When you multiply a number by itself, the result is “squared.” So what happens when you multiply an existing disability with an additional illness or injury? Well, it’s not a simple equation — and often there are exponential results.
“It scares the hell out of me! I’ve spent 48 years in a wheelchair, but dealing with ongoing severe cellulitis in my legs these last 14 months has compounded my disability,” says Tim Gilmer, 68. “It’s a lot worse than I imagined it would be.”
Gilmer, from Portland, Ore., sustained a T11 spinal cord injury in the summer of 1965. Eventually surviving the small plane crash that killed the pilot, his friend, and left him paralyzed, gave way to despair. “I had a tough time the first five years. I wanted to deny the disability. I gradually sank into an angry, bitter state of mind. Wherever I looked, I saw a world that was not made for me, and I was no longer a part of it. My injury pissed me off, and I could do nothing about it.”
Despite his anger, Gilmer, a University of California, Los Angeles, sophomore at the time of his accident, went back to school the following spring. He eventually graduated with a bachelor’s in English, but his downward spiral continued until he had a total meltdown. “I was absolutely going nowhere. I had no future. I could not even imagine a future.” Finally, without hope, desperate, he pleaded to God for help. “I don’t even know if I believed in God back then,” Gilmer recalls. “I was just so broken down that I started to pray, I mean really pray. During my prayers I suddenly felt surrounded by a peaceful presence. That sense of peace gave me hope, the hope I needed to accept my disability and go on.”
Gilmer came to the conclusion that his life was his responsibility. “I realized no one was going to help me — no person, program or job — it was up to me.” He had to work hard to stay on track. Eventually he met the girl of his dreams, moved to Oregon in 1974, got a master’s degree, taught at community colleges, started up an organic farm, became a writer, and ultimately progressed to his current job, when he succeeded Barry Corbet as NEW MOBILITY’S editor in 2000. Over the decades, along with his beautiful wife, he built a family: a daughter and two grandsons — as well as an active, full, and rewarding life for himself.
By this time his wheelchair had become simply a means to get around, and his SCI was old news — until severe cellulitis complicated by venous insufficiency spawned a wound on his left leg that would not heal.
Dealing With Amputation
Cellulitis is a skin infection caused by bacteria. Infection is a leading cause of death for people with SCI, so Gilmer knew his predicament was serious, complicated by his genetic predisposition to arterial plaque (atherosclerosis). A blockage in his femoral artery was allowing little blood flow to the wound. Treatments ranging from antibiotics to surgery were not successful in jump-starting healing. Worse, the wound began limiting his independence and taking its toll psychologically. “I was stuck in bed or sitting with my leg elevated 20 hours a day. I could only be up in my wheelchair for a few hours per day, mainly for eating or going to the toilet. It was maddening.”
After consulting with a vascular surgeon and others with SCI who had had similar problems, Gilmer decided to amputate his left leg before the bone infection could spread further.
The experience was another eye opener. “I don’t think the surgeon thought the amputation would be as big a deal for me because of my SCI — you know, my legs already didn’t work, so it wouldn’t be a major adjustment. He was surprised when I told him I wanted a prosthetic.” Gilmer learned quickly that amputation was a big deal, especially when your legs are paralyzed. “I couldn’t wheel with the same speed and confidence I had before. Routine transfers became dangerous. The prosthetic helps me combat gravity, keeps my amputated leg from flopping around, and allows me to maintain my balance as well as proper seating position. And yes, it keeps the stupid questions at bay.”
Amputation was a difficult choice, but once done, there was closure. “I felt healthier again. The bone infection was making me sick, sapping my strength. I had to adapt to the prosthetic, but adapting is what we all do. I have faith in my ability to move forward.”
Now he is trying to heal a serious wound on his other leg — also from cellulitis. “This wound thing is really troublesome because it keeps going on. It’s stressful on me and my family. But I’ve had another surgery (a synthetic artery graft) and now I’m wearing a wound vac, and this time the wound seems to be healing.” Again, he has to deal with the frustration of being immobile for 20 hours a day, so he holds on to the power of hope he discovered years ago. “I need to keep my mental functioning sharp and not get depressed.”
He is also becoming much more aggressive about his health care. “I have become more confrontational with people in the health care profession when they lack understanding of my SCI and how it does or doesn’t affect my current condition. They should know. I no longer care what people think. I’m very direct, sometimes even blunt with them. Sometimes I have to pull back and remember to be understanding with them as well.”
Nancy Becker Kennedy understands the importance of being assertive when it comes to medical care. “I spent 15 years in the chair before I had a major secondary injury, and the way it was handled created some real complications in my life.” Kennedy, 61, was injured 41 years ago in a diving accident. She went through the initial difficult adjustment period but was able to move on with style. She earned a bachelor’s in English literature, a master’s in broadcasting, and had a blossoming career in news and entertainment when she sustained a femur fracture during an auto accident in 1987. “The fracture,” she recalls, “was pretty bad. An orthopedic doctor put me in a full, hard cast.”
Her rehabilitation doctor, however, told her to have the cast removed immediately or she would end up with bed sores. When Kennedy relayed his instructions to the orthopedist, she was rudely informed that she was not going to dictate her own care. So she had her rehab doctor consult with the orthopedic doctor, but it was too late. When they finally removed the cast, her leg was covered with pressure sores.
“I was working as an actress on General Hospital as a contract player at the time, but because I had to have my leg straight out in front of me, I couldn’t drive or play my part on the show. I really feel that was part of the reason they didn’t renew my character. I had to be off set for months. Out of sight — out of mind.”
She eventually recovered both her health and her career, going on to guest star in several television shows as well as becoming a successful sit-down comedian. The next time she had to deal with a health scare, she made sure there were no mistakes. “My gynecologist discovered a lump and sent me for a mammogram. Medical equipment was even more difficult to access in 1996, and the mammogram operator didn’t want to run the scan. He assured me the lump was nothing.” Kennedy and her doctor refused to take no for an answer, and wouldn’t you know it, it was cancer.
She and her friend researched the best cancer surgeon and oncologist. But even the best was hesitant to be aggressive because of her spinal cord injury. The cancer surgeon wanted to get the cancer out immediately, but took the more conservative approach with a lumpectomy instead of a mastectomy. He also did not think she could handle the chemotherapy because of her disability. But her oncologist believed she could handle chemo as well as anyone else — and she did. “Truthfully, it was easy the first time. No hair loss, no vomiting. It was more psychologically damaging — it scared the shit out of me.”
Unfortunately the cancer returned 10 years later, and Kennedy had to undergo a mastectomy and a stronger regimen of chemotherapy. It was a long process, and there were many more pitfalls this time around. “I got really weak,” she says, “lost my hair, got bed sores, and had to have blood transfusions.” She begged the doctors to let her have the transfusions as an outpatient. They reluctantly agreed. She knew she was making the right decision. “The hospital is perilous the longer you stay,” she says, “especially if you have a weakened immune system.”
Dangers of Hospitalization, Being Careful
I would have to agree about the dangers of hospitalization. In December 2011, I broke my left leg in three places after misjudging the slope of a driveway. I had two surgeries, spent four days in the hospital and the last 18 months fighting several recurring staph infections.
I am 30 years post-injury and have dealt with the typical secondary issues: UTIs, broken toes and the occasional minor decubitus ulcer. But my 2003 pregnancy and the birthing process was probably the most taxing health issue I’ve encountered since I crashed my car and sustained a C8-T1 incomplete SCI in 1983.
The broken leg required me to keep my leg outstretched and immobilized for the first four weeks. In some ways adapting to the larger hospital-style wheelchair was easy. My house was already wheelchair accessible, all my transfers were even heights, and my dogs loved the expanded lounging area my outstretched limbs created. In other ways, I felt more disabled than I had since those first few tumultuous, post-injury years: I couldn’t drive, needed extra help with transfers, and had autonomic dysreflexia spasms and sweats 24/7.
The frustration lasted for weeks, but I adapted. I’d dealt with disability before, I could deal with this. What I wasn’t ready for were the staph infections that continue to plague me. The first one occurred less than a few weeks after my hospital stay. I got a bug bite that went from the size of a dime to a 50-cent piece in two days. Within a week, I ended up in the hospital for an additional surgery to remove the infection. Now every time I get a scrape or a scratch, a pea-size ball develops under my skin. It grows, bursts and becomes an open wound. I continue to see a wound care specialist who attempts to control the infection by keeping the wound clean and applying topical antibiotics like Iodosorb or Bactroban ointment (mupirocin).
If the wound gets worse, I have to take antibiotics. Antibiotics are the last resort because, God forbid, these infections can evolve into methicillin-resistant staphylococcus aureus (MRSA). Right now the staph I have is just a distant cousin to that nightmare, but it has changed the way I live. I am much more careful about everything I do.
Raz Cue, 48, of Las Vegas, has also become more cautious after having a minor injury turn into a major problem because of his disability. “I didn’t know anything was wrong,” says Cue, “but I started getting massive spasms and my leg got weak.” A visit to the doctor revealed the cause: his foot rubbing against the carpet of his new car for several weeks had created a massive blister oozing with pus. He had been completely clueless. “I’ve been an incomplete C5-6 quadriplegic since 1980. I was 15, having fun, dove into a pool and broke my neck. I don’t have pain sensation in my foot, so I had no idea how bad it was.”
Cue experienced the same initial issues with adapting to life in a chair, but like most folks he got used to just living life. He worked in music, owned a recording studio, got a bachelor’s in history, and moved into writing. His first book, Bud’s Love Bus, is available on Amazon.com, and he is currently working on two other books. He plays poker, enjoys video games and is interested in pursuing a degree in electrical engineering. Reflecting on his “disability squared” experience, he says, “I was lucky my foot wasn’t infected, but I had to be so careful afterward to avoid infection. I got a real sense of my vulnerability.”
Although he was only laid up for a few weeks, it made him aware that something as minor as a blister could cause major problems. “I could not believe something so small could affect my independence. It was a real mind f*ck — I began to understand how a major injury or illness could totally mess up my life.”
Being Aware, Surviving
Bobby Rohan, 41, knows an additional injury or illness can screw with your mobility and reminds people to be aware. “Any issue, even if it’s just redness or swelling, should not be taken lightly. Take a critical look and treat it immediately before it gets bad. If you ignore it, odds are it will become serious.” Rohan, a triathlete at the time, sustained a C5-6 complete injury in a bike versus bus accident in 1989. He handled the situation by applying his successful athletic mentality. “Recovery was difficult, but I always worked hard to be my best and push my body to optimal performance.” Now he drives independently and uses a manual wheelchair for mobility. Married and loving life, Rohan is currently the supervisor for No Barriers Peer Mentoring. His advice is to always look for a silver lining.
“Years ago, I got a small scrape on my left pinky. I use my hands so much pushing that within a week the daily wear and tear created an infection that went clear to the bone.”
The doctors wanted to try and save his finger, but the protocol involved six months of IV antibiotics along with the side effects and limited use of his hand. The other option was to amputate the finger and be back to work in a week. So he went for the amputation and is glad he did. “My stub has become a stylus. I can type easier, operate my smart phone quicker and I no longer have to deal with my fingernail coming off from the constant friction between my hand and the wheel. I almost wish they’d remove my other pinky.”
Rohan also broke his left femur water skiing in 1994. “I had a rod and nine pins put in my leg during surgery. I was laid up with my leg straight out for four months.” Pretty much homebound, he remained positive. “A broken leg is an injury that will eventually heal. Sure it’s one step forward, two steps back, but if you can survive a broken neck, you can survive almost anything.”
He may be right, but any injury or illness on top of a disability will ultimately result in a problem that is exponentially larger. Those of us who have made accommodations for, and gotten used to freewheeling through our lives in a wheelchair have met a lot of challenges along the way. That confidence is part of what makes our lives so independent and enjoyable. An additional injury or infection, however, can dramatically undermine that confidence. So be careful out there!