Stuck in the Doldrums

This is the eight week I have been unable to get out of bed. It has been six days since I was at wound care. I will be at wound care in eight days. A wound care specialist comes to my house Monday, Wednesday and Friday. I get up at 8 or 9AM. I have tea and fruit or breakfast, I eat lunch at noon, dinner at 6PM. This schedule is set in stone, deviations rare. I live in short an exceedingly dull, routine life. I despise this schedule and my temporary dependence. I feel as though my life is crushing to my spirit. I have trouble concentrating and overcome by a sense of hopelessness. I thus feel very much like a sailor from an era gone by that was stuck in the doldrums. No wind equaled no power. No power equaled no progress. I am likewise powerless though healing.

I suspect I am experiencing what a marathoner goes through half way through a race. I am guessing my wounds are at the half way point to being healed. I know the worst is behind me. My mind knows this but my heart is a different matter. My heart is filled with woe. Gosh, what a fucking baby I am. I am blessed with a great family and while I complain about insurance I did learn my entire hospital stay was covered--minus $160 for the television. Without this coverage I would be broke--hence health insurance in this country has become house and bankruptcy insurance. This knowledge does not make me feel better. I know I am the unusual paralyzed person. I have adequate insurance and enough work. I have a large family that provides economic help when needed, as in helping pay for uncovered medical expenses. These are luxuries few other people enjoy. How then do I have the right to feel the way I do? I simply don't. I tell this to myself again and again. Sometimes it helps and sometimes it does not. Today such a mantra is not working. Nothing is helping aside from posting these words on the internet. What a weird world we occupy. Here I am alone in front of a machine, utterly reliant on technology. Yet, what do I miss? Humanity, ah the dialectics of modern social life.

Assisted Suicide: Not an Abstract Issue

Two days ago I read a story in the local newspaper about the suicide of a mother and daughter. The people that died, Nejla Akkoc, age 71, and her daughter, Ayshe Akkoc, age 31, died in White Plains, N.Y. What makes this double suicide of interest to me is the fact the daughter, Ayshe had cerebral palsy. Based on news reports her mother was her primary care giver. The mother had also recently been diagnosed with terminal cancer. The apparent reason for the joint suicide is the mother was concerned about who would care for her daughter after her death. This is shocking, deeply distressing and provides ample evidence care giving for people with a disability is a profound and in some cases a life threatening problem. Given my current dependency, albeit temporary, on my family this story has been stuck in my mind. I have lost much sleep since I read the story. According to news reports, a suicide note was found by the police. Apparently emails were sent to family members and both bodies were discovered in the early morning by the police. The typed note, written by Nela Akkoc, the mother, described a lifetime of "hardships" and a belief a cure for cerebral palsy would never be found. My reaction to this why? Why focus on a cure? Why were the "hardships" of disability so overwhelming that it led to a double suicide? I surely do not know the details of the mother and daughter respective lives but I have no doubt their needless deaths are a social failure. Why was a mother driven to kill herself and her 31 year old daughter? Surely social services were available to support the daughter? Or are they available in this era of draconian budget cuts. And who is most likely to suffer when it comes to budget cuts? People without a voice, people like those with a disability.

How did these people die? With the help of the Final Exit Network or at least the literature they produce. It is not at all clear if the Akkocs sought out the "help" of the Final Exit Network. Newspaper reports mention the police found the book, The Final Exit, by Derek Humphrey published in 1992 and revised in 2005 to include the helium bag method of suicide--the way Akkoc's killed themselves. I for one would like to know exactly to what degree the Final Exit Network was or was not involved. Here I must have faith in the police department charged with investigating the deaths. News reports all state people familiar with the case consider it a sad case--disturbing at many levels. But aside from being sad I think the death of Ayshe Akkoc was preventable. I cannot help but speculate what would drive a healthy 31 year old person to end their life. Was she dependent upon her mother for all her needs? If so, why, why was she dependent upon a single care giver, an elderly person and her mother? In addition, who was the primary mover in the decision to end their lives? I assume the police are doing their best to sort all this out but know they can do nothing to prevent future people from ending their lives. And who is at risk? People with disabilities, elderly, and terminally ill. These populations can be found in every community in the country--and I firmly fit in the at risk category. What separates me from the Akkoc family is an utter rejection of ableist beliefs that dominate our society. That rejection also includes my family who are currently sacrificing much to be my sole caregivers. To them I owe a great debt and can relate to the angst Ayshe Akkoc must have faced knowing her mother and caregiver was terminally ill. Surely she must have been worried about her mother's fate as well as her own. Such a symbiotic relationship is both effective and dangerous. To me it highlights, we as a society must do far more to support people with disabilities.

What bothers me, keeps me awake at night, is the knowledge that I have the same legal rights as Ms. Akkoc did. What separates us was our response to disability based bias. I utterly reject dominate notions associated with disability as does my family and many friends. Sadly, for Ms. Akkoc into the void of social support we can find groups such as the Final Exit Network. Perhaps they were involved and perhaps they were not. But they did produce a book that is little more than a how to manual for suicide. I simply wish a how to caregiver manual of equal quality was available for people such as Ms. Akkoc that want to live and need basic care giving. Where I wonder is the support for people with disabilities? Based on my recent experiences, such support is grossly inadequate and the health car system we have is hopelessly flawed. Most reasonable people, aside from Tea Party extremists, accept the system is flawed. Despite multiple flaws, the Obama administration is trying to change the way health care and care giving is delivered but it is an uphill battle. For real change to take place we need the social demand. To date this is lacking and as a result I argue we need a social revolution. A revolution that acknowledges people like me and Ms. Akkoc have rights, rights that include care giving when needed.

Wound Care Day: A Roller Coaster

This is a tough entry to write. I was at wound care which means I got to sit up in my wheelchair and leave not only the living room where I spend every minute of the day but leave the house as well. In a matter of a few words, getting up and out was utter joy. Bliss in many ways. It was also sensory over load--trees, fresh air, my dog, a car ride, moving independently, etc. This is all great--and the news from wound care was equally wonderful. Both wounds look awesome or as the nurse put it dryly "I am responding well to the therapy". The doctor classified me as a poster child for patient compliance. I have nothing to complain about--I really am healing and truly believe I am going to heal. By heal I mean I believe I will get better and return to normal. While I knew this in theory I now believe in fact. I can foresee the day when I will return to normal. I hope this return to normalcy takes place this year--as in before Xmas. This has been my stated goal and for the first time the surgeon who debrided the wounds agrees.

If I am filled with nothing but good news why is this entry so hard to write. Simple: I cannot stop from crying. By the time I got home I was exhausted. I was just physically spent. Months in bed is taking a toll. I am weak, shockingly out of shape. I get a bit dizzy when sitting, cannot push up a slight incline of a few hundred feet. Worse yet I had to go back to bed knowing it will be another two weeks before I get back up. I am tired, I am sick of looking at my ceiling, and I want out. I wan my life back. I know this is not going to happen this month, November and possibly even December. Even then it will take me time to regain all the strength I have lost. Of course I lift light weights and do as much as I can in bed but it is not nearly enough. I am overwhelmed by my loss of freedom, independence and any semblance of my previous independent life. It seems like a life time since I last kayaked or went for a walk with my dog. I am just devastated--so powerfully sad to be in bed and back to a very dull routine. even writing this I feel terrible. Many of my paralyzed peers would be far worse off--in a nursing home. I escaped this fate but remain in tears. Gosh, this has been a long haul and I have months to go yet. I will make it but I had no clue as to how hard this would be emotionally and how I would waste away physically. Ah, denial it is a very effective coping mechanism.

I hope I can get out of this deep emotional morass soon. I cannot give in to depression and feeling sorry for myself. This is destructive at multiple levels. I should have known today would be an emotional roller coaster. I knew getting up would be a dream like but did not anticipate the backlash. And the backlash is fierce. Perhaps in all this I am learning something. Women have told me a good cry makes them feel better--a notion I never could grasp. Today, I think I may get this. I may not feel better yet but at least writing these words have helped.

How Not To Lose Your Mind

I will be going to wound care Thursday. Unlike my first experience when I was extremely worried before my appointment, this week I eagerly look forward to wound care. In large part I am eager to go to wound care because I get to sit up. Of course my sitting is limited, severely limited in fact, but it is sitting. I get to leave my living room, breath fresh air, get in a car (though lying down in the back) and see trees, cars, and other humans. I get to push myself from the hospital entrance to the wound care center. Again, this may not sound like much but when you are stuck in bed all day for weeks on end this short foray into the real world is liberating albeit brief and limited.

So what do I do to keep myself from going nuts? The usual helps--reading, writing, surfing the internet, watching television at night. Helping me somewhat is the start of the hockey season--I am a die hard NY Ranger fan and watch every game humanly possible. But I have added a twist to the above coping methods. I bought a gaming console--an XBOX 360 and am playing with my son's games. This is a great time consuming distraction. Yet I worry if I have lost my mind. I think of the games made for the XBOX as kid stuff but I must confess I find the Halo series of games addictive. I don't play for hours on end as my son did in middle school but I sure do enjoy shooting aliens for some unknown reason. I also rationalize that I am bad at the games I play. My son plays on the legendary level while I am content at easy. The difference between the two is stark. Yet, here I am wondering if my mind will turn to mush if I keep playing XBOX. Am I doomed? Is my finely tuned mind, replete with PhD from an Ivy League school being wasted? Can I accept the XBOX as nothing more than a temporary solution to my current social and physical isolation? Am I just rationalizing in an effort to justify what might not be age appropriate gaming? Or am I close minded? Should I accept gaming as part of modern life and an acceptable outlet for a person of an age? I posed these questions to my son who sighed heavily and said "Dad, it is okay to have fun. You do not need to intellectualize everything you do". Now that was an answer that I liked.

Me and My Wheelchair: A Love Story

Every morning I wake up my black lab greets me with great enthusiasm bordering on a giant celebration. Tail waging, excitement coursing through every fiber of her body she lets me pet her head for a while. She then looks at me, directs her attention to my wheelchair and looks back at me. No doubt she is thinking "let's go have fun"--get up and we can play ball. Sadly, I disappoint her and me every morning. This little ritual I play out with my lab makes me miss my wheelchair--it is a visceral pain. I am in some ways in mourning. I miss my wheelchair, I miss the power it gives me to be independent. I miss the feel of upholstery against my back. I miss pushing against the tires and the intimate knowledge I have as to how I can direct it's forward thrust. Why I even miss the dirt I collect during the day on the wheelchair frame-an absence my lab misses as my tires clearly pick up smells that are utterly fascinating. I miss watching a scary movie and the way I slightly rock back and forth. I could go on but I miss my wheelchair more than anyone can imagine. Sure some other wheelchair users will get my sense of loss, people like Simi Linton who in my Body Politic wrote about her "cherry red" power wheelchair she named Rufus.

As I grimly greeted another day bed bound, I thought how many people are there in the world that I could share my views with. Not many, precious few in fact. Certainly not the average American. Nope, for most people without any knowledge of a wheelchair they see it as a mechanical device--at best. A wheelchair is a thing, a product, an inanimate object. Worse yet, many see and associate a wheelchair with inability, physical incapacity. Here, think Grandma, Grandpa and all the elderly cannot do. The symbolic association with with a wheelchair is not positive--it is the ultimate symbol of weakness and disability. This makes me crazy--how I wonder can the average American be so stupid. I love my wheelchair--every piece of it. It is a part of me, akin to my leg or arm. I cannot envision life without it. It is a vibrant positive part of who I am. When it breaks, I am devastated--how could such an integral part of me fail. Such mechanical failures are very rare, most easily fixed. But such thoughts remind me of how I feel when my body becomes sick--yikes, I wonder, why did my bodily systems fail.

So here I lay tapping out my words on a key board loving looking at my wheelchair. I wonder what my son would make of such thoughts? Surely the old man has lost his wits. He may be right in his thoughts but I think not. I think my obvious and intense feelings for my wheelchair reveal the great divide between those who use a wheelchair and those that do not. We are talking about a cultural gulf the size of the Grand Canyon. I firmly believe there is a disability culture as unique and fascinating as any other subcultural group. Not all crippled people are members--some are not happy nor do they embrace disability culture. The reasons for this are many and varied starting with the overwhelming stigma associated with disability and wheelchair use. But some of see through this cultural bias--we understand it for what it really is--bigotry plain and simple. Frankly I am letting my emotions fly or as some in the body art community would say "letting my freak fly". I am acknowledging my love for a fire engine red wheelchair with its plain black upholstery, one brake, four wheels and superb ride. It is a part of me I cannot envision life without. Hence I mourn its temporary loss and look forward to the day we are reunited. And I know that day grows closer every day. My wounds are heal well and I am making steady progress. In fact, the wound care nurses characterize them as "beautiful". Of course, I look forward to the day they do not exist and know that day will come in the next few months. Then and only then can I be reunited with the most lovely wheelchair on the face of the earth.

Things I Miss Large and Small

It has been a month or so since I found my wound and am stuck in bed. Frankly, I shudder at how quickly the time has past. And no I am not having fun. Over the weekend it dawned me how much I miss doing things I took for granted. I am nor referring to work but rather the small things that make a life. So what do I miss? In no special order:

1. Kayaking: This is the best time of year to be on the water. Power boaters are few and far between, the heat of the summer is no longer a variable, and the changing color of the trees spectacular.
2. Driving: I miss my car. I love driving and once a week I would drive to new location for no reason.
3. Food: I miss cooking my own food and putting it on my own plate. I miss making my own sandwich, making coffee in the morning, getting my own beer and picking out the beer mug.
4. Tub: I miss soaking in a warm bath.
5. Cleaning: Hard to imagine but I miss cleaning my own house. Such mundane activities help me unwind and think.
6. My desk: I miss my desk where I always get my best writing done.
7. Grocery shopping:Another activity hard to believe missing. Ordinarily shopping is a chore but I miss picking out my own food.
8. Students: I miss the enthusiasm of college students. Even when they screw up, and they do, it is somehow endearing.
9. Puttering: Screwing around the house and letting my mind wonder. I do my best thinking organizing my files and book.
10. Splitting wood: I have a wood burning stove as my principal source of heat. I collect and split all my wood in the Fall.
11. Fire: I love to burn wood inside and out. I often collect wood and cook food over an open fire. I enjoy the unique wood fire provides.
12. My son: I miss doing stuff--anything together. Thankfully I knew long absence was coming so I was prepared. I have learned he does not like to talk on the phone or email so we text message. He sounds like a man now. Wow has he matured.
13. Routine social interaction: The hardest for me to imagine missing. I actually miss people. I miss the ordinary social interactions we do not think about.
14. Dog: I have an active lab I miss playing ball with. I love to see her run. Now I toss the ball from my bed across the living room floor. This is a very distant second to being outside.
15. Privacy: I don't get to be alone often. I value solitude more than anything else.

The above list is silly and is not intended to be sentimental. It is random at best and indicates to me how small and large factors impact our lives. The reality is each day I am in bed gets easier: I am resigned to my fate as it is for now. I know my wounds are healing, my skin care and wound care ideal. am doing everything in my power to heal and am making slow albeit daily progress. I sure as hell have my ups and downs--I remain very emotional, a basic case when compared to my ordinary life. But I have even accepted this. I worry all the time--I look at the wound vacuum a million times a day and am terrified of power outages. No power no wound vacuum or clinitron bed. So my mantra has become my dependency is temporary, a very short period of my life given the numbers of years I have been alive. This helps but not as much as would like. Instead of dwelling on this I occupy my mind, write, read, and put up a post such as this one.

It's Back to Day One Again

I sat up for the first time in nearly two weeks yesterday. Wow, what a pleasure! My sitting time was of course severely limited. I got out of bed, into wheelchair and then in the back of my car. Why was I in the back of my car and sitting up? Simple: insurance refused to pay for an ambulance to transport me to and back from wound care. If I paid for such a luxury it would have been about $1,200. This does not include th cost of the appointment at wound care--also not covered. Hence I was transported laying down in the back of my car. If we got in an accident screwed does not even begin to describe the consequences.

To say I was stressed out yesterday is an understatement. I did not sleep the night before nor could I eat the morning of the appointment. Accompanied my brother and brother-in-law, all went well. The bottom line is that both wounds are healing nicely. The surgeon is a funny lady--she described the wounds as "beautiful". Flowers I are beautiful wounds are not. Regardless, my "beautiful" wounds needed little debridement hence I lost little blood--my my major concern as the last debridement was a gruesome bloody affair. The time table for healing is vague as we humans, especially those paralyzed, do not heal on a set schedule. I gently pushed for a time frame and was told before the end of 2011. Shock spread across my face and I said I needed something more precise. The surgeon replied with a somewhat less vague 2-6 months. This is fair--vague but I can at least wrap my mind around this. Aside from medical issues, I am still struggling with the great cost of my care. I have made zero progress in this regard. This is alarming though a short term problem. My only success came yesterday when I expressed concern about the cost of bandages for the wound vacuum--I was thrilled to see the wound care specialist used one bandage bundle for both wounds thus saving me 50% of supplies. As I was leaving this persona gave me a big box of supplies--sample she said. Score one for the home team.

I must be getting better physically as my choice of reading is improving by leaps and bounds. I am back to reading typical academic discourse, stories about disability rights abuse, and most importantly getting pissed off. I am thus starting to look beyond my own tale of woe and thinking--a healthy sign. Given this, I will start to write along two lines--posts about my progress and compromised life and a return to disability rights as civil rights. In essence, I am back mentally and resigned to my life as it is for the next few months--yes, the next 2-6 months. I have also not given up on ski season or teaching in the Spring--maybe I can handle one class and some ski runs in February. I need to have reasonable hopes and start writing about disability rights as civil rights. I know this viewpoint will not be found in the mainstream media and have read a few articles from the NY Times in recent days that have annoyed me to no end. On such story had to do with paraolympians competing with so called able bodied athletes. Apparently this is becoming more common though at times controversial. What the NY Times failed to mention is the only time controversy arises is when an athlete with a disability soundly defeats his or her non disabled competitors. When this happens all of a sudden any adaptive device represents an unfair advantage. In a word, bull. Ah, it is good to be getting back to my feisty self.

Reading, Reading and Reading

I must be healthier as I have mad a transition from reading crap to real books. Hence murder mysteries and action adventure novels have slowly been replaced by good books. I started with a biography of Moe Berg, a baseball player and OSS operative during World War II. I then read another wonderful biography about Sam Steward, an academic turned tattoo artist. This text was fascinating in that Steward was gay, kept detailed record of his sexual and personal life. This is a unique text and offers a glimpse into what it was like for gay men at a time when homosexuality was considered a mental illness. I also reread parts of the Body Silent as it related to issues of dependence. I have recently finished Beth Haller's wonderful book Representing Disability in an Ableist World. This book I consider a must read for all those interested in the skewed media representations of disability. And my God, how much more skewed could the representation of disability be in mainstream media. Haller insightfully delves this subject and provides a penchant analysis.

Representing Disability, shrewdly published by Advocado Press, should be used as a required text in mass media and disability studies classes. Haller' book consists of 10 chapters. Some chapters resonate more than others, for instance I particularly liked
Chapter 4, Not Worth Keeping Alive assisted suicide debate as debated in the New York Times. Frankly I disagree with Haller's conclusions but respect her scholarship and admire her obvious respect for Not Dead Yet, a group sadly ignored by the mainstream press. In my mind, what makes Haller's work so important is her ability to get across the deep impact ableism has had on the lives of all people with a disability. Also worth noting here is Haller's discussion of alternative media outlets and internet resources. Whenever I am at a loss to explain why the media screws up a disability related story I now have an invaluable resource to rely on as will all others wise enough to purchase her book.

I am Not Depressed But...

I am certainly not happy. To me, this is a perfectly reasonable response to my current predicament. I have been completely independent since I was paralyzed. Like many other people, I highly value my independence. Indeed, I consider independence central to my identity. Thus I am like most Americans in placing great value on independence. Unlike most Americans however I realize how fleeting independence really is. I have given great thought to why we Americans value independence. For those of us who are paralyzed, temporarily or permanently have lost independence, and the terminally ill we realize what a crock independence is. No one is fully independent. Most people are dependent upon employment to put a roof over their head, some are dependent on family or a spouse, But no one, and i mean, no one can survive without human contact that at some level contains a measure of dependence. The dependence can be large or small, significant or seemingly insignificant but it is ever present. I know this is true as I have experienced being both independent and dependent.

In terms of disability, what bothers me is he double standard that is applied to people with a disability as opposed to those without a disability. Frankly people do not care about the disabled. We are seen as inherently flawed, physically and socially. We are seen but not seen. It is only when disability strikes home that people suddenly get disability is a social malady. What does it matter if one cannot see, hear, or has lost a limb. We are inherently the same person. I am the same man before and since I was paralyzed. I am however not treated the same. This double standard has grave consequences when dealing with the health care system. Fot instance, when I became medically stable the hospital wanted me out the door ASAP. My choices were stark--a nursing home home or purchase a clinitron bed and rent a wound vacuum. This cost big bucks and I had the family to make this happen financially. The case worker and doctor agreed home was the best route. But neither the case worker or MD really cared where I went. The institution wanted me out, what happened afterwards was not their concern. At no point did any one ask or think what would happen to me in a nursing home. Sadly, this reality, moving a paralyzed patient with a sore to the nursing home is the norm. Worse yet, most paralyzed people never leave a nursing home. But it is not jut paralyzed people that face this dilemma. What about the elderly that are commonly disposed of this way. What about the terminally ill? How many can transition to a good hospice center? Not nearly enough that's for sure.

The double standard I am referring to is deadly. It affects millions of people and is a true sign our health care system is hopelessly flawed. When I was in the hospital this was a constant refrain. The system is broken, there is nothing that can be done. All acknowledged this no one did anything about it. So, if I ended up in a nursing home it was less than ideal but it was no one's fault aside from the hopelessly broken system. Well, we the people are all part of the system and someone needs to figure out how to fight back. I tried, and got nowhere. Frankly contacting another human being on the phone was a job by itself. I have never talked to a human being at my health insurance company--I am not sure it is possible. The wound vacuum company, KCI, would not lower their rates for me by a dollar. Thus I am paying exactly the same price as a huge corporation or hospital to use their equipment. All this makes me wonder why we accept a double standard. What happened to basic human decency. Why could a human at KCI not say let's cut this guy some slack. They are giant corporation but as we Americans have learned such entities have no heart or sense of ethics. Indeed, on gloomy days like today I wonder if compassion and ethics are a thing of the past. Worse yet the most vulnerable are most likely to be hurt.