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

Thursday, May 9, 2013


I haven’t posted in a while.  That could mean one of two things: either things have been fine and I haven’t really felt an acute need to share emotionally intense thoughts or experiences or things haven’t really been fine and I’ve been trying (with all my might) to avoid confronting difficult feelings by detaching from all things HIBM, thereby making it difficult to reflect honestly and openly with myself about how it’s affecting me (let alone share it publicly). I wish I could tell you it was the former. In fact, until this past week, I think I convinced myself it was. Denial is such an incredibly powerful defense mechanism. It allows us to avoid, to suppress, to pretend. Its sole purpose is to decrease one’s level of anxiety. It helps us guard against feeling vulnerable and scared. But a lot of emotional energy is invested in trying to not let those difficult feelings in. And that is why it’s not always the healthiest nor  most sustainable method of coping. Because there’s only so long one can hold out in the fight against one’s reality. The energy required is too great. It always seems to win. And when it does, because there is so much that had been building up,  the defeat is that much more painful and draining.

Last weekend was my son’s 6th birthday party. There were 25 kids and even more adults. Every year since he was born, I have made a homemade birthday cake. I’ve done so for a variety of reasons:  my  new-found love of baking since having kids, the desire to try to hold on to a vestige of the good old days when birthday parties were simple and homemade in their entirety and because I simply enjoy the satisfaction that comes with overcoming the personal challenge of baking a cake. So this year, I had the plan all set. But then, a few days before go-time, I got sick. The kind of sick where one should be resting in bed, trying to recover so as not to prolong such an unpleasant state. But that was simply not an option for me. No way. I had my plan. I had been gearing up for this and nothing was going to come between me and that cake. So I spent the majority of the weekend in the kitchen, exhausting myself but not allowing myself to pause to question my motives. Not allowing any space to wonder why I was being so stubborn.  I had fleeting moments (like when my arm was fatiguing from having to manually double sift the cake flour) of awareness that this was not rational, but I had to just march forward. I knew it was illogical, but I couldn’t help myself because it was coming from a purely emotional place.

The party came and went and the cake was a success. But my physical state definitely was not. And the  boost I expected to feel as a result of all of my efforts was missing. I kept searching for it. Waiting to feel good, relieved, satisfied. But instead, I spent that night crying. I felt foolish, stupid. Because only then was I able to really reflect on what I had done, what was really operating behind the scenes, why I had pushed myself so hard. I called it stubbornness, I chalked it up to a joy of baking. But what it really was was desperate attempt to fight off the fears that haunt me during any kind of milestone event. “How many years will I even be able to do this? What if next year my hands are so weak that it won’t be a choice for me? How much longer until I won’t be able to shuffle around from point A to point B?”At one point, I pulled up an office chair on wheels to the kitchen counter because it was hard to stand for so long. I later realized I was essentially using a makeshift wheelchair. More thoughts from my subconscious whispering to me-“I don’t want to ever look back on these days and remember a time when I could have been so physically capable of doing something so simple like bake a cake for my son and I didn’t.” In those moments, I will do anything to  resist hearing those thoughts. So I shut them out by doing. Doing more and more. Not listening to my body that is begging me to rest. Not listening to my husband or sister who tell me to just go buy a cake from the supermarket. Trying desperately to not let my reality interfere with simply wanting to feel a pure and unadulterated joy around my son’s birthday. The “logic” goes something like this, “If I can still do things like bake a cake, especially when I’m under the weather, then I guess this disease isn’t so bad.”  Those are the only times that I get to pretend and deny. Because the times that I can’t, the times when reality is shoved in my face, they are too frequent and I don’t get to control them. Like when I had to line the bottom of my sneakers with duct tape just to enter inside the indoor gym at my son’s party because it was too difficult for me  to take my shoes on and off  like everyone else because of my leg braces. At the time, I barely gave it a second thought. Because how could I? I can’t afford to feel that kind of vulnerability out in the world. I have to seal over and move forward. But it’s still there.

It’s there when I have to walk across the street from my office every 6 weeks for a meeting with colleagues and realize that I’m ending up progressively farther and farther away from the curb where I need to be when the light turns red. It’s there when I now have to shuffle up the small incline to enter into school to pick up my son whereas at the beginning of the year I didn’t need to. It’s there when I see people stare at me more often (braces covered by pants) or even at all in a way that didn’t used to happen. During those times, I don’t get to avoid confronting the reality and feeling the pain that HIBM has brought upon my life. I don’t get to control any of it. The objective measures don’t lie. I don’t get to use my usual coping tools against the evidence. I don’t get to hide from it. I am fully exposed without my armor and it is exhausting and hard and I hate that I have to live it.  And that is why I have to continue to work towards getting to a place of true acceptance. Because the reality is, I won’t always be able to try to bake away the sadness.

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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