Long-Term-Care

My family built a vocabulary for what it’s actually like to live in my body. Systems have their own vocabulary, and none of it has room for mucus-y days, whooshy nights, or the dog who saw the version of me that was actually there.

Multiple disabilities don’t add up to twice the difficulty. They compound. And the hidden cost of producing “acceptable” output from a system with no reserve capacity is one that no assessment, no checklist, and no institution has ever known how to count.

A desktop computer isn’t a device for me. It’s communication, regulation, learning, advocacy, and independence. The nursing home almost didn’t let me bring it because it didn’t fit their idea of what a patient needs.

Eleven years ago, a tiny stray puppy walked into the room where I was curled up in pain and decided I was his person. Now I’m in a nursing home and he’s with my mom, and the distance between us is the shape of everything disability has cost me.

I’m grieving the realization that the independent future people imagined for me wasn’t based on my actual support needs. It was based on what they could see, what they wanted to believe, and what systems are willing to recognize.

I entered nursing home care because I needed to get out of an unsafe situation quickly. But the crisis also forced me to face a bigger truth: I may need full-time long-term care, even if a nursing home isn’t the right setting forever.