LIVING WITH HIBM

What it's like to live with a progressive neuromuscular disease

Wednesday, October 8, 2014

Hank and Me

Never in my life did I think I’d find myself hanging out with Hank. He was simply not my type. I saw no reason to ever have to get close to someone like him. We just didn’t have a connection.

A couple of years ago, it seemed that everywhere I went, I saw Hank. I rebuffed his advances at first, but he kept pursuing me. Usually, that kind of perseverance is a turn on, but not this time. Personally, I didn’t find him very attractive and I felt like he’d never be able to keep up with my fast-paced life. If anything, he would interfere with it. Plus, he’s just kind of annoying. He requires a lot of attention, always needing to hold hands, always fearful of getting left behind somewhere. Not to mention, he’s totally socially awkward. He doesn’t know what to say when he walks into a room of new people. He’s only ever come out with me a few times, but he’s always so self-conscious. I try to tell him he has nothing to be embarrassed or ashamed of, but he’s still quite shy.

I have a love/hate relationship with Hank. But since he doesn’t seem to be going away anytime soon, I’m trying to remind myself of his positive attributes. He was helpful when I brought him along to get a pedicure the other day (always a challenge trying to navigate that process in my HIBM body), so that was kind of nice. He let me wear my somewhat impractical sandals on a date with him and that felt fun. And though my kids don’t really like having him around, together Hank and I like to pretend we’re in a Broadway show, à la “A Chorus Line” and perform for them with a little song and dance. We still need to get our top hats though.

Tonight, Hank will accompany me on a special journey. As some of you may know, I am leaving for a fairly spontaneous trip to Berlin, where HIBM scientists and researchers from around the world will be gathering at a conference. I want the folks there to meet him, I want them to see how gracious I am to allow Hank to be a part of my life. I want them to know that although Hank and I are becoming friends, I’m certainly not willing to befriend anyone else in his family. I want them to see that I’m being patient with Hank for now, but that my patience (and sense of humor) is certainly going to grow thin, very quickly.

So, without further ado, allow me to formally introduce you to Hank:

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Please visit the NDF website for more information about HIBM and how you can help fund a cure

Neuromuscular Disease Foundation

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