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

Saturday, August 30, 2014

Darkness and Light

A few weeks ago my sister, who has been tirelessly dedicating herself to planning this year’s NDF gala in November, asked me if I’d be willing to speak at it.  I told her that of course I would. That I am always willing to contribute in any way she or the Board thinks would be helpful in terms of raising awareness and raising funds.  She told me she’d get back to me once they had decided on the program.

This morning, as I was reading books in bed with my two boys, I spoke with her and  she told me that they had decided that they’d like me to speak.  My first response was, “Are you sure people aren’t getting sick of me?” She quickly assured me that it was a well-thought out, group decision. Once I got over that momentary insecurity,  my next internal emotional response was actually somewhere in the neighborhood of enthusiasm. Giving a speech about living with my disease at a fundraiser to over 500 people is such an opportunity. A gift really- to be able to reach out to that many people, to educate them about what this disease is and does. And for me to just be able to perceive a sense of control,  in such an out-of-control experience, by actually doing something that could potentially make a difference truly is exciting.

So I snuggled with the boys some more, texted my unofficial speech-writing partner Gabrielle (sorry, but at some point I simply have to give credit where credit is due) and got in the shower to start my day. My morning shower is often where I do a lot of my thinking. And in this morning’s shower, I was inundated by all of the thoughts of what I might include in this year’s speech.  Should I talk about how hard it’s been to lay down new tombstones, like not being able to safely walk outside barefoot anymore or having to wear sneaker’s full-time at my office now? Should I talk about how difficult it was for me to commit to going to my 25 year 8th grade reunion which is happening next Saturday night because I was (and still am a little) terrified of what it will feel like to go back in time and mourn for my innocent, carefree 8th grade self who had no idea what was ahead of her? Should I talk about how desperately I am trying to hold onto my current reality of not using a cane when I know intellectually that using a cane would probably be the most sensible next move?

And on and on the thoughts and questions went. Not with any particular emotional tone attached to them, just in a brainstorming-for-a-talk kind of way. And then I got out, got dressed, kissed my boys good-bye and got in my car.  And within two minutes of starting the engine, I was assaulted by a stream of tears. I use the word “assaulted” because they took me by surprise and came on strong. I had just spent an exceptionally joyful morning with my boys. One of those mornings when everyone’s loving each other and getting along and being silly and I feel like I’m living the dream.  So naturally, initially I felt confused. It’s not that I tried to fight the tears necessarily, but I also didn’t think they were warranted. (Whatever the hell that means.) I hadn’t cried in a while. In fact, I hadn’t even blogged all summer. Life has simply felt so good lately. I have been so engaged in the joy of the moments that I haven’t felt the need nor inspiration to go beyond them.

But after a few minutes of essentially trying to argue myself out of my feelings, I surrendered. And it felt a lot easier. Of course I was sad. Of course I was sobbing from the depths of me. Of course I could only view the opportunity to give a speech from a rational, logical, intellectual perspective for so long before the reality of what I’m being asked to do and why set in. It’s the same reason why, without fail, every time I’ve given a speech about HIBM, I’ve had a complete breakdown sitting in my seat 5 minutes before going on.  In those most vulnerable moments, I am not walking around the edge of the vortex looking in while being bathed in the sunlight from above, the way I do on a daily basis.  Rather, I am thrust down into it, surrounded by the cruelty of its darkness.

And so this morning, I gave myself permission to accept that truth and I allowed the feelings to do their thing, all the while taking comfort in knowing that it was a healthy discharge of emotion and that it would free up some space. And of course, that I would soon recover and return to my baseline, where the light is always coming in from at least one direction. Because it seems that somehow, at least for now,  it always is…



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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