
In honor of the number of posts coinciding with the calendar years (I’m up to 1978), now and then I’ll be writing about what life was like in the years that correspond with the post number. I’ll do some retrospectives, as well, but where I can correlate the years with past TBIs I’ve had, I’ll be writing about my injuries then.
In 1978, I was 12… then 13 years old, in 7th and 8th grades. My family had settled into the house where my parents still life, after relocating twice in the space of a few years. I was pretty much out of my element, but still carrying on as though I had it all together. At the place we lived for two years prior to our last move, I had sustained a mild TBI while playing at recess one day, and after that, I stopped functioning well. I withdrew into a shell — everything around me was overwhelming and confusing. My grades plummeted. I cut myself off from people socially, and in every sense, I was having a hard time. The lights were too bright, the noises were too loud, I had trouble understanding what people were saying to me, and I was tired and anxious a lot.
It was all just too much for me.
Nobody realized what was going on with me. Nobody knew how many problems I was having, because I wasn’t allowed to have the kinds of problems I was having. My parents and everyone around me basically denied that there was more going on with me than “character issues”, and I wasn’t allowed to be anything other than “normal”. I was expected to continue to play, to be social, to interact with other kids whose normal physical contact during games hurt me like they were pounding on me, to go outside in the blinding sun, and to be involved in all the activities that others did.
And by all means, I was NOT supposed to “sit it out” — “it” being anything. I was supposed to be involved, connected, social. Good grief.
The idea that my brain wasn’t processing things as well as it might have, and that I needed time and patience to put things together, was as foreign to everyone then, as any idea could be. As long as I was breathing and conscious, I was expected to step up and perform. No excuses. No exceptions. And so I did. I dove in and played along, even though things were not clicking as well as they might have.
The problem was, I had a bit of an impulse control issue. I said and did things that I really shouldn’t have. Mean things. Unkind things. Cruel things, even. And when I said and did some pretty sh*tty things to one of the new neighbor kids in the summer before 12th grade, I paid for it in my 7th grade year.
Turns out, the neighbor kids had friends — as in, a gang. And they were all bigger than me. And they were pissed. I was very small for my age, up until the summer I turned 13, so I was easy to push around. And all the bigger kids — a year ahead of me in school — weren’t afraid to do just that.
So, I spent my 7th grade year (1977-1978) in hiding, disappearing into corners and ducking into bathroom stalls, when I saw that gang coming. Needless to say, I didn’t make a lot of friends that year. There were some kids who reached out to me, but that was an awkward school year anyway, and I wasn’t up to it. Still adjusting. Still figuring out how to live my life without getting my ass kicked.
I got a skateboard, then fell off it because my balance was terrible, and I ended up in my Dad’s workshop, learning how trucks are put together. I grew my hair long and spent a lot of time in the woods. I read some, but I didn’t really understand what I was reading, so I made up my own stories in my head and I acted them out in solo live-action role playing scenarios. I was alone, and I liked it that way.
The summer of 1978, things changed dramatically. I started to grow. Nobody else in my family did it quite like I did, but by the time I was in 8th grade, I was 5 inches taller. I got my hair cut, I became more coordinated, and I found peace in my own head — at the top of trees I climbed to get away from it all.
I found my places where I could go to get away from everything, and when I went back to school in the fall, the bullies were gone. They were a year ahead of me, and they had gone on to high school. So, I was free to come and go and move about as I pleased.
8th grade was the year I started getting friends. Everybody at my school was very social, very community minded. And even though I tried to keep to myself, people pulled me into their groups to talk to them, to interact with them. Everybody wanted everyone else to be part of one group or another. Loners were not allowed, which I suppose is sometimes for the best.
I tried getting involved in sports, but organized sports with coaches and drills and regular practices had no appeal for me. It was too structured. Too demanding. I wanted to just flow… and to be good at what I did. I wasn’t very good at the team sports that were offered, especially basketball, which was way too confusing for me. I just couldn’t figure that one out.
But otherwise, things started to loosen up. I don’t have a lot of memories of my 8th grade year, and I was still keeping to myself for the most part. I discovered I had a quick wit and was a bit of a smart aleck, and while the teachers weren’t fond of that, my classmates were. I also discovered that I got along with everyone — from jocks to “brains” to “(pot)heads” to regular everyday folks who didn’t do anything out of the ordinary, but had jobs outside of school or were working towards their dreams.
I also became more involved at the church my parents attended. I was in a strange situation at church, because there was a really active youth program, but I was in between two “bubbles” of age groups. Rather than hold me back with the younger kids, my parents asked if I could be included with the older kids. I was still in 8th grade, but I could hang out with the high school kids. It really brought me along — and in an environment that was safe and respectful and principled. The other kids really took me in and made me feel welcome, and I learned a lot about how to interact with “normal” people just by being around them.
As far as anyone could tell, I was just shy. To them, I wasn’t impaired, I wasn’t having trouble understanding what people were saying to me or keeping track of conversations, and I certainly didn’t have processing issues, as far as they were concerned. I did my best to keep up, and I learned to keep quiet when I wasn’t keeping up. People just thought I was shy, and that was fine with me.
Eventually, I learned how to keep up. We had a lot of structured activities in the church youth group, which made it much easier for me to interact. If I was given a “thing” to do, I was fine. I still felt marginal, and I had trouble keeping up. But I figured out how to present myself in ways that disguised my difficulties. I learned how to pace myself and “present” in ways that were socially useful. And that worked out in my favor quite a bit.
I think that my experiences with being small and vulnerable and bullied made it easier for me to relate to a wide variety of people. I knew what it was like to be on the outside, to be made to feel not-important and insignificant. My mTBI experiences also shaped my view. I knew how it felt to be treated badly for no reason you could understand, to have more expected of you than you could reasonably do, and to lose faith in yourself completely.
I knew how all that felt, from a very early age, and I never wanted to do that to anyone else. If anything, I wanted to help others rise above that and really live their lives as best they could. I knew how terrible it felt, to be so vulnerable and afraid, and I hated the thought that anyone else around me might feel it. For me to feel it was one thing, but watching others in such pain as well… that was just too much.
In any case, I got through 1978, and it ended on an up note, with me learning that basketball and other team sports requiring speed and coordination were not my forte. I was starting to get on my feet again, after being spared the bullying for the second half of the year, and I was beginning to find my way.
It was exciting… thrilling… It really felt like things were turning around for me.
I knew how it felt to be treated badly for no reason you could understand, to have more expected of you than you could reasonably do, and to lose faith in yourself completely.”
I see this in my kid–and know it is one of the reasons she pushes to be in leadership opportunities. It gives her a chance to do the right choices for underrepresented peers. But she often feels isolated and different. And it is not easy with limited adult support within the middle school environment. Thank goodness for the teachers that give her a place to go at lunch what it is tiki loud, too bright, too difficult to sit amongst all the chaos. The administration sees my kid as successfully volunteering in activities the general population is not a part of–but they don’t connect the data and see how she thrives on leadership and volunteer activities and often, at this age and within this environment, there are few doing these activities and so it is actually a quiet place to rest, while it also builds her confidence and makes her feel like she is making a difference. They don’t see how she needs these to help her do more than just survive her mTBI, and they just feel she is faking it and doing only the stuff she thinks is fun. Administration doesn’t get how she needs those opportunities to escape the chaos and that doing is not always the same as thinking which can lead to worse headaches, fatigue, and balance issues for her. Sometimes she needs a rest, other times a confidence-builder to show herself she is still contributing and has valuable input, but always she needs opportunities—and this will help her keep faith and confidence in herself. It is so difficult in middle school anyways, the kids who thrive despite brain injuries are remarkable for their compassion and survival skills. It is as though they mature faster because of what they have experienced.
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Thanks for writing – and so we see how the human spirit prevails, no matter what. That’s completely excellent that your daughter steps up to help others, using what she knows from her personal experience. All the best to you and your daughter and everyone who helps her be all she can be.
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I was two years post injury in 78 and the difference between then and now is from darkness to the light!
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Tonya/BB, Reading these posts really help me in many ways. 1. I am not alone. 2. I feel a sense of achievement knowing that as a teacher, I at least was able to make a difference in those precious little lives like Tonya’s daughter. This is important as some days the feelings of a life so thrown off course due to status epileptus induced coma. still had some meaning somewhere. While I would not wish this “lost sense of self” and all prior meaning that was lost or at a painful distance experienced by many Mtbi survivors, I can say that this blog, tonya;s story and all those who know from the inside this invisible injury that gets misinterpreted so easily, have a real need in the world of so many. People see the effects and not the things themselves in the case of Mtbi. Best case scenario for many is that they are scene as arrogant, uncaring, immature, self-centered, rude, lazy or malingerers or even histrionic. Worst case scenario may be the sufferer of Mtbi is stigmatized,and seen as morally corrupt or demon-possessed. I wish that I knew an avenue to get in there and use my insights and experiences again, but seems as is the case of many with Mtbi, I have burnt too many bridges somehow and maybe just too tired. 11 years since a minor stroke, and I’m just not able to find my way. Let there be light on those who wake-up to a foreigner in their body who silently struggles to come to terms with an injury hey can’t even see.
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Well said – you are certainly not alone. I think perhaps this condition is the loneliest one of all. We lose so much, yet we appear to be so fine. I only wish … No, not “only” — I wish a lot of things, many of which are not going to happen. At least, not in my lifetime.
Ah, well.
Onward.
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It is wild to look back, is it not? Such a difference…
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Yes, I agree how important and valued this blog is to give people hope and a place to know others “get it.” It is not judgmental, but supportive. And it is so vital to have a place one feels connected and not alone–a place to rest and be authentic. This blog is a gift. Thank you for continuing to publish it.
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Thank you very much for your kind words. It really means a lot. I set out to keep this space to help ease some of the suffering that comes from being alone with TBI, and I’m very glad to hear it is helping some people. Thank you again and be well.
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