Sometimes people can be so inspiring. I have a friend who was diagnosed a little more than 4 years ago with something called Hereditary Inclusion Body Myopathies (HIBM). It’s a very rare and extremely devastating disease. Basically it is a progressive neurologic disease that attacks any and all muscles in the body and can eventually lead to paralysis. It is mostly seen in the Persian Jewish community. And there is no treatment or cure. In order to try to fund research to find treatment options for HIBM, my friend’s parents started a foundation, The Neuromuscular Disease Foundation (NDF). They just had their annual fundraising gala and had about 800 people in attendance.
Now my friend is a very outgoing person. But to get up in front of 800 people, all dressed up and beautiful looking, and have to give a 15 minute speech on how HIBM has affected her life, seems like so much to ask. But she did it. And has given a speech for the last couple of years. She is so brave. She is candid in these speeches and reveals things that people without this disease wouldn’t dare reveal: insecurities about herself and her life that are now magnified because of this disease. But she does it with a poise and grace I could never have. Her muscles have wasted away so much that it is hard to open and close a car door. She can no longer run after her toddler. Even lifting her head in the morning is now done manually. I can’t imagine dealing with this every day. This knowledge that, most likely, her muscles will continue to waste away with no pre-set idea about which muscles or when seems crushing and is–but she doesn’t let it crush her spirit. There isn’t a real end-point in this disease progression besides death. The diaphragm, after all, is a muscle.
It’s hard to know what to say to her. So I listen. And she knows that I’m there for her when and if she needs me. But can I ever really know what she is dealing with? Probably not. And selfishly, I hope not.
I just watched her speech from the gala and it was a timely reminder for me to really cherish what I have. I am, for all intents and purposes, healthy and am able to move around with ease. And although I sometimes wonder when/how I’ll die, it’s not an ever-present thought in my mind. I have freedom to plan for the future. A certainty that I’ll be able to lift my head without the help of my hands in the mornings.
I feel lucky to know this beautifully strong woman.