LIVING WITH HIBM

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

Monday, September 18, 2017

What’s the plan?

This weekend we had the honor and pleasure of attending my husband’s cousin Julie’s wedding in Washington D.C. Julie is one of those shiny bright sparks in the world. She is the definition of exuberance. (Don’t take my word for it, just ask one of her eight best friends/ bridesmaids.)

Not only were we excited to celebrate her marriage to the equally fabulous Justin, but we were thrilled to take the boys to D.C. for the first time, even if just for a few days.  We were going to take in as many sites as possible and our dear friends were coming in from New York to spend a day with us.

I felt confident the trip would be a success. I had traveled with my cool new TravelScoot once before and it had been a game changer. I was ready for the adventure and in a great mood when we left. So much so that when I struggled for the first time to turn on the airplane overhead fan because of my worsening upper body weakness, I didn’t let it get me down. I registered it but chose not to react emotionally to it and I chose not to think about what it meant for the future. I am always assessing whether it’s worth expending emotional energy on a loss versus reserving it for later. I let it go.

The true joy and happiness I derived from being in D.C with my family, extended family and good friends raised my threshold for tolerating most of the frustrating and disappointing moments I encountered while there.

There was the first restaurant we stopped into for breakfast on day one that didn’t seem very interested in finding a space to store my scooter. (We left, of course.) There was the second breakfast place that was happy to accommodate my scooter, but though the bakery was downstairs, the actual restaurant was upstairs. (I climbed the stairs and my husband carried the scooter up.) Then there was the shocking discovery that the bus tour we had planned to take, the double-decker Hop On Hop Off bus, wouldn’t let me/wasn’t equipped to bring the scooter aboard. Even if we broke it down and stored it in the carrying bag, they wouldn’t allow it. They said that though they did have some accessible buses, they ran much less frequently. (This, in our nation’s capital, mind you.) No matter, we went with the Old Town Trolley and had ourselves a wonderful time.

We stayed at the Four Seasons Hotel in Georgetown where the wedding was being held, courtesy of the bride’s incredibly generous parents. (Thank you again, Aunt Max and Uncle Alex.) Though I had lived in D.C. for a summer after college, I had never spent much time in Georgetown. For those who don’t know, the sidewalks consist mostly of cobblestones and bricks. Uneven walking surfaces are a foot drop patient’s worst nightmare, with or without leg braces. When I did take a break from scooting to walk (one day I’ll write about how physically uncomfortable it feels to move around while sitting all day), I had to hold on to my husband for dear life at all times. Suboptimal for me and for him, especially when he needed to tend to one of our boys. But again, the charm of the city, the indulgent treat of the fancy hotel, and the positive vibes of the weekend outweighed it all.

Even when at the end of the beautiful wedding ceremony, I stood up and tried to stabilize myself on a chair before pivoting towards the door and subsequently took down a handful of chairs with me as I fell, only to be caught by my husband, I still didn’t let it get me down. I shifted right into easing-worry-and-discomfort mode for the concerned guests who were gathered around me. I cracked a joke about feeling relieved I didn’t knock over one of the aisle candles and light the room on fire. (I internally felt extremely grateful that I didn’t have a mishap during the actual ceremony.)

The cocktail hour came and went. I’m used to not being able to serve myself food at a buffet anymore. (If you’re holding a cane in one hand and a plate in the other hand, all the while trying to maintain balance, there’s no third hand to serve yourself food.) But that’s where the willingness to be needy and ask for help, sometimes from total strangers, really comes in handy.

Finally, we entered the ballroom for the reception. The band was on fire. Most everyone went right to the dance floor. I watched from my seat as the bride and groom were lifted up in their chairs and guests danced around them. I felt pure joy seeing their love playout on the dance floor. I smiled thinking about my own wedding more than 14 years ago as I watched the bride rock out with her friends and family. I remembered how blissfully happy and carefree I felt getting down on the dance floor at my own wedding, surrounded by my most favorite people in the world. It was a magical feeling. Back then, I had no idea I had this disease.

I considered getting up to try to join in on the fun, but in my sandals, my balance is worse than usual and with such a packed dance floor, I felt almost certain I might get knocked down. I didn’t need to make another spectacle of myself. Lucky for me, the people (I won’t name names) at my table weren’t really the type to jump up onto the dance floor. But as I looked around, most tables were empty. And then, little by little, my own table cleared out to join in.  Of course, not completely. My husband, who was beyond content to stay seated, was sitting next to me and my father-in-law was a few seats away. But that was it. Just the three of us.

And just like that, without warning, I started to cry. My joy suddenly morphed into pain. I felt ashamed and embarrassed. I told myself to pull it together. This was such a joyous occasion. I bent down to pick up a napkin and stayed there to wipe my tears. I was desperate and determined to not let anyone see me. I was unravelling at such an inopportune time.  I tried to talk myself down. I told myself to get over it. I told myself I had a good 30 years of it, some people don’t get any of it. I tried to use the power of gratitude to overcome the sadness. It didn’t work. My husband looked at me for a second too long and I broke again. He pulled me in.  I tried to quickly get it all out onto his shoulder. I tried to do that thing where I plaster a fake smile across my face in the hopes that my tears might get  confused and dry up. But they didn’t buy it. I found myself wishing my pre-disease baseline was of a totally different temperament. Maybe then I wouldn’t envy the revelers on the dance floor, so free in their bodies. I fantasized how much easier this aspect of my life would be with this disease if I didn’t have to say so many good-byes. But of course, I know that’s foolish because then I wouldn’t have accumulated all the joy and wonderful memories that have made me who I am.

Everything we love can be taken from us. That’s simply a fact. It’s the risk we consent to when we truly let go and give in to the joy.

In moments of pain, I often find myself making futile attempts to come up with a “plan.” What’s my plan from here on out? How will I keep this up?  If I had a plan, I think to myself, maybe it would feel easier. I start wondering, am I going to keep going to parties and weddings and bar-mitzvahs? Am I slowly going to retreat? What do other patients do? Am I going to limit my exposure to the emotional discomfort? Is that selfish?  A few years ago, my less progressed self would have adamantly responded, hell no.  But now, as my limitations become more pronounced, it feels harder to just say yes. What’s the right answer? As someone who likes to pride herself on not living life in avoidance of emotional discomfort, it feels like a betrayal. But how much can I take? Why is it so hard to say good-bye to this particular part of my identity? I’ve already somewhat successfully said goodbye to so much else. How will I ever stop missing the old me?

I wish I could tell you that I came up with a solid plan for how to move forward with this disease. But of course, I didn’t. What I can tell you is that I stayed as long as I could at the reception, but eventually gave in to my husband’s blessing that it was okay to go back upstairs before they cut the cake. As per my usual, I continued to cry all the way up to my room and then in my bed while everyone else was asleep.

But here’s the thing- the next morning, I woke up after little sleep and though my eyes were puffy, the rest of me was at peace. There were no more tears. The waves that had been crashing the night before had receded and settled down. We went down to the farewell brunch and I was fully present and engaged.  I wasn’t bitter or angry. I enjoyed mingling with other guests, debriefing about the wedding and watching how adorably my two boys were eating together at their own little table. And I especially loved hearing about how at the end of the night, the bride and groom rode the elevator with Stevie Wonder who was staying at our hotel. He even sang to them. True story.

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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