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

Tuesday, August 27, 2013


I’m tired.

I’m over it.
I feel like it’s enough already.
I’ve risen to the challenge, I’ve tapped into my inner emotional resilience, I’ve gained invaluable coping tools and I’ve been given the gift of learning to truly appreciate what I have. 
But now I’m  ready to be done. Ready to be done with this disease.  I’m ready to go back to my old life where I wasn’t “amazing” and insightful but rather just a regular person with regular life stresses. I want to remember what it felt like to care about losing 5 pounds to fit into my “incentive jeans” or to be able to watch a sad movie without having it hit me so hard because I relate almost too well to it.
I wasn’t planning on blogging tonight, but I received a phone call today from the prosthetist informing me that my new, unbelievably expensive custom- made silicone AFOs have arrived from England and they are ready for me to come try on. I have been fantasizing about these  since I was casted for them a month ago. I have been fantasizing about the world of possibilities they may offer. They are essentially like tight silicone socks that you velcro onto your feet. And they only come up to your ankle. That means there is no hard black carbon fiber riding up the back of your lower leg. That means you can squat down, sit on the floor with your legs crossed, wear them under your socks and shoes and most importantly for me, walk around “barefoot.” I realize I’m using the “you” pronoun, probably because I’m so terrified that they won’t work for me or be the magical addition to my life that I’m hoping they will be. It doesn’t feel safe yet to believe they will do all of these things for me. 
I am trying to be excited, but the excitement is competing with a sense of doom. Because for now, it’s just a different kind of brace, but next time it might be an appointment to be fitted  for a cane, then a walker, then a wheelchair, a neck brace, hand controls for the car, railings for the shower and an adjustable bed to help getting up easier… These aren’t irrational fears that I have. These are the realities for so many of my fellow HIBM patients. This is what patients post  about on our Facebook support group-questions about who has used what kind of assistance device, who has noticed arthritic pain in their joints, who knows how to get disability benefits from the government and on and on.
The worst part is, I am someone who is regularly forced into this intense, dark emotional space. That’s not who I am. At least it’s not who I used to be. I miss being able to be my happy, carefree self at times like these. I am still reeling from the joy that was my 20 year high school reunion over the weekend. Seeing so many wonderful old friends. Some of who didn’t even know about the direction in which my life had gone. I guess I didn’t realize that night how refreshing it was to have my HIBM self be somewhat anonymous. To be lost in my old self, hear memories about her, be reminded of her. I guess I just wish the high from that could have lasted a little bit longer…

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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