I wrote the first two paragraphs of this post a few days ago when I was deep in it. Then I had to stop, because it felt like too much. Then, a few days later, I came back to it…

I am overwhelmed. There is so much going on in my head and in my body. Too much. Usually this is when I write. But I am caught between the compulsion to share everything and a deep desire to not utter a single word. I do not want to be here. I have always dreaded being here. I am here.

I am terrified.  I have become so adept at “holding both” over these past 16 years. As my body has weakened, I have strengthened my ability to make room for all the opposing feelings simultaneously-to feel blessed and cursed, at peace and terrified, lucky and unlucky. But it’s getting harder to maintain my balance in the combined dream and nightmare that is my life. I’m worried that I can’t continue to prevent this disease from contaminating all the true joy and fulfillment my life offers me. 

Lately I have started to struggle with sleep. One of the dreaded outcomes of this disease, aside from potentially/eventually not being able to feed or dress myself (I still can’t believe those words apply to my reality), is not being able to move around while sleeping and needing to be “rotated” throughout the night. Though I am not there yet, it has crept into my field of view and I am horrified.

I sleep in the same position every night- curled up on my right side, facing my husband, with a pillow between my legs for support. I’ve done everything to maximize my comfort- from our Tempur-Pedic pillows and mattress to our just right lightweight comforter. (It’s never lost on me how lucky I am to have the resources to manage my disability in the ways that I do.) 

Until now, I’ve surprisingly managed to sleep quite well. But early last week, I noticed some redness and tenderness on my right ankle. I figured I had bumped it. Or my new sneakers were agitating it. But then I started to wonder… Although I’m still physically capable of moving around in bed, I literally fall asleep and wake up in the exact same position, not having moved all night. Surely that can’t be good. What if…And then I shut it down.

I kept it to myself. I didn’t even tell my husband. How could I tell him if I couldn’t even tell myself? I eventually mustered up the courage to Google it: “pressure sore.” The mere thought of it made me cringe. It catapulted me back to rounding on inpatient internal medicine wards in medical school and residency- depressing memories of frail, elderly, bed-bound patients with bedsores or pressure ulcers. But I am young and healthy and still relatively mobile. It can’t be.

And then I mustered up a bit more courage and posted on the HIBM/GNE Myopathy Facebook group. Fellow patients generously offered their accounts of having similar sore spots, needing to use yoga straps to pull up their legs, attaching railings to the sides of their beds to help shift around, and relying on partners to move them.

And then, finally, after all the shock, denial, panic, intellectualization and data gathering, l surrendered to the deep emotional pain that comes with laying down a new tombstone in the cemetery of this disease: “Being able to sleep in peace without worry, fear, physical discomfort or assistance.” And I cried. A lot. On and off for days.

The steady investment in mindfulness, self compassion and grieving that is required for me to live an emotionally healthy life is exhausting. I honestly thought that by now I’d be done having to work so hard; that somehow I’d be spared from experiencing these dreaded next phases and accompanying feelings. I imagined proudly telling the story of how the non-profit foundation that my family started funded the research that resulted in a treatment to stop the progression of my disease before it got really bad. As in, before it got this bad.

Instead, I am forced to confront the uncomfortable truth that it only gets exponentially worse from here. 

Life is hard. There’s really no way around it. It is beautiful and strange and wondrous. And also, hard. (It doesn’t help that it feels like we are witnessing the demise of civilization.) One thing I have been reminded of over and over again with this disease is that it is resistance to pain that causes the most suffering.

So this is how I surrender- by processing, writing and sharing my feelings, by exposing my vulnerabilities, and by reminding myself that emotional intimacy has always been the greatest antidote to my pain…