Yeah, that's the question we have too... although this one was asked a bit less softly by a teacher who, whether he intended to or not, made L feel a bit like a malingerer and a lot like a burden.
And no, she didn't not finish her rough draft of her paper because she "didn't feel like it" when she got home from school, but thanks for asking.
I understand that what Lexi is dealing with is difficult for people to grasp. Perhaps some people think she should just be able to suck it up and push through.
So let me try and put it in terms everyone can understand:
Try living without using your brain.
If you hurt your ankle, you can use crutches. You can stay off of it. You can use a wheel chair. You can still get around without using that ankle. It might be awkward, but it's doable.
Try reading without using your eyes or brain.
If you hurt your shoulder, you can use your other arm and put that arm in a sling. It might be awkward because it might be your dominant arm, but you can still function.
Try memorizing information without using your eyes or brain.
Now, tear a hamstring. Rest it for a few days. Is it better yet? Why aren't you out running on it? Why aren't you pushing through it? When is that hamstring going to feel better?!
I've realized that, maybe thanks to our sound bite, story-of-the-minute filled world, many people have no staying power. They are all energized and involved initially, but as the buzz wears off and the drudge settles in, they lose patience and interest and move on to the next "cause" or energizing topic. If someone has a situation that can't be resolved in a few days or, if you're lucky, weeks, people move on. Well, everyone except the person living the issue.
On many levels I can understand. Time passes for you and you've moved on, so it is hard to understand that, for some people, time doesn't move on so easily. For anyone dealing with a chronic illness, or even a chronic divorce (lol), or any sort of "not easily resolved" situation, the pain, and pressure, and stress, and worry doesn't wane. And until you are in that situation, you can never really understand how it feels.
I don't expect people to "get it" and I am not overly angry at that teacher for his gruff and insensitive comments to L yesterday. This is hard and exhausting for the people closest to L (so, yeah, try BEING L...) so I know outsiders are going to have a harder time understanding that, for us, time has stood still for now while we try to deal with day-to-day concerns while struggling to keep a positive, long term outlook. I do get a little frustrated because ill-timed comments make OUR lives more difficult when it comes to keeping L's chin up, but... yeah.
I am, however, red-rage angry at one individual, who appears to have bookended his 3 years of lawsuits by completely checking out during L's two biggest challenges of her life. And in 784 short days, maybe I will tell you, and him, all about that.
On we go.
21 February 2015
UPMC trip #2
I haven't had time to write, so I'm just gonne post the update I sent to L's school. More later.
That was a very quick and intense trip. And cold. Really really cold. Lexi should be completely worthless today in school, btw :-/
The good:
1. It snowed.
2. Lexi’s scores on the IMPACT test rose from a month ago in most of the measures. They are not where they should or will be when she is fully recovered, but they are trending in the correct direction.
3. The UMPC team identified the migraine component as the #1 issue, followed closely by vestibular and ocular. So, they adjusted her rehab and recovery protocols a bit to address that (see, also, “the bad”) and so she has a new set of exertion exercises and a modified set of vestibular exercises and we will continue with the neck PT.
4. They were thrilled with all the flexibility and accommodations provided by Bolles, and encouraged Lexi to be more diligent in taking short rest breaks BEFORE her headache reaches skull splitting levels.
5. They believe that Lexi is caught in a migraine cycle, so they are starting her on Amantadine, which has been showing promise in treatment of PCS in adolescents, specifically headache, fogginess, fatigue, and concentration issues. It takes 5 days to get up to full dose and we should know pretty quickly if it is working.
The bad (well, depending on your perspective):
1. They admired and appreciated how hard Lexi was pushing it but strongly believe she is overdoing it, which is in turn miring her in the migraine cycle and slowing her improvement. They seemed happy with the school things, although they are not happy her grades are lower than normal (meaning the symptoms are still too prevalent and disruptive). As I mentioned, they REALLY want her to control the headache level better during the day. So, if she closes her eyes and fades out for a few mins during class, please don’t think she is being disrespectful or falling asleep (well, other than today. She may be falling asleep today lol).
2. They also shut her down from swimming for all except a few hundred yards that don’t involve head movement. They feel that swimming is the most challenging sport to return to after a vestibular system injury, and that by doing so she is over-taxing her system and preventing improvement. It took Dr. Collins talking to her several times and me translating in both directions for her to at least outwardly accept that this is not punishment or, in teen speak “stupid”.
The ugly:
1. We go back for appointments on March 10 and 11th, which means we fly out the night of the 9th, aka the day Christi and I drive back from a big meet in Nashville. Between 6a and 11pm I will zip from Nashville to Jacksonville to Baltimore to Pittsburgh. Then Christi has surgery on her feet the day after we get back (go ahead, laugh… it’s ok…).
2. My discover card balance. :’{
On we go.
13 February 2015
10 weeks and counting
It will be ten weeks, tomorrow, since L punched, er, kicked, her ticket back to PCS-ville. The question of the week is, of course: "is she getting any better?" It is, surprisingly, a quantifiable thing to answer in some ways, yet extremely subjective in others.
How can we quantify it?
1. L will re-take the IMPACT test when we return to Pitt Tuesday. This is a test given pre and post concussion to measure things like recall, retention, speed of processing etc. Theoretically, an athlete has taken this test prior to the season (called a baseline test) and then, in the event of a TBI, can retake it to give physicians some guidance as to the extent of the "damage" cognitively. Some schools do this, some do not.
L has never had a pre-concussion baseline, but she does have one quasi baseline from when she was 12 (post two concussions but theoretically recovered from both). She took the test again a couple of weeks after this incident, and the results were ugly. She re-took the test a few weeks later at Pitt, but I somehow have not gotten those results yet. When she retakes it Tuesday there will be three measures, each spaced about a month apart, to illustrate what progress is being made and what deficits still remain.
2. Vestibular and ocular assessments: for example, tests to measure at what point her eyes lose focus and see double and to measure eye movement and it's relationship to symptom increase.
I'd say, under normal circumstances, performance on scholastic assessments (quizzes, tests, midterms) would also provide a quantifiable measure, but I think it requires more than a half a quarter of production to really look at that.
How can we subjectively measure it?
1. How much is L doing and how does she feel doing it? L reports some pretty nasty symptom outcomes on almost a daily basis. BUT, she is also tackling more and more on 50% of the days. (I believe that that then impairs the other 50%, but there is only so much control I can exert over her when she is at school... ultimately, it is on HER to be intelligent and push it but not overdo it. That may be too much to ask of a highly driven, proud, intense 15 yo with an impaired brain.)
She has taken, and somehow passed, two of her four midterms she has to make up. She seems to be holding at a steady C+/B- range for her tests and quizzes this quarter (a full grade or more below her usual averages, but better than I'd expected...). She is doing these things on minimal studying, since focus and concentration and recall are all still very affected.
She has been all over the place swimming-wise, and what she does is very dependent on how beaten up she is from the school day. Since some days start with 7a physical therapy and end with tutoring, she is not always up for pushing through the pain and nausea to swim. She's actually swimming more than UPMC prescribed, plus doing all the other exercises and rehab.
She seems to be attempting more homework in a fairly timely fashion. She's got a draft of an essay due Tuesday, which will not be very fun for any of us (L puts a lot of pressure on herself under the best of circumstances... when words and ideas are not flowing... let's just say it could be a long weekend...). She's not taking as much extra time on assessments and such as I would a) like or b) think she would, in part because she is too damn stubborn to rest the way she is supposed to so as to stay below migraine level.
2. How is her demeanor? At times throughout this mess she has been hilariously funny (sometimes even intentionally so). At other times she has had the disposition of the mama water moccasin we stumbled on on the trail last summer who told us in VERY. CLEAR. snake language to back the hell away from her babies and move along, quickly. And sometimes I wonder if she is just completely emotionally flat lined. The moments of feeling very sorry for herself are amazingly few. But the moments where her frustration, pain, and/or boredom break out and punch me in the proverbial face are not all that few. I... think ... that the trend has been towards a brighter persona, but frankly I'm too close to the fire to really have great perspective on that one. I try to apply what I learned waaaaaay back when I was 7 or so and my grandfather was dying from cancer: don't get too excited at the good days and don't freak out at the bad days (if I had a buck for every time we raced like lunatics to NY because that man was FOR SURE GOING TO DIE NOW during the two years he was sick, paying for college would be a breeze...). But, honestly, it's hard not to get a burst of optimism on the up swings and even harder not to just sit down and cry in despair on the down swings.
3. Has she started talking about future goals (ie swim meets, classes next year) yet? No. Nothing concrete. She had hoped to be swimming enough yardage consistently and to feel well enough to go to our big meet in Nashville in 3 weeks. I told her this week that she is not going and, while it did NOT go over well, I think she knows I am correct. She is still so photo and phono sensitive that there is no way she can handle a 3 day prelim/final meet, plus two 8+ hour car rides. It would also be wildly insulting, in M and my opinions, to all the people busting their butts on her behalf at school for her to skip two days of school for a swim meet right now. And, honestly, it would be wildly unfair to her sister, C, who is excited for this meet and who should not have to spend her last short course championship meet before college in silence, which is how the car ride and hotel would be at all times were L to attend the meet.
She also does not have any goals academically other than survival. The young lady who holds herself to high standards academically is now more than happy to take a C. What any of this will mean for honors and AP classes in the future is unknown, and, frankly, irrelevant to me. It is not to her, but it is a sign of where she is that she is not actively talking about any concern she has right now.
So, that's the update right now. My gut says she is improving somewhat, but not in any sense quickly. I suppose she could live the rest of her life like this and ostensibly function fine to the outsider's eye, but I don't know how long she can push herself and deal with the miserable consequences of doing much of even simple things. Chronic pain changes people. It changes personalities, and attitudes, and even futures. We'll never have a control group to know what "might have been" had L not gotten these TBIs, and I try not to dwell on it (because it makes me want to puke, or cry, or punch something, or some unattractive combo of all three), but it is always there in the back of my mind.
That's why the support, encouragement, and kindness of people is so very important to L (and to me). And why the absence of it from some people makes me so. very. angry (yes, Captain Ahab, I'm talking about you...) I've always tried to be a thoughtful person and to keep other's situations in mind and reach out, even just by text, to check on them. It doesn't take much effort, but it does take awareness of things and people around you. And I guess it takes making the other person important enough to you. But, I digress.
Were it not for her school, we would be in trouble. Not any one person, but pretty much ALL of the people involved in this situation over there.
- the academic dean who came into our meeting having read my emails and ready with a fluid plan to help L catch up and keep up
- the head of the upper school who has been incredibly supportive and communicative
- L's fantastic advisor who has to be one of the most insightful, thoughtful, and caring people I know, who has spent an inordinate amount of time coordinating and communicating on L's behalf, checking on L, being proactive to help create an environment as conducive to L's success as anyone can create, and even bought an inspirational piece of art for L that eerily mirrored the quote on L's phone
- L's teachers who are a wildly diverse yet uniformly caring bunch (even the gruff one) and who, on a daily basis, say and do things that make me cry tears of thankfulness... from grading with kid gloves to telling her inspirational stories to making her feel very, very cared about.
-L's coach, who has been patient and kind and sarcastic and teasing and generally a whirlwind of making L laugh and feel visible, who will take the time to make up and text mini workouts for her on a Sunday morning or to brainstorm ways to keep her feeling like part of the team.
My parents, who always seem to find something cute or thoughtful to send down to help cheer L up, and my sister and her family, who always take the time to text or email just to check in and see how the day went. M's mom, who calls to check on L frequently. Some unexpected support and friendship from people who have dealt with major children-related health issues. Kind words from distant facebook friends, especially Bret, who has a special understanding of L's world. Without you all... I just don't know.
And of course, the ever steady, every loving, ever positive M (and the ever noisy, fiercely loyal and well meaning C, lol)... our family is as strong as it is because of you. Some men were born to be fathers.
To the people on Team L, I can never repay you guys. But if you ever need us, our family WILL be there.
Off to Pitt and UPMC in a couple of days. On we go.
How can we quantify it?
1. L will re-take the IMPACT test when we return to Pitt Tuesday. This is a test given pre and post concussion to measure things like recall, retention, speed of processing etc. Theoretically, an athlete has taken this test prior to the season (called a baseline test) and then, in the event of a TBI, can retake it to give physicians some guidance as to the extent of the "damage" cognitively. Some schools do this, some do not.
L has never had a pre-concussion baseline, but she does have one quasi baseline from when she was 12 (post two concussions but theoretically recovered from both). She took the test again a couple of weeks after this incident, and the results were ugly. She re-took the test a few weeks later at Pitt, but I somehow have not gotten those results yet. When she retakes it Tuesday there will be three measures, each spaced about a month apart, to illustrate what progress is being made and what deficits still remain.
2. Vestibular and ocular assessments: for example, tests to measure at what point her eyes lose focus and see double and to measure eye movement and it's relationship to symptom increase.
I'd say, under normal circumstances, performance on scholastic assessments (quizzes, tests, midterms) would also provide a quantifiable measure, but I think it requires more than a half a quarter of production to really look at that.
How can we subjectively measure it?
1. How much is L doing and how does she feel doing it? L reports some pretty nasty symptom outcomes on almost a daily basis. BUT, she is also tackling more and more on 50% of the days. (I believe that that then impairs the other 50%, but there is only so much control I can exert over her when she is at school... ultimately, it is on HER to be intelligent and push it but not overdo it. That may be too much to ask of a highly driven, proud, intense 15 yo with an impaired brain.)
She has taken, and somehow passed, two of her four midterms she has to make up. She seems to be holding at a steady C+/B- range for her tests and quizzes this quarter (a full grade or more below her usual averages, but better than I'd expected...). She is doing these things on minimal studying, since focus and concentration and recall are all still very affected.
She has been all over the place swimming-wise, and what she does is very dependent on how beaten up she is from the school day. Since some days start with 7a physical therapy and end with tutoring, she is not always up for pushing through the pain and nausea to swim. She's actually swimming more than UPMC prescribed, plus doing all the other exercises and rehab.
She seems to be attempting more homework in a fairly timely fashion. She's got a draft of an essay due Tuesday, which will not be very fun for any of us (L puts a lot of pressure on herself under the best of circumstances... when words and ideas are not flowing... let's just say it could be a long weekend...). She's not taking as much extra time on assessments and such as I would a) like or b) think she would, in part because she is too damn stubborn to rest the way she is supposed to so as to stay below migraine level.
2. How is her demeanor? At times throughout this mess she has been hilariously funny (sometimes even intentionally so). At other times she has had the disposition of the mama water moccasin we stumbled on on the trail last summer who told us in VERY. CLEAR. snake language to back the hell away from her babies and move along, quickly. And sometimes I wonder if she is just completely emotionally flat lined. The moments of feeling very sorry for herself are amazingly few. But the moments where her frustration, pain, and/or boredom break out and punch me in the proverbial face are not all that few. I... think ... that the trend has been towards a brighter persona, but frankly I'm too close to the fire to really have great perspective on that one. I try to apply what I learned waaaaaay back when I was 7 or so and my grandfather was dying from cancer: don't get too excited at the good days and don't freak out at the bad days (if I had a buck for every time we raced like lunatics to NY because that man was FOR SURE GOING TO DIE NOW during the two years he was sick, paying for college would be a breeze...). But, honestly, it's hard not to get a burst of optimism on the up swings and even harder not to just sit down and cry in despair on the down swings.
3. Has she started talking about future goals (ie swim meets, classes next year) yet? No. Nothing concrete. She had hoped to be swimming enough yardage consistently and to feel well enough to go to our big meet in Nashville in 3 weeks. I told her this week that she is not going and, while it did NOT go over well, I think she knows I am correct. She is still so photo and phono sensitive that there is no way she can handle a 3 day prelim/final meet, plus two 8+ hour car rides. It would also be wildly insulting, in M and my opinions, to all the people busting their butts on her behalf at school for her to skip two days of school for a swim meet right now. And, honestly, it would be wildly unfair to her sister, C, who is excited for this meet and who should not have to spend her last short course championship meet before college in silence, which is how the car ride and hotel would be at all times were L to attend the meet.
She also does not have any goals academically other than survival. The young lady who holds herself to high standards academically is now more than happy to take a C. What any of this will mean for honors and AP classes in the future is unknown, and, frankly, irrelevant to me. It is not to her, but it is a sign of where she is that she is not actively talking about any concern she has right now.
So, that's the update right now. My gut says she is improving somewhat, but not in any sense quickly. I suppose she could live the rest of her life like this and ostensibly function fine to the outsider's eye, but I don't know how long she can push herself and deal with the miserable consequences of doing much of even simple things. Chronic pain changes people. It changes personalities, and attitudes, and even futures. We'll never have a control group to know what "might have been" had L not gotten these TBIs, and I try not to dwell on it (because it makes me want to puke, or cry, or punch something, or some unattractive combo of all three), but it is always there in the back of my mind.
That's why the support, encouragement, and kindness of people is so very important to L (and to me). And why the absence of it from some people makes me so. very. angry (yes, Captain Ahab, I'm talking about you...) I've always tried to be a thoughtful person and to keep other's situations in mind and reach out, even just by text, to check on them. It doesn't take much effort, but it does take awareness of things and people around you. And I guess it takes making the other person important enough to you. But, I digress.
Were it not for her school, we would be in trouble. Not any one person, but pretty much ALL of the people involved in this situation over there.
- the academic dean who came into our meeting having read my emails and ready with a fluid plan to help L catch up and keep up
- the head of the upper school who has been incredibly supportive and communicative
- L's fantastic advisor who has to be one of the most insightful, thoughtful, and caring people I know, who has spent an inordinate amount of time coordinating and communicating on L's behalf, checking on L, being proactive to help create an environment as conducive to L's success as anyone can create, and even bought an inspirational piece of art for L that eerily mirrored the quote on L's phone
- L's teachers who are a wildly diverse yet uniformly caring bunch (even the gruff one) and who, on a daily basis, say and do things that make me cry tears of thankfulness... from grading with kid gloves to telling her inspirational stories to making her feel very, very cared about.
-L's coach, who has been patient and kind and sarcastic and teasing and generally a whirlwind of making L laugh and feel visible, who will take the time to make up and text mini workouts for her on a Sunday morning or to brainstorm ways to keep her feeling like part of the team.
My parents, who always seem to find something cute or thoughtful to send down to help cheer L up, and my sister and her family, who always take the time to text or email just to check in and see how the day went. M's mom, who calls to check on L frequently. Some unexpected support and friendship from people who have dealt with major children-related health issues. Kind words from distant facebook friends, especially Bret, who has a special understanding of L's world. Without you all... I just don't know.
And of course, the ever steady, every loving, ever positive M (and the ever noisy, fiercely loyal and well meaning C, lol)... our family is as strong as it is because of you. Some men were born to be fathers.
To the people on Team L, I can never repay you guys. But if you ever need us, our family WILL be there.
Off to Pitt and UPMC in a couple of days. On we go.
02 February 2015
Blog name
Since so many people have asked, the blog name refers to this song:
https://www.youtube.com/watch?v=MPp4_e33o1M
https://www.youtube.com/watch?v=MPp4_e33o1M
Fun times are not had by all
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.
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.
Life on the PCS roller coaster
Our youngest daughter L incurred her third concussion of her young life on Dec 6th, 2014. Her first occurred Jan 22, 2010, while playing flag football. This is the last picture I ever took of her playing a sport she both loved and excelled at.... as near as we can tell, the boy in red hit her in the head behind her left ear and then her own teammate came in and hit her in the same spot.
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.
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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