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Sunday, January 16, 2011

At a Lose for Words

I have always considered myself a lucky person. I was blessed with the best parents, great siblings, and have had phenomenal family support my entire life. In college I feel in love with an area of study, anthropology, and have been able to cobble together a career that has been rewarding. I thoroughly enjoy writing and have a decent or perhaps modest publishing record. Teaching college students at Purchase College is rewarding in the extreme. I also have a wonderful son who I love very much. I am proud of him and since he left for college am stunned by his growth and maturity. I joke with others that I have spawned a responsible adult. I live in a nice home an hour from New York City, one of the most cosmopolitan cities in the world. I even have a black lab, Kate, I adore who makes me laugh out loud at least once a day. In short, I have much to be thankful for, especially now as I know without family support I would be in a nursing home. Yet even with all these wonderful things going for me I am pretty much miserable. I feel as though I have no joy in life. For the first time work is not enough. Writing is not enough. Reading is not enough. Television is not enough. XBOX is not enough. I want more. I want my life as I lived it. I am not sure when I will get that life back.

What prompted the above? I saw the plastic surgeon last week. I did not see your average plastic surgeon, I went big time and saw a highly respected surgeon from New York City with lot of experience with flap surgery. He examined my wound and told me that flap surgery is not the panacea many believe it to be. There are some very real down sides to such surgery if things go wrong. I have a wound that is healing, it has great granulation and is in the estimation of many "lovely". The surgeon thinks, though cannot promise, the wound and the troublesome undermining will heal on its own. If the undermining does not fill in it can at a later date be filled in with piece of muscle tissue from my thigh. This sounds pretty reasonable to me. Indeed, this is the first time I have seen a surgeon who did not emphatically state surgery was needed now. I don't know what to make of this. In my mind I had envisioned myself operated on and up and about in a week to ten days. My life returned to me. This fantasy did not take place and has sent me into a tail spin. I feel spent. I have accomplished little since September. I can live with that given how sick I was. What I am struggling with is the unknown. I do not when my wound will heal. It could be four weeks or it could be four months. It could need surgery, it might not. Victor Turner, an anthropologist I like coined the position I am in as being a liminal state. That is I am "betwixt and between"--I am not sick nor am I well. I am home but but home bound unable to function as I once did. I am dependent upon others but independent in many ways. I do not like being liminal. I do not like being on the sidelines looking at the world pass me by. As Robert Murphy wrote in the Body Silent, for many years people with a disability were liminal members of society. This was true in the 1970s and 1980s but somewhere in the 1990s things changed. Our rights were recognized, civil rights, were recognized legally. Sure those rights were ignored, belittled, and trounced upon. But they were acknowledged civil rights. I had the power as did other people with a disability. So without getting too analytical I think what has sent me into my tail spin is the overwhelming sense of being powerless. I cannot make my wound heal. No one can do that. Until that wound heals my life is reduced to a liminal state, one that brings back not so fond memories of when I was first paralyzed and treated as less than a sentient being. This was the norm circa 1978. The medical establishment reigned supreme and knew exactly what people with a disability needed--rehabilitation. They were correct, rehabilitation was needed but they failed miserably at suggesting what to do when it was complete. Worse yet was the paternalism--anything a paralyzed person did that approaches "normal" was an inspiration, a great accomplishment. Oh, how this angered me! I wanted, and once a while did, act out in frustration. I was not alone for anger when directed correctly is a powerful tool--it was what motivated a person like Ed Roberts and led to the founding of the independent living movement.

I do not think there is an answer to my tailspin. I am unhappy, miserable really, and think this is a logical response to my life as it is. Would therapy help? Well, I could do this I suppose over the phone. I hate the phone. I could ask for a prescription from my doctor but does taking a pill really make sense. Again, being sad, upset, and unhappy seems like a reasonable response. I do function--I am eating, bathing, caring for myself. I read, write a little, watch TV, play Halo (I have gotten much better), and get through the day. I just do all of this with no zest. I feel as though this is a dark time and one must remember and survive those dark times. I must remember how I feel now because assuming I am back to normal some day will get an abrasion on my skin. I will want to go to work or out of my home and the vivid recall of being in bed month after month will surely prevent me from getting up and taking a risk with my skin care. Likewise, when I do not feel like checking my skin with a mirror I will recall today and reread this entry. So for now I am content to let myself be miserable. I do my best to hide my unhappiness from others though I am not effective all the time. With those I am close to I talk about this problem--I do not want to fall into the rabbit hole of depression that claims the lives of too many people. I do not think I am there yet meaning a depressed state. That is one place I do not want to go-ever.

What am I doing to change my mood? I am going to do something, I just do not know what that something is. For now, I will try to look at the bright side of life. I envision myself skiing, I check the conditions in Vermont and New Hampshire at my favorite ski resorts. I look at pictures online and try to figure out where the people are. I am investigating custom multi use buckets for paralyzed people that can be used skiing, biking, or kayaking. I follow the New York Rangers closely and get satisfaction they are having a good season. I hope they make a deep run into the playoffs so perhaps I can attend a game with my son or brother. I try to talk to my son when he is not surgically attached to the couch, his computer or consuming mass quantities of food. I watch the birds of prey outside my window ride the thermals and hunt. At night with the outdoor lights on I gaze out at the icicles twinkling that now go from the roof to the ground.This is a first in ten years at my home. I try to invent things to cook in less than 20 minutes that are tasty, loaded with protein and easy to clean up after. When I do all this I am okay. I just need to get better at this and look forward to the day I am up and around and this dark time becomes a bad memory.


Unknown said...

You are not in need of therapy or any pills. You need to get out and have companionship. You also need other people to feel free to visit you!
Right now society is ignoring the basic needs of all physically challenged.
We've made progress but there are too many dummies in this world who feel a handicapped sticker is all we need.
I don't know how hard it is for you to get out the door on your own or if you require assistance with your chair.
When you get out, even to a coffee shop, how about politely expressing your opinions to the other patrons?
The squeaky wheel gets the grease and we have to squeak louder.

william Peace said...

Ginger, Yes I need to get out but cannot do so. My sitting time is severely limited--less than 2 hours a day. I cannot put pressure on my wound. The more i am up the slower I will heal. I also try to limit the number of transfers. I live at least 10-15 minutes away from any store or destination. Any trip requires a transfer from bed to chair and chair to car. Not a good idea. I get visitors but that this a a far cry from social interaction I am accustom to. I miss interacting with colleagues, friends, and especially adaptive ski programs. The wound will heal but until then I am stuck. Frankly I do not even enjoy sitting. I need to cook, clean and get all household chores done at warp speed. As always I appreciate your thoughts.

Unknown said...

So sorry. Thank you for explaining your current condition.
You have a great deal to offer the world and you will have the opportunity. Unfortunately it appears the only thing you can do is have P.A.T.I.E.N.C.E.
Hope that someone has positioned your computer so you can operate it from a lying down position.
You are a very strong person. A weak person would have cracked under the pressure before this.
Keep smiling.

Unknown said...

Hi William,
I'm sure you will make the best decision for you physically.
However the isolation you are facing is felt by far too many, the chronically ill and elderly. "Society" says "you are used to it".
Yet people in prison may not have the best choice of activities and companions, but they have them. I believe only death row inmates have almost complete isolation and extremely restricted exercise hours per week.
You have been isolated on Halloween and possibly face similar isolation on Easter.
Of course your family is great. But you need to be you!
Wish I had the answers for you but I don't. All this brings to mind is the character, Andy, in the movie Shawshank Redemption.
Please keep your mind active.
(Right now I'm facing additional health issues again. Take care)

Sketching Girl said...

Hi William, suffering with stress and depression is something I am familiar with. I have been on pills in the past and don't think they helped me. My healer was time, and getting away from the situation that caused me stress and got me down. Not as easy for you to do I can see. I think it's good that you are doing some work, some reading, writing, watching TV and playing Halo. Better than moping and doing nothing.

One idea I can think of for you, would be try something new. Something new and exciting you can learn or do, like a new hobby. Obviously one you can do sat down or in bed. For example, writing, have you tried writing fiction or poetry? Art, Drawing or Painting? Learning a foreign language? Anything! I would suggest crochet, knitting or cross-stitch too, but am being stereotypical here in assuming you wouldn't want to!

I think if you can find something new and exciting to do, it will inspire you and keep your thoughts moving in happy new directions. You are bored of being stuck in the house unable to live as you did, maybe concentrating on learning something new might help. You could always rewrite a 'Glee' script with a cranky 'Artie' - it can't be any worse than the actual series! Have some fun!

Hoping some of this helped,

Sketching Girl :)

william Peace said...

Sketching Girl, I love your idea of a script with a cranky Artie from Glee--a real bad ass crippled Artie. Now that would be a hoot! I swear my life sometimes is like a comedy show--it must be lived to be believed. I will have you know I am pretty good with a sowing machine. I like it when we defy gender roles and take great delight when I see a woman doing a typically male job.

Liz said...

Patience sucks and it seems like I have to learn it every time I need it.

I hope you get your mojo back soon & your wound heals!

- liz