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A small victory but a victory

PhoenixPPhoenix Posts: 10
edited 06/11/2012 - 8:47 AM in Depression and Coping
Finally finished filling out my SSDI forms. Five days of pure hell, filling those out. Constant sobbing, with every question. The problem: the formal admission that I am disabled, permanently, irrevocably disabled. I've never even uttered the words out loud before, much less seriously thought them to myself even! I tried once to say the words, just to see if I could, but couldn't choke it out.

My spinal disease rendered me disabled. The surgery to mechanically replace what the disease took from me rendered me more disabled still; a total fusion from T10 thru S1. I am so grateful that my surgeon could give me some sort of spine back, that eventually I should be able to walk more than a few feet and be able to build some sort of new "normal" again. But the disease that ate my spine forever took away so much more than the surgeon can ever give me back. I've struggled with back pain my whole life, but never dreamt it would ever come to this. I wasn't going to ALLOW it, but the disease had other ideas. Even so, with all the pain, with all the surgeries, with all the limitations, I simply could not wrap my mind around the fact that I was NEVER going to have at least SOME of my old life back.
We make plans and God laughs.

Filling out those forms was SO overwhelming, I wasn't sure I would be able to finish without actually dying from heartbreak. I thought I would be soooo relieved and released after I signed the final piece of paper. This morning I was. But the reality has come rushing back. It's now on my permanent record. No more pretending, no more fantasizing that by sheer prayer and will power, I WOULD re-gain as much of my old life back as possible. But that's not ever going to happen.
I am always going to be extremely limited in what I will be able to do. I will never be able to work at a job again due to the constant pain and special needs I'm stuck with.

BUT, I've taken the first step in admitting that I AM disabled. I will always be disabled. I guess this is the acceptance part. Isn't it supposed to get a little easier after you've managed to accept your reality? I think it will. I pray it will. I need it to be so. I would like to stop sobbing and start figuring out what kind of new normal I can build for myself. This time a lot more realistically.
Goal: Stop sobbing for cryin' out loud and start looking forward again!
Goal: Say the words out loud to someone. One more step towards true acceptance of my situation.
Goal: Allow myself a little pat on the back - I DID finish the forms, I DID finally make the admittance I AM disabled. Enjoy and celebrate every single victory, however small. Someday, the victories could be bigger!
Goal: Keep setting goals!!

Thanks for letting me cry and vent. You all help me get thru my days and nights, just by knowing I am not alone and there ARE people who understand. REALLY understand. It's like hugs I can carry with me all day long and hopefully you can feel some of my hugs back :)



  • Phoenix,

    Glad to hear you finished off your SSDI paperwork. It was a long drawn out process, and yeah, by the time you are done that word "disability" is no longer a word, but a descriptive of our 'new normal.'

    Many of us can understand the tears, the bummed mood the piece of us that really doesn't want to believe this is now the way it is. I was not far off from you and your stated emotions when I filed for disability retirement. I know you probably feel like you've resigned from 'regular' life. Well, I guess we have, but have we? Hopefully you will find that we now do other things, and of those, maybe different than how a 'normal' person does it, but hey, we found another way and it still works.

    It will take a bit to get that "D" word to settle in, but Phoenix, remember it is just a word. It is now up to you how disabled you will be, or will you be "re-abled" (my new word) through new things, and new ways to do things. Please continue to share your transition. Hopefully we can help you avoid the bumps that some of us already hit on a similar path. Support *HUGZ*

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Phoenix,
    Gentle ((hug))
    I haven't gotten to that point & I guess it had never occured to me how difficult that would be. Thank You for opening my eyes to that side of this path that we share.
  • Phoenix,

    I can certainly appreciate the process you have just completed documenting, answering ?'s and validating your life with this disease and claiming disability.

    It was 2002 when I went thru the process, I was just realizing the beginning of the degenerative disease / arthritis going systemic (beyond my spine) and bringing me to two surgeries on hands, knee requiring over a year from being able to work with a minimum of 12-14 months recovery.

    But it didn't come to where you are in acceptance of being "disabled" until 4 more years, with two more surgeries (hip/hand) and a pending serious cervical spine / thoracic spine added to the list.

    Phoenix, it took much courage to come where you are and face the reality of your physical challenges.
    My hope is that you also can fully realize / discover the amazing facets of who you are.

    That is a major step in reaching "acceptance" and it is done not by the faint-hearted for sure!

    I have found in reaching acceptance, a shift occurs, sometimes subtle, but it truly is a major quantum leap! I found surprisingly things begin to take shape in a new way...and I am allowing myself to discover new pathways of how my heart and spirit is not bound to that which seems so limited and challenging with a disabling disease.

    From the way you articulated so well about your process and in sharing your experience and the disease that has brought you here, you touched me and probably many others, and I would believe you have much to come beyond this disease!

    Thanks for sharing with us this major step... (((hugs)))) to you.

    Please know my heart-thoughts are with you and even though this disease can take much and be challenging, my hope that it can't keep you from experiencing new pathways...without boundaries!

    "Joydancer" Janelle

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