The list of things I cannot do is long. The list of things I can do is short, far too short. I can eat, write, read, and manage a small world in my living room. But that living room is akin to Mars. What your average human can do I cannot. This reality is hard to accept much less live wiyh. We Americans celebrate personal autonomy, self determination, and independence--these are core cultural beliefs. We conveniently ignore the very real factors, social, economic and physical, that affect one's ability to be independent. When we fail to be independent that failure is often self directed. Well, I am not directing any such self blame inward. But this does not mean I am happy. What I am is emotional--yikes this is hard to cope with. I frequently well up in tears and my frustration level is off the chart. As I told one friend, I don't do dependency well. Like it or not, I will ned to master this in the coming months without losing my sense of self. For now I am taking things day by day and moving from the trauma of two weeks in the hospital and two bloody debredements.
The above thoughts led me to read Bob Murphy's Body Silent yet again. He eloquently wrote about how his life as quadriplegic made him utterly dependent on his wife and family. The stress and angst thiscaused was significant. How this will affect me, my family, and friends ask for help is to be determined. At least my son is out of the equation--he is at colloge and will not return to the Xmas holidays at which point I will be up and around or close to it. So here I lay and wory. I am not worried about healing. I know I will heal. No my worries are tied to those I am dependent upon. This concern I know is base on the fact relationships are reciprocal, a give and take. Well, I am going to be doing more taking than giving. I thus feel powerless, not a good frae of mind or method to manage relationships. But I also know this is a short lived state. I simply hope I survive this intact and with continued family support.
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.
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Saturday, September 25, 2010
Posted by william Peace at 10:45 AM
PhD 1992 in anthropology Columbia University, I am interested in disability rights and bioethics.
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It strikes me that perhaps you think dependency is a sign of weakness. If so, what rubbish! We are all dependent, that is the very essence of a relationship. But we allow our ego to dictate which dependency is "good" and which is "bad". No such thing, only good and bad intent, no?
Have you considered that perhaps part of giving back in a relationship is letting someone take care of you? You've been on the other side of the equation, where giving and taking care of others becomes a reward in and of itself. Now you're on the other end, where people who love you can express that by taking care of you. Allowing people to express their love is a big way to give back, I think.
There are times when everyone will be stressed, but you know, you would do it for them in a heartbeat if the situation were reversed. Just remember to express your appreciation often.
The hardest part of disability for me since I am very limited in how much I can do is that I can't be the volunteer and giver that I was anymore. But, I can be a listener, and I find that family and others often come to me with concerns and look forward to that time of helping me out. It may help to think of it as interdependence rather than dependence.
Recently I had to have a friend and my cousin help me with dressing/hair combing when my husband was away--my daughter got too ill and run down to help. It is embarrassing for me, especially with one of the physical problems I have. But they did not mind one bit.
One more idea: you may want to line up someone extra in case of emergencies from care.com. I know you need to keep costs minimized (as do we), but if some of your caregivers have emergencies, get ill, that's a good resource to find experienced people and do a lot of screening up front.
A friend can set this up and whoever asks how they can help or is already helping can be added to the list. Your helpers can also benefit from any meals churches/volunteer groups can help with at your house so they can eat while they're there and devote time to other tasks.
If anyone asks how they can help, have a list ready to go, either on this system or separately, from pharmacy trips to mowing or sweeping. I give people the list and let them pick what they prefer/are able to do. I'll also email you my master grocery list--though you don't need as much as a family of 4, it's easier to make sure nothing is missed since you can't check for items yourself, and a lot can be stocked up on in advance.
I can relate to worrying about being dependent. My boyfriend does much more for me than I do for him. I hope that eventually this will change and I can give back, but he also says I give back love and he wouldn't do all the things he does for me if he didn't want to.
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