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

Friday, May 11, 2012


I am going to post something a little different tonight.

I have always said that one reason I am able to cope with HIBM in the way that I do, is because I am lucky to be surrounded by such a strong support network- family and friends who are there for me in any way I need them to be. 

Last week, I met with the rabbis at my preschool/temple to talk with them about how we can raise awareness and broaden people’s understanding of what it’s like to be disabled, from the preschool level on up. Just before that meeting, I was talking on the phone with one of my dearest, closest friends, Gabrielle, about what I/we would want to communicate to people about what it’s like for me and others in our community who are disabled. Ten minutes after we hung up, I received the following email from her, sharing with me what she imagined she would say to people if given the chance to talk about my disease. I can’t help but share it with a larger audience and after you read it, I think you’ll understand why…

“I remember one early conversation Jen and I had about her disease.  I told her, “I will never be one of those people who tells you ‘I can’t imagine.’”

I don’t believe in that expression.  We teach our kids that they can imagine anything.  Imagining isn’t just for conjuring castles or superheroes.  We can imagine suffering too.  I think we do it all the time.  But somehow, “I can’t imagine” has become this thing people say when they hear about something hard and think, “I don’t know what to say.  I don’t want this person to think I’m so arrogant as to say I can imagine what it’s like to stand in her shoes.”  Although well-intentioned, I think “I can’t imagine” only adds to the loneliness of something painful.  In our unwillingness to risk imagining for fear of getting it wrong, that expression says, whoa, I can’t go there with you, I can’t even talk about it with you. 

So I tell Jen, I will try my best to imagine.  I want to understand this disease. I want to read as much as I can about it. I am grateful for the opportunity to read what other HIBM patients write or draw about their experiences.  I want to listen to Jen tell me as much as she wants to share about what it is like to live and parent with this disease, what it is like for her body and her mind, what the small moments feel like each day, what she panics about in the middle of the night.  I don’t need to preface my understanding with a cap on its possibility – I don’t need to tell her I can’t imagine because I’m able-bodied.  Or I can’t imagine for any other reason.  Because I love her.  So, yes, I can imagine how hard it is for Jen to struggle to pick up her baby or to walk up her two front steps.  I can imagine how scary it is for her to slowly lose her mobility. 

I wish we all spent more time imagining each other. Then maybe we would keep each other better company.  Maybe we would help each other a little more and a little quicker and with a little less effort or awkwardness.  Understanding takes effort and risk.  Sometimes Jen and I talk about how people are afraid to ask her about her disability and disease, but unafraid to stare at her or look away.  Of course, most of them are no doubt kind, caring people, who just worry, “what if I don’t say the right thing? What if I say something that makes it worse for her? What if by acknowledging her disability, I make her think about it?” I don’t worry about those questions.  I know that everything I say to Jen comes from a place of openhearted, pure intention.  I know that nothing I say has the power to make this disease any worse than it is.  I know that if I ask her a question, she will answer it honestly.  I know that if I say something that doesn’t match what she’s feeling, she will tell me and then I will take that learning into our next conversation.  I also know that magic words don’t exist, even though there are times I wish for them more than anything, because let me tell you, I would give them to Jen.

Jen knows that I follow her into her dark moments to keep her company, not to make them disappear.  Same way she follows me into my dark moments, trying to imagine with me about my life, with no cap on her ability to understand me.” 

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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