Brian Scalabrine keeps his head up

Great article at the Boston Herald… check it out

Brian Scalabrine has optimism in his blood. The Celtics forward is to positive thinking what Paul Newman was to acting and salad dressing – synonymous with the concept.

So when Scalabrine was diagnosed with post-concussion syndrome after suffering, in a horrible quirk, three concussions in a month midway through the season, he only thought about his return.

“I don’t feel he ever got down and out,” said his wife, Kristen Scalabrine. “He’s taken perspective of what he needs to do to heal. He wants nothing more than to be out on the floor. But I think he’s taking it all in stride.”

Read the whole article here…

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A Tale of Two Concussions – What went wrong, what went right

It’s Brain Injury Awareness Month, and this year there is special focus on sports injuries, especially concussions, among young/student athletes.

This is such an important topic… and it’s had such a vital part to play in my own life. I think it’s safe to say I would not be the person I am today who experienced the difficulties I’ve had, if I hadn’t had two concussions in high school. It’s my hope that teachers and coaches and other folks who are concerned about the health and safety of kids in school-sponsored sports will read this and become a little more sensitive to the issues and hazards that can accompany sports-related head injury.

My first school-sports-related concussion came in my freshman or sophomore year. I was playing flag football at the high school, under the supervision of a regular football coach who agreed to take on intramural players on Saturdays. We were having a great time — I remember the day was bright and crisp, one of those amazing Saturday afternoons in the fall, when summer is well over and everyone is all too keenly aware that winter is just around the corner.

We had a great time playing football… such a great time, in fact, that we all started really feeling our oats, and someone said they didn’t want to use the flags anymore. They wanted to play tackle football. Like everyone else, I agreed – I was totally into it. I was feeling strong and vital and full of bravado, and I wanted to take my play beyond just dodging and diving for flags.

I wanted to tackle. I wanted to hit — and be hit. And I wanted to play free of pads and guards. I wanted to get back to basics and play football the way God intended — down and dirty and full-contact. Amen.

Well, we had a grand time. I dodged some close calls and fell flat on my face a bunch of times, trying to take other kids down. Then, in a carrying play, when I had the ball tucked under my arm and was making a break into the open midfield, I got sideswiped by another player who was bigger and stronger and a lot more solid than me.

I felt the hit land hard against my side and shoulder, and I tried to spin away from it and keep running downfield, but my feet suddenly buckled underneath me, and I went down. I don’t recall whether or not I hung onto the ball. I suspect it popped out of my arms and bounced away, but it doesn’t really matter. When I stumbled and crumpled to the ground, it was like everything ground to a slow-motion halt, and I found myself looking at grass.

The coach who was keeping an eye on us came over to me and checked me out. They asked me if I was okay and if I could walk. I said, yes, but I had a hard time picking myself up off the ground. They asked again if I was okay, and I insisted I was. I was feeling really woozy and out of it. Rattled and echo-y. Like my bell got rung and there was a long, lingering ring to it. I was embarrassed that I’d gone down so easily, and I wanted to get back to the game and redeem myself. And for a while I did. But I played badly. I was off-balance and slow and foggy — a noticeably different player than I’d been prior to the tackle.

The coach kept asking me if I was okay, and I kept saying yes, but the longer we played, the more out of it I got, and they finally called the game before we could finish it. I was so disappointed! Disappointed in myself for having been such a wuss who couldn’t take a hit. Disappointed with the coach for thinking so little of me. Disappointed in the game that I hadn’t had the chance to really shine the way I wanted to.

I’m glad the coach called the game. In retrospect, they probably should have forced me to sit out sooner. But I was so adamant about keeping on playing, there was no telling me “no” unless the game was over.

And it was.

The other concussion I had was in an intramural soccer match. It was senior year, and there weren’t going to be that many more opportunities for me to just play. College was just around the corner, and I was keenly aware that my “childhood”, such that it was, was about to disappear on me. My days of careless abandon couldn’t last, and all through my last year of high school, I devoted every spare moment to savoring the taste of youthful abandon.

That included sports. I had a strong feeling that once I was out on my own, I wouldn’t have any more time to play sports, so I wanted to really go for all the gusto I could get, however I could get it.

Well, I went for it in that soccer match. And I think I played pretty well. But at one point in the match, I was either tackled, or I tripped, and the next thing I remember, I was on my back, looking up at the sky. I was kind of out of it… not quite right… and I lay there for a little while. At first, I wasn’t sure I could move, but then I did a sort of body scan, and I could feel my whole body, so that was good. I didn’t quite feel like I could get up, though, so I lay there for a little while longer, eyes closed, collecting myself. I didn’t want to be injured. I didn’t want to be hurt. I wanted to finish the game and have a good time.

I’m not sure how long I lay there, but before too long, some of the teachers came running over to me to see if I was okay. By that time, I had collected myself and was sure I could stand and walk and play, so I bounded up and reassured everyone that I was fine. They wanted me to sit out for a little while, but I refused. I wanted to play on. If I recall correctly, one of the teachers whom I really respected managed to convince me to sit out the game and let others play in my stead.

Even though I was antsy to get back in the game, I realized that I was kind of wobbly on my feet, and I needed to take a break, so I agreed to sit out for a while. It had sunk in that my bell had gotten rung, and I wasn’t much use to my team, anyway. Plus, the weird feeling in my head made me a little nervous, so I was a little relieved to have been taken out. After a while, I was allowed back in the game, but like with the football injury, I was slower, less coordinated and not as adept at handling the ball. I really struggled, which was embarrassing.

Those two head injuries — both of them knocking me silly and altering my consciousness in the process — came at different times and under slightly different conditions. In retrospect, I wish that the coaches and teachers in charge had been more adamant about me not getting back in the game right away — or at all. But in the first case with the football game, I was so eager — hungry — to play, that wild horses couldn’t have kept me from it. I think I may have had some recollection about that football experience, when I was dealing with the soccer experience. I was much more compliant — though grudgingly — with the folks in charge. I think also the nature of the games made a difference — in the football game, it was all about drive, all about pushing onward, where in the soccer match, it was much more of a thinking-game than brute force. I suspect that made a difference in my own thinking process.

One thing that made it easier for me to sit out part of the game, after my soccer injury, was the fact that I had other team members who wanted to play. If I played the whole game, my classmates wouldn’t have gotten the chance. In the football game, there weren’t that many of us playing, and if I was out, the game came to an end — which is what happened — and I didn’t want the game called on my account. I do recall making peace with the idea of sitting out of the soccer match by agreeing to cheer my teammates from the sidelines. My teachers specifically asked me to do that, I recall, so that gave me something to do while I was recuperating from my fall.

I suspect that folks who continue to play after concussions are often such loyal and dedicated team players, that they don’t want to let their team down. Or they feel some pressure of some kind — whether from their coach or their teammates or themselves — to stay in the game. Don’t let the team down. Be a part of the group effort. Those kids often have such a spark, such a dedication, such a devotion to their team that’s really refreshing, in our me-first, winner-takes-all, I’ll-get-mine society. But that dedication can work against us in the long run, if we’re not protected by folks who know better than us — in the school sports case, coaches and trainers and teachers who supervise student athletes.

I was fortunate to have been supervised by teachers and coaches who cared very much about my well-being and safety, and who managed to prevail on me to get the hell out of a dangerous situation. I was also fortunate to have the kinds of coaches and teachers I truly respected, so when it came time for them to outrank me, I could listen to them, hear them, and follow their instructions, even though I didn’t want to.

When it comes to protecting kids from the after-effects of sports-related head injury/concussion, there’s nothing like mutual caring and respect, when it comes to making and enforcing the right decisions. And there’s nothing like keen awareness of the dangers of unmanaged concussion, to hasten the decision-making and enforcing process.

So teachers and coaches, please learn all you can about head injury and concussion. And for the sake of your students and student athletes, don’t let them play injured. I don’t care what they say or how hard they beg or how far behind you are in the game. One short-term win for the team means nothing, if it costs a player the long-term loss of their cognitive, behavioral, and physical well-being… not to mention their future.

After creating memories, will NFL stars recall them?

The Minneapolis Star Tribune recently ran this story:

By RACHEL BLOUNT, Star Tribune

New evidence discovered by the Sports Legacy Institute shows that the repetitive head trauma suffered by football players often results in a brain disease called CTE.

Sunday’s Super Bowl created some of the most indelible memories in the game’s recent history. Years from now, fans will be recalling Santonio Holmes’ balletic touchdown catch and James Harrison’s roaring 100-yard interception return.

Whether the players will remember is a different story. Early last week, while the Super Bowl hype machine cranked out its usual merriment, the Sports Legacy Institute held a small press conference in a quieter corner of Tampa, Fla. The group, dedicated to studying head injuries in sports, unveiled new evidence that NFL players are at risk of developing serious brain damage from the effects of repeated head trauma.

In one sense, this hardly seems like news. With ever bigger, faster players crashing into each other Sunday after Sunday, with fans clamoring for tooth-rattling hits they can replay on YouTube, semi-regulated violence remains the cornerstone of football’s allure. But as we learn more about the alarming toll the game takes on its players, the NFL has been slow to act — leaving it to guys like Chris Nowinski to ferret out the truth.

“People are not taking this seriously enough by a long shot,” said Nowinski, president of the Sports Legacy Institute. “Active players don’t want to talk about it. They have a short window of time to make money in the game, and they don’t want to think what happens to the brain when they run into a 300-pound man at 20 miles per hour. And the NFL’s research is borderline pathetic.

“Our ultimate goal would be for nobody to develop [the brain disease] CTE, to figure out how to prevent and treat it. Our initial goal is just to give people a choice. Nobody knew that multiple concussions would lead to this.”

CTE stands for chronic traumatic encephalopathy. It used to be called dementia pugilistica, because it was primarily seen in boxers who had taken too many blows to the head.

Continue reading the article here…

I’m really happy to see people talking about this so frankly. I, myself, was one of those “jocks” in my youth who took a lot of hits and got up slowly afterwards… felt punchy and dull and foggy and “off”… but still had to get back in the game.

Now, years later, after lots of re-injury — thanks at least in part to my diminished risk-assessment skills — my life is harder going than it probably needs to be.

Everyone has problems, certainly, and I cannot use my injuries as an excuse to avoid living life to the best of my ability. But if you walk out in the rain without an umbrella, you can expect to get wet. And if the weather is cold and it’s flu season and you’re in the habit of shaking hands with sick people and then rubbing your eyes, getting sick is something you can reasonably expect to happen.

You can’t avoid every mishap on the face of the planet, but if you know that something has inherent dangers, it’s not unreasonable to seek to avoid it — or at least plan for what to do, in the event of a mishap.

TBI Symptom of the Day – Such trouble sleeping!

I had another rough night, two nights ago. Probably had something to do with my visit to the doctor, but then again, I haven’t been sleeping all that well, lately, anyway.

I was up at 2:00 a.m., drenched in sweat — I’m having a hard time moderating my body temperature, these days, as the seasons change. I’m either too warm or too cold, and when I get too hot, I sweat like crazy, when then soaks my pajamas and then I get chilled.

It’s just not good.

I tried listening to my guided imagery CD that’s meant to help me sleep, but it wasn’t working. I considered taking a shower to get all the sweat off me (sometimes the odor of my perspiration keeps me awake).. but then I opted for just changing my t-shirt and changing bedrooms.

The guest bedroom in the back of the house is quieter and smaller, and it feels sheltered. It doesn’t have much furniture in it; it’s pretty bare-bones, in fact. And it’s where we keep our extra stuff, like dirty laundry, shelves I have not taken out of the box and hung, yet, odd luggage that we can’t fit anywhere else, and a half-working multi-function fax-scanner-printer that bought the farm many years ago, but doubles as our outgoing fax machine (which we need surprisingly often). But the room has a nice feel to it, and it’s like a sanctuary to me when I’m not feeling well. It’s also where I take afternoon naps on the weekends, sometimes. It’s a nice room, the humble features notwithstanding.

I pulled a nice heavy quilt out of the closet, spread it across the bed, got my pillow, and climbed in. There’s something about making a “cave” out of my covers that makes me feel safer and more comfortable. I think the difference in the temperature in the room — my usual bedroom tends to be hot, and I’ve had the humidifier running to help avoid sinus issues — and the quiet in the back of the house really helped. Plus, it was a change of pace for me. I usually only sleep in the back guest room if I’m sick and I need to keep away from everyone.

I guess that wee hour of the morning was one of those times. Because I was sick. Tired and overtaxed and worried about my health and wondering if/when this TBI business is ever going to let up on me, and give me a break.

It could be that it never does. It could be, I have to keep dealing with the fallout — emotional, social, interpersonal, logistical, professional — all my live-long days. That probably will be the case. But on days like today, when I’m just so tired and I’m so fed up with having to navigate the world with different and/or diminished resources, I start to lose faith in my ability to cope.

I can cope, of course. I always have and I always will. I wouldn’t have gotten this far in life, with all those head traumas and all those tough experiences with family and friends and jobs and just daily living, if I didn’t have it in me to cope. I’ve been coping since I was seven years old, which means I’ve been at this for 36 years. But on days like today, when I’m tired and feeling like I’m falling behind in everything and I don’t know how I’m going to keep up, I start to lose faith.

Until I find something really great to perk me up. Like the fact that the speed of my broadband connection has improved exponentially, far beyond what I ever dreamed possible from my ISP, and I’m on good terms with my co-workers who also enjoy my company (when I’m absorbed in thoughts that perk me up, of course).

I think that if anything has spared me, in the years after my various TBI’s, it’s my continued sense of … well, adventure. And my tenacity. There’s a joke that with Alzheimer’s you get to meet new people every day, which (even by my fringe standards) is twisted and callous. But in a way, that’s how I feel about my own neurological issues. There is literally never a boring moment. If I approach each new situation with a sense of curiosity, even wonder, and I don’t get too hung up on the fact that I tend to screw up royally the first couple of times I try things… and I keep my sense of humor… and I just hang in there and keep trying, till I get it right… well, then, nothing is too terribly big for me to tackle (within reason, of course — let’s not go hog wild and get our hearts set on space travel or paying off the mortgages of every duped homeowner in America).

Some days, of course, I despair. I mean, it just really sucks when your brain doesn’t function the way you’d like it to — and everybody expects it to. It really sucks, when your own doctor backs away from you in alarm because they’ve discovered their assumptions about how well you can cope in the world are dead wrong. It sucks when your loved ones cannot deal with your temper, your memory issues, your mood swings, your difficulties remembering where to look for the note that’s supposed to tell you what to do today… And it really sucks, when you’re not sure who your friends really are…. and you don’t know if you have it in you to try to find out for sure.

But on the whole, I’m just so stubborn and hard-headed and too in love with life, to just give up and quit the game. Or even sit on the bench. I’m a viable, lively human being with a big heart and a lot to offer and a whole lot of life experience that others might find useful. Why should I live any less of a life than other people who haven’t gotten hit on the head and knocked around? Why should my injuries disqualify me form living my life to the fullest? They shouldn’t!

So long as I get enough sleep. Having enough rest is of paramount importance to me. If I haven’t slept, I can go off the deep end really quickly and start to make life miserable for everyone arund me. It’s the short temper, the extreme (someetimes violent) mood swings, the yelling, the tears, the inability to concentrate, the lapses in my memory over things that should be so simple… It’s all of it… it’s the almost childlike dependency that makes people wonder who I am, really… the reluctance to go out and be social, for fear that my tiredness will wear on me and make me edgy and gruff and put people off, and make me say things I regret and don’t really want to say. It’s the anxiety about any sort of social interaction — even with friends — that isolates me and ties me up in knots, since I don’t really have anyone I can just shoot the breeze with and bounce ideas off of. It’s the anxiety about people I know finding out about my tbi, when they had no idea before, and treating me differnetly, even though they’ve known me even in my most troubled times when my symptoms were really playing havoc with my head and behavior.

When I haven’t slept, I have trouble doing the most basic things — like remembering to zipper my fly. Like remembering to turn on my headlights when I pull out of the driveway. Like remembering a very important task I have been meaning to do. Like being able to understand people when I talk to them on the phone.

It seems like such a basic thing. How could sleep deprivation cause these issues? How could something so simple make my life so hard?

I’m not sure. But it does.

So, this weekend, with the support of my family (who are growing tired of dealing with a tired version of me), I will rest. Sleep. Take it easy. Read a good book. Write a little Draw a little. Just chill out. Take long hours to listen to my guided imagery CDs that I’ve been meaning to listen to. Spend some time doing some self-assessment and looking back over my past week to see what the pain points were. Tomorrow I’m taking time for myself, which is a rare, rare thing. And I’m going to catch up on my sleep, if it’s the last thing I do.

Nothing else matters, at this point. My priorities are clear.


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TBI Issues Tracking – How I Keep It All Together

For the past year, I’ve been working regularly at figuring out how to effectively identify and manage my TBI-related issues, both from the past and the present. I was keeping a journal on a regular basis, which was helpful, but there was something missing. I needed another tool to help me keep track of what was going on with me — in an objective and fairly brief way.

In my search for information, I paid a visit to http://www.headinjury.com and found their Journal of Daily Experiences. It was just what I needed! I printed out a copy and started using it, tracking my daily experiences and realizing that there was actually more going on with me than I had believed. Only when I really asked myself honestly if there were certain things going on with me — like irritability and anxiety — was I able to identify and address issues that had dogged me for decades, but I’d never been able to either identify or cope with in a constructive fashion.

I used the form from the website, but I eventually found it was too long for me to make sense of, and it was hard for me to get my head around finding each issue that was giving me problems. I needed something more organized — and something that gave me more space to write in. I had a lot to write, and I was having trouble fitting my words into the space there.

So, I copied and pasted the table on the web page into a word processing document, reorganized it with categories, and I changed the wording a little bit. Since it was in electronic format, I had plenty of room to type in my information. I didn’t run out of room.

I also wanted a version that I could print out and write on. Writing by hand is an important part of my regular recovery (it forces your brain to work the hand-eye coordination parts, as I understand it), and while typing into the word document was easier, sometimes I really needed to write the stuff down. Sometimes I needed to record things without a computer.

So, I created a PDF version — with a nice picture of a head with a brain on it, so I could keep track of my headaches, which are pretty much constant.

I have used my form(s) to record information both about my childhood (to see what problems I had) as well as recording information about my daily life. Both approaches help me a great deal in understanding my situation and formulating approaches. And I have written records of what works (and doesn’t work) for me in my daily life. Tracking my childhood experiences really helped me deal with the emotional baggage of what was a very challenging upbringing, and it helped me put a lot of my “badness” in a context I could understand objectively, without constantly blaming myself for my temper, my outbursts, my perpetual flipping out and beating up on my little brother. There was more going on with me and my head, than anyone knew. And I’ve paid a huge price, my entire life, thinking that my very nature was “bad” or “sinful” or “flawed” or “lazy” or “evil” … when so much of my behavior and performance problems read like classic TBI after-effects… and can be directly traced to them.

I wasn’t a bad seed.

I was injured.

And I never go the help I needed.

That doesn’t change the harm I’ve done over the course of my 43 years, but it does allow me to identify some of the true cause(s) of my problematic behavior and either take steps to make amends, explain myself to the ones I’ve hurt, take steps to make sure I don’t do those childhood things in my adulthood, and/or better understand what was really my fault, and what was TBI-related.

I also currently use the form(s) for day-to-day self-assessment. It may sound simplistic, but just recording my experiences on a regular basis has made a huge difference in managing my symptoms and issues. If I don’t self-assess at least once a week, I actually start to feel like I’m losing my mind… I feel like there’s something wrong with me. I feel defective. I feel useless. I feel like a total friggin’ loser. I don’t always fill out every single piece of the form, but I at least hit the high points, and that helps.

When I look at my issues in light of the tbi’s I’ve sustained, and I see that these symptoms are originating from an injury — not a character defect — it takes a lot of the pressure off. Self-assessing and tracking my issues reminds me that it’s not me that’s compromised (tho’ I must admit I have plenty of flaws that have nothing to do with tbi 😉 — it’s my injured brain that’s the root of a lot of my issues. And since I know the source of the problems, I can get outside myself and take steps to address the issues I come across.

And that makes all the difference.

I’ve uploaded the two files below for your use. I hope they help you as much as they help me!

Daily Experiences Journal (Wide) – Word Document

Daily Experiences Journal – PDF for printing and filling in by hand

Basic Facts about Traumatic Brain Injury – Video from www.brainandspinalcord.org

I came across this today and really enjoyed it. It’s short, concise, and to the point.

http://www.brainandspinalcord.org/media-center/FactsAboutTBI.html

I tried embedding the video in this blog, but the code the site generated wouldn’t “take”. So, pay a visit to the site yourself and take a look. There are other videos too that I found helpful.

A brilliant opportunity

I woke up today thinking that the TBI survivor community has a great opportunity before it — with the power of the internet and new electronic publishing technologies like blogs and forums and emerging print-on-demand technologies, we really do have the ability to offer each other the support that we cannot (and probably will not) find from the “system” that’s supposed to help us.

The medical industry doesn’t seem to have much interest in helping us address our issues in a consistent and substantive way.

All that some can manage to tell us is, “Every TBI is different,” without mentioning the myriad similarities so many of us have — and can benefit from hearing/learning about.

And frankly, there’s not a lot of money in rehabilitating someone who is no longer “able” to function at the same level they were before…

So many of us just get sent out to pasture. We fall between the cracks. And people who are in public positions to change that, don’t seem to care. I’m sure, on some level, they do, but so much is not known about this condition, and so many other conditions are more obvious and more easily tracked and more easily conceptualized… and are less frightening to the average person, that TBI just isn’t on the radar the way, say, cancer and heart disease are.

Now, I lost one of my little sisters to breast cancer, 2-1/2 years ago. I sat at her side and held her hand during her last hours of dying, so I’m certainly not opposed to cancer getting as much attention and funding as possible. And people close to me have had heart issues, so I’m all for addressing that, as well.

But doesn’t anyone have any attention to spare for TBI folks?

Perhaps not — but we do. We, the survivors. We, the family and friends. We, the ones with the most to lose and the most to gain. We can — and should — be there for each other and pool our resources and experience and strength and hope, for the benefit of everyone concerned.

Ultimately, the very society which doesn’t have much time for us, will ultimately benefit. But that’s not something I can prove right now, and it’s not something I can substantiate with numbers and metrics, so society at large will just have to wait and see how well we can rebound… and how well we can serve one another in the best way humanly possible.

An opportunity lies before us, to come together and pool our resources and offer one another help and support — largely in the form of information that’s distributed across the world wide web. Our info can go a long way. We can do for ourselves, what others cannot do for us. So, let’s do it!