Finally, after waiting since Helene to get back into PT, today was my wheelchair evaluation. And I think I need to start before today, just slightly, because I feel like I’ve heard others tell this story, and now somehow I’m telling it? It’s a story I’ve seen repeated so many times in the disabled community, and I want to spell it out plainly.
This has been a very long road.
My first mobility aid was a cane. I got it while I was still with my ex husband, younger, early 20s, and had just given birth and stopped nursing. And honestly, that cane came with a fight. I wasn’t supposed to use it in public. I was “too young.” I didn’t “look like” someone who needed one. Doctor’s can be wrong. It’s embarrassing to be seen with. Don’t believe everything you read on the internet. The list goes on and on, moving goalposts.
After that, my first rollator came as a Christmas gift from my mom in 2021. I’m pretty sure it was 2021 because of the timeline with Elena, though it could’ve been Christmas 2020. With the same goal posts.
The hardest part about needing mobility aids when you are young is that everyone seems to have a different idea of what “disabled enough” looks like, and somehow you are always being measured against a standard nobody can actually explain.
Fast forward to semi present day, living with Catherine, my partner, and my first insurance covered transfer wheelchair, right before Hurricane Helene. Basic silver transfer chair. 5 dollar copay. It wasn’t fancy. It wasn’t custom. It wasn’t anything special on paper.
But it was mine.
That chair survived the hurricane, the displacement, the hotel moves, and all the chaos that came with it. It carried me through a chapter of my life that I never expected to live, until the wheel finally broke at the hotel in Tennessee.
Still displaced, we needed something local and we needed it quickly. We found Max Medicine Mart, I believe, and they had a hurricane relief program. We traded them the one with the broken wheel for a new donated wheelchair. A plus size, sturdier chair. This is my chair. The one I’m sitting in as I type this draft. Ole reliable. She’s amazing, she’s just ready to retire.
And today was the first return to PT and wheelchair evaluation since Helene, to address exactly that. A new replacement chair that fits where I am now.
Cat and I worked together to set this appointment up. She goes with me to all my appointments, and we both remembered how much we liked this place from her previous experiences there.
I had only been there once. She had been there twice. They have been kind to us every time. So it was nice going somewhere trusted.
First, the waiting room had its own little moment.
There was this sweet older man in an orange shirt sitting there. When I wheeled by, he looked at me and said:
“How you doing, sir?”
And internally? Immediate gender euphoria.
Out loud I just said, “Doing good, you?”
This sweet old man kept talking with his caretaker about everything and nothing. One conversation I overheard was about fly fishing. The man asked something like, “Do fish fly?”
And it was just the cutest little interaction.
Cat told me later that she had seen him there before and that he practically lived there. She had even pushed him around once. It was just this tiny, random, human moment before the appointment started.
Then the evaluation began. I worked with a really kind set of physicians. One was the woman who did most of my evaluation. The other was the guy who helped with the wheelchair side of things. I felt comfortable. I didn’t feel embarrassed or like I was in the wrong place.
The first question was basically:
“What are we here for? What do you want? What are your goals?”
“I want to strengthen what I have, protect what I have left, and improve my quality of life.”
Mobility, Function, Independence, but I also wanted to address my broken arm’s range of motion and the fact that my current wheelchair is falling apart. And they listened.
That sounds simple, but I’m telling you it hasn’t always been simple. And THAT is why I’m putting so much effort and detail into writing something so small into existence largely.
Back in the PT area, there were a couple moments where my autistic little brain went, “Ah yes, an uncomfortable social situation detected,” like seeing myself in the mirror Hunchback Penguin Waddling around the room, but overall the experience was genuinely good. I had shyness, not discomfort.
As we talked, they started getting more and more into the medical language. And I recognized that shift. I don’t walk into appointments trying to prove I know things. I don’t want to be the person who says, “Well actually, I did nursing school.” So I actually usually try to just wait until they talk to me and talk however they do.
After all, they are professionals. I didn’t finish. But I think they could tell I understood more than the average patient. There’s this weird thing that happens in medical spaces where there’s almost two conversations happening at once. The one everyone is saying out loud, and the one happening underneath it. And suddenly I was in that second conversation too.
And I was like: “Oh. Hi. Hello. I know this language.”
Then came the physical evaluation. She checked my vitals, gave me a cane because I had left mine in the car like a complete genius, and had me walk over to the table.
The tests were familiar. Push against my hand. Pull. Lift your leg. Move your wrist. Check range of motion. All the normal PT things. And she was wonderful about it. She told me not to push past my limits. To challenge myself, but not force myself into a flare.
She asked me to stand while she checked my vitals. The finger monitor. The blood pressure cuff. And I looked at her and said:
“Poor man’s tilt table?”
She gave me this cheeky little grin. She knew. She didn’t say anything. But she knew.
Later, when we tested my legs while I was laying down, she did the same thing. She checked me in different positions.
Next, the guy pushed my wheelchair behind me in case I needed it. Cat supported me the way she does at home, my hand on the cane and my other hand on her elbow. And the lady had me just sort of walk laps around the room.
And we walked. Until my body said:
“Nope.”
And the funniest part? It happened so fast. I made it like ¼ of that lap around a very tiny room LOL.
I said, “Oh, yep, there it is.” mostly under my breath.
At almost the exact same moment, Cat said: “Okay, that’s enough, you.” and gently tugged me toward the, now approaching, chair.
And the girl behind me immediately asked: “Is it time to sit?”
The guy was already moving the chair towards me, now it’s basically at me, and Cat ushers me right into it.
No debate. No argument. No questioning whether I was really struggling. I had a symptom. Everyone responded. The lady actually ran to get the equipment and immediately checked my vitals. After that, we started talking about the actual wheelchair. It was such a simple thing, and such a quick and smooth transition, and I think that’s why it hit me so hard. Like woah.
So now words are flying around the room, some I’ve never heard of, some I have a basic knowledge of. Manual. Power. Future options. Insurance. Different models. They talked about K4, K5, different frames, different options. They even disagreed with each other for a minute, which was honestly kind of adorable. It was like watching siblings argue:
“No, this one.”
“No, this one.”
Eventually we landed on what seemed like the best option. The frame choice came down to customization versus foot positioning.One option was lighter and more adjustable, but my feet would sit farther forward.
The other was a little sturdier and allowed my feet to come back underneath me more. And because I’m used to my hammock style and keeping my feet back, I chose the second option.
Everyone agreed.
Then came the question I absolutely was not prepared for. The guy looked at me and said:
“Now, this is the hardest choice you’re going to make today.”
My brain immediately went:
“Oh no.”
I expected insurance problems. Complications. Something terrifying.
“What color do you want?”
I blinked.
“What?”
He handed me the tablet.
Apparently, I got to pick. Like I was choosing a car, or a hair color. I had to do a mental double take before the first click.
I’m looking at this tablet like it could spontaneously combust any second and I hesitantly tap, and it felt like I wasn’t supposed to, but I did. And the colors popped up, cyan teal. The same dark blue green color I used to have my hair. The same color I keep building everything with in Subnautica and Minecraft.
Of course it was an option. Of course. So the frame is going to be that cyan teal.And the wheels? I debated black. But there was also this gorgeous dark purple.
Cat looked at me. “Come on. You know you want the purple.”
The guy was grinning.
Fine.
Fine.
When I saw the picture of the chair, my first thoughts were:
“That’s a social media wheelchair.” “That’s a famous person’s wheelchair.” “That’s bougie.” “That’s Gucci.” “That’s a wheelchair?” “Is that really mine?”
Because I genuinely do not know how to process that.
The last wheelchair I got was basically: “Do you want it fat or small?” The one before that was a $5 copay. Don't get me wrong, I was overjoyed both times. Which is why this was so mind blowing. I expected more of THAT. But the reality is, this is healthcare. This is what it is supposed to look like. This is not too much. This is a chair built for my body, and I am allowed to have a say in it. I needed this. I fought for this. I just did not expect to be allowed to participate in this.
While I was talking with the therapist about next steps, and the actual PT part of the PT, the wheelchair guy was measuring me.
My legs. My hips. My chest. Everything. And he apologized for bothering me.
I told him:
“Nah, I’m just pretending I’m a statue. I’m treating it like a dress fitting.”
And he laughed. But honestly? Thinking back?
That’s what it felt like. I femme presented until after I had Elena. I did the prom dresses, the ball gowns, the Wedding Dress saga. I’ve done it, and it felt like that. Methodical. Professional. Same page. Doing a job. Kind. Do you understand how rare that is for me? I am 30 years old, and I can count on very few hands the number of times my body has been approached with that kind of care.
Now, am I still scared? Absofuckinlutely.
Part of my brain keeps waiting for someone to tell me they made a mistake. That insurance will say no. That the name on the paperwork is wrong. That somehow this isn’t actually happening.
I keep looking at that picture and the voice keeps saying:
“That’s mine?” With a question mark and a little half smile.
The woman today said that where they work, they like to stay cautiously optimistic. So I think I’m going to do that too. Cautious optimism.
Something good happened today. I’m going to let myself believe that maybe it keeps happening.
