Ever Put a Condom on Your Foot?

Posted on January 16, 2014

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Quick Note: I write about the stigma of disability. That’s what this post is about. I also try to find ways to ease the stigma of disability. One of those ways is through my #YesJCrewCane petition. I would be so grateful if you took a moment to sign it. 

Ok, I know what you think. You think I am wearing a see through sock. Guess what?!? You’re wrong! That’s a condom on my foot. An NYC Condom. They’re free at the hospital. From afar they look like buckets of candy. Up close, they’re condoms. I’ve never taken one before (because I’m a lelele lesbian falalala). When I took it, I told the lady behind the desk “It’s not what you think, it’s for my foot”. She didn’t say a word. I clearly shouldn’t have said anything. Lesson learned. When taking condoms from the trick-or-treat bucket, don’t make eye contact with the receptionist. Don’t explain yourself. 

Let me explain myself. I got a nerve and muscle biopsy about 9 months ago. The neurosurgeon who performed the procedure has quite a reputation. Upon meeting him, he told me in the same breath that the simplest procedure a neurosurgeon can do is a nerve/muscle biopsy and that he’s the very best at it. So I thought to myself ‘ok, so you’re the best at the easiest thing’? I may have even asked him this. But don’t worry, it’s fine, he can take a joke/valid question.

On the day of the procedure he showed up two hours late. We knew he had arrived before we saw him. He announced to everyone that purple is his favorite color. That he looks really good in purple. Then he appeared before my eyes… tall, gorgeous, windswept hair, purple shirt. He starts prepping me, and I ask him why he likes purple. He says “people think it’s a girly color, but it’s really just red and blue mixed together” and I say “I think you just drew on the wrong ankle” and he says “oops” and scribbles out the sharpie redrawing the incision on my right ankle.

Fast forward 9 months later. There’s a condom on my left foot. Dr. Purple told me the numbness would subside in 6 months, that he had stitched the nerves back together. They regenerate. But I have CIDP. So that hasn’t happened.

The numbness has always been hard to explain. I can feel things below the skin, but not on the skin. I can feel pressure. I’ve always visualized the feeling as a condom over my foot. So I put a condom on my left foot to compare the feeling.. and OMGeeee my feet feel exactly the same for the first time in 9 months! So here’s my recommendation to you… before getting Sural Nerve Biopsy, put a condom on your foot.

This isn’t the only numbness I deal with. Here are some highlights from an email I sent to SuperNeuro a few days ago: “I was telling SuperShrink that my skin has taken on a completely new texture lately. I was saying it’s soft and silky like the skin of a goddess. I was trying to tell her how strange the feeling was and that I continue to startle myself any time I touch my skin (which as a human being happens fairly frequently). Of course SuperShrink, as a psychoanalyst was like ‘that sounds sensual’ and I was getting frustrated with her because I was like it’s not sensual at all, it’s fucking trippy. We couldn’t get on the same page, so I dropped it and we talked about the Mayo.”

Anyway, I complain for a few more paragraphs and now we’re at end of the email. After I ask Wifey to feel my newly amazing skin (and she mocks me) I realize I don’t have the skin of a goddess… I’m numb. EVERYWHERE. To test it out, I rub sandpaper over my hands and face and it feels fuzzy.

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Smilin’ so pretty. And yup, still fuzzy. And that’s medium grit sandpaper.

SuperNeuro wrote me back and said… well I’ll paraphrase… “duh, you have a Small Fiber Neuropathy, this numbness will flare up from time to time”. (SuperNeuro would NEVER say duh… that’s me paraphrasing.) I wanted to write back and say “You’re not being very Super right now”, but I didn’t, so I’ll send her this blog post instead. I want her to do the impossible, I want her to fix it. She knows that. I know that. Since she can’t, I’ll try to demonstrate my misery by attempting to make her overworked under-appreciated self miserable too. Please forgive me SuperNeuro!

Side Note: If you Google ‘Small Fiber Neuropathy’, ‘Small Fiber Christmas Tree’ will come up as you are typing. It felt important to include this.

Anyway, I’m moody. Real moody. I want to be passive aggressive with everyone I encounter. My body isn’t feeling like my body these days. It clearly isn’t acting like my body. My sense of taste is lacking, I have some respiratory issues that leave me breathless.

So to Wifey, to SuperNeuro, to Dr. Purple, to SuperShrink, to everyone. I’m pissed, but not at you. I’m not pissed at me either. I’m pissed at my body. My body is not me these days. We’re separate and can’t seem to find our way back to one another. This makes it more difficult for me to get on the same page as you. But I have a sense of humor, so I will continue to try. And I hope you will continue to try to relate. So go out, buy yourself a condom, and stick it on your foot. Give me photos, make me laugh!

Thanks for all your support. Mayo Clinic, here I come!

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