Sometimes on Twitter I make reference to my brain injury, but it occurs to me that I’ve never told the whole story. And until everyone – EVERYONE – takes concussions more seriously, people like me need to be more vocal. So here’s the story of how concussions broke me, but also how I got to the point where I could triumphantly tweet this:
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.
Epilogue
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.
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20 comments
1 ping
Michelle
March 21, 2013 at 12:47 am (UTC 0) Link to this comment
I’m so sorry you had to go through this but so glad there is treatment now, I had no idea! Thanks for sharing!
caryn
March 21, 2013 at 3:07 am (UTC 0) Link to this comment
Thanks for sharing this, for the next mom up late trying to figure out what’s wrong with HER kid. And I’m glad you’re feeling better.
Minda Haas
March 26, 2013 at 1:55 am (UTC 0) Link to this comment
Thanks Caryn. That’s what I’m hoping will happen, especially for young sufferers.
Kenn MacAdam
March 21, 2013 at 3:25 am (UTC 0) Link to this comment
Wow, amazingly revelatory. Congratulations to you and your mom for your perseverance. Really looking forward to reading your posts about the Storm Chasers and the Royals this year. Praying your medical comeback is permanent.
Troy Lewis
March 21, 2013 at 12:51 pm (UTC 0) Link to this comment
i am going to give this to a young man(16) who is suffering post concussive symptoms. im elated you offer a possible solution! As of now< he and his father arent dealing with "no more football" well. i am 43, and a presumptive sufferer of CTE.
i,too, want to have a stern chat with people who dismiss severity of concussions. especially someone close who knows better. thank you for your eloquence and passion. it will help someone someday. hopefully a young man who will read your words today! i struggle with my ability to communicate daily< but i find it imperative to thank and encourage people such as yourself to keep on keepin' on. I get emotional here, but its with gratitude and pride for a person who is spreading the word and potentially saving lives and the quality of many more lives. thank you!
Minda Haas
March 26, 2013 at 1:59 am (UTC 0) Link to this comment
Troy,
Thank you for sharing with me, too. Have you shared this with that young man yet? What did he say? I understand that it’s hard for a teenager (or even someone in their 20s and 30s trying to get/keep a career going) to really understand the risks of not taking concussions seriously. You don’t know what can really happen to your brain until it’s too late and it’s already happening.
What is it like to face the likelihood of having CTE?
Shanna
March 21, 2013 at 1:47 pm (UTC 0) Link to this comment
This is amazing. Yesterday marked the one year anniversary of me getting a major concussion while snowboarding. Straight into a tree & a broken helmet. The recovery was fraught with vertigo, lethargy, anxiety and the fear that I would never be “me” again. Thankfully I found a great neurologist who was able to help me greatly. Now, as I train for my half-marathon (I had to walk it with my mother at my side last year) I talk a lot more about concussions. When people can put a face to this health issue, it goes a long way.
Continued luck on your journey.
Minda Haas
March 26, 2013 at 2:00 am (UTC 0) Link to this comment
Shanna, your recovery story is amazing! Would you mind describing what kind of treatment worked for you? Obviously you and I had different paths to recovery with different types of doctors. I’d love to hear more about different successes!
Best of luck with your half-marathon!
Shanna
March 26, 2013 at 7:33 pm (UTC 0) Link to this comment
Minda,
The first few weeks, I was on a steady course of Mac & Cheese and Phish Food ice cream therapy. This of course was unconventional, but one of the few things that made me feel somewhat better. ;-) I didn’t really undergo many treatments as you did, but did work through the anxiety that developed (never had any issues before). I would recommend the Anxiety and Phobias Workbook as a great resource. Otherwise, my neurologist helped with a course of medications that have kept my anxiety at bay. Now that I am feeling more back to 100%, I will try going off the meds to see if I can go back to my pre-injury state. A lucky break for me was that my neurologist was a friend of the family and had a good frame of reference as to what my personality was like before.
I still have problems sitting down and focusing, especially to read a book. This would be something that I hope to regain soon as I miss reading. Feel free to email me and I can get into more specifics if you like.
Wanda
March 21, 2013 at 7:51 pm (UTC 0) Link to this comment
Thank you for sharing, Minda.
Section 36
March 21, 2013 at 11:20 pm (UTC 0) Link to this comment
All I can say is, “Wow. So powerful. So glad you’re back.”
Thank you so much for sharing.
Kathleen
March 22, 2013 at 4:25 am (UTC 0) Link to this comment
Minda – awesome article. Thanks for sharing. I remember you alluding to some of things you mention here on royalsreview but I had no idea the degree to which those symptoms were bothering you.
And regarding your “Epilogue” it makes me think of a recent trip I took to DC and happened to go to a medical museum affiliated with the Department of Defense. As you can imagine, they had a pretty extensive exhibit talking about the effects of trauma on the brain, and therefore the lives, of our military personnel. Especially about how the redesign of the helmet introduced in the 1990s combined with better trauma response medical treatment has led to a whole generation of veterans dealing with living with concussions. I’m sure it’s no mere coincidence that suicide rates among this generation are so high, nor that their treatment has been so ineffectual if what you experienced seeking help is anything to go by.
This is definitely not something that only affects NFL players, and it’s so ridiculous when people dismiss the study of the brain as this. If anything, I feel like every week we are learning how much the entire body (and soul) are affected by the health of our brain, and yet it is probably the part of our body that we least understand.
Minda Haas
March 26, 2013 at 2:04 am (UTC 0) Link to this comment
Thanks, K.
The heartache of PTSD is something I think about a lot these days. It is a shame that so many men and women are affected by it, but it’s encouraging to see the work that is being done to diagnose and treat it, as the INJURY that it is. The doctor I originally planned to see in DC works closely with returning veterans at Walter Reed.
Yeah, definitely not just football. Literally anyone can get a concussion, which means literally anyone can be at risk for the symptoms I went through.
Jesse
March 24, 2013 at 4:25 am (UTC 0) Link to this comment
Thanks for sharing! What is the name of your Doctor – and does s/he have an online presence?
Minda Haas
March 26, 2013 at 2:06 am (UTC 0) Link to this comment
Jesse,
Her name is Dr. Mary Lee Esty. She is well-published in topics like PTSD, and there’s a lot that comes up when you Google her. Her staff is very responsive and helpful. Even though I did not end up being a patient of Dr. Esty, she was still instrumental in my recovery.
Fake Ned
March 25, 2013 at 6:01 pm (UTC 0) Link to this comment
A great story. Really moving. Excited that you can continue to share your photographic gifts to the world. Keep up the great work.
Chris
March 25, 2013 at 7:41 pm (UTC 0) Link to this comment
Thanks you for sharing, Minda. I’m late to the party here, so you may not see this, but I’m curious: Did your doctor(s) ever confirm the post-concussion syndrome conclusively, or was that a speculative diagnosis? I ask because ten or so years ago I also had sudden-onset neurological issues that lasted for over a year, manifested mostly by continuous dizziness and the occasional attack that was much like panic disorder. I had CT scans, MRIs, MRAs, and EEGs, saw neourologists, ENTs, and cardiologists, was tested for Lyme disease, celiac sprue, and tuberculosis, and made multiple trips to the ER (the attacks felt like what I imagined a heart attack to feel like, complete with numbness in the extremeties, chest pain, and extremely elevated heartbeat and blood pressure). I was prescribed SSRIs, Xanax, and Valium – Valium helped a lot. The closest thing I ever got to a diagnosis was an imbalance in the pressure in my middle ear. After a bit over a year the symptoms started slowly abating and I was eventually able to wean myself off drugs. Nobody every mentioned post-concussion syndrome, but it occurred to me a couple of years ago – I did hit my head sometime around when this first began, but it’s so long ago now that I can’t remember if it happened right before or a year before. I’m basically symptom-fee now, but fear a relapse because occasionally I’ll feel vague symptoms that previously had preceded attacks. I just wondered if your post-concussion syndrome was finally confirmed medically; it’s so unsettling to not know exactly what is wrong, as in my case. At any rate, I’m glad this therapy helped you.
Minda Haas
March 26, 2013 at 2:18 am (UTC 0) Link to this comment
Chris,
HOLY COW. It sounds like you went through a hell of a lot. thing is – nobody mentioned post-concussion to you then because that wasn’t even a thing people knew about 10 years ago. The understanding of closed-head brain injuries has exploded in very recent years.
The doctor who ended up treating me (Lucky #13!) was pretty confident in making that diagnosis, yes. Especially after so many other diagnoses were tested and ruled out.
I’m glad you’re feeling better these days, but it sounds like you and I share that small cloud of “what if?” fears. I hope both of us are just being paranoid, and we’re actually all better, forever.
Paul B
March 26, 2013 at 4:27 pm (UTC 0) Link to this comment
Minda,
Thank you so much for sharing this amazing article. I’m amazed at how you’ve been able to pick yourself up and keep going in the face of all that adversity. I’ve been the victim of several concussions and had never been properly treated by doctors like you were. It’s eye opening to realize that there are so many long lasting/life-altering after effects. In the event that I actually exhibit any symptoms going forward, rest assured I will print this article and take it with me to the doctor. I look forward to next Monday and the shenanigans that are opening day in a Royals Review game thread.
Paul (mitchfreakingmaier)
Mitch Semrad
June 17, 2013 at 4:08 am (UTC 0) Link to this comment
Although concussions usually are caused by a blow to the head, they can also occur when the head and upper body are violently shaken. These injuries can cause a loss of consciousness, but most concussions do not. Because of this, some people have concussions and don’t realize it. ‘*“
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Even I’ve lost patience with the Royals. Let’s get the pitchforks! » mindahaas.net
May 26, 2013 at 12:06 am (UTC 0) Link to this comment
[...] some, but even at their worst, there are much bigger problems in the world at large, and even in my own life. So, whatever. Let’s go drink a Royal ‘Rita at The K and hope for a win. If they lose, [...]