It's Beginning to Look A Lot Like Fun*Run Time

It's ALREADY that time of year again: The ADAPT Fun*Run for Disability Rights is April 22nd 2012. Maryland's fundraising goal is $8,000 this year. Yes, that's right, $8,000

Donate $1! Donate $10! Donate $100! Donate $1,000! JUST DONATE so we can FREE OUR PEOPLE! I thank you very much for your support!

Monday, February 11, 2008

Would I Want to Live?

I don't remember if I'd mentioned, but I'm taking death, dying & berevement this semester. I won't graduate otherwise. It's intense. My coping mechanism is to laugh, to joke around. I have a weird and morbid sense of humor. I joke about CP. I used to say the best part was getting out of long lines. I have yet to joke about bipolar, but I've only known I've had it since October. Actually, that's not true. When my meds got switched I was told there was a minute chanceof getting a deadly side effect. "Well I'm not dead yet..." I joke about my mom's cancer. I'm her power of attorney. To her face I've said "You'd better watch it or I'll pull the plug." So the problem for me? The class is too serious. I just cannot do serious. It is very hard for me to sit there for an hr.

Today we watched a tape where people were filmed that were dying. Either at home or in the hospital or in hospice. Even though it was very upsetting for me at the same time it was AWESOME. It totally imbraced my phlosophy that eveyone has their own story that is different and that doesn't mean that one story is better then the other. In the same way I preach that the best way for people to learn about disability is to hear from people who experiance it on a daily basis, I believe that it is best to learn about death from people who are dying. These are things that just cannot be learned from a textbook.

My thoughts focused on a woman with ALS who had been in the same hospital bed for 2 years. She was on a vent and had a feeding tube. The only thing she could still move wer her eyes. To the right for no, up for yes.

I have CP. My body is going to start breaking down ahead of schedule. When? Nobody knows. I'm pretty independent now, but I'm not going to die still walking around, unless I get hit by a bus. I've known this for awhile and I've come to terms with it. At some point I am anticipating not being able to walk anymore, not even being able to transfer independently, and not being able to even dress myself. No one can tell me with certainty that this is going to happen. Maybe I'm being too dramatic. Maybe it won't go this far. But I think in this case it is better to be prepared for the worst and be surprized. I decided that of course I want to live that way when it comes to it. There is not even a pause. I've had so much surgery that I'm used to needing that much help intermitently. Even with all that assistance I still have my mind and I am still me. This is proven even more by all the Disaboomers with PCAs. As my body is breaking down I'm going to make jokes about it.

If on the other hand my mind were to go and I did not even know who my loved ones were or who I was don't keep me alive by extraordinary measures. I'm not me anymore, so what's the point?

Back to the woman with ALS. Would I want to live if I could only move my eyes. Would I still be me? My gut reaction was no I would not. But then I thought about it more. If I am able to answer yes or no questions then that means my mind is still intact. I can still let people know my wishes. I have back problems. I don't know a single person my age with CP who doesn't have back problems. If I was spending that much time in bed it would hurt like a b!tch. Would you like some more valium? We're thinking it would be best to implant a baclophen pump. What do you think about that? I volunteer in a pediatric rehab hospital. I've interacted with several patients onvents. Even with a vent you can still be transfered into a wheelchair. Sometimes they can't leave their room because they're on isolation, but at least they're out of bed. Would you like to be transfered to your chair? I've always had a thing for nurses. I don't know why. The nurses in the hospital's I've volunteered at; the nurses at the hospitals I've been a patient at. I really like them all. Would you like a few nurses to eat lunch in your room with you? I could answer those question. yes I would still be me and yes I would want to live.

At one point in the documentary the ethics committee at the hospital met and discussed if it was better to continue treatment for the woman or to essentially kill her. I was worried. I thought that they were going to kill her off. What kind of message would that send to the class, and what kind of effort would I have to take to undo that? Boy was I relieved that through yes or no questions they had come to the conclusion that she wanted to live without a doubt. They decided that they needed to honor the patient's wishes above all else and they continued treatment. Thank g-d.

The difference between me and this woman? Someone would need to come up with a third signal. Yes, no, and I don't know. I say that all the time. See, even now I'm making light of it.


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