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My name is mala and i am a paraplegic, new, not new

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  • My name is mala and i am a paraplegic, new, not new

    Long ago, in a land far far away,

    Thats how stories with happy endings usually start i guess.

    That said allow me to introduce myself in a manner of speaking.
    This forum is new to me, SCI is not and my own personal adventure begin officially on October 31st of 2008 when i joined the ranks of incomplete paraplegics.

    What took me down was a little fellow called a Schwannoma, oh i was lucky they say because usually it is linked as a secondary to other primary tumors generally in the brain. This one had been happily settled in my thoracic spine for many years all by itself until 5 days after my 54th birthday.

    Funny now that i think back, i had fled an abusive marriage, come 1700 miles to live. All because i wanted to live.

    When it hit i had taken a blue collar job until i could get my nursing license back and rejoin the professional world, so i had nada really.

    In the hospital the tumor was removed successfully and being who and what i was, i took over and dominated my care and surroundings. Never once did i allow myself to grieve or come unscrewed in public. It hits now and then but i don't have time to grieve the past, the present is all that matters to me right now, the future well it will come when it comes.

    What caused me to post this is for one it is customary when new to a site to introduce myself and for the next i suppose its time to address the issue. Hard as it is for me to say, i am a paraplegic and this will never go away. Normalacy as we knew it is as far out of my reach as the moon. I need to adapt.

    In the hospital i had a scholarship bed for 2 weeks on their rehab floor and used every opportunity to glean skills and tips. In my former line of work now 14 years out dated i worked primarily in Orthopedics, Neurology and Rehab (in short stints). So i knew alot of what needed done and addressed it with the same theraputic air i would have, had i been a patient of mine.

    Disassociation is what kept me moving forward.

    When discharged i was told i merited a bed in a rehab hospital, another scholarship bed, two weeks worth. I told myself i had two weeks to get my feet back under me or well frankly i don't do failure and i saw anything less as failure.

    While at this hospital i recieved my first care plan update the first week and was told by the Rehab Nurse/ social worker that i was not a canditate for walking, to weak, lacked feeling in the right places to allow me stability.

    All they could do was train me for life in a chair. Angered i vented on the therapists who god forgive me were not guilty of this. It was merely the Queen of paperwork's interpretation of their words, they had every intent to train me as best as possible even bargained for more time with me but unfortunately being a freebie and uninsured it was out of the question.

    My two weeks spent, i was discharged with a hand shake and a basket of well wishes.

    On SSI and medicaid without resource i have taught myself, with the help of my Significant Other and what He can devise (hes a McGyver kind of guy), to walk again. On March of 2009 i forced myself through some stumbling, dragging steps and looked at him. Since then i have progressed myself from chair to walker to quad canes where i am at present.

    Currently this is me, i walk, live independently with a man i never dreamed i would meet, let alone fall in love with and for the most part i try to be content with what life deals me. But there are times.

    What has happened since then is i have had to come to grips with the fact that i am incomplete, i will never wear 4 inch heels again, never dance again or walk without ataxia, yes i know how greatful i should be i walk at all, but there are times.

    When i was discharged they had pulled the foley and told me i had to go to the bathroom every two hours or achieving continency would not work. No one worried about B&B they just wanted to fill me with laxatives daily and handed me diapers and walked off. It was up to me to figure out how to diaper and clean a southern part i could not feel let alone locate.

    What it boiled down to is this, i was 54, professionally shot in the foot, essentially a derelict, and at the terminal end of my existance as a valuable member of society, so why waste valuable time and therapy on something that could not either give them any administrative brownie points.

    Funny thing, when i was in nursing i worked county, veterans and university hospitals, all the teaching facilities. In doing so the people who came into my care often required someone to fight for them, be an advocate push in their names to get the best care, best i could try to wrangle for them to keep them from being lost in the cog wheels of the machine, or worse warehoused in some 3rd rate nursing home to rot slowly. Now its me in the battle mix and i don't have a clue.

    Now i find myself wondering why this was done to me. Perhaps i did not fight hard enough, or shunned someone. Did i become impatient with one of my cares when delivering meds or perhaps did not avail time and hurried them when i should have been more caring and compassionate.

    These i know rationally are not the answers, this is not a punishment but who said i am 100% rational?

    Essentially while trying to find some way, i know there are methods out there to handle my current dilemma i stumbled across this forum. It was an "Incomplete's Dilemma" that caught my eye and i knew the time had come to confront the obvious. This is me, the rest of my short life but this is me and i need to embrace it, i can delude myself no longer, any more then i can hide my canes.

    This is life and reality, as a man who was a C6 Quadriplegic once told me "life you either wrestle with it and take it by the horns or it will roll over you" He was right. Another man who was right was a 'nam' vet and he told me " You can sit in my chair all day, but at the end of the day you will get up and walk away, i never will. Life is different on this side of the chair" They were both great men and i respected them greatly, now more so then ever.

    Anyway this is me in a nutshell, yes god forbid i got windy eh?

  • #2
    Welcome to the forum. You're working through a lot of intensely painful issues that beset the recovery process - there's no way around it under the best circumstances, and it's compounded by the helplessness one feels when the medical community doesn't provide ongoing support. On a practical level, it sounds like an evaluation from a physiatrist would be a good idea, as you might benefit significantly from orthotics and gait training. You'll find many, many helpful posts and ideas as you read through prior threads on this forum - it's the best online source for SCI information, bar none, with a lot of helpful people. Best wishes to you.
    MS with cervical and thoracic cord lesions

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    • #3
      Hi Missmala.

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      • #4
        Welcome Missmala!

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        • #5
          welcome to care cure.
          My feeling on it all, (I am incomplete with issues at two levels) is that we are biological beings. our time here is temporary. we are very sensitive to our environment, we break. I dont think god has lot to do with what happens to us. life is unpredictable, and really nothing except our eventual death is a sure thing.
          Like you, I found love after impact, but not before my marriage imploded. we are all better off now though. I see things differently than I did when I was first injured. I have met some amazing folks here, including a very sweet brilliant Dr wise, and great sci nurses. this place as been a gift to me. Im sure it will be for you too.
          we all know the other side of the chair. some here are very young. I think that affects me the most emotionally. the young newly injured.
          there is much to learn here about humanity, and its loveliness.
          good wishes to you missmala.

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          • #6
            Welcome MissMala,
            I think you will find these forums to be a place of great understanding and information. Many of us can relate to what you wrote, although history has shown me that there is still a lot of living to be done after an injury. Grieving for what was lost is natural, and so is hope for the future and enjoyment in the moment. Keep writing as it is a really great group here.

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            • #7
              nice eileen.

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              • #8
                Missmala, very well put! You've a way with words lady. ya know, we do what we can and live life, as we can. I'm with you on the as we are aspect, for as long as we're here.

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                • #9
                  Thank you all for your kind and welcoming words. To quote yet another person someone very dear to me " its not who you were that counts but who you are."

                  And that is the who and what of it that i need to begin to form the foundations of the rest of my life.

                  This forum and all of you who comprise its many voices so far have offered me hope, light, some laughter and a perspective on how to begin my journey.

                  One thing that helps more then anything is knowing i am not alone and that others, many many others have left their prints on the path i now begin to wander.

                  Thank you again for the welcome.

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                  • #10
                    We are all here to help you with your journey. Think of the journey as having speed bumps, but certainly not brick walls in front of you!

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                    • #11
                      Welcome. I love your style of writing and it's obvious you have a sense of humour! I think I'm going to really like reading your posts!
                      Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

                      T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

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                      • #12
                        Hi Missmala

                        Warm welcome to ya

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                        • #13
                          Another warm welcome to the group.

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                          • #14
                            Welcome to the group, sending warm wishes and much healing Chi your way. Stay strong, never give up..Keep us posted on your progress - you are now part of a special group of individuals dealing with our elegant condition..
                            '76 L4 GSW incomplete
                            (cauda equina)

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