I commented on the death by suicide of 23-year-old is Stanford graduate student and Olympic cyclist Kelly Catlin earlier this month.
Reader Robert VB pointed me at an article in Bicycling.com: Pro Cyclists Open Up About Depression. There is of course nothing “pro” about anxiety and depression*, but pro cyclists presumably are going to get more attention than my concussion log —I applaud their sharing of their experiences and that Bicycling.com thought to publish the article.
Carmen Small’s experience
The account that resonated powerfully for me was that of zzzzzzzzz. It mirrors my experience (an OMG moment when I read it), differing only in that her trauma was more severe than mine and more than I care to contemplate, and the impacts on her have lasted longer, with less good resolution of symptoms.
And I’m different now. I have anxiety about everything, I cannot deal with stress, I am overly emotional, I am sad all the time, I am irritable, I have trouble with noise, driving makes all this worse (not the best in my profession), and the part that is the hardest is I have a fucking headache every day.
I'm screaming on the inside and looking fine on the outside. I get comments all the time, “Oh, you look great. How are you?” I just normally say, “Yeah, doing well thanks. You?” mostly because I am sick of explaining two years later that I still have problems with this damn concussion. I am frustrated, I get depressed, and I hate my life most days, but I put on a smile and head out to do my job and act "normal." I
My sense is that few people (not even trained psychiatrists) can begin to understand the complex set of feelings she has expressed in any 'gut' way—but having gone through it myself, I feel qualified to say her description is spot-on as far as words can go. I am glad to see it in print since just knowing one is not alone in the world is some comfort, and it might at least help non-victims to have some degree of understanding when no physical issue is visible. That last point cannot be emphasized strongly enough: brain injuries are invisible and yet most everyone sees only the physical body. No blame to them, but my own family could not understand, so how would any stranger?
No one can foresee the benefits of trying to help (for either party), but that can’t happen without communication, so in spite of being a very private person, I feel compelled to reach out: readers are welcome to contact me if they have had a concussion along these lines that they would like to discuss.
My experience, particularly after my concussion, is that out there for the finding exists a precious thing: minds that can operate on the same wavelength effortlessly, be it a shared experience like a concussion, or otherwise. If you’ve had a concussion, reach out and don’t give up because if you find the right person, it could be a breakthrough. Ditto for regular life. I meant that both intellectually and romantically and for the lucky few, both.
I consider my concussion very lucky in multiple ways. All of my symptoms have receded into the background, though I have some impairment in terms of workload, sleep needs and similar a year later, and maybe forever. The benefits have lingered: not a day goes by in which a positive perspective on life is not of some use, sometimes things of minor importance, sometimes more. Still, there are days (or series of days) where fighting the Anxiety Beast consumes nearly all my energy, problematic for a self-employed person. Yet that weakness has made me stronger and wiser and I am not sure I would trade it back for an “undo”. I have little idea how my own experience tracks, hence my interest in talking with others.
With full respect for medical professionals: I don’t think that doctors of any kind are really of much service post-concussion beyond some basics, and only in the most primitive sense (how to recover quickly and well is a empty book for the medical profession). Plus, not having any skin in the game (with rare exceptions not having experienced a concussion), what doctor of any kind can really relate, particularly those pressed to spend 5.87 minutes per patient on a rigorous schedule? Thus a dry clinical approach as with the physical body. Which is not to say that counseling* is without merit; it surely is in terms of tools and guidance in dealing with challenges. But it is cold comfort compared to a shared experience and very hard to access mental health services*, which are rendered in medical setting that is clinical and formalized and thus itself a source of stress—and stress is intolerable after a concussion, or it was for me—nature/outdoors was and is free and was my solution.
Reader anon writes about a severe concussion involving a hematoma:
Amost six years for me. worse, things are *still* changing. it’s as if I have some sort of balance to maintain, something gets better, something else gets worse. my short term memory is better, but I have so far failed at picking up the guitar again. I used to be a finger-picker, but my right hand last three fingers don’t exactly work right so I thought I'd try it with a pick. for whatever reason my right arm, hand, etc have gotten worse recently so that’s on hold, sort of. it also ties in with the multitasking thing I mention below.
People ask me how I am, and if is someone I can level with the best I can say is “medium”. most breeze right by that.
It is difficult to decide what remaining thing is the worst pain in the ass. I’ve adapted to all sorts of things, for example my cellphone is now my memory for a lot of things, I still don’t ride a bike, etc. I think the worst thing is I can’t do things in parallel, i.e. when I start something I have to finish it before I can start the next thing; I can’t explain it any better than that. Another is I can perform pretty complex tasks, even if new to me, but only if there is a straight through path; all I need is a few seemingly equal choices for how to proceed and it is as if my brain freezes. That choices thing may be just a variation on doing things in parallel, it is getting hung up in a speculative execution loop (apologies to intel).
In all I think I am still making progress, but sometimes it is difficult to keep in mind that *this* is progress. of course I could barely walk when I got out of ICU rehab and I’m way past that now…sometimes I can even get on a ladder.
It is very difficult to talk about this shit, in this note I am practicing ;).
One more thing, not all of my symptoms are directly due to the original injury, for example I had a stroke to the thalamus while I was in ICU (after the surgery to slurp out the subdural hematoma), which probably is the source of a fair number of my problems. true I wouldn’t have had the stroke without the head injury, but still separate events. (note: this leaves out a lot of probably irrelevant detail, seizure(s), pneumonia, etc etc)
In all I’d say if TBI is on the menu have the cheeseburger instead. I *did* get a spectacular scar out of it, 46 staples and matching stitches I think, frankenhead if I shaved my head :). the surgeon did a good job with that, you can’t see any of the scar (skull canyon too mind you) without using the braille method.
Indeed so, I came very near to death. another oddity, my symptoms didn’t really go crazy until about a week had passed…I spent a few days in the hospital, no apparent issues, go home…oops. lucky me, I don’t have some of the worse leftovers, for example pain from the peripheral nerves on that side, and I do think I am still improving overall even though some parts are definitely not getting better.
I can’t believe high school kids play football and there is at least college level boxing. I may have mentioned this, when I was in high school a kid got a bad concussion playing football. his father, a doctor, signed a release to let him play again. He got hit, boom, lights out, dead. I am ok with adults taking stupid risks as long as they don’t damage other people and as long as I don’t pay for the consequences, but I don’t think kids are capable of making that judgement. Imagine being that kid’s father, living with that for the rest of your life.
I certainly don’t believe in living a risk-free life (as if that is actually possible), but some things are just stupid.
Another thing about TBI, I think you just about can’t generalize about them, there seems to be a huge variation in symptoms, recovery, etc. I think the doctors are really just groping other than the big stuff like relieving a subdural hematoma. the brain is an amazingly complex system. it would be nice if doctors had more training about them, but how?
BTW, you’ve probably noticed I’ve been giving this a drop at a time. two reasons for this: I knew about the diversity and didn’t want to scare the crap out of you unnecessarily; and of course because, as you know, it is difficult to talk about. I wish I had the magic wand, but there isn’t one.
DIGLLOYD: I am thankful that I did not snap my neck or have any truly serious injuries in either of my crashes. Setting expectations is key to recovery, without making cognitive commitments about limits that aren’t valid, but I have to admit I question my abilities more, and that never occurred to me prior to my concussion.
The two best days of my adult life were the day of my concussion (March 17 2018) and my 2nd crash (Dec 30, 2018). I say that because both times I could have easily broken my neck and/or had far worse issues. That's a darn good day! It never occurred to me to look at it in the reverse (except as pondering my reactions later). I don’t know if I could have that attitude had it been worse.
I’d point out for anyone with a concussion that symptoms can worsen after some days—I ended up in the ER (again) 5 days later, incoherent. There are physical changes that from what I can tell put the brain at heightened risk of damage, along with chemical destruction of cells in the brain.
Medical science is desert wasteland in terms of understanding and treating concussion. I think it will take 20 years and have to be its own specialty and we will need many new tools (scanners, anti-damage drugs for right after, neuro stimulator drugs and electric and electromagnetic tools that promote regrowth, etc).
As for high school football, someday it might be looked upon as child abuse; in my view it ought to be banned—guaranteed lifelong injuries for some players. Also, football is a game partly about hurting the other sideintentionally—tribalism at its worst—that was the explicit expressed sentiment at my locker room in high school (I did cross country and track, never football). Turned me off on the game forever—just loathsome. Then there is the implicit "you are a loser" undercurrent unless you are a starter on the football team—a few stars and who else benefits?