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Thread: Hi, Pianodave here--haven't posted in years.

  1. #1
    Senior Member
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    Hi, Pianodave here--haven't posted in years.

    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
    "Leela, you look beautiful. Incidentally, my favorite artist is Picasso."

  2. #2
    Welcome back, Dave! You were missed.

    Are you working with a urologist on your bladder management issues?

    Have you considered using a mobility scooter for public mobility (outside your home)? "Lurching" around makes it sound like you are a fall waiting to happen, and a scooter could also make you less fearful of falling.

    Have you sought out counseling for your PTSD issues and disability "guilt"? There are well prepared and experienced psychologists out there who can help you manage these issues, and teach you strategies so that they don't control your life. Cognitive Behavioral therapy is the most successful type of therapy for both these issues.

    There are many here on these forums who are also fairly incomplete...now days it is much more common to have a incomplete vs. complete injury. You are still part of the "club". Let us serve as a sounding board and place for getting suggestions for dealing with these issues.

    (KLD)
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

  3. #3
    Quote Originally Posted by pianodave View Post
    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
    Don't let your past consume you, it's over and done. Ask for forgiveness and move on to your new life.

  4. #4
    Senior Member pfcs49's Avatar
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    Welcome back, Dave
    Interesting how you relate to your injury and life. I'd say don't look back, get on with your rebirth as a compromised person doing extraordinary things.

    What kind of music do you do? I ask because my wife is a cabaret and GAS singer and usually works with a trio. Always open to alternate pianists
    Music certainly was a necessary companion in my life. I am still playing the trumpet I got in 7th grade. I'm 71. Fortunately, it was a good horn!

    Also, notice that we are distant neighbors. There's a baby grand here in this old barn if you'd want to visit.

    Welcome home, Phil
    69yo male T12 complete since 1995
    NW NJ

  5. #5
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    I think most people struggle with whether or not they "fit in", able-bodied or disabled, it does not matter. We are social creatures and part of the programming is a need to fit into the herd. Some people carry a heavier load of that than others.

    The motivational speaking about your injury might possibly slow you from focusing on the present. You might try not doing it for awhile, though I imagine the attention that goes with it is pretty nice. Journaling helps me figure myself out and accept myself as is. There is much I don't particularly like, but since I cannot change it, too damned bad if someone else doesn't like it.

  6. #6
    Dave,
    I relate to your post. Not regaining any function part. But regret and not fitting in.
    I m a c-7 and the accident was my fault. And i regret a lot of my decisions over the years.
    But I know there is nothing I can do about them. And if I think about them I will get really depress. So I choose not to think about it. Just look forward and forget the past.

  7. #7
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    Hi KLD and everyone

    Good to hear from you all again.

    Yes, I went to a pelvic therapist. She basically told me to drink lots of water and gave me pelvic floor exercises to do. I am not sure of the efficacy of the pelvic floor exercises. As for the water drinking, I was given to understand that the more you drink, eventually your bladder will get used to holding more urine. When I drink a lot, I go on the order of 12-16 times a day---more when I'm stressed. I was told that when I don't drink enough, my bladder lining gets irritated and I urinate to rid myself of the irritation. And it is true that urination feels different when I've guzzled a lot of water beforehand (i.e. full feeling and urgency instead of slight burning or irritated sensation.) It's just that I am having a hard time seeing drinking more water as a long term benefit. Every time I try, my bladder makes it really difficult to do my job (playing piano, seated for long periods of time, in front of an audience). Should I keep trying to drink my way out of this and hope for a meaningful change?

    Regarding scooters, while I love the idea, it is easier and quicker for me to just grab my rollator out of the car. As to lurching, I agree that I am a fall waiting to happen, and I have fallen sometimes---but I am still young enough that I have not injured myself. I feel like my slow walking speed is an asset because I rarely trip from going too fast. The other thing is that it really is a mental issue. My body will freeze up on me if I feel unsafe, despite rationally not being in any danger. I will consider going to try EMDR and cognitive therapy again, but I don't want to spend the money if it's not absolutely necessary, and my use of a walker makes the situations where it could happen really infrequent.


    I feel that not conquering your fears is okay--the walker makes it so I never have to face my fear, and I am okay with that if I can continue to do my job.

    Thanks to everyone for your comments. Question about the Motivational Speaking part. Should I feel bad about "monetizing" my own bad luck? I have always wanted to live a merit-based life, and to know that I'll be making more money in 2 hours than my hard-working wife makes in a week---it eats at me. Why should I be earning more just because I was in the wrong place at the wrong time?

    Finally, I appreciate still being part of the "club" although it's one none of us want to belong to. I am grateful to all of you here over the years for helping me process what's happened to me. I hope to contribute to the site in the future and maintain a presence on CareCure.

    Dave
    "Leela, you look beautiful. Incidentally, my favorite artist is Picasso."

  8. #8
    Senior Member pfcs49's Avatar
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    Your quandary reminds me of the 2nd promise in the Big Book of Alcoholics Anonymous: "We will not regret the past nor wish to shut the door on it"

    This is a little different than my post suggesting not looking back, and good practice IMO.
    There's some old poem somewhere sic: I am a part of all I have met...
    It's so true! Everything in my life has informed my present. Much of what I did in the past I am not proud of.

    Sometime after I chose sobriety in 83, I had a little epiphany: I'm OK! Did a lot (and still do things) that aren't OK, but they do not define me! I'm no longer the piece of shit I sometimes believed I was. I'm OK and am working on changing anything I don't find acceptable. (theist AAers might say "God doesn't make any junk and I'm a beloved child of God." I'm OK with that and it's metaphorically true to my own experience as an atheist)

    On a more practical level, If I faced a urinary problem as described, I'd have a condom cath and a leg-bag quicker than you can say Oh Shit!
    I wear a 32oz latex bag (suprapubic catheter). Frees me up to drink a hell of a lot before a pit stop. A lot of ABs do this when they are away from facilities, like record setting sail plane pilots and long distance racers. No shame in that!
    69yo male T12 complete since 1995
    NW NJ

  9. #9
    I'm familiar with that survivor's guilt, too. I also don't fit in anywhere.
    Hey Dave. I guess we've both been gone? Anyway, the only suggestion I have is try to pay your good fortune forward. Guilt is 100% negative, if not used to motivate positivity! I lied, I have another suggestion. Find a therapist trained in EMDR, invest $500 in the PTSD. I'm amazed at the speed and efficacy of this therapy. I no longer get stuck in the mental loops. Be well. It's ok to succeed and be happy! https://www.emdria.org/page/emdr_therapy

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