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Thread: 18 years

  1. #1
    Senior Member grommet's Avatar
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    18 years

    As Halloween comes closer I can feel myself tensing up. I've been feeling that way for few months now. This is the eighteenth year I've been using a wheelchair. June was the anniversary of me getting my first one, the one I kept in the garage while I pretended I didn't need it. It went that way for the next few months until my final dance/walk with denial, October 31st, 1995. All the bits and pieces may be better told in another thread but it's that Halloween night that was the "before" and "after" of my wheelchair life. That night there was an outdoor Halloween party and I wanted to go. At home that night I struggled with myself, going back and forth with denial. I wanted to go but thought I might see people I knew and I didn't even want strangers to see me in a wheelchair. I went out, struggling mightily, panting and wincing and almost totally focused on just standing and moving myself around. I hardly had a thought for the huge party. Then at some point I did seen an ex-girlfriend in the crowd. We were at least fifty people apart and I don't know if she saw me but I remember how relieved I was that she couldn't see me in the wheelchair. I was also barely able to stand, feeling awful and exhausted. I stayed in the crowd for a moment thinking about how these people didn't know I used a wheelchair (that was important to me) but also feeling bad about this lie. It was nearly all I could think of to get back home to my chair. I realized I couldn't go out without the chair anymore. It was really here, it had arrived. I never left the house again without a chair not in the 18 years since that night so that's the night I think of as my "chair date".

    I'm a little nervous with the date coming and what it reminds me of. Mostly of how ashamed I am of how I acted that night, lying really to no one but myself. Life is better than it's ever been and I am happy at how things have turned out but I am thinking about that night. The real shame of is it that it was shame that kept me out of my chair that I needed and because of it I missed enjoying a party. Accepting the help I needed opened my life up and has given me everything I have. Over the years, the more I accepted, the more I could do. Independence was on the other side of denying I needed help. I use all the equipment I need now (that I can get my hands on) and I accept all sorts of help from loved ones and friends. Eighteen years though. I wonder how much I've grown and maybe that's what's on my mind, a date is coming up to challenge me to ask myself what I have a accomplished in all that time. I suspect I will be thinking about all of this until the end of the month, my personal anniversary even my friends don't know about.

    I know CC is for SCI and I've always tried to respect that but I also know I am not the only one on Care Cure who is living with progressive disability that has me using a chair and for many of us we don't have a date for when we went from standing to sitting. For some of us it was gradual as we were part of two worlds. I bet there are some stories to be told about a month or a year long change until it was clear that the wheelchair was permanent. Get used to it. Halloween night 18 years ago stands out as that time I really fought that fight just inside myself and what was true.

  2. #2
    Thanks for sharing here. I know many people with progressive disabilities struggle with the issue of adding mobility equipment and other modifications to their lives; some feel it is "giving in" to the disability or letting the disability win. It can help to remold those thoughts into seeing the mobility equipment as simply a tool that you use to do the things you need to and want to do in life. Using a tool is not a weakness...if it was, we would all be pounding in nails with our hands or a rock instead of using a hammer and civilization would be a long way away. Again, thanks for sharing with our community. It is important.

    (KLD)

  3. #3
    Senior Member grommet's Avatar
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    Thanks for the support. This stuff ain't easy but what has made it work for me is talking to other disabled people. Over the years I don't remember one doctor talking about that but when I started finding other disabled people all these ideas, solutions and ways of living with disability came and everything got a lot better. As far as your idea about using a tool (wheelchair etc.) is not a weakness, I agree, but inside me the idea still resides that it is. I fight that. Always looking for that balance. :-)

  4. #4
    I know my mother found a great deal of support and help in issues like this through getting involved in one of the local NMSS support groups. She started out as a member about 5 years into her MS, and continued as an active member for the next 30 years. They met once a month, but she regularly corresponded with many of the members via phone and e-mail between meetings as well. Many became close friends.

    (KLD)

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