Leaving Treadmarkz Across the Universe

Sometimes You Need Not Look Beyond Your (Extended) Family

with 2 comments

by Treadmarkz

In a recent post I made reference to “support groups” amongst people with any given disability, and how I hardly ever met anyone with my disability, spina bifida. Interestingly, I have been fortunate to make connections with some really interesting people this year already, including a cousin of mine who I did not know I had until a few years ago. Even since learning of his existence, I haven’t seen much of him because he lives in another state. I added him to my Facebook friends list and occasionally commented on his posts, but really didn’t get to know him. But then recently I was flipping through some pictures of him on his page, and I found one which showed clearly that he was in a wheelchair. I did not know him to be in a wheelchair, and nobody ever told me anything had happened to him. So I asked him. And he told me he, like me, has spina bifida at the L-2 level.

Naturally this shocked me that he had spina bifida. Why hadn’t anyone in my family told me this? It would have been nice to know that I had another person to talk to about it. Turns out he himself did not know he had spina bifida until he was 21 when he started having medical problems. He’s had his ups and downs and has had times when he could still walk with braces, but he does use a wheelchair.

We both had doctors who told us (or in my case a doctor who told my parents) that our case would be much worse than it turned out to be. It is encouraging, and horrifying at the same time when you see how wrong doctors can be. But they’re only human. One doctor said my life would not be worth living, and a doctor told my cousin that he’d be paralyzed from the waist down by now but his paralysis is really just large areas of numbness in his bottom half.

Ever since finding this out about him, it has been great exchanging war stories – how we both struggled with math just as the doctors said we would (though I think I was much more hopeless in this category than he was).  But mostly we have discussed medical problems. Songs of our scars, ghosts of operations past. And he told me that he will be having an operation in the future which will put him in his wheelchair for several months. I let him know about how I “did my time” when I was in a body cast or had a broken leg at different times as a teenager. Made some suggestions on how to make the time go by and avoid letting your spirit hit the bottom of the barrel.

As I wrote LONG ago in this blog, many people (including John Mellencamp) have spina bifida but can walk. But I never knew of a case where someone did not know they had the disorder until adulthood. It’s been nice hearing about yet another of the various experiences people have had with spina bifida, and I have been happy to be able to give my cousin advice. I look forward to continuing our correspondence because I am sure we both have something to offer each other.

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2 Responses

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  1. Love this. It’s great that you found support through your cousin. I have Cerebral Palsy, but often people think I have spina bifida because of the curveture of my back. I’ve discovered that it’s really great to be able to talk to people who’ve been there or are able to understand you. I’m actually writing a book right now about how I’ve overcome the obstacles of living with CP and how it’s possible to love your life though you face constant struggles. It’s been an emotional process, but I think it’s what I need to do.
    So, I know where you’re coming from completely. Life sucks and it can be unfair, but we don’t really have a choice but to just face it head on, ya know? 🙂

    ameliaclaire92

    February 10, 2012 at 11:57 AM

    • Amelia, I appreciate your comment and I am glad to know you are getting your story our there. Life may seem unfair but I disagree that it “sucks”. You may be interested in reading a posting of mine that I wrote just a couple of days ago called “A Real-Life Serenity Prayer” its kind of on the same topic.

      treadmarkz

      February 10, 2012 at 12:03 PM


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