With the release of the movie ‘Concussion,’ I thought now would be a good time to revisit my own hellish experience with post-concussion symptoms. The story below was originally posted in March of 2013. I encourage you to visit the comments on the original post if you or a loved one are suffering from this. In those comments, you will find you are not alone.
As for me: In the years since I shared my story, my own symptoms have not disappeared, but they are not as bad as they used to be. I still get way more migraines than I did before, and when I get them they are also more severe. Additionally, I feel tired more easily, although that could be attributed to simply not being in my early 20s anymore. And the fear I described in Part X below still follows me everywhere. Anyway, read on, and feel free to email me if you need someone to talk to.
Part I: “What the hell is happening to me?
The start of the whole mess didn’t feel like the start of anything of any significance. Before a family dinner at my brother’s house, I felt kind of woozy and went to the guest room to lie down for a bit. It didn’t help, and in fact that woozy feeling stayed with me for well over a year. If you’ve ever fainted before, you might know that twilighty feeling, where you’re aware that you’re about to black out, but you’re somehow too detached from consciousness to do anything about it. Starting that day in February 2011, I felt like that all the time.
That night my dad took me to an urgent care clinic. I did a bunch of balance tests and was somewhat reassured by the doctor’s pronouncement that I had not suffered a stroke. I repeated those balance tests obsessively at home, standing on one foot on a pillow for as long as I could to make sure I could still do it.
The woozy feeling was worse when I moved too suddenly, or sang too much, or walked too fast. Much worse, though, was the fact that my memory started getting slippery. If I tried to read a textbook or a blog post or the minutes from a meeting, I could recognize the individual words but failed to retain any meaning or message from them. The names of people I knew and saw every day were suddenly a mystery to me. I found myself doing that really sad “Hey….you! What’s up….pal?” thing that I imagine people in the early stages of Alzheimer’s do. Except, this was happening to me at age 22, not 82, and I had no idea why.
And then there were the migraines. I had about three of them per week, plus a constant dull ache in the back of my head. Looking back later, I realized that headache, and the increased migraines, plus a constant ringing in my ears, had actually started earlier. But I’m getting ahead of myself.
Other things that happened included numbness in my hands and feet, which got pretty severe. It felt like my body forgot that it had feet underneath it, so when I walked I would be surprised every time my forward progress was halted by these shoe-wearing things that kept landing on the pavement underneath my ankles. And all the time, I was just…so….tired.
Part II: 14 Hours of Sleep Per Day
It’s hard to be a college senior with classes, a job, a blog, and friends when your body thinks it needs 14 hours of sleep every day. I would get up and go to classes, if only to attain attendance points. I couldn’t remember anything from the lectures and I didn’t have the energy to keep up with taking notes. Recording lectures was a nice idea, but when would I listen to them again? I was sleeping all the time when I wasn’t physically in a classroom.
I was a pretty terrible friend in those days. I still hadn’t quite figured out what was wrong with me, which made it ever harder to explain why I couldn’t hang out, or go to this concert or that ballgame or whatever. And my friends were not the only people with whom I struggled to communicate…
Part III: Explaining Without the Right Words
Before I put together what was happening to me, I had to figure out how much to say to which people about my situation. I made the decision early on that I wouldn’t bother trying to explain my situation to “single-serving friends” and passing acquaintances. With them, I would just try to pass as a normal person, even though I was far from being the actual Minda.
Teachers were another matter. They needed to know something about why I looked half-asleep during classes, why my responses to class readings sucked, what I wanted them to do in the event that I passed out during class (call an ambulance, and my insurance card is in the front pocket of my backpack). “Some thing is wrong with me, but I don’t know what, but I need you to adjust everything for me” is what I felt like I was asking.
I wanted to let my friends and coworkers in on what was going on, but since I lacked the language to explain my constant fog and my sudden memory loss and my ridiculous sleep schedule, I mostly kept quiet. I understand why they couldn’t (and still can’t) get it: How could they imagine a brain that doesn’t work, when theirs are just fine? It was pretty lonely.
Part IV: Doctors not named Gregory House
I started going to doctors, because all I knew at this point was what the doctor at urgent care had told me: I did not suffer a stroke. After lots of visits to all manner of doctors, that was still all I knew. Everyone kept telling me I needed to see a neurologist, but I already had, and he was the most useless of the whole lot.
Lots of well-meaning people started weighing in with ideas that started to sound like the first half of any given episode of House, M.D. Suggestions from various places included mercury poisoning, a migraine disorder, pregnancy, protein deficiency, dehydration, low blood sugar, high blood sugar, low blood pressure, high blood pressure, thyroid problems, heart defects. The most maddening of these was “well, you’re just stressed.” No, I wasn’t, until my brain started (figuratively) leaking out of my ears for no reason, but thanks for being so condescending in my time of peril, people! Augh.
Part V: A-Ha! (not the band)
My mom did a lot of Googling for me when I was too sick to figure this stuff out on my own. She and I had curated a list of my symptoms and it was probably pretty ingrained in her mind as she shuffled through countless message boards and articles searching for some clue as to what the hell was wrong with her daughter. Young people don’t just lose their brain function for no reason, do they?
After a while, it clicked. Post-concussion. Sure enough, I’ve had concussions. How many of them? I don’t know. It really doesn’t matter. There’s not a magical number of concussions that a person can have before they’re affected. The number is “one too many.” But I had had a pretty bad one in a car accident, just a little while before the worst of my symptoms started. I was examined by an ambulance crew at the scene. They chalked my haziness up to shock and let me go. I went to the ER a bit later, and was dismissed right away. The staff there sure didn’t think anything would come of it, and didn’t prescribe any follow-up care.
I didn’t make the connection at first because the fog and the memory stuff came a few months after the concussion. But when I looked back, I realized that the headache in the back of my head, the one that was always there? It started long before the fog did — right after the accident. So did the more-frequent-than-usual migraines. I just noticed those more after I started tracking my other symptoms every day.
I took a list Mom had compiled of commonly reported post-concussion symptoms. I started highlighting the ones I had suffered, and almost all of the 20+ things on the list were highlighted. I saved that list into my phone, and started taking it with me to all my newest new doctors.
Part VI: More Doctors (and their bills)
The clueless shrugs that I had received from most doctors turned into worse experiences in Round Two of my quest to fix my brain before I gave in and blew it to bits with a gun.* I had to beg and plead to get any kind of relevant testing done. To my surprise and dismay, doctors didn’t want to do brain imaging even though my brain was pretty faulty and probably merited a look-see. One very rude staff compromised by doing an EKG for some reason, so at least I knew that my heart was in good working order.
*I don’t make that comment lightly. At a certain point, when your brain doesn’t work, you start to really question what the point of staying alive is. When people like Dave Duerson and Junior Seau died the way they did…I understood. It’s a marvel to me now that I didn’t meet the same end.
After that, I started getting rejected before I even made it into the door. More than once, I heard “I’m sorry, that sounds like it’s a little bit outside of this office’s specialty.” They didn’t sound too sorry, and I thought I would never find a doctor whose specialty was “brains that go haywire a little while after a concussion.”
I thought I found one, once. She was my last hope, as far as I was concerned. The guy who recommended her said she’d really listen, and get creative in trying to find me some help. Instead, she sent me to an ENT, who sent me to a hearing lab to get my hearing tested. (It’s excellent, but I already knew that.)
There were, of course, bills for all of these visits.
Part VII: “Good enough?” Giving Up.
Since my “last hope” doctor didn’t provide me any help, I was ready to give up my search and move away from Omaha, back to my parents’ house. If my health didn’t improve, there was no way I could function enough to live independently, and I couldn’t live with my brother forever.
I could only work a few hours per day at my job that was supposed to be full-time, and every day when I had to go home early, I felt like a huge failure. But I was exhausted, all the time. I started my workday exhausted because it took all my energy just to navigate the roads to my office. My brain was no longer equipped to keep track of 4 lanes of traffic or watch my own speed or remember which lane to get into for which exit. The daily commute for most people is pretty much muscle memory. For me, since I had no memory, I had to consciously make every single decision in my car, and remind my hands to keep a grip on the steering wheel. If I didn’t do that, they’d slip down into my lap and I would have no recollection of how they got there.
[Note: Writing this has been exhausting and painfully sad. I sometimes forget how bad things really got, and revisiting the worst of it has left me in tears. If you’ve read this far, thank you for sticking with me.]
I still had to sleep all the time and my friends still never saw me. And when I did go out, it was only ever for a few minutes and then I’d have to go back home and sleep some more. This was all very depressing.
Part IX: Washington, Washing-ton. Or not!
A year ago last week, my parents happened to find a left-behind copy of some magazine in an empty pew at church. For some reason, they decided to actually read it rather than just leaving it back in the pew. And somehow, my mom saw an article about a woman in the DC area whose daughter’s life was ruined just like mine. But then she got it back.
The treatment was called LENS, and it helped give life back to the daughter of this lady, Patty. My mom emailed Patty that night wondering if the treatment that helped her daughter could help me. Patty said yes, she thought it might, and we could stay at her house for free for as long as we needed while I was undergoing treatment. Because that’s what total strangers do all the time, right? Apparently Patty was so grateful for her daughter’s treatment that she would do whatever it took to help other families concussions were trying to ruin.
Just like that – after I had given up all hope that I would ever be ME again – we had an appointment and the beginnings of a treatment plan. I made arrangements to work remotely and tearfully told my coworkers how much I’d miss them. I was going to have to miss most of the Storm Chasers season, which was really a pity since I had a press pass and all, but it was a trade-in I was ready to make. Plus I’d get to go to Nationals games between treatments! Having some measure of hope was exciting, yet terrifying. Hope is actually one of the scariest things when you’re in a murky medical situation.
The night before I was to buy plane tickets for my mom and I to head to DC, the doctor in DC called my parents with some startling news: She heard there was a doctor much closer to me who was doing a very similar type of treatment. How much closer? Two and a half miles from my house.
As crazy as it sounds, I didn’t want to try the Omaha doctor, because I had so attached myself to the idea (and the published research and the accolades from everywhere) of this DC-area one. But Mom and I struck a deal: If I agreed to at least try the one close to home, she’d use the money we were saving to take me to the U.S. Figure Skating Championships in Omaha.
So I went. And the treatment worked! In short, LENS treatment manipulates the electrical currents in the parts of my brain that were malfunctioning, so the currents were more even throughout the brain. Without these electrical “dead spots,” my memory started coming back to me and I finally had enough energy to just be a person in her 20s instead of a sack of dirt that could never drag itself out of bed.
Part X: Better for now..but then what?
I’m enjoying being better, and giving the finger to the broken brain that is now in the past. I can read books again, and do math problems in my head, and think critically, and go out with my friends, and drive my car, and walk around knowing that there are feet attached to the rest of me. I can like myself and see purpose in my life again. And yes, Mom and I went to figure skating, and dammit, it was amazing.
But there’s still a little cloud following me around: What if it comes back? When I struggled to think of an actor’s name the other day, was it just a brain fart or am I on my way to being broken again? What happens when life gives me another concussion?
I know that “what if” thinking isn’t terribly productive but after everything I’ve been though, I am watching like a hawk for any sign that the nightmare is returning to me. I think that little cloud’s going to stick with me a while, but I’m alive – no: Alive, with a capital A – and that’s more than I thought was going to be possible back when I was in the fog.
One last thing, because this is a sports blog: Sometimes I hear people talk about how they don’t get what all the fuss is with athletes and concussions. They’re tired of all the news stories, and can’t be bothered with talk of CTE. Or they’ll call Justin Morneau a pussy (their word, not mine) for missing so many games after “all he had was a concussion.” If there is one thing that anyone can take away from this post, let it be this: Don’t you dare EVER use the phrase “just a concussion” when describing an athlete’s injury. Hearing that is a dagger to my heart. Take it from me: there’s no such thing as “just” a concussion.