RIP to the Old Me
I feel like one of the strangest parts of having a progressive disease is constantly adjusting to my “new normal” over and over. Years ago, I remember having to run extra laps because I was late to basketball practice. I remember walking the mall for hours with my friends and summer sports camps. I remember 3-mile morning dog walks and going skiing with my family. And I remember somewhere in the middle of all this, life slowly changing. The thought of me on skis makes me laugh now. 3 miles would put me to sleep for a week. And I’ll never run another lap again.
As my LGMD has progressed, I’ve lost a lot of things I love. And as it continues to progress, I’ll continue to lose. So it’s fair to say that I’m in a constant state of low-grade grief. Some moments of grief are little, and some are big. It can be as small as an invite to a spin class that I have to turn down. A noticeable ache when I go up a few stairs. It can be a look of empathy from my mom at the wrong time, or canceling plans because I’m in a flare-up. Those things feel like small twists of the knife. Small reminders that I’m not normal. Or it can be big. It can be the realization that I’ll never live in a two-story home again, and when we have babies, I’m going to have to lean heavily on my partner. It can be the financial worries that this chronic illness brings with it. Or that my muscles are always actively atrophying.
It’s ok to notice and grieve this. It’s ok to grieve it over and over and over. Grief isn’t just a normal step in this journey, it’s normal in every step of it. You have the right to grieve what’s being taken from you. Missing what you lost ≠ being ungrateful for what you have.
I’ve started a spotlights section on this blog as a way to build community and honor some stellar humans who are putting up one hell of a fight. It’s not a measuring stick to compare who “has it worse”, but an extended hand to hold as you walk through this — knowing so many are walking next to you. And I can assure you, we’ve all grieved.
