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

Friday, June 5, 2015

What goes up must come down

I’ve had a good few months. Like, really good. If you’ve hung out with me lately, you’ve probably had the fleeting thought of, “Um, is Jen on stimulants?” As in, I’ve been talking fast and thinking fast- what I jokingly refer to as feeling “high on life.” And though the only stimulant I’ve been using lately is coffeeI have managed to sustain such a happy baseline and keep such a positive outlook. I have whispered things to myself like, “maybe in my lifetime there will be muscle transplants.” Or even, “I’m sure the FDA’s going to approve a treatment any day now.” Basically, I have been how I think people hope that I am- feeling grateful and happy for all I’ve got. Feeling blessed to have an incredible husband, feeling joyful to have two healthy boys and feeling relieved to  have a job that so suits my physical limitations. I have been a model happy, brave person.

But what if I want more? What if I’m sad that I can’t have all of that and my body too? Would that be okay? What if the line I’ve been telling myself these last 9 years-the one that says I’m sure the universe just had to give me this disease in order to give me all the amazingness in my life-isn’t true? Or the one that says, “Well, everyone’s got something, right?” Sure, everyone’s got something,  but everyone’s something isn’t as bad as this something. And I recognize that mine definitely isn’t as bad as others’. But I’m starting to wonder if maybe, in fact, it didn’t have to be this way. That I wasn’t given this disease to be an advocate for it or to “be the one who could make a difference.” That the perspective I would gain from living in a constant state of uncertainty couldn’t only be achieved by confronting this kind of adversity. But what if, what if that’s complete bullshit? What if I would be the same person, with the same personality, values, gratitude, etc without this disease? What if I would have an amazing husband, healthy kids and a great job and my physical strength? What then? How am I supposed to cope with that? What am I supposed to tell myself in the darkness of the night when I’m having trouble rolling over from one side to another? Or when I can’t wiggle my toes? What then can I desperately grab onto for reassurance? That this is it? That this is actually happening? To me? At this age? Well, fuck that.

I’m sorry. For the language. I’m not sorry for what I’m saying. But I wish it didn’t have to be so intense. Painful. I know, it’s so uncomfortable. But these are the realities we need to hear. These are the feelings we need to let ourselves feel.  As much as I wish I weren’t crying right now, on a Friday night at 8:15pm, I am equally as relieved to know that once I purge these feelings tonight, once I let them take me over, once I carve a hole for them to pour through, I will then probably laugh at a funny movie with my husband later and have a really good night’s sleep. Because that’s what happens, every time.  Not because I have some magic power to turn on and off my feelings, but because I can stop investing in trying to convince myself that it’s fine or that it’s going to be fine and instead invest in making room for all the scary dark feelings to move on through. This is essentially what therapy is. This is what I have dedicated my life to- teaching people to learn how to feel their feelings. You’d be surprised at what an epidemic difficulty feeling feelings is.

If you’re wondering where all of this is coming from, in three days I will be leaving for a week long vacation in Hawaii with my family.  I mean, is there anything in the world that sounds better right now? Except that rather than feel the excitement, I feel the dread of not knowing how I’m going to navigate the beach every day. Especially after seeing how hard it was for me last weekend here in LA.

It would be so nice, just once, to not have to hold both.

I always know that this is the cost of letting myself feel so happy for so long. But I always forget how rough it is to come back down.

The thing is, it’s still worth it. And I have to believe it will always be.

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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