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Friday, October 22, 2010

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.

Thursday, October 21, 2010

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.

Monday, October 18, 2010

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.