Monday, October 12, 2009

Surgery And Fears That No One Will Understand

My knee surgery is three weeks from tomorrow. And Jesus Christ I'm conflicted about it. On one hand , I can't wait. Especially on days like today, when I'm in excruciating pain, when I'm at least a 7.5 on the pain scale even through the vicodin. On the other, I have feelings about the surgery that are very hard to explain, but I'm going to try in this post.

In August of 2001 my life changed. I became physically disabled. I'd been mentally disabled for some years before and to some extant I guess I was physically disabled, too. My heart problems, my asthma, etc - invisible disabilities. My point is, I became seriously and visibly disabled. My ability to walk was, I was told at the time, irreparably impaired. And I've discovered in my time in the Disabled Community that there is a world of difference between those with visible disabilities and those with invisible ones. But more on that later.

In the past eight years I've become fairly active in the Disabled Community. I fight for Disabled rights whenever and wherever I can. In fact, I've become pretty militant about it. I am a Disabled Person. And I'm proud. But I'm getting surgery in three weeks that if all goes well will end my reliance of canes and wheelchairs. Why? So I don't hurt all the time.

I just want to not hurt anymore. Is that so wrong? Why do feel like some sort of Cripple Uncle Tom? It's not fair that I feel this way. I feel like I'm betraying everything I stand for. Well lean for and sit for. There's no reason anyone should have to feel guilty for not wanting to feel pain, and yet I do.

And then there's the identity issue. If I'm not the guy on the cane, who am I? I've been the cripple so long, if I'm not I don't think I'll know who I am anymore. I've tried to explain this fear to friends and family, even my therapist, and no one knows what I mean. They all think I'm being ridiculous. But this really bothers me. Sometimes it keeps me up at night.

And there's the reactions from the Disabled Community. I feel like like I'll be shunned. Yes, I'll still be disabled, I'll still be mentally ill and I'll still have tons of other medical issues, but I won't be visibly disabled anymore. And a great many visibly disabled people look down on invisibly disabled people. They're like the light-skinned of the community. They can "pass." As a friend of mine put it when I was talking to her about my fears regarding the surgery, the invisibly disabled are kind of like bisexuals. They don't fit with either group. Just as bisexuals aren't really gay or straight, the invisibly disabled aren't crippled, but certainly aren't not crippled either. I'm not looking forward to explaining to people that "Yes, I am disabled. I'm mentally ill." Having the visual shorthand of a cane is much easier.

The worst part is the surgery might not even work. There's a 25-33% chance that I'll end up worse than I was when I went in. That I'll have less ability to walk and more pain. I'll be using a wheelchair almost full-time. But these things have already been getting worse. If I don't get the surgery, I'll be using a wheelchair almost full-time in a year anyway. So there;s no reason not to take the chance. I have to try. I need to try. I want to not hurt. Even if it means I might end up hurting more.

But if it works, I hope the other crips forgive me. And I hope I forgive myself.



Right now my bipolar is Kinda Level.
Right now my pain level is at least 7. 5 through vicodin.

2 comments:

  1. regardless of the "cure" for a disability, fear of the unknown can and will make it worse. fear makes us do strange things, things that maybe we thought we never would have thought for ourselves. fear keeps us from doing things we never thought possible.
    i have never walked with a cane. i have never needed to use a wheelchair. i have never needed surgery to fix myself. but making the choice to take a chance at making myself better... well, i have done that... and i do get it. it is scary knowing that one day soon, you will not be the same. you might be better or worse, but however you turn out, it is different. and that is where the fear can take over.
    you were brave enough to not take no for an answer.
    you were brave enough to make the decision to have surgery.
    you will be brave enough to let whatever change mentally and emotionally that is coming, happen. yes, your identity will change, but it will be for the better.
    you deserve the change, you deserve to give yourself the chance to feel better once in a while.
    i, for one, and really proud of you for getting this far.
    good luck with this.

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