Some backstory for the perennial question
Sean
Jul 24, 2025
Howdy! My name is Sean, and I’ve got a fucked-up neck. Or, in more accurate terms, my head isn’t screwed onto my neck properly. Or, in more accurate terms, I’ve got ligament damage in my upper cervical spine. Or, in more accurate terms, I’ve got damage to my alar, transverse, and posterior longitudinal ligaments (among others). Or, in more accurate terms, I have both traumatic and degenerative, acquired craniocervical instability affecting my c0-c1, c1-c2, and c2-c3 joints. Or, in more accurate terms, I’ve got a fucked-up neck. Or do I? I don’t really know, but here’s the primer I wish I could give to friends, family, and, quite frankly, the world at large, about the last two years of my life. Sorry, the Modest Mouse references have already started.
In the Fall of 2023, about a week before my sophomore year at UCSD was set to start, I was guiding a group of 7 incoming freshman on a backpacking trip through the High Sierra. Given that it was the final day of the trip, the guides woke up extra early, packed our bags, and rustled awake the groggy participants with a note telling them to pack up camp by themselves and meet us at the van. It was their chance to put into practice all the skills they had learned over the past 8 days in the wilderness. With the note delivered, we headed off down the trail in the pre-dawn blackness of 4am. Once out of sight of the disgruntled and confused neophytes, we turned on our headlamps, though mine barely had any charge left.
We had, after all, been guiding various trips nonstop for 1.5 months. Starting in Baja California in an attempt to kayak the Sea of Cortez, Hurricane Hillary chased us to the Black Canyon of the Colorado River where we only had a few days of blue skies before the 2 coast guard boats pulled up on our campsite and gave us a stern evacuation warning: Hillary had arrived. From there, we spent a few days in the Laguna Mountains above San Diego, before finishing with two back-to-back 9 day backpacking trips out of Lake Thomas Edison in the Western Sierra. To an outdoors-obsessed 20-year-old, getting paid to hang out with your best friends and show newbies the magic of nature was like paying a junkie to mainline. I couldn’t have imagined a better summer job.
As we walked down the trail, conversations drifted along from the upcoming school year, to relationships, to which participants were most annoying (our answer was all of them, this group was a bit bratty), when BAM! I was knocked to the ground by a tree running over the trail that my fellow guides had been short enough to walk under unencumbered. I quickly got up, brushed off the dirt, and told my friends that I was fine. Which, in a way, was true. I felt no immediate effects, but from my prior experience with head trauma, immediate effects are a poor indicator of delayed effects.
We made it back to the van, followed soon after by the participants, who were a bit incredulous that we had really let them hike out on their own. What if a someone got hurt, they said. To which I thought, what if a guide got hurt? I still didn’t really feel much, so we loaded up the van, and began the arduous drive back to UCSD. Sure enough, a few hours into the drive, I developed a headache, fatigue, and motion sickness. By the time we got back and had to take the participants out to "fancy dinner,” as we called it, I was laying on the floor of the gear closet in our shop, watching the ceiling bounce around like Dead and Co. visuals at The Sphere. I got my act together long enough to make it to dinner and see the participants off the next day, but it was clear I had some medical issues to take care of.
I wish that were the end of the story, but unfortunately not.
That concussion and whiplash ruined most of my fall quarter, but I still got straight As in four upper division CS classes, worked two jobs, and with enough vestibular/neck PT, by December, I was a fully functioning human again. I knew I had dodged a bullet by escaping that SNAFU without any lingering symptoms, but at the same time, I was an impressionable 20-year-old college student who was addicted to adrenaline, climbing rocks, and running long distances, preferably some combination of all three. So, I kept doing risky trad climbing, kept doing long solo runs into the Sierra backcountry with no backup plan, kept trying obscure and chossy alpine routes, and kept generally tiptoeing the line between safety and recklessness. For a while, it worked. I saw some pretty beautiful and desolate country, climbed the Kor-Ingalls route on Castleton Tower, meandered my way up the East Buttress of Whitney and the NE Ridge of Mt. Williamson, and squeezed the Palisade Traverse into one long 23hr 40min day. In the end, though, it wasn’t anything in the mountains that did me in.
Every year, I participated in a 10-day mountaineering competition called the Sierra Challenge. It was truly the highlight of my year; I had met so many friends, made so many memories, and climbed lots of awesome peaks over the 6 years I participated. So, in early August 2024, like I do every year, I packed up my trunk and headed for the Sierra. Only this time, my car broke down about 30 miles into my 6-hour drive. After a panicked call to my dad and some google sleuthing, I found a shop that could fix it but was told it would take until at least Monday. It was Friday. That meant missing 3 days of the challenge, but it was alright, life would move on. I called some friends to get a ride back from the auto shop and carried on with my day. As it turns out, that car failure indirectly led to dropping out of college for a year.
That next day, partly due to unexpectedly having free time and partly due to a mysterious compulsion I can’t exactly place, I decided to do my neck PT that I had been neglecting. I had been going once a month since my initial injury, purely to stave off any future neck pain. Since I was barely experiencing pain or any symptoms on a daily basis, though, I had been neglecting to do any of my exercises. So, when I finally laid down and set my timer for 2 minutes, I didn’t really know what I was doing. Never mind that I was only supposed to do my exercises for 15 seconds, or that I couldn’t remember the technique I had been shown a month ago; I was just going to go for it. I hit start and cranked my head off the floor. It wasn’t unlike doing a crunch, only my torso stayed on the floor, and I was using my neck instead of my abs. About a minute in, my head started to shake, but, like I was used to with exercise, I pushed through, determined to make it to my goal of 2 minutes. The shaking intensified as lactic acid filled my neck muscles, but I finally made it to 2 minutes and rested my head. As expected, the fatigue subsided, and I was fine. So, I repeated the process a few times, each time having the same result. Satisfied that I had done my due diligence to take care of my neck, I forgot about PT and went about the rest of my day.
I lifted my head off my pillow the next morning, and I immediately knew I had messed up in a bad way. A sharp, searing pain radiated from my occiput down the rest of my cervical spine. Worse, as I turned my head, I felt a vague slipping feeling in my upper cervical spine. The entire sensation somewhat defies my capabilities as a writer, but it was a little bit like my head was the ball resting precariously on the cup of a Kendama toy, only the Kendama toy was simultaneously being fed an electric current and in close proximity to a blowtorch.
Despite these warning signs, the idea that I had somehow done significant damage to my neck by raising my head off the floor too vigorously seemed like a ridiculous proposition, so I went about the rest of my day like normal. Surprisingly, all went well for a while, including going for a run. However, while trying to drive back from my run, though my pain was not any worse, I noticed I was significantly more sensitive to lights, somewhat disoriented, and just generally felt off. Again, these vague sensations are difficult to convey to someone who hasn’t experienced them, but this one felt sort of like being thrown into a blender and having the setting turned to puree. A most displeasing feeling, to say the least. After arriving home, I sat down and had a panic attack. I had this impending feeling of doom that I couldn’t quite place. I knew something was wrong with my neck, but I didn’t know what.
And thus, I embarked on a journey I that I didn’t even know was on the list of possible journeys I could take; chronic pain, a revolving door of vague, confusing, and debilitating full-body symptoms, a few ER visits, countless appointments with specialists all over the US, lots of gaslighting, lots of misdiagnoses, a few proper diagnoses, lots of lost friends, a year (and counting) out of college, thousands of dollars spent trying to find a cure, and just generally watching my life and health blow up in front of my face.
This blog is an attempt at making sense of how my life changed that day in August. An attempt at making sense of what it’s like to go from a regular college student to an isolated medical mystery. An attempt at spreading awareness surrounding complex chronic illness, disability, and chronic pain, especially among people in their 20s. And, ultimately, an attempt at finding an outlet when I’ve lost all my other ones. After all, that’s all we’ve got, right?