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Tuesday, August 8, 2017

More on Pain

I have been in pain for about ten days. I am functioning reasonably well but tired. Nights are the worst as I toss and turn. I cannot fall asleep with a blanket over my body as the added weight makes the pressure on my hips hurt. I turn from my left to right, lay on my back in a non stop rotation. I am comfortable no longer than two hours. Interrupted sleep is my norm. The pain I experience takes many forms. One can hurt in small and large ways. Pain can be severe or mild. Thankfully I would put my pain squarely in the mild category. For most, physical pain can be managed. For those with complex pain, specialists exist. These physicians astound me. I have seen how pain can be managed with skill and nuance. Despite great advances in pain management there is still disagreement over wether all pain can be alleviated (especially at end of life). The sort of pain I experience is called neuropathic pain. The American Chronic Pain Association defines neuropathic pain as follows: 

Neuropathic Pain is a complex, chronic pain state that usually is accompanied by tissue injury. With neuropathic pain, the nerve fibers themselves might be damaged, dysfunctional, or injured. These damaged nerve fibers send incorrect signals to other pain centers. The impact of a nerve fiber injury includes a change in nerve function both at the site of injury and areas around the injury. 
Neuropathic pain - otherwise known as nerve pain - is a type of chronic pain that occurs when nerves in the central nervous system become injured or damaged. If you or someone you care about has nerve pain, you know that it can erode quality of life. Link:
My spinal cord is damaged and dysfunctional. As a result, it regularly sends incorrect signals throughout my body below my level of injury. Adding further dysfunction is a healed wound on my right hip. The nerves at the wound site have grown back but are as damaged and dysfunctional as my spinal cord. Neuropathic pain is thus part of my life. Unlike, post surgical pain, there is not much one can do about neuropathic pain. In my experience, little can be done to ameliorate my pain. The only thing that has helped has been topical cream on the site of my wound, CBD oil and THC found in medical marijuana. It is impossible to describe the pain and spasms I experience. When others think of pain they think post surgical pain. A good example would be orthopedic surgery such as any number of surgeries for injuries an athlete experiences or hip and knee joint replacement. Pain following the extraction of a tooth is equally commonplace. This sort of pain is easily quantifiable. Enter any hospital and on the wall one is likely to see a chart about the pain level on a scale of one to ten. None of this pain is remotely like what I experience. Pain is not localized and often a wound on my skin does not hurt at the area of injury. I regularly feel pain in parts of my body that should not be hurting. A skin breakdown on my right side can cause a burning sensation on the opposite side of my body. Sometimes I feel pain hours after I have injured myself. I can, for example, debride a wound and feel no pain. However, six to eight hours later I can feel significant pain where I worked on the wound.
People that experience sciatica have an inkling of the sort of pain I experience. I should emphasize opiates that relieve pain following surgery are useless with neuropathic pain. In reading Oliver Sacks recent autobiography, On the Move, he wrote about pain he experienced following knee replacement surgery. The morphine he took during rehabilitation was highly effective. The pain from sciatica Sacks wrote was radically different:
It was not a predictable response to the stimulus of stretching, as the knee pain was. Instead, it came in sudden paroxysms that were quite unpredictable and could not be prepared for; one could not grit one's teeth in advance. Its intensity was off the scale; there was no quantifying it; it was, simply, overwhelming. 
Even worse, this sort of pain had an affective component all its own, which I found difficult to describe, a quality of agony, of anguish, of horror--words which still do not catch its essence. Neuralgic pain cannot be embraced, fought against, or accommodated. It crushes one into a quivering, almost mindless pulp; all of one's powers of will, one's very identity, disappear under the assault of such pain.  

Sacks perfectly describes the sort of pain I experienced as a child. He is correct in that there is no way to describe its essence. One can indeed be reduced to a pulp. The pain I experience is a constant part of life. During the day, pain is not a variable. As I sit at my desk I am too busy to think about pain. Over the years I have learned cold is the best remedy for pain. A walk in freezer is ideal and on more than one occasion I have snuck into huge supermarket freezers. Pushing long distances helps as does using my handcycle. In fact, post handcycle ride my pain level is non existent and spasms are virtually absent. What does not work? Alcohol, opiates, and any sort of depressant. No standard pain relief medication I have ever taken has worked. What is really needed is an original and novel spinal cord injury pain taxonomy. Our understanding of neuropathic pain post SCI is woefully inadequate.  I often wonder if the advances associated with phantom limb pain post amputation may have applications to people such as myself. Regardless, I am lucky. Pain does not impact my life in a measurable way as it waxes and wanes over time. For now I am in a cycle of pain. Tomorrow could be better or worse. I just don't know. One never truly knows the direction of neuropathic pain. One simply must let such pain wash over the body and let it tun its course. For the present I will embrace my inner zen and hope tomorrow is a better day. 

Friday, August 4, 2017

Pain and PTSD

Growing up as a morbidly sick child was hard. I spent many years of my childhood in the hospital surrounded by other gravely ill children. I came of age on neurological wards when there was virtually no diagnostic imaging we take for granted today. Modern pain control was absent--that is no physician specialized in pain control. The number of drugs to reduce severe neurological pain was limited. Yes, opioids existed but even as a child I hated drugs such as demerol. Opiates cloud the mind and mask pain. I quickly realized an injection of demerol may provide temporary relief for up to four hours but excruciating pain would rear its ugly head again. A clouded head to me was far worse than the pain I experienced. Believe me, I suffered. This was never the fault of the fine neurologists that managed my care. The fact is nothing could really be done for the type of pain I experienced.

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:  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.

Saturday, July 29, 2017

Denver Colorado Fun

Marijuana is legal in the great state of Colorado. For those that would like to know more about the legal use of marijuana in the state here is a link: For those that might visit Colorado here is another link that serves as a guide. Link:

Like many, long ago I smoked marijuana in college. Never did I dream it would become legal. Never did I dream of seeing the sort of buds I saw today. A revolution has taken place and I have been happily oblivious. But no more! There is a world to explore and I am a happy man. Here is proof positive I am man of good cheer.

Remember my good readers the above is perfectly legal and I remain a law abiding citizen.

Monday, July 24, 2017

Illness as Metaphor--Hard to Kill a Bad Idea

Last week John McCain announced he had brain cancer. This is bad news for the 80 year old conservative politician. Worse, the cancer, a glioblastoma, is an aggressive and almost universally lethal. When I heard the news my head dropped a bit. I may not like McCain but this is a devastating diagnosis for any human being (especially when one is 80 years old). The odds McCain will live another five years is remote. You don't need an MD to come to this realization. You also do not need to be an MD to know immediately upon hearing the news military metaphors about McCain's "fight against cancer" would abound. Within hours, Twitter lit up with well wishes. When I read about what a fighter McCain is and that he and he alone was the one man that could beat the cancer I did my best to stop reading. Using cancer as a metaphor was debunked long ago by Susan Sontag in her searing memoir Illness as a Metaphor. I read Sontag's book in college. It was a transformative experience. I had just been paralyzed and despised my stigmatized identity. I seethed inside with a burning rage. After a decade of being morbidly sick as a child I was for the first time medically stable and living in a dorm at Hofstra University. In an effort to understand my fall from grace, I read. I was a voracious reader in search of answers: why did my existence seem to be an affront to others? Why did society freely and openly discriminate against people with a disability. It made no sense to me. Enter Susan Sontag and her complete and utter rejection of metaphor in terms of illness. It did not take a huge leap in logic and apply this to disability. The below quote is one that I underlined and have likely read thousands of times. If pushed I think I could paraphrase this from memory:

Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.
I want to describe not what it’s really like to emigrate to the kingdom of the ill and to live there, but the punitive or sentimental fantasies concocted about that situation; not real geography but stereotypes of national character. My subject is not physical illness itself but the uses of illness as a figure or metaphor. My point is that illness is not a metaphor, and that the most truthful way of regarding illness—and the healthiest way of being ill—is one most purified of, most resistant to, metaphoric thinking. Yet it is hardly possible to take up one’s residence in the kingdom of the ill unprejudiced by the lurid metaphors with which it has been landscaped. It is toward an elucidation of those metaphors, and a liberation from them, that I dedicate this inquiry.

I know all about the "night side of life". I have resided in the kingdom of the ill and I was liberated from it long ago. I was also liberated and freed intellectually by Sontag and others. My liberation was the forceful rejection of the stigma associated with disability. As a young man I was enthralled--Sontag eloquently rejected the metaphors associated with cancer and illness in general. Her book was short and devastating blow to the daily bigotry I encountered. In my mind, she destroyed all the demeaning metaphors I had heard as a morbidly sick child. All those terrible and destructive metaphors came to mind when I read the flood of good will messages directed at McCain. I had heard them used to describe me as a boy. Even then I knew they were wrong. McCain is no ordinary man. He is a fighter. He is tough. Cancer does not know McCain--he cannot be defeated. He is a hero! Cancer can't beat McCain. Bull. Cancer does and will "beat" people. Cancer kills and that is a fact. People fear cancer. In much the same way, people fear disability. Christopher Reeve and his desire for cure is embraced and he is lauded over as the symbol of American spirit and the will to fight for a cure to paralysis. I and others who advocate for equal access to health care, education, employment, housing and mass transit are despised. As we have seen nation wide, ADAPT protests result in arrest and people with a disability are carried out of building by police screaming about Medicare and liberty. These are the lurid images and remind me of the bad old days when I too put my body on line for equal rights.

Resistance and liberty are worth fighting for. This fight is never about one person. It is not about me and the long odds I supposedly overcame to reach middle age. The fight against cancer is not about McCain's toughness or character. He will not be loser when he dies. The metaphors Sontag rejected remain. These metaphors are deadly because they obscure the real issues. What is the real issue? Access to health care and the built in and deeply ingrained ableism that is ever present in the fabric of society. I am not worried in the least about McCain. He will get world class health care. Almost all the mainstream press coverage ignores the harsh realities most with a glioblastoma will encounter. Being sick in America is a job. It requires a full time effort to insure bills get paid. Being ill requires health insurance. Without insurance one's experience and chances of survival become very different from what McCain can expect. In the Atlantic, James Hablin wrote:

The war cries omit the central fact that if McCain does live another five years, against long odds, the most significant factors in optimizing his chances will have been his access to the best available medical care—and to a supportive family, and to having his basic needs met without a second thought. McCain’s survival would be because he is spared the fights that many cancer patients are not—not the 28 million Americans without health insurance, and the 43,537,800 living in poverty. Link:

I can attest to the fact survival has nothing to do with personal integrity or moral character. I survived and become the man I am because my parents fought and insured I got the very best medical care humanly possible. I was lucky too. My parents happened to live near New York City at the exact same time pediatric neurology as a field of specialization was created. I regularly interacted with the founders of pediatric neurology who oversaw my care. I had a supporting cast of health care workers at a time when little could be done and in this absence received empathetic care. I am alive because of happenstance, privilege, and luck. I was not one iota different than all the morbidly sick children I knew that died.

The language associated with disability and cancer matter. The national discussion about McCain's character matters. It is a smoke screen that makes others, typical others who are not sick, feel better. I am not breaking any new ground here. What I am is a very small part of social, political, and intellectual dissent. As I often joke when attending academic conference, I am the cranky guy in the back who asks the hard questions. There is a reason some groan when I show up at a meeting. It is all too easy to use metaphors and intellectualize cancer and disability. I get it--I am a scholar and write for other scholars. This work is intellectually satisfying. Yet at night I lose sleep over the fact I feat academic discourse obscures the gritty reality of what people with a disability experience day in and day out. I have read many challenging books in disability studies, bioethics, philosophy, and a host of fields in the social sciences. When I am done reading I often wonder what good are these challenging books and essays when poverty abounds within the land of disability. What is the point of disability studies if the unemployment rate of people with disabilities has not changed in nearly 30 years? What is the point of bioethics if people with a disability still encounter social and physical barriers when trying to access health care? What is the point of writing about access to mass transportation if the bus drivers I have encountered in Denver don't like to use tie downs for my wheelchair and put my safety at risk?

In recent weeks I have struggled with the idea of futility. Everything seems futile. The fight to protect Medicaid. Charlie Gard and his parents efforts to bring him to the United States for futile medical treatment. The fact only 15% of dying Americans ever get to hospice care. The GOP effort to repeal and replace the Affordable Care Act. The passage of assisted suicide legislation. The presence of Donald Trump and his continued effort to effectively appeal to hatred and ignorance. The world seems to be a bleak place. And yet when I am a ready to pack it all in I see great beauty in the world. Just last night I went to the Cherry Creek Park near my home. Over 1.7 million people a year visit this 4,200 acre park near Denver. I live in big sky country and last night was spectacular.

Friday, July 21, 2017

Mundane Observations About Living in Denver

Yesterday I wrote about having a heart attack and how vulnerable I was hospitalized as a man with a disability. Since I was released from Yale New Haven Hospital and my lease in Syracuse expired I spent a few days saying final goodbyes. Leaving the city of Syracuse was easy. Leaving the close friendships I had formed was not. Driving from Syracuse to Denver in three days was a blast. I love long cross country trips. I am fascinated by interstate culture and the vastness of this nation. If you ever find yourself in rural Nebraska I highly recommend visiting Car Henge in Alliance. If in Iowa, the Iowa Museum of Aviation is another trip worth your time and energy. This says nothing of Iowa City, a picturesque and vibrant college town. 

One may ask, rightfully so, what have I changed in my life post heart attack. The answer is a lot. I have had to abandon some real food and drink loves. For those that know me, Coke is not a soft drink but rather “Holy Water”.  No more Coke for me. Caffeine is not good for the heat. This is obvious as when I do have the random cup of tea I can feel the beat of my heart change. This is an unpleasant sensation. No more hard alcohol. No Sailor Jerry rum. No sailing at night as I watch a mindlessly bad movies. Sailor Jerry also just happened to go hand in hand with Coke and pretzels. Of these three staples—coke, rum and pretzels--rum was easiest to give up. I never cared about the booze but rather the flavor when rum and Coke were mixed together. I do have a Coke on occasion (at most once a week). I even tried a Coke Zero and a Diet Coke. I do drink very small amounts of alcohol. It is not the alcohol I am drawn to but the ritual. I enjoy a drink and salty snack at the end of the day. I now have one or two small glasses of port before bed time. I do mean small as I follow the American Heart Association and Heart Rythym Society Guidelines to the letter. The real struggle has been the elimination of salty snacks. Growing up one of many nicknames I had was “pretzel peace”. I love pretzels. I love salty foods too. They are absent from my diet. The impact of lower salt and little alcohol has had a profound impact on my body. I no longer have chronic edema in my legs. My knees look big and my legs appear to be spindly. This makes transfers of all kinds much easier. 

Other changes are related to living at altitude. I use sun screen daily.  The sun in Denver seems ever present and is intense and hot. Without sun screen I would become lobster red. I am also drinking up a storm. I have given up my penchant of living on the edge of dehydration. I drink water all day long. I use cream on my skin many times a day. Denver air is dry and arid. The humidity level is very low. Moisture is sucked out of my body in a way that is startling and vastly different from life lived at sea level.  

The move to Denver has been most interesting from a cultural perspective. Downtown Denver is awesome. I am minutes away from the light rail line station near my apartment and a mere 35 minutes from the downtown. The rail system as near as I can tell is 100% accessible. The elevators are as clean as can be expected and unlike a city like Boston and the gritty Northeast in general homeless men do not use the elevator to get high or use it as a toilet.  The busses are merely okay. The drivers stop but seem to have an aversion to using the tie downs for my wheelchair. I can only assume they are accustom to those who use large heavy and power chairs. I have been repeatedly told "You are only going a few stops. You don't need to be tied down." This is great in theory but if the bus is in an accident I will become a projectile. What has struck me the most about the Denver area is the number of people with visible disabilities out and about. I see blind men and women daily. Typically they form a  guide dog team but I have observed many cain users as well. I find the dog human partnership in this regard fascinating in part because of the intense bond formed. What I find of great relief is not being alone. I see people using wheelchairs daily. Earlier this week I got onto the train at Union Station with another wheelchair user. She was a young woman in a power chair. She could not have been more typical--tight black pants and bright yellow top with a snarky line. What set her aside in my mind was the fact she was non verbal and used an iPad to communicate. I silently thought to myself this is going to be a disaster when the train operator wanted to know her destination. Without a hitch, he looked down at the iPad and established her destination. This was strikingly ordinary and uplifting. Maybe being green is not so hard.

What I have not done is explore too much. My main focus has been on unpacking. To this end, every box has been emptied. As a neat-nick living with boxes scattered everywhere and a cluttered kitchen is more than I can tolerate. Everything has been put away but don't ask where it is. In the immediate future I plan to explore the medical marijuana industry. Medical marijuana is legal and abounds in Colorado. The Denver Post has an entire section on cannabist culture. Sadly, it appears cardiologists take a dim view of medical marijuana. I asked about any heart related benefits of medical marijuana and the question was not well received. As a model of patient compliance I quickly let matter drop. 

I will readily admit I am very concerned about the future. My health insurance status remains unclear. I cannot move forward without health insurance. It is priority one as no one can afford heart related health care without vigorous insurance. Forget about invasive tests, medications alone can bankrupt a person. Next generation blood thinners represent a huge advance in health care but the cost is outrageous. A seven day supply of Eliquis costs well over $100. For the time being I can afford this medication thanks to the coupons I was given. Yet when the coupons expire I have no idea what will happen. What I do know is that I am at long last about to burst forth with a series of posts. I also have begun reworking long term projects that have languished for a while. If anything positive comes from a heart attack it is the knowledge that life is far too short. It is time to get things done. That time is now.

Thursday, July 20, 2017

Heart Attack, Vulnerability and Disability Based Bias

Since I started my blog years ago, my goal has been to reach as wide an audience as humanly possible. To this end I have succeeded beyond what I thought was possible. As of today, over a million people have read my various posts. This gives me great satisfaction as this blog is a labor of love. I have consistently tried to put up two to four posts per month. In this regard, I have not been as successful as I had hoped. Recently, I have been particularly silent and for good reason.

I have been sick. I have not been sick in a routine manner. As is my life long penchant, when I get sick I do it in a big way. In April I developed serious cardiac issues that resulted in an Emergency Room visit. I thought this was an isolated incident. I had developed a very common form of arrhythmia called Atrial Fibrillation. I was prescribed medication and felt significantly better until June. My cardiac issues worsened suddenly and significantly. No way to mince words here--I had a serious heart attack. My heart has been damaged. The extent of the damage is unknown. I could have significant coronary disease or not. Regardless, there is no way around the fact I will be seeing a cardiologist for the rest of my life since I remain in heart failure. While this sounds terrible (and it is) millions of people are walking around with heart disease. Reading the physician reports about my heart is sobering.

Perfusion imaging was abnormal showing a large sized, severe intensity, fixed perfusion defect in the basal to apical and inferolateral walls consistent with a scar. Left ventricle ejection fraction was severely depressed with inferior akinesia"

Mildly increased left ventricle cavity size. Severely decreased left ventricle systolic function. Mild concentric left ventricular hypertrophy... Severe global hypokenesis. 

To comprehend the above, I have gotten a crash course on heart structure and arrhythmia. As noted above, Atrial fibrillation is very common. It is unlikely I will suddenly drop dead. It is also highly unlikely I will get out of a fib without some sort of invasive procedure. I am considering cardiac catheterization and cardioversion. Ah, consider. Based on my most recent visit with the cardiologist, the word consider is misleading. I really have no choice. I cannot remain in a fib. Time will become an issue. Action, invasive action, is needed in an effort to return my heart to normal function. Ah, that word--normal.  I have felt anything but normal accessing health care. I have consistently been patient profiled. I have been profiled in a way that has put my health at risk. I have felt threatened and expressed my concerns to health care professionals. The results have been mixed at best. For example, when admitted to Yale New Haven hospital I was instantly identified as a "fall risk". A nurse put a bright yellow tag on my wrist with black type "FALL RISK". Two bright yellow socks were tied at the foot of my bed that also emphatically stated "FALL RISK". Not one health care professional asked me when was the last time I had fallen. No one asked me anything about falling. When asked why I was identified as a fall risk I was told because I use a wheelchair. Anyone individual who uses a wheelchair is deemed a fall risk. The fact I have not fallen out of my wheelchair in years was not relevant. The fact the yellow arm band "FALL RISK" kept getting caught in my spokes as I moved or transferred to my bed were dismissed. I was told this is standard policy. Concerned about falling during a transfer, I cut off the yellow "FALL RISK" arm band and removed the yellow socks from my bed. This was merely the tip of a very large disability based bias that was ever present.

I was repeatedly told "we have never had a paralyzed patient like you" or "no one has ever asked such questions." My questions were not obscure. What sort of access is present on the cardiac floor? Where is a bathroom I can access? Will diagnostic equipment be accessible? What became evident was not shocking--no protocol existed for people like me. None. I was singularly unique--a fact I was reminded of many times a day. The first room I was admitted to was grossly inaccessible in every way humanly possible. I could barely get to the sink and the toilet and shower were not remotely accessible. My request for air fluidized bed upon admission was met with a simple no. We don't have beds like that. My risk for a bed sore went up exponentially. The academic part of my thinking was not surprised. I know the grim facts about disability and health care. Let me give a few bullet points.

People with a disability receive less routine medical care.

People with disabilities receive less cancer screening, dental care, flu vaccines and pain medication.

People with a disability cardiovascular risks are increased due to obesity and hypertension.

People with a disability are twice as likely not to access medical care due to cost.

People with a disability are three times more likely to have difficulty finding a physical willing to accommodate their needs.

The barriers I encountered to were not due to uncaring health care professionals. In fact, I was admitted to a world class hospital facility--Yale New Haven Hospital. Yes, I was in a teaching hospital and an Ivy League one at that. Yet I was about to get in education in alienation. It did not take me long after admission to realize I was not going to get adequate care. Once sent to the cardiac floor, put in a standard medical bed, deemed a fall risk, and my request for an adequate bed dismissed I did not see a physician for 12 hours. At 5AM I freaked out. I knew I needed help. I was teaching at Yale's bioethics summer intensive. Better yet in terms of irony, the night before I was admitted I had met with the hospital ethics committee and talked about the Ashley Treatment. I knew some powerful people who would help.

In the pre dawn hours I realized I was in real trouble. I was vulnerable. I was at risk. I had no family who would be willing to help. I was completely alone. In desperation I texted the director of the Yale bioethics program. Please help! Calls were made on my behalf and before the morning was over my care took a turn for the better. A steady stream of people were in and out of my room. Not one but three people were on the search for an appropriate bed and accessible patient room. It would be very easy of me to hang Yale hospital out to dry. The facility is grossly inaccessible. This did surprise but the inertia created by the repeated observation "this is a very old building and hospital" did. Despite the great amount of work on my behalf, nothing has changed to the infrastructure at Yale as a result of my visit. Yale remains one of the most inhospitable campuses for wheelchair users I have ever visited. If it is bad for me as a visiting scholar, I shudder at what under graduates must experience.

The gritty reality I faced at Yale is a nation wide shame and civil rights violation that has cost the lives of an untold number of people. The health care system is not prepared to deal with people with a disability who get sick. Transportation within and to the hospital is problematic. Accessible medical equipment is inadequate or utterly absent. Safe methods of transfer are unknown. Stigma abounds. Wherever a patient such as myself with a disability went problems abounded. No one knew what to do. I was a problem. Accessible exam tables were absent. Accessible bathrooms were non existent. It took dedicated and driven health care professionals to find a patient room with an accessible bathroom. The only reason this effort took place was because word got out I was, gasp, a visiting scholar. Upon admission I was assumed to be just another wheelchair user who had no life, no job, no family. Friends and fellow scholars visited and calls were made on my behalf. Without the efforts of unnamed friends and colleagues my treatment would have been substandard--think comfort care.

I have been badly shaken and my world has been turned upside down. I am fearful for my life. This fear is not based on concern for my heart though I am deeply worried. My fear is the lack of care I will receive. My fear is the negative assumptions made by health care professionals and the complete lack of access within medical facilities. My fear is based on the ignorance associated with my disabled body and the lack of any protocol in place to insure a hospitalization is safe. I ended up leaving Yale without any skin breakdowns but that would have happened had I not been able to use an appropriate bed. A bed I was told was not available upon admission.

I think my future existence can go one of two ways--I have significant heart disease and will continue to get worse. Significant surgery might be needed and my future is limited. At the opposite side of the spectrum, there is a chance this is an isolated incident. Medications will be effective in both the short and long term. I will one way or another get back into a good heart rhythm and look back periodically and think I dodged serious trouble. Of course, there is a middle ground between these polar opposites. Much will be learned once my health insurance kicks in. As for now, I remain uninsured. That will change soon now that I am a resident of the fine state of Colorado. Yes, in the midst of teaching and having a heart attack I moved to the Denver area. New York to Denver was a long drive though there were highlights such a Car Henge in Alliance Nebraska and the Iowa Museum of Aviation. This move is a dream come true. I have always wanted to live out west and now I do. I love the Denver rail system and am struck that I am no longer the one wheelchair user where I go. Better yet, I am ready to write after my long silence so get ready for many new posts in the coming days and weeks.

Sunday, June 11, 2017

Times Are a Changing ?

What one recalls from raising a child is interesting. My son, now an adult, have reminisced more than usual in the last two months. What struck me is that we have many shared cherished memories. What we recall the most are the numerous trips we took together when he was a child. We repeatedly visited some cities. Baltimore was his starter city. It was just four hours from our house and we loved the Inner Harbor area and Camden Yards where the Orioles play baseball. We spent much time in Wyoming in Yellowstone National Park and Grand Teton National Park. Boston was another city we enjoyed as Old Ironsides was a fascinating as were the many wonderful. Washington DC also holds many memories. One memory dominates my thoughts of Washington DC. Dominate is not the right word. One memory plagues me over a decade later.

In 2004 I took my son to Washington DC in the spring. We had one destination in mind--the newly opened Steven V. Udvar-Hazy Center. As aviation enthusiasts, we were excited. My son wanted to get into a fight stimulator and see military aircraft while I wanted to look at the Space Shuttle and a host of other planes. The Udvar-Hazy center is massive.  For the first time in history the Air and Space Museum had the space to display the finest and most historically important aircraft. We stayed near the Mall and planned to take the Smithsonian Shuttle bus to the new center near Dulles Airport. The first day the wheelchair lift work though the drivers to and fro were obviously perplexed and had no clue how to use the lift. The second day we tried to use the lift and things went wrong. It was obvious the wheelchair lift was not going to work. The bus driver was being pressured to get the show on the road. People on the bus were eager to get moving. I have written about what took place in the Ragged Edge. Link: The bottom line is I crawled up the front steps of the bus and onto the nearest seat. I am haunted by this. My son and I still talk about what happened. We wax and wane. Sometimes he feels guilty. He just wanted to go to the museum. Other times he thinks I made a mistake. I vacillate to this day about what I did. Of one thing I am certain. Not a single person on that bus gave a damn that I had to crawl on the bus or be left behind with my son. In this regard, my son and I are in total agreement. No one on that bus cared about my right to get on the bus.

Fast forward to last Friday. I am settled in New Haven and over the course of the last eleven days have enjoyed my time. I am tremendously impressed with Yale's Sherwin B. Nuland Summer Intensive in Bioethics. This is not a surprise as I have sent two former Syracuse honors students to the program. This summer I am a seminar leader and ave enjoyed my time with my fellow seminar leaders and students. I am particularly drawn to the fact 58% of student are from abroad. The director of the summer program, Lori Bruce, has been proactive in insuring the program move forward as smoothly as humanly possible. The program has many moving parts and Lori Bruce has done a masterful job. She has bent over backwards to insure access issues are not a problem--or as least problematic as one can hope on the Yale campus where wheelchair access remains a challenge. I assumed I would be forced to stay in the dorms as an accessible sublet in downtown New Haven is akin to a needle in a haystack. The dynamic Bruce actually found an accessible sublet with air-conditioning within a mile of where we would be meeting over the month of June. I was not just impressed but astounded.

On Friday we were taking a trip to the Hastings Center in Garrison, New York about two hours away. Bruce had arranged for two coach busses for transportation. I was deeply skeptical. My experience with coach busses is overwhelmingly negative--hence the story above. Coach busses have lifts but I would estimate that when I try and use the wheelchair lift located in the back it does not work 95% of the time. The norm is for the bus driver to attempt to get the lift to work and if it is not operational within 10 minutes I am left by the curb side. Bruce made dozens of phone calls during the week to the bus company. Pressure was brought to bear. The bus we expected would have a working lift. My fingers were crossed but I expected trouble. Trouble we got. Two coach busses appeared on time. The wheelchair lift on the first bus did not work. The wheelchair lift on the second bus did not work. This is exactly what I expected in spite of Bruce's efforts.

Thirty minutes pass. An hour passes. The lift on both busses are not working. The driver is upset. There is much milling about. Bruce spent much time on the phone. The bus drivers are consulted repeatedly. They assure us the lift was cycled the night before and just hours before the bus left the depot. After and hour has passed, I suggested to Bruce the busses leave without me. I have been to the Hastings Center. It would be wonderful to reconnect with the research scholars I know but the trip is not imperative. I get an absolutely no from Bruce. We are all going--end of discussion. Based on Bruce's body posture, stern look, and dedication to insuring the program be as inclusive as possible I knew this is not a subject of discussion. I told Bruce I deeply appreciate the solidarity but we have nearly 70 people on two busses many of whom have never been to the Hastings Center a leading bioethics think tank. I was willing to fall on my proverbial sword. However, I did wonder is this 2004 all over again? Will I watch two busses depart while I am left at the curb? I am not crawling on the bus--that is a certainty. If this is an all or nothing decision I have a hard time believing 70 other people are willing to miss out on an opportunity of this type. I wonder will people hate me or will they not care one iota. Bruce and I had a brutally direct conversation. She told me I had the unanimous support of every person on the bus. I was nothing short of stunned. She meant it as did others. I really did have the support of students and fellow seminar leaders. Without question, this is a first. Never has anything like this ever happened in my life.

Here I am forced to depart from my usual Bad Cripple and undermine my moniker. There is no social outrage. Instead, I have support. A lesson in ethics took place. Many people throughout the 90 minutes expressed disbelief. How could this happen? This is outrageous. More than once I simply said, "welcome to my life" or "this is the norm in the land of disability". Nothing is ever simple and social and physical isolation remain the norm. As I feel asleep the night we got back I thought of the hundreds of planes, trains and busses I have been unable to get on and off with a modicum of ease and dignity. Never had others expressed a hint of solidarity. Not once. I will remember the Smithsonian Museum bus shuttle incident for the rest of my life. I will also remember the solidarity I shared with 70 other people. Quite the opposite experience. And perhaps it is proof that times have changed. Maybe there is hope. Maybe I will live long enough to experience a social and physical environment that bus welcomes my existence.