I’ve worked in manufacturing and have for my entire adult life, which means I travel to a lot of factories and spend my days on my feet. On that normal Monday I was scheduled to go on a business trip like I’ve done hundreds of times. Bring my son to daycare, run some errands, take my dog for a hike, catch a flight, go into the office. Simple. Routine.

The day was going exactly to plan, got some stuff done, went for a nice trail run, played with my dog, and went home to pack and leave. When i jumped in the shower I noticed my left hand was numb. I chalked it up to an old rugby injury acting up. I probably tweaked something horsing around, wasn’t the first time.

After the shower, my arm was now numb to the shoulder. I ignored it, I had to get on the move. While I got dressed and packed my suitcase I felt unsteady, my feet and legs felt like rubber and feet were getting numb.

At that point I couldn’t ignore it anymore. I managed to go downstairs, scooting on my butt to make it down safely. I called my wife and told her that I wasn’t going on this trip and I needed to go to the hospital. I didn’t know what was going on, but I was scared and knew I needed help.

My wife came immediately home. By this point my hands were so weak I needed her to put my shoes on me, I couldn’t even grip the laces. She helped me to the car and drove to the ER. I managed to slowly, carefully, walk in. Once I reached the registration desk, all I could tell them was that I couldn’t feel my legs and was about to fall down. They grabbed me a wheelchair and immediately brought me back. I didn’t realize at the time it would be a few weeks before I attempted to stand up again.

By this point a little over two hours had passed since I first noticed the numbness. I was in a hospital bed, I couldn’t move or feel anything from below my waist, and the paralysis was still ascending. I got rushed into an MRI that was inconclusive, in hindsight they were using a lower power MRI in a mobile trailer while their normal facility was upgraded. It wasn’t until later, at a different facility, that my lesions were clearly seen.

While the team worked to determine what was going on and simultaneously worked to find me a bed at a hospital with a dedicated neurology team, the paralysis continued to ascend. The doctors brought in a respiratory therapist to monitor my breathing to make sure I didn’t need to be intubated. Thankfully the paralysis stopped at my chest and I remained able to breathe under my own power.

At this point I was getting MRI’s every hour or so while the team tried to get a bead on what was going on. The running theory became Guillain-Barre, but my symptoms didn’t add up.

By that evening, the team was narrowing down options for a transfer. Simultaneously I was now begging for a catheter, I had lost the ability to urinate but not the desire. I had never expected in my life to beg for something like that, but here we are.

Around 3am, I secured a bed in the emergency department at Albany Medical Center in Albany, NY. The helicopter couldn’t fly due to weather, so I got loaded into an ambulance.

After arriving in Albany, I was admitted, seen by their neurology service, and immediately started on high-dose IV steroids. They correctly guessed I had TM and that was confirmed by a follow-up MRI.

My overall experience from here will be familiar to people that have had any sort of spinal cord injury. Steroids, more MRI’s, poked by pins, hit with hammers, and lumbar punctures. My tests at that point weren’t to determine what I had, but WHY I had it. Everything came back normal or negative. No sign of multiple sclerosis, no sign of MOG antibody disease, etc. I was told I had idiopathic transverse myelitis. It could have been caused by a virus I picked up, but at that point it was impossible to tell.

My first morning after being admitted I had a meeting with the neurology team and the fellow and the consulting doctor stuck around to answer questions about my condition. At this point I was confused, scared, hurt, and very very angry. About 24 hours ago I could run, I could pick up my son. I traveled the world for work! I had a family, a career, a life! So I asked the obvious question, when do I get better? When do I go home?

The doctor told me that I needed to start coming to terms with the fact I would never walk again. I felt like I had just been hit with a sledgehammer, I had never had to wrestle with the fact that so much of my sense of self was tied to movement. I raced bikes, I played rugby, I skied! In an afternoon, all of that was gone with no explanation.

I ended up being in Albany Medical Center for a few weeks, at the end of which I could walk very short distances with a walker and was otherwise in a wheelchair. I’ll share my next stop on my journey next, acute inpatient rehab!