One of the hardest things for people dealing with PCS is that, to outsiders, they look and seem "normal". There's no cast, or scar, or chemo induced hair-loss -- no tell tale sign that "this person is hurting" like for so many other chronic illnesses. Couple that with the fact that most people who experience a concussion (and they are very quick to be diagnosed these days, so they almost seem like the vogue "ailment" in some circles) recover within a week or two. Completely recover. And while they are "concussed" they generally don't deal with much beyond a headache. And since virtually every impact to the head in any circumstance that results in even a short term headache is being cautiously classified as a "concussion", there are a lot of people walking around who think they've experienced what L is going through. They have most definitely not.
So, on what seems like an hourly basis one of us hears: "really, she's STILL having problems from that concussion? It must have been an awful hit -- did she lose consciousness?" followed by a skeptical look when the asker hears "no, she has never lost consciousness." As if we must be making this up, because a kick to the head certainly can't be that bad.
A common misperception people have is that, to suffer long term effects from a brain injury, the initial impact must be catastrophic, impressive, and/or result in loss of consciousness. That is unequivocally incorrect.
There is a huge difference between a concussion and post-concussion syndrome and there is no relationship between the two in terms of severity. Even a fairly simply TBI -- one where the impact does not cause loss of consciousness -- can segue into awful long term PCS. And the very worst TBI -- the kind where the football player is laid out, unmoving, on the field after a brutal helmet to helmet hit -- can resolve in a week or two with few or no lingering effects.
Because most people do not realize, or understand, the nuance, we deal with a lot of...ignorance (for lack of a better word) -- not intentionally hurtful, but frustrating just the same. People who "had a concussion" and felt better in a week or two do not understand the PCS world. People who know someone who "had a concussion" and felt better in a week or two do not understand the PCS world. I don't blame them, and try not to resent them, but sometimes it adds to the gripping isolation that is dealing with PCS.
I've joked that everyone I know who is addicted to coffee needs to quit caffeine cold turkey and those of you unlucky enough to get withdrawal headaches will get a tiny glimpse into L's world. Or, try having a migraine 16 hours a day, 7 days a week, for going on two months. And while you are feeling the effects of the headache, spin around in circles for :30 every couple of minutes to get a taste of the added dizziness factor. Now try to read while you are doing that. Etc.
The battle with PCS is a brutally private, internal fight. The feeling of isolation, for the sufferer and the caregiver(s) is profound. In the age of social media, the world you are not able to be a part of is always in your face. Because things like facebook make it incredibly simple to reach out to people, it is even more jarring when friends... don't. So in addition to all the churning feelings -- anger, sadness, loss, fear, pain, anxiety, frustration -- there is an acute sense of... invisibility.
When you think about L's day, it superficially appears mostly normal. She gets up, goes to school, swims a bit, does some homework. It is only when you look more closely that you can see how f***ed up her world really is...
If you listen, you realize there's no music or TV on. Ever. Not in the car. Not in her room. No jamming to 95.1 while getting ready for school. No relaxing on the couch watching a movie. No falling asleep to instrumental music. No music quietly playing while she studies. She's allowed to try and listen or watch tv, but, if you ask her, she'll tell you she has decided that, if she's going to feel like ass it needs to be because she is trying to catch up/keep up in school, or she's doing her rehab exercises, or she is trying to swim. She knows she is going to feel awful, so she is prioritizing why. And music and TV just aren't worth it.
If you watch, you realize that she doesn't interact much socially. She may go to the lunchroom briefly, but she generally eats by herself or with her sister in the truck or lies down at the infirmary. She doesn't get to hang in swimmers' corner during activities period, because she is lying down in the infirmary trying to get the headache down. She doesn't socialize much before or after school because she is generally doing rehab, or PT, or tutoring, or taking part of a test or quiz, or talking to a teacher. If you ask her, you'll hear how lonely it is to be her -- how she is not really a part of the world, and how most of the world has no clue what she is dealing with and she is too tired, overwhelmed, and in pain to try to explain it. And you'll hear how much it hurts that people she considers friends seem to so easily forget about her as they move on with their busy lives. Existing but not really existing.
If you look, you realize that she may understand the concepts of what she is learning, but she often transcribes words or symbols or cannot recall, without prompting, a formula or vocab word. You'll see that, while she is struggling through as much homework as she can, she is miserable, and barely hanging on (never mind actually learning). And if you actually talk to her, you'll learn how upset she is that she needs special treatment (in her mind) and how embarrassed she is to not be able to get the grades she is used to earning... and how she feels like the teachers will think less of her or think she isn't trying. And if she really talks to you you'll hear her disappointment at probably not being able to try for a 4.0 and probably not being eligible for NHS if the semester goes the way we think it is going to go (for perspective, today I sent her to take her spanish midterm and told her "don't come home with lower than an F" and meant it). You'll hear her frustrated sadness because she had finally started to figure out how to take her Honors History tests and was proudly moving into A range when this happened, and now she's had to withdraw from her favorite class that she had worked so hard to master. And mostly you'll hear loss. Physically there but not, really, there.
If you see her at swimming, you realize that, while she is there, she is not THERE. She does her own rehab exercises in the dryland room, often away from the rest of the team. She swims in a mini lane, alone, so there's limited risk of any head impact. Sometimes she makes it for 2000 yards, sometimes a bit more. While the rest of the team is gearing up for some big meets in the next month, she is... not. Swimming but not swimming.
If you trade places with her in your mind, you realize that, other than trying to stay afloat at school, doing her therapy, and resting to try and feel better, her life does not consist of much. Think of what you do to relax. Watch TV? Nope. Read? Nope. Listen to music? Nope. Go to a movie? Go to a restaurant? Go to a sporting event? Go shopping? Go to an amusement park with your sister and friends? Nope nope nope nope. Nope. Last time she at least had photography. This time, not even that. So, not only is most of your world a haze of headache and dizziness while you try to function and meet your academic responsibilities, there is no real escape other than sitting in silence. Try that for a few days. It might be worth, for a while, feeling awful when you read or look at instagram or watch a tv show. Might be. But after a while it won't be, and when you have so many other things you feel like you need to, have to, prioritize, it won't be at all worth it. So, your day often distills down to two things: causing pain to try and keep up in school and hiding from pain, alone and in silence, to try and return to a level where you can then cause pain again. Living but not living.
Sound fun?
If you know anything about L you realize that, when she is alone with her thoughts, which is anytime she is trying to reset the headache, she is acutely aware of what she is missing.... of lost time... lost progress... lost opportunities... and terrified of what it means for her future. Imagine being 15, with big goals -- academic, athletic, etc. And then imagine not knowing when, or if, you will be able to function without pain and fogginess, never mind actually pursue real goals. Your entire world has been narrowed down to two things: pain and silence. Well, three: trying to survive on a daily basis in a world that doesn't slow down, quiet down, or understand. And ultimately, what L is left with, is her thoughts, and feelings -- intensely individual and personal -- and the anxiety and anger and sadness those thoughts engender.
We get asked a lot what the timeline is or prognosis is for recovery. There isn't one. TBI doesn't follow a pattern, or a course, or any recognizable path. Each person is different. Each TBI that each person incurs is different. The path followed by Lexi's first one is not the same that this one has followed. There are no guarantees. There is no way to predict, or know for sure. There is no reason to think these symptoms won't resolve. There is no reason to think they will. All we can do is keep trying, keep moving forward, and hope that her tolerance for pain and willingness to push herself outlasts the symptoms. L said something the other day that hit me hard, because it's not something someone so young should be struggling with (paraphrased here): "I don't feel like I have any real goals. Last time my goal was to get better and get back to doing everything, but I feel like, what's the point if I'm just going to have to go through it again. I already did this once."
Yes, yes she did. And hopefully we will do it again. We've got a great support system at L's school. Her coach has been a bright light for her. Our family is strong and resilient. There will be nights like last night where L and I share a good, hard cry... then regroup, sleep it off, pick ourselves up and head out to survive the week. And maybe someday we'll be back in a place where we care about super bowl games, or triathlons, or social activities, or all of that other fun stuff. Maybe.
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