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

Monday, December 8, 2014


LTD. I’m not sure when I came up with that acronym, but it’s one I’ve been using for the last few years. I use it when I’m having peak moments. Moments when I’m at my happiest. When I am my most fulfilled. When I am overwhelmed by gratitude. When my soul is at peace.

LTD stands for Living The Dream. It’s shorthand for life is good. It’s this 3 letter code that I often blurt out to my husband or sister or best friend when I am literally living in what feels like a dream. We all have our LTD moments. Just look at people’s Facebook newsfeeds, they are often full of them.  The interesting thing about my LTD moments is that I often find them at the simplest, most mundane times: watching my husband make pancakes with our boys on a Sunday morning, bobbing in the waves on a beautifully sunny southern California summer day, holding my husband’s hand while watching one of our sons perform on stage. It’s in those moments when I feel like there’s nothing more I would want or need as long as I have this. But recently there’s been a dream, a simple one, that I had not been able to live out.

My boys are old enough now that they’re riding bikes and scootering all over the place. We live in a neighborhood that’s accessible to lots of shops and restaurants. Riding bikes with the family was always a vision I had for myself. Even before kids, as strange as that sounds. But I learned the hard way two years ago on Mother’s Day (when I suggested that we all go rent bikes at the beach) that I could no longer ride a real bike. (It turns out spinning at the gym does not translate into being able to cycle on the road.) So I had to make a choice.

If you told me when I was first diagnosed 9 years ago that I would one day have two kids and the only way I’d be able to join them on a family bike ride would be via an electric “mobility” scooter, I’d tell you I’d rather die. I’d tell you that sounds like a nightmare and kindly ask you to not bring it up again. And yet, a few days ago, this happened. (See video link below). I promise you I never would have imagined this to be an LTD moment. But I also never believed that I’d get here. I don’t mean to this level of physical disability, but rather, to this level of adaptability and adjustment to my reality. Intellectually, I am aware that we are designed to adapt to our circumstances in an effort to cope. We are evolutionarily programmed to do so in the service of survival. But emotionally, I never believed I’d ever be able to actually do it.  I was wrong.

Don’t fear the bad things from happening. Fear an inability to adjust and adapt to them. Be willing to reconfigure, reimagine. You never know where your LTD moments may be hiding.

PS. Keep in mind I never intended to actually share this publicly, so please forgive the quality!


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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