245

Living with MS: heat, grief, and 12 minutes on the clock

This week I fired my neurologist.

Not because she was unkind.

I’ve flown with aviators across the full spectrum of how Crew Resource Management is practiced. Some were warm. Some were abrasive. You can be blunt and still be a hell of a pilot — running checklists like a symphony, thinking three steps ahead, anticipating failure modes before they surface.

Kindness is optional.

Competence is not.

And competence isn’t just knowing procedures. It’s knowing which checklist applies to which system.

No pilot gets excused for running the wrong checklist on the wrong aircraft.

That’s not personality.

That’s risk.

I was in genuine pain during my last MRI. Not claustrophobic. Not anxious. Overheated. My spine lit up. My mobility faltered. It felt like being slowly microwaved from the inside out.

When it was over, I could barely get off the table. Standing took effort. Walking was unstable. The technicians noticed. So did I.

That wasn’t anxiety.

That was physiology.

Afterward, I wrote asking if there were adjustments that could be made to future scans — different sequencing, cooling intervals, anything to reduce the RF-induced heat sensation.

The reply came back through her nurse:

“He can be sedated next time.”

Sedation is for anxiety.

Sedation is for claustrophobia.

If the system is overheating, sedation isn’t just the wrong drug.

It’s the wrong checklist on the wrong aircraft.

It wasn’t simply the wrong medication.

It was the wrong model.

She was using the wrong checklist on the wrong system.

No pilot could be excused for that.

So I reached out to a contact at the Rocky Mountain MS Center — someone who had previously and politely cautioned that several patients had requested a different neurologist after similar experiences.

I didn’t leave the system.

I requested a different pilot.

A few hours later, I came down with my first legitimate fever since being diagnosed with MS.

The timing felt almost satirical.

They call it Uhthoff’s phenomenon — heat temporarily worsening neurological symptoms.

It’s accurate.

But it sounds like the title of a conference presentation — neat, contained, and safely removed from the body experiencing it.

Accuracy explains the mechanism.

It does not capture the feeling.

In real time, it doesn’t feel clinical. It feels like something is slipping. Like the insulation on your wiring is fraying under heat. Signals that used to move cleanly now stutter.

You send the command. It arrives distorted.

Pain creeps in and whispers that you’re wasting away, even when you know you’re not.

I know the physiology. Demyelinated nerves conduct poorly when heated. Increase temperature and conduction falters. Cool down and it improves. No new lesion forming. No neurons dissolving in that moment. Just electrical inefficiency.

But when vision strains and your legs hesitate and your brain has to brute-force a single stable image, it doesn’t feel like “temporary conduction block.”

It feels like rapid loss of agency.

I attempted to jog.

It turned into an old-man shuffle.

Five blocks.

Later that night, sitting with the fever, I thought about something my barber once told me.

“You have to forgive your mother,” she said. “But you also need to ask for her forgiveness.”

I remember looking at her with absolute confusion.

My relationship with my mother has always been complicated. She knew that. Forgiving her was one thing. Asking for her forgiveness felt upside down. For what?

I let the comment pass.

Sitting there overheated and unstable, it became humbly apparent that I never truly understood what my mother endured with MS. Hers was more widespread. More aggressive. I never grasped how heat could dismantle a body from the inside. I never understood what an MS hug really meant — that constricting neurological pressure wrapping the ribs.

I thought I understood.

I didn’t.

Grief is a silent teacher.

I wish I could say the fever broke and clarity washed in.

It didn’t.

It raged on until I eventually passed out on the couch.

The next day, it was 66 degrees and sunny. No wind. I attempted to jog again. I wore sun gloves, a skier’s wind scarf, and a thick baseball cap because I thought maybe this was a fever chill.

Instead, I overheated.

I removed the gloves. Took off the scarf. Walked home. Lay down for thirty minutes.

There’s something uniquely humbling about stopping not because you’re tired — but because the wiring flickers.

That night was the local CrossFit Open. 26.1. Wall balls — repeated squat-thrusters with a medicine ball thrown to a target — compress, drive, release, catch, repeat. Then 24-inch box step-overs. Then back to wall balls. Then back to box step-overs. Twelve minutes of cycling between the two. No one finishes. Your total reps when the clock expires is your score.

Visual tracking. Head movement. Force transfer from hips to shoulders. Repeated impact and absorption. My cranial nerves were already irritated from heat and fever.

It looked reckless.

I didn’t want to go.

But I have a guilt complex with no-showing.

Earlier in the week, another athlete had asked if I’d be there with our soon-to-be seven-month-old. She’d held him once when he was just 18 days old and asked if she could again.

So I went.

Lil’ Benito was ecstatic to be there — not because it was loud or chaotic, but because that’s just his nature. It still shocks me how joyful he is. I used to assume it was parental bias. But strangers started noticing it too.

And not surprisingly, Benito did not disappoint that night.

He was joyful in that wide-eyed, almost sacred way — like Elmo discovering the world for the first time. Watching. Absorbing. Learning. Smiling at everything as if existence itself were fascinating.

There’s something quietly grounding about that.

My nervous system flickers.

His is just coming online.

I’m negotiating conduction blocks and heat sensitivity.

He’s discovering gravity.

Within minutes, another gym friend asked how I was doing. I told him the truth. I felt unwell. I wasn’t sure how I could safely maneuver during the workout.

He paused and told me his daughter had been diagnosed with MS last spring.

He mentioned her eyes.

That was enough.

MS feels abstract until it has a child’s face.

I asked him to let me reach out first.

I signed up for Scaled.

Lighter wall ball. Step-ups instead of box jumps. Same standard. Modified input, preserved output.

I stretched more than I lifted.

Benito was passed between friends like something precious. One athlete even wore the Tactical Baby Gear carrier while judging and recording scores.

My brain felt surprisingly clear during the workout.

I finished.

245.

It’s more than zero.

Zero would have been staying home. Zero would have been hiding. 245 was participation under constraint.

Later that night, sitting on the couch watching a show with my wife, I felt the headache bloom around both eyes. My brain working overtime to produce a single image. Every frame requiring effort.

The cost shows up later.

And I’m okay with that.

Because agency isn’t about dominating every variable. It’s about adapting in real time.

This week I requested a different pilot.

This week I understood something about my mother I should have understood years ago.

Both things can be true.

I am not symptom-free.

I am not invincible.

I am not wasting away.

My wiring flickers sometimes.

His is just beginning to spark.

I showed up.

I scaled.

I adjusted.

I cooled down.

And I am still here.