In the last few years memories long buried have slowly started bubbling up like a toxic sludge I did not know existed. My mind is a jumble of disjointed long forgotten memories. These memories are largely unpleasant. The smell of my own urine in the morning when it is most likely to reek can trigger memories. Like many paralyzed people, I initially struggled with urinary tract infections. This morning I vividly recalled getting sick in New York City. I called my brother Jim at work, told him I was very sick and needed a ride to the hospital. I will forever remember stopping at a red light in Harlem (at 125th and Broadway near the Cotton Club) on our way to Columbia Presbyterian. My body was on fire. My temperature was at least 105 f. I was shaking violently. I was in great pain. Yet what I remember the most was the grim look on my brother's face. His jaw was stiff--his eyes burning into the light as though he could will it green. It was a look I only saw once in my life.
I am often asked what was the worst pain I felt. That is a tie. On two occasions I felt pain so severe I still dream about it. The first was when I was nine years old--my first real memory. It was a Sunday morning. I wanted to watch Go Speed Racer Go, my favorite cartoon. As I walked downstairs pain began to shoot up my legs like lightening bolts. The fireworks of pain exploded in my chest, shot around my waist and into my lower back where my muscles were in violent spasm. My skin turned fire engine red, I collapsed in a heap at the bottom of the stairs. I could not feel or move my legs. All I felt was pain--the sort of pain that is so unimaginable I would not wish any human experience it. I let out a blood curdling scream. My parents ran to me as the sound emitted from my mouth must have been horrible beyond belief. Writing these words brings tears to my eyes--first for my parents and then for me. That day was the first of a decade long decent into entropy. Bodily disorder reigned supreme. The second worst pain I experienced followed a spinal fusion to correct scoliosis. The year was 1976. Scoliosis surgery was a new thing and surgeons were experimenting on techniques. Post surgery my spinal cord swelled causing severe spasms in my legs. I was lying on my back and my legs would shoot up to my chest in an uncontrollable and sudden movement every 5 minutes or less. Nurses were instructed to hold my legs down. The spasm were so strong I could lift a nurse up as she sat on my legs. The pain this caused made me wish I had not survived the surgery.
These memories and more are flooding back. It is possible I am recalling more of my dreams because the beta blockers I am taking to regulate my heart beat affect one's sleep. Perhaps it is the pressure of the move to Denver and not knowing the status of my heart condition. Regardless, long forgotten memories dominate my thoughts these days. It does not help that I have had a week of pain--not severe pain I experienced as a child. The pain I have now is chronic. In 2010 I had a severe wound on my hip. The lasting legacy of the wound is pain. I consider myself lucky though--I survived the wound. It healed and has remained healed. Other paralyzed people are not so lucky. Some severe wounds never heal. Many paralyzed people die of such wounds. They are a frightening and grim part of life with paralysis. Worse, our health care system is not designed to keep paralyzed people healthy. The best wound is no wound. Prevention is everything. Insurance does not pay for preventive care like effective, though costly, wheelchair cushions and beds that relieve pressure on the skin. In this nation we react after a wound exists. For example, my last health insurance policy covered wound care. Dig a bit deeper into the language of coverage and that coverage only kicks in when one has a demonstrated medical need. A demonstrated medical need is defined as three hospitalizations in a calendar year for a pressure sore. Once I have had three hospitalizations a cushion designed to prevent wounds would be covered.
The world of paralysis and life in disability land is a harsh existence. Sure the ADA has helped as have many other laws designed to protect my civil rights. None of these laws prompted Yale New Haven Hospital to make their rooms accessible. None of the laws have resulted in making diagnostic equipment and marvels of medical imaging accessible to the paralyzed. Our health care system has no disability based protocols. None. If one of the leading teaching hospitals in the nation falls back upon the sorry and inadequate excuse "sorry but the hospital is old and was built before the ADA" what happens at less prestigious hospitals? What happens at hospitals designed to serve the poor? The failure here is twofold: first, disability, if considered at all, is based on the premise of limited mobility. The sort of limited mobility an elderly person can manage. Standing for a few minutes, taking a few wobbly steps to a bathroom. Total paralysis is not ever a consideration. We paralyzed people are forced to adapt to an inaccessible environment. Second, the lack of consideration to paralyzed people and more generally disabled people in general who rely on a wheelchair is a social failure. There is always talk about the future--the new building, the new wing etc. that will be fully accessible. This does not do me and others any good in the here and now. I am done waiting for future access. I think 27 years of waiting is more than enough.
Simply put, disability is hard. It is hard because one is dealing with obvious physical deficits. Existing physical deficits are made far worse by a disinterested health care system and social system that has ableist practices woven into the fabric of institutions. Admitted to Yale New Haven hospital, wheelchair users are instantly deemed a fall risk. No questions were asked about when was the last time I fell. When I questioned why I was deemed a fall risk I was told "All wheelchairs are a fall risk". I was not a human being but a wheelchair.
A yellow arm band was apparently inadequate. A yellow sock was tied to the foot of my bed as well. I untied the sock and threw it in the trash. I cut off the fall risk arm band because it got stuck in my wheel as I pushed. The band itself was putting me at risk of falling. The point here is with time most paralyzed people adapt and manage quite well. However, disability remains needlessly hard and grossly misunderstood. We people with a disability are rarely treated well. We remain the other--somehow always different and always less. We are relegated to special busses, resource rooms in schools, rear entrances to the best and worst buildings, special wheelchair lifts, and special services of all kinds that provide substandard conditions and accommodations. Doubt this and go to a rehab hospital or nursing home. The first thing you will be accosted by is the smell. The stench of urine, feces and the warehousing of humans that have no value--conveniently called the disabled--is a human rights tragedy our nation turns a blind eye to.
The above sounds harsh. Disability land is harsh. It has been harsh for decades--a thought that has been at the forefront of my mind since reading Ron Kovic's new novel Hurricane Street. I never met Kovic. I was about ten years too late as we both spent time on Long Island where he grew up and I attended Hofstra University. Most people remember Kokic for his seering anti war memoir Born on the Fourth of July. I did not like Kovic's book or Oliver Stone's film under the same title. I did not share Kovic's anger and fury. I did share his moral outrage. Returning Vietnam veterans were treated horribly. Spinal cord injury was the signature wound of the Vietnam War and those veterans suffered at the hands of a disinterested general population and a disgraceful VA hospital system. In Hurricane Street Kovic wrote:
There are the bedsores and the catheters, the urinary tract infections and high fevers, the lack of sexual function, spasms, and terrible insomnia that torments you at night. Each morning you wake up wondering how you're going to make it through another day. There is an entire body that does not move or feel from your mid-chest down and you are constantly lifting yourself up from your cushion in your wheelchair to keep your skin from breaking down. You're scared and you do your best to hide all you have lost, all that you're going through...
You struggle to look normal--to fit into this world again after all that has happened to you. It all seems so overwhelming at first, but somehow you find a way to continue on. There are anxiety attacks and the horrifying nightmares, the depression and thoughts of giving up. You do your best. You've got to keep living. you've got to keep getting up every morning no matter how crazy it all seems. You're amazed that you're still alive, that after all the frustrations and confinement, in and out of bed, fevers, IVs, wetting your pants, soiling sheets, you're still here, still in this world.
You try to sit proudly in your wheelchair every day, try not to lose your balance. It is incredible how normal a person can look if he only tries. You do your best to get back into life again but you know deep down inside that nothing will ever be the same again.
I am among the luckiest of paralyzed people. My struggle is not physical. I haven't had a urinary tract infection in well over 30 years. I have had a grand total of one skin break down that required medical intervention. I have been rock solid stable for nearly four decades. My struggle is social--a daily fight against social and economic oblivion. Just yesterday I was blessed by a homeless person outside of Coors Field. This man wanted me to know he was praying for me. No man, I was told, should be struck down by God as had been done to me. This man knew I had a good soul. He told me that even God makes mistakes. God strikes down the wicked and evil doers. I should not be among the people. I shook this man's hand and wished him well. He was perhaps the least bigoted person I dealt with that day. I am not afraid of street people. I am afraid of the GOP and Republicans that want to destroy our health care system and see the Affordable Care Act fail. I am afraid Medicare will be gutted. I am afraid of getting sick. I do not want to go bankrupt nor do I want a kind compassionate physician to decide I have suffered enough and deserve a good death.
What is a paralyzed man to do? Move relentlessly forward. Enjoy life and spit in the eye of the tiger. If anything good has come out of the GOP assault on the Affordable Care Act it is the increasingly high profile of ADAPT. For the first time in memory, ADPAT protests are getting mainstream media attention. In Colorado, Senator Cory Gardner is moving his office according to a report in the Denver Post. Gardner's office is in a commercial building and has been subject to multiple demonstrations in recent weeks. What the Denver Post article did not state was the protests were led by ADAPT and resulted in several arrests. Gardner stated all Coloradans are welcome to his new office. That is not true. If you want to know how Gardner truly feels about his constituents, especially those who recently protested and staged a sit in I suggest you read the following article. Link: http://www.denverpost.com/2017/06/29/cory-gardner-office-protest-removal/ If you want to know what the front line soldiers in disability rights are doing I suggest you gaze long and hard at the photograph below. These are the people that make waking up a joy. I know I am not alone.