I haven't written in a long time, which isn't to say I haven't been thinking about it. I have been thinking about a lot of things as I slowly and desperately try not to slip too far down this mountain I've been climbing.
Having FSHD is such a long and twisted journey. In fact I've come back to this draft in 2022, realizing I started it in 2018.
Time passed quickly during covid and it's a good reminder of how quickly you can go from stable to not. It always feels like your muscles are progressing faster than you think. If someone had asked about how long my fast progression has been, I would have said 2 years. But, clearly it's been more than that.
One FSHD researcher describes the progression of FSHD like a rope that's being cut thread by thread. The thing people don't realize, is that with every thread that's left, you consider yourself still mobile. It's that last thread. When that last thread gets cut, that's when you feel like it happens fast. You don't feel all the other threads that are being cut. It is the difference between being able to do something and not. No one likes, 'not'.
In the last five years, I've gone from walking with a walker when needed, to being in a wheelchair part-time and not being able to walk without assistance.
It might have taken 50 years to get here, but it doesn't feel like it.
I remember the look my friend Ann gave me when we talked about FSHD. When I met her, she was already late in her progression and in a wheelchair. This of course does not in any way describe her spirit which was very robust. I was at the beginning of my diagnosis and journey into FSHD.
Like many people who are diagnosed in their twenties and have mild symptoms, we think we can beat it. We think we are going to be the ones with the mild progression who can fight it through exercise, supplements, naturopathic treatments or anything new that shows promise. Ann looked at me in a way that was knowing, but she wouldn't let on. No one wants to break anyone's spirit or bruise anyone's hope in any way. But she knew how the journey would go, because she had already been there.
I'm sure she would be very optimistic by the research and investment that has been made toward a cure for FSHD. We have come such a long way from where we were 30 years ago when I started my journey.
Until that time comes, I will continue with whatever comes up that I am still able to do (like yoga, meditation and getting out as much as possible) while having the humility that is on me now. This part of the journey is all about keeping the spirit whole. It is sometimes the most difficult part when having a progressive degenerative disease involves being in a perpetual state of mourning.
It's a lesson in managing expectations and the ability to adapt. It's a lesson in learning how much is out of your control. My new mantra is 'live.learn.accept.adapt.repeat.' I'm still in the game, even if it's on the sidelines. I'm still moving, even though it's slower. I'm still happy, even though I am sad sometimes. I'm still looking for new passions, even though they are in unexpected places.
Inhale courage and exhale fear. Remember,
'live.learn.accept.adapt.repeat.'
Until next time... and there will be a next time.
