Yesterday almost made me cry. I saw the wound care team and the doctor has permitted me to sit up in my wheelchair as needed. Yes, I still have two wounds, one small the other not so small. The more serious wound has under mining that they think is caused by constant bending in my hip. Asked how to reduce bending the hip I replied "sitting up". Well, let's try that was the reply. I was too stunned to reply and a host of restrictions were added to this glorious news--reduce transfers to a bare minimum, no trips out to the store, relieve pressure every five minutes etc. All this is fine with me and common sense. I do after all have two wounds. The odd thing is I do not know what to do with myself. I slept late and was literally afraid to get up. I was afraid of transferring from bed to wheelchair. Could I do it alone? Of course I can but no one was present to spot me. What I am feeling most now is fatigue and soreness. My arms and shoulders ache just from being up. It is the most wonderful ache I have ever felt.
It is impossible to relate how happy I am. I have my life back--I am alone! My black lab Kate is even happier, she wants to play. play, play. I can cook, clean, and be independent at home. Although this is nothing short of awesome one thought has been constant in the last 24 hours and brings me to tears--I am forever thankful to my family for sacrificing on my behalf. They provided care for me in a way no other people ever could. They did not do this for a day or two but for weeks on end without reprieve. Not once did a family member ever complain or make me feel like an imposition. Not once did anyone get mad at me even though there were times I was a royal pain the ass. When I needed space, I was given it. When I needed to voice my concerns, they listened. In short, each and every family member was as close to perfect as we humans can be. I suspect they would be mad at me for writing this because I must say I owe them all a great debt. Without them I would have ended up in a nursing home, an institutional setting that would have crushed my spirit. Instead, I was empowered at home--empowered by the love of my family. Today, I celebrate not for myself but for them--they made this happy day possible.
What have I done since I have gotten up? Well, I reorganize my kitchen, a job I really enjoyed. I cooked an early lunch to celebrate and read a book outside. I played with my dog. These basics don't sound like much but they made my spirits soar. Just think in another month I may even get to drive to the store. What I need to be very aware of is not to over do things. I am eager to split and carry fire wood and do major outdoor chores. But that will need to wait. For now sitting is more than enough. And not sitting too much or too little. I will seek a good balance and rely on wound care to determine that I am still making progress. I have come to far thanks to my family to have a set back. So my joy though heart felt is tempered by reality--I must not over do and be stupid. Event with this proviso I cannot help but be overjoyed.
Paralyzed since I was 18 years old, I have spent much of the last 30 years thinking about the reasons why the social life of crippled people is so different from those who ambulate on two feet. After reading about the so called Ashley Treatment I decided it was time to write a book about my life as a crippled man. My book, Bad Cripple: A Protest from an Invisible Man, will be published by Counter Punch. I hope my book will completed soon.
Friday, November 19, 2010
Sunday, November 14, 2010
Baxter and Assisted Suicide: A Nuanced Conclusion
Last January in discussing the Baxter case in Montana I argued that nuance is utterly absent from the debate about assisted suicide. Indeed, I find the entire tenor of most discussions about assisted suicide deeply depressing. I have come to the dismal conclusion it is not possible to sway people--that is views with regard to assisted suicide are too entrenched to ever substantially change. The result is we get two camps or schools of thought--those for and those against assisted suicide. I am opposed to legalizing assisted suicide as I believe it sets a dangerous president for at risk populations: elderly, disabled and terminally ill. Instead I wish we could develop a vibrant and widely accepted hospice movement throughout American society. Death is not the enemy, rather it is part of life. It is an experience we will all come to at some point. Of course this is easy for me to write as I am not facing imminent death and as such this is an abstract discussion. But why I wonder do so many push for laws that I think are not necessary, even dangerous? This is where that absent nuanced debate is needed and remarkably I came cross a fascinating quote that has kept me thinking for the past few days. Here I refer to John Robinson, an associate professor of law at the University of Notre Dame. In "Baxter and the Return of Physician Assisted Suicide published in the Hastings Center Report he wrote:
We should encourage states to see that the state neutrality toward suicide built into the Baxter decision is both illusory and dangerous. If we accept that death is, at some lvel, terrifying, and that the institutional extinction of human life is, at some level, even more terrifying, then we should not seek to facilitate suicide by insulating doctors who assist it from criminal or civil liability. We should seek instead to create in our communities values, practices, and institutions that will assure each of us the sort of care--familial, social, and medical--that will make the resort to assistance in suicide unnecessary. And we should go one step further, encouraging the state, through its public policy, to reduce to a minimum the conditions that make suicide, with or without a doctor's assistance, appear to be a a choice worthy of consideration".
When I read these words I thought of the mother daughter suicide that took place in White Plains, New York. To me that was a social and familial tragedy that could and should have been prevented. I hold American society responsible for that failure and by extension its people, including me. Just as I argue we need a social revolution to change the perception of disability we need a similar revolution when it comes to assisted suicide.
We should encourage states to see that the state neutrality toward suicide built into the Baxter decision is both illusory and dangerous. If we accept that death is, at some lvel, terrifying, and that the institutional extinction of human life is, at some level, even more terrifying, then we should not seek to facilitate suicide by insulating doctors who assist it from criminal or civil liability. We should seek instead to create in our communities values, practices, and institutions that will assure each of us the sort of care--familial, social, and medical--that will make the resort to assistance in suicide unnecessary. And we should go one step further, encouraging the state, through its public policy, to reduce to a minimum the conditions that make suicide, with or without a doctor's assistance, appear to be a a choice worthy of consideration".
When I read these words I thought of the mother daughter suicide that took place in White Plains, New York. To me that was a social and familial tragedy that could and should have been prevented. I hold American society responsible for that failure and by extension its people, including me. Just as I argue we need a social revolution to change the perception of disability we need a similar revolution when it comes to assisted suicide.