I don’t know how much I’ve really talked about this publicly, but part of my cerebral palsy comes with severe spasticity — and when I say severe, I mean Charlie-horse-in-your-legs-24-hours-a-day severe.
Not soreness.
Not stiffness.
Not “oh I slept funny.”
I mean full-blown, muscle-locking, never-lets-go contractions that feel like your legs are trying to fistfight your skeleton from the inside.
Imagine the worst leg cramp you’ve ever had.
Now imagine it never stops.
Welcome to my Tuesday.
So years ago, doctors put me on a drug called baclofen. (Yes, I double-checked the spelling because I can never remember if I’m pronouncing it right, let alone spelling it.)
Baclofen calms muscle spasms. When it works, it works beautifully.
But here’s the catch:
If I take it orally, I’m unconscious in about 20 minutes.
Not sleepy. Not relaxed. I mean full system shutdown.
Take pill → Say goodbye to loved ones → Wake up in Narnia three hours later.
It doesn’t just relax my legs — it shuts down the entire command center. Completely useless if you plan on functioning like a human being that day.
So around 2012, I had a baclofen pump implanted.
And this is usually where people stop me mid-sentence:
“A pump… inside your body?!”
Yeah.
Let me break it down in technical terms.
I am, medically speaking, a hybrid between a human being and a lawnmower.
Inside my abdomen is a small medication reservoir — think gas tank. Connected to that is the dosing mechanism that controls how much baclofen gets released and when.
And here’s the part that never stops being funny to me:
The timing mechanism — the thing that regulates the drip rate — is manufactured by Timex.
Yes.
The watch company.
So there is literally a watch inside me.
Not metaphorically. Not figuratively.
Somewhere in my torso, a tiny Timex is ticking away, managing my spinal fluid like it’s timing laps at a swim meet.
I’ve joked for years that if I ever get abducted by aliens, they’re going to cut me open and go:
“Wait… is this guy running on horology?”
It’s part medical device, part steampunk science project.
But here’s the truth — as ridiculous as it sounds — it works.
My spasms dropped. Mobility improved. Transfers got easier. Life got a hell of a lot more manageable. Outside of the little eight-year Florida life derailment — which we’re not unpacking today — the pump has been one of the best medical decisions I ever made.
But because the medication lives inside my body, the pump has to be refilled every three months.
Miss a refill?
You’re not uncomfortable.
You’re in medical crisis.
Baclofen withdrawal is life-threatening. Not dramatic. Not exaggeration. Actual emergency-room, nervous-system-shutdown territory.
So refills are non-negotiable.
Which brings us to last week.
After moving back to Wisconsin, I reconnected with UW Hospital Rehab for pump refills. Smooth process.
Then I moved to Eau Claire.
Which meant transferring care to Mayo Clinic — and if you’ve never switched between major hospital systems, imagine trying to transfer your cable service… but if they screw it up, you die.
Paperwork. Referrals. Intake. Evaluations. Scheduling delays.
So much process that they couldn’t get me in before my refill deadline.
Which meant I had to go back to Madison… for a 20-minute appointment.
Twenty.
Minutes.
That’s how long it takes to “change the oil.” They stick a needle into the pump port, suck out the leftover meds, and refill it like topping off windshield washer fluid.
Human Jiffy Lube.
But getting there?
That’s where the real comedy started.
Option one: Bus.
Three hours each way.
Random bus stop drop-off.
Hope paratransit finds me.
Pray I don’t end up living there.
Hard pass.
Option two: Rent a wheelchair-accessible van.
Expensive — but sane.
So I called A&J Mobility here in Eau Claire. I’ve used their Madison location before — always solid.
Explained everything:
Pick up Wednesday evening.
Doctor Thursday morning.
Return Thursday before close.
Simple. Clean. 24 hours.
They confirmed it. Even called Monday to verify.
So we pick up the van Wednesday around 4 PM. Brand new. Gorgeous. Felt like I was rolling around in the Cadillac of accessibility.
Fast forward to Thursday morning.
I’m sitting in my appointment — literally waiting to get my abdomen refilled like a DEF tank — and my phone rings.
Rental office.
“Where’s the van?”
I said, “At my appointment. Like we discussed.”
She says, “Well, I’m going to have to charge you for two days.”
Record scratch.
Apparently the paperwork said pickup at 1 PM and return by 9 AM the next morning.
Which is not what we discussed.
And even if it were… do the math.
4 PM → 9 AM ≠ 24 hours.
1 PM → 9 AM ≠ 24 hours.
Time works the same in the disability community, last I checked.
So somewhere between phone calls, verification calls, and paperwork entry, something got crossed.
And now I’m getting billed for two days for what was supposed to be a medical milk run.
Hickey? Yeah. Feels a little hickey.
Now don’t get me wrong — I’m grateful accessible rental companies exist at all. But in this area, you’ve basically got them… and maybe one other company that seems to have vanished into the accessibility Bermuda Triangle.
Limited infrastructure means when something goes sideways, you don’t have a lot of backup options.
But wait — it gets better.
Next refill cycle, in theory, I shouldn’t have to go back to Madison.
I’ve got an appointment up here in Eau Claire.
Great news, right?
Until I find out who manages baclofen pumps locally.
Not rehab doctors.
Pain specialists.
Specifically… anesthesiologists.
Which is weird as hell to wrap your brain around.
Apparently they handle intrathecal pump systems from a pain-management standpoint.
Fine. If you can change the oil, I don’t care if you’re a magician.
But before they’ll take over management, I have to go through an evaluation so they can decide if I’m worthy of local oil changes.
Which brings me to my newest adventure:
Medical transportation coordination through a broker called MTM.
And let me tell you…
Complete.
Shit.
Show.
Authorization confusion.
Scheduling chaos.
Paperwork purgatory.
And my personal favorite:
They weren’t even sure they could approve a wheelchair-accessible vehicle… to transport me.
A wheelchair user.
Because — wait for it — the State of Wisconsin apparently didn’t fill out the paperwork correctly.
So now there’s debate about whether I “qualify” for accessible transport.
I feel like existing in the chair should’ve been a strong clue, but here we are.
I’ll know more after the evaluation.
If MTM actually shows up with an accessible van, I may throw a parade.
So for now:
Pump’s refilled.
Spasms under control.
I’m good for another three months.
All thanks to the fact that somewhere inside me, a tiny gas tank and a literal Timex watch are working together to keep my nervous system from staging a coup.
If I don’t laugh about it…
I’m absolutely going to punch somebody in the face.
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