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

Thursday, February 28, 2013


Today marks the 6th international Rare Disease Day, a day dedicated to raising awareness of rare diseases among patients, non-patients and the scientific community. It is a day that would never have been on my radar had I not been diagnosed with HIBM almost 7 years ago.  I spent some time thinking about what I could post on my blog to mark this day. And to be honest, I wasn’t coming up with much. So when I mentioned this to my friend Gabrielle (you might remember her from a posting last year), she asked if she could post something for me. What she sent me tapped into something very emotional for me. Living with HIBM doesn’t just mean struggling with my own physical limitations and losses, but also working through feelings of guilt and discomfort around what I sometimes believe to be the burden of my disease on those around me. I am physically dependent on others and therefore needier of them in a way they will never be of me and sometimes that imbalance is hard to hold. When I really let the raw honest feelings in, I am aware that since having HIBM, I sometimes do not feel as valuable as I once was or maybe could have been. That somehow HIBM has diminished my worth or potential. I don’t share that here to invite validation that I still have “something to offer” despite my disease. I share it because as I reflected on what Gabrielle wrote, I wondered if maybe it can feel balanced. Maybe no matter how rare, ugly and disabling this disease is, whether I am walking or in a wheelchair, I can stay grounded and at peace within myself and always be able to share that with everyone around me. 
So here’s what she wrote:
Jen and I have a Rare Disease Day tradition of going out for drinks. I know it’s a hard day for her, another marker that another year has passed without an approved treatment or cure for this ultra-rare and terrifying disease that is slowly stealing her mobility.

But this year, I asked if I could also write a blog post for today. Admittedly, I feel a little shy about it. But you see how honest Jen is willing to be about her life with this disease. So if I admire that, perhaps I should get real too.

Jen and I have talked about what this disease means for our friendship. It has occurred to us that the arc of our friendship has gone at warp speed, in part, because of the disease.  There is a raw pain to it that necessarily, at least for us, has meant that we spend time in darker places than some friends might go. But also in a different way that has nothing to do with darkness.

I often think about a day last summer when Jen and I went to the beach together with our families.  When we planned it, we talked about going swimming in the ocean.  I usually just go in up to my knees with my daughters and run out holding hands with them when the waves come in.  I always have some lame excuse for not going in all the way – it’s too cold or the waves are too big.  But on that beach day, Jen looked at me and said, “so, are we going to do this or what?”  And what could I say?

So, I want you to picture it.  To get to the water we had to walk over the sand and down a pretty steep sand hill.  Walking on the sand is, of course, difficult for Jen.  I’ve heard her liken it to walking in quick sand.  In fact, she spent part of the beach day wearing her sneakers on the sand so that she could wear her leg braces.  So when we walked down to the water together barefoot, Jen held onto my arm.   Sometimes she calls me her human cane.

We got to the water and stood there ankle deep, clinging to each other.  Even the shallow waves can knock over Jen.  Some young girls with boogie boards were playing near us and they started to ride a wave in right toward us.  Jen said, “um, should I tell them that I literally can’t get out of their way?”  I thought about how real that was – how Jen could not move out of the way to avoid a crash into us.  The girls saw that we were not going to move and they were able to avoid us.  We took a few more steps in.  The water was cold and I was having my usual thoughts about bailing.  But then Jen looked at me and quickly announced “I’m going in with or without you.”  She let go of me and dived under the waves.  I paused for a second and then I dived in after her.  Then we were past the waves, swimming together. We looked back at our husbands and kids eating lunch on the blanket up the hill. It was one of those perfect LA days. We swam for a while, so happy to be together just talking about random life things.  I thought, why don’t I do this more? It’s ridiculous that I live 15 minutes from the ocean and I never really venture in.

When it was time to go back in, Jen started laughing and said something like, “don’t worry, but I’m going to get pummeled by the waves when we go in. I always do.” Her legs get weak in the water and getting back is kind of an adventure because she can’t really stand up in the ocean. Jen motioned for her husband to come down to the water so he could pull her out at the end.  I’m pretty sure she laughed the whole time, so then I was laughing and her husband was laughing.  I saw a woman staring at us.  I caught her eye and just gave her a big smile and she looked away quickly.  We walked back up the hill to the blanket – this walk was even harder for Jen because now her legs were weaker from the swim and it was uphill. We were so pleased with ourselves. We promised to do it again and we will.

The next day I told Jen how much I loved that swim.  I explained to her that when she holds onto me, I feel like I could just as easily be holding onto her for a different kind of balance. And so when she asked me recently whether the disease impacts our bond, I thought immediately of that day.  It is true that when we are close like that – in some way it is the disease that makes us hold onto each other in that closer way. But then we also get something else because we are closer. It’s like when we go out together and I drop her off at her house.   I want to walk her to her door.  “You don’t need to do that,” she says.  And I know that.  But I say something like, “but I want the dramatic hug at the door.”  I wouldn’t walk Jen to her door if she didn’t have the disease and if I didn’t want to be sure she makes it safely up those two steps that lead to her house.  But separate from that, I just like the hug – for me.

Let me be clear, none of this makes this disease any less terrifying. Nothing makes it less painful or less real. It’s not about me and some ocean metaphor. I get it. But Jen asked me what this awful disease does to our bond. I suppose it’s hard to know exactly because it’s never separated out from how we get through this life together.  But somehow the question takes me to the ocean.  The holding onto each other, the letting go, the diving in, the coming back in, the laughing at the waves.

“If you help me stand in the water,” she said, “we can swim together.”

I would not have gone in without Jen. And, of course, that has nothing to do with the disease. But maybe only in the way that Jen and I have this deeply mutual way of helping each other stand up or swim. And sometimes we will need that in the same way and sometimes we will need that in a different way. I can be her human cane and she can be mine.  And sometimes it will be balanced and sometimes it won’t be and that’s okay too.

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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