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

Friday, November 27, 2015

Thank you

I was going to post yesterday, but I chickened out. I was going post about how, for someone who feels in touch with gratitude on a regular basis,  it was disappointing to not feel it to the degree I normally do on Thanksgiving.  Thanksgiving is like my gratitude Superbowl. It’s when we are all so in touch with all the ways in which we are blessed.  But I haven’t been feeling as grateful in this past month.  It sounds so taboo. I guess it’s not that I haven’t been feeling grateful,  it’s just that it’s been harder counteract all that I’m not  grateful for. And yesterday,  I didn’t want to be a buzzkill. Or even offend anyone. So today,  I wanted to share. I wanted to tell you about some experiences that have felt hard in this last month. And where I have ultimately found the gratitude.

In October, my husband and I got away to Portland for the weekend. It was so great, except for the sad realization, once and for all, that I can’t really explore a new city on foot the way I used to, the way I wish I could.  Even stepping up onto a curb has proven to be a challenge. While we were there, on that Saturday night, we waited in the hour-long line in the drizzling rain at a famous ice cream shop. We were having so much fun, except for when I walked out of line to go to the bathroom, slipped and fell, had a crowd gather around me, heard a bystander so sympathetically say, “oh no, she has a cane” and somehow ended up getting helped up by a police officer.

A couple of weeks ago, I attended an annual psychopharmacology conference at the Skirball. It’s always a wonderful opportunity to see old friends from residency, but this time, it was also an unwelcome opportunity to see how much I’ve progressed since the last time I was there. I can handle the more “minor” challenges like difficulty clipping my name tag onto my lapel or trying to keep up with everyone while heading to the luncheon area. But sitting down for lunch and watching everyone at my table so effortlessly cut into their food, while I sat their acutely aware of how awkwardly I now hold my utensils and struggle to cut my own food, did not feel like something I could handle. It took all of me to not flash forward to a time where I might have to sit down to a meal and ask the person next to me if he or she wouldn’t mind cutting my chicken for me.



If you’re still here, if you’re still reading, if you are still with me, I am grateful for you.
I have tried to hold these experiences quietly within myself. But I can’t. I can’t hold them alone. They are too heavy. They will crush me.

Thank you for holding them with me. Thank you for not running away out of discomfort or fear. Thank you for receiving my invitation and for choosing to attend.

I am grateful for you and I am grateful for the one thing this disease has forced upon me- the strength to share and be vulnerable. Because if I didn’t have it, if I couldn’t do what I’m doing right now, I would be so lonely. And the loneliness of carrying this by myself would disable me in a way that, unlike all the rest, I wouldn’t be able to adapt to.

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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