Pondering the depth of disability

When I was little, my mother used to receive a lot of bad news from doctors. She was told her baby wouldn’t survive. Wouldn’t walk. Wouldn’t talk. Would have cognitive impairments. Would never go to school.

It’s how I got my name— Angel— the baby that wasn’t going to survive. Who stayed in the hospital for months.

So my mom stopped taking me to doctors. The only time I visited a doctor was for school mandated physicals and vaccines.

It has taken me decades to find doctors who listen and care, and now I have a certain respect and not pity… not empathy… but maybe compassion for doctors because we expect them to know so much.

We hope they have answers and cures. And they want to provide answers and cures.

But people are complex machines.

And I’m realizing — my doctors don’t necessarily know much about cerebral palsy. It’s such a generic blanket term. In addition, I have mild cerebral palsy, which means you can tell there is something wrong with my legs but it’s hard to say what.

One friend said when he met me he thought I had a hip issue. A work colleague once asked if my knees were broken as a child.

So last week I received a mysterious phone call from my doctor’s office that was actually from my doctor. I called back, but no one knew why he called. I said I planned on emailing my questions to the office Monday. Which I did. And set up physical therapy. For today. And scheduled a follow up visit. Also today.

But Tuesday night, at 5:20 pm, he called again. And he said (amid other explanations that I already received from my chiropractor) that if I were 70 or 80 the condition of my lower back would be considered normal, but at my age it was definitely cause for concern.

Great.

And he said we may need to look into accommodations or restrictions at work.

Great.

My job isn’t perfect but I like it and I don’t want to lose it. It gives me time to think and focus on my own ideas and I like that.

This caused a lot of fear in my heart, even in the morning while sharing croissants from Lidl with the teenager.

I worked a full eight hours Monday and Tuesday, something we haven’t been doing often with supply chain issues.

Monday I QCed 105 fixes. Tuesday 115. Down from my average 126. And I hurt. Which sucks. So I pledged I would talk to my supervisor last night, to learn what I need to do when I go to the doctor.

Frustratingly, we use an app to organize these things and it’s not been very user-friendly for me. But let’s not dwell on what hasn’t happened yet.

I made the choice to work at a new table last night. On the left instead of the right, wondering if the shift in my pain stems from “leaning” to the right to send boxes down the line. My colleague who has had back surgery recently wonders if it’s something to do with dominant side.

My peers see me struggle (while the person at the station behind me QCed 170 fixes last night.) Even though I have no formal accommodations or restrictions, they bring me work that requires less twisting and bending.

First they parked a whole rack of completed refixes next to me, and when I finished those (with the help of my colleague who had back surgery), one of my peers boxed the bottom two fixes in each cart when he could.

Things little changes help. And they make me feel like part of the team and less broken. With the upcoming change to day shift, I’m worried this camaraderie will be lost.

Pain is exhausting.

Fear is debilitating.

The efforts I (and others) made last night did reduce my pain and it stayed in the middle of my back and didn’t spread or intensify. So maybe fear can become hope.

Reactions are the hardest. I still struggle to navigate people’s reactions to me. Even when they are friends or family or someone I work with everyday. Some people worry. Some people ignore the disabled part of you. Some people crack painful jokes.

I get that people don’t always know what to do. I get that it’s hard. But I also know how it feels to be trapped in your own head with an injury or a disability.

I’m not looking for a caregiver.

But emotional support would be nice.

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