A Bad Day: Suggestions Welcome

Last night or early this morning depending on one's perception of time my atypical paralyzed body began misbehaving. This is the worst my body has felt in over twenty years. Like many people with a spinal cord injury, I experience, mild, moderate, and severe spasms. The variation in my spasticity ranges wildly and my legs always have a lot of tone. Over time I have learned to adapt and use my spasticity. I also know what makes my spasticity increase or decrease. Cold, think icy temperatures, and movement help the most. I am most comfortable outdoors moving in the cold. Skiing is awesome as is any outdoor activity such as hiking or kayaking. At the opposite side of spectrum heat and a lack of movement sharply increase my tone and spasticity. Regardless of the day I need to move. I cannot be sedentary for too long. This is not good for an academic but as I wrote I have adapted.

Today has been bad and I am truly miserable. For the last seven or eight hours my right hip where my wound was is on fire. Obviously I checked my skin; it is fine. My legs are in near total spasm.  My feet are arched up at a strange angle. I have severe rolling spasms in my torso. They run up and down my stomach in waves--nonstop waves since about 3:30AM. It is creepy to watch my stomach. It reminds me of when my wife was near to giving birth to my son. Her entire belly could change shape. I truly hate the sensation and spasms in my stomach. I cannot eat or drink without feeling sick. At this point I am very sore. My back hurts because I cannot sit normally. Muscles that are not normally taxed are being taxed in the extreme. My over developed lats are tight as a drum. I tried all the little tricks paralyzed people learn over time to decrease my spasms. I took an ice cold bath. Did not work. I took a very cold shower. Did not work. I went for a walk with Kate over bumpy terrain. Did not work. I pushed over grass and through an outdoor sprinkler. Did not work. I cannot drink alcohol because it is too hot and will only make me feel sick. I put cold ice wrapped towels on and off my legs. Did not work. Forget medication. I took baclofen for years--the go to drug for spasticity. I am not sure which was more trouble--spasticity or baclofen. Most other medications for spasms are largely ineffectual. I should amend that statement; most legal medications are ineffectual. Pot as many people can attest has a profound impact on spasticity. My legs turn to butter if I smoke pot. It is really amazing the instant impact pot has on spasms. The problem is pot is not legal in New York. I will not break the law. With my luck I will light up a joint (as if I could find one) and the local cops will drive by. The world has little sympathy for middle aged white men in suburbia who smoke dope. I cannot and will not take the risk. I support the effort to legalize pot but that is another story entirely.

Here I sit in a weird situation that demonstrates what we know about neurology, specifically spasticity, can fit into a thimble. How can one create a drug for spasticity when it ranges wildly from person to person. Spasms are unpredictable and today have pretty much precluded me from getting anything done.  I have modest wishes now--I just want the stomach spasms to lessen. They bother me and can even make breathing uncomfortable if they extend up to the peak of my level of paralysis. This has happened a few times in the last few hours. In short, I am a mess. Spasms suck. Yup, that is my Ivy League PhD level of analysis. Spasms suck. So anyone with any ideas, legal ideas, I am all ears.

I do have one idea. A big walk in freezer might help relieve my spasms. This raises my level of desperation to a new level and creates a strange possible social dynamic.  Can you imagine this? I walk into BJs or Costco and ask to see the manager. Some poor over worked guy will ask what can I do for you. So there I am in shorts and a t-shirt. Can I go into your walk in freezer for an hour or so to relieve my spasticity? I am not sure what the reaction would be but I would wager my request would be a first.

How Far Does Being Nice Get You?

The answer to the title of this post is not far. Why do you have to be such a hard ass all the time is a common question posed by people who read my blog. Recently I have been getting a lot of this type of email and similar comments on various posts. I struggle to answer this question. The why are you a hard ass question I get. I am a hard ass in many ways and I do my best to respond. Those readers who angrily maintain I am a bitter asshole are just wrong. The people that level this charge utterly miss the point of my writing. I suspect I am deemed a bitter asshole because I do not aspire to be "normal". I also have nothing nice to say about the cure industry.  My lack of interest in normality and cure makes me persona non grata in the estimation of some. As to anger, I plead guilty. I am angry 35 years post injury. My anger has not one thing to do with my body.  My anger is not directed at any single individual or biased organization. I direct my anger outward in a healthy and what I hope is a constructive manner. I am angered by injustice, social and economic inequity, and the violation of civil rights. I am angry people with a disability twenty plus years after the ADA still encounter needless social and attitudinal barriers. My anger is never about me. My anger is designed to do one thing: prompt social change in terms of disability rights so the next person with a disability does not experience the same level of discrimination I did. Like Ed Roberts, I see nothing wrong with anger. When channeled in an appropriate direction anger can change the fabric of society. Look what MADD (Mothers Against Drunk Driving) has accomplished, a movement that was started by angry mothers whose children tragically died. Within disability rights a few angry activists in Denver spawned a national movement to get lifts on buses. Fast forward to today: I easily (albeit slowly) board a bus and navigate New York City. A few angry activists in Denver are responsible for sweeping change that has benefited millions of people nationwide.

Readers who think I could be nicer have a point. I suppose it is possible to be too cranky. So in an effort to be not such a bad cripple I will write something nice.  Over the last two years or so I have occasionally seen the name of a paralyzed woman Carolyn Pioro. Ms. Pioro was a circus performer and competitive athlete until she fell from a flying trapeze and experienced a spinal cord injury. She is a quadriplegic. When I read about Pioro, it was usually with reference to fashion. As someone with a body that is extremely crooked finding clothes that do not need tailoring is not easy. Hence I look at clothing websites that are designed for people with a disability. My search has not as yet resulted in any good finds. But I did come across Pioro's name who struck me as a smart woman. Ms. Piorio is an attractive and fashionable young woman who seems to have a great sense of style post injury. I know nothing about fashion though I suspect it is difficult for women to find fashionable wheelchair appropriate clothing Regardless, this is where my knowledge of Pioro began and ended until yesterday. 

At Bloom, an interesting website about disability, had a short post about Pioro on May 27 (http://bloom-parentingkidswithdisabilities.blogspot.com/2013/05/i-have-to-let-go-of-my-past.html ). Ms. Pioro is giving a talk in Toronto June 6. The title of Pioro's talk is "I Have to Let Go of My Past". This notice led me to read an excellent essay by Pioro in Chatelaine (http://www.chatelaine.com/living/real-life-stories/carolyn-pioro-on-life-after-a-devastating-spinal-cord-accident/). Pioro gives a gripping account of her accident in 2005. What struck me was not the circumstances of her injury but her reaction to it. In a section entitled Enforced Isolation Pioro wrote after her injury:

I had very few visitors during my two months in intensive care. I kept it that way on purpose. I knew that I wasn’t going to beat this paralysis thing, that I just needed my condition as a quadriplegic to stabilize before I could move on to whatever was next. I allowed only my mom, dad, brother and soon-to-be-sister-in-law and two close friends from the restaurant I had been working at to come see me, and what they saw looked pretty grim.

Pioro went on to note she permitted only six visitors:

Those six amazing people from my innermost circle came to see me, bringing comfort and normalcy with each visit. My dad would read me the newspaper; my mom applied hand lotion, as the rough calluses I had built up were beginning to disappear. My most loyal friend from work, David, would come in twice a day and talk about the goings-on at the restaurant and really just anything, even something as trivial as his neighbour stealing his garbage bins. Since the breathing tube still made it impossible to speak, having someone to listen to, someone to sit beside me, was exactly what I needed.

To me, this is a perfectly logical way to handle a sudden paralyzing injury. Establish medical stability. Allow precious few people to visit while hospitalized and as the body heals consider how one can move forward. There was no talk of cure or suicide. She was forward thinking at a time of great stress and angst. And Pioro did what I did as do the vast majority of people who experience a devastating spinal cord injury. She worked hard and learned. She learned how to direct her care. She learned how to instruct people to do mundane things such as dress her, clean her body, brush her teeth and manage her bowel and bladder routine. She learned how to use a head controlled wheelchair. None of this is easy and like countless others realized what it is like to live with a life long disability. Unlike in the United States, Pioro received extensive rehabilitation (eight months). She was I assume well prepared for life with a spinal cord injury. Reality hit home ten months after her injury. She moved into an assisted living residence. This sounds nice. It was not. She wrote:

in reality, a sketchy high-rise building — plagued with violence, drug dealing, bedbugs and cockroaches. There I received 24-hour assistance from a staff of personal-support workers. I met a handful of remarkable women who really did ‘get’ the job and were genuinely helpful. Unfortunately, they were not the norm. The rest treated my apartment solely as their workplace and me as an inconvenience that got in the way of their watching The View.
One morning I asked to put on a crisp white shirt that had little hooks and eyes and a skirt with a long double zipper. My attendant mumbled under her breath the entire time she helped me and afterwards asked, “What are you getting so dressed up for anyway? It’s not like you have a date.” Later, she filed a complaint stating that my clothing had too many hooks, clasps and time-consuming accessories. Staff members were afraid of straining or spraining their hands and wrists while assisting me. I’m not sure what made me feel worse: the dig about dating or the fact that someone whose role it was to act as my hands would carry out her job in such a hurtful way. I was left feeling crumpled. Being someone who loved fashion, I saw my life heading into an abyss of yoga pants, sweatshirts and Crocs.

Welcome to the world of disability. What a shock this is; not one's disability but the social and practical reaction to it. This is a staggering fall in terms of how others value your existence. It can be and is too often a crushing experience. An untold number of lives have been destroyed. It takes great inner strength and depth of character to know others, in some cases highly educated others, believe your life has no value. Worse, your existence is an economic drain on the system and people that experience such a devastating injury should die. Paging Peter Singer. 

The best part of the essay was the closing section, Hope By Degrees. 

What hope is there for me and the estimated 86,000 Canadians living with a spinal cord injury? Medical advancements are being made, but there’s still so far to go. I would be lying if I told you I’m not gutted by the fact that my dad is never going to walk me down the aisle; I’ll never hold a niece or nephew or measure my hand against my mom’s as we used to do. Would I trade my human soul for working cyborg parts? In a mechanical heartbeat, yes. I've lost a lot of friends since the accident, certainly not because they’re cruel and unkind, but our lives are just so very different now. I’m often asked — rather incredulously — how it is that I wish to succeed in digital journalism and publishing, yet I don’t even have a Facebook account. Although I think Facebook is an incredibly useful tool for all facets of media, for me personally it’s not a good fit. How best to describe what it’s like lurking on Facebook? It feels as though my lungs are slowly filling with warm water, and I’m drowning. I’m reminded  of how old friends and ex-boyfriends are travelling, getting married, having babies and living out their lives in ways I had assumed I would. To stay afloat and to have a future, I have to let go of my past. 
For me, it’s not going to get better, but it will get easier. I’m still as reluctant to write... You see, when there’s just one thing and one thing only that you can do to make your mark in the world and create a career, it can be deadly scary. But I’ll continue working, editing and, yes, even writing. I will strive to make my voice as strong as my body once was.

I deeply regret the fact I will not be able to attend Pioro's talk. For me, 35 years post injury it brings me great joy that people like Pioro get it. Getting it means life before and after spinal cord injury is radically different. Life is not better or worse but rather just a continuum of expereinces. One could compare a spinal cord injury to other life changing events: marriage, becoming a parent, getting divorced, or death. All are life altering events that require to some degree a complete and radical reinvention of the self (I use self in a Goffmanesque way).  For those that experience a spinal cord injury, the reinvention process after injury is highly visible and accompanied by a stigmatized identity. It is not the disability itself that is a shock to the system but rather the social response to a paralyzed body. I failed to understand the stigma associated with disability in 1978. I fail to understand stigma in 2013. Forty years of progressive legislation and social advancement and I still find myself educating people about disability. Some days I am inspired to change the world one person at a time. Other days, an ordinary day like today, I will not leave my home because I simply cannot face the a hostile world. Thankfully these bad days are rare and my labrador Kate is thrilled to have me all to her own. 

I Struck a Chord: Inaccessible Doctor Offices Part II

Wow, my last post really struck a chord. I have gotten dozens of emails from people who have experienced a multitude of problems accessing the health care system in general and physician offices in particular. These emails have made me retrospective. Is accessing the health care system really that problematic? The short answer is yes. At issue though has progress been made? Again, the short answer is yes. This yes is conditional. Physically barriers, though plentiful, are not as bad as they once were. As a kid I spent much of my childhood in the famed Columbia University Babies Hospital. There were steps to enter the hospital. To access Babies hospital my parents and I would go into the medical center via the emergency room on 168th and Broadway. This could be an eventful at any time and for a naive boy from suburbia I got a real education in diversity going through the ER. Today, Babies Hospital is very accessible and the patient rooms on the neurological floor are nothing short of wonderful. Times have changed drmatically. What has not changed is the cultural response to disability. Disability remains deeply stigmatizing.

I looked at the New York Times article again this morning. The number of comments has nearly doubled and there continues to a gross lack of understanding. People just do not get disability. Disability is first and foremost a social problem that is accompanied by unique medical concerns. Discrimination is very real. Discrimination within the health care system is rampant. If the emails I received are any indication, people with a disability routinely encounter blatant discrimination. The emails I received prompted me to wonder down memory lane. Two thoughts dominated my retrospective thoughts: first, I encountered gross bias as a parent with a disability when accessing health care in an emergency setting for my son. While my son's pediatrician was wonderful, ER staff were routinely hostile at every hospital I entered. Virtually every time I took my so to the ER I encountered outright hostility. My ability to parent my son was openly questioned by one and all. I still seethe over this and am comforted by the fact parents with a SCI report such hostility is out of the norm. Bias exists but it is not as direct as what I experienced. Instead of questioning a parent with a disability directly it is not uncommon for an ER physician to contact the child's pediatrician. This call is made to insure parental competency not inquire about the health of the child. Second, I encountered multiple forms of discrimination when accessing routine health care. When my son was small I spilled a small pot of boiling water on my lap. I had first and second degree burns on my thighs. ER care was excellent but I had a great deal of trouble with my follow up care. Given the importance of skin integrity, I was told to see a top notch physician who specialized in burn treatment. I tried to make an appointment but was refused. I was told the physician does not see paralyzed people. This out right refusal to treat a person with a disability is no uncommon. 

I am sure a skeptic would argue that I am exaggerating. Really, how bad can it be?  Let me provide a few examples. 

I had to get a urine analysis and culture done. A mundane test. I was told to go to a lab near my home. Knowing most labs are not accessible I called about wheelchair access. The four labs closest to my home were not accessible. It took multiple phone calls and about half a day on hold to get this information. I eventually found an accessible lab 25 miles from my house (the closest non accessible lab was two miles away). While I could enter the building to this lab the bathroom was not accessible. I had to exit the building, find an obscure location to urinate in a sterile cup. 

I saw my internist recently. He ordered blood tests. I went to the lab in the same building as his office. I waited like anyone else in a cramped waiting room. After a short wait I was escorted to the treatment area.  It was clear every little booth occupied by a lab tech was not accessible. A major discussion ensued. I could have my blood drawn in the hallway or wait until an accessible treatment room was found. My blood was drawn in a hallway with people passing by. 

The two examples above indicate the range of discrimination--it could be a physical barrier or a physician that simply refuses to see paralyzed people. My problems accessing health care are relatively minor in comparison to people with a higher level SCI. Quadriplegics in my estimation encounter the most problems. Those that use a power wheelchair take up a lot of space and cannot slip though narrow doorways like I can. Quadriplegics need help with things like dressing and transfers. This makes the most basic of tests highly problematic. One story related to me by Theresa Mackay (an Australian) about her husband Dan is indicative of the sort of experience quadriplegics encounter. Mackay wrote that Dan needed an IVP. This is a simple procedure. But things are not so simple when it it is not possible to independently transfer from a wheelchair. Dan contacted the facility where the test had been done before and noted he was a quadriplegic. He was told to call another facility because he could not be accommodated. Again he explained he was a quadriplegic and was told if he brought a "carer" he could be accommodated. Dan also spoke to the radiologist and was assured he would not encounter any problems. He explained that his wife could lift his legs but could not transfer him by herself. Again, he was assured that a bed could be lowered and he could be transferred. Mackay wrote that on the day of the test

We were shown into the room for the IVP. After a while we were told that they would not be able to lift my husband. Don explained that he had been told it would be okay by the Radiologist. The two people speaking to us appeared not to believe Don.

 I know for sure exactly what the conversations he had on the phone were as he uses a “Hands Free” phone and I heard both sides of the call he made. They went outside the room and we were left again. They returned and reinforced their stand that they could not lift. Much of the conversation took place with one of them talking to Don from behind his head, where he couldn’t see her. Finally he asked her to please stand in front of him so he could speak to both of them together.

 All the time this was happening we were made to feel very uncomfortable as if somehow it was all our fault. We were told we would have to leave, and make another booking at the Base Hospital. Don suggested as it was their mistake that it would be easier to ask someone to come in to help lift from one of the other branches, a couple of minutes away. He was told that that would be taking them away from what they were doing.

We said that we would not be leaving the room till the IVP was completed. They went outside again.

 Left in the room for some time, finally we called an acquaintance and her husband and asked could they please help us out. This they did and finally Don was lifted to the table, with not one finger of help from Radiology staff, who stood back and watched.

 We had to do this in reverse when the IVP was completed, which entailed phoning up the lady and her son, as she had had to drive her husband to work in the meantime. Again not one finger was lifted to help us at all and no body seemed to have a clue what to do... My husband was patronised dreadfully. I was very angry with the demeaning treatment of my husband.

I can readily envision this incident taking place in virtually any country or in any hospital in the industrialized world. Like Therese Mackay, this incident angers me. I am angry because it was needlessly dehumanizing.  I am not sure when or if the situation will improve. We are now 23 years post ADA and as I have stated many times the social mandate to enforce the law is absent. Part of the Affordable Care Act will require new diagnostic equipment be made accessible to people with physical disabilities. On paper this is a great idea--especially since the American population is rapidly aging. The reality I suspect will be very different. If the ADA is any guide, hospitals and health care facilities will go out of their way to avoid compliance. Thus the solution is not to be found with more legislation or more laws. The solution revolves around building a strong political coalition of people with a disability. This coalition must connect with other political groups and advocate for inclusion from a position of power. Until this happens incidents that were related to me will remain all too common. And I for one find this unacceptable.