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A memoir by a woman paralyzed by Polio - lets it all hang out!

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  • #16
    Originally posted by triumph View Post
    Great! I would be interested in what others think of this book. Her decision for treatment at one point in the book has me pretty unsettled, so I'm wondering about others' reaction.

    I just finished the book. Can you elaborate on what made you feel unsettled?
    Love
    Jnanda
    Secondary Progressive Multiple Sclerosis, Epilepsy, Head Injury, Chronic Pain Disorder

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    • #17
      Originally posted by jnanda View Post
      I just finished the book. Can you elaborate on what made you feel unsettled?
      Love
      Jnanda
      Didn't want to say too much for those intending to read the book.....but, her decision to have her legs amputated really shocked me. I have recently read an interview with a prosthetic/orthotic specialist who said this occurs occasionally when the person can no longer tolerate pain, non-healing sores, etc. and requests amputation.

      The book author told of many falls, even fractures, from her years of walking with braces and crutches. I felt she continued to walk to please her father who had brought her and the family from Sicily to USA where she was fitted with braces and taught to walk on them. She had a wheelchair but said she would not use it when around her father. He had brought her to this country to have her Polio "healed" so she could walk.

      I can relate to this as I was taught to walk with braces and crutches back in the 50's after contracting Polio in 1949. With complete paralysis around the thoracic level on down I was never functional on braces. At that time they did not even teach function from a wheelchair.

      Jnanda, What do you think of her decision?

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      • #18
        I tried to reply earlier and I guess I didn’t do it right.
        Anyways, I read or heard the author mention the amputation when reading up on her online, before I got to that part in her book. And my reaction was I broke down crying. I thought it was something she faced out of medical necessity and I was overwhelmed with all I knew of her story to that point. I guess the fact she elected to do this shouldn’t alter my feelings of compassion and I know it seems she reflected on reasons later about doing this. Certainly the period this took place and people’s attitudes in public and the medical community were less evolved, or so I hope, than now. But in many ways, not. I have faced some of what she has in these areas as probably many or most of us have. We all have a unique way and experience as we go through our lives with these circumstances. I however have not worked since being disabled to the point where it was visible and I needed equipment. I can understand during the time period that she tried to present herself in a way that was more acceptable in the work force. But still I wish it wasn’t so then or maybe now.
        This book really made me reflect on many things.
        I don’t have polio like you and her, and I think about what this book was like for you because you were there in the midst of these times and I thank you for sharing what you have already.
        I see the struggle at times in the MS community about being in a wheelchair, avoiding it, dread of it, etc. Oh my gosh, I was so relieved to use one because it gave me freedom again . In my case I was in one within three months of the confirmed diagnosis. I have had pretty extreme ups and downs in function which has been a different thing too. A decent amount of problems with parental support and family. And the medical community too, as I have opted out of pharmaceutical treatments altogether. I actually know in my case, I am better off for it. But it takes courage to step out on your own, and also I have a tremendous list already of serious drug reactions from medication.
        I would love to see this book read in the book group I attend monthly. I think it’s very thought provoking and might she some light about living disabled, for others who are abled.
        I’m sure I will read it again.
        Love
        Jnanda
        Secondary Progressive Multiple Sclerosis, Epilepsy, Head Injury, Chronic Pain Disorder

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        • #19
          Thanks so much for your response.
          Your point about LaSpina's wish to 'present herself in a way that was acceptable in the work force' is an important one. In fact, she may have even made a comment in the book about her concern she would not be hired if she was in her wheelchair for job interviews. I think she also said something about 'how could I write on the blackboard from a wheelchair'. Her image of a teacher was of one standing up.

          So much has to do with our image of ourselves. It is often dictated by the times we live in. Thankfully, with civil rights coming of age for those persons with a disability, things have changed since around 1970. I was fortunate to become involved in a small way with that in '71 and '72, and I feel it strengthened my self image.

          I am aware of the ups and downs of MS. This fact makes it so difficult to cope with for sure. It sounds like you are comfortable managing it - a tough job each day.

          Can you suggest this book for your group? I'm really curious to know if non-disabled persons would like to read and discuss it. I believe many among us have 'hidden disabilities' or miseries that they don't discuss.

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          • #20
            I am indeed going to suggest this book for the book group I go to. It meets again in two weeks and I will bring my copy to show them.
            I’ve really enjoyed our conversation triumph. Thank you.
            Love
            Jnanda
            Secondary Progressive Multiple Sclerosis, Epilepsy, Head Injury, Chronic Pain Disorder

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            • #21
              Thank you too for this conversation. I appreciate it.
              I hope your book group agrees to read it and that they feel free to express their thoughts about it.

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              • #22
                Thank you too for this conversation. I appreciate it.
                I hope your book group agrees to read it and that they feel free to express their thoughts about it.

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                • #23
                  Thank you @triumph. I'm a big fan of Nadina LaSpina

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