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

Wednesday, January 14, 2015

Riding the Train

Every year for winter break my older son has 3 weeks off from school. And every year I feel a bit annoyed about it. It just feels like an unnecessarily long period of time for winter break. But this year I decided that we would make the most of it. I planned not one, but two vacations.  That’s sort of my new thing- planning vacations. A coping strategy I adopted in the last couple of years. It’s not only the experience of being away that is so therapeutic, but also the act of planning and the anticipatory excitement that sets in leading up to the experience. It doesn’t have to be and hasn’t really been anything exotic or extravagant, (my husband’s indulgent 40th birthday weekend in Big Sur an exception). Just something to take us- or me mostly- out of the routine and out of my head.

Our first trip was to Palm Springs where we reunited with our dearest and most favorite friends from medical school, who flew all the way out from NYC. We rented a fabulous house, met up with another one of our friends and her family and then spent the week having a blast. We embarked on various adventures while we were there. There was so much joy- the kids could not have been happier together and we adults could not have been happier reconnecting. It was just like old times. Almost.

If I had written a blog post from there, I would have been so proud to share that I didn’t feel sad or cry once while I was there. Not when we rode up the tram to the snow and I spent most of the time inside drinking hot chocolate while others were out frolicking in the snow and walking around. Not when we went to Joshua Tree and while everyone was climbing boulders and running around, I slowly mulled around with my walking sticks. And not even when we were hanging out in the pool and every time I wanted to go in the jacuzzi I had to wait for another adult to come and escort me. Rather than being able to just hop over to the jacuzzi like everyone else, I had to get out and walk all the way around in the cold. (And no, the fact that I’m talking about a luxurious Palm Springs vacation is not lost on me.) Instead of feeling sad or mourning losses, I really, truly felt at peace. I was definitely in my head, but not in a reactive way. In a more mindful way.

For example, I simply observed my friend Gail as she jumped at the opportunity to go up and down the fairly-steep pathway in the snow at the top of the tram not once but twice. I imagined myself doing the exact same thing. (Gail and I share the same love of exercise-any time, any place.) I imagined what it would have been like to accompany my husband and almost 4 year old all the way down to the meadow and watch as my son rejoiced in the magic that is snow. Instead, I settled for the pictures and videos.

In Joshua Tree, I fantasized about what it would have been like to show my boys how adventurous and “cool” I could be, encouraging them to climb up high with me or taking their hands and leading them through what they called, “the canyon.” Instead, I couldn’t even get over the required terrain to watch them make it through the canyon. But surprisingly, I didn’t feel sad. (Keep in mind, I’m not one to shy away from negative emotions.) Instead, I was able to take in the magnificence and utter awe of the beauty around me. And not just of the physical landscape, but of the beauty of being together with such loving friends and happy kids. I almost couldn’t believe it- how far I’d come emotionally. This was probably the first time in 9 years that I felt limited physically but not emotionally. I never thought I would get there, but I did.

More of it continued on our next trip. My older son loves to ski so we make a point of going every year. For the last two years, (his first two years), I got up the courage to work with the adaptive ski program to do a couple hours on stand-up skis. I knew those days were behind me now. So I got myself all psyched up to try sit-down skiing. So much so that I didn’t even get that upset when we came home from renting skis for everyone but me. I felt excited for this new challenge. I decided I was going to make it my mission to eventually master sit- down skiing. A few days before we left I called to set up a lesson. It turns out the adaptive ski program was closed for volunteer training for the entire time we were there. I was disappointed, but comforted myself with the fact that my younger son still wasn’t out there skiing so I would get to spend quality time with him instead. But all the while I wondered what it would be like to be skiing with my older son. Who would I be? Would I try to show off and impress him, maybe lead him through a few trees for kicks? Would we eat frozen Snickers bars on the chair lift like I used to do as a kid? It’s the same feeling I get when he’s jumping rope. He shows me his “tricks” and I’m desperate to show him mine. How I used to jump rope boxer style, quickly shifting my weight from side to side. How I used to double jump or do criss cross. But I can’t. I don’t get resentful or mad about it anymore. I simply enter into a state of wonder. Wondering what kind of mom I’d be without this disease.

So, what’s my point in all of this? Well, it turns out I wasn’t as okay as I thought I was. These last few days of being back to work and into reality have been hard. Yes, there’s the normal PVSD (post-vacation stress disorder), but there’s also the fact that the tough moments aren’t balanced out by the novelty and fulfillment of being in a different scene or on vacation. The scale gets tipped. The little things start to add up and weigh down one end. It’s mostly when I’m alone.  Like when I can no longer pull the parking ticket out of the machine at the the gym or mall parking lot with my left hand (or now even my right hand) and instead have to unbuckle my seat belt to reach over and use both. Or the fact that my toes are starting to become so weak that throughout the night one often gets “stuck” on top of another and the only way I can get them unstuck is to manually reach down and do it. Hard to do when lying down. Or, when I’m alone at home and I can’t pull open the door to the dryer because my fingers aren’t strong enough in the curled position to be very useful.

Sometimes I feel like living with HIBM is like living on a train. When I’m on vacation, I take the train with my family and friends and together we sit and look out at the beautiful views. And then, when we see somewhere we like, we stop. And everyone excitedly gets off. And I take such pleasure in watching everyone. But sometimes I wish I weren’t stuck in my seat watching the scene from the window. Sometimes I’d just like to step off and join in too. In so many ways I feel so lucky to be on this ride. And in so many other ways, I wish I could take a detour. Even if just for a day.

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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