Hi everyone,

It's been many years since I visited CareCure. I'm married now, living life the best I can--playing music, composing, arranging, accompanying, all things music. I'd like to come back to you all if you'll have me.

*RANT AHEAD*

I am posting tonight because I realized something about myself, almost 14 years post T-5 injury.
I feel really guilty. Also, I am lonely and feel like I don't fit in anywhere--like I don't make sense. Does anyone else feel that way?

I am fortunate enough to have regained a lot of function, and while I still have body issues I feel fairly independent considering my paralysis at the hands of a drunk driver.

I feel guilty, because there are certainly better people than me who deserve to walk more. There are people who would have striven to regain the maximum function they could when I chose to rest on my laurels--people with great inner strength that I could only marvel at. I never thought I deserved the good luck that I got regarding my injury.

There are many people who possess a level of function that I myself would give anything to know again. Running, crossing the street, squatting, dancing--well, you all know what I mean. Even so, I am keenly aware how many people with a spinal cord injury would give anything to have the level of function I possess as an ASIA D. I feel a tremendous burden to self-improve and I spend every day giving music to my community because I know that I would be lazy if I didn't keep myself busy. I am struggling to make peace with "not getting better" and feeling that when I don't do therapy or exercises I'm letting down myself and everyone. I have a personal trainer come three or four times a week, and I enjoy the exercise I get, but I also know that if he didn't come, I would not exercise. Are these feelings normal? I know I'm baring my soul, and that many of you might recommend therapy to me. All I am asking for is confirmation that other people feel this way sometimes too?

Guilt aside, even more importantly, I also feel lonely. I am the only 35-year-old man I know that walks with a walker, who has PTSD and freezes up when he doesn't feel safe out in the open. I am the only 35-year-old man who grabs desperately to his car, because I would fall if I stepped even a foot away from it. I feel so unsafe on my right side that I cling to walls, lurch everywhere, go out of my way to keep a wall on my weak side. I have bladder management issues, and as the accompanist whom the concert can't start without, me trying to get to the bathroom before or during concerts is noticeable and makes people a little frustrated. For these reasons and more, I stick out, certainly.

This loneliness comes from the fact that I don't feel like I'm legitimately disabled. I am not in a wheelchair, and while I know rationally how lucky I am, cause I've been there, sometimes it doesn't register. I feel like no one knows what box to put me in, not even me. I try to live a normal life, but there are certain things I can't do, and those things are WEIRD. They make me feel WEIRD. I guess that's what I'm trying to say. I'm stuck between two worlds. I am a disabled person pretending to live a "normal life," and it hurts because I'll never be "normal." As you all understand as well as I do, we make our own normal. I catch myself thinking, "at least if I were in a chair, things would be predictable."

But I have to improvise this life of mine, and I feel like no one can relate to me.

I do motivational speaking on my story and the dangers of drunk driving and it occurs to me the more I talk about my accident that I never really healed and I might never truly heal.

Otherwise, I have a great life, one that gives me purpose and meaning. It's just that being stuck on the able side of disabled is lonely.

Any thoughts?

I am a professional pianist with a twisted sense of humor--and I am ready after 14 years of this to find peace with my disability. I could sure use a community who understands my unique challenges and respects and loves me anyway! I hope to make new friends here!


Thanks,

Dave