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

Wednesday, April 27, 2016

emetophobia* (of a different kind)

It’s like that feeling you get when you know you are going to throw up, but you don’t know when. You try to convince yourself that the nausea will pass. You distract yourself. You wonder if maybe your body’s just being hypersensitive. You are desperate to avoid the extreme unpleasantness that comes with vomiting up your insides. And yet, you know that you’re inevitably going to have to endure it if you want some relief. Once it’s over, your stomach will eventually settle. But it’s so scary. And so uncomfortable. You hate it. And there’s nothing you can do to stop it.

I’ve been trying to avoid the metaphorical throwing up for a few weeks now. In other words, I’ve been desperately clinging to denial. It sounds something like this…Am I really getting worse? No, I’m probably just feeling weaker because I’m recovering from the flu. Am I really having trouble lifting my arm up to hang clothes on the higher rack in my closet? No, this jacket is probably just particularly heavy. Am I really going to need to start using a cane full-time? No, it’s just the shoes I’m wearing today that are making it difficult for me to walk. When I get home, I’ll be sure to add them to the pile of shoes that no longer work for me.

I have become a master at this. I will go to great lengths to avoid coming to terms with the truth. I will distort my perception of my reality for as long as I can to avoid feeling the pain that comes with confronting it.

When I’m comfortably in denial, it usually means that my disease progression has slowed for a bit. It means I have moved through grieving my most recent loss of function and adjusted to my new limitations. It is during these glorious times of disease stability that my frenemy, Hope, pays me a visit. She says to me, “Sure, this is bad, but you can live with this. And, let’s not forget that there is always a chance that you won’t get any worse than this.”

I try not to get too close to her because I know she can hurt me, as she has so many times before, but I also feel reassured by her presence. She’s the one who helps me turn up the volume of everything else when I’m trying to drown out the voices of truth. The voices that yell out at me when I stand up from the our living room sofa, not wearing my leg braces, and I literally cannot take a step in any direction without losing my balance.
“Turn it up! Louder!” we say.

She’s the one who tries to help me breathe when the biologically-programmed panic of not being able to fight, flee or protect my young sets in. She tells me that even though I may feel as if I’m vulnerable prey, there are no predators to fear in my modern day life. I can and will continue to adapt. I will be responsible about enlisting help. And ultimately, I will survive.

But over time, I notice she’s not hanging around as often. She’s not there to help me in my quest to convince myself that it’s going to be okay. Changes start to set in. Painful experiences become harder to look past. New social situations present themselves and I realize I’ve lost any chance of trying to “fit in” or not have my disease be obvious. Those days are over. And eventually, the whispers become increasingly louder. That feeling sets in. I know it’s coming. I know I’m going to have to start to feel the sadness again. The pain. I don’t want to. I’ve just gotten comfortable here. I don’t want to feel sad. I don’t want to cry. I don’t want to live in the truth. It feels so bad. It feels so icky. Repulsive almost. I’ll do anything to avoid it.

And yet, I’ve been through this cycle enough times to know that if I want to get past it, if I want to reach the land of acceptance, there is only one way to get there.

We try to do everything we can to bypass the journey or even just make it more tolerable- binge on TV shows or food, get high or drunk, lose ourselves in work or just try to fall asleep and hope that when we wake up, we’ll have arrived.

But nothing can ever quite do the trick.
I know I have to let it all come up and out.
I know I have to stay in it until it’s over.
I know that despite it getting exponentially harder to settle back into the new baseline, there is no other way to keep moving through.

I also know that most of my blog entries are just collections of (sometimes overdone) metaphors trying to capture the pain that comes with moving through my own personal 3 stages of grief: denial-depression-acceptance. Sometimes, in these raw, non-distorted moments of truth, it feels as if the writing is theĀ one thing I have to hold onto. So, I guess I’d just like to thank you for holding onto it with me.


*emetophobia: an intense phobia that causes overwhelming anxiety pertaining to vomiting

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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