On nearly losing one’s mind — Cycling and TBI

This blog post was initially published July 4, 2012, on my old website, steelcitychick.com, which I kept up while I lived in Pittsburgh, and is no longer in existence. But because it was on the internet I could find it and have transferred it here to my Medium site. This was a blog in 2012 that was something I shared about having suffered a concussion, so that other cyclists or people who may suffer a head injury, might learn about the importance of getting good care.

It’s over 8 years later, and I don’t have any residual symptoms. Those resolved about one year after the initial concussion, although it took me a few years, and a Race Across America and even moving to a new city to 100% put what happened behind me. But I think going through something like this, being vulnerable as a patient (and especially as it affects one’s mind) is something that I hope makes me a more empathetic person and physician.

So without further commentary, here is the original post from July 4, 2012:

On April 7, I was in a bike accident. A little less than a week later I nearly lost my mind. The last few months I have learned a lot first hand about traumatic brain injury, and this is my story. While this is a topic that has garnered a lot of attention in the media, it is still something that has not completely penetrated our cycling community. I hope that by sharing my story I can begin to change that and help increase awareness in my beloved cycling community.

When I’m not doing my regular job I ride bikes. Actually I race bikes — road, mountain, even sometimes wearing that space outfit (what I used to think it looked like, heck what I still think it looks like) in the event called time trial. If you had asked me 4 months ago what my most important piece of bike equipment was, I would have told you something totally “roadie-tastic” like my Powertap (which measures and records the wattage that comes from each pedal stroke) or something nerdy like that. But in the matter of less than 5 seconds on a beautiful Saturday in April, it became my helmet. Here is my story.

The race

In early 2012, I was feeling strong and much more confident than I had ever felt on the bicycle. I had been training since November, targeting an early race called Tour of the Battenkill, a famous American classic race in New York. All my workouts, my early peak, was set up to race well there. Doing the workouts from my coach, and actually lighter than previous years, the power-to-weight ratio seemed to be working in my favor. I raced Battenkill in 2011, and did reasonably well, but felt I had some unfinished business, and so this year would be different. This year I would be prepared. As a buildup to the race I had a string of 3 races, and in the first 2 — the ABRA training crit and Jefferson Cup in Charlottesville, NC — I felt strong and confident racing in a large field of fast women. A week before my target race, I was psyched for Morgantown, a 50-mile road race, with a more comparable distance and climbing to Battenkill (62 miles) and a field of strong and fast women. It would be the perfect final tuneup the week before the race.

When the race started, I honestly felt great. A little too casual (usually I get those excited pre-race jitters), but likely because I was racing with friends, and really happy to see people again after a long winter. The 20 miles of the race was relatively flat, but I knew the climbs were coming and soon the fast women in the pack would attack, and it would blow apart. Sure enough it happened. And on that climb a super fast and brave woman from Syn-Fit took off in a solo breakaway, leaving a group of about 7 of us to lay chase after the climb. It took us probably a little too long to organize ourselves to work together and catch her, but we did, and started taking turns in the pace line to catch the leader.

This was one of the fastest chase groups I had ever ridden in, and it was fun. With each climb, we would try to tear each other’s legs off, and I was happy to just stay with them. At times I was dangling on the back of the small group for dear life, at least until the last climb approximately 10 miles from the finish. At that point Nicole and Betsy made an attack on a mini hill just after the big climb, and Swan and this other woman I did not know took off after them. That’s where the first real gap opened between them and now just Tracy and me. I was determined to catch back up with them, and actually thought I would catch them on the descents. I told myself I had been descending confidently, like a demon, and I would just redline until I caught them again. I pulled ahead of Tracy, signaling that we should get them, and we took off.

It was on the last descent, only about 7 miles from the finish, that I did not see the hairpin turn to the left. In my mind saw a sweeping turn coming (and this was kind of complete fabrication, because there are not too many of those on those West Virginia roads — it is part of what makes them beautiful and fun to race). By the time I hit that turn, I realized it was too late. I tried to corner it, but at 36 miles an hour, turning almost 180 degrees on a narrow road is nearly impossible for anyone. Just like when you brake too late driving a car fast into a turn, the same thing happens on a bicycle.

My bike started sliding out to the right, as the brakes locked up, and I fell onto my left side. I remember everything. From that instant realization before the crash, to the sudden pain all along my left side and even hitting the side of my head on the road. As I lay there making all sorts of guttural noises, the follow car pulled up behind me and luckily my team coach Suzanne — an emergency medicine physician — and another volunteer jumped out and got to my side. She checked me out, and we determined nothing was broken. A fair bit of road rash, but nothing broken. I did not have a headache. I did not lose consciousness. I did not have amnesia. And the bike was okay. Once the shock of the fall abated and the adrenaline kicked in, I decided to ride and finish the race. Although the women I was chasing had no doubt finished by now, well, finishing the race is just what you do.

I crossed the finish line and felt at least a little triumphant and a LOT fortunate to be able to finish that race. And then a lot that happened is a big blur. What I do remember is being totally dazed as I looked to see where first aid stuff was, to find my teammate Stacie, who somehow had all this stuff to help clean and cover the road rash. Many people checked on me, and my friend Kate called me on the phone to check on me. I was okay, although “shocky” from the accident. Luckily I had ridden down with Swan, so I didn’t have to drive home. And of course I was convinced I didn’t need to go to the ER. Heck, I finished the race, dammit. As we drove home, I had this sensation that something was in my left shorts pocket. Putting my hand in my pocket, it was hard to fit it all the way in — this was how I first shook hands with Matilda, the name we gave to a huge subcutaneous hematoma (bruise) on my left thigh. It looked like a space alien trying to bust out my side, and well, you had to just laugh. That night Swan and Stacie came over and we had dinner and all hung out and watched TV. Maybe we saw a movie. I honestly can’t remember that part now. I do know that we talked a bunch about bike racing and laughed a lot more. It was only that night after they left that I found my helmet and saw that it had cracked in 4 places on the left side. I was thankful to have that helmet, and thought nothing more of it.

Post-race week

There is a reason the expression is “Doctor, heal thyself” and not “Doctor, diagnose thyself.” It is pretty challenging to make your own diagnosis, especially (in my own defense) if it is something that involves the brain, and especially if you are prone to minimize, rationalize, and try to just will something away.

The night after the accident, I had a brief moment where I had this warm feeling and my vision started to tunnel and had to sit down. Having never passed out before, this was as close as I came (the medical term is pre-syncope). I had a logical explanation for it though, attributing this to the huge hematoma in my thigh. In my mind I estimated that there might be a unit of blood in there, and it was tracking down fascial planes so probably more) so I figured I was probably relatively anemic and dehydrated. I went to work on Monday, and although the shoulder hurt a ton, I was the procedure attending and used it — likely increasing my mobility — at work. I felt exhausted at work, and after my morning procedures had a tough time concentrating in my office, all due to — I thought — not having slept from pain on my left side the previous 2 nights. I also scheduled an appointment at Sports Medicine to get the shoulder looked at, because maybe just maybe something was not quite right.

As for biking, while I had taken the day off on Sunday, I spun lightly on Monday (but had to stop because I had NO gas in the tank). Tuesday would be the first ride back outside.

I rode over the Highland Park Bridge to meet my teamie, Anne-Marie, for a ride through Fox Chapel. With its nice hills, some good climbs and descents — this would be the first test of the legs and shoulder post race . It was a beautiful day, and I was riding with my teammate, so I should have been happy to be back out there. However, it is no exaggeration to say this was the worst I had ever felt on my bike. I literally had no power in my legs, was winded and hyperventilating on climbs, became increasingly anxious throughout the ride, and had to cut it short at about 25 miles or so. When I got home, I was a wreck. I was super anxious about how poorly I had ridden, worried about the race ahead, and started to think maybe it was the hematoma. Maybe I was more anemic than I’d thought.

The following day I saw Dr. Rodosky at Sports Medicine, and learned that I had a type 2 shoulder separation of the acromioclavicular joint. The good news was I could ride my road bike, as this actually reduced (medical speak for putting it back into place) the joint. I also had my hemoglobin (blood level) checked, and it was only slightly decreased (about a unit down), so I thought this may have explained in part my lack of power on Tuesday. The bad news was I was out for mountain biking and, given its gravel and rough roads, Battenkill. I called my teammates and told them, and they knew this was a huge let down for me. I kept telling myself I was lucky. It could have been worse, and I won’t lie, it was a disappointment.

The rest of the week I worked, and as the week went on I continued to have a hard time concentrating. Although the musculoskeleletal pain had improved, and I was sleeping a little better, I still felt exhausted, having what felt like caffeine headaches despite imbibing my usual daily dosage. It was Friday when it all really hit me though. As I drove to work I actually started getting upset, and when I showed up in the morning, the nurses found me with tears in my eyes. I don’t often cry in public, and certainly don’t cry publicly at work. But everyone attributed this to a stressful week, poor sleep, and such. I pulled myself together, focused and did my work that morning, and then again literally could not complete an email or my clinic notes from the previous day’s clinic.

When I went home on Friday I honestly felt like I was losing my mind. It had been a challenging week, but now I was a complete basket case. I really thought I was losing my mind. I had never felt anxiety like this before, and no doubt there were a lot of mixed emotions at that time — First, I felt so stupid for having an accident pursuing my hobby, and did not want people at work — or my folks — to know. I just wanted to get better and get back to work, proving to everyone and most of all myself that it was not such a big deal. Second, I was disappointed in not going to the bike race, but my emotions were definitely out of proportion to that. It was not like someone died, or something more profound. At the end of the day not something for which I would normally cry. Third, I could not mentally get one task (even an email) done, much less carry multiple complex tasks in my brain (which is something I usually can do fairly well — it’s part of my job, who I am and what I do). On Saturday, I called my friend Kate, and told her everything in detail that happened. I had been minimizing all that had happened, and purposely didn’t want to talk about it to anyone who hadn’t been there, but now it was getting worse. She knew something was really wrong, and at the end of the conversation she told me she was coming over and stayed the night. What I remember about that night was watching Rocky IV. Yep, you know you have a good friend when they’ll sit through that movie with you. On Sunday we saw the Hunger Games, then met up with Stacie for dinner, and had a wonderful day just hanging out.

Truly thankful for the best friends anyone could ask for

Although it had been a wonderful day, when I got home I found myself depressed again, and it was at this moment that I started wondering if it was possible to have had a concussion even if I didn’t have a headache, amnesia, or lose consciousness. I texted Suzanne and asked her if it was possible to have a concussion without headache, loss of consciousness or amnesia. She answered “YES!” and recommended I go to the concussion clinic. In my state I debated this back and forth, not wanting to make more of it that it was, and kept asking Suzanne, and then Stacie and Misana, and they definitely agreed. Might as well get checked out, they said. On Sunday I also received an email asking for help taking care of the inpatient service for a colleague who had a death in the family. I had almost instantly answered “yes,” but by Sunday evening I realized I would have to get my head checked before I saw patients.

Concussion clinic

Fortunately I heeded Suzanne’s advice, and when I called first thing on Monday morning, Dr. Michael Collins had a spot open in his Concussion Clinic. I told my work colleagues that I had to get checked out before I saw patients, still thinking I’d be back by noon. The first thing his nurse had me do was take the ImPACT test. This is a neurocognitive test well-known to high school kids and their parents (kids in Pittsburgh schools take this test as a baseline before competing in sports). It tests several mental functions, from verbal and spatial memory to reaction time to processing speed, and gives you a score. They also assess your symptoms prior to and after taking the test. These symptoms include headache, nausea, lightheadedness, dizziness, anxiety, sadness, sleeping to much/little, and sensitivity to light and noise. Then they ask your symptoms after the test. When I told the nurse how I felt (and that the room seemed a bit more uncomfortably bright), she told me that the test brings that out.

Dr. Collins walked in, heard my story and symptoms from the past week, reviewed my test results and did a neurologic exam. The focus of this exam tested my VOR — vestibulo-ocular reflex (tests such as turning your head side-to-side while keeping your gaze on an object or looking from one side to the other). And with this exam, the symptoms became more pronounced — fogginess, lightheadedness. On my test I scored, well let’s just say it was very low, especially for someone that is supposed to take care of people and process data in research.

Dr. Collins told me there are many types of concussions, and diagnosed me with a vestibular concussion/mild traumatic brain injury (TBI). He also said that what I needed to do was stay home from work, lay off the computer, stay out of busy places like the Giant Eagle, and rest my brain for 10 days. I was stunned, and kind of denied this right to him, saying I didn’t have a headache. But all the other symptoms — the lightheadedness, pre-syncope, anxiety, decreased ability to concentrate, fogginess (feeling kind of like you are outside yourself) — all these were consequences of the injury. It turns out that the vestibular system in your brain is quite complicated. It includes the inner ear (peripheral vestibular system) and nerve pathways and vestibular nuclei (centers) within the brain and brainstem. It is responsible for one’s balance, and also the complex processing of visual images. For instance, when you look at an object but turn your head side-to-side, it is your vestibular system that keeps that object still and prevents retinal slip. Dr. Collins also explained that the vestibular system is responsible for helping your brain when you focus on something in a busy environment tune out all the other stimuli that are not as important. And it is also hooked into the emotional centers of the brain. When this system is injured, it means that working in a stimulating environment such as the hospital, descending on your bike in Fox Chapel, or even walking through aisles of the Giant Eagle, will make your vestibular system have to work extra hard, and this often elicits anxiety or emotional response from the stress on the brain. This was finally a logical explanation for what I had thought was completely illogical emotions.

So the previous week now made a lot more sense. I was not going crazy, he reassured me. And I told him that really was how it felt. Fortunately, he said, I came to the concussion clinic when I did, because if I did what he prescribed, this would all go away. If I tried to “just fight through it,” things could “have gotten really bad.” I’m not sure exactly what this meant, but given how I was feeling, I believed him. I was completely worried about this lack of ability to carry out complex thinking processes in my brain. I am sure it is the case for anyone, but in my job, in my life where I often bite off more than I can chew (but at least never go hungry), this was devastating to me.

I went to my office to try to clear through outstanding clinical duties/emails (300+ in the inbox), and tell my colleagues I could not see patients. I talked to my research mentors, who when they saw my face and pallor seemed to understand more than I did at the time, and then went home and began 10 days of brain rest. Immediately after that clinic appointment, when I told my friends Kate and Stacie, I found out about 30 minutes later that they had devised a schedule of who was coming over when for dinner and company in the evening. Words cannot truly express my gratitude for my friends during this time. They came over regularly and either cooked or brought dinner to my house, and just hung out. They also listened to me when I felt crazy, reassured me multiple times that I’d get back my old feeling of “being able to conquer the world” again someday, went with me to follow up doctor’s appointments, and were just there the entire time. Never had I felt so vulnerable, yet so thankful to have friends like these.

Healing post-TBI is an active process

What is brain rest? And what do you do if you are usually working on the computer and you cannot? Brain rest in my case was staying home, not exercising so that blood flow gets to the injured part of your brain, sleeping regularly (not too much, and not too little) with regular hours, and not looking at the computer or TV screen. So what do you do? AUDIOBOOKS. I listened to the complete Hunger Games series (highly recommended), and then a bit of fun revisionist fiction in Abraham Lincoln, Vampire Hunter.

Once on brain rest, I found that my “caffeine headaches” went away. So in reality these probably had not been caffeine-related at all (especially since I did not alter my consumption). I also found that the anxiety started to get better.

In addition, I soon started physical therapy for my vestibular system, and saw Anne Mucha in the Eye and Ear Institute. Just like rehabilitating a muscle after an injury, it would become important to retrain the brain to process complex information and tasks like it should. “Pencil pushups” and beads on a string, working on visual accommodation (being able to focus on an object as it gets nearer to your face), gaze exercises, and walking in Frick Park were all part of her prescription. As the weeks went on we added more complex tasks, utilizing busier backgrounds, or purposely going to the supermarket.

At my 10-day follow up appointment, I was a bit shocked to find out I would still be out of work, another 10 days, and now could work 2 hours a day on the computer (10 hours per week total) from home. I had thought this was like a week or 10 days out and then back to work, but it turns out the brain sometimes takes longer to heal. And they also knew that the likelihood of me going back to work and not going full speed was nil. So I continued at home, participated in conference calls, but mostly stuck to the computer limitations. When I didn’t I felt those headaches and lightheadedness again. (It was like Occam’s razor underscoring what had happened and that proper treatment was essential). As the weeks progressed I started rehabilitation and physical exercises with Cara and her student Nick at Sports Medicine. Back on a stationary bike, I was elated to get endorphins again (although I won’t lie, it was a challenge at first). Again gradual increases in exercises, and work devoted to core (apparently concussions are associated with weak core strength — guess I need more Suz Falvey and core ‘n more in my life!).

It took awhile to admit what happened more publicly, as I tend to minimize and rationalize this stuff, and most of all it took awhile to tell my parents. I chalk up a lot of the early decision not to tell them to my brain not working so well, as well as this overriding concern to not worry them or disrupt their lives, but as I continued to be off work and off the bike, I knew — even though I was getting better — that I had to tell them. (If, Heaven forbid, something happened to them, I would want them to tell me.) And I’m glad I did. It turns out a couple of weeks later I really needed my folks to come visit, and they did on two consecutive weekends, which may have been the critical last piece that finally helped in the healing. I am grateful that they never once told me something like “well, you’re not going to ride your bike again, are you,” which was a fear in my more irrational concussed state, and thankful that they somehow understood all that happened and did not make me feel even worse for not telling them sooner than I did.

The next few months I continued to follow up in clinic and do the rehab. And again I remain thankful for the patience and understanding of my work mentors and colleagues, who had to pick up some extra work in my absence. Huge victories came in the form of passing my test to be able to ride my bike outside on the trail or at North Park with my friends, giving a talk in Cincinnati to a patient support group, attending a lung conference in Aspen Colorado, and then being more active in the PHA Conference in Orlando, followed by a lung event at our hospital the following week. Although I still have to pace myself, and still feel some of the consequences (headaches, dizziness, increased anxiety, lack of filter) when I do a little too much, I can now carry on complex processes in my brain and get more things done. And — for the record — my ImPACT test scores are much improved — I won’t lie, I rocked it last time ;-) — and I’ve been given the official blessing to see and think about patients and patient-related issues again. Perhaps most importantly I have that feeling again at least on most days — that energy to conquer-the-world feeling, where you wake up and think, what am I going to do to improve the world around me today? I’d say I’m over 95% back now, and will be 100% very soon. Who knows, maybe I’ll be 110% when this is all done.

Lessons learned

Having been blessed with good health, and living mostly injury-free despite some meathead-esque athletic tendencies, this experience of being a patient was a first for me. When you race as a cyclist, you train yourself to push through pain, push through sore muscles, push through fatigue. If you push just a little harder, you’ll outlast your competitor, or you’ll break your own personal record. So that is what we do. Sometimes we sprint so hard we get physically nauseated after a race. It makes us different than most people who logically stop before they reach their lactate threshold or beyond. Although I’ve given the advice to “listen to your body” many times in talking to patients, I learned first hand that when you’re sick or injured, it is important to listen to one’s body, rather than always working through it.

I also learned in subsequent weeks how there is still a great need for more awareness about brain injury to our cycling community. I’ve heard people talk about others’ injuries and say “well, there’s no treatment for concussion,” and especially in our community we tend to just push through discomfort. Despite an active TBI-awareness campaign, and despite the attention it has had due to our beloved Sydney Crosby and high school athletes, I’ve heard of physicians sending someone home from the ER after hitting their head and cracking their helmet in a bike accident, saying they didn’t have a concussion because they did not have a headache or get knocked out. None of those happened to me, but I definitely had a concussion, and there are things one can and should do to actively promote healing. One of the most important things someone can do is stay off the bike until their symptoms have improved and they have been given the okay, because re-injury, a second concussion before the brain has truly healed, known as “Second Impact Syndrome” can be extremely serious and even fatal.

On a lighter side, I also learned that — despite my hoping — getting knocked in the head did not suddenly endow me with a sense of direction for driving in and around Pittsburgh. (Ask my teammates, and you’ll hear stories of getting lost on the way to rides and races, more numerous than I’d care to admit.)

In the words of my mentor, “sometimes it takes a bang on the noggin to remember that small increments, friends, and sleep are good things.”

After reflection, I am thankful for this experience and for many things in the past few months, including:

1. My helmet.
2. The love of my family and my friends who truly are family to me.
3. UPMC Concussion Clinic, one of the leading centers in the country, and Suzanne who sent me there.
4. The understanding of clinical and research mentors (who seemed to understand, especially early on, better than I did).
5. Working for an employer that provides health insurance and not only allows compensated time off, but encourages full recovery before resuming full duties.
6. Gluten-free pancakes at the Square Cafe.
7. Last but not least being a member of an amazing and vibrant cycling community in Pittsburgh.

For more information on concussion, check out the Centers for Disease control resources here.

For more information on the ImPACT test, developed at the University of Pittsburgh, check out this site.

For more information on the UPMC Sports Medicine Concussion Clinic, check out their website here.