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

Monday, June 2, 2014


It’s not like me to post two days in a row. I hesitated momentarily because so much of yesterday’s post, especially the piece from Gabrielle, was about being able to share the difficult feelings without feeling obligated to wrap them up with a bow. But I kind of can’t help myself.  It just so happens that last night was such an incredible gift…

I went with my husband to the Pharell/Bruno Mars concert at the Hollywood Bowl. In the days prior, I had felt distressed. Obsessing over why we spent all that money on a concert, especially at a venue that’s so difficult to get to and by performers whom I like, but don’t necessarily love. My rigid, rule-bound self kept reminding me that I only knew a few songs, so how was I going to really get into it?

And then we got there. Yes, it was hard to get there. Yes, my husband had to carry the back pack and the bag of food in one hand and balance me on his other hand as we walked. And yes, it was grueling getting up that hill, having everyone pass us on both sides, only to then have to climb the steps (without railings) to the 18th row of our section.  And no, I couldn’t really side step through a row of people gracefully. But I was there. And it was incredible.

I had forgotten. I had forgotten what it was like to listen to live music, to feel it in a way that simply doesn’t happen at home through a speaker. I had forgotten what a communal experience concerts are-joining together singing and dancing with thousands of strangers. I somehow had also forgotten how much I loved to dance (aside from in the comfort of my own home). I mean, I didn’t forget, it’s just been so long since I’ve been somewhere with music I can really groove to, that it hasn’t really been an issue. But the music last night gave me no choice. I stood up initially but sat down soon after. I was frustrated that I couldn’t do my usual moves. I couldn’t clap while also moving my feet because I had to use my hands to hold onto the seat in front me so I wouldn’t lose my balance and fall down. But then songs like, “Get Lucky” and “Blurred Lines” and “Hollaback Girl” (complete with surprise appearance by Gwen Stefani), came on and there was just no way. So I got back up and realized I could bend my knees a bit and lean forward and stabilize myself on the seat in front of me and then have my hands free. And I then proceded to spend the next two hours plus on my feet, in motion, with my newly adapted moves. And though my body was ruined by the end of the night, my soul was so nourished. I was there. And every time my mind momentarily wandered to the unknowns of the future, to thoughts of, “well, maybe you’re so happy now because you can still do some kind of dancing on your feet, but what about if/when you won’t be able to do that even?” I brought myself back to that moment-feeling the music, with the love of my life standing next to me and the great big sky full of stars above me- and I felt a kind of peace I haven’t felt in a long time. In that moment, I didn’t yearn for anything else. I felt free. I felt alive. And I felt grateful for being able to be truly mindful- present and engaged- in that moment. Because that is something for which I don’t need my physical body to be strong…

Oh and I also feel grateful for my renewed love of going to concerts.

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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