By Jocelyn Duff

IMG_2233My husband will tell you that it is hard to be me. I tend to live life with a slow, constant trickle of worry that ebbs and flows depending on the health and happiness of my children and my patients. Going on vacation can sometimes be a challenge. Lying on a secluded beach, surrounded by warm sand and water certainly sounds dreamy, I know, but it can be hard to flip the switch in my brain to relaxation mode.

Our most recent trip to Martha’s Vineyard offered up a bit of a different kind of stress. Our quest for an accelerated cure for CMT4J feels like a fast-moving train now. It is difficult to stop talking or even thinking about all of it. Our endeavor to push science and time also means that the daily “push” to get there is a relentless to-do list in my head.

Before leaving for the Vineyard I had scheduled a call with someone who will likely be one of our most important contributing scientists. The call was supposed to coincide with a narrow window of time before going on to the ferry. Unfortunately, we were running a few minutes late, so I was forced to make the call while driving into the lot, surrounded by very loud construction machinery, while my kids suffered silently in the back seat with no AC, windows closed and lips zipped. Thankfully, it was a brief call that culminated in this incredibly smart and kind scientist signing on to every early detail of our upcoming meeting.

Just as soon as I had hung up from that call, my phone rang again, this time it was a clinician at Johns Hopkins who was calling to let me know that he was rearranging his schedule in order to be a part of our investigatory path towards a cure for CMT4J. Moments like these leave me pinching myself in disbelief that this is all truly happening. It is.

Our vacation flew by. It was sprinkled with other phone calls and email chains full of necessary details to be worked out in order for our September meeting to happen. But, we also had incredible moments spent on our favorite, secret beaches surrounded by warm, blue waters, dunes and grasses. One evening we had the entire beach to ourselves, finally climbing into kayaks for a tired, sunset paddle home. It was blissful. And despite all of the interruptions, it was probably the most stress-free vacation I have had in some time. The faster this train moves, as the support and interest from researchers and donors grows, as we connect with more and more families, the more I am convinced that we are going to get to a cure. And the more I notice that the constant trickle of worry is slowing.

Hope is the thing with feathers
That perches in the Soul,
And sings the tune without the words
And never stops at all.
–Emily Dickinson