A Journey Through Post-Concussion Syndrome + The Changes That Followed

TBI (traumatic brain injury) recovery is a fucking SAGA. After my concussion in November 2019, a lot of things changed. Some of them I’ve shared, most of them I haven’t. Mostly I retreated, but recently, I’ve been slowly returning to work and play and the activities in between. 

I was lucky. My head rattle was “mild.” I never lost consciousness. My memory remained in tact— and impressive as ever according to my doctor and all the tests he has me do. I was down, but not out. Physically, I had limits, but wasn’t incapacitated. Emotionally, I struggled, but had the support to make it through. Mentally, I had my facilities, but they tired easily and often. 

My injury was mild, but its effects on my life felt severe at times. Zoom out. Big picture. A year is not so long. But having no idea whether the couple of month of recovery would turn into a year or two or more was agony. Even now, I’m not 100%, but I’m so much better, I take the wins where I can.

If you’re dealing with a brain injury or managing other long term health consequences, and you’re looking to feel less alone, I hope you can find a little something like that here. Alternatively, if you have a loved one you’re trying to help, perhaps this can shed a tiny light of understanding and empathy. Or maybe you’re just curious, and questioning, and that is another great reason to dive in here. Let’s begin.

ALESSANDRA, BONESEED, AND THE GREAT CONCUSSION OF 2019

On November 7, 2019, I got home from my Global Entry interview. I was Japan-bound in two months and my now husband insisted we make the process as easy as possible. It would be my first non-family related trip with a significant other. My first time in Asia. My first time with my own snowboard designed for the radical POW promised on the fluffy mountains of Hokkaido. So many wonderful and exciting firsts on the horizon.

I decided to tackle reorganizing my closet but had forgotten about a wayward hammer that was resting on top of a box. One of those plastic storage bins that held a delicate family heirloom. An old book from the old country. Cuba. The very box I needed to grab for rearranging purposes. 

As I grabbed the box from the upper shelf, the 15 pound metal stick slid off the top of the aforementioned box and clobbered the back of my head as I attempted to duck for cover. I was hurt, but not down. I crawled to my bed, curled my body into a tight ball, and took deep breathes through the acute pain. It’s just a flesh wound, I thought.

After assessing the damage and noting the teeniest bit of blood, I tried to take it easy for the rest of the day, but eventually started searching for answers as to whether or not I had a concussion. After getting the bill for my sprained elbow that I literally had x-rayed in 20 minutes two months prior ($4K), there was no way I was seeking medical attention unless absolutely necessary.

The next day, sensitivity to sound kept me out of a training for a new workout class. I worked at a gym at the time. I watched from the outside as my colleagues told me to take this thing seriously and shared their own complications from brain injuries. I tried to stay calm while screaming internally. 

The next evening, it happened. I went out to dinner with my now husband’s family. A headache set in. I swallowed some ibuprofen to help. Then came nausea. But it was weird nausea. I was still hungry. I still ate dinner. But I felt unwell and burped a lot. The moderate ambient sound of the busy restaurant started to overwhelm me. I powered through the evening, but couldn’t manage the drive home. The car and street lights make everything worse. Something was definitely wrong. 

Over the next two months, I played a rather unfortunate game with myself. The symptoms would recede when I let myself rest, but once I tried to get back at it, either working at my laptop or driving to teach, I’d hit a relapse point and suffer a range of symptoms including sensitivity to light and sound, tension headaches, migraines, neck and back pain, and nausea.

The cycle hit its peak on December 3. I had bought tickets to a Rhye concert months in advance. I hadn’t been to a concert in ages. I thought if I rested up and wore ear plugs maybe I could do it… but I couldn’t. I had to leave by the time the second song came on. Hysterical. Broken. Isolated.

I took an Uber back to my then boyfriend’s apartment, crawled into his bed, and sobbed alone until he arrived after the concert’s end. So silly it seemed to cry over a concert, but of course, it wasn’t just the concert. It was the memories I was excited to make with the man who is now my husband. The songs that had already become threads in the tapestry of our relationship. And yet, it was about even more than that.

The isolation of this brain injury extended as deep as the caverns of my previous battles with depression. All I wanted to do was reach out and find safety in community, but being around more than one person was too much for my fragile nervous system to handle. I wanted to bury myself in work, but looking at a computer screen for more than an hour triggered headaches and nausea. Driving was agony, especially at night when photophobia set in, and once I made it to the yoga classes I was scheduled to teach, I struggled through nausea flare ups for the first half of class. Still, that at least provided some familiarity. Some steadiness, even if my classes weren’t as dynamic. Even as attendance dwindled. Even as I tried with everything I had to keep going and teaching and writing and posting.

I felt like I was disappointing everyone. Who was I without my sparkling personality? Without what I could offer? Without an endless supply of energy? People loved me and came to me because I was sunshine, a bright light, mischievously playful. Sure I was a Sad Girl™, but I was a playful Sad Girl™ frolicking through dungeons that I lit up with the torch of my inner being.

That was all gone. All the inner work I had done on myself had disappeared, or at least that’s how it felt. I was constantly anxious, easily startled, spiraling through self-doubt. I felt like my brain and body had reverted to all the patterns I had spent years rewiring to live better. The tools I relied on, the ones I taught my students and mentees, were failing me. I constantly felt ill, and trying to do something about it often made me feel worse.

At the same time, I was battling a flea infestation in my house which only made the anxiety so much worse and forced me to shuffle between houses. I’m so lucky I had my mom and now husband’s places to take me in during this time, but feeling unmoored in myself made this external unmooring even harder. I was grateful I had places to go, but I felt stuck, untethered, listless, and wholly dependent on others to help me through this period of transition and recovery. 

I also caught back to back rounds of strep throat and was bombarded with antibiotics. I also started struggling with recurring yeast infections — which I am still dealing with and realize it probably lingers for a combination of reasons but most notably the chronic stress on my nervous system. I’ve also had some on and off digestive issues. Pretty sure my gut flora is still recovering. It was a lot. It was frustrating. It was hard. There was a lot of crying.

But the worst part was my inability to sleep. I would wake up for hours, writhing in discomfort, and exhaustion, and some pain. Cannabis helped sometimes, but I hated relying on it. Advil PM helped sometimes, but other times it made it worse. There was restlessness before bed, chronic pain in my neck and back that caused discomfort, this sensation of waking up from dreams (occasionally nightmares) and feeling super awake. I also started running extremely hot. Not sweating. Just hot to the touch. I would also get a song lyric stuck in my head that would repeat and repeat. Sometimes I would hear noises that weren’t there. All these things made it hard to get more than 3-4 hours of sleep most nights. 

All these things alone would have been fine, but together they pinned me down. Overwhelmed by all the symptoms, I had no idea how to get help.

Getting through shit is messy. The spiralic nature of healing reveals itself so clearly during these long term trials. I cycled between trying to see this as a learning opportunity to feeling like I was being punished by the universe for fucking up somehow. I cursed myself, and the crushing weight of my own expectations regularly smothered me until an exorcism of waterfall tears burst me open and crumbled my broken body with its broken brain on the wood floors.

When I was battling strep, the folks around me were more sympathetic, but when it was “just” the post-concussion symptoms, I felt like everyone was dying for me to snap out of it. So there I was. Stuck. Untethered. Listless. Dependent. It’s not like I could take on extra work, so I could afford move out on my own. I could barely manage the work I already had. And I wasn’t giving myself the space to get better because it didn’t feel okay to just be where I was.

Despite it all, I did make it to Japan. I was nervous, caught a cold en route, and had to sit out more dinners and outings than I would have liked, but I was able to do more than I expected (as long as I had ear plugs and my special pink glasses for artificial light). My first day on the slopes, I broke down at the top of the mountain. I sat and cried, terrified I would fall and hit my head (with a helmet on, but still). After my partner lovingly promised me we could hike back up and ride the gondola down if I wanted, I decided I could do this. And I did. My body remembered how to move on a snowboard on a mountain. I started to believe in my recovery.

Then COVID hit, which was a mixed blessing for this situation. The pressure was taken off going out and being places that my nervous system didn’t like, but I had a new source of anxiety. It’s been weird and hard and different for everyone, but the onset was probably helpful in some ways to my recovering brain.

A few months later, I had a massive relapse. The sensitivities kept flaring up. I kept having to take recovery breaks. I was getting scared again. That’s when I reached out to an old friend from high school. Although we were never close, she had suffered a far more serious concussion a few years prior and had been posting about her experience on Instagram as @healinbloom. I called her up to talk about the experience.

That 30 minute conversation was more validating than anything else I had done so far. I was not alone. I was not crazy for still feeling bad. My PCP had told me back in March that is wasn’t a concussion if I didn’t black out (false), especially since nothing showed up on my MRI (which is common for mild TBI). I knew he was wrong, but not having a professional take you seriously can really make you feel crazy. After that conversation, I knew I was not weak for requiring more recovery time, so I sought help. I worked with the Bagnell Brain Center. I tried exercises for my eyes, neurofeedback, vestibular therapy. It took time, but my symptoms improved. I was able to be around several people at a time. My very loud family was able to converse at full volume around me. I was able to start working again, see more clients, write more. Every month brought new victories. Some of it, I am certain, was time. A lot of it was having a professional team rooting for me and making suggestions on the long road to recovery. I am now so close to normal. Mostly recovered. Okay.

The scary part wasn’t that I felt bad. It was not knowing if I would get better. It was not knowing how long it would take. The brain and the nervous system are tricky things. There is so much we don’t know. We know how a bone heals. How scar tissue forms on sprained joints. But brain recovery is highly personal and way more variable. It’s hard to hold on to hope and self-esteem when the part of your body that generates the feeling and outlook is injured.

I wrote in my journal: “These feelings don’t feel like they are coming from me but they are moving through me.” Although I wasn’t really meditating at the time (it just made me feel worse most of the time), my 5 years of meditation gave me enough awareness to know it wasn’t really my mind that was creating anxiety, but more something unrelated to my actual thoughts. My MRI was “unremarkable.” I had no structural damage, just some faulty wiring. The way Dr. B explained it to me was that when the brain gets injured, it tries its best to heal quickly, but the connections that form may not be the most efficient.

My wiring still isn’t quite up to par, my eyes still hurt if I look at screens too long, my peripheral vision still plays tricks on me, too much tension can lead to migraines, but it’s so much better. And recovery happened because time passed. Because I got help. Because I had support. Not because I willed it so. Not because I individuated my way though some spiritual awakening. Because people who care about me checked in and helped me find ways to make this time easier. 

So it’s because of this experience that I, and Boneseed as a result, have changed. It’s because of this, my practice has become more flexible and integrated in ways that don’t feel rigid or pure. I’m done with purity. I’ve embraced the mess. Or at least I’m trying to.

I’m done with gurus and “healers” who preach about mindset over everything. That personal autonomy is the only way to get through this life. We need the individual AND the collective, or more specifically, community. I came out stronger on the other side of the concussion not just because I worked on my own healing, but because I had the support of my familia, even though they didn’t always understand what I was going through. They still gave me love, space, and a soft place to land. 

And so, of course, I’ll continue to teach you how to cultivate a better relationship with yourself. I’ll use all the best tools in my toolbox from yoga to tarot to philosophical prodding to guided meditation. But please don’t use these spiritual tools as a replacement for community. When shit hits the fan, we need each other, despite the lionization of “rugged individualism” that has seeped its way in to become “spiritual elitism.” We are all interdependent. Because life is chaos. Because shit happens even when you strive to “vibrate at a higher frequency.” Because nothing is promised, except right now.