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

Friday, June 7, 2013

Last night’s fundraiser…

Last night I spoke to about 200 people at a Hadassah fundraising event. All of the money was going directly to fund HIBM research in Israel. 

Any time I am asked to speak about my experiences living with this disease, I have an immediate mixed reaction. On the one hand, I could and would never say no, because if I can contribute on any scale towards raising awareness and raising money towards a treatment or cure, then of course, I will do it. On the other hand, in that moment when I say yes, I know that it means in the weeks leading up to it, my mind will be focused on the disease in a way that will make it hard to think about other things, the regular stuff of life. I start to see my life through my HIBM lens and I don’t have the option of looking away, because I know I need to speak authentically about my experiences. I sometimes think it won’t take much out of me, because I figure I can just cut and paste from my blog and past talks. But of course, that never seems to be the case. Instead, I am up late at night, at times feeling bitter and angry that I can’t just lie on the couch and watch TV with my husband after a long work day because I’m on the computer, digging deep into feelings about this life, which I sometimes still can’t believe I’m living. I invest a lot of emotional energy in trying to figure out the best way to convey what it is like so that people can truly understand what we are all up against.

And then the night arrives. This time around, I was barely nervous. Surprising as that may sound, I chalk it up to simply having done this a few times and the slight desensitization that comes with repeated exposure to a stressful stimuli. One difference that made me feel a bit more vulnerable this time around was that I wore a short dress with a pair of sandals and my braces. I have spent years looking for non-sneaker shoes and it felt like a major triumph to be able to wear them out with a dress, despite the fact that it takes me about 15 minutes to maneuver my feet and braces into them.  I was actually feeling pretty good about having my braces fully exposed. But when I stepped out of the car at the valet and I saw the first few people staring at me, I wanted to run away. I wanted to shrink into nothingness. I stood there feeling naked. I wished I had worn pants or a long dress. But there was no turning back. I tried to arrive right before I was slated to speak, but there was still about 20 more minutes of cocktails. I decided to go find my seat. I walked up to the front row and sat down. I didn’t want to be sitting somewhere farther back where I could see rows of people in front of me. I didn’t want to have to nod or make eye contact with anyone.  And as people were filing in to take a seat and  the podium was being set up, I took a moment to take it all in and just like that, it all came crashing down on me. I started to cry uncontrollably. I  held my husband’s hand and stared straight ahead, past the podium into the dark night sky. I tried to take a deep breath, I tried to think of distracting thoughts, but there was no match for what was flooding in: What am I doing here? How did I get here? Is this really my life? Am I really here to speak about living with this horrible disease? Are all these people really here for me tonight? Is this really happening? Is this really my reality? I was desperately trying to pull myself together before it was my turn to go up. And eventually, I did. But not surprisingly, as I gave my speech, there was more where that came from. Because of course, there 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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