ABILITY Magazine - Alfred Molina

MAGAZINE

VOLUME 2010-11

ALFRED MOLINA

DEC/JAN

THE VOICE OF OVER 50 MILLION AMERICANS

$4.99 Volume 2010-11 ALFRED MOLINA DEC/JAN

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M ANAGING E DITOR Gillian Friedman, MD

M ANAGING H EALTH E DITOR E. Thomas Chappell, MD

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

H UMOR W RITERS

Jeff Charlebois George Covington, JD Gene Feldman, JD

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ASHLEY’S COLUMN — Girls Ride ACUPUNCTURE — Ancient Chinese Secret, Revealed!

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APHASIA: THE MOVIE — A Film Beyond Words

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LOVE SIMPLE — Lights! Camera!...Lupus?

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TRAIL MIX — The Wilderness Made Accessible

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AMPUTEE RECOVERY — From the Middle East to Haiti

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LACHI — A Voice in the Darkness

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LAURA HOGIKYAN — The Play’s the Thing

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CREATIVE ARTS FESTIVAL — Veterans with Artistic Vision

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A TRIP TO GERMANY — Disability and Deutchland

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A DAY IN THE LIFE — Nursing with a Movement Disorder

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ALFRED MOLINA — Law & Order and the Injustice of AIDS

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MALCOLM SMITH — A Ride Down Memory Lane

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SHAKES — Parkinson’s Disease

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VICTORIA TAYLOR — Excerpt From Caitlin’s Wish

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SALLY FRANZ — Excerpt From Scrambled Leggs

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CROSSWORD PUZZLE, EVENTS & CONFERENCES

Music Within

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Paralympic Games Beijing

SENATOR TOM HARKIN — IDEA 35 Years Extremity Games

Alfred Molina interview with Regina Hall p. 42

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Dahvi Fischer Renne Gardner Regina Hall Stan Hoskins Molly Mackin Josh Pate David Radcliff Denise Riccobon, RN Jane Wollman Rusoff Maya Sabatello, PhD, JD Romney Snyder

H EALTH E DITORS

Larry Goldstein, MD Natalia Ryndin, MD

C ONTRIBUTING W RITERS Love Simple p. 16

Malcolm Smith p. 50

Ashley Fiolek Gale Kamen, PhD Laurance Johnston, PhD Andrea Kardonsky Deborah Max Myles Mellor - Crossword Puzzle Paula Pearlman, JD Allen Rucker Kristen McCarthy Thomas Betsy Valnes

W EB E DITOR

Mary Shafizadeh

G RAPHIC A RT / I LLUSTRATION ABILITY’s Crossword Puzzle

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Scott Johnson Melissa Murphy - Medical Illustration

P HOTOGRAPHY

Nancy Villere— CrushPhotoStudios.com NBC Universal Media

T RANSCRIPTIONIST Prosthetics p. 21

Sandy Grabowski

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The views expressed in this issue may not be those of ABILITY Magazine Library of Congress Washington D.C. ISSN 1062-5321 © Copyright 2010/11 ABILITY Magazine

The ABILITY Build program outreaches to volunteers with disabilities to help build accessible homes for low income families. We are currently seeking corporations, organizations and churches to sponsor more homes. This award-winning program builds homes and awareness, changing the lives of everyone involved. abilitybuild.org info@abilityawareness.org abilityawareness.org

While in school, Frank was told he could be one of three things: a cobbler, a printer’s assistant, or a baker. He said he didn’t want to be any one of those things. His teacher said, “Okay, you’re going to be a baker.”

But over time, the law we now know as IDEA has borne amazing fruit. Today, the majority of students with disabilities are in general education classrooms at least 80 percent of the day. And who made this possible? You did! Parents, families, teachers, therapists, advocates, and communities who refused to accept a medieval status quo for our children.

35 YEARS OF PROGRESS THANKS TO IDEA Dear ABILITY readers, November 18 marked the 35th anniversary of Public Law 94-142, now known as the Individuals with Disabilities Education Act (IDEA). This is a tremendously important and successful law, and it embodies a simple but radical idea: every child can benefit from an education, and has a right to a free and appropriate public education.

Many people today might say this right is self-evident.

Three and a half decades ago, however, that was far from the case. Prior to 1975, children in the United States with intellectual disabilities, physical disabilities and sensory disabilities were not guaranteed access to a public education. In many cases, children with disabilities had little choice but to remain at home with their families. Many were shut out of their local schools, shunned by a society that could not see the benefit of educating children who had intellectual disabilities, cerebral palsy, spina bifida, hearing impairments, visual impairments, or other disabilities.

I understand this historical fact only too well. My older brother, Frank, lost his hearing at an early age. He was taken from our home, our family and our community, and sent clear across the state to the Iowa School for the Deaf. Back then, people often referred to it as the school for the “deaf and dumb.’’ Yes, that was the insensitive way in which people used to talk. I remember my brother telling me, “I may be deaf, but I am not dumb.’’

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I think of parents such as Elizabeth Boggs of Cleveland, OH, who founded advocacy groups that pushed local school districts, states, and the entire country to recognize the injustice of wasting the potential of young people with disabilities. I think of the Fialkowski family of Philadelphia, PA, and other families who joined together to petition states to include their children in public schools.

In 1972, a critical court case, PARC vs. the Commonwealth of Pennsylvania, concluded that denying children with disabilities equal access to public education was a violation of the 14th amendment guaranteeing equal protection under the law. The right of children with disabilities to an equal education is not a federal mandate concocted by Congress out of the blue and imposed on states. It is a constitutional mandate.

Thirty five years ago, states pleaded they lacked the financial resources necessary to implement the courts’ decisions in PARC and many similar cases. As a result, Congress stepped in and passed IDEA as a method of offering financial assistance to states in the fulfillment of their obligations under the Constitution, and to ensure that such principles as child find, zero reject, parent participation, and due process were integral parts of educating students with disabilities.

The “zero reject” requirement was an extremely important component of this effort. IDEA insisted that all children, no matter what their disabilities, had rights to an education. And not second-rate, segregated education. The law demanded children be provided free, appropriate, and public education that would occur in the least restrictive environment possible.

We knew at the time of IDEA’s implementation that education should be tailored to the individual student.

And we knew it is important for children to be in the school of their community, the school their siblings, friends and neighbors also attend. So we made sure

those principles were reflected in the law.

Today, though we celebrate 35 years of progress under IDEA, our work is by no means complete. In the years ahead, we must redouble our focus on high expectations for students with disabilities. We must ensure that the post-high school reality for students with disabilities includes opportunities for higher education.

Additionally, our focus on students with disabilities cannot end when they complete school. We must also build pathways into the workforce—real opportunities for competitive, integrated employment, with decent wages and benefits—for all young people with disabilities.

This effort is absolutely critical to helping our citizens with disabilities realize the four great goals of the

Americans with Disabilities Act: equal opportunity, full participation, independent living, and economic selfsufficiency.

Sincerely,

Senator Tom Harkin Senator Tom Harkin (D-IA) is Chairman of the Senate Health, Education, Labor and Pensions Committee harkin.senate.gov

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id you all have a great holiday? It’s still pretty hot down here in Florida. I get to wear shorts and no coats, so that’s been pretty nice. Even when I’m enjoying time off from racing there’s plenty going on!

A couple of weeks ago, a crew from CBS’s Courage in Sports filmed my family and me for a television special.

It was pretty fun! After a day of riding and interviewing, I went to a studio in Jacksonville, FL, for the video shoot. When I walked in, I was surprised to find TVs stacked up everywhere! They all had fuzzy lines on their screens and my mom told me she heard “static”!

The director of the special said he wanted to create “white noise” because I am deaf. It was a pretty creative approach, and I had a great time filming.

Last year during my break from racing, I visited a Belgian family I’d become friends with while racing in Europe. This year they wanted to come to visit me and to see Florida for the first time! My family and I were pretty excited to have them come visit us, but we weren’t sure what they wanted to see or do. The food in Belgium is a little different from ours, so we didn’t know what they would like! But I did know that they love chocolate and mayonnaise, so we just stocked up on those!

They don’t really celebrate Halloween over in Belgium, so my friends were excited to trick-or-treat with me and my little brother. My mom and dad walked around my neighborhood with all of us. The girls and I dressed up like nerds and my little brother dressed as Indiana Jones.

My friends were really excited to learn we got to go from house to house and get free candy! They thought the whole thing was crazy, but it was a lot of fun for them, and for me too!

My family also took them to DisneyWorld. My friends wore me down because they wanted to see and do everything and made me their official tour guide! It was very warm while they were visiting, so we hung out at the ocean and rode around my track on all of my pit bikes and four-wheelers. I really enjoyed myself when I went to visit Belgium last year, and I hope my friends had a fun time with me and my family!

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Each year, during the week of Thanksgiving, The Winter Olympics (or Mini Olympics) are held in Gainesville, FL. This is a huge amateur national motocross event. I can’t race in it anymore, because I am a professional, but for many years my family and I camped nearby in a motor home with all of my racing friends.

A lot of people attend this event, and races continue from Monday until the following Saturday. Awards are given out and, at night, there are games to play and the crowning of Ms. Winter Olympics! Everyone has a great time. Even though I can’t compete anymore, I usually go just to hang out with friends because the event is only about an hour and a half from my house!

This year Red Bull sponsored a “girls ride” day at the Winter Olympics. Red Bull asked me and Tarah Geiger (like me, a WMX Red Bull rider) if we wanted to help out with the event. I was really excited by the opportunity because I had never done anything like it before. It was so much fun! Over 50 girls signed up, and I think I rode for three hours straight! Tarah and I just got to ride and hang out with all of the girls—it was definitely something I would do again. I hope it becomes become an annual thing!

Now I’m headed out to Colorado to do a photo shoot with my sponsor, Able Planet. After that, I’ll be home for a couple of days and then will go into surgery so doctors can remove the plate placed in my collar bone after last year’s crash. Surgery is not exactly the way I wanted to spend my holidays, but maybe it will give me a chance to slow down a little and enjoy the season! ashleyfiolek.com

Left Shauni-Chip-Me-Gritt and Kicker (my little brother is in front!)

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s acupuncture an art? A science? A religion? Hey, as long as it works, who cares? Whatever it is, acupuncture has been used to treat a variety of ailments for about 2,000 years. Though it doesn’t stop cancer cells from dividing or make transected nerves in an injured spinal cord regenerate, acupuncture has been proven to alleviate the symptoms commonly associated with these conditions. For many people, however, the process remains shrouded in mystique. So let’s take a closer look at how it all works.

Acupuncture is the application of small needles, pressure, stroking, or electrical stimulation at distinct locations on the body, generally for the alleviation of pain. Some theories hold that the general effects of acupuncture activate nerve signals to the brain that in turn release substances like hormones or endorphins to affect areas elsewhere in the body. Endorphins act as the body’s natural morphine—they can reduce pain or even elevate mood.

Acupuncture may also lead to the release of anti-inflammatory substances, resulting in relief for symptoms of such inflammatory diseases as arthritis and asthma.

Though acupuncture is still not precisely understood by modern medicine, it is not irrational to believe that this sort of treatment can be beneficial to a patient.

Changes in brain activity have been reported on the positron emission tomography (PET) scans of patients

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receiving acupuncture, although scientific studies to prove the effectiveness of acupuncture are difficult to perform because no effective placebo is available, and because there is no way to “double-blind” the subjects or examiners.

Acupuncture is known to affect different locations on the body in various ways. The complexity of acupuncture treatment stems from the variety of effects that can be achieved by accessing different combinations of pressure points on the body. Acupuncture needles, typically made of stainless steel, are much smaller than the needles Western doctors and nurses use for administering injections. To make the needles more easily handled by an acupuncturist, the upper segment of an acupuncture needle is wound in bronze wire or is covered in plastic. Since acupuncture needles penetrate the skin and are not disposable after use, they must be sterilized in the same manner as surgical instruments.

The concept of acupuncture centers around the flow of “energy” (called Qi) through the human body. The movement of the Qi is defined by twelve channels that are comprised of internal and external pathways. The external pathway, existing on the surface of the body, is what is often depicted on an acupuncture chart. Qi channels are described as coursing in the body and are associated with different organs. Treatment of some symptoms

relates directly to the organ typically associated with that symptom (i.e., acupuncture pressure on the stomach may be applied to treat indigestion), however, other symptoms may be associated with one or a combination of organs that aren’t commonly linked with such symptoms in Western medicine. For example, pressure on a combination of acupuncture points near abdominal organs like the liver and pancreas may result in elevation of mood in a person with depression.

Acupuncture points are located along several layers of pathways throughout the body, specifically along twelve primary channels called mai. These twelve channels correspond to the major organs: Lung, Large Intestine, Stomach, Spleen, Heart, Small Intestine, Bladder, Kidney, Pericardium (the tissue sack around the heart), San Jaio (an intangible, also known as “the triple burner”), Gall Bladder, and Liver. These organ systems are capitalized to distinguish them from the actual organs and to allude to the flow of energy between organ pathways.

Additional pathways include the Eight Extraordinary Pathways (Qi Jing Ba Mai), the Luo Vessels, the Divergents and the Sinew Channels. Ashi, or “tender” points, are generally used for treatment of localized pain.

In traditional Chinese medicine, health is a condition of balance within the body of the “yin” and “the yang”.

Particularly important in acupuncture is the free flow of Qi. Qi, which forms the yang, is the body’s “vital energy” and, as such, is intangible. The tangible counterpart of the yang is Blood, which is referred to as the yin.

Acupuncture treatment regulates the flow of Qi and Blood, enhancing where there is deficiency, “draining” where there is excess, and promoting free flow where there is stagnation.

Although acupuncture points are spread over the surface of the body, a large number of these points can be found along the spine. Additionally, an entire subset of acupuncture focuses on points in and around the ear. You might notice that the outer perimeter of your ear forms a spiral—in acupuncture, this is referred to as the “helix”.

If you study a friend’s ear closely, you will see another spiral curve in the opposite direction. This is referred to as the “anti-helix”. An entire set of stimulation points over the front and back of the outer ear serves as an important part of acupuncture treatment for many ailments. Some acupuncturists focus on these areas, others combine them with the major body pathways.

In 2003, a team of doctors directed by Alice M.K. Wong, M.D., treated a group of patients who were recovering from spinal cord injuries. The doctors incorporated acupuncture in the treatment regimens, as well as standard Western modalities such as physical therapy. The team of doctors used mild electrical stimulation at several key acupuncture points, including the bilateral Hou Hsi (SI3), Shen Mo (B62), the antihelix, helix, and the lower portion of the ear-back areas. These points are significant because they are all found on Qi pathways related to the spine.

Neurological functions, including sensory and motor skills, improved greatly in patients whose treatments included acupuncture. Researchers concluded that the use of acupuncture, when combined with massage and physical therapy, can be beneficial soon after spinal cord injury.

Though acupuncture cannot make paralyzed people walk again, patients whose spinal cord injuries are not complete may find that acupuncture treatment leads to improvement in their daily functions. In some studies, patients with incomplete spinal cord injury found that sensation improved as a result of acupuncture treatment. Improved sensation in a mostly immobilized individual can reduce bed sores (called “decubitus ulcers”) that may lead to infection and possibly end the life of a spinal cord injury victim. In other studies, spinal cord injury patients experienced improvement in bladder control after acupuncture treatment at sites near the tailbone, not far from where the nerves to the bladder exit the spinal column.

Although it can occasionally result in small amounts of bleeding and bruises, acupuncture has minimal risks as a mode of treatment. Moreover, it is fairly inexpensive, which is particularly good since few insurance companies cover the procedure. I often tell my patients that, since acupuncture is not risky and is not costly, there is little to be lost by exploring it as a treatment possibility.

When I speak with a patient about undergoing major surgery on his spine, I make every effort to help him to feel better without surgery, so acupuncture often registers as a viable option. At least two major studies in Western medical literature suggest that more than half of patients with back pain experience significant benefit after acupuncture treatment.

You need not “go East” to receive acupuncture treatment.

Many Western clinics now offer various elements of traditional Chinese medicine, including acupuncture. In most metropolitan areas in the United States, acupuncturists practice their skills in small offices throughout their communities. Acupuncturists are trained practicioners and must be licensed in most states. When looking for the acupuncturist who best suits you, use due diligence, just as you would in the search for any physician. And, just as you might during any visit to a doctor, remember that not every treatment will be effective. Don’t give up after one or two unsatisfactory experiences with acupuncture.

For most of us, science is comforting, particularly in respect to the treatment of our diseases. However, much of Western medicine remains a delicate balance between art and science. While acupuncture is considered by many to be an ancient medical art, it is well established, is not totally inconsistent with scientific principles, and is not risky or expensive. For those who suffer from pain or discomfort, it is a viable, practical option that is often well worth consideration.

by Thomas Chappell, MD thomaschappellmd.com medicalacupuncture.org ABILITY 11

Carl McIntyre, star of Aphasia: The Movie, rests with son Sawyer.

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arl McIntyre can’t throw a baseball very well with his left hand, but his six-year-old son, Sawyer, doesn’t really care. He just knows Dad is playing ball with him.

To Sawyer, Dad has always been the way he is today.

Sawyer doesn’t remember what happened to his father on September 15, 2005, but it’s a day that Carl will never forget, because it changed his life forever.

Five years ago, Carl was at home with his children— Sawyer, then only 18 months old, and Liza—when he felt his arm and leg grow numb. Angry that he was losing control of his body, and unsure how to recover it, Carl ended up on the floor, trying desperately to crawl to a phone to get help. His children thought Dad, an actor, was just playing.

When Carl’s wife, Elizabeth, and daughter Grace came home, they made a similar assumption: this is just a game. Grace stepped over her dad and continued into the house, and Elizabeth expressed frustration that Carl had not yet put Sawyer to bed. She picked up the phone and threatened to call 911 unless Carl stopped his antics.

She dialed “9”, then “1”, then suddenly realized none of this was make-believe.

At 46 years old, Carl had suffered a massive carotid embolic stroke that left him with Broca’s aphasia: difficulty communicating due to damage to the frontal lobe of the brain. Aphasia affects about one million Americans (or about 1 in 250 people) and is more common than Parkinson’s, cerebral palsy, or muscular dystrophy.

Some people with aphasia are hesitant to speak because they are embarrassed by their inability to say what they mean. Progress often depends on the determination of the patient to communicate. Fortunately

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for the McIntyre family, Carl wasn’t about to give up without a fight.

Before his stroke, Carl had been a very successful actor and salesman, living a happy life with his family in Charlotte, NC. His family remembers he always had a gift for communication.“Everything Carl did involved speech,” Elizabeth said. “Whether he was acting or working sales or doing commercials, his whole life was his voice.”

Carl appeared in movies, on television, and was a featured voiceover artist in commercials. His career saw him take on a wide range of challenging characters, from hard-nosed attorney to family man to jokester. The Closest Thing to Heaven, a 1996 film set in Charlotte, features Carl as Lester, part of an ensemble of Southern characters whose interwoven lives are depicted during the course of a single day.

In a commercial for plasma products, Carl is the likable, sincere guy who makes a viewer listen even if he doesn’t think he’s interested. Today Carl jokes he had a “silver tongue” when convincing people to make a purchase. But immediately after the stroke, Carl’s tongue was no longer his friend. The likable actor and family man was paralyzed on his right side, finding himself unable to speak, read, or write. He even had difficulty understanding others. Carl McIntyre was trapped in his own head.

Through years of extensive speech and physical rehabilitation, Carl fought back to star on the screen once again.

Spurred by the generosity of some of Carl’s friends, the short film Aphasia: The Movie was shot in Charlotte and premiered in May 2010. Since that time the film has been selected for five international film festivals and won an award at the Big Bear Lake Film Festival.

McIntyre struggles for help in a powerful scene from Aphasia: The Movie.

Jim Gloster, one of Carl’s best friends and director of Aphasia: The Movie, was at Carl’s side after his sudden medical scare. The effects of the stroke on Carl motivated Gloster to write a role that would allow his friend to return to the craft he loved. Aphasia, shot in only eight days, was produced by a group of Carl’s friends from his years in the film industry and from his career teaching and acting with The Charlotte Shakespeare Company.

A wide array of producers, editors, art directors, grips, and musicians put in long hours (and gave up several days at their nine-to-five jobs) to help Aphasia: The Movie become a reality. Gloster believes the success of the project is due in large measure to Carl’s innate likability. “Most of our budget went to feeding the crew,” Gloster said, “because so many people jumped on board to help out Carl.”

Aphasia: The Movie tracks Carl’s frustration, anger, and determination to get his “voice” back. As a result, the viewer becomes intimately familiar with the challenges of aphasia. People with aphasia commonly struggle with an inability to translate what is in their mind into what is spoken aloud. Words and speech must be relearned, as if the person is returning to kindergarten.

As documented in the film, Elizabeth finds herself tasked with teaching her husband basic words: “tree,” “nose,” “salt”, “yes” and “no.” Roles are suddenly reversed in the McIntyre family: Carl is unable to say words that his three-year-old already knows. In one of the film’s most touching scenes, young daughter Liza sits on her dad’s lap, holding his face while trying to move his mouth to help him say her name. When Carl finally utters “Li---za”, his daughter says, “Good, Daddy! Good!”

University of North Carolina at Chapel Hill, serves as a group facilitator for a weekly aphasia discussion group Carl attends in the film. She notes that aphasia affects everyone in different ways: some people find they can still write, others use hand gestures or drawing to communicate. Many rely on spoken key words.

Throughout the film, Carl struggles with long words, sentences, and verbs. He prompts himself by saying “AB” quietly, and then “C-D” loudly when trying to describe discs that carry music. The word “when” absolutely escapes him: it has no associated visual, no picture by which to give Carl a clue. In order to capture the notion of “when”, Carl rattles off a visual list: “Chicken, eggs, rooster, hen…When.” Today he still writes out some words and speaks in short phrases, but his speech is smoother, and less struggle is necessary in articulation of his thoughts.

Carl’s speech pathology sessions, featured in the film, include flash cards with words like “dog” and “flag.”

The “f-words” prove especially difficult for Carl, and a scene in which Carl tries to say a particular “f-word” is made humorous by his frustation. Throughout its running time, Aphasia: The Movie illustrates that a sense of humor is essential to the recovery process.

On three occasions during the course of a year, Carl attempts to order a “Frozee” from a drive-through window. After each attempt, he gives up, empty-handed (“Frozee” is one of those challenging“f-words). When Carl finally manages to get the word out, it’s a heartwarming victory, until the drive-through attendant asks, “What flavor? What size?” as drivers behind Carl honk their horns and complain. Aphasia: The Movie compellingly demonstrates the fact that everyday activities often present huge obstacles to people with aphasia.

Denise Caignon, a speech-language pathologist at the ABILITY 13

Starring as himself, Carl McIntyre confronts a variety of medical challenges in Aphasia: The Movie. The film—written and directed by McIntyre’s close friend, Jim Gloster—has been selected for five international film festivals.

For Carl, the experience of making the film necessitated he relive some of the worst moments of his life: his stroke and stages of rehabilitation. Carl even had to unlearn “yes” and “no” in order to recapture the experience of confusion. He had to talk the way he had talked prior to rehabilitation—he had to remember the long, frustrating struggles to articulate simple words. As production rolled forward, Gloster found himself amazed

by Carl’s ability to get back into the groove of acting, and by his aptitude for making finely tuned adjustments to scenes. In the film, when insisting Elizabeth allow him to drive to a party, Carl says only the words “I drive,” but he says them over and over, each time with a different nuance.

share jokes, and laugh together. Once happy as a stay-athome mom, Elizabeth found she had to go back to work as a teacher to help support the family. Since the film’s production, however, the McIntyres say they have found a new sense of purpose and have been able to enjoy a new phase in their lives.

Chuck Bloodsworth, the film’s director of photography, was alarmed by how greatly Carl’s speech improved as the project unfolded. “I guess working ten hours a day is good practice,” Bloodsworth quipped.

Recently, during a presentation in South Carolina, Carl noticed his microphone wasn’t working correctly, so he simply took it off. “Theater is the best theater,” he said to his audience, as he launched into a presentation filled with keen observations, expressive gestures and humorous asides. “Stroke sucks,” he said. “Aphasia...really, really sucks. Some words…I know I know, but…I don’t know. I never quit. Never quit. Every day hard. But I win…every day.”

Some medical evidence suggests that certain areas of the brain can in fact improve after stroke. In a soon-to-bepublished article in the Journal of Neuroscience, Dr. Julius Fridriksson, Associate Professor at the University of South Carolina, offers data to suggest that spurring changes in the brain tissue of stroke patients can improve blood flow and increase activity in areas surrounding the damage. Fridriksson’s study challenges the common assumption that potential for progress ends after eighteen months of care. As Carl expresses in Aphasia: The Movie, “Hope’s gotta live longer than a year and a half.”

Carl dubs his wife Elizabeth, to whom the film is dedicated, his “angel” during the trials of his recovery. Elizabeth notes the experience of Carl’s illness felt like losing her best friend: they could no longer watch television, 14

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Today Carl is a spokesman for aphasia and has made a career of promoting his film and giving motivational presentations. He plans to teach acting again and maybe even perform a one-man show. When asked how he feels about all the attention and travel opportunities that have been thrust on him since the making of Aphasia, Carl says he’s “walking on air.”

At a recent showing of Aphasia, Carl’s son Sawyer sat in rapt attention, watching his father’s story unfold and seeing himself on the big screen. One wonders if this film will serve as Sawyer’s lasting memory of his father’s stroke. When asked what his children think about Aphasia: The Movie, Carl smiles, points to himself, opens his arms wide, and says “Star!”

by Anne Wood Humphries aphasiathemovie.com

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ove Simple is not an easy ride. An independent, low-budget film—produced in three short weeks and written and directed by Mark Von Sternberg— it portrays the difficulties of a romantic relationship based entirely on deception.

The film’s protagonist, Seta (Patrizia Hernandez), suffers from lupus, an auto-immune disease that typically manifests as a skin rash across the cheeks and nose. Her past lovers have been none too thrilled about her affliction, so when Seta starts to flirt with the idea of involvement with Adam (Francisco Solorzano), she decides she won’t let him in on her little secret.

As the movie progresses, and as Seta’s lies become more and more complicated, we learn she’s not the only one hiding the truth. Adam has secrets, too, and the characters’ mutual deceptions cause their lives and relationship to fall apart. Ultimately rendered strangers to one another, they face the choice between moving on or starting from scratch.

As Seta, Hernandez gives a stunning performance.

Though the character has lupus, she is not defined by the disease and remains, first and foremost, a person.

She is passionate, real, and sometimes angry.

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“When I first read the script, I liked her,” Hernandez said of her complex character. “She’s smart and funny and vulnerable. Even though Seta and I are, superficially, very different, I knew it wouldn’t be too much of a stretch to play her. Deep down she and I are much more similar than not.”

While researching her role, Hernandez was surprised to find that lupus is more common than she’d known, and that most people affected by the disease are women.

Being of Puerto Rican descent, Hernandez became curious about the ways in which the disease spans culture.

“It’s a pretty big disease in the Latin community, which I didn’t know,” Hernandez said. “The reading I’d done said that lupus breaks along ethnic lines and that Latinos are hugely affected.” Hernandez hopes Love Simple helps bring the disease and its effects to greater public attention.

The film has already made a notable impact on the lupus community. Post-production producer John Casey helped arrange for the film’s iTunes launch in the US and Canada to donate a percentage of proceeds to S.L.E. Lupus Foundation. Before long, Love Simple was requested in China, Australia, and England—countries that iTunes does not reach. Casey and Sternberg signed with Synergetic, an international film distributor, to

expand the reach of the project. Ten percent of proceeds from Synergetic distribution of the film go to the Lupus Research Institute in New York City.

“We’ve had a tremendous response,” said Casey. “This month, Lupus Magazine created a special Love Simple edition. The reaction to this film has been overwhelming and very meaningful.” In a newly launched Spanish version of Lupus Magazine, Hernandez was interviewed about her career and the film.

with the lupus community. “I had done my research, and I had spoken to doctors, but you still never know,” Sternberg said. “This is a serious illness, and I wanted to make sure we got the details right: the symptoms, the characterization, and an avoidance of any kind of self-pity in the character.”

Though Love Simple is billed as a romantic comedy, its writer-director says he always intended for the project to have a bit of an edge. “I wanted this film to bring visibility to a disease,” Sternberg said. “My own experience with lupus was as someone who, like the majority of Americans, really knew nothing about it.” That all changed, said Sternberg, when he began working as a nursing administrator in the Methodist Hospital of Brooklyn.

While there, he overheard a floor report of a patient who had died of lupus. Fresh out of graduate school, Sternberg began to research the illness and discovered lupus to be a mysterious disease with a multitude of symptoms—some of which manifest with frightening discretion.

But when it came to winning the acceptance of a wider audience, Sternberg had no trepidation. Though Love Simple was his first feature film, Sternberg’s career had been a long and diverse one, often involving writing and producing small shows in New York City. Sternberg says his specialty is happy endings that aren’t sappy endings. No saccharine chick-flick gems are on his resume. Instead, the writer-director gravitates toward independent films that are genuine, gritty and positive.

Because he had no intimate relationship with the disease, Sternberg was initially nervous about sharing the film

The DVD release of Love Simple is being distributed by Amazon, Barnes & Noble, Target, Walmart and Synergetic, and can soon be found on Netflix. For a little film, it’s really getting around.

by Molly Mackin lovesimplethemovie.com

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ew York’s Adirondack Park is a six-million acre wonderland for those who love the outdoors. The largest wilderness area east of the Mississippi River, it attracts hikers and bikers, as well as folks who fish, bird, golf and gallop. But if you’re blind or deaf or use a wheelchair, you may have a tough time getting in on the fun. That’s what prompted Joel N. Schadt to create hiking trails that cater to all levels of ability.

“I’ve worked with people who are developmentally disabled all my life,” says Schadt, a 21 year-old student at Paul Smith’s College in Franklyn County, NY. “It’s what I want to do with the rest of my life.”

Schadt was inspired by his brother, Matt, 25, who has cerebral palsy and cognitive disabilities that his family attributes to a bad batch of vaccine during Matt’s infancy.

“Matt’s always in the back of my mind,” Schadt said. “I want to be able to hire my brother and everybody else like him who is stuck working at a fast food place. If Matt doesn’t work, he doesn’t get Medicaid, so it’s a vicious circle.”

When Schadt was charged with completing a 400-hour externship as a condition of his May 2011 graduation, he homed in on a project that would provide three hiking trails that Matt, and anybody else, could use.

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Schadt had a tough road to plow: dead trees, falling fences and swampy pathways made the 15-year-old south Franklyn County trail system resistant to overhaul. So Schadt, a Recreation and Adventure Travel Ecotourism student, enlisted help from the staff and participants at the adjacent North Star day treatment program, whom he had intended to use the trails in the first place. Clients of North Star—who may be deaf, non ambulatory, mentally ill, have low or no sight, or face behavioral challenges— were all recruited as volunteers on the project.

Schadt began by talking to the North Star team members about what kinds of things they wanted and needed in a trail. With this information he created Red, Green and Blue accessibility levels. Of the three categories, Blue is most accessible, allowing navigation by wheelchair.

Along the Green path, Schadt derooted and destumped trees to make the way smooth. He put wood chips down to absorb soppy moisture. The Green trail spoke to the needs of those who have challenges lifting their feet, or who experience difficulties with hand-eye coordination and balance.

Red—the most challenging of all—left roots and stumps intact and dipped up and down hills, giving hikers what Schadt called “a taste of a typical Adirondack trail.”

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Between a hardwood bench, and a soft-wood sign, Joel N. Schadt, his brother, Matt, and his mother, Peg, enjoy the three-tiered trail system that Joel created as a part of his externship at Paul Smith's College in New York's Adirondack region. Come on in people of all abilities, the hiking's just fine. (Sister Kim took the pictures)

Though Schadt completed three trails over a span of five or six acres, the cost of his project was minimal, thanks to donations that included 18 tons of crushed stone, a gas-powered tamper to set the stone into place, lumber for fences and benches, and two trailers full of wood chips. Schadt recycled or reused everything he could. Some tools that were broken during the project were even used to make railings.

“For anything I couldn’t do or didn’t know how to do,” Schadt said, “I got people to help.” A friend of Schadt’s, well-versed in ecology, taught him that hard woods (such as cedar, maple, and birch) are best for construction of benches and fencing because they would last longer—or because, as Schadt put it, “we’d get more bang for the buck.” Soft woods were used to line the side of the trails and to make posts for the signs. A horticulturist also donated his services to teach the project’s participants about forest cycles.

A stickler for details, Schadt made every effort to build sensory components into each of the trails. Interpretive signs along the routes allow hikers to identify animals, herbs and plants as they move forward. Visitors to the trails can break into teams, competing to determine which group can pick out the most specimens. The trails also provide ideal posts for watching or listening to birds.

Just outside the North Star center, Schadt and his volunteer crew built a twelve-foot-by-twelve-foot deck on which the staff can socialize. If tackling a challenging behavior issue, staff can take a client on a walk, allowing 20

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him or her to cool down and regain a level head. Picnic tables are available for lunch al fresco, and grounds are ideal for dog-walking. Schadt notes that during winter months, the area is wide and flat enough for snowshoeing or cross-country skiing.

“This was the best job I’ve ever had,” Schadt said. “I’m already looking into disability-related organizations I can work with when I graduate this May. I want to take people out on adventures, and expand their opportunities and experiences.”

The Joel N. Schadt Interpretative Trail took Joel N. Schadt about three months to complete. As summer ended, Schadt’s volunteers and donors joined North Star employees and community members at large for a celebratory ribbon-cutting in the woods, where everyone snacked on Kool-Aid and cookies as Schadt spoke a few words about his passion for the project.

Afterwards, Schadt’s guests checked the sign that greeted them at the entrance, selected a trail, and enjoyed some of the best the Adirondacks have to offer.

by Pamela K. Johnson Joel Schadt’s favorite websites: Developers of New Hampshire’s first accessible trail in mountain terrain. crotchedmountain.com Outdoor adventures for those who never thought such things were possible. wildernessinquiry.org

Colonel Jennifer Menetrez delivers the keynote address at Neuroprosthetics 2010, an international conference on artificial limb development. A medical doctor, Menetrez directs the US military’s most advanced rehabilitation facility for amputees.

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olonel Jennifer Menetrez sympathized with the man on the hospital bed. She knew his status: lower spinal cord injury. Lower leg amputation.

This man would never walk again.

At least, that was what he had been told by caretakers, shortly after a 7.0 earthquake had rocked Haiti and killed 220,000. The region’s limited resources would be directed elsewhere. Menetrez, however, believed in this man.

She knew he might someday walk, if only someone took the time to work with him.

A few beds down from the nameless man was a nameless woman: pregnant, paralyzed, and unable to speak. Outside her room sat a man-made wheelchair with a dirty, plastic lawn chair attached as seating.

This is the situation Haiti faced, and still faces.

Menetrez had been deployed to Haiti to lead the combined US military medical response. She had arrived on the USNS Comfort, an 894-foot floating hospital commanded by the US Navy. The ship saw 820 surgical cases during immediate Haiti relief efforts. The estimated total of amputees resulting from the Haitian earthquake is generally accepted at 4,000, but Menetrez says approximately 1,500 amputees were surgically treated after the earthquake, 37 of whom were on the USNS Comfort.

Whatever the true numbers of those afflicted, post-earthquake conditions in Haiti remain less than ideal. The already-low life expectancy of Haitians has been compounded by sanitation problems resulting from the earthquake and associated injuries. Amputees face the nearly impossible task of keeping their wounds sterile, although Haitians continue to take great pride in cleanliness and presentation.

Throughout Haiti, the emergence of tent cities (formally known as Internally Displaced Persons Camps) fostered additional health complications. Amputees struggled to use their prostheses while traversing rough terrain and, without the benefit of running water, trying to keep their skin clean and healthy.

For those people still facing rehabilitation, hope often seems slim. A primary rehabilitation center near Port-auPrince is only accessible via dirt stairs that run up one hillside and down another. Amputees gather near hospitals in the hopes of being treated. For those with prosthetic limbs, there is no time for, or inclination toward, therapy. Patients begin using their new legs from the moment they try them on.

“Life in Haiti is rehab,” Menetrez said. “This is the type of environment in which they try to live.”

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At the Neuroprosthetics 2010 conference fittings are described for a prosthetic to a soldier’s area of amputation.

Living in Haiti with a disability is often seen as a curse— a sign that a family did something worthy of punishment.

Voodoo is very much still alive in the small country, and people with disabilities have no rights and grim futures.

They aren’t offered jobs. They’re taunted in schools.

Structural adaptations are virtually non-existent.

On a global scale, these challenges are not uncommon.

“Haiti is a good example of what goes on in much of the rest of the world,” Menetrez said. “It’s really survival of the fittest. It’s a very hard life.”

And yet, some measure of hope remains. This November, Menetrez delivered the keynote speech at Neuroprosthetics 2010, an international conference on artificial limb development at Worchester Polytechnic Institute. She spoke of her experiences in Haiti, but also of her day job as director of the Center for the Intrepid at Brooke Army Medical Center (BAMC), a rehabilitation hospital for injured American veterans who have returned from Iraq and Afghanistan.

The achievements made at BAMC draw a sharp contrast with the struggles Menetrez witnessed in Haiti. As of October, BAMC has treated a total of 1,097 amputees, 20 percent of whom had upper-limb amputations. Another 20 percent had multiple amputations.

The Center for the Intrepid is a four-story, 65,000 square22

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foot facility built from donations from more than 600,000 people. It showcases an impressive team effort by a multitude of specialty departments including, but not limited to, physical medicine, physical therapy, occupational therapy, burn therapy, prosthetics, and case management.

Research and clinical departments at BAMC are housed within the same building, a rarity among many large hospitals, and provide a powerful bridge between design and practice. At BAMC, an amputee isn’t just fitted with a specific prosthesis—he’s fitted with one that may allow him to run a marathon upon completion of rehabilitation.

Veterans are led on full horseback riding excursions through the countryside, participate in sled hockey, and make full use of the Flowrider: a recreational water device that simulates wakeboarding and surfing.

As part of occupational rehabilitation, BAMC engages veterans in a firearm training simulator that re-establishes their comfort with weaponry. Additionally, an “Activities of Daily Living” apartment—which, by design, is not accessible—forces veterans to overcome daily hurdles they may face outside of BAMC. The rehabilitation center’s hottest ticket, however, is its driving simulator, which allows veterans to get back behind the wheel and become re-acclimated with motorized vehicles. But Menetrez notes that even this activity presents a range of challenges.

“Our patients were in a war,” Menetrez said.

“They were blown up.

So sometimes you get them in the driving simulator and find they actually swerve away from things on the side of the road or zoom under overpasses without even realizing that’s what they’re doing. Daily activities are really important aspects of rehab. It’s not just about regaining physical ability.”

That’s not to say, however, that physical rehabilitation gets short shrift at BAMC. Col. Menetrez participates in an interview at the Neuroprosthetics 2010 conference.

Through participation in the Gait Lab, which utilizes 26 cameras and eight force plates, veterans can traverse an uneven surface through which an instrumented treadmill allows them to improve ambulatory performance.

Within moments, a flat walkway can transform into a set of stairs at a 40degree incline, allowing researchers to collect important data on a patient ‘s progress and capability.

But for a number of veterans, social engagement might provide the most useful therapy of all. In the BAMC computer lab, injured veterans can reconnect with their units and swap experiences and memories. Menetrez says this aspect is vital for a patient’s psychological recovery.

“When our patients were injured overseas, they tend to feel a lot of guilt,” Menetrez said. “Many of them want to go back. Meanwhile, their units are worried about what happened to them. So it’s very important that everyone has the capability to reconnect. We even have to pay attention to the anniversary of the patient’s amputation. We often find that as he approaches that date, something doesn’t seem right in his behavior. It’s not even a conscious thing.

But it’s something that needs to be taken into consideration.”

Despite the success of BAMC therapies and technologies, Menetrez is quick to warn that the challenge of recovery ultimately falls on the medical provider. Even amidst its slew of fancy machines, facilities and state-of-theart prosthetics, the key to the success of BAMC remains its ability to place focus on the patient. And thousands of miles away, in the unsanitary environment of Haiti—its rigged equipment, dirty hospitals, and overcrowded wards—the same truth holds. If a patient isn’t being helped, the equipment means nothing.

“Can that upper-extremity prosthesis help wipe a butt?” Menetrez asked.

“Can it help perform transfers if you’re someone who has lost both arms and maybe your legs? What does it do to improve someone’s function? That’s the bottom line. We can never lose sight of the patient.”

by Josh Pate sammc.amedd.army.mil ABILITY 23

Born with congenital visual impairment, musician Lachi brings sweet sounds to the masses. Lachi’s band, which shares her name, is made up entirely of musician’s with vision-related disabilities.

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elissa Ulachi Ulanma Offoha might be a mouthful of a name, but under the stage persona Lachi, this talented musician has no trouble making herself remembered. For two years, Lachi has been touring the East Coast and lighting up venues like The Knitting Factory, Ella Lounge, and New York University, where she received her Master’s degree in music technology. Lachi spoke via telephone with ABILITY’s Molly Mackin about her musical influences, band chemistry, and personal challenges.

Molly Mackin: How long have you been performing?

Lachi: Oh, I’ve been doing music forever. I started playing the piano somewhere between the ages of four or five. I got my first keyboard at, like, eight. Ever since then I’ve just been writing songs. (laughs) I have a million songs.

Mackin: Who were some of your musical influences?

Lachi: I listened to a lot of The Beatles and Radiohead while I was growing up, as well as to Bjork, and a lot of the alternative, avant-garde rock. Lauryn Hill, Fiona Apple, Yanni, Mozart. All kinds of music.

and right now we’re busy recording our next album. We were doing a bunch of shows in the northeast while Lachi circulated. We hit up Boston, we hit up Jersey, we hit up New York and Philly. It was kind of a crazy tour.

Mackin: What kinds of venues does Lachi usually play?

Lachi: Well, we generally hit up two different types.

Our band is able to play hard rock—I’ll call it acoustic rock—but we can also play an acoustic folk setting in which we’re not all plugged in. We do those folk settings a lot. We do a lot of acoustic shows at smaller venues that tend to be pretty packed, but we play rock venues as well.

Mackin: When you say “unplugged”, you mean completely acoustic? I assume you have a drummer?

Lachi: Yes. We have a drummer that plays with a full kit when we play our full setup. But when we play acoustic, sometimes he’ll play a thing called the cajon. It’s a hollowed-out box. He sits on top of it and plays the box beneath him. It sounds really cool.

Mackin: Are all of the songs you perform original works?

Mackin: Tell me a little about your most recent project.

Lachi: We released an album called Lachi on July 22nd, 24

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Lachi: Every once in a while we’ll throw in a cover, but generally we play original songs, yeah. We’ll do some

female-fronted rock covers: Imogen Heap, No Doubt.

But we do some Beatles covers, too. Everyone in my band is into The Beatles. But we’re also pretty into Zeppelin, Guns n’ Roses, Lynyrd Skynard. I personally listen to a lot of weird piano chicks. I don’t know if you’ve heard of the Dresden Dolls? We have a big array of influences, I guess.

Mackin: How many band members are in Lachi?

Lachi: Including me, there are four of us. I do piano and vocals, and the guys are drums, bass, and guitar. And everyone sings backup vocals.

Mackin: And there’s good chemistry between all of you?

Lachi: We’re like best friends. We hang out at each others’ houses, and we get up in each others’ faces all the time. The three guys all met when they were younger, and I think they tried to put a band together, but it kind of fell apart. Then they all went and each did his own thing. I came in and got them all back together. So it’s a tight dynamic.

Mackin: How did you get involved with your management group, Inherent Artists?

Lachi: Basically they had put a bunch of ads out, looking for female artists. I had just gotten out of a management contract, and I wanted to do my own thing. I thought managers were just out for my money, you know? But then I saw the ad from Inherent and we hooked up, and I’m glad we did. The funny thing, though, is that hundreds of women had responded to the ad, and apparently Inherent didn’t like any of them except for me. And by signing me, they ended up with three dudes as well. (laughs) So I’m the only chick on their roster, even though they wanted to only represent females. In the New York scene, it’s rare to find females who rock hard. A lot of booking agencies will put me in an all-female lineup, and I don’t fit because, first of all, my band is a bunch of dudes, and second of all, we’re doing alternative rock while a lot of other women here in New York tend to stick to singer-songwriter material.

Mackin: And everyone in your band is legally blind?

Lachi: Yeah. We all have different degrees of sight. One of the members is totally blind, and the rest of us have partial blindness.

Mackin: Were you born with your visual impairment?

bad. Another guy, I think his is congenital.

Mackin: Are you able to read Braille?

Lachi: I do understand Braille, but I can also read text, so obviously I usually just do that. If I’m in a situation in which there’s only Braille available—like, if we go to one of those blind conventions, then I’m fine. But I actually prefer text, just because everything is in text, most of the time.

I can’t really read Braille music very well because I can’t coordinate putting my hand on the paper and playing the notes at the same time. I don’t know how people do it. It leaves me with one hand to read and one hand to play a two-handed song, so it’s not going to work. (laughs) But I can read standard printed music because I studied music theory in college. I have to be very close to the page to be able to read it, though, so It slows me down so much that it’s almost ineffective. It’s easier for me just to learn by ear.

Mackin: What’s ahead for your band, in terms of touring and exposure?

Lachi: Right now we’re working with producers who have collaborated with Akon, Mary J. Blige—people who are out there and who have made some rounds. I think it would be interesting to take our weird style and mix it with some mainstream producers and see how acceptable the result becomes to the everyday listener.

We’re also planning a West Coast tour. Hopefully that will happen next year.

As soon as we get some demos out, we’re going to try to sign up with another label. I think we need something bigger. We’ve pretty much outgrown the place we’re at now, and I want to get our music into movies and commercials. Once you get placed, the checks just come in.

My long-term goal is to be able to live comfortably off of music alone. A couple of us in the band have day jobs, and we don’t want to have those any more. (laughs) Mackin: Do you have a day job?

Lachi: I do. It’s funny, because I’ll go into work and somebody will be like, “My friend just heard your song on the radio in California! That’s weird that we just sit next to each other and you annoy me.”

I’m like, “Thanks!” (laughs) So yeah. I’m hoping to quit this day job. ulachi.com

Lachi: Yes. It’s congenital. I’ve always had the same level of acuity, since the day I was born. My bandmate who is totally blind once had perfect vision and went blind when he was very young. Another bandmate was blind and then had a surgery, but his sight is still really ABILITY 25

Left: Playwright and poet Laura Hogikyan accepts the VSA’s Playwright Discovery Award.

Right: Stills from the production of Hogikyan’s play, The Marionette Effect.

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ome seventeen-year-olds draw inspiration from teen idols. Laura Hogikyan, a freshman at Harvard University and accomplished playwright, looks elsewhere.

“When I think about who inspires me, it really does come down to family, friends and teachers,” Hogikyan said. “Big-name figures are just too far away to really be inspirational.”

Hogikyan’s play, The Marionette Effect, recently won her the 2010 Playwright Discovery Award, an honor awarded by VSA, the international organization for arts and disability. Hogikyan’s original dramatic work tells the story of a young woman whose musical career is derailed after she experiences a stroke at the age of 15.

Although the play is not autobiographical, Hogikyan says that some of her protagonist’s challenges mirror her own. “I had an experience with a hand injury myself,” Hogikyan said. “Since I was a pianist, I drew on that to write the script. If all the world’s a stage, this play kind of turns that concept on its head: the stage is inside the protagonist’s mind.”

Liz Miller, director of performing arts for VSA, believes the Playwright Discovery Award—now entering its twenty-seventh year—stands as an important investment in

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young talent with social messages. “It’s an opportunity for middle and high school students to write a play that incorporates the topic of disability,” Miller said. “The program is really a way to get students thinking creatively about the idea of disability.”

Each fall, the VSA issues a call for scripts and mails publicity posters to thousands of schools across the country. The competition also accepts scripts from groups of students, provided that the students meet a set age criteria. This year, Hogikyan’s play emerged as one to be remembered.

“I thought Laura’s script was fantastic,” Miller said.

“It was a really mature piece, a really thoughtful piece, and the production tried to capture the poetry she incorporated into her work. There were a lot of imagery and metaphors written right into the script. It was a really lovely realization of all of those ideas.”

For her part, Hogikyan is quick to praise the experience she shared as a VSA honoree. “I can only say good things about VSA,” Hogikyan said. “The production was so much better than I’d imagined it on my own. The imagination of so many different people went into this, and the opportunity to meet people who are professionally involved in theater was really amazing. I got to be around people who are doing what they love to do.”

Each year, the VSA’s program culminates with a fullystaged production of the winning script at the Kennedy Center’s Family Theater. Designers, directors and actors are all hired for the production and undergo three weeks of rehearsal before the performance commences.

Miller says collaboration is key to the success of the enterprise. “What’s really neat about the Playwright Discovery Program is that it does provide a winning playwright an opportunity to revisit their script with the director,” Miller said. “This year we hired Janet Allard, a previous recipient of the Playwright Discovery Award, to work with Laura. Laura said that mentorship was one of the best aspects of the whole process: she got to revisit her script and improve it and think about it some more. When you’re in school, there isn’t much time for that revision process.”

Hogikyan found herself inspired by the experience, and more eager than ever to continue life as an artist. “It really makes you think about the power of the arts,” Hogikyan said. “This was a lot of work for everyone, getting the whole thing put together, and everyone went above and beyond. It was really, really amazing.”

Hogikyan is not entirely unfamiliar with the glow of accolades. She’s an accomplished playwright, producer, poet and teacher, and has won numerous national awards.

Last summer she participated in a poetry program at Iowa University’s acclaimed Writer’s Workshop.

Since the age of five, Hogikyan has also developed her skills as a pianist. Under the guidance of some of the top instructors in the nation, she’s studied at the Chautauqua Institution in New York, The Eastman School of Music, and at a number of other celebrated programs.

Somehow she still finds time to teach piano to others, despite a daunting Harvard courseload.

“Harvard is pretty supportive of students taking what they want to take,” Hogikyan said. “They tell you to never take a class if you don’t want to take it. Right now I’m in a seminar on Senecan tragedy, an intensive ancient Greek class, advanced playwriting, and a seminar on morality with Alan Dershowitz. You can kind of make your schedule what you want it to be. I love my classes here.”

And homesickness? Hogikyan doesn’t seem to have any interest in it. “We’re big kids now,” Hogikyan said. “We’re okay. There are so many opportunities here. So much you’re thinking about all the time, so much work and other things. There’s not a lot of time for anything else.”

by Stan Hoskins vsarts.org/x244.xml

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Multi-faceted artist Lana Gillaspie accepts an award during the National Veterans’ Creative Arts Festival.

L

ana Gillaspie doesn’t mind if you peek inside her journal. Sometimes her words are crystal clear and pop off the pages. Other times they’re a little smeary. You might be able to pick up a word here, an idea there, but the responsibility to complete the story often falls to the reader.

But Gillaspie’s deepest thoughts aren’t best deciphered from her personal book of memoirs—a hardbound tome filled with paper pages. Instead, Gillaspie would prefer you turn to her artwork.

Beginning from a kernel of an idea she might discover through journaling, Gillaspie spins her private meditations into beautiful works of art.“Sometimes there might be a word in my daily journaling,” Gillaspie said, “or a sentence that lets me create a story or a poem.”

With a group of approximately 120 military veterans, Gillaspie recently traveled to La Crosse, WI, for the National Veterans Creative Arts Festival, hosted by the United States Department of Veterans Affairs. The event marked the culmination of a year-long competition in art, music, drama, dance, and creative writing for veterans with disabilities. Solidifying her place as a Renaissance woman, Gillaspie, who has multiple sclerosis (MS), has won medals in dance, drama, group prose, group comedy, and solo poetry.

“I did a solo for a national event about being diagnosed with MS,” Gillaspie said. “I wrote about how it made me feel, and what I did afterward. I didn’t let MS run my life.”

Gillaspie, who estimates between 2,000 and 3,000 people

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were in attendance at the time of that solo poetry performance, admits she was trepidatious about baring her soul.

“I was really, really hesitant to perform that solo because it’s not for everybody’s ears,” Gillaspie said. “I was apprehensive to let everybody know that I was vulnerable and how much I hated MS. But I went ahead with it. My thinking was that the more people become aware of MS, the more they might help out and donate and find out even more about it.”

Established in 1989, The Creative Arts Festival provides an annual medium through which veterans like Gillaspie can share their voices or emotions. Liz Mackey, director of the festival believes such experiences can be powerful and healing.

“A lot of times you might be telling someone else’s story as well as your own,” Mackey said. “Maybe your story is similar to someone else’s circumstance but they couldn’t express it in the same way. We’re helping establish connection each time somebody sees why a veteran created a piece of artwork, each time someone hears the story behind a piece or performance. Someone might say, ‘I can relate to that. You just expressed what I’ve been feeling for so long.’”

Sometimes, however, the feelings expressed in and evoked by the veterans’ artwork are ones they’d rather forget.

“Some of our veterans have nightmares related to their traumatic experiences,” Mackey said. “One of our veterans literally uses art to face the demons he sees at night.

He’s able to paint or carve the faces. That was our Best in Show art piece this year. It was incredibly moving.”

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Though Gillaspie admits she hasn’t always been attracted to artistic expression, she recalls that it took only a weekend for her perspective to change. In 2005, when she was in the hospital receiving treatment for her MS, Gillaspie was given a bead kit by her recreational therapist. In no time at all, Gillaspie had completed the entire kit. She wanted more.

In her very first festival competition, Gillaspie nabbed the title of “Best in Show”, sparking a long string of successes at the Creative Arts Festival.

According to Mackey, Gillaspie’s discovery of, and immersion into, creative expression is far from unusual for veterans.“A lot of people don’t dabble in the arts until somebody introduces them to it,” Mackey said. “Some of our veterans with physical disabilities use the arts as a form of rehabilitation. Through the physical motor rehabilitation process of working on a craft kit in an occupational therapy clinic, or lacing a wallet, they’re producing something useful and functional.

Then, maybe, they’ll dabble in something else, like poster art or painting or drawing. They enjoy the process while they’re involved in the therapy.”

Gillaspie has won some of her strongest acclaim and notoriety for her skillful wheelchair dancing, complete with choreographed moves and turns. Her performances have often been awarded top prizes.

“You can still accomplish things no matter what your limitations are,” Gillaspie said. “A lot of people dance in wheelchairs, even with partners. It’s totally do-able.

Some people think they have limitations, but that’s what limits them. I look at it as, ‘I’m not disabled, I’m differently abled’.”

“People think I’m stepping with my feet,” Gillaspie said of her technique, “but I’m just using my wheels as my feet. In certain parts of the music, I’m twirling around or maybe going backwards or forwards, trying to get in rhythm with some music. It’s harder to choreograph dancing because of the wheelchair.”

Mackey believes the positive attitudes illustrated by people like Gillaspie are powerful and nourishing forces in communities that don’t have much exposure to, or experience with, people with disabilities.

Harder, but not impossible. As a wide array of artistic possibilities opens up before veterans with disabilities, often alleviating some of their medical concerns, many come to love the arts so much that a creative life continues well past completion of their therapy.

For veterans who, like Gillaspie, don’t regularly participate in adaptive sports, artistic expression is a crucial part of life and fulfillment after disability. “You’ve got to have some sort of outlet somewhere,” Gillaspie said. “I enjoy participating.”

Gillaspie notes that, outside of its creative and therapeutic benefits, involvement in the arts solidifies the importance of setting goals, meeting them, and then setting even higher goals.

“Our main goal for our program is to educate our community about the arts,” Mackey said. “It’s important people know how useful the arts are in the lives of veterans, whether they have physical-motor challenges or mental health issues. The arts are a big part of treatment, and are very effective treatment.”

Gillaspie’s decision to immerse herself in the arts has proven to be a powerful, lasting and cathartic one. It’s a decision she hopes might prompt others to follow similar paths as they decide how to confront their disability.

“Attitude is a choice,” Gillaspie said. “It’s totally up to the individual to decide, what attitude am I going to be in today? I didn’t sit around a lot before I got MS. I played sports and was involved in a lot of activities, so why wouldn’t I stay busy now?”

by Josh Pate www1.va.gov/opa/speceven/caf ABILITY 31

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wice a month I walk four easy minutes to my local tram stop, hop on the tram, and disembark fifteen minutes later at Ebertplatz. From there I walk just five minutes to join the other women of my writing group. My trip is usually so easy, I don’t even think about it. Last year, however, tram and subway service to this station—which happens to be one of the busiest of Cologne’s public transportation system—was unexpectedly disrupted.

As might be expected, this sudden change in my usual route prompted some personal adjustments. Each time I waited at the station, my lungs were now greeted by pungent clouds of dust. Bagfuls of concrete fragments had now been piled high, right next to the tracks. At 11 pm, transit workers blasted concrete at deafening decibels, each worker entertaining me with evening fireworks while welding pieces of train track.

Every week there seemed to be more boarded walkways, exposed wiring and blocked exits. And then, there was the unthinkable: my station was closed for the whole summer. I complained loudly to my family and friends about this unnecessary hindrance to my travels.

My friend Andrew is able to walk, but with such excruciating pain in his back that he needs to use a mobility scooter to get around. It wasn’t until he and his wife Bonnie visited me in Cologne that I became acutely aware of what was actually happening at my tram stop: Ebertplatz was the first of several stops that were being transformed into disability accessible stations and transfer points.

During Andrew’s visit I had the opportunity to discover first-hand what it means to get around a city as a person with a disability. Even as they were planning their trip from England, Andrew, Bonnie and I discussed the logistics of getting around Cologne. Andrew had recently purchased his mobility scooter (which looks a lot like a golf cart) and needed a vehicle large enough to contain it. This meant the couple had to buy a new car. Additionally, Andrew and Bonnie couldn’t fly to Germany because there was no way Andrew could get his scooter onto a plane. Nevertheless, Andrew wanted to use the scooter throughout Germany, to have some independence of movement on their trip. So he and his wife decided to drive here.

From the outset, we all knew Andrew would need periodically to charge his scooter’s battery during our travels. In order to do this, Bonnie and Andrew would need access to a power outlet. I live in a first-floor apartment so, upon my friends’ arrival, the three of us set about finding a way to run an extension cord from my place to Andrew’s car. We would also need an adaptor, however: English plugs are not the same as those in Germany.

Charging Andrew’s battery proved to be more of a challenge than I had anticipated. I had figured he could simply

park outside my building, near the laundry room, and I could then run an extension cord through the window.

But the parking spot near the laundry room was already allocated to someone else. At a loss, Andrew parked his car underneath our apartment, in an available parking spot, and we began improvising.

Implementing our operation reminded me of Rapunzel letting down her hair. First, an extension cord was fed down from my window (and clanked its way along my neighbor’s!). But sure enough, the cord was not the right length for our purposes. Up went the cord, and another extension cord was added to it. This worked!

But now the question arose: what would happen should it begin to rain? The cord retreated back up through the window. In pitch blackness, we searched through my outdoor balcony storage area and managed to find an all-weather extension cord. Finally we had a system that just might work, and Andrew’s scooter could be charged all night, even if it should rain.

The next morning we were all set to go exploring.

Andrew painfully walked up the twenty steps to street level, and we all climbed into his car, off to the Cologne Cathedral. We chatted amiably, Andrew behind the wheel, and anticipated finding disability parking underneath the cathedral. We searched for the familiar wheelchair sign—but our hopes were dashed. After circling around the parking lot a few times, we finally decided to settle for any spot we could get, thinking we had somehow missed the disability parking.

I found an attendant and asked him where we could find a disability parking spot. “There aren’t any,” was his curt answer.

“Do you have an elevator we can take to get out of here?”

“Nope. We don’t have one of those either.”

“Then how are we supposed to get out of here?” I asked.

The attendant’s nonchalant answer was that we could simply take the scooter out through the exit, where the cars leave the garage, and then find our way through the streets and sidewalks of Cologne.

Dejected, we rolled out of the garage, forcing the car behind us to wait, only to find ourselves in a huge construction zone that had no sidewalks. With no other options, we rolled on down a road and even onto gravel, which irritated Andrew’s scooter. Eventually, somehow, we were able to get onto a sidewalk. But how would we get to the cathedral, uphill from the parking garage?

Could we find our way without stairs?

Somehow we did! And although we had to take the long way around to get there, we finally made it into the cathedral, and could move around inside of it at liberty.

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As a resident of Cologne who enjoys showing my guests around, I was overjoyed that there was a way for a person with a disability to get into the cathedral, even if finding it had been a bit difficult.

Near the cathedral we found an outdoor café and parked Andrew’s scooter. He managed, with a few pained groans, to climb onto a chair and we enjoyed the afternoon sun and delicious Kölsch beers with our lunch. Our courage fortified, we continued our adventure, heading over to a two-story music store where Bonnie, a musician, browsed through sheet music.

Here Andrew’s run of good fortune came to an end: there was no way for him to get upstairs. Instead, he waited at ground level, where he entertained other shoppers with his jokes. I wondered if he found it funny that there was no way he could look at or buy sheet music if he needed it.

Continuing down the main shopping street, we decided to stop for ice cream cones. It was then that we noticed that Andrew’s was the only scooter amongst thousands of pedestrians. Where were all of the people with disabilities in Cologne? Did they not exist, or were they hiding somewhere?

On another venture into the city, we decided to try taking Andrew’s scooter onto the tram to hear a Saturday afternoon jazz concert. We all managed to get onto the tram with no mishaps, grinning at each other with relief.

We shared our space with bikes and baby strollers.

Someone on the tram assumed that we wanted to go to the zoo, the stop for which is along the same line as the one we were traveling. A stranger informed us, however, that a scooter can’t get off of the tram at the zoo.

Thankfully our station, Appelhofplatz, had a high, disability-friendly platform and an elevator!

Once at the concert, we took an elevator to the sidewalk outside, went into a city-center shopping mall, and got 34

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on another elevator that took us to the basement where the jazz concert was to take place. All went well. After the concert we went grocery shopping at a health food supermarket that, alarmingly, featured aisles wide enough to accommodate a scooter. Shopping in a department store proved to be no problem. This was getting fun!

Feeling inspired, we decided to take a tour of the Rhine.

We phoned the shipping line and were told we would have no problem taking Andrew’s scooter. What a delight (and a relief!) it was to watch Andrew’s scooter roll steadily up the gangplank, onto the boat, towards an onboard elevator that could take us right to the deck! I was so excited I bought us all cakes and tea.

The weather was glorious, warm and sunny. My pleasure at watching the scenery was intensified by the feeling of gratitude that this was all possible. Life does not diminish, I discovered, if you are in a wheelchair. My eyes were now open to the very real possibility of traveling the globe as a person with a disability.

Our return Rhine trip, however, proved slightly more difficult. The boat we boarded was an old, romantic steamer with no elevator. Though there was a makeshift lift on the stairs, it was too narrow to accommodate Andrew’s scooter. Nevertheless, we sat on the deck of the ship’s main level and were treated to a great view.

Having seen, first-hand, the needs of a traveler who has a disability, I now find myself looking for people in wheelchairs or scooters when on my own excursions. Though I rarely see such people in Germany, Cologne is steadily becoming better prepared for them when they do show up. This summer, in fact, the tram stop at the zoo was demolished and beautifully rebuilt. I look forward to the day when sidewalks, car parks and trams are packed with tourists and shoppers who ride in mobility scooters! I will happily put up with the congestion.

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hat time of year is more magical than the weeks that lead up to Christmas? And what more magical place exists than where Christmas traditions—like the Christmas tree—began? I’m speaking, of course, of Germany, where the streets are brilliantly lit up and the shops are beautifully decorated for Yuletide celebration.

If you find yourself in Germany this holiday season, here are a few ways you might celebrate or get yourself into the proper spirit: Meander through Hohe Strasse or Shildergasse—preferably in the morning, because in the afternoons and evenings these locations can be very crowded. Stop at the department store Kaufhof and look at the Steiff stuffed animal exhibit. Bring a child or two along, if you can, and watch their eyes light up. Go out for a cup of hot chocolate or coffee at one of the nearby cafés.

Visit a Christmas market. Cologne alone has six of these! I prefer the one at the square around the Dom because from there you can hear the breathtaking peal of the cathedral bells, every hour on the hour. The bells resound in full glory at 6 pm, but the market might be a little difficult to navigate with a wheelchair at that time.

This particular market is brimming with nostalgia, as well as with lots of tastefully handmade crafts. Some visitors prefer the market in the Old Town at the Altermarkt (near the Rhine) because it is smaller, has handcrafted gifts and also several attractions for children.

Whatever your preference, these Christmas markets are open from November 22 until December 23, from 11 am to 9 pm.

There is also a Christmas market on one of the Rhine boats: the MS Wappen, visible from along the Rhine Promenade. The deck area of this boat is wheelchair accessible and the admission fee is €2. The MS Wappen is open from November 25 until December 21, from 11 am to 9 pm on Mondays through Fridays, and from 11 am to 10 pm on Saturdays and Sundays.

If you love the feeling of being in an ancient city, the medieval market outside the Schokoladenmuseum (Chocolate Museum) at Rheinauhafen might be for you.

This attraction is mystical and entrancing, especially at night, and will transport you back to the Middle Ages— with an absence of electricity, but plenty of torchlight and stalls run by people in Medieval costume—though it may be too crowded for wheelchairs. The market costs €3 to enter, unless you are under one sword’s length in height!

Another fun, Medieval-style Christmas market can be found in the nearby town of Siegburg. This market is similar to the one near the Schokoladenmuseum but is much larger, with dozens of stalls and attractions, and has no admission fee. Parking is challenging here, however, so you might be best served visiting by train. The market is open from the last week of November until ABILITY 35

Andrew and Bonnie’s German vacation

just a day or so before Christmas Eve. Its hours are 11 am to 8 pm.

Go on a Nativity Scene tour. Known in Germany as Krippenwegs, these tours are especially popular just after Christmas. Some churches wait until Christmas to put out their nativity scenes. After the holidays, organized tours are made available for you to join.

Go on a Rhine cruise. The Goethe, a romantic paddlewheel ship, features a passenger lift but cannot carry wheelchairs to the upper decks. If you are able to board this ship, you can enjoy a brunch cruise. Another ship, the Traumschiff Ahoi (also called MS Rheinenergie) also features evening entertainment and is completely wheelchair accessible.

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During the weeks before Christmas you can also hear wonderful, inspiring concerts in the many Romanesque or other churches, in the Dom, and in the concert halls.

There’s nothing more thrilling than hearing a concert of music written by a German composer and performed in an authentically German setting. The Philharmonie arena holds several holiday concerts each year.

If you are coming to Cologne by car, ample disability parking is available along the streets. Disability parking in the parking ramps is somewhat more difficult to find, but there is designated disability parking in the Philharmonie Tiefgarage at Bischofsgartenstr.

by Noreen Nanz koelnerphilharmonie.de

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o how did an aspiring artist and photographer end up working nights surrounded by medical equipment and sick people?

I blame my father. He’s not here to defend himself anymore, but take my word for it: there was no way he was going to let any of his daughters become starving artists.

So now I’m a semi-starving nurse. When I started nursing, my salary was $8.65 an hour. And although I do earn a bit more these days, believe me, Bernie Madoff never solicited me for investment opportunities.

Ultimately I set aside my artistic dreams for a more “practical” reality of mastering the science and art of critical care nursing. Part of me was fascinated by some of the “big” questions in medical care, like, “What do you do when all of the body’s organs start failing? How do you help people who are truly suffering, without resorting to Jack Kevorkian measures?” Solving analytical problems in a humane fashion seemed (and still seems) far more rewarding than photographing magnificent images—although I still find tremendous pleasure in stealing away and capturing the world through a viewfinder.

Oddly enough, my professional journey through medicine intersected with a personal medical condition—one that would remain undiagnosed and untreated for five years. At first, doctors said that my facial tics (hemifacial spasms) and strange pains were due to stress or some hysterical “woman’s disease.” Yes, this was in the 21st century.

Finally I found help at Mount Sinai in New York City and walked out with a few names and treatments for a disease that affected my head but was not “in my head”.

I started my nursing career with dysphonia, cervical dystonia and even general dystonia (too bad they didn’t

give medals for ranks; I’d have been able to pin a few ribbons on my scrubs). Early treatments might have been much more fun if they had been given for cosmetic reasons, but my Botox, Myobloc and eventually Deep Brain Stimulation (DBS) treatments were prescribed to ease some less-than-glamorous symptoms.

How much trust would you put in a nurse who twitched and twisted? Not much, I’d imagine. So, at first, I worked while wearing a soft cervical collar that allowed me to perform sensory tricks to convince myself my body was aligned and not twitching and twisting.

After a while, however, that approach stopped working.

While I thought I was doing a terrific acting job (perhaps even worthy of a Tony or an Oscar), my patients began asking me “What’s wrong with you? Are you in pain?

Should I call a doctor? A nurse?” It was then that I knew the jig was up—at least in respect to sensory illusions.

So what was next for me? Retirement at age 30 was not an option, so I’ve figured out a way to continue doing what I love, despite my pain and my drugs and my brain surgery. Has it all been worth it? Yes. Am I an effective nurse? Ask my patients. Do I wish I could wake up and discover this has only been a long, bad dream? You bet.

How do I manage? I’ve got my own system figured out.

Most people don’t want to work nights and weekends. I do. Not because the work is easier or quieter or better paying, but because working those hours makes me that much more valuable in a hospital.

Are you wondering what it’s like to work from 7:00 at night to at least 7:30 in the morning? Let me take you with me through a typical shift.

First, if you’re scheduled to start your shift at seven, you have to be at the hospital well before then. And if you live in New York City and happen to have dystonia, like

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Illustration by Vuokko Keiski

I do, you should probably start even earlier. Find me a day without gridlock in this city and I’ll bet there’s either a national disaster or a holiday weekend.

Within the first half hour of our shift, we undergo the changing of the guard. During this time, the night team leader makes assignments and reports are exchanged.

And then the real fun begins.

A TYPICAL SHIFT: 1930 hours – I have two patients. One is on a ventilator and will likely be bleeding all night since a drug she has been taking for migraines (methotrexate) has eliminated not only her headaches but also her blood’s ability to clot. Her mouth is also filled with packing material. My other patient weighs about 300 pounds, has pneumonia, and is in the second stage of lung cancer. How in the world am I going to turn her over?

Despite my (very tall) height, I weigh slightly more than 100 pounds. I also have wires in my neck that connect a pacemaker to my brain. These wires are not industrial grade and can snap under pressure. But I’ll deal with that issue later. I have work to do.

1945 hours – I review the computerized order checklists to learn what medications are due to my patients at 10 pm.

1950 hours – A patient’s family member asks for coffee.

This would not be a big deal if not for the fact that walking with a steady, even gait is not my strong suit.

With a rather interesting weave (not ever to be confused with that of a runway model), I deliver hot coffee. No spills, no burns, and no “thank you”.

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2030 hours – I stop in to see patient #1. Her oral packing is bloody. The bed is bloody. It’s time to call the Ear, Nose and Throat (ENT) residents. The patient’s platelet count is only seven. Luckily, she is sedated (with IV Versed and IV Fentanyl) and her vital signs are holding steady.

2050 hours – I see patient #2 and hear gurgling. Since she’s not gargling, it doesn’t take a medical whiz to know that this is not a good sound. (Should you have a medical background, you might recognize the sound as a signal there is water in the patient’s lungs.) Since this patient has refrained from urinating for most of the day, I’m betting she’ll be much, much happier if I suction her. I do. I even hear a faint “Thank you.” I like this lady.

2100 hours – The ENT residents have ordered platelets for patient #1. Does that mean I’ll get them ASAP? No. It means I now have to call the blood bank and grovel.

“I need them in a hurry.” Their reply of “Yeah, yeah” can be translated as, “You’ll get them when I get to you on my list of things-to-do, people-to-see and dinner-toorder.” Am I happy? No. Is this stressful? Yes. Does this make my straight hair curl and my dystonia symptoms go away? Guess.

2130 hours – I have got to work on my begging and pleading skills, as they do not teach this stuff in nursing school. The platelets have yet to be delivered and no one has called from the blood bank to say, “Come and get them” (or, even more unlikely, “We’re on our way.”)

So I call them again. Were the platelets (a) delayed or (b) forgotten? My hunch is that the order is still sitting on the “to do” pile.

2200 hours – This is not good. My 300-pound patient needs to be turned over for a skin assessment. Science

can send men to the moon—why can’t it build me an extra arm for multitasking? I add two bags of antibiotics to the patient’s IV. As I do this, it occurs to me that, although I’ve been on duty for hours, I haven’t had a chance to enter anything about my patients into the computer. I’ll do that now.

Wait, no I won’t. Alarm bells go off. My other patient’s blood pressure is dropping (“falling through the floor” would be a more accurate description). This is when all my years of training and experience pay off. I react automatically.

2210 hours – I run into the drug room (if you’ve ever seen someone with dystonia run, you know it’s not likely to rate many style points) and grab a bag of premixed intravenous Levophed. This medication is administered to raise blood pressure—it’s a drug I personally do not need at this point. My heart is pumping furiously, as if it might actually break the sound barrier. I dash back to my patient’s room, hook up the bag, and remain by the patient’s bedside for the next half-hour.

2245 hours – The bells are ringing, and all of them are for me. Has anyone done a study on how many things a single person can do at the same time? I need to clone myself (and preferably create a version without dystonia). Okay who gets priority, the bedpan-seeker or the hungry patient? No contest.

2300 hours – Here’s the good news: a knight in shining scrubs appears. His name is Stu, and he helps me turn my 300-pound patient. Here’s the bad news: the patient’s oxygen level is doing that downward slide. I’m hoping she doesn’t need to be intubated or put on a ventilator. I call the resident on duty and request a C X-ray order, praying that the patient isn’t retaining fluid.

I am retaining stress. This does not bode well for my next activity: writing status reports.

2320 hours – I start off with a bang but my hands have a mind of their own. I think, “write”. They think,“I’m cramping up, honey.” The hands win. Writing will have to come later.

2342 hours – Half a miracle: the C X-ray is done. The patient’s blood pressure has stabilized. But the blood bank remains a “no show,” and I really have to eat something and go to the bathroom. Can we get scrubs from NASA? Those spacesuits could work just fine.

2355 hours – I make an executive decision: I’m going to go to the blood bank and get my patient’s platelets. If we needed them before, we really need them now. This is not an order for pizza.

0010 hours – I’m still hungry. If I don’t sit down for five minutes I may fall over. I look up at the clock and ABILITY 39

Illustration by Vuokko Keiski

realize now would be a good time to start all of my chart work. For most nurses, this part of the job would be slightly more relaxing than the dramas taking place at the bedsides. With dystonia, however, this part of my day is a pain in the neck. In fact, it’s more than that: it causes hand cramping and pain. Fortunately I’ve mastered the art of two-fingered-typing. No speed records will be broken tonight.

0015 hours – The formerly elusive platelets now find a home in Patient #1’s blood stream. Patient #2 doesn’t look good, however, and her breathing is labored. I think she needs more than suctioning. An order goes out for a diuretic to get rid of some that water. This time we go for something formidable: 40 mgs of IV Lasix.

0110 hours – Some of my charting is completed, the platelets have infused, and the Lasix seems to be working, but now it’s time to turn over both patients. And I still haven’t eaten. In the background, I hear a nurse argue with the resident-on-call about an emergency room admission. What’s new?

There are not enough nurses on duty tonight (are there ever?). We are so short-staffed, in fact, that I already know I won’t be coming off duty in the early morning.

In nursing, the mantra is: “If it’s not documented, it’s not done.” Remember my typing skills? I won’t be leaving here for a while.

0130 hours – I notice bloody urine coming from Patient #1. Wondering if her liver is failing, I decide to draw her blood and send her lab work off early. She will need 40

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more platelets – she is not clotting well.

0140 hours – A patient is dying at the other end of the unit. He’s only 20 years old. His family is living by the bedside. No matter how many times I’ve seen this sort of drama unfold, it never gets any easier.

0210 hours – Now that all the labs and diagnostic tests are completed, Patient #2 (the 300-pound woman) raises my blood pressure to a nightly high. Her heart has gone into a lethal arrhythmia. I run into the room and pound her on the chest, hoping beyond hope to get a normal rhythm to return. My neck is killing me. The precordial thump works. EKG and complete labs are ordered. But her oxygen level has dropped again. Does she need even more Lasix?

0240 hours – As I’ve now become quite attuned to Patient #1’s platelet activity, I feel like celebrating as her number goes up from seven to...twenty-four! Just for good measure, the ENT guys order more platelets and some liver function tests. The patient’s blood pressure has remained stable. I finish my computerized charting entries. However, due to my dystonia, my arms hurt from hanging bags of platelets on a barely-reachable ceiling pole. What do shorter nurses do?

0300 hours – The few of us on the unit tonight have been running for what seems like forever. Forget ordering take-out dinners, forget eating the healthy snacks that some of us have packed. In between ringing bells and critical care nursing, we gulp down chips, soft drinks and the unhealthiest snacks imaginable. What if a

dietitian happened to decide to spend the night here?

0310 hours – The 20 year-old patient dies. I feel sad.

His parents are at the bedside. Morgue care is ordered.

0330 hours – My order of platelets is ready. I ask the unit clerk to pick it up, then I stop by the pharmacy for some newly-ordered antibiotics. The pharmacist, right here in this very large, very busy New York City hospital decides to let us know in no uncertain terms that the pharmacy doesn’t have the variety that we had ordered.

Am I in a new episode of The Twilight Zone? What kind of pharmacy is this?

0400 hours – Meanwhile, back on the floor, patient turning commences. What could be worse than trying to perform this task alone? Finding the bed and its surroundings soaked with diarrhea. This is a job for the true angels of nursing: the housekeeping staff. I clean the patient, give her a back rub and a respiratory treatment. Before leaving the room, I do a platelet check.

0430 hours – Platelets are done. Will this shift ever end?

Whatever could go wrong has already happened—or so I think.

Also, my feet hurt. Note to self (and to other would-be nurses with dystonia): clogs might as well be three-inch heels. A new emergency room admission arrives on the unit. The few staff who are left standing all help the patient settle in. We just want to sit down and go home.

0445 hours – Some of the routine things that nurses do are no longer easy for me to accomplish without help.

Night nurses are responsible for exchanging old IV tubes for new ones. This used to be a non-event, but now I can’t open the packaging without using scissors or a clamp or a helping hand. It’s frustrating.

0510 hours – A minor miracle: my paperwork is up-todate and there are only two more hours left to this awful night.

0522 hours – A colleague has trouble inserting an IV. I offer to help. Even though I am unable to turn my head the “right way” anymore, I can do IVs by instinct. With dystonia, you learn to make accommodations and work around physical limitations. Here’s my secret: I usually rearrange the patient’s room so that everything is in my line of sight.

There’s another thing of which I need constantly to be aware since I went through DBS treatment: electromagnetic interference. All those security devices may be great for the hospital, but they cause havoc on a pacemaker— and mine goes to my brain rather than to my heart. This is, among other things, anxiety-producing so my neurosurgeon has me take a mild dose of Klonopin to reduce stress. Did I remember to take it this morning? No. I will pay for that oversight on the bumpy bus ride home.

0547 hours – An alcoholic in withdrawal wanders out of his room. His IVs are in disarray, he has a bloody gown, his EKG monitor is off and he announces to all of us he is ready to leave. Perhaps we should call the bellboy for his luggage and have the front desk prepare his bill. He resists our attempts to cajole him back into bed and then hits one of the nurses. We call security and the doctors.

This guy ain’t listening to anyone.

0600 hours – Perfect timing. The head nurse walks down the hallway as the alcoholic makes his way to the nurse’s station. He’s spouting off four-letter words and making comments unsuitable for publication. Where is security? Are they in cahoots with the blood lab people?

I really don’t want to be a punching bag, even if I’m beginning to feel like one. If my muscles get any tighter, I may explode.

0610 hours – Security arrives. Using less than spectacular intervention skills, they tackle the patient. Now what? We decide to ship him to the psychiatry ward, STAT! 0624 hours – I check Patient #2 and discover more diarrhea—the type of diarrhea that irritates skin and is induced by antibiotics. To make matters worse, the 300pound lady can’t breathe when she’s in a prone position.

Getting her out of her bed is impossible, especially since I only weigh 115 lbs. I call my knight in scrubs, Stu, and we clean the patient up once again. Now I do the “uh oh” check. Are my neck wires still intact? Yes. I can exhale.

0645 hours – I go back to the charts and enter final vital signs. I also need to compute data such as intake and outtake of fluids. Have you ever had to estimate the amount of diarrhea produced by a patient? I must have missed this lecture in nursing school.

0710 hours – Patient #1 needs extra IV potassium. I grab a bag from the drug room and hang it on the IV pole. The day shift staff begins arriving. I actually have a minute to swallow a dose of my medication, relieving my dystonia spasms.

0726 hours – Before giving a verbal report to the day shift, I review any last minute orders to make sure nothing was missed. Nothing was.

0745 hours – Shift over. I can relax. At least until tomorrow. Scalp pain erupts. Neck twisting and turning begins. I just want to sleep. But I wouldn’t trade my job for anything. Nursing with a movement disorder is exciting, rewarding and absolutely do-able!

by Beka Serdans, RN, MS, NP Beka is an intensive care unit traveling nurse for American Mobile Nurses dystoniasociety.org dystonia-foundation.org

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Photo by: Nancy Villere - CrushPhotoStudios.com

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ith a career spanning more than 30 years, actor Alfred Molina’s colossal talent has earned him worldwide acclaim and memorable roles in films as diverse as Chocolat, Frida, An Education and SpiderMan 2. Molina’s latest venture brings his talents to the small screen, where he plays Deputy District Attorney Ricardo Morales in NBC’s Law & Order: Los Angeles. At his home in West Hollywood, Molina met with Law & Order co-star (and newly minted ABILITY editor!) Regina Hall, as well as ABILITY’s Chet Cooper, to discuss his career, education and the triumphant spirit of Joseph Kibler, a 21 year-old Auto Immune Deficiency Syndrome (AIDS) survivor whom Molina has come to call his friend.

Chet Cooper: Congratulations on your new series.

Alfred Molina: Thank you!

Cooper: Give me a little of your background. How did you get into acting?

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Molina: It’s the usual route. I went from secondary school to high school to drama school, and I graduated in 1974.

Cooper: So you knew you wanted to perform, even while in school?

Molina: Oh, yeah, I always knew. According to my mother, I was nine years old when I first said I wanted to be an actor. But I can’t imagine I really knew what I was talking about, in terms of what it involved. I just started doing school plays. My parents weren’t terribly supportive, not because they were against it, but because they just didn’t get it, really. So they were kind of like, “Oh, yeah, good, sure.”

Fortunately when I was about 12 I had a teacher at school named Martin who became something of a mentor to me. He was the first person who really took my acting seriously, and in a very practical way. He didn’t just go, “Very good, young man, very good, best of luck.” He said, “Okay, if that’s what you want to do, then you have to do this, this, this and this. You have to read this, this, this and this. You have to think about this, this, this and this. And if you don’t, you’re wasting your time.”

And he gave me a challenge. He said, “If you’re serious, I will do everything I can to help you. If I see for one moment that you’re not serious, I will wash my hands of you and you will never be able to ask me again.” I agreed to that, and I had a friend for life. We’re still friends. He’s retired now.

Anyway, Martin gave me books to read, stuff to look at, told me what to get. He was fantastic. I did school plays he directed. He started a drama club that I went to on Wednesday nights at school. I was there every night, without fail. All the geeks and nerds turned out for the drama club—all the kids who weren’t good at sports and weren’t terribly popular with the girls’ school.

Regina Hall: You were at an all-boys’ school?

Molina: I was at the boys’ school, and there was a girls’ school next door. As we got up to the lower-sixth and upper-sixth form, we then started having classes in the other school. So, in my last two years, I was in the girls’ school for economic history and English literature.

That’s when I learned that girls quite like the sensitive boy. They dig sensitive. I got that. (laughter) And that was the advantage I had on the other boys. In my last two years in high school, I dated quite successfully. For being one of the nerdy kids who wasn’t very good at anything but acting in school plays, I dated pretty well, and aimed pretty high up the food chain.

Hall: We love sensitive Fred.

Molina: I’ll never forget. I was 16 or 17, and I was taking a poetry class. The assignment was, bring in a poem, 44

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no more than 20 lines long—a poem that you like, a poem that you appreciate. Be prepared to read it to the class and discuss why this poem is of interest to you.

This was part of the course assessment, so it was quite an important deal.

Everybody came in with their poems, but I cheated slightly, as I was rehearsing a production of The Taming of the Shrew at the time. So I came in with a sonnet I’d memorized, and I got up there and the actor in me just couldn’t resist this moment. I started reading and after two lines, I put it down. I had memorized it.

I could see them all, the whole class, and all the girls were giving me that look. And I thought, “I’m in. I’m so in here.” And I can remember the feeling. “This is how you do it. This is how you do it!” (laughter) Because I’d tried everything else before that. I’d tried the comedy route, that didn’t work. I’d tried to look cool, that didn’t work. I’d tried the silent treatment, that didn’t suit me.

There was no point in trying to impress the girls with anything athletic or academic. That was just not going to happen for me.

Hall: So you went the heart route?

Molina: I went the heart route. And it worked.

Hall: See, that’s when the women start acting like this: “He is just amazing!” Suddenly we don’t even like who we’re with anymore. “You know what? I’ll tell you what I can’t stand about my guy!” (laughter) “He never reads poetry, ever!”

Molina: But the thing was, I’d memorized the poem!

That’s what did it. Anyway, around that time, I started working. I left drama school in ‘75, and I started working. My route has been pretty standard, really. There wasn’t some great break-out role early on. I just worked.

Cooper: You weren’t sitting on a barstool and somebody walked by and said—?

Molina: What did somebody call it? The Swabs drugstore routine? That’s not what happened to me at all.

Cooper: Have you had any actual “job” jobs?

Molina: I had some job jobs when I was at drama school, when I was studying. During my first year I had a couple of job jobs. I worked as a waiter for a while: the usual story. And I also worked as a hospital porter.

In America you call that an orderly. I worked as a hospital porter in a geriatric hospital for a couple of months, and I actually enjoyed it. It was really interesting. I enjoyed all those old biddies. They were great fun. The worst part was that we were responsible for taking any of the cadavers down from the wards to the mortuary.

Cooper: People who had died?

Molina, with Law & Order: Los Angeles co-star Regina Hall, on the set of their new NBC drama series.

Molina: Yeah. But the nurses wrapped them all up. We just had to transport the bodies and do the paperwork.

But overall I enjoyed that job. I met people. I felt in some small way that I was helping. And the other guys with whom I worked were an interesting bunch of people: young guys, older guys. And of course, I was at the age at which every experience was brand new, so I had a sense that this sort of thing could be exciting. And I also knew that it was a temporary job, so it wasn’t going to be my life.

Cooper: Do you do any work today with nonprofits?

Molina: No, nothing with nonprofits or anything like that. The only thing I’ve been doing over the years is teaching for free.

Cooper: Is that your way of giving back, after having had that influential relationship with a mentor?

Molina: Oh, I don’t think I’m doing for these students what Martin did for me. I don’t think I’m quite that much of a life-changer. But I do think teaching is a good way of giving something back. I’m not an academic, so my approach to the work is vocational. But after 35 years of acting, you pick up some stuff and you learn stuff, and what are you going to do with it, other than

either pass it on or leave it behind?

I don’t need to teach for a living. I make a nice living, so I can do this for nothing and for fun. It can be as much fun for me, hopefully, as it will be instructive or interesting for the students. I’ve been teaching for about 20 years, and it happened almost by accident. I had been asked by the dean of my drama school to fill in for a teacher who had pulled out of a two-day class. The school was desperate and asked me to come in and do some coaching. And I said, “I’ve never done anything like this. I have no idea what’s going on.” And they said, “Don’t worry, it’s nothing big. They’re just working on their audition pieces and we just need someone to give the kids a few pointers.”

So I turned up, and my two students were Joseph Fiennes and a young man called Stuart Bunce, who is now a very well-known actor in London. They were just kids then. Students. I worked with them on a couple of pieces, and I enjoyed that much, much more than I’d expected. I’d thought I was just doing someone a favor, but it turned out to be incredibly stimulating for me.

And these guys were asking me questions, and I was rather happily discovering that I knew the answers.

Cooper: Tell us a little bit about how you met Joseph Kibler.

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Molina: I took part in the Los Angeles AIDS Walk, maybe 14 years ago, with a group of friends. It was a lot of fun: a big day, lots of flags, people in costume, just as it was this year. I’d never gotten involved in it in subsequent years, apart from sending money, because I’m often away, working. So I suppose recently part of my process of coming back home, as it were, is to get involved again with things that I did before I was traveling all the time.

This year, as the day of the walk approached, our makeup artist on Law & Order mentioned it. I started writing out a check, just to make a small donation, and suddenly I said, “I could do the walk this year! It’s next Sunday.”

Then I got an e-mail from a young man, a film student, who has been making a documentary over the last year or so with a young man called Joseph Kibler.

Joe is about 21 now and is studying to be a digital film editor. Joe was born with AIDS—his mother was infected by his father, though she was ignorant of that fact when she was pregnant.

Cooper: Are Joe’s parents still alive?

Molina: His mother is. She’s been living with AIDS all this time and seems to be managing pretty well. But the additional complication of Joe’s infection was that he was born paraplegic, without the use of his legs. And he was not given a very long time to live. The knowledge that we had about AIDS 21 years ago is nowhere near what it is today. The scale and the range of drugs and the cocktails was very experimental 21 years ago. So I don’t think any doctor or any specialist, such as they were then, would have given Joe much of a chance.

But Joe, being the man he is, persevered, went to school, and is doing very, very well. Although his prognosis at the time was that he would never walk, because his legs were completely withered, he refused to accept that. He started working very hard to get his legs. He graduated to a wheelchair and then to walking with crutches. Today he spends part of his time in a wheelchair and works really hard—two hours a day, every day of the year—walking around the sports track near where he lives, just to keep his legs working. He did the AIDS Walk with the use of a cane.

the walk, about AIDS?” So I met Joe. He’s a very smart, lively, funny young guy, and we talked about everything under the sun. We talked about him the least of all.

Cooper: Did you win?

Molina: (laughs) Sadly, because he walks so slowly, Joe has to walk last, because the organizers can’t take the risk of him starting at the top or being in the middle.

People like to speed-walk, and many people use the AIDS Walk as a workout. The possibility of Joe getting knocked over would have been terrible, because he can’t get up on his own. So we started walking as the main body of the Walk had already departed. But it was great.

Cooper: Do you know if Joe went through a specific therapy program?

Molina: I don’t know what Joe’s regime has been in the past, but I do know that for the purposes of the Walk and for the purposes of the documentary, he was on a very strict regime for which he was walking two, twoand-a-half hours a day. He was getting massages, he was working with a trainer, stretching. He has very limited musculature in his legs, so he has to work really hard—much harder than you or I would—because of sheer lack of density of muscle.

Cooper: And once the muscles atrophy like that— Molina: The fact that Joe can actually support himself on his legs is quite a feat. He’s not “able” in the sense that he can trot around. He does spend part of his day in a wheelchair. But the fact that Joe could get himself together for the Walk to show that AIDS can be livable is impressive on its own.

Hall: What do you most remember from your experience at the Walk?

Molina: At one point, towards the end of the Walk, I asked Joe about his dad. I learned his father had been a junkie and had contracted AIDS through use of dirty needles. Joe started telling me about his relationship with his dad, and about the people Joe had been interviewing on behalf of the documentary—people living with AIDS.

Hall: How many miles was the Walk?

Molina: Just under seven. Not a long walk by arctic discovery standards or anything like that, but for someone like Joe it’s a big one. And he’s been doing that walk every year for some time now.

Cooper: And you walked with him?

Molina: I did. Mark Bashen, who is making a documentary on Joe, said to me, “Seeing as you’re doing AIDS Walk anyway, would you be interested in walking with Joe so we could film you and Joe in conversation about 46

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He started telling me about all kinds of people and all kinds of backgrounds, all kinds of reactions, all kinds of states of mind in respect to AIDS. There are people who are embracing it, people who are in denial, people who are deeply, deeply angry because they contracted it, people who are really almost careless about their condition.

And there was one person Joe had interviewed who had really upset him: someone who was so depressed with life he had decided deliberately to contract AIDS in order to die.

When Joe started telling me that person’s story, I could

I was stunned. If Joe were given the choice never to have had this illness, he wouldn’t change the way things are— regardless of all of the stuff AIDS has denied him—because the disease has, in some way, defined him. It’s defined his life and has given him, I presume, some focus or purpose or some sense of—

Photo by: Nancy Villere - CrushPhotoStudios.com

see he was really upset. Upset that anyone could want to do something like that, that anyone could actually seek that out. And I asked Joe, “Does what happened to you make you angry?”

And he said, and I know he meant it, “If I could have all this all over again, I wouldn’t change a thing.” That just knocked me for six.

Hall: A gift?

Molina: Yeah, some gift. Most of us never think of disease as a gift. No one ever thinks of being ill as something that can do him good, on any level, physical or spiritual.

Hall: The gift is perspective.

Molina: But I think in some way it’s unique to Joe. I think his perspective is that this life he’s been given isn’t something to be dismissed or despised. It’s what he is.

I asked Joe, “Were you ever angry? Did you ever reach a point where you were screaming in the night, wondering, ‘Why me?’” I suspect that is what I would be doing. But Joe made an interesting point. He said, “The only question you ask yourself is, ‘Why not me?’

That’s the only question worth asking.”

Just on a philosophical level, that’s quite a big idea to get hold of, sitting here as we are with our health and comfort and discussing it objectively. It’s an interesting question, isn’t it? But when you’re living with that illness every day, that’s a big, big thing.

Hall: Unusual, to be 21 and have that kind of wisdom.

Molina: Yeah. His generosity really hit me. And I found myself getting very welled up. I found it a little bit hard to talk to him after that for a while, because it was such a huge thought, such a huge idea.

Exhausted after the AIDS Walk, Joseph Kibler embraces new friend Molina.

Cooper: It stuck with you.

Molina: I’ve thought about it a great deal. It’s an eyeopener, really. If you’re brave enough and strong enough to seriously believe in that philosophy, without it being some kind of self-aggrandizing palliative, that empowers you in the most extraordinary way. I’ve never been really, really ill. I’ve broken a toe, I’ve ABILITY 47

had influenza, I’ve gotten double pneumonia that put me in bed for a week. I hope those to be the worst of my problems. But when you’re living with something as hugely emphatic as AIDS, or with a really serious cancer or whatever it is, to somehow embrace it and say, “Why not me?” has got to be monumental.

Hall: Especially when you’ve done nothing of your own action to acquire the condition.

Molina: I’ve met people who have had cancer, but they’d smoked all their lives, or they’d lived in a way that, no matter how generous you are, causes you to think, “Well, you kind of asked for it. You were flirting with disaster.” If you’ve been smoking two packs a day and suddenly your doctor says, “You’ve got to quit because you’ve got lung cancer,” I suppose maybe there’s a part of your brain that goes, “Well, I guess it was inevitable.” But if you’ve done nothing wrong, if you’ve done nothing to warrant this condition or merit it or earn it, that must be a different feeling.

Hall: Since AIDS has now been around for decades, sometimes it seems that it’s not as publicly impactful today as it was when it was a new disease.

Molina: And I find it amazing that people still think of it as a gay disease.

Hall: Its largest demographic is actually black women from the ages of 18 to 35.

Molina: It’s also getting higher among Latino men.

Hall: Is it your hope that this documentary, this Walk, will help awaken people who have gotten too comfortable with the existence of AIDS? Get more people to realize it’s a real threat to them?

Molina: None of us can be above it. When AIDS ceased to be a headline, it became easier to, in a sense, dismiss it from the forefront of our minds—if it’s not in the headlines, it must be contained. You hear one or two stories of someone successfully living with AIDS, coping with it, dealing with it, and you hear about some advance in the treatment of AIDS. Then you go, “Oh, I can relax about that one. Let’s worry about adult-onset diabetes now.”

Whatever is grabbing the headlines is our preoccupation. But the truth is, if AIDS is here to stay, then we need to think about AIDS in the same way in which we think about cancer, about autism. It’s a condition of humanity. It’s not just some weird thing that’s here to visit us for a while and then will clear up and go away.

It’s a bona fide disease. There can be no moral judgment placed on it. We don’t morally judge people when they get cancer, unless they’ve kind of asked for it.

We can moralize about people smoking cigarettes, but until smoking is made illegal, nobody has a leg to stand 48

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on. We don’t moralize about people’s illnesses. We moralize about their responses to their diseases, but we don’t say, “You’re a bad person because you’ve got cancer.” So we need to cease moralization about AIDS. Unlike the other big diseases, AIDS still has a political, social, and moral dimension to it. If the largest affected demographic were that of white, middle-aged men, this disease would have a s--tload of money thrown at it.

But as long as it’s predominantly targeting gays and blacks and Latinos and weirdos, then we’re fine. That kind of ignorance that needs to be dealt with. I don’t think anyone can really get away with saying, “AIDS? What’s that?” Those days are over. We’re way beyond that. Now the subtleties of the disease need to be addressed.

Hall: I’m like, “You know what? I protect myself, so it’s not really a disease that affects me.” But truly, if it affects one of us, it affects all of us.

Molina: I remember hearing stories in the ‘80s about AIDS—or SIDS, I think it was called at one time. The idea was that it was affecting all of these young gay guys in San Francisco. They were all dropping like nine-pins.

They were getting it from having sex with each other, from this and from that. Even amongst sensible, intelligent, upright people, I remember hearing, “It’s the gays.

It’s a ghetto disease.” Sometimes we seem not to have moved on from that mindset. And that worries me.

Babies get AIDS through no fault of their own.

People were getting it through transfusions. There’s more control over British people donating blood in America, because of mad cow disease, than there are controls for checking people for AIDS. I can’t be a blood donor in this country because I’m British.

Hall: I think too often we see somebody like Magic Johnson and we think, “Oh, you can live with AIDS.” He looks normal and healthy. There’s still so much ignorance about the disease, the drugs, how they all affect you. And because AIDS is no longer a priority in the news, I think there’s a generation that doesn’t find it as dangerous as it really is, because it’s not really talked about.

Molina: There are definitely advances being made, however. Joe told me, for instance, that when he was younger he was on 25 different drugs a day. And no one really knew what the side effects of those drugs were, what the interactive effects were. Now he’s down to five meds a day. That’s an amazing advance when you think of the quality of people’s lives. But the disease is still there.

Not all of us can be experts, doctors, scientists, researchers.

Not all of us can discover the cure for something. But if as a community we’re aware, if we’re more aware of the conditions, the causes, the impact, the results, the effects of all these things—things that people are living with

Photo by: Nancy Villere CrushPhotoStudios.com

Molina sets the scene for ABILITY’s Chet Cooper and Regina Hall.

constantly—I think it just helps us to reach out and not be frightened.

AIDS. In the ‘80s it was, don’t shake hands with someone with AIDS. Don’t let their sweat get on you!

Hall: Does Joe live on his own?

Hall: There was a lot of ignorance.

Molina: No, he lives with about four roommates, here in LA They were all students at the LA film school together, and I think two of them still are. They’re all very close. They all help him, so it’s as if he’s got a family.

He’s well looked after.

Molina: Oh, unbelievable. Joe told me about some of the stuff he has to deal with when he goes swimming, for instance. Just to go swimming in a public pool.

Word gets out that this boy has AIDS and people are pulling their kids out of the water, even today. And you think, “That doesn’t help anybody.”

The focus of his movie deals with him interviewing other people living with AIDS, as well as with his preparations for the Walk. He really, really worked hard. Mayor Villaraigosa inaugurated the Walk this year, and Joe tried to get in line to talk with him. Joe didn’t succeed, however, and he came back to us and he said, “I’ve just been snubbed by the mayor.” I said, “Did you get it on film?”

And he went, “Oh, yeah!” (laughter) You know, it took me ages and ages to understand you don’t have to be afraid of someone else’s disease. The disease doesn’t define the person. It might impose limitations, it might leave someone in bed or stuck in the house. It might put someone in a home. But it doesn’t change the person.

I’m a bit ashamed of myself in many ways, because it took me a long, long time to learn this truth. I had all the usual panics about, how close do I get to people with illnesses? What kind of risks am I running? And there’s a lot of fear-mongering that goes on, particularly in respect to

We learn this stuff. We’re not born with it. I remember when I was a kid, I was with my mother, and we saw a guy in the street who had clearly had a terrible injury, maybe as a result of the war. We saw this man was very, very badly deformed. One whole side of his face looked caved in, like it was missing. He had a big coat on, with a collar, and it was clear that maybe he had no jaw. It was as if one whole side of him were torn away.

He was walking towards us and, in my youthful ignorance, I just stopped and stared at this man. I remember my mother just yanking me out of the way, saying, “Don’t look at him. Don’t look at him!” As if somehow I would catch something. And you learn from that moment. That jogs you, so the next time it happens, you do it for yourself: you look away. We have to unlearn all of that stuff as we get older. Some people never do. walkondocumentary.com (Joseph Kibler’s film) nbc.com/law-and-order-los-angeles ABILITY 49

Motorcyclist Malcolm Smith cruises to victory at the Baja 1000.

Smith, who today, manages his own motorsports dealership, is a six-time champion of the race.

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eeting up with Malcolm Smith stands as one of the most unique interviewing experiences of my life. Seated in the large showroom of Malcolm Smith Motorsports in Riverside, CA, I find myself mulling over a variety of ways to approach my introduction. Do I start off with, “Hey, how have you been? Long time, no see”? Or maybe, “Hi, I’m with ABILITY Magazine. I’d like to take a minute of your time”? Or what about, “Should I have set an appointment?”

Yes, this is indeed a surprise visit. My thoughts rush upon me, awkward and stumbling. But why should I be nervous? After all, I’ve had sit-downs with plenty of famous, high-powered people. And yes, Malcolm Smith is famous. Famous for his many bike races, and famous for winning. Most of all, he’s famous for On Any Sunday, a documentary in which he starred with Steve McQueen.

That film has developed something of a cult following.

Today Malcolm Smith is grey-haired and nearing seventy. But years ago, kids like me marveled at his skill, speed and charm. Fans of all ages were wowed by his bravery and strength. But my connection to this icon is of a different kind altogether. In short, Malcolm Smith changed my life.

As a teenager, I moved from the Pine Barrens of New

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Jersey to the motorcycle mecca of sunny California with a dream of racing motocross. (And after that? Well, maybe then I’d start thinking about college.) Upon arriving in Southern California, I tracked down the great Malcolm Smith—I was riding Huskys at the time and he was a major Husky dealer—and informally “auditioned” for him. Apparently he liked what he saw. He gave me a job.

It might not sound like much on paper, but at the time, it was the biggest opportunity of my life—a circumstance that many back home couldn’t even believe. While out chasing my dream, I not only got to meet a legend in the field but had also been hired to be his salesperson. I seemed to have fallen into a lucky wormhole. My new boss would power my racing dreams, I was certain, and maybe someday soon I’d be racing my Husky with fellow rider Steve McQueen.

That’s not exactly how it played out. In fact, Malcolm fired me after my first day on the job. As high as I had felt just a day earlier, I suddenly felt just as low. I gathered myself up and changed my plans. Instead of pursuing motorcycling, I went to college—a decision that led me to writing about my encounter with Malcolm Smith in this magazine I created 20 years ago.

And today, meeting with Malcolm again after all these years, I find that I am nervous. Though Malcolm is

Malcolm’s personal bike museum in Riverside, CA.

Malcolm with countrywestern singer and fellow rider Lyle Lovett.

Malcolm (left) chats with actor Steve McQueen (center) during filming of On Any Sunday.

older now, he still has that memorable handshake, with hands like a vice from years of hard riding. I’ve started riding again, too—but my handshake is more like that of a marshmallow.

Malcolm and I sit in his office, where I share my story.

He says, “I remember your face, and I know the salesperson who was working at that time, but I don’t remember that.” You see, Malcolm had fired me the first day on the job because his one and only salesman had quit and then had returned. Malcolm could only afford to keep one salesman at that time. I had to go.

Today Malcolm Smith Motorsports has over 50 employees. Before the financial slow-down, it had boasted close to twice as many. His eyes gleam as he tells me about his latest adventure: “This is the newest thing I ride,” he says. With a smile, he shows me a video on his iPad. I can’t quite figure out what I’m seeing—and I certainly don’t understand what he means by ‘ride.’ I see what looks like a whale. But where’s the motorcycle?

“Watch,” he says. “That’s me. And those are my kids.

On a shark.” Malcolm points to the screen. “Largest fish in the world. It’s called a whale shark. It’s a filter feeder.” The underwater footage shows Malcolm and his adult children, each equipped with snorkels, holding onto the dorsal and tail of a huge sea creature.

I imagine this is about the strangest thing Malcolm could have shown me. But then I find his little aside is connected to a deeper meaning: in 1995, Malcolm and his motorcycle buddies began taking trips to Mexico, where they started a non-profit and built an orphanage called El Oasis. The bay near that orphanage happens to be the feeding area for about 20 whale sharks.

Malcolm and I talk about his trembling hand. Diagnosed with Parkinson’s disease eight years ago, Malcolm tells me he went to Europe for stem-cell therapy but found it a waste of time and money. I ask if he has ever thought about deep brain stimulation (DBS), a procedure in which a probe is inserted into the patient’s brain, allowing doctors to map out areas of concern. I’ve seen firsthand evidence of the surgery’s efficacy. Malcolm says he doesn’t know if he’s ready for that just yet. (See pg.

54 for more information on Parkinson) The more time Malcolm and I spend together, just talking, the more aware I become that he hasn’t taken his medication. His hand begins twitching. I mention this to him and learn his medications are in his car. I urge Malcolm to go out and get them. “I do well with the meds,” he says with a half-smile, “but I don’t always take them on time.” I suspect his doctor would not approve of this self-guided medication schedule.

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Between 1966 and 1976 Malcolm Smith won eight gold medals in the International Six Day Trials, the European cross-country event considered by many to be the Olympics of motorcycling.

Because numerous people angle to talk to Malcolm as we walk through his shop, it takes almost 30 minutes for us to leave. On our walk, Malcolm decides to share some of his family background. His father met his mother while traveling in Alaska, he says with a glow in his eyes. “The two hiked up a mountain together and talked for a long time. A day later, they got married.

When I was born, my mom was 33 and my dad was 81”.

After Malcolm’s father had died, Malcolm’s mother reconnected with her first love, and they married.

Malcolm grew up with his step-father. Was there a chance that Malcolm’s step-father might have actually been his father? Malcolm says no. The family resemblance is too strong, he says, between himself, 52

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his father, and his own son.

In 1998 Malcolm Smith was inducted into the Motorcycle Hall of Fame. Today he oversees his motorcycle dealership and conducts special invitation-only, off-road rides in Mexico and South America. On the television program National Geographic Explorer, Malcolm Smith was profiled with singer Lyle Lovett on a motorcycle ride in Chile. Parkinson’s hasn’t slowed down Malcolm’s riding one bit, and he still finds time to give talks about the early days of off-road riding and preservation of riding areas. If you ever want to join Malcolm for a ride, there’s only one condition: no wimps. After all, he’s still a legend. malcolmsmith.com

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I

n 1817, English apothecary James Parkinson documented a “shaking palsy” in some of his patients.

Today the disease that bears his name remains a sobering medical reality: approximately one million Americans suffer from Parkinson’s disease (PD) and about 50,000 new cases are diagnosed each year.

As it is a neurodegenerative disease, PD is a progressive condition. It results from deterioration in an area of the brain known as the substantia nigra, a region of cells that control movement. The primary job of these cells is to produce a substance known as dopamine—one of many substances called “neurotransmitters” that facilitate communication between brain cells (neurons).

No scan or lab test is available by which to diagnose PD, leaving the condition only identifiable by way of its symptoms and physical manifestations. The disease begins insidiously and progresses gradually, often emerging as a barely detectable hand tremor. This might be followed by loss of facial expression, difficulty initiating movement, mumbled speech, or a lack of arm-swinging while walking. In advanced stages of PD, dementia may manifest.

Additional problems known to affect people with PD include sleep disturbances, difficulty swallowing and chewing, problems with urination, constipation, and loss of libido. It should be noted that several other diseases are comprised of some of these symptoms and can easily be confused with PD. For example, multiple symptoms of Alzheimer’s disease overlap those of PD. Though the precise cause of PD remains unknown, research has raised the likelihood that a variety of factors may be involved. Changes in a person’s genes, either by way of inherited or environmental factors, are suspected. Toxins or certain viruses in a person’s environment may also trigger signs of the disease.

Certain risk factors for developing Parkinson’s disease have also been identified. People with family members who manifest the disease have increased risk for PD, although not to a great extent. Research indicates men are more likely to develop the condition than are women, and the disease seldom occurs in anyone before late middle-age. Constant exposure to certain herbicides and pesticides has been associated with a greater risk of Parkinson’s disease.

Changes in brain chemistry are characteristic of Parkinson’s disease patients. One noteworthy neurological 54

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alteration is the loss or failure of a special collection of cells in the brain that produce dopamine, a chemical messenger. Many of the neurons that communicate by way of dopamine are involved in movement. Norepinephrine—a neurotransmitter involved with the autonomic part of the nervous system—is also deficient in the brains of PD patients, a fact that can influence digestion and blood pressure regulation.

Despite the unanswered questions and harsh symptoms that remain aligned with Parkinson’s disease, medications for the condition can yield a dramatic and positive effect. The most effective of these medications, levodopa, is a natural substance that (when taken as a pill) converts to dopamine inside the brain. However, this drug has to be combined with a drug called carbidopa that prevents levodopa’s conversion to dopamine before it reaches the brain. The combination of these drugs— known as Sinemet—helps a patient avoid potential side effects, particularly nausea.

After prolonged use of the drug, however, the effects of Sinemet tend to wear off at an accelerated rate. Further complicating matters, the Sinemet dosage sometimes has to be lowered to reduce side effects. Both of these issues lead to poorer control of the symptoms of PD. Drugs that mimic the effects of dopamine, called dopamine agonists, are also used in the treatment of Parkinson’s disease, but they tend to be less effective than those drugs previously mentioned. On the other hand, dopamine agonists do not tend to wear off as quickly and can be used to help smooth out the waxing and waning of Sinemet.

Medications used in the treatment of PD have many unpleasant side-effects. These include hallucinations, involuntary jerking of the extremities, drowsiness, nausea, and a sudden drop in blood pressure upon standing.

In addition to use of medications, surgery can play a role in treatment of PD symptoms. Typically, however, such measures are reserved for patients who suffer disabling side effects from medications or who experience poor control of their symptoms.

Until recently, surgical treatment of PD had involved placement of a small probe into a particular area of the brain, destroying that area and resulting in diminished tremor and improved movement. Lately, however, use of a small electrode in a different area of the brain has proven more effective. During surgery, this electrode is connected to a continuous stimulator that is permanently implanted under the patient’s skin. Like any surgery, this procedure (called Deep Brain Stimulation) has risks, such as infection or brain injury caused by bleeding or stroke. Such outcomes, however, are rare. parkinson.org

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O

riginally from Warrington, England, Victoria Taylor lives in South West Wales with her husband, Robert, and their two children, Christopher and Adele-Caitlin. Robert and Victoria had been happily married for seven years when Robert was unexpectedly diagnosed with intracranial hypertension (IH), a neurological disorder in which the pressure of cerebrospinal fluid within the skull is too high. The disease forced Robert to end his successful teaching career.

young to understand what her life was like, let alone to empathize with how she felt. Adele-Caitlin felt as if no one understood her.

Because Adele-Caitlin was only two years old at the time of her father’s diagnosis, she had little memory of how Robert had been prior to his illness. It wasn’t until she had started school that Adele-Caitlin began to realize her dad wasn’t like other dads.

With the development of Caitlin’s Wish, Victoria set out to create a story that would aid children who are too young to access support networks for young carers of people with IH. She hopes that her work will prompt children to draw strength from positive elements in their lives, instead of dwelling on the negative.

Adele-Caitlin felt confused, sad, angry and isolated.

Why did her dad have to be ill? Her friends were too 56

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Concerned for her daughter, Victoria looked for books that might help Adele-Caitlin cope with the family’s circumstances, but her efforts proved fruitless. At AdeleCaitlin’s urging, Victoria decided she herself would write a book for her daughter. Caitlin’s Wish was born.

What follows are excerpts from Caitlin’s Wish.

“HOME SWEET HOME” Our story begins in a small village in the Welsh countryside. It was a friendly place where everyone knew each other. It was a very old village made up of stone cottages with big, oak beams inside. Most of the cottages still had wood-burning stoves and roaring coal fires which kept you snug and warm on a cold winter’s night.

Behind the cottages there was a large meadow which led onto the mountainside. The meadow was covered in beautiful wildflowers which were all of the colours of the rainbow. All the children loved to run and play in the meadow.

One such child was a little girl called Caitlin. She was small for her age, with pretty, hazel-green eyes and beautiful brown hair which fell across her face so she could hide behind it if she wanted to.

Caitlin had a wicked sense of humour and was always making people laugh. She could make even the grumpiest person smile.

Caitlin’s big brother was called Chris. He had bright blue eyes and short blond hair which spiked on top of his head (“Like a hedgehog,” Caitlin said). Caitlin and Chris were the best of friends, as well as being brother and sister.

Caitlin also had a special friend called Rufus, but Rufus wasn’t a little boy. Oh, no, Rufus was actually a cheeky little robin. Caitlin had fed him every single day since he was very small. Over time, Rufus had learned to trust Caitlin and he became her friend. Every day he would sit on the windowsill and listen while Caitlin told him all her news.

laughter. It was a great place to be! Chris and Caitlin always had lots of fun playing games with the other children, and they loved it! They were never bored or lonely.

Chris and Caitlin’s dad worked away from home during the week, but once the weekend arrived he spent all his time with them. If the weather was nice, they would go on camping trips in the mountains. They spent their days lazing by the river catching fish, or cycling through the countryside. Sometimes Dad would take them boating on the lake, or even canoeing. It was so much fun!

If the family didn’t go away for the weekend, Dad would take Caitlin and Chris on long walks in the forests and woodlands near their home. Dad loved teaching the children all about the animals and birds.

One such time springs to mind.

“DAD’S ADVENTURE” Dad had just finished helping the children with their homework, and it was a beautiful day outside. The April sunshine was streaming through the kitchen window as they all closed their books and got up from the table.

“Okay,” said Dad. “Who wants to go on an adventure?”

“Ooh! Me, me, me!” replied the children.

Mum was baking in the kitchen. She turned and smiled.

“Go on then,” she said. “Off you go. It’ll be a while before I’m finished here.”

“Right, then,” said Dad to the children. “Put your boots on.”

“Where are we going?” they asked.

He never answered back, though. After all, robins can’t talk, can they?

“You’ll find out in five minutes,” replied Dad.

Chris and Caitlin’s mum was a childminder during the week, so their house was always filled with fun and

The children quickly put on their coats and boots and were out of the door in a flash. They linked arms with ABILITY 57

their father and chattered merrily as they walked along the old cart road into the forestry.

“Okay, let’s play a game,” said Dad. “Who can find clues to guess which animals live in the forest?”

“I can! Look over there!” Caitlin said, jumping up and down, excited. “I can see rabbit holes! That means rabbits live here!”

“You’re right!” said Dad. “Well, aren’t you clever?

Look over there, Chris. Can you see them?”

“Oh, yes, I can,” said Chris. “Well done, Caitlin.”

As Dad and the children walked farther along the path, Chris suddenly covered his nose and pulled a face, saying, “Urghh. What’s that smell?”

Dad burst out laughing. “That’s a fox smell,” he said.

“They mark their territory with their scent.”

“Urghh. That’s revolting,” said Chris.

“That’s nature,” said Dad, still laughing. “Let’s go and have a look what we can see in the stream, shall we?”

They turned off the cart road and started to walk across the meadow. “Ah, I never get tired of this view,” Dad said as he looked at the mountains in the distance.

“I know. It’s lovely, isn’t it?” said Chris.

The April sunshine felt warm as Dad and the children walked along. The only sounds they could hear were of birds singing in the trees. Nature was finally waking up again after the long winter, and the meadow was covered in beautiful spring flowers gently swaying in the breeze.

A stream ran alongside the edge of the meadow. As the family got closer to it, they could see dragonflies skating across the top of the water.”Look!” said Dad. “They 58

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look like fairies dancing.”

“Don’t be silly, Daddy,” said Caitlin with her hands on her hips. “They are dragonflies. Fairies don’t exist!”

“Shh!” said Dad, quickly. “Fairies are real, and they can hear you! You’ll upset them if you’re not careful!”

Caitlin looked down at the floor, not wanting to argue with her dad, but still not believing him. “Come on,” Dad said. “We’ll sit on the riverbank over there. Now sit still and be very quiet.”

They didn’t have to wait long before they saw brown speckled fish swimming in the stream. “Wow!” Caitlin exclaimed. She heard a popping sound coming from the water. She looked around to see what it was.

What she found looked like a baby lizard. “What is that?” she asked her dad.

“That’s a newt,” he said. “The popping sound you heard was it coming up out of the water to breathe.”

“CAITLIN’S LOST SMILE” It started slowly, with Dad being ill when he came home on the weekends. Everyone just thought that he’d been working too hard.

Dad didn’t have the energy to do any activities with Chris and Caitlin anymore. He spent most of his time asleep in bed. It was getting worse every time he came home.

Dad wouldn’t go to the doctor though, because he was convinced there was nothing to worry about. He just thought he had been working too hard.

It was only when he took some time off work that Dad realised how ill he was. He began to look very poor and was rushed into hospital. Chris and Caitlin were terrified he might die, and for a while the doctors didn’t know what was wrong with him. Eventually they worked out

that Dad had an illness that caused horrible symptoms.

Life would never be the same again.

IT WAS TOO QUIET! Caitlin hated it!

Dad was too ill to work anymore and he was in a lot of pain. Caitlin and Chris felt so lost. Their lives were changing before their eyes and there was nothing they could do to stop it.

The whole family was angry. “Why us?” they’d ask.

“Life’s not fair!”

Mum had to give up her job to look after Dad and everything in Chris and Caitlin’s lives changed. The children became inseparable, each leaning on the other for support. They both thought no one else could possibly understand how they felt.

Mum spent a lot of time talking things through with the children. She explained that Dad was always in pain, but that he had good days and bad days. On a good day Dad would not be in as much pain. So on those days they would enjoy time together as a family. However on the bad days, Dad would hardly get out of bed, and life would be very difficult. Mum explained that Dad wouldn’t die from this illness, but that he would be ill from now on.

Each of the children coped differently. Chris found it easier to adjust than did Caitlin. He was a quiet child who enjoyed studying.

Caitlin was a bubbly personality who would sing at the top of her voice all day long. Because Dad needed rest, Caitlin could still be noisy outside, but she couldn’t be noisy inside the cottage anymore. This was really strange. With Mum being a childminder the cottage had always been noisy—very noisy—with lots of children running around.

Now, it had to be quiet.

She wanted life to go back to the way it was before.

Deep down, though, she knew that was impossible. It was like being in a nightmare she couldn’t wake up from.

On the good days, Dad would spend time with the children. They both treasured those moments dearly. On the bad days, though, Dad would sleep nearly all day. The children had to be quiet so as not to disturb him, which made life miserable.

Occasionally Caitlin’s mum would get upset because their lives had changed so much. Caitlin would give her mum a cuddle and wipe away her tears. It made her sad to see her mum cry.

She hated it.

Of course Caitlin didn’t tell anyone how sad she felt, apart from Rufus. She poured her heart out to him. She trusted him. What could he do though? He was just a little robin. He couldn’t change things for her. Could he?

Caitlin’s smile was definitely lost. She couldn’t think of anything she had to smile about. She had never felt so sad and alone.

However, Caitlin didn’t know that by talking to Rufus she was actually asking for help. She could never have dreamed what was about to happen next.

A percentage of profits from each Caitlin’s Wish sold will be donated to: IH Research Foundation ihrfoundation.org and Crossroads Care crossroads.org.uk

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first group; the neurologist who checked in on me was in the second.

Dr. Nick Mills approached my bed after reading my chart. I liked this guy already. He was prepared; he was eager to help. He could read. He even looked at me when he talked. (And not like he was sizing me up to figure out how many payments on his Jaguar I was worth.)

Dr. Mills brought out a stainless steel tuning fork and checked my ability to feel vibrations (all Beach Boys references aside). He looked into my eyes with that red light gizmo and then...he carefully unwrapped a extremely large safety pin.

“They issue you those diaper pins in medical school?” I asked. He smiled.

Then he proceeded to poke me like a baked potato getting ready for the microwave.

“Can you feel this? This? This?”

“No.” He touched my face, “And this?”

“Yes.” “And this?” He brushed my left cheek.

“No I can’t feel that.”

He frowned. I was enjoying the game, but decided to cut him a break.“I can’t feel anything there because I had a facelift four years ago,” I said. “And it’s still numb.” I could see the beads of sweat on his forehead retract back into his skin.

T

he following excerpt is from author Sally Franz’s novel Scrambled Leggs: A Snarky Tale of Hospital Hooey. The author has transverse myelitis, a rare neurological disorder of the central nervous system, and became paralyzed within 30 minutes of first feeling her symptoms. Her novel takes a humorous look at dealing with the unexplainable—and also takes some shots at her experiences with hospital care.

“IN THE NICK OF TIME” There are people who are simply in the right place at the right time and there are people for whom, no matter where they go, time becomes the right time. I’m in the 60

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“Well,” he said. “You are my first patient up here at the ski resort because I’ve just retired. I have never seen a case of this directly, but I am going to test for Acute Transverse Myelitis. It’s a one-in-a-million condition.

“Let’s get an MRI on your spine, around the area where your sensation stops, and see what we can find.” (Here is another plus mark for Dr. Nick Mills: he didn’t ask me to “hop” off the mattress to go get the MRI. You notice things like that when you are paralyzed, powerless and presumably mute and invisible!)

It was nightfall on Sunday and the orderlies, who were no doubt vying for the cover of a Hospital Hotties Cal-

endar, came to get me. The “kids” transferred me to a wheelchair and we headed off. Suddenly they pushed open the exit doors and I was thrust into what can only be described as a Tim-Burton-meets-the-Sugar-PlumFairy experience.

For no apparent reason, the MRI machine was in a semitrailer in the farthest corner of the hospital parking lot.

The staff had chopped away a covering of ice—with the thickness of Lake Superior in January—to clear the path.

Snow drifts loomed on either side above us. The night air was crisp, the stars bright. I inhaled; something was different. Oh yeah: no urine-puke-alcohol-latex glove smell. I sucked in as much good air as I could. But before I could hyperventilate, the chair did a gentle glissade down the narrow path, gaining the momentum of an Olympic bobsled.

Dudes, I’ll pass on the ol’ Mel Brooks wheelchairdown-the-stairs-and-across-the-parking-lot-into-oncoming-traffic-schtick! “Somebody stop me, please!”

Land ‘o Goshen, you are sweeter than apricot jam on buttered cinnamon toast. Did I mention that my mouth is watering just pretending I am two decades within your age range?

“No, I can’t use my legs at all,” I told him. “I can hang on with my arms, though.”

“Okay,” he said. “Then here’s what I will do. Let me lean down to you and embrace you completely.”

And then the rest is kinda fuzzy, but it sorta went like this: “With my hand on the small of your back, let me pull you towards my chest.

Put your head on my shoulder, I’m strong, I’m trained, I’m ready.

I’ll do all the rest.

It will be safe, ma’am. All you have to do is hang on tight.

The MRI workers sequestered in the semi-truck opened a side door four feet above my head. With a wisp of a hand on a computerized remote they sent a flat, steel lift careening down toward street level. The orderlies caught up with me just before I was about to become roadkill (or parking lot kill, anyway). The heavy, metal, two-inch-thick platform slammed to earth, hurling ice chunks into my hair.

I was freaked out, which triggered a “private vacation to the Bahamas” (also known as a “hot flash”). Undaunted, the orderlies grabbed my chair and tipped it up and over the ledge—which, I should mention, had landed the width of a dragonfly wing’s from my toes.

Someone motioned a “thumbs up”. We ascended the four feet at the same rate that JELL-O congeals. Every wiggling, jiggling movement stung more than bare-hugging a cactus trimmed with fiberglass. And it was cold.

How cold was it? Ice cream could get freezer burn.

Add “wheelchairs on icy surfaces” to the list of things never to take rides in (along with: “ski patrol with toboggans”, “car with drunk friends”, and “ferris wheels after a jumbo hot dog mit sauerkraut with a cotton candy chaser”).

It was very crowded inside the trailer. There was one boy (and I do mean boy) behind my head and one facing me. On my right was the MRI table. “Can you move from the chair onto the table, ma’am?” I was asked.

And whoa. Aftershave smelling of a musty giant redwood forest ran up my nostrils just as cornflower blue eyes framed in the black eye lashes the length of butterfly wings batted near my cheek. Mercy me, I thought. If this guy leans any closer I’ll be in the cardiac unit.

Once I have you against my body, I am going pick you up and lay you down.

Is that all right?”

Dang, if those aren’t lyrics for a Country Western Song, I’ll eat my (4X Beaver Stetson) hat! “Is that all right?”

Nah, let’s go get a guy from the Grease-o-Rama trucker bar with peanut shell breath and a Grand Canyon butt crack. He can throw me fireman’s style over his shoulder and slam me onto that cold chunk of stainless steel…or we could do it your way.

“Yeah, that’s fine,” I said. I went for a Mona Lisa smile, desperately trying to keep my lips from snapping up like window shades into a monkey grin. He leaned toward me, smelling of musky pine, and all I could hear was the Disney princesses humming in three-part harmony: “Some Day My Prince Will Come”.

Mesmerized by the hardest six-pack since somebody left the Coors out in the snow, I was transported from my wheelchair to Nirvana and, eventually, to the MRI table.

“You’re okay, now. You’re safe and sound,” said my savior. “Okay! You can let go of my neck…now.” And quicker than you can say “let’s get married”, he disappeared.

I blinked and found myself staring into the bland face of a middle-aged nurse who was clearly counting the number of days she had to work before retirement. She droned instructions in a nasal whine. Think of Roz’s voice in “Monsters, Inc.”: “We have to roll you into a tube. You must stay very still. Is that clear?”

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If I could kick, squirm or as much as wiggle a toe hair, (i.e. not stay still), this MRI would be a moot point, would it not? In fact, it would be a mute point, since we wouldn’t be having this discussion.

That is, if anyone cared to, for a whimsical fancy, read the blankey-blankey-blankey (fill in your own blanks if are an adult or a minor who has already been corrupted) chart!

“We will be talking to you through an intercom,” the woman said. “If you feel yourself panic, just talk to us.”

Then the bed I was resting on was sucked backwards into the open tube, like the tongue of a giant, man-eating plant. “Seymour, I’m hungry!”

The first thing you realize inside one of these tubes is that you can hear the MRI folks give orders and ask if you are okay, but you can’t really hear them talk to each other. It’s like when you’re at the hairdresser and she’s cutting your hair and she says, “Oops!” and you know you’re about to get a much shorter hair cut than you had planned.

But in the MRI, I couldn’t hear bubkis. There was no banter. No “Holy moly, that’s not good,” or “We better get the doc on the phone pronto,” or “Come here. What do you figure that black spot is?” Not even a simple “I’ve done this for forty-seven years and I’ve never seen that before.” No, you’re just shot into a tube of utter silence. Until…

ZAP, ZIPPY, TING, TING, TING. An MRI machine can only be likened to a science-fiction spaceship transporter tube—granted, probably the garbage chute. The diameter of my tube was not much bigger than I was. Not a lot of room to, say, move a pinky—if I could.

I was 110 pounds, 5’2’ and there was barely enough room to pass through, pass gas or pass out. (Yes, I do understand that I am 110 pounds only on a planet from another solar system with different gravity.) The point is, this was a solo and lonely activity and, in these days of overpopulation, not much is ever that alone.

Yet, as soon as I was shut up in there I realized how happy the isolation made me—even though I couldn’t get out and the nurse was probably lying about taking me out if I panicked. The joy of being in my tube was that there was no one to interrupt my thoughts, hard as they were to string together while on drugs. I closed my eyes and could sense the scanner moving over my whole body. ZING, TIDDLY, ZING. PAT, PAT, ZONG, PONG. Ah, silence. Alone with my thoughts.

And just what were those altruistic, lofty thoughts? How to feed the world? End wars? Bring salvation to the 62

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lost? Cure cancer? Close.

Oh boy, oh boy, I thought. The next time it passes over me, I get to become a new person! Quick, who do I want to be? (This was a little like the opening to The Jetsons, in which Jane gets to pick a new hairstyle, or in Groundhog Day, except without character evolution.)

First pass, I could play the piano and sing. Next pass, I could add numbers in my head and do crossword puzzles.

BIDDY BING…Men desired me, women wanted to be me. CLICK CLACK…Suzy Cheerleader from Ridgewood High School apologized to me and asked for my key to success. (Did I mention my five bestsellers and my Grammy for my hit song?) Pong-Bang-a-Bong.

I passed on the bigger-boobs wish, just in case I happened to get stuck in the tube. ZING. No crow’s feet.

My smile lines stopped above my nostrils: just baby butt smoothness everywhere. ZIPPY ZAP, TIPPY TAP. No inner thighs.

“Are you all right in there?” came a call from outside.

Leave me alone. I am experimenting with Dr. Frankenschteen. Igore, push the nurse out into the cold and slam the dadgummit door!

“I’m fine,” I whispered. “It’s all good. Bye bye.”

“I’ve never seen anyone so relaxed for their first MRI,” came the voice again. “It’s hard to be in there all alone.”

I decided not to tell her how many people I can fit into my MRI cocoon. All my new selves were having so much fun I was disappointed when the procedure was over. Once back in the blue room with the two-dimensional mountain scene, I awaited Dr. Mills.

“Just as we suspected,” Dr. Mills said, “there is a line clear across your spinal column where the immune system attacked. To protect itself, your body reacted to the attack with swelling of the myelin sheath. Then the swelling bruised and pinched the nerves in your spine.

The myelin is close in DNA to a virus. This is why you can’t walk.”

So what you’re saying is that I have Rocky Stallone leading my immune cells on a mission to kill and destroy viruses. But also that he’s wearing glasses as thick as Mr. Magoo’s.

I can hear it now: “Yo, you guys see that?”

“Whadda ya think it is, Rocky?”

“Dunno. Maybe a virus. Hard to tell from here.”

“Let’s blast it. Can we, huh? Can we, Rocky?”

“Hey, whaz da worst dat can happen?”

KABOOM!

“Sweetie,” I told him over the phone, “did you get my message that I had a small problem on the ski hill and that the hospital kept me overnight for observation?”

“Well, you’re one tough cookie.” he said. “It’s probably just a sprain.”

“Oops.”

“Let’s clear outta here, guys.”

(I have since learned that the inflammation that ‘whacked’ my nerves could have been an inside job, a migraine of the spinal fluid. I am not sure this possibility is more comforting than the notion of a Stallone-led outside attack. It’s a bit of a toss up: surveillance cameras in the parking lot versus the employee locker room.

Is it the guy wearing the ski mask, or the guy selling the ski mask? Hey! Cheer up! Maybe it’s both: let’s not rule out a sting. Pun intended.)

The night nurse arrived with two more enemas. When it rains, it pours. “What are those for?” I asked. “I can’t feel anything, so I can’t push.”

“Oh, just because,” she said, doing a Texas two-step out the door (quick, quick, slow, slow, slow).

Just because? Just because you can charge thirty-five bucks a piece and you had extras in the supply room? I don’t care if I’ve had more opiates than a Marrakech hookah salesman, “Just because” is right up there with “because I said so.”

Lady, if I could kick, I’d so tae-bo your tailbone. But you know that, don’t you? I can tell the way you keep things just out of my reach.

As predicted, the enemas did nothing. I can see the report card on this one: Sally is barely passing GI Track 101. Her grades are slipping in Muscle Response. She is not working to her full capacity. None of her parts plays well with the other bits.

By the next morning I had enough brain cells to remember my husband would be expecting me in the church parking lot, along with the other skiers, the next day. I had erroneously trusted the first intern with whom I’d spoken to send my urgent message to my hubby. The fact that I had not heard from my spouse was, I’d assumed, because I didn’t have a working cell phone and because my room had been moved several times.

(Or, possibly, I had talked to him for hours but couldn’t quite recall it.)

I borrowed a cell phone to update my husband on my crisis and to alert him to the fact that I would be a smidge delayed. I wasn’t sure how to break it to him that his other-half was now his other one-quarter-or-less.

You know when you have sugar-coated something way past a dusting of confectioner’s sugar right over to rockcandy when people can’t pick up on your clues. It was time to fish—the “cut bait” window had closed.

“Okay,” I said. “Sit down. I am paralyzed from the waist down. I can only be moved if I have three medics with me at all times.”

“I’m on my way.”

“It will take you eight hours and they want to discharge me in four.”

“What can I do?”

“Call our doctor and see if he can admit me to our local hospital.” I didn’t think it wise to explain how dense the staff were at my present location.

As if on cue, Dr. Mills cleared his throat and entered from the hallway. “Your case is too complex for the doctors here,” he told me. “You need specific help.”

The doctors from the local staff all stood behind him, nodding. Hands folded. I suppressed a smirk. The scene looked like a kung fu movie scene in which men in robes and long braids all nod and agree with the head warlord. If they stood in any tighter of a formation I could’ve bowled them over with my bedpan.

“Okay,” I said. “How bad is it?”

“That depends.”

Oh, not good.

THE LESSON: “Ah, silence. Alone with my thoughts.”

As shallow as my thoughts were while I was on drugs and in the MRI tube, upon reflection I had to admit that I don’t spend much time with myself. I’m out of practice. This was a strange realization because I used to spend hours alone as a child. Whether eating wild blackberries or wading in a brook, I was often alone and experiencing the world. I loved it then, so I am going to try more of it now. I say, why not have a playdate with yourself, doing what you loved to do when you were little: fishing, skipping stones, coloring, or building stuff? scrambledleggs.net ABILITY 63

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1. Strong advocate for employing actors with disabilities, Daryl “Chill” ____ 6. Main character in “Quid Pro Quo” (goes with 27 across) 10. Chicken ___ king (2 words) 12. Nightmare tree?

14. Creator of the Angel Network of charities 17. Come together 18. Thanksgiving spud 19. E-mail subject line intro 20. Saturn or Mercury 21. Give hope and confidence to 24. Tree that is a symbol of stability 25. Have emotion 27. See 6 across 28. Doze 30. “The ___ and the Ecstasy” Charlton Heston film 31. “Arrested While Driving While Blind” singers ___ Top 32. Valerie Sobel formed this charitable Foundation after having to watch her son pass away from a terminal illness (3 words) 37. Celebrity who champions the cause of Vital Voices, ____ Field 38. Movement representing alternate spiritual and philosophical values (2 words) 42. Art degrees 44. Guitar master ___ Paul 45. Hospital for vets 48. It’s almost seen as a disability (2 words) 50. First bilateral above-the-knee amputee to complete the Ironman, ____ Garcia-Tolson 52. Friendly dog 54. Environmental watchdogs, for short 56. “Maggie May” singer, first name 57. Greyhound, e.g.

58. ____ Quixote 59. Animal trained to assist people with disabilities (2 words)

1. “Criminal Minds” supports MS Society, Shemar ____ 2. Old salt 3. Amusement sound 4. ___ Capitan 5. ER star played Dr Kerry Weaver with a disability that caused her to limp (2 words) 7. “I can ____ now, the rain it falls” Johnny Nash (2 words) 8. Montgomery locale 9. “Little People, Big world” matriarch whose charity supports kids, at-risk and disability groups (2 words) 11. Exercise machine 13. “Tracks of My Tears” singer, first name 15. Fountain for one 16. Trouble 22. Put a meal together 23. Freeing in a away 26. For example 27. “You Don’t Mess with Zoltan” actress who conquered DVT, Lainie _____ 29. Swimming locale 33. Ludacris’s sound 34. Rise like Amelia Earhart 35. Piece of history 36. “The Girl with the Dragon Tattoo” nation 39. Add-on 40. “By yesterday!”

41. Famous fruit picker 42. “The Hobbit” hero Baggins 43. Underwater boats 46. Tom and Katie’s baby 47. Jekyll’s alter ego 48. Not fitting in 49. Driver’s need 51. Wyatt Earp’s pal 53. Summer month, abbr.

55. Press guy answers on page 66 ABILITY 65

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