Today is international Rare Disease Day. And on this rare, very rainy Friday in Los Angeles, what was most on my mind all day was the fact that before HIBM, I don’t think I ever once thought to consider the impact the weather can have on the lives of people with disabilities. I don’t judge myself for it. It’s just one of those things that would likely never enter into one’s mind unless or until one is confronted by it first-hand. I am lucky to live in Los Angeles, where the elements almost never work against me. And so it is probably because of the infrequency of such weather that it hits me as hard as it does and did today.

As I woke up to the sound of pounding rain on the roof, one of my first thoughts was what shoes I would wear as I trekked around town, getting everything done that I needed to today.  I wondered if I would be more excited for the rain if it meant I got to pull out a pair of stylish, barely used rain boots from my closet. Or, any rain boots for that matter. (I have yet to find a pair of rain boots with a zipper down the back that would allow for me to insert my leg braces). When I arrived at my first destination and opened the car door, I took out my new umbrella in one hand while still sitting in the driver’s seat (and while also holding my phone, talking to my sister in the other). I was running  late for an appointment.The rain was coming down hard. In my old life, I would just press the little button on the handle to allow for the umbrella to open and be ready for use. But in my current life, my right thumb doesn’t have the strength to push it down all the way and so as I’m getting soaked in the rain with my car door open, I had to abruptly hang up the phone, put everything else down and then use both thumbs to open it. This may sound like a minor inconvenience to some, but in that moment I am made acutely aware that even the simplest of physical tasks are challenging for me. I am frustrated, angry and sad that I have to tolerate this disruption, both on a practical and an emotional level.

Of course, then there’s the business of not being able to jump over puddles or step up onto a curb easily to avoid the small river that forms between the street and the side walk…

But I will stop there.  This is just a few minutes of the life of someone with a disability. And that’s someone who is still relatively able-bodied.  And who has so much farther to go. I am still at the beginning. This is nothing relative to what may be coming. There are HIBM patients using canes, walkers and wheelchairs, trying to navigate their way through slippery sidewalks or worse, being forced to stay home and not get to participate in their lives the way they wish they could. There are patients waiting out in the rain for public transportation because they no longer have strength in the muscles needed to drive a car themselves. The ones who have become even too weak use hand controls so as to preserve some independence.

So, where does that leave us? Where does that leave me?

I recently read an article in the New York times titled, “How Long Have I Got Left?” written by Paul Kalanithi, MD, one of the chief neurosurgical residents at Stanford. He shares his experience of being  recently diagnosed with metastatic lung cancer. He describes what it’s like to have to cope with confronting his own, very real mortality on a daily basis at age 36. In doing so, he refers to 7 words written by the playwright Samuel Beckett that have stayed with him since he had read them years ago as an undergrad: “I can’t go on. I’ll go on.”

And much in the way that Paul Kalanithi was profoundly impacted by this simple phrase, I too have been holding it close to me. It has been incorporated into my armamentarium of coping tools. In fact, it’s at the top of the list. Somehow, some way, we do it. We move forward. We endure the loss.  We find the blessings and joy in our every day lives to balance the depth of the pain.  We think we won’t be able to handle the decades that are presumably ahead of us, but somehow the years pass and we’re still doing it. Those of us with rare diseases don’t have the luxury of knowing that there are billion-dollar pharmaceutical companies lining up to cure us the way people with lifestyle diseases, such as high cholesterol and hypertension do. We don’t have the benefit of research institutes across the nation focused on curing our disease the way other devastating but at least much more common diseases do. We have to pull from all of the resources that we have within us. We have to cultivate our resilience in a way we never imagined we’d have to. We have to raise awareness. And we can never give up on believing that now matter how ultra-rare our disease is,  there will always be hope. No disease can take that away from us.

I can’t go on. I go on.