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

Tuesday, April 7, 2015

Where to invest

I haven’t written in a while. Not since January in fact. Lately I’ve been spending some time thinking about why that is.

It’s definitely not for lack of difficult or painful experiences related to living with HIBM.  I have come to realize that such experiences are built into my daily life and will continue to be a part of my daily life, for the rest of my life. In some ways, these last few months have been harder than most- I have attended a conference where I met a handful of other HIBM patients, all of whom were wheelchair-bound, except one. I have stepped out into the world now on numerous occasions using my new cane, forcing me to not only confront the fact that I am getting physically weaker, but also forcing me to endure extreme levels of self-consciousness and emotional discomfort. A level of vulnerability I have not experienced until now. And I recently returned from an annual vacation destination where evidence of my progression, as manifested by my difficulty in climbing up the same little hill I’d been able to climb so much more easily in years past, made it extremely challenging to stay calm and not fast forward to the day I won’t be able to climb it at all.

So why then haven’t I been depressed? Why haven’t I been living in that pain? Why hasn’t it been consuming me? How is it that I can have so many days, more days than not, when I feel truly, genuinely, authentically happy? It’s almost hard to believe. Or maybe it doesn’t seem possible. I can assure you though, I’m not one to minimize my feelings or deny my truths. When I feel sad and overwhelmed, I let it in and I put it out there. This phenomenon-experiencing true joy and inner peace despite such upsetting and at times, terrifying circumstances -is one that even I have trouble understanding. But here’s how I think it works.

If you spend less time and energy fearing the bad that may happen and instead invest more emotional energy in cultivating the good that is or can happen, then, when the bad stuff strikes, as it inevitably does, it will only take a part of you rather than the whole of you. It may derail you off your tracks,  the ones you just assumed you’d always travel on, but you will take with you all that is good in your life. That part is still intact and gets to come along for the ride, no matter how scary or unpredictable it may be. The message here is not one of, “look on the bright side” or “just be happy for what you have and don’t dwell in what you don’t have,” because of course, one never has to choose. We can be grateful for our blessings  while simultaneously feeling angry for our losses. What I’m referring to is something different. It’s not about how to think about your life but rather how to live your life. Invest in the aspects of your life that you can control. Cultivate meaningful relationships, seek out true love- familial, friendly or romantic. Find fulfillment in how you spend your days. Don’t let others interfere with your vision of what you want your life to look like. Because when loss occurs or when tragedy strikes or when circumstances beyond your control arise, you will lean back into that same life,  just with the addition of this new scary dimension. It adds a challenge. It doesn’t subtract the good. But if you don’t have the good, if you don’t invest in it, if you don’t seek it out,  then the bad can easily go from an added dimension to the whole of it. It can consume you. The imbalance can be so great that no matter how many steps back you take and look in, you can’t find that perspective you’re so desperately seeking.

I sometimes used to tell myself it would be much easier if I were a miserable person with such a miserable disease. That being such a happy person with a miserable disease makes it so much harder to cope because the cognitive dissonance is too great. But the truth is, being a happy person with a miserable disease is what allows me to be just that.

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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