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Thursday, October 5, 2017

Jeremy Bentham: Pleasure and Pain

In the last four months my experience with pain has been problematic. Neuropathic pain is difficult to manage and poorly understood. My threshold for pain is exceptionally high--a physical trait that came in handy as a morbidly sick kid and a paralyzed adult. I am quite capable of putting the pain I experience out of my mind on a daily basis. If I concentrate on something intellectually stimulating during the work day I can work effectively. The key here is to be active physically or intellectually at every moment. The problem arises when the work day is over and I am physically and intellectually spent. This is when I struggle. I have had some very long nights in recent months. For me the pain is largely in my hips and feels like an unrelenting burning sensation. Usually I can fall asleep but am woken by the pain between 2am and 3am. Sleep after pain wakes me up is elusive.

There is no doubt I am very lucky. Many people with neuropathic pain truly suffer. No medications I am aware truly eliminate neuropathic pain. Clouding the mind with narcotics is out of the question. THC found in recreational marijuana provides some relief but I do not like the high associated with it. Cardiologists frown upon alcohol so I drink in strict moderation. No more rum and coke for me. CBD oil and creams are something I have started to explore. None have been effective to date. In short, pain relief is illusive.

Middle of the night pain sucks. Again, I am lucky. I rest and read. Lately I have been reading on my phone. There is an amazing amount of high quality classic scholarship readily available. Lately I have been reading work by Jeremy Bentham. Today, Bentam is known for his moral philosophy and utilitarianism. I tried reading enlightenment thinkers such as John Locke and David Hume but found Benthem more relevant. Bentham's empiricism appeals to my anthropological mind. Bentham's hedonistic account of what motivates people in terms of pleasure and pain presents an interesting dichotomy. When one is sitting up in the middle of the night experiencing neuropathic pain happiness or pleasure is reduced to living pain free. Life is very simple when this dichotomy is at the forefront of one's mind. In the Introduction to the Principals of Morals and Legislation Benthram wrote:

Nature has placed mankind under the governance of two sovereign masters, pain and pleasure. It is for them alone to point out what we ought to do, as well as to determine what we shall do. On the one hand the standard of right and wrong, on the other the chain of causes and effects, are fastened to their throne. They govern us in all we do, in all we say, in all we think: every effort we can make to throw off our subjugation, will serve but to demonstrate and confirm it.

Life is exceedingly complex yet when reduced to principals of pleasure and pain at 2am constructing a calculus of value becomes possible. Since last June when I started reading Bentham again, I have found solace in the pain pleasure dichotomy. I accept the pain that washes over my hips late at night and appreciate the ability of my mind to block out pain during the day. This is especially helpful as my pain is wildly unpredictable. I can go days or weeks without pain. I can experience pain every day and it can be relentless for an hour, a day, a month or many months. It comes and goes and flows over  me like water. For me, pain is a glacial process. It is present or not present. It is like a light switch. Pain is on or off. Hence I experience pain or pleasure in a visceral way. Thank you Mr. Bentham.

I set eyes upon Jeremy Bentham's body on display at the University College London in the late 1980s. Way back then, I had no pain. Frankly, his head was and remains gross. His body has been on display for more than 150 years. Here is proof in its preserved glory.


Bentham has been in the news the last week because his head is going to be on display for the first time in decades. Upon his death, Bentham wished his body would be put on display. Bentham was an atheist and did not believe in Christian burial practices. He wanted his body to be of use both in life and death or so the legend goes. While his body has been on display, his head has been deemed too grotesque for public consumption (a mummification error took place).  At University College London a new exhibit examining death and preservation is is being held and in the estimation of Subhadra Das, Curator of collections at University College London Culture, "I think Bentham would certainly have approved of his head going on public display. It's what he intended." I agree with this whole heartedly. What I am not so sure about is the fact samples of Bentham's DNA have been taken to test theories that he may or may not have had Autism or Aspergers. I am not opposed to testing ancient  DNA or the DNA of Bentham. I do wonder though why we have a morbid fascination with whether Bentham had Autism. Is it not enough he considered Christian burial practices to be "nonsense on stilts". Regardless, I agree with Das it is worth exploring what drove Bentham to donate his body and address the challenges of putting human remains material on display.

Back to neuropathic pain. For me burning is the most common sensation I feel. Imagine a cast iron hot poker being pressed against your skin as though you were being branded. That is what I feel. I also feel tingling, shooting, sharp, and jabbing pain. Prickling pain is also common. Pain reminds me I am alive. Pain also makes me appreciate pleasure. There is so much pleasure we humans overlook and dismiss. The feeling of a warm shower. The sensation of sun on your face. Being outside in frigid temperatures and feeling a bone chilling cold blow across your body. The pleasure of my burning shoulders after a long handcycle ride.  Sexual pleasure in all its breadth. The pleasure associated with food. The joys and pleasures of life are as bottomless and enduring as the pain I experience. Again, thank you Mr. Bentham for making me think. Maybe being awoken in pain at 2am is not such a bad thing.

Tuesday, September 12, 2017

Why Don't You Just Die

I had to do something inconsequential yesterday. I needed to go to the apartment building office where I live and put in a simple work request. I planned to do this at 9am shortly after the office opened. I went to the office in question at 4:30pm. I did not exit my apartment until late afternoon because I was overcome with anxiety. When one has a disability, going outside can be dangerous. I do not typically fear for my physical safety. I fear and dread what people will say to me. I feel as though I am a Martian living on the planet Earth and the Earthlings that surround me hate my existence. Worse, they have the means to easily destroy me. In New York, I was accustom to being on guard at all times. In Denver, I have become more relaxed--perhaps complacent. The routine hostility I encountered in gritty Syracuse is largely absent. The homeless have not harassed me in Denver.  No one has followed me. Not a single person has called me the anti-Christ. I have had some surly bus drivers and train conductors deploy lifts with obvious disdain. I have received the usual stares from strangers. I have had people inappropriately leap out of my way in fear. No one, however, has said anything truly rotten to me since I arrived in Denver. Last week that changed.

I was trying to get an RTD discount card available to people with a disability. To get such a card is exacting. Forms must be filled out perfectly. One must waive all rights to privacy in terms of medical records. The state of Colorado wants full access to any and all medical information. I am entitled to a discount but it comes at a cost that is not insignificant. A statement from a physician that I have a permanent disability is not adequate in this GOP dominated state. I must be examined by a physician. I am also required to go in person to an RTD office, be photographed, issued a discount card, and forgo my right to medical privacy. Despite the humiliation ritual involved, I remained in a good mood. I reminded myself that I live in the Denver suburbs and I am less than 30 minutes from downtown. Denver  is a major western city. I ride the train regularly and exit into Union Station. Cool cafes abound. The city is alive. I can walk to Coors Field and see a baseball game. Every type of food imaginable is readily available. Marijuana is legal. Bookstores abound. The city has a positive vibe and its diversity is wildly appealing to me.

Feeling good and waiting for the light to change so I can cross the street I feel eyes boring into my body. The hair on the back of my neck goes up. Oh no I think. I look to my right and see a well dressed business man in an expensive suit and tie. His highly polished black shoes and suit scream money. He is not flashy but rather exceptionally well dressed and looks like a master of the universe. About six feet tall he sneers at me in complete and utter disgust. Here it comes I think. He did not disappoint.

"Why don't you people just die? His head shakes: "What a waste of life". The light turns green and off he goes.

I have heard this sort of comment for the last forty years. Of course such a comment is not the norm. People only make this comment when I am alone and assumed to be an easy target. Such bigoted thoughts are not socially acceptable. However, alone at a corner, I am an easy target. Strangers feel empowered to be as cutting as humanly possible verbally and physically. There is no question in my mind this man and others wish I did not exist. My presence was an affront. This is a base form of ableism. I try to tell myself social progress has been made since I was paralyzed. I get on the bus and train without rancor. The physical environment is far more accessible than it once was. This line of thought feels delusional when a stranger tells me "Why Don't you just die". What is my recourse? I could call the police, the FBI or Department of Justice and report a hate crime. Hate crimes based on one's perceived or actual race, color, religion, national origin or gender are illegal. While hate crimes protections have existed since 1968 it was not until 2009 that the word disability was included. According to the FBI, of all the hate crimes reported in 2015 1.7% were disability based. If I tried to report this man I likely would be laughed at. The police have better things to do and I have no doubt any officer that would show up has no clue what ableism is. Given the current presidential administration, I know the DOJ will never act on a supposedly isolated incident.  As always, I know where I stand. Alone. My people, we crippled people, are about as disenfranchised as humanly possible. Report a hate a crime? Good luck with that.

More than 25 years post Americans with Disability Act and four decades of progressive legislation designed to empower people with a disability, disability based bigotry abounds. Disability based bigotry has taken a toll on me. Yesterday, it took me all day to work up the courage to walk outside my door, go down a hall way, use an elevator, and request a work order be created by the apartment building office. This most mundane chore required great deal of will power.

I for one will never succumb to disability based discrimination. I will continue to leave my home. I will get on trains, busses, and air planes. I will work, write, and teach. I will do the ordinary. I will live life to the fullest. None of this makes me special. I am certainly not inspiring. I am overcoming though. I am overcoming a hostile social environment in which a well dressed business man in a major American city feels it is perfectly acceptable to tell me I should "just die". A social tragedy took place in my estimation. The tragedy was not my existence or the fact I am a paralyzed man. The tragedy was crass bigotry freely expressed and free of any consequences.

Saturday, September 9, 2017

A Bodily Tune Up on the RTD

I have spent the majority of my life living in New York. While I consider myself a hardened New Yorker, I never truly felt I had a place to call home in the city or suburbia. In suburbia I was always the only wheelchair user in town. When I lived in Manhattan long ago, I was never welcomed. The subway system was impossible to access and getting on a bus was a battle. In the pre ADA era, my presence was decidedly unwelcome. New Yorkers being the people they are were not shy about letting me know I had no place in society. I was screamed at on a regular basis and more than once was spit on for getting on a bus. The net result is loneliness has been a life long companion.  I have always longed to live among my people. My people are the disenfranchised hard ass survivors who through bad luck or happenstance live with a  long term disability. The physical or mental malady does not matter. All those with an atypical body are welcome in my conception of the world. Give me  people with a host of mental illnesses, traumatic brain injury, spinal cord injury, amputees, the deaf and hard of hearing, those with any neurological condition etc. These are the people I gravitate toward. 

Since my arrival in the Denver area, I have largely relied upon mass transportation. Before I moved to Denver I knew the mass transportation system would be vastly superior to anything I had used in the past. Certain cities like Denver with a long history of disability activism excel at providing excellent and accessible mass transit. I spend a good portion of my day on various busses and trains. This prompts me to think about why I have always been drawn to mass transit. I think my attraction to mass transit is largely based on my back ground in anthropology. The life blood of the discipline is ethnography and participant observation. In anthropology one obtains "data" via experience. That "data" is gathered via ethnography--living among a people--and participant observation--doing what others one is studying do. When I walk out the door, I feel as though I am conducting an ethnography among hostile people. The people I interact with are the hordes of bipeds that for complex reasons find my existence objectionable. I am perpetually out of place. Social denigration is commonplace in large part because the social and constructed environment is not designed to be inclusive. The intolerant reaction to my existence takes a heavy toll on one's body and the manner in which I am willing to engage others. In trying to sort out why I feel different in Denver I turned to Erving Goffman whose seminal work on stigma and the social model of disability laid the foundation of disability studies. Goffman's work has stood the test of time and I cam across a rather obscure paper that was published after his death: "On Fieldwork" published in the Journal of Contemporary Ethnography circa 1989. He wrote: 

by subjecting yourself, your own body and your own personality, and your own social situation, to the set of contingencies that play upon a set of individuals, so that you can physically and ecologically penetrate their circle of response to their social situation . . . . So that you are close to them while they are responding to what life does to them. I feel that the way this is done is to not, of course, just listen to what they talk about, but to pick up on their minor grunts and groans . . . . You try to accept all of the desirable and undesirable things that are a feature of their life. That ‘tunes your body up’ and with your ‘tuned-up’ body and with the ecological right to be close to them (which you’ve obtained by one sneaky means or another), you are in a position to note their gestural, visual, bodily response to what’s going on around them and you’re empathetic enough— because you’ve been taking the same crap they’ve been taking—to sense what it is that they’re responding to. To me, that’s the core of observation. 

When one uses a wheelchair or has an obvious disability, one is always "tuned up". My social radar is never turned off. When I am on the bus or train I am on high alert at all times. As Goffman noted, if you are empathetic enough you can make sense of what people are responding to. No other social environment is as diverse and unpredictable as mass transit. The social exchanges I have had since moving to Denver fall into a few group composites:

Homeless People: Homeless people are often quick to ask me why I use a wheelchair and what I do for a living. I tell homeless people I am an anthropologist working in bioethics. I stated this just yesterday and a homeless man proceeded to tell me about a near fatal motorcycle crash he had that led to bankruptcy, opiate and alcohol addiction, and semi homeless life. He told me you want to see ethics fall by the wayside, go to the ER as a street person and seek health care. No health care will be provided as the first call is to the police to get you out of the ER. Every word uttered is considered a lie and no one has a heart. You can't so much as get a band aide. The bitterness he felt was palatable as was his angst. The man was a raw nerve of hurt.

Baseball Fans: The Colorado Rockies play at Coors Field and in August they have a had a few 1:10pm games. I have gone to a few games and the NY Mets cap I regularly wear has led to some interesting baseball related conversations. The social exchanges are disconcertingly normal.

New Age Healers: Non religious natural remedy health nut people in Denver are determined to heal me. These people are not shy about vitamin regimes as a cure for paralysis. These people often hand me their cards and are all too happy to tell me with a change in life style I would no longer need a wheelchair. With this group, I am mute. Polite but silent.

The Sob Story: People want to know why I am crippled. I am good at avoiding this question and shutting down this line of inquiry. However, many people who rudely inquire about paralysis are quick to share their tragic story. The story is always the same. Tragic accident followed by a miracle recovery.

Terminally Ill: This is a new group I have not had much experience with. At least six times in the last two months a person has sat near me on the train, asked me about paralysis and quickly rifts into a discussion about end of life. I find these conversations odd. Is it assumed that I am terminally ill because I use a wheelchair? Is the leaping off point simply my disability and the assumption I have been through the medical mill? Do I look like a doctor? I am told the diagnosis and the prospects for life which are usually quite dim. They then share their views on assisted living versus hospice care and how terrible it is to be a patient on a neurological floor. I am not at all sure how to respond to this group of people.

Needlessly Curious: When someone asks me why I am paralyzed more often than not I will ask the person why are they asking me that question. Once in a blue moon, the person will have an excellent reason for asking. The norm however is the stranger is idly curious. For these people I have no patience. I try to be polite and give of the body language that screams go away.

All of the above conversational experiences have a Goffmanesque quality. Anonymity is never possible when one has a significant and noticeable disability and you have the audacity to venture out in public. I must add a proviso here: one group of people do not engage me: other wheelchair users. Almost every time I use the train a fellow wheelchair user gets on and rarely do we get past the nod of the head stage. Oh but does that nod contain meaning! Sometimes I feel like a Knight. We are the hard ass survivors. We have endured. We have go through the social mill just to do the ordinary. It is with great pride that I am among my people. This has been the best move possible for one reason alone: the overwhelming sense of loneliness dissipates by the day. Now if the weather would turn cold I would be beside myself with joy.

Tuesday, August 22, 2017

Do Not Speak Ill of the Dead: Jerry Lewis

Jerry Lewis is dead.  Many are mourning his death. Every major newspaper in the nation published obituaries. As is the norm, praise is being heaped upon his life and career. Lewis, love him or hate him, was an important Hollywood figure. There is no question he was an influential comedian. In the Comedians Kliph Nesteroff wrote "The comic neuroses, the good and bad side, the funny, smiling side and brooding, angry, depressed side--Jerry Lewis had both of those. Whether he was aware of it or not, we frequently saw both sides of him on display". I never saw both sides of Jerry Lewis. I found his slap stick humor humorless. Even as a child his most famous film, The Nutty Professor, did not make me laugh. However, I will acknowledge humor is often hit or miss. At an intellectual level I understand why Lewis was famous and why he was fawned over much of his life. What I do not understand is why he struck me as such a miserable human being. He seemed mad at the world and I got the sense he enjoyed needlessly hurting others.

The reaction to Lewis death is twofold: the vast majority acknowledge his supposed brilliance, especially of the French, and his great influence in the comedy world. Another smaller group of people did not mourn his passing. For people with a disability, Lewis was openly despised. The reasons for this are not complex. Lewis hated people with a disability. That is he hated any person with a disability that had a sentient thought and questioned Lewis and his charitable work with the Muscular Dystrophy Association. Lewis raised hundreds of millions of dollars to "fight" MD. Despite this, he caused far more harm to the lives of people with a disability. None of this is news to anyone with a  passing interest in disability rights. Others far more articulate people have written about Lewis: Ben Mattlin, Mike Ervin and his sister Cris Matthews, Harriet Mcbride Johnson, Laura Hershey, and many others.

Lewis hatred of people with a disability was tied up in a mix of fear, pity, stigma, ignorance, and the belief he was doing good. The good he was doing was simple: he was going to raise money for the less fortunate. Who were the most unfortunate human being at the time Lewis was active? Children with disabilities who quickly became "Jerry's Kids". The MDA counted on Jerry Lewis to be a cash cow they happily embraced. Jerry Lewis used the MDA to demonstrate what a humanitarian he was. People that knew nothing about disability sucked up the saccharine sweet nectar via demeaning telethons while people with a disability simmered in silence. Jerry's Kids were made to look pathetic and pitiable--any easy thing to do prior to the idea people people with a disability had rights and were human beings. As Stephen Kuusisto wrote a days ago:

Lewis saw disability as most Americans of his time did—as an implacable thief, a menacing, unnameable dread. When Martin and Lewis began in showbiz the disabled were not generally out in public. Polio victims were kept out of sight. Any disabling condition was understood as a dreadful thing. Link: https://stephenkuusisto.com/2017/08/21/jerry-lewis-and-the-crippler/

Lewis association with the MDA came to an awkward and abrupt end in 2010. I don't know the inside story behind Lewis ouster but I sure would like to. What I do know is that people with a disability started striking back at Lewis in the late 1980s. The best description of an incipient disability based critique of Lewis can be found in Harriet Mcbride's Johnson's memoir Too Late to Die Young. Her chapter, "Honk if You Hate Telethons" is both funny and thought provoking.

In 1990 the flood gates of criticism flooded open after Lewis infamous article in Parade Magazine entitled "If I had Muscular Dystrophy". Link to reproduction of the article: http://www.cripcommentary.com/parade.html Even today the article is shockingly mean--it was vicious for no reason. Two quotes should suffice to get a sense of the deep anger and bigotry Lewis felt:

I don't usually take the time to think about "what if." Oh yes, there's the expression: "There but for the grace of God go I" is used in a variety of contexts, but rarely do people take a solid look from the outside in and see themselves as other than they are.
So I decided, after 41 years of battling this curse that attacks children of all ages and does it with 40 different ways to make its point (there are 40 different neuromuscular diseases), I would put myself in that chair ... that steel imprisonment that long has been deemed the dystrophic child's plight.
Let's start with what, for most of us, is a simple number of tasks just to get into the mainstream of everyday living ... like brushing our teeth, taking a shower, cutting our toenails, filing our fingernails, combing our hair, shaving, using makeup. All of that isn't even the tip of the iceberg. Example: Bathrooms aren't built in normal homes to accommodate a wheelchair (oh, in some cases people with money will rebuild and makes things easier for the child and themselves). Just getting through the bathroom door isn't all that's involved. Space is needed for a chair to turn, or for a child to be carried and dealt with out of the chair. It's still only the early hours of the day and already I am beginning to feel trapped and suffocated trying to visit that bathroom.

Being in a wheelchair makes you feel like everyone is whispering about you. I know there are many who couldn't care less and many who are so indifferent that it hurts -- not a great deal, but enough to notice.
I know the courage it takes to get on the court with other cripples and play wheelchair basketball, but I'm not as fortunate as they are, and I bet I'm in the majority. I'd like to play basketball like normal, healthy, vital, and energetic people. I really don't want the substitute. I just can't half-do anything -- either it's all the way, or forget it. That's a rough way to think in my position. When I sit back and think a little more rationally, I realize my life is half, so I must learn to do things halfway. I just have to learn to try to be good at being a half a person ... and get on with my life.
I may be a full human being in my heart and soul, yet I am still half a person, and I know I'll do well if I keep my priorities in order. You really cannot expect the outside world to assist you in more ways than they already do, and I'm most grateful for the help I receive. But I always have the feeling in the pit of my stomach that I want to scream out "Help!" Or,
"See what has happened to me!" Or, "Is anyone watching?" But those screams are usually muffled by the inner voice that tells me what to do and when, and tells me softly and strongly: "Be still ... Hush ... Drive quietly ... Try to make as few waves as possible.

Lewis truly felt children and adults with disabilities were charity cases. They had no right to expect equality. The constructed environment was not accessible. This was just the way it is and any accommodations were made out of the goodness of the non-disabled--the normal, healthy vital and energetic people. People with a disability were not human in Lewis estimation. They were trotted out and put on display once a year so that others, non disabled others, could feel better about themselves.

When I think of Jerry Lewis, I remember an angry difficult man. In 2016 he gave a reporter the most painful interview I can recall ever watching:


I am breaking an old taboo--speaking ill of the dead. I am however only speaking about one side of the man. My words are not about Lewis alone but of an era when all people with a disability had no rights. We people with a disability could not attend public school, get on a bus, train or plane. We were warehoused in institutions like the infamous Willowbrook Institution. The history of people with a disability is only just now being taught at some universities. American history and disability history are synonymous but few books like Kim E. Nielsen's A Disability History of the United States exist. Rather than harp on what a rotten person Jerry Lewis was, I instead think of him as a symbol of an era that is thankfully a thing of the past. A past that is grim and I mourn for an untold number of lives that were needlessly compromised. Jerry Lewis did not live in a vacuum. Millions of people gave money to the the MDA who likely shared the same views of disability that Lewis did. It is my hope we live in a more enlightened era but I find that impossible to believe after reading an article in Mother Jones about the future of genetically engineered children. The invention of CRISPR, a tool that allows scientists to change DNA sequences within a cell and hence edit the human genome could be used to eradicate a host of conditions such as Huntington Disease and Tay Sachs. Link:http://www.motherjones.com/politics/2017/08/a-future-of-genetically-engineered-children-is-closer-than-youd-think/ My first thought of course is if we eliminate a condition are we eliminating a people. That thought makes me shake in fear. People with a disability can be eliminated before they are born. A Gattica like existence is around the corner and I know people like me might no longer exist.

Wednesday, August 16, 2017

The New York Times and Assisted Suicide

About a week ago the New York Times published an opinion piece I can't get out of my mind. The title was provocative—“Should I let My Patients Die”.  Written by Jessica Nutik Zitter, a physician, she discusses end of life issues and specifically the law in California that empowers physicians to end the life of their patients. So called death with dignity laws, have been passed in five states. The New York Times position on assisted suicide is very clear.  For years the editorial board has been a staunch advocate of assisted suicide. Link: https://www.nytimes.com/2015/03/15/opinion/sunday/offering-a-choice-to-the-terminally-ill.html

In terms of assisted suicide, there is no pretense of objective journalism at the Times. The New York Times is far from alone because when it comes to end of life issues a major cultural shift has taken place in the last two decades. In the post Jack Kevorkian era, most major newspapers in the United States are in favor of assisted suicide. If polls are any indication, the majority of Americans support assisted suicide legislation. The problem, as I perceive it, is that the discussion of assisted suicide is reliant upon a simplistic notion that one should not die in pain and a person should be in control of how they die. This seems reasonable. Proponents of assisted suicide and legislatures rely upon the fact few people discuss end of life with their loved ones and physician in detail. Even fewer people read death with dignity legislation nor consider its larger implications. For well over twenty years those that advocate for assisted suicide or death with dignity as they phrase it are reliant on the implication of the phrase itself. Death with dignity implies that physician assisted suicide is the one and only way to insure a dignified death. This is patently false.  The public has been sold a false bill of goods.  There is the notion death with dignity legislation is all about pain—no person should die in agonizing pain. If one were faced with an agonizing death a person has the “right” or “control” of when to die. End of life is not this simple. People access assisted suicide because they fear a loss of autonomy and being a burden upon others.

The significant shift as I see it is cultural. There is a notion that people deserve a good death. What a good death is, I have no idea. But this phrase, a good death, is as misleading as death with dignity. A good death is now akin to a designer dress or enviable life style. Planned orchestrated deaths are the rage. What I find remarkable is even those that support assisted suicide legislation are concerned. For instance, Franklin G. Miller, a physician that supports assisted suicide legislation was disturbed by a long New York Times photo essay about a carefully scripted death.  In “At His Own Wake, Celebrating Life and the Gift of Death" Catherine Porter and photos by Lesley Davis lavish praise upon the end of John Shields life. There is no question the Canadian Shields led an interesting life. But that is not the point. The piece reads like a New York Times style section essay about a celebrity wedding. Like Miller, I found this essay deeply disturbing.  In the Hastings Center Bioethics Forum he wrote:

Presented to the readers, in lavish detail, as the “Gift of Death,” with a very appealing protagonist, this article romanticizes the death of John Shields.  More importantly, I see it as describing, and prescribing, a model for the good death in North America today. The article prominently features various quotes from Shields: “I think this is a mark of our humanity,”  “What could be more meaningful than planning for the end of your life?”  These are Shields’s own legitimate opinions, but I read them as being given a prescriptive force.
Physician-assisted death remains ethically controversial.  The end of life is an arena for diverging values.  Commitment to pluralism means recognizing a variety of good or legitimate ways to face death and dying.  Presenting the planned death of John Shields as a model for dying in our era uncritically places a premium on the choice and control of the sovereign individual.  Letting death happen, with the aid of palliative care, is no less good than making it happen.  We should beware of prescribing a particular form of “death with dignity” as a model for the end of life and not acknowledging other perspectives. Link: http://www.thehastingscenter.org/physician-assisted-death-become-good-death/

I understand talking about death is hard. Believe me I get it—in recent years I have had to deal with the death of a parent, siblings, and a beloved pet. I have also had to face my own mortality when I had a heart attack in June. We do not need assisted suicide legislation. What we need is a nuanced discussion of end of life issues and options. Here Miller and I are in agreement despite the fact we are on opposite sides of the debate about assisted suicide.  Death with dignity need not involve assisted suicide yet that is exactly what one is led to believe if reliant on mainstream news outlets such as the New York Times.

Here I return to the New York Times opinion that I cannot get out of my mind. At first glance “Should I let My Patients Die” appears to be a nuanced view by a physician that has struggled with the new death with dignity law in California. Jessica Nutik Zitter, author of Extreme Measures: Finding a Better Path to End of Life is a critical care and palliative medicine doctor.  In her opinion Americans die badly and many people needlessly suffer at the end of life in intensive care units. This is not new ground. What makes her opinion different is how she hooks the reader in the first paragraph of her essay: she tells a story about a colleague who tapped her on the shoulder and said, “I have a patient who is asking about the End of Life Option Act”…”Can we even do that here”. For half the essay Zitter plays the part of objective commentator and insider. It is not until she wrote about her own family, specifically her mother, that her real feelings become evident, as does her ableist bigotry.  After discussing the first patient who asked her about assisted suicide she admitted she wanted this option for her family.  She wrote:

I have seen much suffering around death. In m experience, most of the pain can be managed by expert care teams focusing on symptom management and family support. But not all. My mother is profoundly claustrophobic. I can imagine her terror if she were to develop Lou Gehrig’ disease, which progressively immobilizes patients while their cognitive faculties remain largely intact. For my mother, this would be a fate worse than death.

Replace the condition ALS with any other neurological calamity as a means of justifying death with dignity. This indicates just how deeply ableism is entrenched into the fabric of society. Alzheimer’s is a fate worse than death. Quadriplegia is a fate worse than death. Multiple Sclerosis is a fate worse than death. Muscular Dystrophy is a fate worse than death.  Parkinson’s disease is a fate worse than death. Yes, the medical model of disability is quite clear—many conditions people live with for decades if not their entire life is a fate worse than death. I know this from personal experience; some think my existence is indeed a fate worse then death for strangers and more than one physician have expressed this to me directly.

Zitter goes on to state she does not feel comfortable shortening the life of any patient and wonders if this makes her a hypocrite. In search of an answer she turned to the “defacto specialist in our area on this issue for counsel. Dr. Lonny Shavelson, an emergency medicine and primary care physician in Northern California, who has been grappling with the subject for many years.” I find this is a remarkably unusual choice. Shavelson operates an unorthodox medical practice, Bay Area End of Life Options, that has gotten quite a bit of attention in the last year. Shavelson specializes in consulting with patients and physicians who are deemed terminally ill and are interested in or have requested assisted suicide in the state of California. This sort of practice is well out of the norm even in states where assisted suicide is legal. To be clear: in California it is legal to request assisted suicide if one is diagnosed as terminally ill, is able to self administer a lethal prescription, and retains the mental capacity to make such a decision.  For more on the law here is a link: https://leginfo.legislature.ca.gov/faces/billHistoryClient.xhtml?bill_id=201520162AB15

Shavelson is not your average physician. He is coauthor of “Physician-Hastened Death” guidelines published in the Western Journal of Medicine and has written amicus briefs for the Supreme Court (1996 Quill vs. Vacco case).  Shavelson, like many, believes in the idea of a “good death” and is a staunch advocate of assisted suicide legislation. In A Chosen Death: The Dying Confront Assisted Suicide Shavelson wrote about “death anarchy” and came to believe assisted suicide had to be legalized and regulated. In Forbes he stated: what I found during the 1990s was a horror show--people hoarding medicine, afraid of how they were going to die; doctors secretly assisting people in dying; family members tortured by the memory of helping someone in their family die. It was the equivalent of back alley abortions. I was calling it dark bedroom suicide”.  Link: https://www.forbes.com/sites/nextavenue/2016/06/09/the-good-death-doctor-ready-for-californias-new-law/#5628c1ac5b3e


For Shavelson, assisted suicide “is not about being a death doctor. This is about being a good death doctor”. This sort of double speak reminds me of Jack Kevorkian. Dr. Death as he was called is largely forgotten (college students do not even know who Kevorkian was).  In his place, physicians across the nation are calling for or establishing protocols, procedures and outcome measurements in states that have passed assisted suicide legislation. Thus Zitter argues that medical procedures all require training and thinks the process of dying is no different.  Zitter wants physicians specifically trained to end the lives of patients.  I shake my head in wonder. All week I have come back to the flip answer to the question “Should I Help My Patients Die”. The answer is an obvious no.  Hastening the death of others is ethically objectionable.  How we mange end of life, that is the process of death, speaks volumes about who we are as human beings. I am worried about the future of humanity for I believe life is precious. 

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: https://theacpa.org/condition/neuropathic-pain
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: 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.