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

Monday, February 15, 2016

Pain is inevitable. Suffering is a choice.

I’m coming up on 10 years of knowingly living with this disease. An entire decade. One fourth of my life.

Throughout these past 10 years, I have mourned losses, adjusted to new baselines, adapted new ways of coping, advocated on behalf of patients and invested a tremendous amount of emotional energy in trying to keep perspective and stay in touch with the gratitude for all my blessings. I am proud of myself for tapping into resources within me that I never knew I had.  I am proud of myself for learning how to hold the pain and the joy in one hand. But also, I am exhausted. It feels like I’ve been at it for long enough. Too long. I want to be done with the mourning and just focus on the coping. I want this part to be over.

It would be so nice if that’s how it worked. You put in your time, you pay your dues, you demonstrate your unexpected resilience in the face of adversity and then you get to be done. And by done, I don’t mean done with all the challenges and disappointments that are inherent in life. Those are inevitable. I mean done with some to allow room for others. Because there are always others.

Life as an adult is hard. It’s hard to navigate the complexities of parenthood. It’s hard to grow older and confront the losses of loved ones as our mortality becomes more real. It’s hard to navigate the waters of the work-life balance and not feel exhausted by the swim. Add extra stressors to the mix and it can feel overwhelming. And then add ones that are chronic and it can feel despairing. That is what I think I have been in touch with lately, the despair.

I’m sick of the process. I’m sick of having to talk myself down from the panic that sets in when I get a glimpse of what’s coming based on what’s already here- more frequent and more serious falls, more difficulty taking heavy things out of the fridge, more difficulty getting out of a chair. I am tired of not knowing whether I should renew my office lease for another three years, tired of rushing to plan vacations despite them not being the ideal time/stage for my family simply because my physical abilities are on a ticking clock. I’m exhausted by constantly trying to pull myself back into the present moments. In each of those moments, I have to run through the five stages of grief at an accelerated pace. I have to constantly hope that maybe this disease won’t ever get as bad as I think it will. As bad as I know it can get.

But that hope comes with a cost. It’s increasingly harder to hold onto it in the face of continued progression. So rather than invest in the hope that I won’t get exponentially worse, I am going to try to start shifting my resources towards hoping that despite how much worse I get, I will still be able to hold onto me.

That’s what I’ve been afraid of all these years. Losing me. My smile, my upbeatness, my desire for adventure, my spontaneity, my silliness, my capacity to feel carefree, my ability to have fun. I have feared that I will become so disabled that I will no longer have the capacity to feel truly happy. And so as a result, I have desperately held onto a need for me to not get worse in the service of maintaining my emotional health. But that in itself is exhausting. The holding on.

I am going to try to loosen my grip. Let go of what I think I require to be happy and wonder if maybe there’s more to it. I will stop trying to convince myself that my body is going to be “okay” and instead accept that maybe it won’t be.

I do not perceive this as a defeat. I do not see this as me not having a positive attitude or me giving up on hope. It feels empowering, like an act of self-compassion, a way to preserve my strength and my emotional energy.

I am tired. I want to stop struggling to stay afloat in this sea of unknowns and instead gently turn over and try floating on my back for a while. I want to catch my breath. I want to feel the calm. I want to see where it takes me.

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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