No.

It’s been a rough week and a half.

I’ve fallen twice and had to call 911. The first time was at home. I was trying to flip up my cane that had fallen, and I got tripped up trying to step over it. Scraped up my arm on the way down. Goose egg on my head. And the medics killed my knee because they wouldn’t listen to me when trying to get me up. My knee still hurts.

The second time I was in my hotel room at Disney. I wasn’t hurt, but it was utterly humiliating for reasons I’d rather not disclose. The medics were 100% better and got me up without incident. I went to the ER just to get checked out, and ultimately decided to just come home.

When people describe the five stages of grief, please know they are very real and very nonlinear. I have been in the denial stage for a long time. I’m now reaching the anger and acceptance stages simultaneously.

What am I grieving, you ask? My independence.

A while back, the rage was aligning your values and your work and life. At the top of my values list was always my independence. I hate having to rely on others for anything. This should surprise absolutely no one who has known me for more than a day.

And yet, here I am. This damn dermatomyositis is robbing me of that independence. I may never live on my own again. Adaptations could probably be made so that I could do more, and once I have my power wheelchair, I may be able to drive myself places again. But I’ll still require significant help, and I’m not sure it’s safe for me to be on my own. Even if I got LifeAlert 🙄

I don’t think I’ll ever work full time again, and certainly not in an employee capacity. Between my physical limitations and my extraordinary lack of stamina, it’s just not feasible.

So now what? I have this lease until the end of May. I have Chuck. I can’t use stairs. I am literally a burden. What do I do?

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