Disclaimer: The following is a description of my recovery from a prolonged concussion. None of this should be read as medical recommendations, and I strongly urge anyone who has had a head impact or suspects a concussion to see a doctor specializing in concussions as soon as possible. I wanted to share this story, not to offer medical advice, but to shed light on an highly mercurial injury whose recommendations are changing very rapidly as it becomes better understood. Every concussion is unique, and only a professional knows how to distinguish between unpleasant but non-serious symptoms versus symptoms that may point to something much more serious that could lead to serious complications or permanent brain damage.
2017 was going to be the year that I’d try for CX Nationals. Fall 2016 would have been my fourth real CX season after two fairly strong ones as a cat 3, and I finally felt mentally ready to say that yes, I wanted to see how far I could go in this strange, wonderful sport I fell into, and yes, my life circumstances finally allowed me to structure my schedule to make this happen.
I didn’t make this decision lightly. Although I had a passably strong martial arts background, I had been a very mediocre XC runner in high school, and it was to my great surprise one day that I was somehow able to win a bike race. I was very comfortable with being a “mediocre” athlete, but it was also empowering to believe that a part of my identity I thought was unchangeable, I actually could change. It was another sea change to begin to wonder and possibly believe that perhaps I could be part of an elite group of athletes, that even if I was far from being a contender of National Champion, that I would at least be a part of “the best” at something athletic.
As one does when reaching for lofty goals, I found a coach to build accountability. After years of luddite resistance, I purchased a power meter and garmin, learned to use them, and altered my decade of ingrained ride routine to include data downloads (the horror). I didn’t skip any workouts, but between my full-time job as an architect and my part-time job as an adjunct professor of architecture, it meant I frequently got very little sleep. I wasn’t too worried though, as when school let out, I’d have more time to recover and build before the fall CX season. I kept dreaming.
The Quietest Punch to the Face
On June 2, 2016, I was finishing up an evening workout, and I was on my way to Belmont to hang out with the mtb racers that gather there. As a CX racer, some dirt path on a road bike hasn’t phased me in years, so I turned on to a stretch of path worn into the grass between the bike path and the road to cross it /
/ a sickening crunching sensation /
/it happened so fast and so quietly. I pulled myself up dazedly from the dirt path where I was laying in all of a sudden, and to my horror my front tooth remained pushed into my mouth, and there was a stick firmly wedged in between my front tire and fork. Piecing it together, I had endo’d over my front wheel and my tooth and face had taken the impact of the fall. Through rising panic, I messaged several different people, and the Philly bike community sprang into action to help me out: Laser Cat Elisabeth and Sarah LoGiudice came from the mtb race to roll my road bike away somewhere safe, while another mtb-er, Kris Molendyke drove me to the ER.
Falling through the Sieve / When the Medical System Fails you
Things that went well at the ER: there was an oral maxillofacial (OMFS) surgeon on hand, and they were able to set my tooth that very night with a wire, and thus began a month of hearkening back to middle school looks (greeeat …).
Things that were missed: The ER Doctor did not look very worried when it became clear that I was conscious, moving about, moving all digits and head on my neck, and not bleeding visibly anywhere. Diagnosis of tooth intrusion aside, I might have a bit of a headache for a few days, but Ibuprofen should be fine for that, was the medical opinion rendered. The doctor then left, and I wandered out in the hallway wondering if I should ask about concussions, being only vaguely aware that there was something related to head impacts that I should know, but the Doctor appeared to be busy with other tasks, and I lost my nerve asking about something that clearly wasn’t a high concern.
/ what if I had asked? / would it have made a difference? / such torment, these questions /
I now know that I may have done everything precisely incorrectly following my concussion: riding a bike out to a concert, cooking a large meal for friends and getting little sleep, riding on a trainer for 2.5 hours (even if it was easy pace). I felt a little off, but generally not too weird for about a week and a half, when I felt really abnormally fatigued and sleepy while at work. “You’re probably just not getting enough sleep,” were some opinions, but honestly, I was getting plenty of sleep. I even went to see a primary care physician, but even this doctor did not seem terribly worried. This doctor thought, similar to the ER doctor, that I’d maybe continue to have headaches for a few days but that things would dramatically improve over the weekend.
The First Good Advice
So I went to the beach. And my head kept feeling off. And weird. I didn’t yet have the vocabulary or familiarity with the symptoms I’ve come to know so well, which I’ve come to describe as a foggy sensation at times, or at times that my brain is bloated and just too big for my skull cavity. A tension ring slowly tightening around my skull – that became the hallmark concussion headache I’d come to know so well …
/ like slow torture / medieval torture device / ever-tightening /
The strange sensation stayed all weekend with no improvement, when Laser Cat Taryn suggested that I chat with her aunt, Karin Shay, who had had a very serious concussion and now researched them.
With increasing anxiety, I was able to have a phone chat with Karin when we got back from the beach. I described my symptoms to her, and she actually listened to me and told me that from her research and experience, it sounded very much like I had a concussion without any signs pointing to something really serious (such as brain bleeding). She gave me some recommendations, such as asking work to either give me some days off entirely, or at least to shorten my work day to 6 hours a day for a little while to give my brain a chance to reset. No screens, dark rooms, because eye movement tired the brain out, and definitely to please try to see a neurologist as soon as I could. She told me to call if I needed to. Her empathy and sympathy were like a rope being offered as I clung precariously to a sheer face of rock.
Help At Last
Fortunately, I was able to see a concussion specialist doctor relatively quickly. My doctor has a specialty in Physical Medicine and Rehabilitation (PM&R) with a sub-specialty in Brain Injury Medicine (link to info on PM&R specialty here). (I learned later from a neurologist friend that even neurologists don’t necessarily get all that much experience with concussions because it’s outpatient, so less patient time in the hospital). I described the crash, the following week of activities, the onset of the strange fatigue, and to the best of my abilities the types of headaches I had been having. My PM&R doctor asked if I was having any issues with sight or balance, and I wasn’t. According to the symptoms, I did not need a CAT scan or MRI.
The recommendations by my doctor were much more nuanced than those offered by Karin: Since I wasn’t experiencing serious photosensitivity, I could maybe try going to a quiet restaurant or cafe with friends to stay social, rather than staying home alone in a dark room. It was important not to socially isolate myself if possible. I should limit computer use but could continue once the symptoms subsided. I could also try light exercise, as in walking, but nothing where I’d get the heart rate too high. I should know that I will be recover, probably fully, but my doctor was very honest with me: there was a chance that there would be complications, and also brains are highly complex and not very well understood. Straight from a concussion specialist doctor, folks.
The Agonizing Death Throes of Dreams
And so began the longest, loneliest, coldest summer. I came to know all of my triggers intimately, like cantankerous, demanding, unwelcome, mooching family members that just won’t leave you alone. Anything that increased blood flow to my brain would set off a tension headache: heat, exercise, alcohol. Anything that caused increased eye motion – TV was out, sometimes even books. And oddly, and somewhat unusually in my case, diffuse loud sounds (like loud restaurants or concerts) would set off a headache. Sleeping felt good, so I’d sleep away a weekend, only to find myself awake for hours of insomnia and wonder if I was becoming psychologically unhinged.
The dream lived on through July though. I baked. I made some damn fine pain au chocolat one day (I don’t recommend ravioli if you don’t have a pasta roller. It was surprisingly physically challenging compared to laminating dough. Yes, I got a headache from making pasta.) I refrigerated myself at home and found some great podcasts. Maybe I could catch up on workouts through August and September – cross season is long. It’s OK. It’s OK/
/ the first tear rolled down. then another. then another. /
/ I was driving out to help with the Annual Women’s CX Clinic, and thinking about seeing all of my healthy, strong, beautiful, friends with their whole CX seasons ahead of them, and the dream came crashing down in loud, anguished sobs. The dream was dying. CX Nationals would not happen this year – I knew, deep down in my gut this was true, that there just wasn’t enough time to build, build, build the body I needed, the snap, the adrenaline, the burning legs and lungs that could burn even more, longer, until it crossed the finish line the final time. I dropped off the things they needed and got some sympathetic hugs, and tried to explain incoherently as a toddler unable to communicate anything verbal, but only raw emotions. I drove home, sobbing.
8 Months of Purgatory
There was more sobbing on my future husband’s sympathetic shoulder. My good weeks would lead to soaring hopes and expectations of returning to riding again, only to have the hopes dashed as more tension headaches ensued. The delayed reaction to potential triggers coupled with the repeated disappointment of realizing the concussion would continue yet another month, and another month relentlessly plagued me.
The analytical, rational side of me knew that I was processing a disappointment that I had not suffered previously. I knew I was physiologically not as happy because I was unable to produce my usual quantity of endorphins. I was socially isolated, usually safely refrigerated indoors to avoid the heat in the summer, or unable to stay at social functions long because of the sound. I was mourning the death of my dream. And I’ve heard that “mourning” of a loss like this is a real thing: people don’t just mourn death. I knew I would get through it all, but the cycle of hope and disappointment was unceasing, and on top of that, it was hard to explain exactly what I was going through to most folks who saw a mostly healthy-looking individual who mostly seemed to have a sour attitude about an injury. I frequently thought about friends with chronic illnesses who have to explain themselves the way I had to, but they would keep having to, and I felt a new sense of respect for them.
Perhaps the most frustrating interactions I kept encountering over and over were well-meaning people who thought they knew enough of my situation to give me advice, to tell me it’s going to be alright, just be positive! I find the pressure to plaster on a false happy front to be maddening, and definitely biased towards women who are expected to provide emotional support. Hide from the world that I am suffering, hide that I need support this time. The fact of the matter is, real people have emotions, and emotions are variable. Why must we be so afraid of people showing pain? Conversely, perhaps the most heart-warming interactions were from folks who said in many ways: hey. I know you’re going through some terrible times, and I’m really sad that you are, but you’re my friend, and I’m here for you. Friends who checked in on me, noticing my absence. Friend who understood that pain is real thing that occurs, that it’s OK, that it’s a part of life.
Freedom came just as quietly
There were other complicating factors to knowing when my concussion was over. One was allergies, as I grew up with little to none, but developed seasonal allergies later in life. Was it a concussion headache, or an allergy headache? December and January heralded sinus infections. Was it a concussion headache or a sinus infection? I may have had a light case of the flu, and needed to take ibuprofen for fever. Was it a concussion headache, or a post-Ibuprofen headache? Not knowing was so frustrating.
On one of the freak warm days in February, I took a ride out, like everyone else in the city it seemed, so I decided to take a different route home than the river trail which was clogged with humanity. This different route required quite a difficult ascent. My hill-climbing muscles gone, I was huffing and puffing, probably as hard as some of the harder intervals I’ve tried. I was huffing and puffing, my lungs were burning, my legs were burning /
/ such foreign familiar sensations / how I’ve missed this /
/ but my head remained still. No headache.
Epilogue: Questions and Thanks
I’ve been meaning to write this blog entry for a long time, but I haven’t been ready to, and it’s been very difficult revisiting the emotions and memories of the past few months. I pushed to do so because I received a lot of bad information early on, that perhaps may have exacerbated and elongated my recovery, and I don’t wish those past 8 months upon any decent human. I really hope that this story has thrown some light onto how awful concussions can really be. I hope access to better information occurs, both amongst the general population as well as the medical profession.
Many people have told me that it isn’t necessarily the ER doctor’s “fault” for not mentioning concussions, since their job is to literally save people from death – for example, sewing up someone with five gunshot wounds. I get it. There are so many concerns when it comes to the human body, that it doesn’t necessarily make sense to address every single one of them.
The question plagues me though: would I have been better off had I been given a brief explanation of potential concussion symptoms to look out for, as well as steps I could have taken to reduce my activities to help recovery? Would it be worth it for ERs to invest in a small program that develops maybe one 8.5 x 11 sheet of paper’s worth of information that perhaps most people would not read, but at least some fraction of the population would, and perhaps help better inform people with head injuries? I’m very fortunate that I had enough well-informed people around me that I sought medical help, but that is likely not the case for many, many people of the general population.
I also want to thank Karin Shay for helping me, a complete stranger, out in some of my darkest hours. Thank you to my PM&R doctor for sharing professional knowledge and getting me back on my feet without losing myself to depression. Thank you to my friends who shared their concussion stories and experiences with me, and checked in on me every few months or so (not sharing their names for privacy). Thank you Theron for letting me cry on your shoulder more than once throughout the recovery.
Update: a friend pointed me to a very similar concussion recovery story on Ella Cycling Tips by Simone Giuliani. I related very hard to many of her description of how she felt during her recovery. Here is a link to her story.