The first thing I feel every morning is somebody else’s hands on my body.

I tell them the plan. They tell me what they’ve got. Everything after that is negotiation.

Most people picture a clean transaction. I have cerebral palsy. I hire help. They show up, do the job, and I stay in charge. The disability rights crowd even has nice language for it. I’m the employer. I direct the work.

In reality, my entire day runs on somebody else’s schedule. When they walk through the door decides when I get out of bed. What they’re comfortable doing decides what I actually get to do. I might get one morning a week where things go exactly the way I want. The other six, I’m working around them.

Everybody assumes that because I’m paying them, they do things my way. They don’t. When you need this much help, you learn real quick which battles actually matter and which ones you let go. Fighting every single thing just makes them quit.

I’ve been trying to find consistent help for six months now. The applications are long, the pay isn’t great, and nobody wants to work from 7 AM to 11:30 at night. If I land somebody reliable, it’ll be by the grace of God. There’s no other explanation that makes sense.

I’ve been in this body for 47 years. I know it better than any aide ever will. But knowing exactly what I want doesn’t mean I get it. I get whoever showed up that day.

These aren’t extras. Deodorant after a shower. Clean sheets. Making sure the back door is locked. That’s the job. I shouldn’t have to say any of it more than once, and after I say it, I shouldn’t have to think about it again.

Every attendant skimps on something different. One is great about the deodorant, but loose on the sheets. Another locks the door without being asked, but does everything else their own way. They just don’t live here, so they don’t see what I see every single day.

And yeah, almost every single one has either climbed into my chair when I’m not in it or reached over and grabbed the joystick to park me where they think I need to be. My chair. My joystick. Because from where they’re standing it’s just easier.

When you need this much help, other people’s instincts are always in the room with you.

I’ve learned to let most of it go. The joystick. The sheets. The back door. You pick your battles when the alternative is starting over. And honestly? It could be worse. I haven’t hired anybody yet who wants to dress me like Steve Urkel. I’m pretty sure I’d look terrible in suspenders.