to a month and then shift onto your drugs. It’s not usually that big a deal. But there is a risk in the postpartum period.

MJ: I was told that most people with MS are diagnosed when they’re around 30.

DG: I think it’s basically just a roll of the dice, yeah. I think your propensity, your likelihood for having an attack varies from person to person, and also probably varies over the course of the year, but we don’t know how to predict that. I think a year off, or six months, and your attack rate is once a year, you have a 50-50 chance of having the attack during that period.

DG: Twenty to 40 is the vast majority of people. MJ: Are you finding any of them to be younger? DG: The youngest case that I know of is a year and a half. MJ: What kind of symptoms does a year-and-a-halfyear-old have? DG: They’re the same kinds of things. The one that I remember that was part of a legal case was a child who walked at nine months, and then at 15 months she was unable to walk for a period of three months, and finally was able to walk again. MJ: Do you have any feelings on women with MS taking the “ABC” drugs during pregnancy? DG: I don’t think any of them are recommended during pregnancy, though Copaxone is probably safer than the others. MJ: How do you feel about the risks of women with MS getting pregnant in general? DG: I think getting pregnant’s fine. If you look at the pregnancy year as nine months of pregnancy and three months postpartum, your risk of getting MS attacks is less in the nine months of pregnancy and greater in the three months postpartum. But if you look at the entire pregnancy year, it’s about the same. I don’t think there’s any downside to getting pregnant and having a family, but I think that you need to make sure that you have the wherewithal to take care of the child when it’s born. It could be that the person has a mate who’s willing to do that, but one needs to think of that. MJ: I have a couple of friends with MS who have gotten pregnant. They haven’t had symptoms before and they weren’t on any drugs, but after they gave birth, they had full episodes. DG: Right. You’re at increased risk in the postpartum period, so then the question is, how do you manage that? Do you breastfeed? We at least recommend that you don’t use the drugs during breastfeeding. I would 26

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CC: Can you calculate when you’re more likely to have an attack? Going on and off your meds, is that a roll of the dice?

MJ: I know some people say MS is more prevalent in the northern hemisphere than south of the equator. Do you believe this? DG: There’s no question that that’s true. The disease is more prevalent the farther you go north or south of the equator, less prevalent in the equatorial regions. So the question is, why is that? Part of the answer could be environmental. I mean, there’s less sunlight in the more northern exposures, it could be related to vitamin D. People are interested in that. Some people believe that that is the answer. A lot of the equatorial regions are populated with people of non-European descent, and they tend to have less susceptibility to MS than Europeans do, for whatever reason. That obviously plays a role. I think we’re trying to figure out all those things, but it’s been very, very difficult. CC: So there’s a genetic disposition? DG: There is a genetic predisposition. If you ask what is the likelihood of getting MS in the general population, it’s one to two in a 1,000. If you ask what is the likelihood if you have MS, that your child will get MS, it’s probably one to two in a 100. If you ask what is the likelihood of your sister or brother having MS if you have MS, it’s probably 2 percent to 4 percent. If you ask what is the likelihood of your identical twin getting MS if you have MS, it’s 30 percent. So clearly there’s a genetic predisposition. But if it were all genetic, the identical twins would have an identical risk, right? Thirty percent is far away from 100 percent, so there’s obviously something in the environment. There has to be something genetic. It’s not a terribly strong genetic trait. It’s probably multiple genes, and in fact we have good evidence that it’s multiple genes, not a single gene, not a simple Mendelson inheritance pattern. We know certain genes are linked to MS. We know, for instance, one of the immune molecules that gets put on the immune cells and helps the immune cells to recognize

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their targets, there is a specific gene that’s related to that system which is linked to MS. So that’s sort of intriguing. But that’s the only thing that we’ve been able to find. We’ve done full genome screens, and we can’t find anything else that’s reliable. CC: And you say race is also a factor? DG: Right. Africans tend to have a very low risk of MS relative to European Americans. Native Africans have a lower risk than African Americans. Eskimos I think may have zero risk.

DG: There are people that are interested in prevention. For instance, as a simple possibility, which I don’t think is going to probably turn out, because nothing in life is ever so simple, it might be that it’s a vitamin D deficiency or something like that during the in utero experience of the child. It might be that you could prevent MS in a person at age 20, by treating that person’s mother with vitamin D, in the same way that we treat with a bunch of other prenatal vitamins. There are people who are interested in that. CC: So if you are pregnant, take vitamin D just in case?

CC: But they’re north.

MJ: I’ve read that in terms of diet, red meats are good.

DG: Right, but they’re Eskimos. Asians in general, and they obviously come from Asian stock—

DG: There are as many therapies for MS as you can imagine. High-fat, low-fat, no-fat diets, vitamin this, vitamin that, snake venom, bee stings, mercury amalgam, tooth fillings.

CC: Could it be because they kiss with their noses? DG: (laughs) Could be. Or maybe it’s because the igloos are really good places to live. I’d forgotten they kiss with their noses. But Japanese and Asians tend to have a lower prevalence of MS as well. There are some areas of the world where MS seems to be getting more prevalent. Actually, in many places in the world it seems to be getting more prevalent. But some places, like Iran, which we’re actually very interested in, used to have a very low prevalence of MS, and now it’s skyrocketing. Other areas are also experiencing the same thing. CC: Are they just becoming more and more aware? DG: No, they’re not. Many of the neurologists have been trained in the U.S., and they know what MS is. It’s their impression, despite knowing MS pretty well, that it’s changed in Tehran. MJ: Is there still the impression that MS occurs more often in women than in men? DG: Well, there are more women than men diagnosed with MS. Interestingly, I think the sex ratio is changing. Around the turn of the century, it was more like one-toone. For a long time it was said to be two-to-one, and now it’s closer to four-to-one. So it’s becoming more and more prevalent in women, which is interesting, because that can’t be genetic, right? That’s got to be something in the environment. It could be an interaction between genes and the environment. MJ: So right now, the research still is on treatment and not detection? DG: Or prevention. No, I wouldn’t say that. It’s easier for us to recognize MS once it’s happened. It’s harder for us to recognize MS before it’s happened.

CC: And it all comes in one jar. DG: (laughs) There are a lot of them. And what they share is that no one has ever really looked at them in any kind of credible scientific way. The diet that most people are interested in is a diet called the Swank Diet. Roy Swank was a neurologist up in Oregon who followed a group of a couple hundred patients but based his observations on some epidemiological studies he’d done in Scandinavia. What he thought he noticed, and I think that in the ‘50s, which is when he was setting up his diet, I don’t think we were very good at epidemiology, so I’m not sure how reliable the observations are, but what he thought he observed was that in the inland areas of Scandinavia, where they had a lot of milk products and animals, the prevalence of MS was much higher than on the coast, where they had very little in the way of animal fat, and they had a lot of fish oils and all of that. So he then based a diet that is a typical 1950s diet. Have you ever looked at the Swank Diet? It’s very proscriptive. Half an ounce of cod liver oil every Thursday, Saturday, and Sunday. CC: At 3:35. DG: (laughs) Exactly. A typical sort of ‘50s diet, without any basis that I can think of, other than the fact that he picked cod liver oil. I mean, this is just pulled out of the hat. Having said that, in that group of 200 people that he followed, they seemed to do very well. So some people have been very interested in the Swank Diet ever since. I don’t know that there’s any good evidence that the diet is helpful, but it probably lowers your risk of heart disease even if it doesn’t affect the MS. www.ucsf.edu/msc

CC: Were you talking about screening as well?

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any people would attribute Teri Garr’s success to sweat, dedication and raw talent. But she gives top billing to a Beverly Hills numerologist, who convinced her to alter her name. “It was the best $35 I ever spent,” the actress and public speaker declares in the pages of her memoir, Speedbumps. There, the artist formerly known as Terry Ann Garr, dishes dizzying details of her start in Hollywood, from her commercials for Doritos to dancing roles on The Sonny and Cher Comedy Hour, to her part in Francis Ford Coppola’s film The Conversation, which earned her the Palm d’Or nomination at the 1974 Cannes Film Festival. She followed that with Young Frankenstein, Oh, God! and One from the Heart, before ABILITY 29

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hitting the jackpot with Tootsie, where her part as the spurned girlfriend, Sandy, led to an Academy Award nomination. From the outside, everything appeared sparkly. But during much of her career, Garr experienced mild symptoms that would turn out to be multiple sclerosis: tingling, tripping, muscle weakness, fatigue. The side effects were annoying, but not as much as the gossip-mill. Acting jobs began to disappear. Yet Garr pressed on. In addition to her role as an inspirational speaker, she’s recently been in a number of movies, as well as on the TV series Law & Order: Special Victims Unit. On top of that, she’s a full-time parent. In her book, she reveals the wit, passion and determination that fuel her fire: I couldn’t wait to finish high school because classes got in the way of my career. At the end of my senior year, I auditioned for the cast of the Los Angeles Road Company production of West Side Story. The movie starring Natalie Wood, Richard Beymer, and Rita Moreno had just come out and was a raging success. Most of the dancers from the original Broadway cast and from the movie wanted to work in Hollywood, so they decided to be in the LA production to see if they could get some attention from the industry. As a result, the producers needed only to fill one or two spots in the supporting cast. So I went to a rehearsal hall somewhere in Hollywood with my friend, Lynn, and a bunch of other female dancers my age, to try out for a part as one of the Jet girls. I was eliminated right away. Didn’t make it past the first round. Out. Finished. Good-bye. I was crushed. The dancing in the audition had been a breeze, but I guess my acting had hit the wrong note. I knew I was good enough for the part, so I stayed around and watched who they were choosing. It seemed to be nonsmiling tough chicks... I could do that. Then my friend Lynn told me she’d been called back. The second round of auditions was the next day. Perfect! I said to Lynn, “I’m going with you.” Lynn said, “Teri, you were dinged. You can’t go back!” To which I brazenly replied, “They’ll never remember me. Besides, I know what they want now.” I was convinced that they didn’t choose me because I smiled too much. So I went to the callback, and I was cast as a Jet girl. And Lynn, despite her legitimate callback, wasn’t. Apparently, that’s showbiz. I don’t think she ever forgave me for that.

When it came to my burgeoning career, I wasn’t going to accept rejection. If they didn’t realize how great I was, I had to give them a little “nudge.” For their own good. Of course.

NIGHT FRANKIE, NIGHT ANNETTE Soon enough I got a part in another movie choreographed by David Winters. It was Pajama Party, with Frankie Avalon and Annette Funicello. I was, as you might’ve guessed, a pajama girl. We had just started rehearsing several musical numbers, one of which was a Watusi with Dorothy Lamour (don’t ask), when the assistant director came up to a bunch of us and said, “Who can do stunt dives?” From my experience on movie sets, I knew that stunts meant more money. We pajama girls looked around at each other. No one responded. I shrugged and said, “Sure, I can do a stunt dive!” He said, “Oh yeah? What can you do?” I was on the spot. I’d never done a dive in my life, much less a stunt. So I said the first thing that came into my head. “I can do a... Blonya.” He said, “What’s a Blonya?” Good question. What was a Blonya? I had no idea. “I can’t explain it. It can only be filmed once because I go up to the end of the board and I do this... thing.” I was clearly a brilliant, articulate, stunt-driving pajama girl. He said, “How much do you want for it?” Now we were negotiating. “Five hundred dollars.” He looked at me. I weakened. “All right, I’ll do it for two hundred fifty.” I had no idea what I was doing, but I could see that if I was smart and aggressive in this business, I could get further faster. So when they said, ‘Okay, we’re rolling... and, ACTION!” I ran off the end of the diving board and did what felt like a double reverse somersault with six and a half twists. It ended in the most painful belly flop of my life, but that part of the dive didn’t appear in the movie. When I got the $250, it felt like winning a prize.

Teri with Gene Wilder in Young Frankenstein; Teri, Dustin Hoffman and director Sydney Pollack in Tootsie; Teri showing off her dancing ability

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A couple of months after I finished One from the Heart, I heard about a new movie that Sydney Pollack was dong with Dustin Hoffman. Every actress in Hollywood was auditioning for Tootsie, but my agents couldn’t land me an audition, despite the fact that I’d just wrapped a starring role in Coppola’s big new movie. Even my exercise teacher at Jane Fonda had an audition! But I couldn’t get one. I was outraged. Then the great Elaine May did a rewrite of the script. I had once done a reading of one of her plays at the Phoenix Theatre in New York, and she must have liked what she saw because, apparently, when she turned in her version of the script, she told Sydney Pollack that Teri Garr was the only one who could play the role of Sandy. Aha! Now the tables were turned, and they wanted me for the movie. But it wasn’t even the lead role. As far as I was concerned, it was too little, too late. They’d have to do their little movie without me. Except... it was Sydney Pollack, a great, talented, and powerful director. So I agreed to have a meeting and talk about it. (Nice of Queen Teri, huh?)

SQUELCHING MY INNER DIVA On my way to the meeting with Sydney, I gave myself a pep talk. “I’m gonna play the game,” said I to me. “But I’m really saying no. I’m trying to build a career here.” I guess Sydney had anticipated my reluctance, because before I could even begin to demur, he charmed me. He explained that Elaine May had championed me, and he admitted that he was persuading me for her sake. I appreciated his honesty. He was so straightforward and charismatic that I was curious to see what it would be like to be under his direction. And I like the way he talked about my character. He wanted her to be more than just a put-upon girlfriend. He knew the movie would walk a tightrope through the feminism of the day (it would be released in 1981) and explained that he believed I could make Sandy a complex character—believable, funny, and just sympathetic enough, without making Dustin’s character seem like a jerk. Sydney was a straight shooter. The more I talked to him, the more I wanted the chance to work with him. Besides, he showed me some scenes from the script, including one in which Sandy had a line that cracked me up: “I had a wonderful time at your party. Do you have any Seconal?” Plus, really, was I going to say no? Here was my chance to make a movie with Dustin Hoffman and Sydney Pollack! So I squelched my inner diva, who had said she’d only accept the lead, and took what turned out to be one of the most rewarding roles of my life. I first met David Letterman when I was doing a promotional tour for Young Frankenstein in 1974. Twentieth

Teri on the roof, New York City, 1971

Century Fox sent me to 10 cities in 10 days. As part of the tour, I was a guest on the Indianapolis radio show Dave was hosting at the time. We hit it off right away. Eventually, he got his own show on NBC, at 12:30, after Johnny Carson. That was Late Night with David Letterman. In the early ‘80s I went on that show every chance I got. Sometimes it was planned, sometimes—not so much. Often, I would get a call from Robert (Morty) Morton, Dave’s producer at the time, asking if I could be in New York for the next night’s show. I always asked, “Who died?” and then hopped on a plane anyway. At first I did it to promote the movies I was in, but as my rapport with Dave grew, I just did it for fun. And I mean fun in the masochistic sense of the word. Dave reminded me of my older brothers; he was always trying to get my goat, and he usually succeeded. Every time I went on the show I wound up exasperated. He’d make fun of me for being “ill prepared,” or he’d goad me into telling some story—like my story about going to the party at Elvis’s—when I had no desire to tell it. I’d toss my hair and threaten to storm off the stage, but then I’d stay for the abuse and come back for more. (It wasn’t really abuse, it was comedy. There’s a fine line.) I guess ABILITY 31

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Teri’s kitchen, “Special” dinners meant that you couldn’t actually eat them... they were too special

what it comes down to is that I was happy to entertain, even if it was at my own expense. I liked being in front of the live studio audience. That immediacy, the same immediacy I’d gotten used to on Sonny and Cher, was missing in the movie world.

SHOWERING AT DAVE’S

We continued to have a conversation while I showered. We were shouting back and forth; the water was on; the mike was wet. I know it sounds tame now, but in those days it was as scandalous as Janet Jackson flashing her breast during the Super Bowl. The last words you heard as the show ended were from me, yelling over the shower: “I hate you, Dave!” After the show I walked home to my apartment, 30 blocks in soaking-wet underwear. Yes, I walked. I always refused the limos they offered; I thought of myself as too down-to-earth for limos. Except this time I was walking home with damp drawers and wondering if this is how Katharine Hepburn had started.

Did I smell bad? Was my hair oily? Was he nuts? Oh yeah, he was, and so was I. I told him I had no need for a shower. He asked again. And again. He must have asked me twenty-five times. When I was little, my brothers would browbeat me like that. They’d say, “Go drop this soda off the roof.” I’d refuse, but they’d keep at it until I caved. I had this same dynamic with Dave, and I knew he wouldn’t shut up about the shower until I relented. “Okay, fine.” I got in the shower, closed the door, stripped down to my underpants, and turned on the water. Dave had won. He’d beaten me down, and across America, every guy who’d ever tried to talk a

Hollywood has its own culture, so the initial inquiries about my health ranged from caring to catty. But that wasn’t the real problem; the gossip had an immediate and devastating effect on my career. I was still reading scripts, and I still felt like I was in the game. But what might have been a lull or the beginning of a slow dropoff, became much worse as soon as word hit the street that I had MS. My work opportunities fell off a cliff. It was a done deal. The phone was ringing with inquiries about my health, but when it came to inquiries about my availability for roles, it was adios amigos. The press was hungry to know more, but the industry was sated.

One November night in 1985, Dave decided to do a show from his office. Not the studio, mind you, but his actual office, upstairs from the studio. It was the “Too Tired to Do a Show” show. I was the first guest to appear that night. We sat in his office. There was no audience, so there was no laughter, live or canned. He said, “This is my office. I have my own bathroom. Do you want to see it? Do you want to take a shower?”

girl into doing something she didn’t want to do, must have felt a small sense of victory. I thought of it as locker-room humor.

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After the publicity blitz surrounding my announcement that I had MS, my job as a spokesperson for [the MS drug] Serono went into full swing. It turned out to be one of the greatest jobs I ever had. I attended MS seminars called MS In Balance, where a doctor would explain the scientific data about MS, after which I’d give my hilarious (yes, you heard me) 30-minute speech about living with MS. For the first time in my life, I got to play myself all the time. And the character of me was going to need a lot of expensive costumes.

scientists and researchers who are working on a cure for MS, I always tell them to leave no stone unturned. I quote Norman Vincent Peale and say, “You should always shoot for the moon, because even if you don’t get there, you get a lot of other good stuff along the way.” (Look, they were researching high blood pressure when they discovered Viagra. I’m sure a lot of you men are happy about that. And I’m not unhappy about it.) I wrap up my speech by thanking people for coming, and telling them I hope to see them on the way to the moon.

I loved the idea of trying to make even a small difference in someone’s life. Hopefully, my stories would help other people with MS connect, and make them smile. I thought I could show what a difference a positive attitude could make. I thought people could benefit from that. In conjunction with drugs and medical treatment, a positive attitude and a sense of humor go a long way. In fact, more and more, science is discovering this to be true.

My body had given me a great life, and now it was time for my mind and my spirit to return the favor by sharing my feelings with others. But it was more than that. For all my life I’d loved being onstage, and it was about more than being the center of attention. I wanted to perform, to do what I did best, to use my voice and body to tell a story, and, in doing so, to engage the people who watched me. The skills I learned as an actor came in handy in my new career.

I WASN’T ALONE

We don’t make the rules. One of the only things we can control about any affliction—and life in general—is our attitude toward dealing with it. I’ve never met anyone with perfect health, a perfect marriage, perfect kids, and a perfect life. If you’re alive you’ve likely got issues, and still you find a way to lead a productive life. I remember the words of an 84-year-old friend of mine who has had MS for fifty years. Over time she’s decided that it’s just a lifelong annoyance. That is one of the best things I’ve ever heard about MS, and it’s the way I have chosen to deal with it—an annoyance that I’ve learned to live with, like bunions. It may not be pleasant, but it’s a part of who I am.

As I stood at the podium to give my first speech, I looked at the crowd of people in front of me. More women than men, old, young, in business clothes and in jeans. Slender canes punctuated the rows of chairs like exclamation points, and there was a scattering of wheelchairs. This crowd had its own appeal. They were real people—people from all walks of life. But there was more than that to this crowd. These were people who shared something very personal with me. They all had MS, or were there to support their friends and loved ones who did. I’d been to a few MS events in the past, but this time it really hit me. All the craziness of my body wasn’t my own singular nightmare. These people knew what I’d been through. They weren’t all shooting movies while they struggled with their symptoms, but they were filing law briefs and having children and waiting tables and paying bills and trying to make their lives whole, as they fought their own armies of symptoms. I know it’s a cliché, but I wasn’t alone. I hadn’t known what to expect in giving my first talk. Would I feel exposed and vulnerable? No. It felt nothing like that. It felt like I was conquering years of mystery and misdiagnosis. The first time I gave a speech, I knew it had worked. I was making a connection with this audience, my MS peers, or “my peeps,” as I like to call them. There are certain things that might sound shocking to a civilian audience (non-MSers), but with these people there was a real, honest camaraderie. We could laugh about tripping on the corners of rugs and similar mishaps. Not only was I making people laugh, I was feeling better myself. I think it was because I didn’t have to explain myself to them. They understood me, and I understood them. This stage performance wasn’t about acting, it was about truth. In my speeches, I tell the audience that when I meet

by Jacob Wascalus Wascalus is a writer, MS advocate and has MS www.penquin.com

EDITOR’S NOTE: When ABILITY’s editor-in-chief Chet Cooper arrived at Teri Garr’s house on Dec. 21st for a scheduled interview, her daughter Molly, invited him into the living room, and said, “Let me get her, I think she’s still in bed.” Twenty minutes later, Molly returned with disappointing news. “I’m so sorry,” she said, “but it looks like she’s too tired and is not going to come down.” It turns out that Teri Garr had a brain aneurysm that day. After a non-invasive procedure to treat it, the actress is recovering nicely. “She’s alert. She’s sitting up. She’s talking,” says Heidi Schaeffer, Garr’s rep. “The prognosis is very, very good.” So good, in fact, that the actress celebrated the New Year by tackling a New York Times crossword puzzle. (no mention yet of her trying ABILITY’s new crossword puzzle) ABILITY 33

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emember as a child sneaking up on your friends with a loaded water balloon and blasting them? Some say that no experience matches that childhood satisfaction. But of course, on rare occasion the water balloon would surprise you before you could throw it, bursting prematurely and drenching you instead of your target—major bummer! Now imagine if that unpredictable weapon were actually inside your body. That’s essentially what happens if you have a not uncommon, but sometimes dangerous condition called an aneurysm.

WHAT IS AN ANEURYSM? Aneurysms, in general, are weaknesses in the sides of arteries, the tubes of muscle that carry blood from the heart to the rest of the body. For some unknown reason, the muscle on one side of an artery is sometimes thinned, causing it to expand with time, like inflating a balloon. Because the blood flowing through the artery is under pressure, the wall of the artery billows out, forming a blister or bleb. If we harken back to childhood, we may recall a worn bicycle tire through which the innertube has protruded. Aneurysms infrequently cause problems—or even symptoms—while they are bulging (although they can occasionally cause trouble by pressing on surrounding tissues). The real danger is that without warning the aneurysm wall can become weak and burst, causing sudden bleeding (hemorrhage).

WHERE DO ANEURYSMS OCCUR? Although aneurysms can occur on arteries anywhere in the body, among the most common and most dangerous are those that crop up on arteries in the brain. When a brain aneurysm bursts, the brain experiences a sudden blast of pressure and blood spills into the surrounding spinal fluid. (This process is referred to as subarachnoid hemorrhage.) This blast of pressure has the same effect as hitting one’s head on the windshield in a high-speed car accident. Needless to say, the fragile brain tissue can be severely injured. Of all of our body tissue, the brain’s has the least ability to recover from such an injury. Because of the sudden and severe damage it causes, the rupture of a brain aneurysm is often thought of as a brain attack. It is also a form of stroke (though not the most common form). About half of the people who have a brain aneurysm that ruptures die immediately, similar to the mortality from a heart attack. Most of the rest don’t live long enough to leave the hospital, despite the best available treatment, as is the case with most severe 34

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brain injuries. Some persist in a coma before passing away from complications weeks or months later. Nevertheless, some people with ruptured aneurysms survive with the aid of modern treatment and return to live in the community. Unfortunately, only a handful of these patients achieve recovery similar to their condition before the aneurysm burst.

HOW COMMON ARE ANEURYSMS? It turns out that brain aneurysms (also called cerebral aneurysms) are relatively rare, and those that burst are even more rare; however, estimates are that if you’re at a party with 100 people, there’s a good chance that one of you has an aneurysm in your brain. Fortunately, not all aneurysms rupture, and many people die of other causes before their aneurysm ever has a chance to burst (and often without ever knowing they have one). To get technical, if you are that one person at the party with the aneurysm, the statistical chance that it will rupture before something else gets you depends on how many more years you are expected to live (given your age and state of health). It is possible for the aneurysm to burst any time, though, and without much warning. Nevertheless, this does not mean that we should all run to our doctors to get tests to see if we have an aneurysm. First, the tests are not hazard-free, and second, the risk of aneurysm is still relatively small— about equal to the risk of being killed today in a car accident. It is much more likely for each of us to face other varieties of vascular illness, such as a heart attack or other types of stroke.

HOW ARE ANEURYSMS TREATED? When an aneurysm bursts and the person survives long enough to get to a hospital, doctors are faced with two problems that could result in the patient’s death or severe disability: 1) the aneurysm could burst again at any moment, making the brain injury worse; and 2) the brain tissues—through a complex response to blood within the brain—can close off further blood supply, causing the brain to die from lack of oxygen. Unfortunately, despite considerable progress in recent years, treatment is often less successful than one would hope. The principle member of the treatment team is a neurosurgeon (a surgeon trained especially in the treatment of diseases of the brain and spine), with important input from neurologists (physicians who specialize in the non-surgical treatment of the brain and spine), and many highly skilled doctors and nurses

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in the emergency department, intensive care unit (ICU), radiology department and operating room. The initial and most important objective is to prevent re-rupture of the aneurysm, which would virtually assure coma or death. Until recently, this goal could be achieved only by having the neurosurgeon perform an operation on the brain to place a metal clip on the aneurysm. Now, it is increasingly possible to have a specially trained radiologist (called a neuro-interventional radiologist) place a small tube through an artery in the leg, guide it to the arteries in the brain, deposit small metal coils from the inside, and block off the blister so it cannot burst again. Neither treatment is successful 100 percent of the time and neither is without significant risks, although the procedure performed by the radiologist (called coil embolization) is less invasive. But that does not mean it’s not dangerous or that it’s always the best choice for treatment. The neurosurgeon and the neuro-interventional radiologist must collectively decide the best recommendation for each particular case. Once the aneurysm is treated to prevent it from bursting again, the treatment team then faces the big killer for those who survive the initial rupture and treatment— vasospasm (literally squeezing vessels). This is a lessthan-well-understood phenomenon whereby the blood spilled around the rupture causes the arteries in the brain to tighten or constrict abnormally. This response does not occur universally, and when it does, it may occur

several days after the rupture, when the patient has been initially stabilized in the ICU. If the arteries suddenly begin to constrict, inadequate amounts of blood reach the cells of the brain, causing them to die and ushering in a new danger. The brain is particularly vulnerable when it receives inadequate blood supply, especially if it has already been injured by the bursting of an aneurysm. Unfortunately, treatment for vasospasm is not very successful. Most of it occurs in the ICU under the direction of the neurosurgeon, who is assisted by other physician consultants. Intravenous fluids and medications are administered and many sophisticated monitors are used, but frequently vasospasm causes the patient’s death or severe disability. Occasionally, the neuro-interventional radiologist can place a tube through the artery in the leg, reach the arteries in the brain from the inside, and open the constriction with a small inflatable balloon on the end of the tube. However, this treatment is not only risky, but is also frequently only temporary, and constriction of the arteries generally recurs. The outcome of any burst aneurysm is largely determined by the condition the patient is in when he or she arrives at the hospital. If the person is in a deep coma, a successful recovery is much less likely. On the other hand, if the person arrives in good shape, there are no guarantees, but chances are better. by E. Thomas Chappell, MD

Cutaway-view of the head showing the view of an artery of the brain with an aneurysm. Aneurysms are typically about the size of the fingernail on your small finger.

Dr. Chappell is a neurosurgeon with 20 years serving primarily underserved populations throughout California. He has been a professor of neurosurgery at the Universities of California at Sacramento, San Diego and Irvine.

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ne morning, life started anew for former TV producer, author and humorist Allen Rucker. “Like the day Elvis died or O.J. was acquitted,” he says, “the Tuesday you wake up paralyzed is not a day you soon forget.” His rare condition, transverse myelitis, diagnosed more than a decade ago, is one in which the immune system mistakes the spinal chord as the enemy and attacks it. While his life as a TV producer was ending, his career as an author was just taking off. ABILITY Magazine’s Chet Cooper and Gillian Friedman, MD visited him one day recently for a lively conversation. Gillian Friedman: I saw one of your Sopranos books at the flea market the other day. Allen Rucker: Really? Which one? GF: The cookbook. AR: That book still sells. That book’s an evergreen. GF: Have you written all of the existing books about The Sopranos? AR: I’ve done every official Sopranos book. There are three of them. I was the official chronicler of The Sopranos.

GF: How did you get involved in writing about The Sopranos? AR: That was a very fortuitous event in my life. I went to film school at Stanford, where I met a number of lifelong friends. One of them is David Chase, the guy who created the Sopranos. He hadn’t created the Sopranos then, but he was always fascinated with mobsters. He’s a wonderful guy, and we’ve remained friends all these years. He’s known in LA as kind of a writer’s writer. He ABILITY 37

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bad enough being young anyway, why do you have to make them young and thin?” That kind of thing. And that went through the roof. That was a big-selling book, a No.1-selling book. It’s a perfect combination: Eat and watch the show. CC: How did you get started in the entertainment industry? AR: For the first 10 years of my so-called career, I made documentaries with a group called TVTV. We created a group and made experimental documentaries using videotape. We didn’t make any money, that’s why we broke up. The programs became pretty wellknown and still are shown in some dark circles of the underground today.

Allen wrote The Sopranos Family Cookbook

did shows like Northern Exposure and I’ll Fly Away and The Rockford Files. But they weren’t his shows. He didn’t create those shows. He’d always been a producer— showrunner is what they’re called—until he got this opportunity, relatively late in his life. He had this idea about a mob guy driven crazy by his mother, and he had to go see a shrink. That’s basically the original idea. And he got that off the ground at the same time I was doing a documentary about the mob, coincidentally. He called me up one day and said, “Do you want to write this companion book about The Sopranos?” I said, “Sure, what’s a companion book?” (laughter) I didn’t really know what it was. He gave me a lot of latitude. That’s what began this kind of creative roll. I’ve written eight books in the last six years, and that first one was what set it off. Chet Cooper: Can you tell me more about the books? AR: I’ve written three books on The Sopranos. One of them was the original book called The Sopranos: A Family History, which is kind of a faux history of a faux mob family. It’s as if I found all these records of a family from some second-rate crime reporter and put them all together. Then they came to me and said, “Do you want to do a book called The Sopranos Family Cookbook?” I said, “Sure, but I don’t know how to cook.” They said, “Don’t worry.” They got someone to write the recipes, and I wrote introductions to the recipes from the characters’ point of view. The cookbook is pure comedy. The big 300-pound guy is complaining about the cult of thinness that’s ruining American youth. (laughter) “It’s 38

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Through TVTV, I met Martin Mull, who was my writing partner for many years. We came up with the crazy idea called The History of White People in America. Because by God, they were doing shows about roots, about black Americans, and The Godfather was about ItalianAmericans, and what about the really dull white guy in the plaid Bermuda shorts? No one’s ever done a history of him. And since we can only think back to our parents in our history, and we didn’t even know our grandparents, we thought, “Where did they come from?” “I don’t know. I think they always lived in Ohio.” (laughter) So we did this silly thing for HBO, and it led to a couple books. CC: Did you always know you wanted to write, or did that happen over time? AR: I think I knew that I wanted to write in high school, but it took a long, long time for it to come out. It was always a terrible struggle for me. It took me 20, 30 years to learn to write. But something told me that’s what I wanted to do. I kept doing other things: making documentaries, producing television, all kinds of things, until finally they didn’t hire me to do anything else, so I thought maybe I should learn to do this. CC: How did you improve? Who was your coach? AR: Basically I worked with a lot of people, starting in college or right after college, I tried to write in every single form that writing comes in: journalism, fiction— CC: Mandarin? AR: (laughs) I tried Mandarin. It didn’t work. I worked writing fortune cookies for a while. I came to Hollywood and tried to write sitcoms and movies and TV movies and dramas, and I wrote a lot of sketch work. I’ve written movies that HBO’s made. I’ve written sitcom pilots and sitcom shorts—I produced and co-wrote the TV series spin-off of Fast Times at Ridgemont High,

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the famous movie. It only lasted seven shows, because it was on the wrong network. But I tried everything. Over time, I realized that I’m best at writing creative nonfiction or narrative nonfiction, as opposed to historical or research nonfiction. Believe it or not, it probably took my sudden paralysis to jar me into writing in the way that I can write best. GF: In what way? AR: First of all, I had to keep working. I’d been earning a living as a writer in Hollywood when I became paralyzed, which was 10 years ago today, so it’s been a weird day, but it’s turning out nicely. I was a working writer with a big mortgage and a family. I had to keep working. I’d been doing a lot of specials and documentaries, that’s how I made my living. But if you operate in Hollywood and you’re not a mogul—and I know you’re surprised to know this, but I’m not a mogul, although you did see my pool. That was pretty impressive. CC: Especially since it spelled out “mogul.” AR: (laughter) In the tile! It’s a hustle. It’s called the Hollywood hustle. You’ve got to hustle all the time, especially if you are, like me, a freelance writer. You’ve got to go to lunches and pitch meetings and meet with people and belly up to stars, go out with producers. You’ve got to be out there hustling, keeping your name out there. After I became paralyzed, I felt very self-conscious about hustling. If you’re in a wheelchair for the first time, would you like to roll into a meeting at CBS? You feel self-conscious as hell. You feel like an adolescent. Everybody’s looking at you. Everybody’s talking about you. Everybody sees every little thing you do. Especially if you do some bone-headed thing like back up and flip over on your back in the middle of an edit session, which has happened more than once, and everybody’s coming around and picking you up. Then they feel sorry for you, which is the worst feeling in the world. When that sort of thing happens, you don’t want to go out that much. I was 50 years old when I became paralyzed, and I didn’t know how to behave. I didn’t know what you’re supposed to do. All of a sudden the Hollywood hustle’s not so much fun. It wasn’t that much fun anyway. I hated to go to pitch meetings. I hated to go to long production meetings where they go over every detail of a production, or go to casting sessions that last for days. I always thought they were a waste of time. Plus, it was a hassle to do that after I became paralyzed. Even if I wanted to do it, it was still a hassle. I’d go to a producer’s meeting and realize that there was no eleva-

Allen winning a Media Access Award—presented by friend Martin Mull

tor, so all of a sudden three guys are hauling me up the steps. It was awkward, troublesome. So writing became the obvious thing to do. I began working on my book, Best Seat in the House, three days after I became paralyzed. I said, “Here’s something to write about.” (laughs) But it wasn’t until David Chase came along and suggested writing something that straddles the line between fiction and nonfiction that I really began to write, and every time after that, when one of my books came out and did well, it just gave me that much more confidence, until finally I turned the corner. Now writing’s all I do, and all I can imagine doing. All those other things, like producing a TV show, it’s impractical. So you find the things that you can do. You go with your strengths as opposed to fighting off your weaknesses. I know there are lots of people who’ve been paralyzed who want to play sports, or climb mountains or become dancers. I thought about it, but ballroom dancing didn’t seem like an option. It seemed to me like that was just pushing against the grain. A guy I know, a country singer who’s like a Zen philosopher, he says, “Why do you keep hitting your head against the rock? Why don’t you just go around the rock?” I never for a minute wanted to hit my head against any rocks. I just wanted to go around the rocks. And that’s what writing allowed me to do–go around the rock. CC: It was almost that it helped you find your place. It was kismet in a sense. AR: I don’t think things happen for a reason. I think you ABILITY 39

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just sat in this room that my wife, Anne Marie, created for me in this house, and part of the time I just didn’t want to leave it, I felt self-conscious, and part of the time I didn’t have any work. So I just started writing in a journal and writing to a friend in Oregon every single day. Writing, writing, writing. I wrote down everything that was on my mind. Every joke, every slight. “You can’t imagine what happened yesterday. Anne Marie put me in the corner with Grandpa at the grocery store, and he asked me, ‘Where’d you get that wheelchair, Sonny? You get it from Medicaid?’” Tales like that ended up in Best Seat in the House. So I was just writing, writing, writing, and it was a relief. CC: How was it a relief?

Allen at a book signing

figure out the reason they happen after they happen. By inventing your life after an event like this happens, if you do it well, if you don’t invent a heroin-centric life or a lay-in-bed-all-day-centric life, but you try to invent something that makes you feel good about yourself, you’ll figure things out. A really severe, life-changing event like this can have positive consequences. There are things that you mourn and never get over losing–like your legs–but there are other things that come out of it. I’m just lucky. You’re right, it was kismet, a confluence of things coming together. This happened when I was 51 years old. I already had a long-suffering wife. We had kids. One was already in college. I already had a career, checkered as it may have been, and I had a life. I’d done a lot, so if I had been bedridden for the rest of my life, I’d still have a life to look back on. I can’t imagine being 20 years old and this happening. Talk about being pissed. I can’t imagine just not being furious with people. But those 20-year-olds, who unless there’s a breakthrough in stem-cell research are going to have to live like this, they can take something like this and it’s an invention. It’s a creative act. “What am I gonna do now?” Try this, try that, trial and error. Those guys can make really interesting and productive lives if they figure out what they want to do, and how they want to do it, and how to go around the rock. GF: Has your paralysis changed you as a writer? AR: I had nothing but time after I became paralyzed. I 40

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AR: First of all, I didn’t have control over my legs. I didn’t have control over my bowel system. I didn’t have control over my balance. I didn’t have control over anything. But I had control over those words. I could put those words together. And the more I did it, the more control I had. Plus, it was the easiest way to communicate with people. I was doing it every single day. And then I realized that it was great, not doing it for someone else. I was still working and doing specials, but really I was writing to respond to people, like this friend of mine in Oregon whose husband had just died. She wanted someone to vent and communicate with, just going back and forth. I was also writing journal entries, bad country songs, short stories. It was just writing to write. It was just like the guy throwing the basketballs over and over again. I don’t know if it was therapy or whatever, but it helped me get through that obvious kind of transition that you go through from being ambulatory to non-ambulatory. GF: At what point did you decide: It’s time to create a book out of this? AR: I’ve been working in show business for a long time, so I knew that just because I wanted to write a book about paralysis, publishers wouldn’t be lining up at the door. “A book about paralysis? We’ve never heard of such a thing! Please, send it off, here’s a check!” No. I knew I had the book in me. I thought I had a good story to tell, and that’s what it comes down to. The reason it sold was because not only was it a book with an interesting story, a guy in midlife, blah-blahblah, but it was funny. They said, “Oh, yeah, that’s good.” CC: That’s hysterical subject matter for a book! AR: It’s a no-brainer! I was just fortunate that one editor was passionate about the book. I think every sitcom, every journal, every piece of journalism, everything I’ve

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ever done came together in this book. So if it doesn’t do well, I’ll be really mad. (laughter) GF: You’d been journaling for years at this point. As you went back over your entries, and put together the material for the book, was there anything you had written that surprised you on second reading? AR: How well it was written. (laughter) It was good. I’m really glad I wrote it down, because you forget. I’m a comedy writer, and as my friend Martin Mull said, the only skill necessary to be a comedy writer is to remember everyone you’ve ever met and have no respect for any of them. I had a pretty good memory of doing that. But there are lots of moments where I really came home that day and captured it, which led me back to the experience so I could recapture it for the book I have transverse myelitis, which is a rare, neurological disorder of the spine. Anyway, 60 percent of people who contract transverse myelitis have some kind of recovery. Thirty-three percent of them have almost total recovery, maybe use a cane, but they can walk again. Another 33 percent have partial recovery—they use crutches or a walker, but they can move their legs. And only the lower 33 percent, only the slow kids in the class, never recover. So for the first year, we were convinced that I would be bouncing back. I’m healthy. I was in great shape. I was a runner. Everything looked good. But nothing happened. My neurologist, God love him, although he stopped using the word “recovery” some eight months in, wanted me to discover on my own that I wasn’t going to walk again. He didn’t want to comment, for whatever reason, whatever his psychology was. Then I went to see a famous neurologist at UCLA for a second opinion. He takes one look and he goes, “Man, you’ll never walk again. There’s not a chance of you walking. There’s not a chance of anything, unless there’s some medical breakthrough, and it’s not going to happen in your lifetime.” He was literally that blunt. He looked me right in the eye and said, “You will never walk again.”

AR: It is what it is. I was obviously conscious of that when I was writing it. I tried to dance around things in a way that at least it doesn’t embarrass you when you read it. But I thought it was an absolutely crucial part of the process, and I think without it, it wouldn’t have been the same book. And I think that’s what a lot of people respond to. “My God, he told us about himself.” In the same way Joan Didion told you what it was really like to have your husband of 40 years die at dinner one night. It’s pretty painful if you read it. That’s what that kind of nonfiction is about. The words give you a certain distance from yourself. It’s almost like you’re writing about a character named Allen Rucker. Obviously fiction writers write about themselves all the time, they just change the names. Here I didn’t change the names. It seemed to me that that’s the only way to do it. I’m glad. There’s nothing in the book where I’d go, I wish I hadn’t told them that. CC: What kind of reader did you envision for Best Seat? Did you write it specifically for an audience of people with disabilities? AR: I wrote the book for both disabled people, and probably for the people who are just curious, or the people who are freaked out. People get so freaked out that something like this might happen to them. How could they possibly go on? And I inevitably say, “Well, you’ll probably end up not being that homeless heroin addict that you think you will.” And they go, “Oh, no, I never could do what you do. I’d shoot myself.” They absolutely don’t believe you. And I think that’s because maybe nothing really awful has ever happened in their lives. So they’re really not aware that they are probably more resourceful in dealing with calamity than they know. CC: Did you ask yourself, Why did this happen to me?

GF: One of the things I really liked about Best Seat in the House was, it’s searingly honest. You’re telling all of these incredibly personal things.

AR: Here’s an irony that I describe at length in the book: Only after I became disabled did I cease feeling like a victim. For my whole life, I felt like the cards were stacked against me. People wouldn’t understand me. I wasn’t from the right place. Hollywood didn’t ever get my ideas. It was just a myth you walk around with, the self-victimization myth. There are many levels of it in this culture. It’s a very popular kind of mindset here in America. Only when I was a victim did I say, “I don’t want to be thought of as a victim! I’m not a victim! I’m hanging in there. I don’t think of myself as a victim. You might think of me as one of life’s losers, but I don’t.” It took the paralysis to shake that mindset. There’s an irony for you, Chet. Put that under “Irony.” That’s true. I’m telling you, it’s true. I’m not lying.

AR: “Honest” is the word that keeps popping up a lot. I didn’t realize it.

CC: Have you become involved with the disabilityrights movement?

GF: Do you ever feel a little naked?

AR: I have friends who immediately thought, “You’ll be big in the disability-rights community, you’ll be beating

Anyway, I went home and I wrote that down, because it was a devastating experience. If I hadn’t done that, I don’t think I would have remembered that in the same way.

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of the people that comes up with ideas for the ceremony every year. I think that’s a great thing, and it’s only getting better. It should be on television. So I am involved in that way. But even though I’ve been paralyzed for 10 years, I don’t really think of myself as a disabled person. I just think of myself as a guy that got this thing. I don’t own it. CC: Most of the disability-rights movement is about living independent of the disability. Different people are trying to promote it in different ways, whether through legislation or through specific issues dealing with a specific disability. But the bottom line is that the movement is considered a civil-rights movement.

Allen at home in Los Angeles

on doors and that kind of stuff.” And I didn’t have that impulse. My impulse was to figure out my life as a nondisabled disabled person. I didn’t want to play the disability card in the line at the airlines. I certainly didn’t want to play it as a lifestyle. I’ve become involved in two organizations related to the disability movement, though. I’m the co-chairman of the Writers with Disabilities Committee at the Writer’s Guild of America. I love those people and I love that. It’s an awareness thing. There are something like 56 million disabled people in America. These people at UCLA have worked with SAG and find that the number of disabled-speaking parts on TV is like .04. There just are no disabled people on television. People say, “Well, I saw a girl that was blind six years ago.” You remember every one of them because they’re so rare. So in that sense, there’s a lot to be done in getting disabled writers out there—not to write just about disabilities, but just to write, and also to raise the awareness about disabled characters on TV. I’m also becoming increasingly involved in an organization called the Transverse Myelitis Association. I absolutely love the guy who runs it, Sandy Siegel. He’s the most selfless man I ever met. He lives in Columbus, Ohio. He works as an accountant every day. His wife has transverse myelitis. They’re only about 34. He devotes his life to publishing a newsletter. He sits on the phone every weekend talking to people calling him from all over the country, freaked out because their husband or wife suddenly developed transverse myelitis. I’m also involved in the Media Access Awards. I’m one 42

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AR: And I think there’s been a lot of success. Again, this attitude is in my new book. I’m of the attitude that it’s all either changing very radically, or is going to change. I did not become disabled in the dark ages of disability. I became disabled after the Americans with Disabilities Act. I still get ignored by some people, but at least I’m kind of middle class. I’m not poor. I don’t have to scrounge every day. People accept me. It’s fine with them. It makes some people nervous. It probably makes me more nervous than it does them, or it makes me nervous and then it makes them nervous. But you don’t see looks of horror because you’re in a wheelchair. You’re a little unusual, but not as unusual. I think the future of disability is very bright. CC: You could ballroom dance, you just don’t want to. AR: (laughs) You don’t want me out there doing that. But coming in where I came in, at the age that I came in, I see these things changing very quickly. There are more disabled people on television in the last few years than ever before. You watch My Name Is Earl and there are blind girls and girls with one leg. You watch Larry David’s show, Curb Your Enthusiasm, he’s getting into arguments with guys in wheelchairs in bathrooms over using the handicap stall and stuff like that. CC: Do you think society’s image of people with disabilities is starting to improve? AR: I really do. I think it’s just going to become more and more the fabric of life. I think because there’s someone turning 50 every seven seconds, that will increase the number of Baby Boomers dealing with disabilities, and it’s literally going to become chic. www.allenrucker.com

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llen Rucker is the author of eight books, most of them written since he was paralyzed by transverse myelitis 10 years ago. He’s written three tomes on the HBO series The Sopranos alone, including the No. 1 New York Times bestselling The Sopranos Family Cookbook. Other works include The History of White People in America (with Martin Mull) and Redneck Woman (with Gretchen Wilson). In his hilarious new memoir, Best Seat in the House, he chronicles his transition from negotiating the world on two feet, to running over it on four wheels. In this excerpt, he plays detective. Like the three bears, who track down the blonde sleeping in their bed, he explores who’s really parking in those blue spaces at the mall. As much as people try to avoid you, or accost you, in public, and as much as you try to go about your business without undue hassles, there are inevitable confrontations that demand you do something besides nod like a cluck and keep wheeling. Many of those confrontations involve parking. No one seems to resent the extra-wide toilet stalls with handrails for the handicapped. The nonimpaired tend to use them with impunity. And you don’t hear a lot of grumbling about the special handicapped section in the last row at the movie theater, since no one wants to sit back there anyway. But the convenience of handicapped parking strikes many as rank favoritism, which of course it is. That little parking placard (blue in California) just reeks of “I’m special and you’re not.” Ironically, what was created as a badge of immobility has become a badge of privilege, not a good thing in mythically classless America. “Yeah, right” is the blunt response of many hurried drivers. There are many ways this can get expressed. One is

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to blithely park the minivan in the handicapped space right in front of the Super Store, knowing that your chances of getting caught are probably no worse than your chances of getting caught with your dog off the leash. This is expensive risk-taking. In the city of Los Angeles, for instance, the parking patrol writes about 30,000 citations a year for violations of handicapped parking spaces. And the fine can be pricey, from $330 in LA to much more elsewhere. In the city of Glendale, adjacent to LA, the fine is $1,200. Did you save that much time? It’s best for scofflaws to display some kind of placard, even an out-of-date one. The cops don’t look that closely. You could steal one from an unlocked car, or better yet, buy a fake placard from the underground placard trade. According to one source, there are approximately 400,000 valid placards in use in Los Angeles, and twice as many fake ones in circulation. The word on the street is that you can buy them at flea markets or any place where fake Rolex watches and Chinese-made Gucci handbags are sold. The going rate in LA is about $25 a pop. (Prices may vary in your area.) At that rate, you can give the placards out as presents at the office Christmas party. Don’t tell me this is a petty public concern. When you can market 800,000 fake anything in a city like this, that’s a lucrative racket. Someone out there is getting rich off the crippled people. Not that it’s very hard to get an official placard from the DMV and save your $25. Generally, all it takes is a letter from your doctor, the same doctor who gave you a prescription for Valium because “life” was making you nervous. Play your cards right and you can get a placard because you have a trick knee. I began to take close note

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of who had these placards, and my early research indicated that an inordinate number of people, with no visible disability or impairment, displayed one proudly. Maybe the sign really belonged to an invalid at home—though this would still be a clear parking violation. Or maybe the driver had a heart condition, or some other perfectly legitimate, albeit invisible health problem, such as lung disease, low vision, or diabetes, that necessitated the convenience. Far be it from me to cast aspersions because someone who seems a little too healthy has just taken the only available handicapped parking spot in three square miles, and was last seen running at full speed into the department store white sale. This person very well might be willing to die of late-stage emphysema just to get the last duvet at 50 percent off. You never can tell. Occasionally someone crosses the line in the handicapped parking wars and you have to defend your territory. It can get ugly out there. I read about a disabled man in Florida, who was arrested after brandishing a sword during a flap with another disabled man over a parking space. He must have just seen Braveheart. The strangest incident of this kind, in my experience, occurred after I had learned to drive with hand controls, and just after I had gotten out of the hospital for one of my many weeklong infection-related trips. I was feeling perky and wanted to buy a book, so I drove down to the local mall. All the handicapped spots were filled. Remember: There are 1.2 million real and fake placards in LA and probably 314 actual spots. In one space, I noticed, was a big, blowsy lady in a fuchsia-colored hot-pants ensemble circa 1976, who seemed to be moving shoe boxes from the backseat of her Toyota to the trunk in anticipation of leaving. So I pulled up and politely asked, “Are you about to leave?” She turned in a huff and stared me down. “Do I look like I’m about to leave? ’Cause I’m here to tell you, I ain’t leaving. You can write down my license plate if you want, but I ain’t leaving.” She then got back into her car and turned the radio up to the kick-out-the-jams level, no doubt to drown out the incessant chirping of insects like me. I got the clear message that I wasn’t the first crabby placard waver to inquire about that space. I toured the lot, looking for another space and plotting my next move. I pulled up beside her again and politely pointed out that she was in a disabled spot and had no placard. “See, I’m paralyzed, you see,” I said, “and need to be close to that elevator, because, ah, that’s the way things are set up. Are you yourself disabled?” (I was clearly goading her at this point.)

Luckily, another car pulled out of a disabled spot nearby and I pulled in. I figured this was the end of my encounter with the brazen trespasser nee hit woman. Still, I was so freaked out by her volatility that I tried to wheel up to the elevator as inconspicuously as possible, head lowered almost to waist level, to avoid further contact. It didn’t work. As I rolled past, I heard one last verbal uppercut. “Hey, wheelchair boy, I hope you’re paralyzed because someone kicked the sh*# out of you!!” That did it. That pissed me off. Steal my parking place, fine. Give me the finger and think I’m deaf, fine. But don’t rejoice in my condition. I rolled upstairs and had the store people call security to check on this woman. I was worried about the next person in a chair; she might decide to kick the sh*# out of him. An hour later I returned to my car, figuring that the woman was either gone or waiting in the shadows with a tire iron. When the elevator door opened, the scene was like an episode of Cops. Two LAPD cars had blocked her car, still in the same spot, and had Ms. Hot Pants in handcuffs against the wall. Four or five security guys were standing around, rubbernecking. I felt a little guilty, so I asked one of them, “Did I do a good thing or bad thing by calling you in?” “Oh, a good thing,” he said, “That crazy woman wouldn’t budge, and now she and her car are going downtown. I sure wasn’t going to mess with her. Hell, I’m just security.” When I was safely away, I realized that I wasn’t really mad at this woman. In a way, I admired her take-no-prisoners attitude. She could have been cranked on speed or just nuts, but I’m sure she thought she had a right to that space and screw all the whiny placard elitists who tried to shame her out of it–the special people demanding special treatment. Her life was no doubt pretty crappy, too. Why shouldn’t she get a break now and then? Allen Rucker The above excerpt is reprinted with permission from The Best Seat in the House: How I Woke Up One Tuesday and Was Paralyzed for Life by Allen Rucker, copyright 2007 by Allen Rucker and published by HarperCollins. It is available through retail booksellers or at www.harpercollins.com

She again turned like a charging bull, raising her arms high and wide. “Do I look like I’m disabled?” she shouted, doing a 360-degree turn like a whacked-out runway model. She said it three times, as if I were hard of hearing. “then you’re breaking the law,” I said. At this point, she glared at me like I was a dead man, gave me the finger, turned the radio up even louder, and went back to shuffling shoe boxes from seat to trunk. ABILITY 45

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A NEW SCIENCE HELPS PEOPLE GAIN (OR REGAIN) IMPORTANT SKILLS Cheryl Schiltz feels like she’s perpetually falling. And because she feels like she’s falling, she falls. When she stands up without support, she looks, within moments, as if she were standing on a precipice, about to plummet. First her head wobbles and tilts to one side, and her arms reach out to try to stabilize her stance. Soon her whole body is moving chaotically back and forth, and she looks like a person walking a tightrope in a frantic seesaw moment before losing balance–except that both her feet are firmly planted on the ground, wide apart. She doesn’t look like she is only afraid of falling, more like she’s afraid of being pushed. “You look like a person teetering on a bridge,” I say. “Yeah, I feel I am going to jump, even though I don’t want to.”

sychiatrist and psychoanalyst, Norman Doidge, MD, traveled the country to meet scientists championing a new field called neuroplasticity, and the patients it’s helped, including people whose mental limitations or brain damage were seen as unalterable. In The Brain That Changes Itself, the doctor puts the lie to centuries-old notions that the brain is unchangeable. In this excerpt, he writes about the breakthrough of a woman who, for five years, couldn’t stop falling down.

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Watching her more closely, I can see that as she tries to stand still, she jerks, as though an invisible gang of hoodlums were pushing and shoving her, first from one side, then from another, cruelly trying to knock her over. Only this gang is actually inside her, and has been doing this to her for five years. When she tries to walk, she has to hold on to a wall, and still she staggers like a drunk. For Cheryl there is no peace, even after she’s fallen to the floor. “What do you feel when you’ve fallen?” I ask her. “Does the sense of falling go away once you’ve landed?” “There have been times,” says Cheryl, “when I literally lose the sense of the feeling of the floor… and an imaginary trapdoor opens up and swallows me.” Even

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when she has fallen, she feels she is still falling, perpetually, into an infinite abyss. Cheryl’s problem is that her vestibular apparatus, the sensory organ for the balance system, isn’t working. She is very tired, and her sense that she is in free fall is driving her crazy because she can’t think about anything else. She fears the future. Soon after her problem began, she lost her job as an international sales representative and now lives on a disability check of $1,000 a month. She has a newfound fear of growing old. And she has a rare form of anxiety that has no name.

WELL-BEING IS BASED ON BALANCE An unspoken and yet profound aspect of our well–being is based on having a normally functioning sense of balance. In the 1930s the psychiatrist Paul Schilder studied how a healthy sense of being and a “stable” body image are related to the vestibular sense. When we talk of “feeling settled” or “unsettled,” “balanced” or “unbalanced,” “rooted” or “rootless,” “grounded” or “ungrounded,” we are speaking a vestibular language, the truth of which is fully apparent only in people like Cheryl. Not surprisingly, people with her disorder often fall to pieces psychologically, and many have committed suicide. We have senses we don’t know we have–until we lose them; balance is one that normally works so well, so seamlessly, that it is not listed among the five that Aristotle described, and was overlooked for centuries afterward. The balance system gives us our sense of orientation in space. Its sense organ, the vestibular apparatus, consists of three semicircular canals in the inner ear that tell us when we are upright and how gravity is affecting our bodies by detecting motion in three-dimensional space. One canal detects movement in the horizontal plane, another in the vertical plane, and another when we are moving forward or backward. The semicircular canals contain little hairs in a fluid bath. When we move our head, the fluid stirs the hairs, which send a signal to our brains telling us that we have increased our velocity in a particular direction. Each movement requires a corresponding adjustment of the rest of the body. If we move our heads forward, our brains tell an appropriate segment of our bodies to adjust, unconsciously, so that we can offset that change in our center of gravity and maintain our balance. The signals from the vestibular apparatus go along a nerve to a specialized clump of neurons in our brain, called the “vestibular nuclei,” which process them, then send commands to our muscles to adjust themselves. A healthy vestibular apparatus also has a strong link to our visual system. When you run after a bus, with your head bouncing up and down as you race forward, you are able to keep that moving bus at the center of your gaze

because your vestibular apparatus sends messages to your brain, telling it the speed and direction in which you are running. These signals allow your brain to rotate and adjust the position of your eyeballs to keep them directed at your target, the bus. I am with Cheryl and Paul Bach-y-Rita, one of the great pioneers in understanding brain plasticity, and his team, in one of his labs. Cheryl is hopeful about today’s experiment and is stoical but open about her condition. Yuri Danilov, the team biophysicist, does the calculations on the data they are gathering on Cheryl’s vestibular system. He is Russian, extremely smart, and has a deep accent. He says, “Cheryl is patient who has lost vestibular system—95 to 100 percent.” By any conventional standard, Cheryl’s case is a hopeless one. The conventional view sees the brain as made up of a group of specialized processing modules, genetically hardwired to perform specific functions and those alone, each developed and refined over millions of years of evolution. Once one of them is this damaged, it can’t be replaced. Now that her vestibular system is damaged, Cheryl has as much chance of regaining her balance as a person whose retina has been damaged has of seeing again. But today all that is about to be challenged.

‘IF I DON’T LAUGH, I’LL CRY’ She is wearing a construction hat with holes in the side and a device inside it called an accelerometer. Licking a thin plastic strip with small electrodes on it, she places it on her tongue. The accelerometer in the hat sends signals to the strip, and both are attached to a nearby computer. She laughs at the way she looks in the hat, “because if I don’t laugh I will cry.” This machine is one of Bach-y-Rita’s bizarre looking prototypes. It will replace her vestibular apparatus and send balance signals to her brain from her tongue. The hat may reverse a completely unnecessary trauma. In 1997 after a routine hysterectomy Cheryl, then 39 years old, got a postoperative infection and was given the antibiotic gentamicin. Gentamicin is known to poison the inner-ear structures, and can be responsible for hearing loss (which Cheryl doesn’t have), ringing in the ears (which she does), and devastation to the balance system. But because gentamicin is cheap and effective, it is still prescribed, though usually for only a brief period of time. Cheryl was given the drug way beyond the limit. And so she became one of a small tribe of gentamicin’s causalities, known among themselves as the Wobblers. Suddenly, one day she discovered she couldn’t stand without falling. She’d turn her head, and the whole room would move. She couldn’t figure out if she or the walls were causing the movement. Finally she got to her feet by hanging on to the wall and reached for the phone to call her doctor. ABILITY 47

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When she arrived at the hospital, the doctors gave her various tests to see if her vestibular function was working. They poured freezing cold and then warm water into her ears, and tilted her on a table. When they asked her to stand with her eyes closed, she fell over. A doctor told her, “You have no vestibular function.” The tests showed she had about 2 percent of the function left. “He was,” she says, “so nonchalant. ‘It looks like a side effect of the gentamicin.’” Here Cheryl gets emotional. “Why in the world wasn’t I told about that? ‘It’s permanent,’ he said. I was alone. My mother had taken me to the doctor, but she went off to get the car and was waiting for me outside the hospital. My mother asked, ‘Is it going to be okay?’ And I looked at her and said, ‘It’s permanent…this is never going to go away.’” Because the link between Cheryl’s vestibular apparatus and her visual system is damaged, her eyes can’t follow a moving target smoothly. “Everything I see bounces like a bad amateur video,” she says. “It’s as though everything I look at seems made of Jell–O, and with each step I take, everything wiggles.” Although she can’t track moving objects with her eyes, her vision is all she has to tell her that she is upright. Our eyes help us know where we are in space by fixing on horizontal lines. Once, when the lights went out, Cheryl immediately fell to the floor. But vision proves an unreliable crutch for her, because any kind of movement in front of her–even a person reaching out to her–exacerbates the falling feeling. Even zigzags on a carpet can topple her, by initiating a burst of false messages that make her think she’s standing crookedly when she’s not. She suffers mental fatigue, as well, from being on constant high alert. It takes a lot of brain power to maintain an upright position–brain power that is taken away from such mental functions as memory and the ability to calculate and reason.

SHOCKS LIKE CHAMPAGNE BUBBLES While Yuri is readying the computer for Cheryl, I ask to try the machine. I put on the construction worker’s hat and slip the plastic device with electrodes on it, called a tongue display, into my mouth. It is flat, no thicker than a stick of chewing gum. The accelerometer, or sensor, in the hat detects movement in two planes. As I nod my head, the movement is translated onto a map on the computer screen that permits the team to monitor it. The same map is projected onto a small array of 144 electrodes implanted in the plastic strip on my tongue. As I tilt forward, electric shocks that feel like champagne bubbles go off on the front of my tongue, telling me that I am too far forward. On the computer screen I can see where my head is. As I tilt back, I feel the champagne swirl in a gentle wave 48

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to the back of my tongue. The same happens when I tilt to the sides. Then I close my eyes and experiment with finding my way in space with my tongue. I soon forget that the sensory information is coming from my tongue, and can read where I am in space. Cheryl takes the hat back; she keeps her balance by leaning against the table. “Let’s begin,” says Yuri, adjusting the controls. Cheryl puts on the hat and closes her eyes. She leans back from the table, keeping two fingers on it for contact. She doesn’t fall, though she has no indication whatsoever of what is up and down except the swirling of the champagne bubbles over her tongue. She lifts her fingers from the table. She’s not wobbling anymore. She starts to cry–the flood of tears that comes after a trauma; she can open up now that she has the hat on and feels safe. The first time she put on the hat, the sense of perpetual falling left her–for the first time in five years. Her goal today is to stand, free, for 20 minutes, with the hat on, trying to keep centered. For anyone–not to mention a Wobbler–to stand straight for 20 minutes requires the training and skill of a guard at Buckingham Palace. She looks peaceful. She makes minor corrections. The jerking has stopped, and the mysterious demons that seemed to be inside her, pushing her, shoving her, have vanished. Her brain is decoding signals from her artificial vestibular apparatus. For her, these moments of peace are a miracle–a neuroplastic miracle, because somehow these tingling sensations on her tongue, which normally make their way to the part of the brain called the sensory cortex–the thin layer on the surface of the brain that processes the sense of touch–are making their way, through a novel pathway in the brain, to the brain area that processes balance.

HELP FOR THE ELDERLY “We are now working on getting this device small enough so that it is hidden in the mouth,” says Bach-yRita, “like an orthodontist’s mouth retainer. That’s our goal. Then she, and anyone with this problem, will have a normal life restored. Someone like Cheryl should be able to wear the apparatus, talk and eat without anyone knowing she has it. “But this isn’t just going to affect people damaged by gentamicin,” he continues. “There was an article in the New York Times yesterday on falls in the elderly. Old people are more frightened of falling than of being mugged. A third of the elderly fall, and because they fear falling, they stay home, don’t use their limbs, and become more physically frail. But I think part of the problem is that the vestibular sense–just like hearing, taste, eyesight, and our other senses–starts to weaken as we age. This device will help them.” “It’s time,” says Yuri, turning off the machine.

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Now comes the second neuroplastic marvel. Cheryl removes the tongue device and takes off the hat. She gives a big grin, stands free with her eyes closed, and doesn’t fall. Then she opens her eyes and, still not touching the table, lifts one foot off the ground, so she’s balancing on the other. “I love this guy,” she says, and goes over and gives Bach-y-Rita a hug. She comes over to me. She’s overflowing with emotion, overwhelmed by feeling the world under her feet again, and she gives me a hug, too. “I feel anchored and solid. I don’t have to think where my muscles are. I can actually think of other things.” She returns to Yuri and gives him a kiss. “I have to emphasize why this is a miracle,” says Yuri, who considers himself a data-driven skeptic. “She has almost no natural sensors. For the past 20 minutes, we provided her with an artificial sensor. But the real miracle is what is happening now that we have removed the device, and she doesn’t have either an artificial or a natural vestibular apparatus. We are awakening some kind of force inside her.” The first time they tried the hat, Cheryl wore it for only a minute. They noticed that after she took it off, there was a “residual effect” that lasted about 20 seconds, a third of the time she wore the device. Then Cheryl wore the hat for two minutes and the residual effect lasted

about 40 seconds. Then they went up to about 20 minutes, expecting a residual effect of just under seven minutes. But instead of lasting a third of the time, it lasted triple the time, a full hour. Today, Bach-y-Rita says, they are experimenting to see if 20 more minutes on the device will lead to some kind of training effect, so that the residual effect will last even longer. Cheryl starts clowning and showing off. “I can walk like a woman again. That’s probably not important to most people, but it means a lot that I don’t have to walk with my feet wide apart now.” She gets up on a chair and jumps off. She bends down to pick things up off the floor, to show she can right herself. “Last time I did this I was able to jump rope in the residual time.”

NEURAL PATHWAYS ‘UNMASKED’ “What is amazing,” says Yuri, “is that she doesn’t just keep her posture. After some time on the device, she behaves almost normally. Balancing on a beam. Driving a car. It is the recovery of the vestibular function. When she moves her head, she can keep her focus on her target—the link between the visual and vestibular systems is also recovered.” I look up, and Cheryl is dancing with Bach-y-Rita. She leads. continued on page 66 ABILITY 49

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helsea Tobin, Miss Deaf America 2006-2008, grew up on a farm in rural South Dakota. Her sparkling eyes and contagious smile are equal only to her enthusiasm and dedication to growing within, while serving others. I get my information first hand: I’ve worked with her over the last four years.

The day I met her, I entered the counselor’s office at her Pierpont, South Dakota, high school, eager to put a face to the name of this girl who had applied to take part in our state’s Youth Leadership Forum (YLF). The week-long, state-wide training program is for students, ages 15-21, who have disabilities. Within moments of her entering the room, Chelsea’s charisma, maturity, and zest for life were branded on my memory. Of course we welcomed her into the program. During the training, she seemed to naturally absorb the information we covered, including education, employment, self-advocacy, and community-service. She also began to incorporate the life skills we taught her into her daily routine. A year later, she returned to the YLF program to serve as a team leader to her peers. And the year after that, she took on the role of Master of Ceremonies for the whole, weeklong session. She’s shown leadership qualities in other areas as well, serving as a page for the South Dakota State Legislature, and, as she moved on to college, contributing to the advanced institute of the National Youth Leadership Network. Then Chelsea took the bold step of participating in the Miss Deaf South Dakota competition—and won. 50

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applied towards her Bachelor’s degree in Deaf Education with Early Childhood Certification from Augustana College in Sioux Falls, South Dakota, where she is currently a sophomore. At this writing, she was doing an internship at Metro Deaf School in St. Paul, Minnesota, and credits earned there will also be applied to her Bachelor’s. Ultimately, her goal is to serve as an outreach consultant for the South Dakota Department of State, serving families with a deaf child or deaf children.

During the competition the contestants were split into groups. Chelsea’s group consisted of (from l to r): Miss Deaf Michigan, Miss Deaf Georgia, Miss Deaf Kansas, Miss Deaf California, Miss Deaf Kentucky, Miss Deaf South Dakota, Miss Deaf New York, Miss Deaf Louisiana, and Miss Deaf District of Columbia.

“I realized by my senior year in high school that I could participate in the Miss Deaf South Dakota competition, and possibly even in Miss Deaf America,” Chelsea says. “And since I was taught to seize every opportunity, I realized that these were just that.” While she participated in the national Miss Deaf America program, a two-week event, held in Palm Desert, California, her hometown fans eagerly opened her email updates, chocked full of photos and snippets of stories she would tell us in full upon her return. The closer to the final competition, the more the hometown enthusiasm mounted. And when the final votes were tallied, Chelsea’s fans were ecstatic. Once again, she walked away with the crown, and an opportunity to serve an even larger community. As Miss Deaf America, Chelsea is the ambassador for the National Association of the Deaf (NAD), which represents about 28 million deaf and hard-of-hearing individuals across the country. She takes part in questionand-answer sessions; offers welcoming remarks at NAD events; presents awards at its ceremonies and judges its talent performances at competitions. (Chelsea’s own performance art includes theatrical interpretations of Dr. Seuss rhymes in American Sign Language). She also offers workshops around her favorite topic. “My platform is ‘Vanquishing Audism,’” Chelsea says, referring to the term given by the Deaf Community to acts of discrimination that take place due to someone’s hearing loss and/or deafness. “I wanted to choose something that directly affects the Deaf Community.” She talks to classrooms with as few as 30 students, to conference centers of 300 people or more, and, she says, “I always include the importance of self-advocacy. One’s personal actions can have a huge and powerful effect in combating discrimination in today’s society.” In late 2006, Chelsea studied at Washington DC’s Gallaudet University, a liberal-arts college that specializes in deaf culture. The credits she earned there will be 52

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“After that, the sky is the limit,” she said. “We are so lucky as young people today. There are so many opportunities and so many possibilities out there. I am excited to see what life throws at me.” by Betsy Valnes For more about the leadership opportunities mentioned above: Association of Youth Leadership Forums, www.montanaylf.org (For the link to the association, look toward the bottom of the lefthand column.) Youth Leadership Forums (YLFs) are state-specific leadership programs for high school-age students with disabilities. National Youth Leadership Network, www.nyln.org The National Youth Leadership Network (NYLN) is a nation-wide, youth-led, non-profit organization for young people with disabilities between the ages of 16 and 28. National Association of the Deaf/Miss Deaf American Program, www.nad.org/mda. The Miss Deaf America Program is a bi-annual leadership competition for young women who are deaf or hardof-hearing. Gallaudet University, www.gallaudet.edu, is a liberal-arts college in Washington DC. It provides Bachelor’s and graduate programs for deaf, hard-of-hearing and hearing students. Betsy Valnes has traumatic brain injury and anomia. She is an active member of the disability movement both in the United States and abroad. She serves as the executive director for the National Youth Leadership Network (NYLN) and the National Youth Information Center (NYIC). NYLN and NYIC represent the first solely youth-led nonprofit organization and federally supported alliance of organizations for young leaders with disabilities in the U.S. and its territories. She also serves as a mentor for the National Council on Disability’s Youth Advisory Committee. Chelsea is surrounded by family after she was crowned. Left to Right: Evelyn, Shauna, Chelsea, Rachel and Rodney Tobin, and Aunt Ellen Wilts.

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ick Kneeshaw and Gladys Swensrud couldn’t believe it was true. Long-time members of the Zoological Society of San Diego, both visited the zoo frequently, at least until they started to use motorized scooters. That’s when they encountered a major speedbump.

The ADA was enacted to eliminate discriminatory assumptions and attitudes like the zoo’s. In fact, the law was passed partly in response to a story about a zoo that turned away children with Down’s syndrome because the zookeeper “feared they would upset the chimpanzees.”

Swensrud was an avid hiker, before post-polio syndrome limited her mobility. Her frequent visits to the zoo were to photograph animals. She’d been there every other Sunday morning since 2001. But in March 2005, she was pulled out of the entrance line—in front of everyone—and told to sign a multiple-page liability waiver. When she refused, the zoo staff told her that if she went inside, the waiver would apply anyway.

Gaining access to recreation and staying involved in society are significant concerns for the disability community. Members are almost twice as likely to say they feel isolated from others, and one and one-half times as likely to say they feel left out of community events, compared to people without disabilities, according to a National Organization on Disability report. They attribute to “fear or perceived negative attitudes” the fact that 20 percent fewer people with disabilities participate in community events, than people without disabilities.

For Rick Kneeshaw, who also has post-polio syndrome, trips to the zoo were a family tradition. Get straight A’s, go to the zoo. It’s your birthday, go to the zoo. But in September 2004, when he went with his wife and twoyear-old granddaughter, they encountered the same unfortunate surprise as Swensrud. A zoo employee saw Kneeshaw on his motorized scooter, pulled him out of the line and insisted he sign the waiver. Both Swenrud and Kneeshaw found the experience humiliating. No one else was pulled out of line. Kneeshaw said he felt additional pressure, because he perceived himself to be holding up those behind him, and because his granddaughter was anxious to get inside to see the elephants, so he signed the document and went in. When he got home later that day, he had time to read the waiver closely. It released the zoo from any liability. Visitors who signed it, gave up the right to sue for any injuries or damage incurred during the visit, even if it was based on the zoo’s negligence. The waiver also required the person with a disability to pay to defend the zoo from any lawsuit by a third party. Immediately, Kneeshaw wrote to the zoo, asking them to discontinue the policy. He and Swensrud refused to accept second-class treatment and contacted the Disability Rights Legal Center (DRLC), which filed a classaction suit on their behalf (Kneeshaw and Swensrud v. Zoological Society of San Diego). It challenged the zoo’s policy under the Americans with Disabilities Act (ADA) and California civil-rights law. The zoo said it was a safety issue; the plaintiffs said it was discrimination. Under the zoo’s policy, every person who used a motorized wheelchair or scooter was pulled from the line, and told to sign a waiver and indemnification agreement, before they could enter the zoo as well as the San Diego Wild Animal Park. But the ADA prohibits public accommodations from providing unequal benefits to people with disabilities, or imposing requirements that prevent such a group from enjoying the same services as anyone else.

The lawsuit against the zoo sought, in part, to address such feelings of isolation. It was filed in November 2005 in a U.S. District Court in San Diego. After a year of negotiation, the zoo and Wild Animal Park agreed to stop the entrance policy, and no longer make users of motorized wheelchairs and scooters sign waivers. For those who’ve already signed them, all waivers on file are considered to be null and void. The zoo will continue to provide visitors with its comprehensive access guide to people with disabilities. According to Kneeshaw, the lawsuit “was certainly worth the effort, as I feel as though we have not only set a standard legally, but in some way have left a legacy for others to follow.” Though he had not returned to the zoo as of this writing, Swensrud had visited twice since the lawsuit was settled last November. “It was actually a feeling of relief to freely enter without the fear of being treated differently from other visitors, and without fear of being held solely responsible, should something happen while on their grounds,” she said. “Although it was difficult to challenge an organization I have long supported, the stance [that] the Zoological Society of San Diego took when they instituted the flawed entrance policy... was clearly wrong. To get involved in changing that policy was plainly the right thing to do.” by Paula Pearlman and Eve Hill Disability Rights Legal Center copy of the agreement is on www.disabilityrightslegalcenter.org Someone told me It’s all happening at the Zoo. I do believe it, I do believe it’s true. Simon & Garfunkel

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urt Weston began his career in the 1980s as a fashion and commercial photographer. Living in Chicago, he scored sought-after jobs with cosmetology giant Pivot Point International and noted art studio Stephens, Biondi and DeCicco. His work appeared in glamour magazines and beauty publications throughout the world. Then, Weston began to notice opaque spots (called “floaters”) swirling in his vision as he snapped photos of the models. After months of brushing off the symptoms, he finally had them evaluated—they were the beginning of an AIDS-related vision disease called cytomegalovirus (CMV) retinitis. Though most people with CMV never develop CMV-related diseases, the commonplace virus can cause severe illness in those with compromised immune systems. Weston became legally blind in 1996, eventually losing all vision in his left eye and all central vision in his right. Shortly after his diagnosis, Weston moved to southern California to be closer to his father and brother. Before the advent of modern pharmaceuticals, AIDS and its complications often produced a rapidly progressive illness. Given a diagnosis of six months to live, Weston thought he was coming out to California to die. Miraculously, his health returned through the use of new breakthrough protease inhibitor drugs, but his sight could not be restored. It seemed Weston’s career as a photographer was over. With his health improving, he began to explore his community, getting involved with a local nonprofit support program called Asian Pacific Crossroads. When the organization decided to put together an art calendar to raise money, he agreed to shoot some photography scenes. It was then he realized he could still take pictures, aided

both by magnifying devices and by his own intuition from years of photography experience. Excited, Weston began to seek out services that would train him to use visual assistance products. He attended the Braille Institute, a network of five regional centers throughout southern California that provide educational, social and recreational services to people who are blind, and eventually came in contact with the California Department of Rehabilitation’s office in Anaheim, California. Several years later, on the opposite coast, in September of 2001 Don Katz, a graduate student at New York University, fell ill to a severe case of spinal meningitis that left him comatose for several weeks. When he eventually awoke, he was blind and temporarily paralyzed. After six months in the hospital and hours of rehabilitation daily, Katz’s mobility had returned, but his sight never did. Shortly thereafter, he relocated to Orange County, California, and contacted the Department of Rehabilitation for help in negotiating his life with vision loss. The mission of the Department of Rehabilitation (DOR) is to assist people with disabilities in getting work for the first time, help them return to work or retrain for a new career following the onset of a permanent disability, and assist them in retaining their jobs once they’ve been hired. The Department of Rehabilitation can help by providing vocational counseling, referrals to community agencies and support for vocational training. Typical services include financial assistance for higher education, help in identifying and acquiring adaptive technology, and assistance with job development and placement—including help with resume writing, interviewing skills and strategies for discussing disability with a potential employer. ABILITY 55

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Within the larger agency of the Department of Rehabilitation, a specialized division known as the Blind Field Services works specifically with clients who have partial or total vision loss. As Teri Hershberg, a counselor in the Blind Field Services, explains, “Due to the unique and comprehensive needs of people with sight loss, our division provides expertise which we feel surpasses the knowledge of the general counselor.” In fact, the majority of the counselors who work in the Blind Field Services division, including the manager of the division and the deputy director, are blind or have some vision loss themselves. Through the Department of Rehabilitation and the guidance of Hershberg (his counselor and also his former instructor at the Braille Institute), Weston was able to attend classes at Junior Blind of America in Los Angeles, where he learned mobility skills and became familiar with assistive technology. He later received a grant through the Social Security PASS Program (an acronym for Plans for Achieving Self Support—a program permitting beneficiaries to set aside money for equipment or training needed to reach their individual goals), allowing him to purchase types of photography equipment that could be used more easily by a person with vision loss. Since then, Weston has displayed his photographs in museums across the United States, including an international show at The Kennedy Center in Washington DC. He is currently working on his master of fine arts thesis at California State University-Fullerton, where he maintains a 4.0 GPA. Weston views the world as if it were an Impressionist painting—his left eye can see some light but no form or shapes, and his right eye has only slight peripheral vision. He explains that his Blind Vision series is a “visual autobiography of the psychological and emotional impact sight loss has had on me as a visual artist.” Similarly, Katz has used the services from the Department of Rehabilitation both to enhance his daily activities and to launch a new career. Culinary arts have always been an outlet for creativity for him—before his injury he pursued a college major in hospitality management at San Francisco State University, with a concentration in restaurant management, and later went on to receive his master’s degree in food studies. With help from the Department of Rehabilitation’s Homemaker Program, he obtained computer technology such as Freedom Scientific’s JAWS program, which reads information from the computer screen aloud, and Pulse Data’s BrailleNote products, personal data assistants designed for people who are blind. These technologies have helped him both personally and professionally, and he currently owns a thriving business in Irvine, California, called the Symposium Wine Bar. Both Weston and Katz credit much of their success to Teri Hershberg and the services they have received through the Department of Rehabilitation. by Jessica Tappin For more information on the California Department of Rehabilitation, visit www.dor.ca.gov For readers residing outside California, you may locate your local department of rehabilitation by looking in your state government listings.

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rom a deaf actor who overcame her fear of using her voice on camera, to a filmmaker who documented the life of a brother with Down’s syndrome, to a comedian with cerebral palsy who won NBC’s Last Comic Standing, the recent 24th annual Media Access Awards (MAW) celebrated those who often go unsung. The event drew a crowd of more than 500, some coming from as far away as Israel and Ghana. Presented by the California Governor’s Committee on Employment of People with Disabilities and the state Employment Development Department (EDD), the awards honored individuals, productions and companies that accurately portray people with disabilities in the media, and increase employment opportunities for people with disabilities in the entertainment and media industries. Past honorees include Aaron Spelling, Anthony Edwards, Carrie Fisher, Garry Marshall, Jane Pauley, Kirk Douglas, Melissa Gilbert, Patty Duke and Ray Charles. The evening unfolded at Universal Studio’s Globe Theater, and began in true Hollywood fashion with a gourmet reception set outdoors in a backlot studio dressed as a quaint European street. After dining and mingling, attendees moved inside for the awards ceremony, presented with the assistance of numerous Hollywood performers and professionals. Made possible by donations from Union Bank of California, M Squared, Southern California Edison, Genentech, Paramount Pictures, CBS and ABC/Disney Television Group, the evening was a celebration of the important role the media and entertainment industries play in broadening the education of the general public, and promoting a society that understands and values the experience of disability. Actor Michael J. Fox, who was diagnosed with Parkinson’s disease in 1991 and came out publicly about it in 1998, received the Governor’s Award of Excellence. Musician Jose Feliciano took home the AFTRA Disability Awareness Award, while actor Robert David Hall of

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CSI received the AFTRA Disability Awareness Award. Hall has worked as an actor as well as a disability advocate since 1978, when he lost his legs in a car accident. The Writer’s Guild of America West presented the Joan Young Award to writer Katharyn Powers, who lives with Chronic Fatigue Syndrome; the Casting Society of America Award went to Fern Orenstein; and actress Deanne Bray got the Screen Actor’s Guild Harold Russell Award. Bray accepted the award as the first deaf actor to get the leading part in a television series for the show, Sue Thomas: F.B. EYE, based on the true story of Thomas, who worked for the F.B.I. as a lip reader. Bray said Thomas, on whom her character is based, had a hard time landing a job after college. “In interview after interview, people would focus on what she couldn’t do, like talk on the phone, as opposed to what she could do. Later, she accepted a job at the F.B.I., not as a lip reader, but counting fingerprints—literally counting tiny lines—and Thomas knew she could do more than that.” Through a friend on the force, who discovered her talents, she got an opportunity to advance. Bray, who has played Thomas for three seasons, described her initial fear of using her voice on screen when her agent told her about the part. During auditions, she saw hearing actors with acting coaches who tried to teach them to talk like someone deaf or hard of hearing. But Bray later learned that Thomas pressed for an actual deaf person to take the part, because a “deaf actor would deeply understand her path, her experience.” It was compassion for his little brother, Danny, who has Down’s syndrome, that led Matthew Makar to spend a few years living in his parent’s basement to subsidize Yellow Brick Road. The film, which showed on HBO/Cinemax, took an award in the TV documentary category. The seeds of the idea germinated four years ago, when Danny was on the verge of quitting his acting group. He was frustrated at being typecast as an Oompa Looma in Willy Wonka and the Chocolate Factory and other productions, but Makar convinced his brother not to quit. He not only offered to film Danny and his troop’s performance, but also to give a special screening at a local movie theater.

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In the Reality TV category, comedian Josh Blue won for his performances on NBC’s Last Comic Standing, where he bested a field of his peers. Blue, who has cerebral palsy, and playfully describes his comedy as “spastic and engaging,” is also a talented U.S. Paralympic soccer player. On Last Comic, Blue used humor to engage the audience openly about his disability, quelling fears, stereotypes, and insecurities. About his condition, he jokes: “I realize that people are going to stare, so I want to give them something to stare at.”

A CLOSE-UP ON MORE WINNERS In Reality TV, Little People, Big World received an award. Matt Roloff, whose family is depicted in the series, thanked the Discovery channel for “their courage to present our family story in a way that was non-sensational. Viewers didn’t necessarily need to be entertained, but could relate to us as little people and as fellow human beings.” The HBO documentary I Have Tourette’s But Tourette’s Doesn’t Have Me gives voice to children living with the neurological condition characterized by repetitive, involuntary, vocal and motor tics that persist over time. Prime Time TV shows that received awards included My Name Is Earl, nip/tuck and The Office, the latter which makes fun of political correctness and hesitancies about approaching people with differences. In the TV commercials category, Ford Motor Company accepted an award for Bold Moves, which shows a soccer player jumping, kicking, scoring and then later removing a prosthetic leg. Outstanding achievements in film included a documentary award for The Devil and Daniel Johnston, and for Outstanding Achievement in features, The Family Stone. The latter includes not only a character who is deaf, but who is also played by the deaf actor, Ty Giordano. Several of the outstanding achievements in film were international, including documentary awards that went to Emmanuel’s Gift (Ghana), 39 Pounds of Love (Israel), and the short-film entry Nectar (Britain). Emmanuel’s Gift is the story of Emmanuel Ofosu Yeboah, a Ghanaian youth who has fought for disability rights in his country, which are desperately needed as 2 million of the 20 million people there are disabled. His means of getting his message across: riding his bicycle more than 600 kilometers across Ghana—with a severely deformed leg. The doc 39 Pounds of Love, tells the journey of 34-year-old Ami Ankilewitz who, from a fatal form of Spinal Muscular Atrophy, weights only 39 pounds. He confronts the doctor who diagnosed him as well as his own fate. While the short-film Nectar centers around an Olympic-caliber deaf swimmer in the year 1930. The latter project had the good fortune to get distribution with valueadded accessibility options unprecedented in Britain, including closed captioning, audio description for the blind and British Sign Language interpretation. Finally, in the theater, Open Window was celebrated for being presented in sign-language to a hearing audience, who were provided with subtitles. by Jacqueline Bowler Top clockwise: Dr. Gillian Friedman, Allen Rucker; Daniel Chafen, Sara Sidle, Robert David Hall, Dani Menkin; Mathew Makar, Danny Makar; Dr. Paul Miller on the Jumbo Screen; Hall and friends; Union Bank of California sponsors including Randy Lowe

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IME Magazine correspondent Michael Weisskopf was riding through Baghdad in the back of a U.S. Army Humvee, an embedded reporter alongside soldiers from the First Armored Division, when he heard a metallic thunk. Looking down, he saw a small, dark object rolling inches from his feet. He reached out and took it in his hand. Then everything went black.

help the legless take a shower or the one-armed tie a shoe, therapists offered new strategies, from bath stools to elastic shoelaces. Leg amputees learned how to jump out of bed without falling on their faces and get in and out of a model car from a wheelchair. Arm amputees practiced hanging shirts, cooking and sweeping the floor of a mock apartment named Fort Independence.

Weisskopf lost his hand and was sent for treatment to Ward 57 at Walter Reed Army Medical Center, the wing of the armed-forces hospital reserved for amputees. Alongside soldiers there, he navigated the bewildering process of recovery and reentry into everyday life.

OT returned the real world to patients who had dropped out of it. Everyone trained together in an atmosphere set up for comradeship and comfort. No one paid attention to rank or age. They bonded over a common plight and debated endlessly which limb was worse to lose: an arm or leg. The patients got to play their favorite music and help themselves (if they could) to candy bars, gum and beef jerky from a cabinet. A bulletin board posted hometown newspaper reports on their injuries.

Blood Brothers, Weisskopf’s new book, chronicles the tale of this difficult passage—for him as well as hundreds of others. It’s a story that begins with healthy men heading off to a war zone, and continues through the months in Ward 57 as they prepare their minds and bodies for a life very different from the one they left. A narrative of devastation and recovery, Blood Brothers is a deeply affecting portrait of the private aftermath of combat casualties—the battle after the war. Here is an excerpt. Room 3J04 pulsated with the sounds of heavy metal, wailing electric guitars and crashing drums. I entered in a manual wheelchair pushed by a hospital orderly, and was greeted by a black, soulshaking colonel and a pair of one-legged soldiers playing foosball. No, it wasn’t a morphine dream. I had landed in occupational therapy. Located two floors below Ward 57, OT might as well have been another planet. The name made it sound like a job training center. Instead, it helped to get bodies working. This was boot camp for amputees, training for life without limbs. The clinic held out potential to patients who thought they had none, a place to stop grieving and learn how to compensate with technology and ingenuity. The motto was, “Whatever Works.” Usually that meant use of artificial limbs. But when a prosthesis couldn’t 60

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Captain Katie was the queen of OT. When she came to 57 on my first day for an assessment, she asked for my recovery goals. “Return to my abnormal life,” I told her. By the time I started OT in the late afternoon of December 26, she had drawn up a baseline charting the distance I had to go. I still needed supervision to safely reach a toilet and “moderate” aid in unbuttoning and zipping after I arrived. I couldn’t bathe or put on pants without help. Katie ordered me up from the wheelchair to check my posture. I walked down the hall with my stump folded like a broken wing, listing badly to my right side. She directed me to straighten up, raise my head and swing my short right arm as freely as I did my left. My port side was getting a lot of attention. Now that I was a southpaw by necessity, I had to get my brain used to the new boy in town. Katie gave me shoestrings to lace, buttons to close and sentences to write on notebook paper. I’d do it and she’d have me do it again—only faster. On December 30, I was promoted to her hottest class: Bionic Hands 101. Myoelectric is the non-sci-fi name for bionic. A myoelectric hand works off tiny electrical signals released when muscles (myo is the Greek word for muscle) are contracted. The signals are picked up by electrodes that line the inside of a prosthesis, and cover the muscles of

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a stump. Electrodes send the signal to a computer chip that instructs an electronic hand to open, close or rotate—depending on the muscle flexed and the speed and intensity of its contraction. For long stumps like mine, forearm muscles located three inches below the elbow drove the process. Flexing the one on the outside of my forearm signaled a hand to open. Tensing the inner muscle would close it. The technology mimicked nature. Katie held out a cup and told me to grab it with my good left hand. I felt the inner muscle tighten as I grasped it. The outer muscle relaxed when I let it go. The first lesson focused on how to isolate those muscles. Captain Katie had a tool, called Myo-boy, as high tech as the device I hoped to incorporate. She strapped electrodes onto each forearm muscle and plugged the other end of a cord into a laptop computer. The object was to generate a spike on the monitor by flexing the right muscle. It was more difficult than it looked. I jerked, twitched, and turned my stump. Nothing happened. I pumped again, hunting for the right spot, but the monitor stayed blank. When I grew frustrated, Katie had me close my eyes to map the muscle in my mind. I contracted. She let out a cheer: “You did it.” I opened my eyes and saw a tiny streak on the monitor. I squeezed, again, sending the spike higher. I was getting stronger. Unfortunately, as I kept practicing, the computer indicated that I was firing both muscles at the same time. I closed my eyes again and accessed my outside one. Katie released another yelp of encouragement. I finally managed to distinguish one muscle from the other and triggered each separately so as not to send conflicting signals. Manipulating those tiny muscles was exhausting. I felt as if I had pressed two hundred pounds. My hospital gown was soaked in sweat. Over the course of the next week, I spent at least an hour a day working on the Myo-boy, graduating to new levels of virtual reality. One was a monitor that showed cars careening toward a brick wall. I could lift the car and avoid disaster by flexing the right muscle. I took turns connecting the electrode to the inside and outside of my forearm, compiling a good enough driving record

to increase the challenge. Katie ran two cars at the same time, each controlled by a different muscle. Finally, I simulated the mechanics of a virtual hand, including the wrist rotation I had paid so dearly for. It took an extra step, hitting both muscles at the same time. That would change the gears of the hand, preparing it to turn clockwise when I squeezed the outer muscle and counterclockwise with the inner muscle. Katie spent the last ten minutes of each session massaging my stump. She pressed hard on the scar tissue to keep it flat and supple. The kneading also gave me comfort. Once the pain of surgery had subsided after Christmas, I began to suffer the bane of amputees: phantom limb pain. When I first heard the term, I thought it sounded like a form of self-delusion, a mind game of amputees who couldn’t accept their loss. How could something that didn’t exist hurt? The name recalled a favorite childhood action figure, the Phantom. But I certainly wasn’t fantasizing the deep ache in what had been my right hand. Sometimes I felt as if my fist was clamping tighter and tighter until my fingers were ready to explode. The pain brought back memories of that horrible night in the Humvee. In those moments, my hand felt as if it were cupped around a hot object, burning and throbbing as it did after the explosion. At other times, the Phantom could create the sensation of twisted fingers or a bent thumb. Sometimes, it was an annoying tickle on the heel of my hand. Virtually everyone on Ward 57 had some phantom limb pain. Its cause remained as mysterious as it had been when a Civil War doctor coined the term to identify the complaints of soldiers whose injured limbs had been sawed off. Their symptoms had been dismissed as psychosomatic, but today’s doctors recognized the pain as a bona fide neurological condition. Nerve endings that had naturally extended to the fingers of my right hand no longer had a place to go; they were frantically crashing into one another, sending pain signals to my brain and tricking it into thinking I ABILITY 61

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still had a hand. Some experts believe the brain has a blueprint of body parts that persists even if they’ve been cut off. According to one theory, when the brain sends signals and receives no feedback, it bombards the missing limb with more signals. That aggravates the swollen nerves that once served it, inducing pain. Doctors were as hard-pressed to treat phantom pain as they were to explain it. They resorted to trial and error, using remedies originally intended for other ailments that seemed to relieve nerve pain. I had a sampling on my nightstand: pills to combat seizures and depression, lozenges for bronchitis, allergy nasal spray, arthritis cream, medicated patches for shingles and an electro-stimulation device. It was hard to tell if any of them worked. The crushing, stabbing pain in my right hand flared and subsided—but never went away. Doctors said it might last a month, a year or a lifetime. Every amputee was different. I had resolved that 2004 would be the Year of the Phantom. Phantom pain was a daily topic at OT, the whittling porch for amputees. I made my first friends there. I’d been in no mood for small talk the first two weeks on 57. Most of my neighbors were half my age and from different backgrounds, smalltown boys who had passed up college or bluecollar trades for a military life. I was urban, overeducated, untattooed and distrustful of uniforms and blind patriotism. But I soon discovered that I shared something with those soldiers larger than the differences in our biographies. We were men struggling for identity. The psychological scars of amputation ran deeper than those from conventional wounds of war. The blasts took away something deeply personal. None of us felt like the man who had gone to Iraq. We possessed the same minds; they just resided in different bodies. The loss of my writing hand launched an assault on my self-image. If I couldn’t be a reporter, then who was I? What would I do? The questions left me raw and wide open, no more so than my new friends who had honed their bodies for a completely different cause: war. The military represented the perfect synthesis of muscle and discovery, a place to play out feelings of invincibility. Now they confronted the world from a wheelchair or without an arm. Life looked different with no war to fight, orders to follow and comrades to love. The question was how to fill the void, and with what. No one knew what to make of me at first. I was rumored to be a colonel who had stumbled into harm’s way. Fortunately, the suspicion was short-lived—soldiers had even less regard for officers than for reporters. Once word got out that I had coauthored TIME’s cover story on 62

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Top: Sergeant Pete Damon in Kuwait, a few weeks before he lost both hands in a freak accident in 2003; Center, Corporal Bobby Isaacs later lost both legs in a blast in Iraq and Sergeant First Class Luis Rodriguez lost his right leg in Kuwait.

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the American soldier and saved a couple of privates, I was let into the club. No one knew my name—I became known as “the reporter who ate the grenade.” Most of my interactions with other amputees took place off the ward, in more friendly territory like OT or the hospital cafeteria. We swapped stories of our injuries, compared notes on painkillers, and competed on the Myo-boy. The arrival of someone’s prosthesis created a lot of excitement. Everyone would wait for him to strut into OT to show it off. I felt at home in the small universe of men, who, like me, were trying to figure out what was left of them and the lives they once led. We had the privilege of working through our pain, insecurity and clumsiness without the stares and questions of outsiders. Not everyone enjoyed the company. The tone in OT could shift from laughter to grave silence in the moment it took a soldier to scream in pain or explode into anger. Captain Katie segregated the angriest amputees. If they wanted to poison the atmosphere, they’d have to do it together. Her morning sessions bristled with tension. Metallica and Motorhead blared from speakers. Amputees leaned back in their wheelchairs and spun the wheels. One specialist who had trouble picking up a peg with his above-the-elbow prosthesis flung the $115,000 device against a wall. “I ain’t doing it anymore,” he shouted. Another threw the metal pedal of his wheelchair into a costly exercise machine. My own moods fluctuated between anger and joy, frustration and triumph. But a feeling of melancholy prevailed as I came face-to-face with the larger tragedy beyond my own: stolen youth. The above section is excerpted with permission from Blood Brothers by Michael Weisskopf, copyright 2006 by Michael Weisskopf and published by Henry Holt and Company. Blood Brothers is available now through retail bookstores and at www.henryholt.com. A senior correspondent for TIME Magazine, Michael Weisskopf is a Pulitzer Prize finalist and a winner of the George Polk Award, the Goldsmith Award for Investigative Reporting, the National Headliners Award and the Daniel Pearl Award for Courage and Integrity in Journalism. He lives in Washington DC. Top: Sergeant Pete Damon throws out the first pitch at a 2005 Boston Red Sox game; Center, Corporal Bobby Isaacs endures occupational therapy; Sergeant First Class Louis Rodriguez, fitted with a prosthesis, stands before a memorial to his infantry regiment’s fallen soldiers.

Michael Weisskopf

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ACROSS 1. Awards for contribution in promoting awareness and dignity for people with disabilities 8. TV Show cast by Jeanie Bacharach that helped her win an award for including characters cast in typical roles with no reference to their disability: “Judging ___” 10. __ __ carte? 11. He was famous for spoon bending 12. Mode of transport 13. Commonplace 16. “Live and ___ Die” movie 18. Over, poetically 20. “I just called to say I love you” singer 23. Goal 25. Zodiac sign 26. Why, why, why, in a way! 27. Expression of understanding 29. “Make him an ___ he can’t refuse” : notorious Godfather line 31. Past recipient of a 1 across award: he starred in “Lust for Life” portraying Vincent Van Gogh 33. Government Agency that presents the awards in 1 across 35. Dr. ___ : Goldmember character 37. Another TV show where Jeanie Bacharach’s casting led to her getting the Casting Society of America award (goes with 1 down) 38. A can __ person 39. She 41. You and me 42. Won __ __ nose 43. Actress who was a past honoree of 1 across and played Princess Leia in Star Wars (first name) 46. President of Actors for Autism, first name 47. Yes in the navy 49. Actress Pauley who was a past honoree of 1 across 51. “____ feet under” was an HBO show addressing disability issues, leading to HBO receiving an award at 1 across 53. Poorly lit 54. “Much __ about nothing” Shakespeare 55. “___ your enthusiasm”: another HBO show which addressed disability issues 57. Ouch! 58. Celebrity 59. “____ Betty” show 60. She played Helen Keller in “Miracle Worker” (last name) 61. Agrees silently

DOWN 1. See 37 across 2. HBO show featuring Wild Bill Hickock and Wyatt Earp 3. “Charlie’s Angels” producer who was a past honoree at 1 across 4. “We’re in this love together” singer, Jarreau 5. “___ woman” starring Halle Berry 6. Percussionist, ___ Tuduri, who received the Michael Landon award at 1 across for her commitment to the advancement and inclusion of people with disabilities in the media industry 7. Deaf FBI analyst in 30 down, first name 8. Trouble 9. Still 14. Character with muscular dystrophy in “Inside I’m dancing” (first name) 15. “Phenomenon” star, last name 17. Alien who was too good for earth 19. Instant messenger, for short 21. Color 22. Jane Austen novel, “Jane ___” where one of the main charcters is blinded 24. The Big ___ 27. TV show honored at 1 across for its accurate portrayal of a character with a disability: “___ my children” 28. Cut in two 30. TV show honored for its accurate portrayal of a deaf FBI analyst 31. British princess 32. “Mork and Mindy” writer, Marshall 33. Former ER star who was a past honoree of 1 across, last name 34. A John who gets sued a lot! 36. Blue Ridge Mountains locale 39. They produced “Angels of America” 40. Film about an amazing blind jazz singer that won an award at 1 across 43. Wild dance 44. Naval rank, abbr. 45. Plural suffix 46. “___ Mullen Reports” TV program that was honored at 1 across 48. Former lover 49. Blind singer, Feliciano 50. French currency 52. Unproductive 54. Reverence 56. “Riding the ___ with my Sister” show 57. Approve ABILITY 65

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continued from page 46

How is it that Cheryl can dance and has returned to normal functioning without the machine? Bach-y-Rita thinks there are several reasons. For one, her damaged vestibular system is disorganized and “noisy,” sending off random signals. Thus, noise from the damaged tissue blocks any signals sent by healthy tissue. The machine helps to reinforce the signals from her healthy tissues. He thinks the machine also helps recruit other pathways, which is where plasticity comes in. A brain system is made of many neuronal pathways, or neurons that are connected to one another and working together. If certain key pathways are blocked, then the brain uses older pathways to go around them. I look at it this way,” says Bach-y-Rita, “If you are driving from here to Milwaukee, and the main bridge goes out, first you are paralyzed. Then you take old secondary roads through the farmland. Then, as you use these roads more, you find shorter paths to use to get where you want to go, and you start to get there faster.” These “secondary” neural pathways are “unmasked” or exposed and, with use, strengthened. This “unmasking” is generally thought to be one of the main ways the plastic brain reorganizes itself. The fact that Cheryl is gradually lengthening the residual effect, suggests that the unmasked pathway is getting stronger. Bach-y-Rita hopes that Cheryl, with training, will be able to continue extending the length of the residual effect. A few days later, an e-mail for Bach-y-Rita arrives from Cheryl, her report from home about how long the residual time lasted. “Total residual time was: 3 hours, 20 minutes… The wobbling begins in my head—just like usual… I am having trouble finding words… Swimming feeling in my head. Tired, exhausted… Depressed.”

walking. Some had the same damage Cheryl had; others have had brain trauma, stroke, or Parkinson’s disease. Paul Bach-y-Rita’s importance lies in his being the first of his generation of neuroscientists both to understand that the brain is plastic and to apply this knowledge in a practical way to ease human suffering. Implicit in all his work is the idea that we are all born with a far more adaptable, all—purpose, opportunistic brain than we have understood. When Cheryl’s brain developed a renewed vestibular sense—or blind subjects’ brains developed new paths as they learned to recognize objects, perspective, or movement—these changes were not the mysterious exception to the rule but the rule: the sensory cortex is plastic and adaptable. When Cheryl’s brain learned to respond to the artificial receptor that replaced her damaged one, it was not doing anything out of the ordinary. Recently Bach-y-Rita’s work has inspired cognitive scientist Andy Clark to wittily argue that we are “natural— born cyborgs,” meaning that brain plasticity allows us to attach ourselves to machines, such as computers and electronic tools, quite naturally. But our brains also restructure themselves in response to input from the simplest tools too, such as a blind man’s cane. Plasticity has been, after all, a property inherent in the brain since prehistoric times. The brain is a far more open system than we ever imagined, and nature has gone very far to help us perceive and take in the world around us. It has given us a brain that survives in a changing world by changing itself. Reprinted by arrangement with Viking a member of Penguin Group (USA) Inc., from The Brain That Changes Itself by Norman Doidge, MD. Copyright © Norman Doidge, MD 2007

A painful Cinderella story. Coming down from normalcy is very hard. When it happens, she feels she has died, come to life, and then died again. On the other hand, three hours and 20 minutes after only 20 minutes on the machine is a residual time 10 times greater than the time on the device. She is the first Wobbler ever to have been treated, and even if the residual time never grows longer, she could now wear the device briefly four times a day and have a normal life. But there is good reason to expect more, since each session seems to be training her brain to extend the residual time. If this keeps up…

NO LONGER A WOBBLER It did keep up. Over the next year, Cheryl wore the device more frequently to get relief and build up her residual effect, which progressed to multiple hours, to days, and then to four months. Now she does not use the device at all and no longer considers herself a Wobbler.

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Cheryl has not been the only one to benefit from Bach-yRita’s strange hat. The team has since used the device to train 50 more patients to improve their balance and

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