At some point maybe I will repost the things I wrote in the months after that incident. Suffice it to say, it was six months of hell -- academic, athletic, and emotional.
No sooner had she returned to reasonably full activity than she incurred her second concussion.
This picture was taken shortly after she won her age group at the Raleigh Ironkids race, and then was intentionally pegged in the head with a cornhole beanbag by a child with anger management issues and a serious lack of parental supervision.
That concussion, thankfully, did not turn into Post Concussion Syndrome (to be explained shortly), and the symptoms resolved, for the most part, within two weeks.
I say "for the most part" because, even months later, L was so sensitive to lights and loud sounds that we had to leave a Christmas concert very early, and, when we did, she looked exactly like the dark-circles-under-her-eyes zombie we had come to associate with the PCS battle.
L got her third diagnosed concussion in early Dec in the chaos that is the warm down pool at a large invitational. She ducked under a lane line and caught a whip kick to the forehead from an older boy kicking on his back. He didn't stop. She knew immediately. I was in the stands and saw her on the deck, crying, and I knew immediately too.
And so it began. Or continued.
This post isn't really about the nuts and bolts of concussions, or PCS. Maybe I'll write more about that stuff later. I will say that it is important to understand that, for the vast majority of people, the symptoms caused initially by a TBI -- traumatic brain injury -- generally resolve within the first couple of weeks. BUT... for an unknown percentage of the people who experience TBI, even mild ones that don't involve loss of consciousness, the initial concussion symptoms solidify into what is called post-concussion syndrome (PCS), and those symptoms can last for weeks, months, years, or forever.
I have read that the severity of the PCS does not correlate to the severity of the TBI, which is confusing to some people -- "well it wasn't that bad a hit, so why does she still have symptoms?" is a common question. There are a lot of common questions, actually. "She seems fine when I see her, so what's the problem?" and "Well my friend's son had an awful concussion playing football but was back in school three days later, so why is it taking L so long?" or "Does music/tv/reading REALLY bother her that much? Why can't she just take motrin and deal with it?" etc etc.
So I guess I am writing this for my own satisfaction, and maybe L's too, since very, very few people have the slightest clue what she, and by extension, our family, is dealing with on a daily basis.
What's a day in the life of a 15yo with PCS like? (This is my interpretation, based on a lot of extensive conversations with L)
Wake up mostly headache free. Shower and start to get ready for school. Get snarled at by your older sister because you asked her to turn down her music. Feel the start of the headache. Come downstairs, quietly turn down the radio your mom had on while she made lunches. Cringe at the chaotic barking of the sheps as they implore someone to take them to the trail. Unknowingly form the shadow of a bruise under your eyes as the headache starts to rise from the noise, and lights, of a normal morning routine. Choke down some cereal or a bagel because, as the headache goes, so goes the nausea. Get snarled at again by your sister when you go back upstairs, just because that's what sisters do and this one understands, but yet doesn't understand, why her normal ear splitting music needs to be turned way down or off, thus ruining her morning mojo.
Load up the vehicle and sit with the same sister who, depending on the day, her mood, the traffic, the alignment of the moon and sun, and other factors, may or may not be nice about turning the radio off and having an actual conversation.
Feel like a burden.
Feel the headache climb a bit more and the dizziness kick in. Feel your cereal churn uncomfortably in your stomach. Feel the dread rise with the nausea because this will mark the 7th straight week of having a continuous headache, and it sucks.
Arrive at school. Walk through the milling kids and chaos at the lockers, wincing at what should be the normal noises of the start of the day. Feel disconnected from your peers. Spend the next 30 minutes racing from room to room trying to find various teachers and advisors to start plotting out a time-line to make up missed tests and exams. Worry, repeatedly, how to do that AND keep up with your current classes. Miss two teachers, find two others, start to come up with a plan that is stretching seemingly forever, and certainly past spring break. Try not to dwell on the fact that the family vacation over spring break you'd been looking forward to was now cancelled. Feel angry and sad because YOU are the reason it was cancelled. Try to believe your Mom's assurances that no one blames you and that it was her decision. Fail. Feel awful. Fit that in around the increasing headache as you try to process the ton of administrivia that surrounds trying to keep up AND catch up in mostly honors classes.
Go to Algebra II. Realize that looking back and forth between the white board and your note book makes you dizzy and spikes the headache. Arrange with the teacher to get skeleton notes from her, when practicable, so you can just keep your head down and try to take notes. Try to focus on the teachers words, understand them, and translate them into written notes. Transpose pluses and multiplication signs, but don't realize it until later. Realize that some of the concepts are based on things you missed. Make mental note, which vanishes immediately, to talk to teacher about that missed concept. Try to remember what you were trying to remember. Give up (realize it later, after school, when you are trying to work on homework).
Ignore the now insistent headache and increasing dizziness. Try to focus through the fog. Put your head down for a minute to try and reset a bit. Feel embarrassed and grateful that the teacher always thinks to turn off the awful flourescent lights which, when the headache gets high enough sport a sparkly aura around them. Choke down despair when you realize your head is already hitting the level that often turns into what the doctors call a post-concussion migraine state, which is a fancy name for you becoming an off-balance, in-pain shell of yourself.
Try to do a few of the homework problems. Struggle as the numbers start to blur. Feel embarrassed and grateful yet again when your teacher, without prompting, notices you are struggling and comes over to help, and then circles the ones she wants you to concentrate (ha, now that's a funny one) on for the night.
Head to the infirmary during the break. Lie down and try to reset. Contemplate strangling the workman drilling in the room next to the infirmary. Give up on resting. Walk to your advisor's office. Discuss the technicalities of trying to take a full length quiz or exam. Discuss taking your Alg II honors quiz tomorrow, and moving tomorrows Chem honors quiz to the next day, after your chemistry tutor session, and whether taking a spanish quiz on the same day as the chem quiz will work. Discuss the idea of making up a couple of midterms during spring break, if possible, with extra time and built in breaks to try and keep the headache under manageable levels. Feel embarrassed and angry that you need these accommodations.
Walk to chem class. Contemplate stabbing yourself in the eye with a pen when the teacher puts a video on to introduce a new concept. Almost instantly spike a higher headache. Ask a friend to let you take cell phone pics of her notes since you cannot keep up and are just writing down the key concepts to remind you. Start to lose focus as the fog moves in and things become blurry. Somehow make it through the rest of the class.
Grab your lunch and go to your sister's truck and eat, alone and in silence. The Pitt doctors pushed social interaction, but you've decided that the consequences aren't worth the benefits since the first day you ate lunch with your friends you paid for it dearly the rest of the day.
Run through the gamut of thoughts and emotions, like you usually do in the chunks of quiet time you spend alone with yourself. Try to forget how tired you are -- tired of dealing with the pain, tired of juggling the rehab and the administrivia and the appointments and the rest periods and the exercises and the homework and the thoughts. Try not to think too much about how far behind you think you are getting in swimming, or how left out of everything you feel, or how sick you are of not being able to just kick back and read a book, or watch a crappy tv show, or listen to music. Try not to give into the urge to just feel sorry for yourself and lash out at everyone around you who is lucky, or ignorant, enough not to understand.
Try not to wonder if this is going to cost you National Honor Society. Try not to wonder if you'll ever have another headache free day again. Try not to wonder how you are ever going to catch up when you can barely keep up and what's going to happen to your grades this semester, because keeping up isn't mastering and mastering isn't in the cards when you can't read or concentrate for even 20 straight minutes at a time.
Try not to look at the kids walking by and feel resentment. Try not to wonder why you are the one who has to deal with this - why YOU never seem to catch a break. Try not to feel like you have less and less in common with your peers. Try not to feel completely alone as most, maybe all, of them seem utterly oblivious to what your life is like, and it's easy to confuse oblivious with uncaring.
Leave the car with almost the same headache you entered it with, mostly because your damn brain won't shut up.
Head to Spanish. Try not to cry when he puts a video on. Get sent outside while they go over the exam. Get left outside when the teacher forgets you are outside. Go to English. Try to focus on the Ancient Mariner. Find yourself with absolutely no idea what the heck this writer is trying to say, which you realize may not be completely PCS related. Wander in a full blown fog to the office and check out for the day.
Go to the dry land room at the pool. Get a med ball and go through the exercise routine prescribed by the Pitt doctors. Do it under coach's supervision, but, as with most things in your day, alone. In silence. No music. No tv. Just you and your thoughts and your headache and dizziness. Get on the stationary bike and peddle, in silence, for 20 mins or so until the team starts to wander in. Gather yourself to deal with the chaos and noise for a few minutes just to be around your teammates and feel like you are part of things. Swim in the little mini lane for a while, alone. Take a break when the dizziness and headache make you feel, and look, green.
Stumble to your mom's car. Collapse in the seat and close your eyes. Tell her about your day even though your head just wants you to shut up and go away. Discuss logistics and schedules for the next day. Try to remember what you planned with each teacher. Depending on the day, go to PT for your neck or chem tutoring or, sometimes, just home. If it's PT day, spend an hour doing neck exercises with lasers and pressure gauges, trying to ignore the music and lights and sounds and headache. If it's chem tutor day, rest for a bit and then spend an hour trying to catch up and keep up in your honors chem class, understanding the concepts as you talk about them and the forgetting them immediately because no memories are going to competently form with this massive headache. If it's go-home day, stumble into the house and lie down for a while, trying not to stress about everything you need to do or how little you remember from class or how spotty your notes are or how unclear you are about what you are supposed to do with the chem homework (all, some, none???). Take a bath to clear your head, knowing it won't work. Do your rehab exercises with the stupid strings and beads and stupid Xs on the wall. Feel worse.
Lie down wishing your mom would come snuggle for a few minutes. Feel bad for asking her to because you feel like a burden. Maybe dig deep and try to do a bit of homework or study something. Feel awful. Start slurring your words. Stare blankly at dinner because you feel too nauseated to eat. Get testy and frustrated because your Mom wants you to eat, tells you you need to eat, but nothing sounds good and your head hurts too much to think about it. Feel bad for snarling at your Mom. Get mad at yourself, the world, your mom, your sister for chewing and talking and breathing too loudly, the dog for barking, your head for hurting, Matthew for trying to be funne, yourself for not feeling better, and the stupid bird for chirping in the back yard. Retreat to your room to avoid the pained, quizzical looks on everyone's faces.
Give up. Lie down. Cry a little. Think too much. Feel alone. Snap at your Mom and apologize. Start to cry because you feel awful and feel worse for showing it. Talk about some of it with your Mom. Come up with a game plan for the next day. Ask your mom to stay with you a while longer so for a few minutes you can feel a little less alone. Hope she stays until you are drowsy and ready to doze off, so that maybe you will fall asleep right away and not have to lie there alone with your thoughts.
Fall asleep.
Get up.
Repeat.
Over, and over, and over again.
Welcome to L's world.
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