43 minute read
COLOSTOMANIA
Why Some Wheelchair Users Wish They’d Chosen a Colostomy Sooner
BY JENNY SMITH
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Mentioning a colostomy in an online forum is akin to yelling “Fire!” in a crowded space. Suddenly nearly everyone is mobilizing and has something to say. It makes sense, because managing a bowel program is one of the trickiest, most frustrating, and mentally consuming aspects of life with an SCI. Ever-lengthening routines, incontinence, hemorrhoids, and numerous other issues leave many wheelchair users looking for an alternative to suppositories, enemas, and stimulation.
Between the poop emojis and jokes, most comments fall in two very different camps: “It’s the best decision I’ve ever made,” and “I’d never wear a bag of crap on my belly.” When I started having issues with incontinence in 2008, I leaned towards the latter, probably because I never spoke with anyone who actually had a colostomy and took the naysayers’ comments at face value.
I ended up going a different route (see sidebar), but a part of me wishes I had taken the time to listen to my peers and better understand how something so initially unappealing could be so beloved by so many users.
Steve Harris hasn’t had to take any sick days from his job as a TV news director since getting a colostomy.
A COMPLICATED DECISION MADE EASY
Steve Harris, a T9-10 incomplete para, returned to work as a TV news director six months after his injury while still adjusting to his bowel program. In his first two years postinjury, he used every sick day to deal with bowel accidents that occurred at work.
Harris saw a gastrointestinal doctor, increased his fiber and switched to Enemeez suppositories. He finally asked about a colostomy, and his doctor referred him to a colorectal surgeon. “It was a hard decision because it’s a major life change, but ultimately it wasn’t too difficult to make because I was so frustrated with my existing bowel routine,” he says.
The surgical procedure for a colostomy involves bringing part of the colon through the abdominal wall and stitching it to the outside of the abdomen. An “end” colostomy uses the end of the colon and is permanent, while a “loop” colostomy opens a hole in the colon and attaches it to the abdomen; this procedure is typically reversible. Both procedures create a stoma where stool is eliminated into a bag, usually worn full time on the abdomen.
Barring complications, the surgery can usually be done laparoscopically, minimizing the incision and making for easier healing. Many SCI recipients reported minimal or no pain post-op. Harris wasn’t as lucky with his loop surgery. “I was in the hospital for about four days, then they sent me home with a home health nurse,” he says. “I had developed a wound where the skin around the edge of the stoma separated. They extended my home health, which was really helpful because I had a hard time finding products that would work for me.”
At that point, Harris started to doubt his decision. “After surgery, just looking at the bag, then having the problems with products, I didn’t have a lot of optimism,” he says. Surgeons say to expect five to eight weeks to heal as the stoma shrinks and your digestive system adjusts to its new reality. In six weeks, Harris was back at work. Once he found the right
wafers (attached to the abdomen to hold a bag) he could go through his day with confidence. He’s only had one major blowout, which he managed to clean up at the office. No need to take a sick day.
“I spend barely any time on it in the morning. When I change the wafer every four to five days, it only takes about 20 minutes. It frees me up to do everything that I want to do during the day,” he says. “It has worked out and been a really positive thing for me.”
INCREASED INDEPENDENCE
For Racheal Palmer, a C6 quadriplegic from Texas, a colostomy solved her growing problem with incontinence and increased her independence. For the first 14 years after her injury, Palmer relied on her mother to assist with her bowel program. “I’ve always been afraid that if my mom dies, who am I going to teach how to do digital stimulation?” she says.
On top of that, in 2013, she started having bowel accidents. “There was one year where I had diarrhea every single day,” she says. “I had an accident at least two or three days every week.” She modified her diet and eliminated anything that might trigger an accident. “I was terrified to eat. If I had a family function to go to, I’d plan ahead by not eating. I was so scared of having an accident. And I just wanted to have a beer. One beer without fear.”
Palmer says her positive experience with her own urostomy eventually helped ease concerns about a colostomy. “It got to the point where it was an easy decision,” she says. “I was like, I’m over this.”
Her surgery went smoothly, but her recovery was complicated by a surgeon who refused her pleas for any sort of pain medication. While her bowels worked better almost instantly, Palmer struggled with dysreflexia and discomfort for a few weeks.
Even with the lack of hand function, Palmer was changing her bags days after her surgery. She is now completely independent with her bowel program. “I don’t have to worry now about going to the bathroom. I can take care of myself.”
Since the colostomy, Palmer can eat or drink a beer or glass of wine without fear. “Not once have I regretted it. This summer, I get to eat ice cream!”
Racheal Palmer, a C6 quad, is now completely independent with her bowel program. “Not once have I regretted it.”
OSTOMY VOCABULARY
COLOSTOMY: A colostomy is placed in the large intestine, and output is typically formed or solid.
ILEOSTOMY: An ileostomy is placed in the small bowel. Output is liquidy.
WAFER OR FLANGE: The adhesive portion of the colostomy appliance. Wafers may be pre-cut or cut-to-fit for the size of the stoma.
ONE-PIECE SYSTEM: The wafer and bag/pouch are one piece. The entire appliance is removed when changing out a bag. May not be the best option for people with sensitive skin or limited dexterity.
TWO-PIECE SYSTEM: The wafer and bag are separate. The wafer can stay on multiple days, while the bag can be disposed of or reused.
STOMA: The surgically created opening from the bowel to the abdomen.
PROS AND CONS
Colostomies can be a boon for your independence even if you can’t manage them with your own hands. Unlike Palmer and Harris, Shawna Buchannan didn’t choose to get a colostomy. It was her doctor who insisted on the procedure to prevent infection after flap surgery for a stage IV pressure wound.
Despite 15 years of doing a two-hour bowel routine, Buchannan, a C5 quad, had been adamantly opposed to a colostomy. “My only regret now is that I didn’t get it sooner,” she says. She needs help changing the bags but no longer has to plan her life around going to the bathroom. The surgery has given her more time and made caregiving easier. “My boyfriend learned how to change the bag. It’s a lot better than someone putting their finger up your butt,” she says with a laugh.
Even though time savings, increased independence and easier caregiving are common outcomes, it’s important to remember that colostomies aren’t all sparkles and sunshine, and they aren’t guaranteed to solve all your problems. Physically and emotionally adjusting to having a stoma can be difficult.
For Harris, who has been married for 28 years, self-image wasn’t as much of a concern as it is with many. “It wasn’t a big deal, and, honestly, I didn’t have the best body image anyway.” Before her colostomy, Palmer had been so fearful of having a humiliating accident that she didn’t date for 10 years. The increased confidence that she would be continent more than made up for any body image concerns post-surgery.
“The colostomy was a game-changer when it came to relationships. It was the first time I was in a relationship where I allowed myself to actually fall in love with someone. I couldn’t do that before,” she says. “My sex life improved because I didn’t fear the humiliation of having an accident.”
As she moved from her 20s into her 30s, she became more comfortable with her body the way it is. “I’ve gotten to the point where if a colostomy bothers a man, then that’s fine. I’ll find someone who can accept me as I am.”
What about the odor? While there is no way to escape the fact that poop smells, today’s pouches do a good job of concealing the smell, and there are a number of products that help reduce the odors that escape when changing bags. “I don’t have an odor that I have to deal with except for when I’m changing the bag,” says
Harris. “Generally, when everything’s working like it’s supposed to, I don’t have any smell to worry about.” One thing often not mentioned when discussing ostomies is the sound. Any gas you have will now pass through the stoma. The result can be unsettling and surprisingly loud, but most people learn to live with it. James Lee, a C5 quad
“My only regret now is that I didn’t get it sooner,” says Shawna Buchannan.
IRRIGATING A COLOSTOMY
Irrigation can be a good option for people looking for more control of their bowel schedule. Flushing the bowels with water via the stoma mimics an enema and evacuates them. With irrigation, little to no output may occur for 24 hours. Some people may even be able to “cap off” their colostomy, using a small cap instead of a bag. Kimberly Thomas chooses to irrigate her colostomy so she can completely clear out her system before starting the day. It also keeps her bowel movements on a regular schedule, giving her more control. To irrigate, Thomas, a T8 paraplegic, uses an irrigation kit, which includes a large bag for water, tubing, and a sleeve—or large bag—into which the waste is drained. She uses 600 to 1,000 milliliters of warm water and, in a trick she learned from an ostomy nurse, adds 25 cubic centimeters of unscented castile soap to help her colon contract for a better bowel movement.
She hangs the bag of warm water over her head, removes her regular closed-end pouch from the flange on her body and attaches the irrigation sleeve, which allows access to the stoma. She then places the cone tip of the tubing into the stoma and opens the clamp to allow the water to flow. It takes about five minutes for the water to go into the colon. It takes 30 to 45 minutes for the water and waste to drain from the colon.
from Oregon, accepted the smells and sounds as small drawbacks compared to the relief his colostomy brought after years of bowel issues. “From day one after my injury, I had bad motility with my gut,” he says. “I kept getting backed up, and it just started hurting.” He tried diets, cleanses, juices — anything and everything to relieve his constipation and ease his discomfort. “I committed to everything I thought might help, but nothing did,” he says.
His gut issues landed him in the ER multiple times and
came to dominate his daily life. In 2018, after talking with his doctors and many in the SCI community, he got a loop colostomy.
“I instantly loved it,” he says. The colostomy made his days easier and provided relief, but after about two years he started having issues again. His bowels simply weren’t moving enough. More hospital visits and more discomfort forced Lee to consider his options. After much deliberation and consultation, he opted for surgery to remove his large intestine and get an ileostomy.
In the procedure his surgeon connected his small intestine to the existing stoma and removed the feces-filled bowel. Though the ileostomy presents a number of new management issues and possible complications, it’s hoped that connecting higher up in the digestive tract will improve motility. Lee isn’t sure what to expect, but he is optimistic. “The biggest fear you have is the fear of making the wrong move,” he says. “I still feel like I have a huge question mark. I know I did something that needed to be done, but I don’t know if it’ll make me feel better.”
Harris and Palmer summed up the consensus.
“A colostomy isn’t for everybody,” says Harris. “It’s a big surgery and commitment. But if you’re having problems with the bowel routine, and you can’t seem to get it under control, it’s a perfectly legitimate option.”
“The only thing I would change is doing it sooner,” says Palmer. “Now, it seems silly that I waited this long. Life could have been a lot easier. This summer I’m planning on going to California to visit friends. I’m not scared to travel! This has opened up my life.”
MY STORY
For the first 20 years of my injury, my bowel program worked rather well. As a quad, I had to have help, but it was manageable. Around 2008, I started having accidents. I’d have to leave wherever I was — work, volunteering, sports — and get cleaned up. I eliminated everything I could from my diet. I saw five gastroenterologists, none of whom had answers or solutions. I learned about continent ileostomies from another person with an SCI. The two most common procedures are the Kock Pouch and BCIR (Barnett Continent Intestinal Reservoir). Both take bowel tissue to form a pouch and stoma, and you empty waste from the internal pouch into the toilet using a catheter. The surgery and mechanics are similar to those of a Mitrofanoff procedure, which allows you to empty your bladder with a catheter inserted into a stoma. However, with a continent ostomy, the risks are greater than a Mitrofanoff and involve more possible complications. The biggest concern is the lack of knowledgeable surgeons if something goes wrong. I shared the information about the continent ostomy with my urologist, rehab doctor, primary care and two gastrointestinal doctors. The colorectal surgeon said he wouldn’t recommend it due to the high risk of complications, but I was desperate and proceeded with the surgery. One surgery tuned into five surgeries, fifteen weeks in the hospital, and two weeks of rehab to regain my strength. I don’t regret having the surgery. I’m now completely independent with my bowel program. However, I continue to experience complications such as pouchitis, fistulas, sodium and potassium deficiency, and dehydration. I wish I had taken the time to consider a colostomy. Read more about The Pros and Cons of a Continent Ostomy with SCI at jennysmithrollson.com/the-prosand-cons-of-a-continent-ostomy-with-sci.
— Jenny Smith
BY IAN RUDER ILLUSTRATIONS BY OWEN SWIFTER
No one can tell you what lies ahead when you roll out of rehab. You are thrust into life with SCI with minimal instructions, and every decision you make impacts your future in ways you can barely understand. It all seems overwhelming. Over 33 years of covering life with SCI, we at New Mobility have come to believe that the best strategy for navigating the journey is to listen to others who have rolled before us. To that end, we reached out to a diverse group of wheelchair users at different phases of their personal journeys so they can share what they’ve been through, what they’ve learned and what they see ahead.
PHASE TWO
PHASE ONE
Rebecca Koltun
Age: 22 Injury: C1-2 Years with SCI: 1.5 Artist, TikTok Creator
Melissa McRoy
Age: 51 Injury: T2, L4-5, S1 Years with SCI: 8 Mom, Student
PHASE THREE
Jemal Mfundshi
Age: 53 Injury Level: C6-7 Years with SCI: 28 Mobility Equipment Rep Motorcycle Racer
Chris Benson
Age: 62 Injury Level: C6-7 Years with SCI: 46 Photographer Entrepreneur Grandmother of Twins
1WTF Happens Now? Adjust. Adapt. Accept.
After almost nine months in hospitals and rehab following my injury, I was nervous about leaving. I’d grown used to being around trained staff and having easy access to the medications and equipment I needed. What would I do if I had an emergency and all these things weren’t readily available? I was also worried I was going to be really bored without the hours of therapy I’d grown used to. On top of all that, the home I grew up in was still being remodeled, so I’d be temporarily moving into an assisted living facility.
I made it through a six-week stay in assisted living and returned to a freshly remodeled home courtesy of the NBC show George to the Rescue. There was a ramp, elevator, and widened hallways and doors I could navigate independently using my sip-and-puff head array. They even redid the deck and made a sweet outdoor patio space with a firepit where I can hang out.
My friends and community have been incredible. My parents and I launched a fundraising page and raised a ton of money. There have been so many events, I can’t even count them: a 5K, softball games, a comedy show, even people just selling stuff. On top of that, a lot of people, including some I don’t even know, have stepped up and offered to help in any way possible. Honestly, the outpouring of support really surprised me.
Even with all that support, managing my caregiving situation and finding the full-time assistance I need has been stressful. In part because of the pandemic and the nursing shortage, at one point I had almost no outside caregivers. My parents are amazing and have sacrificed a lot for me, but I feel guilty relying on them for stuff like night care. I hate having to call them because my neck hurts or I need some water.
Thankfully, I’ve found more consistent help. I posted the jobs everywhere and my parents both got the word out wherever they could. The situation now is still complicated — with some caregivers coming from an agency via Medicaid and some private aides covering shifts the agency can’t cover — but it’s way better. Seeing my parents able to live their lives and not be responsible for so much of my care makes me happy. It took some time, but after 16 months, I feel I have a pretty good handle on my health and how to manage it.
I was wrapping up my senior year of college and in the midst of interviewing for medical school when I was injured. I still want to go back to school and maybe get a master’s degree, but I definitely don’t want to be a doctor
Rebecca Koltun
Plainview, New York C1-2 for 1.5 years, Age 22 Rehab: Four and a half months at Spaulding; four months at Glen Cove Center for Nursing and Rehabilitation
TIMELINE
March 2021 Paralyzed at age 21 December 2021 Finished rehab, moved to assisted living February 2022 Returned home
anymore. I don’t want to treat patients if I can’t use my hands. More than that though, I’m just not interested in being a doctor.
I still scramble to find things to keep me busy, but right now I’m really enjoying making art and TikTok videos. I was never that into art before my injury — I was more into sports and athletics — but I started mouth painting during rehab and have grown to enjoy it. I’ve sold a few paintings and I really want to start selling more. There seems to be a demand, so I’m looking at opening my own Etsy shop.
I got into TikTok because it was fun, but I’ve gained over 42,000 followers, and I’m making a little money now. My videos are very much me and embrace my dark humor. Sometimes my friends help me edit my videos, but I’m able to do it independently using my GlassOuse head mouse. I love seeing people’s reactions to what I create. It’s crazy to think 15.5 million people viewed something I made.
Beyond art and TikTok, I’m finally getting back to doing lots of the things I enjoy. I’ve got an adapted Chrysler Pacifica that makes going places easy. I’ve become a regular at the beach. I saw The Kite Runner on Broadway, and I just snagged front-row seats at a OneRepublic concert. Not only were the seats unbelievable, the lead singer pointed at me twice.
I’ve always been an optimist and a positive person, and being paralyzed didn’t change that. In a relatively short period of time, I’ve weaned myself off the ventilator (I use a diaphragmatic pacer 24/7), learned to manage my caregiving, found new hobbies and generally healed from my injury.
Melissa McRoy
T2, L4-5, S1 for 8 years; Age 51
When I got out of rehab in 2015, I was lost. A few weeks earlier, I didn’t even know what Guillain-Barré syndrome was. Now I was paralyzed and headed home in a wheelchair that didn’t fit me after a shortened two-week stay in rehab at TIRR. I had no clue how to do most of my care, and I’d only been out in public once in my chair. I was a single mom, and with no family or support system in the area, I had to get home to my teenage daughter and two young sons. I had no choice.
My nerve pain was unbearable — a single touch could make me cry. I still hadn’t gotten any of my strength back, and I was an emotional wreck. On top of that, my house lacked any adaptions, forcing me to rely heavily on caregivers to access the bathroom and get in the front door. Home therapy visits helped, but most of my learning and improving was trial and error. I watched a lot of videos and learned from people sharing online. Trying to regain control of my body was physically tough, but watching how it impacted my two younger kids and trying to make sure they were OK was even harder. I tried to be as independent as possible, but inevitably ended up asking them for help. One time, during the period I was teaching my youngest how to use the restroom by himself, I asked him to grab me something so I could use the bathroom. He looked at me, puzzled. “Mommy, you’re a big girl, you shouldn’t do that.” It kind of crushed me, but eventually I had to laugh because I could see he was just trying to process my new disability.
Jemal Mfundshi
C6-7 incomplete for 28 years, Age 53
I left rehab focused on regaining my independence and getting back to work. Despite my C6-7 injury, at that time I functioned more like a C5, with no triceps and limited wrists. I had a tenodesis splint, a dig (dil) stick, a sliding board and a loaner chair. I could dress myself in sweats and a T-shirt, transfer, and I didn’t need too much help — as long as it was a good day.
I moved in with a woman I’d been seeing for about a month before my injury. She lived up a flight of stairs in an apartment. I had to be carried up to get in, but once inside I could get to all the important places. Alone at home, I missed the structure of rehab and being around other people in chairs.
I’d started attending quad rugby practices during rehab and made a point of going every week. I became great friends with another rugby player who happened to live a half-mile away from me. He’d drive his stock Dodge Grand Caravan to my place, and I’d transfer through the sliding door onto the floor (he’d had the seats removed) and we would drive to a local bike trail and push. Every time, we got a little stronger. When we started, I could barely push a half-mile. At the end of the first year, we completed the Portland Marathon together in racing chairs.
I knew getting physically stronger would make me more independent, but I hadn’t anticipated how it would help me emotionally. Learning to transfer from the floor to my chair gave me a huge psychological boost and the confidence to get out and do things without having to worry about what would happen if I fell out of my chair.
Around a year after my injury, I’d regained decent triceps and some hand function. I figured this is what I have to work with. I focused on continuing to get stronger and building my endurance so I could go back to work full time.
Chris Benson
C6-7 for 46 years, Age 62
By the time I left rehab at Craig Hospital in 1977, I already had a fierce desire to live independently. I adjusted to my accident and my new life in a chair.
I returned home to finish high school, then moved back to Denver for the summer to live with my Craig roommate, Sharon. She had an amazing energy and attitude about life, and that helped me get a good start in my wheelchair journey. We shared an apartment and worked out at Craig but spent more time having fun. We transferred into her two-door Monte Carlo and took in all the scenery, tourist traps, fairs and concerts we could.
From early on, I promised myself I wouldn’t miss out on any awesome experiences because of my disability. A good example is when Sharon and I saw the Grateful Dead at Red Rocks. Back then the only accessible seating was all the way in the back — miles above the stage. We were not having any part of that. We asked some big guys if they’d Great rehab helped help us get down to the stage, send Benson on an and they agreed. Those guys adventurous path. turned out to be the Isley Brothers. They gave us tickets to their upcoming show, but more importantly we ended up in the front row for a Grateful Dead show. The following year I moved to Tucson to start a new chapter in my life. I met a new crew of friends, lived on a ranch with 12 cabins on five acres. No one really worked too hard. We were young and just wanted to make art.
2Back in the Driver’s Seat Exploring Options for #WheelchairLife
After a year or so of struggling to get back to living my life the way I wanted, things started to improve. I started attending the Metropolitan Multi-Purpose Center, and when I saw a flyer for their adaptive offerings one day, decided to give them a try. The center had a gym, pool and a bunch of different adaptive classes and teams, but it was the community that really helped me. When I first went, I didn’t know anyone — not only in the disability community, but in Houston. I’d only lived here a few years and didn’t have family around.
Some of my new friends encouraged me to try wheelchair basketball. I’m a girly-girl, so I opted for tennis. I went to a weekend tennis camp and actually liked it. On top of the exercise, I knew getting out and socializing was good for me mentally and emotionally, so I joined the adaptive tennis team at the University of Houston.
Now I attend Tabata Tuesday workout classes at the MultiPurpose Center every week in addition to working out on my own and attending other social events there. Through the center, I got involved with two great support groups, and the friends I’ve made there have been key to regaining my independence. One took me out in her car to teach me how to drive with hand controls. I still don’t have a vehicle I can use independently, but I’m confident in my abilities.
Eight years after acquiring my disability, I’ve regained a lot of the strength I lost and some of the function. I’ve recovered full use of my fingers and hands. My core is strong, and I’ve even gotten some ankle function back. I’m a lot more independent around the house, but still need assistance regularly as my strength comes and goes. My kids are old enough now that they can help me and get paid by the state, but for a while, managing caregivers was a nightmare. One time, my son caught an attendant swapping out my two-ply toilet paper for one-ply rolls she got from a gas station. I told her I would have just given her a roll if she had asked!
My biggest physical setback came in 2019 when I went into anaphylactic shock from a bad interaction with one of my medications. I blacked out and ended up spending a week and a half in the hospital. That led to dysphagia, a swallowing disorder that made it much harder for me to eat. For a while I pureed everything, and to this day have to be careful about what and how I eat. I’m a big juicer now and enjoy a lot of soups.
As I became more confident and figured out the day-to-day stuff, I started working on other goals like finding work. I took some classes at the local community college in 2017 and 2018, but none of the job opportunities worked out.
I’ve always loved fashion and modeling and wanted to launch my own fashion business but lost my self-confidence after I was paralyzed. I couldn’t put pants on by myself, so I wore nothing but dresses for a year. My feet were too swollen to wear any of my fancy shoes, and on top of that I had foot drop.
I still remember my first trip to the mall when I started to get my fashion confidence back. I dressed up like I was going on a date — a real head-turner! Some stared at me. I went right up to them and said hello. People tell me I have a great spirit and contagious smile, and if I can use those to disarm some people, I’m all for it.
As I got my sexy back, I returned to the idea of launching my own fashion company and started working out what I needed to do to make it happen. I knew I’d need some marketing skills, so I enrolled in a marketing class at Houston Community College.
Melissa McRoy
Houston, Texas T2, L4-5, S1 for 8 years, Age 51 Rehab: Two weeks at TIRR Memorial Hermann
TIMELINE
2014 Guillain-Barré syndrome at 43 2015 Rehab at TIRR 2016 Peer support, adaptive sports 2017 Took classes 2019 Anaphylactic shock 2021 Attended community college and joined University of Houston adaptive tennis team 2022 Developing clothing brand
Around the same time, I started competing with the University of Houston adaptive tennis team. I go to practice every Thursday, and earlier this year I won my first tournament. I had never imagined that was even possible. I was even prouder to see my kids’ reaction and pride.
It’s been an up-and-down eight years, but I’m happy where I am and excited for the future. I wish I had started my clothing line a long time ago, but I feel closer to where I want to be than I have been in a while. I’ve taken the keys to my life back! I’m bold now. I want to do my thing. I notice now that people latch onto me in the support groups that I’m in, and I want to encourage them to realize they can do whatever they want.
Jemal Mfundshi
C6-7 incomplete for 28 years, Age 53
About 14 months after my injury, I returned to work. Voc rehab helped me modify my car so I could drive, and the semiconductor manufacturing company I’d worked for came through on their promise that there would be a job for me when I was ready. I wasn’t able to physically do the job I had before, so I went into human resources. I was just happy to have a job and not be dependent on SSI.
Returning to work wasn’t easy. I’d worked with those people for five years before my injury, and they all knew me as a fit 24-year-old. Now I used a manual chair and had a quad gut. I was very self-conscious. Additionally, everything I had known was different now — doors were heavy, things were out of reach, the bathroom was tricky — it was a challenge.
Thankfully, everyone was super supportive and over time it got easier. The conversations shifted from all being about the wheelchair to normal, everyday topics. People realized I was still the same guy.
Outside of work, things kept getting busier. I married the woman I had moved in with. We lived together for five years before divorcing. I don’t really attribute the split to anything wheelchair-related, more just lack of compatibility.
I kept playing rugby and building my strength and stamina. In 2000, my rugby friend and I completed the Midnight Sun Ultra Challenge in Alaska — 267 miles over six days.
It was the most physically demanding thing I’d ever accomplished, and while it pretty much broke me of ever wanting to do wheelchair racing, it also showed me I could do anything. Around the same time, I quit my job and started working for a local mobility dealer owned by a paraplegic friend. I’d pushed my limits, seen what was possible and was ready for something new.
“Over time it got easier,” says Mfundshi.
C6-7 for 46 years, Age 62
My 20s consisted of school, travel and photography. Life seemed easy and carefree.
One of my friends gave me a 35 mm camera for my birthday and I fell hard. It was all I thought about and all I wanted to do. I enrolled in community college to learn the technical bits and lived in the darkroom. I started with makeshift studios and a lone 35 mm camera. As a wheelchair user, I knew I would never get hired as a photographer’s assistant, so I had to work twice as hard. I couldn't get a bank to believe in me. Instead I focused on finding mentors I could follow around. I was constantly learning and made lots of mistakes, but I became established and worked all the time.
I built my portfolio by convincing boutique owners to let me shoot their clothes and accessories at scenic resorts, old adobe towns and the docks and beaches in Mexico. I loved organizing these events. I took
all of it very seriously and yet was one of the best and funnest times in my life. Ten years after my injury I broke my neck for the second time. I was getting out of a car with my dog’s leash around my wrist. She bolted and took me with her. I fell right on my neck and broke it at the same spot. I had fusion surgery and a halo The Safe, Practical and Convenient way to travel wherever and whenever you want. No more worries about having accessible facilities. Different models to meet specific needs! Simple to assemble; no tools required. Safe and easy to use. Seat and footrest heights are adjustable. Casters have “total-lock” Lightweight and durable, quality aircraft-grade Compact, convenient, and Won’t Rust or corrode; for four months, then healed up and got back to life as usual. I went back to school to make myself more marketable and eventually moved back to Denver in search of opportunity. That opportunity came in the form of a chance to shoot for the disability resource book Spinal Network (from which New Mobility was developed). After years of shooting models, I discovered a new love for focusing on real people and disability. The next thing I knew I was on a plane for the West Coast to photograph people for the book. In her 20s, Benson lived for photography. “GO-ANYWHERE” Chairs For Home AND On-The-Road VA contract V797D-30180
GO-ANYWHERE Chairs
“When Ya Gotta Go, We Go With Ya!” www.GoesAnywhere.com Different models to meet specific needs! Simple to assemble; no tools required. Safe and easy to use. Seat and footrest heights are adjustable. Casters have “total-lock” brakes. Lightweight and durable, quality aircraft-grade aluminum. Compact, convenient, and PORTABLE! Won’t Rust or corrode; easy to clean. Virtually maintenancefree. Cushions are available in (3) colors and remove easily for cleaning. Optional accessories include: wheeled custom travel bag, positioning belts, slide-out commode tray, 2-way adjustable headrest, and upgraded cushions! | SEPTEMBER/OCTOBER 2022 • Safe, Practical, Convenient, Portable • Won’t rust, easy to clean. • Simple to assemble; no tools required. • Numerous optional accessories Sales@GoesAnywhere.com | 800-359-4021 31
“GO-ANYWHERE” Chairs
Different models to meet specific needs!
www.goesanywhere.com Sales@goesanywhere.com 800-359-4021 For home AND on-the-road; When ya Gotta Go, We Go With Ya!”
www.goesanywhere.com Sales@goesanywhere.com 800-359-4021 For home AND on-the-road; When ya Gotta Go, We Go With Ya!” Come See Our New Ultralight “Sport” Model!
3Living Life on Our Terms Joy and Hardship: Adulting Does Not Discriminate
Coming off my divorce, I wasn’t looking for a new relationship, but through my peer mentoring at the local rehab hospital, I met a new quad who had also just gone through a divorce. We talked about everything, including our mutual struggles with self-image as quads, and we became close friends. We ended up moving in together, and 10 years later, marrying.
One of my other passions had been racing bikes. After getting injured in a racing accident, I didn’t think I’d ever again feel the way I did when I was racing. But my new boss at the mobility dealership loved racing cars and introduced me to autocross, timed racing on a set track. He had built his own custom hand controls for clutch and shift and had more dexterity than I did, but he got me racing stock cars with an automatic transmission. That really rekindled my passion for speed.
I’ve owned and raced in a ton of cool cars and currently roll in a C5 Corvette. Eventually, I started thinking about what it would take to get back on a motorcycle. I’d gotten more hand function and upper body strength, but I still didn’t have enough trunk or tricep strength. But when I saw a video of a para on a motorbike, I figured if he can do it, so can I.
I bought an old bike, then I fabricated retractable landing gear and put on a push-button shifting system. I took it to the same track where I had my accident and rode for the first time in 19 years. It was the scariest thing I had done since being in a chair, but also one of the coolest. Being able to overcome the fear while feeling the thrill of being on a fast sport bike again was one of those paramount moments in life.
Racing also helped fill the gap left when an unfortunate rugby accident brought an early end to my time playing. An illegal hit resulted in back damage, two surgeries and severe neuro pain I deal with to this day. Outside of that, I’ve been pretty fortunate when it comes to health. I haven’t had any pressure sores and just a few urinary tract infections here and there.
Accepting the way I look has always been a struggle. I still hate my posture, my quad gut and my skinny legs, but over time I’ve learned that appearance doesn’t matter that much and I’ve adapted. I’ve also learned to find silver linings, like my skinny legs making it easier to transfer.
Keeping things in perspective is key. In my job as a mobility dealer, I see a lot of people who’ve given up or let themselves go. I try not to judge, because I know how hard and complicated life can be, but I do make a point of reminding myself to keep working my ass off and keep pushing.
That’s the message I’ve always tried to instill when I’m mentoring people with new injuries or anyone in the community. Every once in a while I run into people I mentored years ago and it’s so rewarding to see how far they’ve come and the people they’ve become.
After almost a decade of living in apartments together, my
Portland, Oregon C6-7 incomplete for 28 years, Age 53 Rehab: Two months at Legacy Rehabilitation Institution of Oregon
TIMELINE
1994 Paralyzed at age 24 1995 Returned to work 1999 Started job with mobility dealer 2000 Completed Sadler’s Midnight Sun Ultra Challenge in Alaska 2001 Back injury in quad rugby 2009 Bought a house 2011 Married longtime partner 2013 Rode a motorcycle 2022 Repping Action Trackchair
wife and I bought a house in 2009. It didn’t need too much work to accommodate both of us, but we fixed up the bathroom and ripped out some carpet. Our house is our own little secluded cave with our three cats.
As I head into my 28th year in a chair, my main focus is maintaining my health. Every day I see other chair users with different medical issues, and my family has issues of its own. After trying some different diets, I settled on a high-protein diet and at 53 I’m in better shape than I have been in the past 15 years. A few years ago, I was sure I was going to need rotator cuff surgery and that scared the shit out of me. How could I take care of myself — much less help my wife — with one arm? I tried a low-carb diet and miraculously, within two weeks my joint pain was gone. I never tell people that what works for me will work for them, but I do say you need to figure out what works for you. It’s about working smarter, not harder. I’ve worked hard to accept that my life is the way it is and not let the little things stress me out.
Chris Benson
C6-7 for 46 years, Age 62
Eventually I moved home to South Dakota to be closer to family and open a photography studio. After years of being a little fish in a big pond, I was ready to try being a big fish in a little pond. I renovated an old auto shop and started Chris Benson Photography. Finally I was making serious money. It felt great. I bought more equipment, hired an assistant and expanded my marketing. I channeled my love for dogs into fundraisers for the Humane Society. In 22 years, I helped raise over $50,000 photographing families with their pets.
Everything changed in 2002 when I adopted a daughter. She had stomped into my studio a year earlier as one of many foster kids who came for professional photos to show prospective parents. I knew at that moment I wanted to adopt her. After asking a caseworker what to do, I completed a 10-week class and had a home inspection. Being a single quad didn’t seem to matter to them.
But, honestly, nothing really could gave prepared me for what was ahead. Everything moved so fast, and two months later she was living in my home. I was a foster parent for a year before I adopted her. They told me she had a diagnosis called Reactive Attachment Disorder, or RAD, a condition where children don’t form healthy emotional bonds with their caregivers, often because of abuse or neglect at an early age. A little shell-shocked, I vowed to help this little person who’d had every adult fail her. Being a single mother is difficult, but being a quad single mother adds a whole other dimension. Managing my business and taking care of my daughter proved too much, so after 14 years I closed my photo studio to spend more time with her. It was a rough ride. Life was very difficult for us, but we made it through.
Around the same time, in my late 40s, I decided to try online dating. I had always been a little unsure of myself in the dating department. I was aware of my insecurity back when I lived with Sharon, who always had guys around, but I never would have guessed it would follow me throughout life. I’ve had several relationships and a few serious ones, but had never put myself totally out there.
I posted a picture of me in my chair and was very open and honest in my dating profile — I didn’t want there to be any surprises. I wrote that I used to think I wanted a guy who made me feel like I didn’t have a disability, but really I wanted one who makes me feel like it’s OK to have a disability. I had quite a few responses and many dates. It was fun, but nothing long term came out of it.
4Keeping it Together Healing as a Way of Life
Chris Benson
Rapid City, South Dakota C6-7 for 46 years, Age 62 Rehab: Four months at Craig Hospital
TIMELINE
1977 Paralyzed diving at 16 1978 Graduated from high school 1979 Attended college 1980 Moved to Tucson, lived on a ranch 1987 Broke neck again 1990 Returned to school 1994 Pursued photography in Denver 1996 Moved to South Dakota 1997 Started CB Photography 2002 Adopted foster daughter 2010 Closed CB Photography 2015 Opened a used clothing store 2016 Tore rotator cuff 2020 Ileostomy, reversal, pressure sores, broken femur, amputated leg 2021 Started ChrisCooks
For as long as I can remember, I’ve derived a big part of my self-worth from being busy. That started to change when I tore my rotator cuff in 2016. The surgery and recovery slowed me down physically and mentally.
Needing assistance with everything drove home how central my independence — and living independently — is to my identity. I had grown so used to filling every minute of every day, that it was difficult to find a new healthy balance. I had to learn to stop pressuring myself and realize I don’t need to prove anything to anyone, or put myself out of my comfort zone to feel like I’m thriving. It’s OK that instead of going out, I’d rather garden and spend time with my dogs. My family and close friends are what matter most to me, and while I still have a passion for photography, it doesn’t define me.
All of this has been tested over the last few years as I’ve endured an unprecedented series of physical setbacks. More than 40 years of a slow-moving gut and lengthy bowel programs at last took their toll when I underwent emergency surgery on my small intestines in 2019. I woke up with an ileostomy, a 10-inch incision and no belly button. Months later, what was supposed to be a five-day hospital stay for reversal surgery turned into a six-week hospital ordeal. I got a feeding tube because my body refused to accept food. I also developed pressure sores that took months to heal.
When I finally recovered from pressure sores, I promptly fell while transferring and broke my femur. I tried every way to heal the bone, but years of sitting had made it fragile. Meanwhile a bad infection was stirring. Less than a year after the intestinal surgery, I had my left leg amputated.
That was the lowest point of my life. I was in a dark place, waiting for the next thing to go wrong. I felt defeated and thought my body was done. I was tired, and worried that my time on wheels had caught up to me. Taking care of this body felt like a full-time job. I avoided going out at all costs.
But my time as a wheelchair user has shown me a funny thing about a strong mind: Given time, it can heal. I started feeling stronger, and eventually everything healed. My doctor suggested ketamine treatments to help my anxiety. I had a 45-minute session every week for five months. I’m still not sure if it helped,
See Benson’s work at cbtalent-photography.com.
but they were nice trips to la-la land. I am still battling anxiety and probably always will to some degree, but I began to get my motivation and creativity back.
Going through this has forced me to reconsider my perspective on inspiration. I have always been confused about that word. I didn’t know I would ever need inspiration: I was the one to be doing the inspiring. It’s only in these later years that I’ve searched for it to help me through tough times. Now I find inspiration all around me.
I’ve reestablished a healthy life balance. When I was in the hospital and not able to eat, I watched all the cooking shows. Something inspired me to launch my own home chef biz. I started ChrisCooks in 2021 and now I plan meals, shop, prepare and deliver food to several clients weekly. I get great satisfaction in people enjoying what I create, same as making pictures.
I still love photography and continue to shoot pictures, and to top it all off, I’m a grandma. It’s the best! My daughter has grown to be an amazing person and mother. I couldn’t be prouder. I feel good — my body and soul feel more connected. I’ve climbed out of a deep hole and now am moving forward on my terms.
Setbacks seem to be a part of my life, the hardest part. Now I am getting major work done on my teeth. All the years of taking meds that kept my mouth nice and dry, and opening tops with my teeth (not to mention serious grinding), have ruined my mouth.
When people ask how I get through everything, my response is the same: What is my choice? To me there is no choice — you just move forward.
