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

Friday, July 14, 2017

Permeable Membranes

I have been a feeler of feelings for as long as I can remember. When I was young, I used to write long, sentimental birthday and Mother’s and Father’s Day cards.  My sister used to tease me (still does), about my overly expressive, touchy-feely “treatises.” On Thanksgiving, I was always the one (still am) to make people go around and share what they were thankful for in the past year. Or on Shabbat, what they were grateful for in the past week. I have about 15 diaries from my youth, sitting in my garage, all filled with pages and pages of feelings.

I never realized what a tricky business feeling feelings was until I got a bit older. Though I was never one to cry at the drop of a hat or while watching a sappy commercial, I definitely learned early on that I was quite sensitive, more so than others. Whereas some people would feel sad at the end of a movie, I would be crying in the theater long after the credits rolled.

I started to become envious of people who had thicker skins. People whose membranes weren’t so permeable. When I went off to college, I struggled. I couldn’t find “my people.” I felt lonely and lost and overwhelmed academically. I called home countless times, crying.  I felt weak. I longed to be more resilient in the face of life stressors. What felt like a blessing at a younger age, started to feel like a curse in early adulthood.

Fast forward 10 years and at age 31, I was diagnosed with HIBM. Of course, in an instant, every life stressor I had ever experienced shifted way down on my newly recalibrated scale. I had no defense against the sadness, fear and emotional trauma. I cried and cried and cried. I felt the enormity of it in a way that people around me didn’t seem to. I couldn’t “look on the bright side” nor see anything positive in it.  I kept telling my husband that I wasn’t cut out for this sort of thing. That I wasn’t wired this way. That I wasn’t equipped with the proper tools to cope with something of this magnitude. I worried that the weight of it would crush me.

Five years into my diagnosis, I mustered up the courage to write my first blog post. I started publicly sharing my scariest, most painful and darkest moments. The really depressing ones. The really uncomfortable ones. The really emotionally intense ones. Just as I’m not so good at defending against what feelings come in, I’m also not so good at defending against what comes out. That’s not to say that it’s easy for me to open myself up. After publishing many a blog post, I have immediately regretted it. Did I share too much? Go too far? Turn people off? Bring people down?  I try to hold that discomfort just long enough to remind myself that the alternative discomfort-the one that comes with keeping all the pain locked up inside, the one that feels so overwhelmingly lonely- that one is far worse. And more destructive.

People often fear being “pitied” if they were to let others in on their struggles.  I’ve never quite understood that fear. If the basic definition of pity is “the feeling of sorrow and compassion caused by the suffering and misfortunes of others,” then why is it such a bad thing? I actually rely on other people’s compassion, both on a practical and an emotional level. Maybe I wouldn’t need to so much if I didn’t have this disease. But we are all vulnerable and in need of compassion, disease or no disease. If you are afraid of being “pitied,” then perhaps you’re afraid of people holding up a mirror to your pain and seeing what they see. Only when you can get comfortable with your own suffering,  can you accept other people’s compassion for it. And as a result, life can feel a lot less scary and a lot less lonely. At least, that’s been my experience.

For a long time, I was surprised and even confused by people’s comments on the blog. Words like “strong” and “inspirational” and “brave” were being used describe me. Me, strong? Just for feeling my feelings?  It was so contrary to the perception of myself I had carried around for so long.

Then one day, I understood the true definition of strength. Strength is not about being able to “see the positive” or “look on the bright side” or push past the pain or bury it deep and move on. Strength is having a non-distorted perception of how bad things really are and accepting it; locking eyes with the beast of loss and pain directly without turning away. Strength is being able to let in the heaviness of the sadness, fully and wholly, and still, keep moving.

Sometimes I wish I didn’t feel my feelings so deeply.  I wonder if my life would feel easier. But then I wonder, if I didn’t make room to feel the depths of my pain, how then could I make room to experience the height of my joy? If I didn’t grieve for what I don’t have, how could I hold the extreme gratitude for what I do have? If I can’t have compassion for myself and make room for all the feelings, then how can I make room for anyone else’s?

And finally, if I can’t let loss all the way in, how then can I possibly let love all the way in? True, pure, unbridled love?  What good is a life without love, really?

A few weeks ago, I woke up in the morning of my birthday to this card written by my husband. I can’t quite come up with the words to adequately describe the experience of what it felt like to read it. But as I let all the feelings come rushing in, one thing was for certain: I’m not planning to stop feeling my feelings anytime soon.

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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