Flattening the Nerve: A Brain Injury’s Journey Through a Pandemic

Part 1:

Part 2:

The Road

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Intro

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Phase -1 (February): This gonna be an issue?

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Phase 0 (March): Hm, not looking good. Bunker down.

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Phase 1 (April): Flattening the Nerve. Thank you to essential workers!

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Phase 2 (May-June): Reopening our Eyes and Testing

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Phase 3 (July-August): Reopening Rec...I mean, neck (and back)

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Phase 4 (September): Main Reopening, more like Brain Reopening

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Phase 5 (October-November): Lessons in Reopening too Fast

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Phase 6 (December): A Glimmer of Hope

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Phase 7 (2021 +): On Path to New Normal

Taken hours after accident

For most, 2020 felt like getting hit by a ton of bricks, with routines shaken and unexpected challenges. For me, it felt like getting T-boned by a car while riding a bike and hitting my head hard on the concrete…oh wait.

Let me preface this by saying that I’m sharing my story to shed light on our body’s power to heal itself given the right resources (and how difficult it can be to find those resources). As I heal, I find it helpful to read stories of those going through PCS and the ways they try to overcome it. I also wish to share the impact of head and spine injuries, in hopes that we take appropriate caution. So here goes: my ongoing journey from head pain to head gain! If you want more details, check out my full timeline. Remember: this is my story and the things that worked for me; Everyone is different.

It’s true. In January, five days before returning to the US after a year in five continents, I had a little accident. Helmet? Sadly not. I remember the whole thing: biking along, the driver looked one way out of his driveway, didn’t look the other, and we both kept going. I hit my left shoulder and the back of my head, behind my ear, pretty hard onto the road, and the bike was bent up too. The driver stopped and offered his help (and then offered to buy me a drink, weirdest pickup scenario ever), but I did not think to go to the hospital because, minus some tears and a few bruises, I assumed I was fine. The next few days, I went on with my adventures as planned, and I remember being stressed, tired, and having a huge headache. But I figured, yeah, I had a bruise, so of course it would hurt.

It wasn’t until a month later that I would learn about my concussion/post concussion syndrome. Ironically, my journey much mimicked that of the pandemic in Massachusetts, USA, where I eventually returned home: a trying year long journey… and counting!

Phase -1 (February): This gonna be an issue?

Ready for flight 38 of the year

Although we’d begun to hear murmurs of the pandemic affecting other countries, at that point I was still questioning whether it was going to be a problem for me personally. I continued traveling throughout the U.S. and then onto Lisbon. My plan was to live in Lisbon for awhile — something I’d looked forward to for years — but honestly, I almost didn’t go. I was extremely anxious, felt like I could (and did) cry at any second, yet, despite all warning signs, I continued on as normal.

I travelled to Lisbon as we had the first set of COVID cases emerging in New York City. However, at that time it was a lot of ‘nah, I’m overreacting, just stressed about what could happen and not being realistic.’ Weren’t we all in for a treat.

Phase 0 (March): Hm, not looking good. Bunker down.

A quick, stressful trip to Lisbon

I was in Lisbon for six days at the beginning of the month. I fell in love with the city all over, but was not experiencing the same amount of joy I had the year before. I felt really out of it, like I was living in slow motion, lightheaded upon standing, and kind of numb to emotions. After one night of light drinking, I thought my head was going to explode from the pressure inside.

On day four, I booked a flight home. Equally as much as my body told me it was time for a reset with my family, the world told me too— vague but immediate travel restrictions were put in place to mitigate COVID spread. I returned to the US before I could be potentially locked out. 

The subsequent 24-hour layover in Morocco was the pinnacle moment of “okay, shit is hitting the fan; take cautionary and immediate action.” Now, a month post-accident, I could barely see straight at dinner, was absolutely exhausted yet couldn’t sleep, every muscle in my body was locked, and I was unbearably terrified something would happen as a solo, 24-year-old girl in a country that is far from a feminist paradise. Mind you, I had been in Morocco a year before and knew I would be fine. I just could not shake the insane anxiety. There was also a mounting fear that something about the ban would change in that 24 hours that would cancel my flight back to be with my family in the Boston area.

A few days after returning home, I got on a telehealth appointment with a doctor who clarified, “Well, you have all the signs and symptoms of Post Concussion Syndrome— probably a result of the car accident.” 

I’d just assumed I was upset about transitioning back to normalcy after my previous year of international travel. It had never crossed my mind that my symptoms were related to my bike accident.

As Massachusetts closed everything down and went into lockdown, I too bunkered down, made changes to my routine, and, for the first time in fourteen months, had no travel plans.

Phase 1 (April): Flattening the Nerve. Thank you to essential workers!

As the world focused on keeping COVID cases under control, I was also trying to keep something under control: my anxiety. This phase did not make it go away by any means, but rather brought it to a manageable level. We were all met with fear and uncertainty. And my personal super-happy-fun-time Disney World shut down too.

Evidence of spine injury that definitely added to PCS

Post concussion syndrome (PCS) is when typical concussion symptoms continue beyond the normal 3-4 week recovery window. The cause of this continuation varies greatly but includes things like high stress levels, previous spine injuries, nutrient deficiencies, vestibular troubles, previous concussions, and a plethora of others. High stress? Check. Previous spine injury? Check (I jumped off a cliff and fractured a vertebra in February 2019). Now looking back, I wonder if I got a concussion with the cliff jump too and didn’t know it. In hindsight, I would say I was maybe 30% myself at this point. Supposedly, most people recover from PCS after 3-6 months. For me, it’s already been 12 headachy months.

My most prominent symptom at the time involved the nervous system taking over all functions in what I can only describe as being stuck in panic all the time. To use pandemic terms: My nerves were running around buying lots of toilet paper, even though diarrhea was not the problem. My brain spent twenty minutes spraying every food with Lysol before putting it in my mouth, for fear that it would make my symptoms worse. And when my heart would race from the stress, my mind convinced itself I had COVID, I would take my temperature and smell a candle. Ya feel?

What most of my days included – laying down

Like the world, I realized the importance of essential workers. This included my naturopathic doctor who I met in early April (who is my hero, and who I worked with every week for the next year), my physical therapist, and my parents and siblings who came to my rescue even when I was irritable beyond belief.

I foolishly thought the situation (COVID and my symptoms) would be over in a short amount of time and, like everyone, started furiously pulling pieces together to try to understand what was going on.

While the world came to know and regularly use the terms “social distancing” and “quarantine”, I came to know the terms “neurofatigue” and “proprioception.”

Neurofatigue is not an official medical term (yet) but refers to the fatigue a person experiences after a brain injury wherein their cognitive function is limited and runs out quickly.

Time to boost the system

Proprioception is a person’s awareness of their body’s position in space. In my case, I had a hard time trusting my footing because I felt out of balance. I would walk around the house and lean on tables/counters to feel more grounded in my whereabouts.

To begin to address such symptoms, I adopted an anti-inflammatory diet. The gut and brain are hugely connected; an unhappy gut makes for an unhappy brain and the other way around. I cut out all gluten, dairy, corn, refined sugar (minus a bit of chocolate), alcohol, and processed foods. I added nutrient rich vegetables and vitamin supplements. I have played around with diet since but still maintain these elements now because it’s been that impactful in reducing headaches and discomfort. In conjunction, I’ve made sure to drink at least the recommended amount of water every day.

It’s worth noting that by mid-April I was not exercising more than walks outside— a frustration for someone who is usually very active. I also started speaking to a psychotherapist who gave me some tools for coping with anxiety. I woke up most mornings feeling like the world was spinning, and my head and body felt very disconnected from one another. I continued to work full time, for better or worse, at my own pace.

Phase 2 (May-June): Reopening our Eyes and Testing

In May, America had the awakening movement of Black Lives Matter following the murder of George Floyd. Our eyes were wide open to the racism that is so systematically engrained. Concurrently, our testing for the virus increased.

Sunglasses: a must for light relief

In my world, a meaningless speck of nothing compared to the weight of the movement, I too had my eyes reopened through the amazing work of my naturopathic doctor. By this time in my recovery, my eyes had so much pressure behind them that I felt like a horse wearing blinders. What helped to expand my field of vision were light touch and non-invasive therapies like ortho-bionomy and cranial sacral therapy. 

My symptoms also included eye floaters and blurred vision. Let’s just say it felt like taking a Zoom call with random kids running around in the background preventing me from staying focused. As time went on, and after a few sessions, the parental neurons figured out how to keep the floater “kids” at bay, and they are now only an occasional distraction.

It was at this time that the U.S. had another spike in COVID cases. Alongside, I experienced an increase in symptoms. I got a load of testing done to rule out more serious conditions, which I should have done much sooner. What caused my spike in symptoms? A brain and spine MRI, followed a few days later by an experiment with dry needling.

Turns out being in a tube with loud noises blaring, tight headphones, and the cold, sterile air of a medical room do not fare well with a head injury. Though an important procedure for ruling out serious conditions, it induced panic, and I barely made it through both exams. Low and behold, all tests returned normal: “age-appropriate brain and, other than a compressed vertebra, normal spine.” Grand.

A few, of the many, I read to understand what was going on

As for the dry needling, the therapy does serve a purpose, but not when my nervous system was so on edge and my muscles were still in spasm from the trauma. One needle in my right trapezius muscle sent shooting pain all over my head. I almost passed out and then proceeded to cry for two hours. As you may imagine, running the gamut of therapies and new doctors was exhausting, frustrating, and a lot of work for someone running on 45% brain power.

We all continued to educate ourselves on best practices for staying healthy. I spent hours reading, in between lots of cognitive rest, about how to reset a system that had been so disrupted.

Like with the pandemic, some days were better than others, some days presented the false optimism that we were almost done, some days we were left questioning everything that we had been taught. I really had no issue with social distancing because being within 6 feet of anything was overwhelming, within 6 feet of sounds was painful, and within 6 feet of light was unbearable. I enjoyed taking breaks from the news because screen time was a challenge anyway.

Phase 3 (July-August): Reopening Rec…I mean, neck (and back)

As the summer rolled on, pandemic restrictions started to loosen, along with my neck muscles. For some, range of motion and permission to move about the country was granted. We questioned if these openings were here to stay, but time suggested they would.

Back to exercise, even if light

We returned to sports with restrictions and I too started cardio exercise again, under the guidance of a physical therapist who was specialized in concussions. This was a point in my recovery where exercise did more good than bad, and I could do it lightly without making my symptoms too much worse. In the long run (ha.ha.), I need exercise as much as kids need play. My brain needed the blood circulating and the endorphins pumping. This helped a lot. It was a delicate balance of pushing my nervous system but not to the point of fight, flight, freeze in which I literally felt frozen because all my muscles would lock and my head would throb. Twenty minutes of light jogging/walking or biking was about my max.

I continued to have a headache and felt like I had to order ahead for memories and words to come to me. Or was it that I had to go out and pick them up down the road, curbside? I also had so much fatigue, as if my PPE supplies were continuously out of stock. In addition to my hand sanitizer and mask, I carried around the new norms of blue light filter glasses and a lacrosse ball for massages.

I also added in a celery juice cleanse and a few other supplements to naturally boost my system. As I understand it, when our body undergoes trauma, it releases all sorts of things that it had been storing away. Using my diet, I am healing from the inside out.

And it’s funny: this pandemic has also revealed a whole slew of national issues. From racism, to weak leadership, to our health system (or lack thereof), to climate change, and our food system, we have a lot of healing to do.

Phase 4 (September): Main Reopening, more like Brain Reopening

Face of exhaustion and feeling of defeat

You know that feeling when you’re wearing a mask, no one can hear you, you’re getting sweaty and irritated, and you want to rip it off? Where you know you’re doing the right thing but you just want the whole thing to be over? For seven months, I felt like there was a mask between me and the rest of the world. No doctor had a singular answer, and I wanted nothing more than to have it go away. I knew I was taking the right steps in recovery and making progress, but the end seemed still far from view. I didn’t get that sweaty, luckily. Then I met with a functional neurologist at a concussion center.

This was a very cool experience that I hope to share more of someday. But after 3 days of intensive brain therapy involving many robot-like devices, eye-tracking exercises, and mind games aimed at my vestibular system like naming states that start with the letter ‘S’ while clapping to a beat, I was… extremely exhausted. Honestly, I thought before I started

Went to Mars and back at brain camp

the intensive that this would be it; I would come out feeling like myself again. Yeah, no. I felt like my brain had run five marathons.

When the exhaustion wore off about a week later, I realized the functional neurologist had brought me to consciousness. My brain no longer felt miswired and my parts were working in the right way. I felt the wind against my face differently, I spent too much time acknowledging my left hand, and I laid in bed and felt more like I was actually in the bed. That being said, I was awoken into a scary reality. I was retested at the concussion center and left with the message that I was “totally normal cognitively, had a great brain, and was likely severely depressed.” Not a great diagnosis when I was still experiencing a constant headache, thought objects were closer or farther than they were, and felt around 75% capacity. Don’t get me wrong, I was very sad and appreciated her keeping my mental health in mind; I was in regular chats with my therapist to manage.

Here’s where I again had to really tune into my body and where Americans had to stick to their gut. Even when some people insisted it was all in our heads and it was time to go back to normal, evidence told us otherwise.

Now that I felt conscious and my brain was smoother, it was time to dig for more answers. I had a little push in the right direction from the Concussion Compass community. I believed all of the head pain was now coming from my neck and stress. I returned to PT regularly to massage and strengthen my neck and worked with my naturopath to find calm and heal my traumas. This too was a process and came with a lot of ache and fatigue, but I was motivated by the little progress. I tuned into epsom salt baths and kept on with magnesium to reduce stress. I also read and practiced with breath work.

Phase 5 (October-November): Lessons in Reopening too Fast

Just as I was reopening and starting to get my feet on the ground, my “business had someone exposed to COVID” and I felt like I took one hundred steps back. I tried a new chiropractic/rehab therapy (PEMF) at the same time I faced heartache and the loss of an important mentor. I closed down again and spent entire days just laying in bed.

Thank goodness for nature, my saving grace

PEMF, or pulsed electromagnetic field therapy, uses electromagnetic fields to attempt to repair tissue at the cellular level. After my third session (once a week), I was WIPED. I had three days in a row with not even enough brain energy to read a page in a book. Like a school who began in person and then returned to online, I retreated. While traumatized by the process, I put hope in this being my body’s way of healing. And with some time, my neck pain did dramatically decrease.

With yet another doctor, I got some testing done for food sensitivities and heavy metals, considered mold toxicity (we later got our house cleaned for mold, and it felt a lot lighter!), and shifted to a paleo/keto diet by completely cutting out grains (I kept this on and off, helped in the beginning then just kept low-carb diet). I added a supplement called chlorella to help remove some everpresent toxins and incorporated red light therapy before bed to wind down from the day. Also, thank goodness for nature, my only outlet.

With every new practitioner (19 total in this process), I did an entire routine. Check if insurance covers (which it often didn’t). Intake paperwork that’s never actually read before arriving. Retell my story and relive the pain. Listen to someone who is often not well-versed in concussions tell me the same things I’ve heard. All while working with little brain power and getting increasingly irritated. I did get savvier over time and became very direct with what I needed.

Despite all efforts up to this point, I continued to feel off. My head felt full of liquid and with too much movement, I felt disoriented and thus couldn’t exercise much. Even at my calmest, I felt stressed. Every task was mentally overwhelming and made my body tense just thinking about it— things even as simple as going to a store or picking out an outfit. I could be focused on something for maybe 5 minutes before my mind jumped somewhere else and maybe 30 minutes before I needed to entirely switch tasks or break. I was sleeping much better, but still not through the night. My ears were ringing, my digestion was inconsistent, and energy still very limited. Hindsight is 20/20 (and 2020), eh? These symptoms strongly suggest upper cervical issues.

Phase 6 (December): A Glimmer of Hope

A peek into my daily routine, and even with all that…

Like everyone and their thoughts towards COVID, I was DONE when December rolled around. It felt like our lives had been put on pause. There was a constant looming fear of getting sick – or in my case, worsening symptoms – and we were itching for normalcy. This may have been the most isolated I felt in the whole process because I was watching others take steps in life, albeit small, and I had completely plateaued in my recovery with every urge to want to move on. With every layer of symptoms I had peeled back, another was revealed (which makes it honestly frightening to think back on just how off I was to start).

I felt…well, let me ask you: how would you feel if you had a constant headache from February to December, had been told by now 15+ practitioners that there was nothing wrong and it was all psychological, spent all of your time researching and changing your lifestyle to little avail, listened to your friends and family tell you to just not think about it or accept this as the new normal, had been an athlete all your life and now couldn’t run more than a short bit, went from living abroad to abruptly living at home and reliant on your parents, and didn’t feel comfortable driving? Feel lost? Sad? Frustrated? Really freaking angry? Same. I cried a lot. But what choice did I have than to keep digging?

A book that really guided my path

I started reading the book Concussion Rescue, a detail of different factors that prolong a concussion recovery. Part of me was discouraged because I had addressed almost all the factors, but the one I didn’t feel like I had done justice to was chiropractic care. The author mentioned cerebrospinal fluid having a hard time moving properly with a misaligned spinal cord. Hm, my brain did feel pretty full. And my top vertebrae caused discomfort at the base of my skull.

As the saying goes, sixth time’s a charm, right? FINALLY, after five others, I found what would hopefully vaccinate me: a new chiropractor. After a thorough evaluation that included updated x-rays, the doctor found many areas for improvement. We made a six month plan that began at three days a week and got to work immediately. To be frank, I was overwhelmed after this initial appointment. Not because of information overload but because I felt heard, validated, frustrated, hopeful, angry, excited, and nervous all at the same time. 

And in poetic form, the same week that I had the appointment at the chiropractor, Pfizer released the vaccine. While we were still probably six months (at least) away from total normalcy, having a possible end in sight felt a bit reenergizing all in itself.

It’s not guaranteed that this will be it for my recovery, just like we don’t know the full effect of the vaccine, but man, I really hope it is. I will continue to put in the work to supplement the chiropractic adjustments by eating well and healing my gut, exercising as my body allows, continuing to learn meditation techniques, and resting. I continue to work with my naturopathic doctor regularly, and took half-time in January from work to allow my body to really recharge. We must continue to socially distance and hold out patience a bit longer.

Phase 7 (2021 +): On Path to New Normal

Man oh freaking man, 2020 took us for a ride, yet slowly but surely, I feel like me again. And hey, I experience new levels of joy and calm along with it.

Exactly 1 year post accident, starting to find joy

Let us proceed not to normal but to BETTER than normal. I am on a road to be healthier than I ever have been before, and have an immense amount of gratitude for little things that were foggy to me for months. I anticipate we will feel the same about social gatherings and other normal activities. And I hope the same improvement for the nation under new leadership.

I think it is naive to overlook that there are still a lot of outstanding questions: how can we put this entirely to rest? Why did it happen? What exactly can we do to prevent it from happening again? What were the biggest mistakes, and if we were to do it again, what would we do differently? That being said, we are armed with new tools and evidence that I’m confident will reduce the impact of future incidents.

Like America’s, my journey is not done. My profound symptoms have subsided, but I still have lingering effects from the injury and 24 years of somewhat careless living. Primarily, my symptoms include fatigue, headaches and fogginess, and, as with most treatments I’ve had, symptoms get worse before better. My health is something that I will be proactive about forever, and I’m SO excited for the newfound power I have to take control of my own wellbeing. I mean really, I have done the whole thing with natural modalities and proper nutrition— that’s pretty dang cool!

Still some work to be done

I will not forget the lowest of the lows I’ve felt, the physical, emotional, and mental pain that I’ve suffered. But I wholeheartedly acknowledge the privilege I have to find and pay for the resources I need, to have had the time to devote solely to recovery, and the support system I have to get me back to myself. I am very lucky to have found treatment in a comparatively small amount of time. I hope to help others that continue to needlessly suffer. 

My first piece of advice for those dealing with PCS? Join Concussion Compass! The path that I share that has worked for me, is the path that they advise. And because every concussion is different, they guide you through all the possibilities. Be sure to check out my full timeline if you’re curious!

My advice for everyone? Take little steps every day to maintain your health. I strongly believe we need to be building our bodies to be more resilient than they are. Preparing our bodies so that if trauma does happen, it has the tools to react properly. Preventing disease by fueling with proper nutrients. Taking a more holistic approach to health and not being so complacent with symptoms that may seem ‘just normal and how things are.’ Our bodies send us signals when something needs attention and really can heal with assistance. *cough cough* This preventative logic works for global systems too. The pandemic has highlighted the importance of future-proofing for times when we need global cooperation and action.

May we take appropriate caution when needed and use all that we learned to make us better going forward! Use empathy and compassion to help us all heal.

Thank you to YOU for listening.

Thank you to my parents and siblings, my L, M, C, D, and other RY pals, my naturopath Dr. McCarthy, the team at Cornerstone Family Chiropractic, my therapist, the team at Professional Physical Therapy, Complete Concussions that helped me find the team at South Burlington Physical Therapy, the team at the Concussion Center of MA, the Concussion Compass community, Dr. Kelly at Active Recovery Boston, and Dr. Chiu, Dr. Hrkal, Moore Integrative and other professionals who share their knowledge online. And lastly, thank you to all others out there who have shared their PCS story publicly and made me feel the slightest bit sane.