Illinois HS Senior Hoops Player Speaks About Life After Concussion

By Mikaela Broling

securedownload-225x3001Everyone has a story: Enlightening stories, depressing stories and even stories of faith. Each and every one of them have deep feelings and memories attached to it. In reality, they are all different, whether it be how theirs started or ended. I have not always been so keen on sharing mine, but I have come to learn that it is a very important one, one that will make people think, wonder how I keep going, but most of all it is a story of my strong faith and lets people know there is always a light at the end of the tunnel. It may not seem relatable, but look in between the lines, everyone has been lost at some point in their life, broken, fearing what is to come next. I have learned to surpass that, and share with people how it is even possible to overcome those obstacles.

My story began the evening of January 24th, 2012. I was a 15 year old girl, who loved  sports! I was a 3 sport athlete, with a total love for  playing soccer! However, on the night of the 24th I was playing a basketball game. That very unpredictable night. I was one of the most aggressive defensive players my team had, and I gave nothing short of my best every time I went out on the court! The team we were playing that night, was a very rough team. Physically and mentally. As the game goes on into the evening, the score board goes back and forth between both teams. After scoring a shot, the score board was now in our favor, and we had to get back on defense. I was in charge of marking their point guard, who had very quick feet and intentionally set me up for the biggest fall of my life. Running to keep up with this crazy fast girl, not aware of where I was headed, I ran straight into a massive post player. I ran right into her shoulder, she was much taller than me and my right temple slammed into her shoulder. After that hit, I freefell to the hard gym floor, it was the back of my head that hit hard against the gym floor.  I’m told it  was the kind of hit that silenced the gym.

Dazed and confused, I tried getting myself up off the gym floor. Miraculously, I did not go unconscious. Eventually my coach ran out to help me off the floor and to the bench. I went into a little panic attack on the bench, because I was so confused. Knowing something was wrong with me, I tried to stay calm. Surprisingly, the trainer at the gym dismissed me as nothing was wrong, just a bump on the head and to go home and sleep it off. No concussion, nothing. My mom on the other hand, was not going to settle that easy, so off to the emergency room we went. I remember feeling so tired and more worn out than usual, and just uneasy with my surroundings in the ER waiting room. Once admitted, the ER doctor came in for the evaluation, and sure enough I was diagnosed with a concussion and told I will deal with post concussive syndrome over the next few weeks or months.  I was told school would most likely become a bit difficult. That night we did not realize the severity of this hit, only the next few mornings would start to bring answers.

My dad was gone on a business trip that week, so my mom and siblings were home with me. In the morning when I woke up, I was in my moms bed with her, rather confused and very quiet. I remember seeing my mom first thing when I woke up, and asking her why I was in bed with her. She said I had a rough night, and thought it was best that I slept in her bed with her.  That day I slept pretty much the whole day and night. My mom said I wouldn’t eat and really didn’t want much to drink.  The next morning I awoke in my mom and dads bed again. My mom just sat next to me talking just a bit to me.  There was a phone laying next to me by the bed in the morning, so I was looking through it, and scrolling through pictures. I was looking at all these faces, they had no names to me. They were all strangers to me. My cousins, friends, boyfriend and even family.. I did not know them or understand why.  I think my mom was just as confused as me. We went through all the pictures together, and none of them rang a bell. This realization was the first of many to come.

Throughout the week, more and more things came about that I did not remember. My recollection of colors, food, geography, family members, friends, animals, places, my past, holidays, seasons, even my own boyfriend. All of those were lost in my head somewhere. My short term memory was horrible, and my long term memory seemed to have went completely missing. Another unusual thing that happened was that I became completely literal. I did not understand the concept of joking, innuendos or sarcasm. Also, cartoon characters and animated shows or movies tended to scare me. I really thought that all of those things were real. Still today, when I become tired, I am more apt to be quite literal and skittish around animation. The most difficult thing though was not knowing who my Dad was.  He  had been gone on a business trip and when he came back I just had no idea who he was. When he started crying, I could not help but to cry either. I mean, after all, I was not sure what I was crying about anyway . He kept reassuring me, and said that all will be ok and I would heal.  As scared as I was, I just kept trucking along.

A week after my accident, I went in to get an MRI. I had a CAT scan in the ER, which both turned out to be normal. My head injury has stumped my doctors and neurologists, as well as, my Neuropsychologists. They say they have never seen a case like this before with so much memory loss . I went on with my regular life as much as I could. I stayed home for a few days from school until I thought I was ready to go back. We did not realize the fatigue I had until I tried going back to school. My school was very understanding with me when it came time to go back. I was on half days of school for the rest of my sophomore year and  3/4 of my junior year of high school. Now a senior, I am able to go full days. I am on a 504 plan, which enables me to get accommodations with school work and tests and gives me extra time on any assignments I need. For about 4 weeks, I knew nobody’s names at school. No teachers, friends, classmates, nobody! My boyfriend, Adam, was the one who helped me with everyone’s names and helped me find my classes. I had to re-meet him several times in order to remember who he was. To this day, he still shares many memories with me that I do not have.

For 6 months to a year after my concussion, I battled  headaches and sometimes dizziness.  When I am tired, I  still struggle with lights and noise. I also have a difficult time now with crowds. The fatigue I have is  like no other fatigue I have experienced before and still struggle with it daily. Naps were a normal thing to me, and they still are. After school, I would snuggle up in bed and sleep for 4 hours when I did half days. Now that I am consistently going full days, every so often I take a day off of school to catch up on my sleep.

As of right now, I am going through neuro feedback, and seeing if it will in fact help my fatigue. I have been resting and going along with my normal life as much as possible.  I  am still getting some memory back here and there. I am hoping to get back my energy like I had before, but I also know that coming out of a traumatic brain injury like this, I will certainly not be the same girl as before. No one could possibly be the same as before. I would say all of the colors, food, animals, geography, people, etc. that I have come to know in these past 21 months, has all been taught to me, or I have learned on my own. As of right now I am still learning these things, I  definitely forget a lot of these common topics, but  I am trying to learn them still. I am not about to give up on my struggle though. I really do love life! There have definitely been times where I could have easily given up, but my faith in the Lord and in myself, along with the love from my family and  boyfriend Adam has kept me on my feet. I have learned not to be embarrassed when I make remarks, or do not understand something, because God has a plan for me. God has a special plan for each and every injured mind.  I Know His plan is an amazing one.  In the book of Jeremiah it says, “Heal me, O LORD, and I will be healed; save me and I will be saved, for you are the one I praise”(17:14). This is why I keep going, this is why my experience will be shaped into a story of faith and encouragement for others and also myself. There is always light when things seem dark.

Press Release: New Interactive Feature, “What Brought You Here?” Launches Oct 13th

FOR IMMEDIATE RELEASE:

The Knockout Project Announces New Interactive Feature, “What Brought You Here?”

Belchertown, Massachusetts – September 23, 2013 – The concussion education website “The Knockout Project” is taking a leap forward in terms of relevant content delivery.

Since founding The Knockout Project in late 2012, former athlete and multiple concussion sufferer Jason Fraga has been working on shaping the content that the fledgling website would provide. Said Fraga, “I had a vision for the void that The Project would fill, but the truth is, I knew from the start that this would be a work in progress. It was important to me that we would rush to get the website online – even if it were skeletal in the beginning.”

Realizing the potential of site metrics, Fraga came up with the concept of “What Brought You Here?”

“Immediately, it became clear from referrer stats that questions typed into search engines- which ultimately delivered people to our website- were a valuable and sometimes heartbreaking commodity. People in the throes of concussion aftermath are often desperate for answers- answers that are sometimes lacking with medical professionals in their area. We’ve been down that road already and can offer insight. To that end, “What Brought You Here?” is a short video segment produced by members of The Knockout Project Round Table (our Board members) that gives us a way to address our audience in the most personal terms: by answering their questions directly on a weekly or bi-weekly basis. In addition to scouring search engine terms, we’ll post a link where users can submit their questions to us. Knowledge is a valuable commodity, and we aim to provide it to people on a number of fronts: Prevention, possible treatments, as well as an outlet for people to get their stories off their chests. All are important in our view. The bottom line is that we’re very excited about the possibilities that this initiative brings.”

ABOUT THE KNOCKOUT PROJECT:

Founded in November 2012, The Knockout Project was an answer to an athlete’s struggles while dealing with the aftermath of Post-Concussion Syndrome. Those struggles manifested themselves in a number of ways: Physical, Cognitive, and Emotional. That athlete was determined to educate others so that they didn’t make the same mistakes that he did- in the hope that others would avoid a similar fate.

To know more, visit: http://www.theknockoutproject.org/
Follow us on Twitter: https://twitter.com/#!/knockoutproject
Like us on Facebook: https://www.facebook.com/TheKnockoutProject

Contact:
Jay Fraga
Inbox@theknockoutproject.org
www.theknockoutproject.org
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If You’ve Just Suffered A Concussion, This Is The Most Important Video to Watch, Understand, and Apply to Yourself.

I can’t even begin to tell you how many of us wouldn’t be in the positions that we’re in if we had this knowledge at the time of our injuries and had acted on it. And, ACTING on it is important. Planting yourself in a dark room is boring. But, you can hack it for a few days. It’s certainly better than the alternative, which is having the injury drag on for weeks, months, or even years. Parents, resist the urge to give in to your kids because they’re “bored” of sitting still. You don’t need the financial burden and time drain that continuous treatment will bring. And, you certainly don’t need a broken kid. Do it right the first time, and don’t screw it up.

Doctor Robert Cantu with the most important two minutes you can spend:

 

Jay Writes: Dear Diary.

Dear Diary:

My life feels like a race. But, it doesn’t feel like the kind of race that I’m used to being in.

Everything about it seems heightened, urgent, and rushed. I’m in a race to regain the old me. I’m in a race to spend as much time with my family as I possibly can. I’m in a race to educate others about concussions, so that they don’t have to experience what so many of us have experienced as a result.

I’m haunted by the prospect that while intense physical therapy seems to be bringing my visual and vestibular symptoms to a livable (not normal; just, livable) state, that there is still something happening inside my head that is degenerative in nature. I’m a prisoner to my own thoughts, and they are constant. I have always been very analytical in nature and highly sensitive to noticing nuances; differences in every aspect of my experience, whether in terms of subtle sounds that my car was making, a change in weather, or the shift in a person’s body language. That feature has always been my internal alarm mechanism, and it has never done me wrong when it came to illuminating issues. But now, I find that I use it to discern changes in my cognition, and to take notes of it. I can’t help but to itemize those things and extend them out to their logical conclusion in a mental equation.

Our intellect is our lowest common denominator. It’s all that we have. The prospect of it slowly going away is frightening. Each instance of cognitive fog: forgetting words, not knowing why you’re in a certain place, seeing friends in public and not recognizing their face until just after it’s clear to them that something is amiss is terrifying. Seeing the look on my Wife’s face when she sees me struggling to remember something that I wanted to tell her is crushing. And, I think that it all adds up to something. Or, at least, that’s my gut instinct.

For a person whose gut has always served them well, this is a scary road to walk on.

Fall sports are just starting up again. Already, my inbox is on fire from people who’ve just been diagnosed with a concussion or the parents of kids with one. And, as a result, I guess that I have gotten what I’ve asked for: an opportunity to warn others about the pitfalls of not taking concussion seriously as well as not understanding how to deal with the aftermath. Understanding those things while I was racking up concussions could have made an incredible difference for me and I can’t even to begin to tell you about what the regret of putting yourself and your family in a situation like this is like. If you are reading this, I am dedicated, however, to you never finding out what it’s like.

I don’t know where this goes. But, I hope people will listen.

Jay
The Knockout Project

Multiple Concussion Sufferer From PA Details Her Experiences

{ Editor’s note: Isabella’s experience highlights the most common (and nerve-wracking) bullet point that many of us have learned as multiple concussion sufferers: That it takes virtually no effort at all to re-injure yourself once you get the ball rolling with concussions. We know that the effects of concussions are cumulative and that each one increases the likelihood of the next one- even from a slight bump. Living under that sort of cloud day to day is stressful and very difficult; especially, as you are working hard to recover from current symptoms.   – Jay }

By Isabella Cantafio

isabellaI never knew what a concussion was until I got my first one in a soccer game in 6th grade. I headed the ball in the air with another player and fell back whipping my head off the ground. I remember feeling in a blur and sat out for about 5 minutes before returning into play. By the end of the game my head felt like someone was hitting it with a hammer and I was on a merry go round ride. My next concussion came in 8th grade from hitting my head off the gymnasium floor leaving me unconscious for 2 minutes and sending me to the hospital.

Nearing the end of my freshman year, I was in a water park accident that caused a concussion and forced me to end my 9th grade year early.

A few weeks after the accident (never being officially cleared by IMPACT test) I was playing soccer with some friends and got kicked in the head causing another concussion.

Over the summer until the start of my sophomore year I had intermittent headaches, got easily dizzy and overall didn’t feel right. I didn’t think it was from the concussion but when school started I found it hard to concentrate, my grades started slipping and the headaches just got worse.

Two months into the school year, I passed out, hitting my head and was unconscious for almost a half an hour spending 3 days in the hospital under observation for seizure activity. After the accident, I had double/ blurry vision for several months, fainting spells, problems in school, and severe migraines that seemed to never leave.

Doing vision and vestibular therapy for 5 months things started to improve until fooling around with some friends I got pushed back jarring my head causing many of my symptoms to come roaring back.

I was forced to end my sophomore year early bed bound for 5 months unable to watch tv, text or do anything that would stimulate my brain. It was horrible to say the least.

Playing basketball my junior year I got hit in the head causing another concussion.

A few months after that, I got a knee to the head and blacked out for several seconds. Not much force was needed to knock me out at this point. The summer leading to my senior year I had moderate improvements in my post-concussion symptoms and was really looking forward to senior year and looking into college.

Just when everything started improving, things spiraled downward quickly, and I got back to back concussions, 2 weeks apart. The latter of the two was a car accident that caused a neck injury and more concussion problems. I’ve been in and out of the hospital trying to get the migraines under control, doing more vision and vestibular therapy and cognitive exercises to help with short term memory problems and concentration issues, sleeping problems and mood swings.

The one thing out of my experience I have learned is to never take anything for granted. You may think you are “invincible” and you can play through any pain. But with concussions it is your brain, something you can’t replace, you need to take care of it.

No game is worth years or possibly a lifetime of problems. I can never play sports again, I still have many problems from my injuries and my college plans are on hold for now. But sometimes in life the road that everyone else is taking, isn’t the road you are supposed to be on.

Take every day one day at a time and never give up!

 

BMX Racer From California Speaks Out on the Effect Concussion Has Had on Her Life

{ Editor’s note: I first became aware of Sara the night that she crashed racing in Oregon. I got a message from a concerned mutual friend (a Nationally #1 Ranked BMX Racing mutual friend, at that) saying, “Hey, she popped up online and doesn’t sound real good- you should try to get in touch with her right away and encourage her to get checked out/rest/etc.” –  which I did right away. Despite that, Sara is now writing her story for us and has unfortunately become “one of us”.  – Jay }

By Sara Dooley

saraApril 14, 2013. This is the date I will always remember, my life now separated out to “before” and “after.”  If you lose a limb, the disability is tangible to the general population but when it is internal, people chose not to believe. It was the Sunday main even at the Great Northwest Nationals. I had gate 4, my favorite, and knew I had it in the bag to podium.  The gate dropped and off we went, Girls 36-40 Cruiser class. The riders to my left and right were trying to sandwich me in, and I was not giving up my line. I never saw the rider from the outside cut over to the inside until it was too late. I hit her back tire as she passed and off I went, head first into the dirt. About 2-3 hours later is when my memory came back. While I did not pass out, I did have amnesia. My memory came back when the arena was clear and the vendors were taking down their areas. No matter how hard I try, that time is not coming back to me.

oregon

Sara: Out Front in Oregon

After much pushing and prodding from my friends, I went to the Emergency Room that night. It seems I had broken my helmet where I hit and they were concerned there could be bleeding on the brain. The Doctor ordered a brain scan and thankfully there was no bleeding. They referred me to see my Doctor as soon as I made it back home and explained the severity of a concussion.The next morning I made the 12 hour drive home. Little did I know that my life had transformed.

After seeing my primary Doctor I was put in “isolation” as I call it for a week. No work, phone, TV,  lights, loud noises, or reading-just sleep. I thought this would be hard, but with my head hurting so bad, I wasn’t complaining. I literally slept for a week and then went back to work. This is when I realized something wasn’t right. I had a hard time concentrating, jobs that I could breeze through prior, were now difficult. The more I thought of how to process something, the more my head hurt. I still had a black eye and part of my head was bruised so people understood. Also, the injury was “new” so it was understandable and they accommodated the injured me.

As time went by and the bruising healed, my productivity reached the normal level, my personality came back (for the most part) people expected me to be back 100%. What they didn’t/don’t understand is I am not. It has been almost 4 months since my accident. I have to sleep more than most. Everything I do-no matter how simple, tires me out. Most just a little, but sometimes it takes me a week or more to recover. My brain is fried and sleep is the way it heals. It is like being drugged, no caffeine or anything will keep me from having to sleep. People don’t understand that sometime just a day at work wears me out, or spending the day at the track. Simple things that now leave me needing a day worth of sleep to get back to the new normal. My body can no longer regulate heat like it should. I have to use the air conditioning or drink gallons of ice water if I am going to be in higher temperatures. I have a hard time concentrating. I forget words and how to do things I have always known how to do. I have what I call “the wall” when I am trying to explain something. I can see it-and then the wall comes up and I cannot put it into words. The ability is just not there anymore. If I am tired I slur my words, or have a hard time pronouncing them. I can’t handle bright or flashing lights, they are a circuit overload and short out my brain and stop the ability to think in a logical way. I can’t track fast movement, like in action movies. If the music is too loud, it makes my head hurt. I used to listen to my headphones daily at work, but now I have a hard time listening to music and working at the same time. It feels as though it is too much for my brain to process at once. While these all may seem minor issues, they were not how I was before the accident, and people don’t understand there is a valid reason I cant explain something, can’t remember how to do something simple.

In response to my new shortcomings, people sigh, they roll their eyes, they tell me to knock it off. I’m to the point where I don’t explain anymore, I just apologize-for not being the person I was. This is never something someone should have to do. I find I don’t go out much, beyond the obvious of loud music and bright lights I just don’t want to have to explain myself or why I need to go home early because it was too much. I avoid conversations because I know I am lousy at participating if they become detailed. It has changed my life and trying to accept that, and learn how to live with the changes is hard. Every time I go to the Doctors they move my recovery date. It started out as 1-2 months, then 2-3, and now 6-12. They say what hasn’t come back or healed by the 12 month mark is most likely going to be permanent. They want me to accept this and be prepared for it. Every day I think of what might stay and what may heal-which I think I can live with more than others. I wish I didn’t have to think this way. I wish I could express myself and gain understanding from others, not impatience. But again, I look normal…so how can anything be wrong?

 

Jay Fraga Interview With Mike Carruth of BMX News

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On Tuesday, July 23, Mike Carruth of BMX News spoke with Jay Fraga about concussions in sports and why Jay started The Knockout Project. You can download or stream the interview here:

http://www.blogtalkradio.com/bmxnews/2013/07/24/bmx-news-announcers-tower-live–july-23-2013-1

CT Lacrosse Player’s Four Year Journey Through Concussion

{ Editor’s note: I’m excited to include a “success story” here on The Knockout Project, as most of the time I’m hearing from people during what are some of the worst moments of their lives. The attached story features Marianna Consiglio’s battle with post-concussion symptoms. It was written just before Marianna and her parents agreed to a revolutionary surgery performed by Dr Ivica Ducic  to ease her suffering- a surgery that, by all accounts, has been very successful. The link included below is to a recent ABC News story that featured Marianna and detailed her surgery experience.
You can take these two pieces as a “before and after”, if you will.

http://abcnews.go.com/Health/doctors-surgery-relieve-lingering-concussion-pain/story?id=19095339

Once things settle down for her, I think we can look for Marianna to write her story here from start to finish. – Jay }

Marianna’s Story

By Erin Leo

mariannaFour years ago, if you had asked Marianna Consiglio what she wanted to be when she grew up, she would have said she wanted to be a teacher.

“I thought it would be fun to be in charge. I was a little bossy when I was younger,” she says, laughing as she recalls her earlier desired profession.

However, if you were to ask her now, the sixteen-year-old would firmly tell you she wants to be a doctor with a concentration in sports medicine, something she never would have considered before her injury.

Nearly four years ago in April of 2009, Marianna stepped out onto the field to play goalie in a youth lacrosse game. Halfway through the game, after already making half a dozen saves, Marianna stepped up to block yet another shot from a girl less than five feet away from her.

She blocked the shot; but it came with a price.

The loud crack as the shot rebounded off Marianna’s helmet made the whole crowd cringe. The force of the ball caused her head to snap back against her helmet, doubling the impact of the hit. Within seconds she was dizzy and had a throbbing headache, but she continued with the game. Afterwards, however, she knew something was very wrong.

“By the time I had gotten home, I was throwing up and could barely see,” she said.

Her mother rushed her to the emergency room where she was diagnosed with a concussion, not an uncommon injury in sports.

“At first I didn’t think it was that big a deal—a lot of kids get concussions and recover without significant issues,” said Laura Consiglio, Marianna’s mother.

However, three months and three different neurologists later, the symptoms from the concussion, specifically the debilitating headaches, had not subsided, and she was referred to Boston Children’s Hospital Sports Injury and Concussion Clinic. An ImPACT test revealed significant cognitive impairment in her visual and verbal memory scores.

“The doctor at Boston told us that the younger the athlete, the longer it generally takes for them to recover from concussions,” recalled Mrs. Consiglio. “He prepared us that it might take up to 12 weeks for her to fully recover, which I remember thinking no way!”

As it turned out, Marianna and her mother are now wishing it had really only taken 12 weeks.

For a year, doctors monitored her cognitive function and prescribed several different medications intended to ease the headaches. By March 2010, she was deemed recovered cognitively, but the headaches had yet to go away. Marianna was then diagnosed with Chronic Daily Migraine. Two years later in 2012, she has since seen seven different neurologists, tried five different naturopathic remedies, and been on countless medications. Still, she experiences near constant headaches and has not gone more than six days without a headache since her initial injury four years ago.

Now, the daily migraines she experiences turn everyday into a battle.

“The hardest part about having the headaches for so long is always missing stuff with my friends and family, and always feeling like I have to explain it to them,” she says.

As a junior in the middle of her high school experience, not being able to hang out with her friends or attend their birthday parties can be hard. It’s a luxury most other students take for granted.

“Although she has occasionally been out to the mall with friends and a couple of Sweet Sixteen’s, she has also missed a lot of social things that go on,” says Mrs. Consiglio. “She has turned some invitations down or left parties early; she doesn’t get to see her friends as much as most others her age.”

Her condition has impacted her family as well. Having gone through all of her ups and downs with her, they hate seeing her in so much pain and are frustrated at the lack of a cure or aid so far.

“It is so frustrating to see her in pain and not be able to do anything to help her,” says her mom. “Or more like, everything I do to try and help her is futile.”

Her older brother, TJ Consiglio, feels the same way.

“Seeing her in pain every day and having trouble helping her get through it is the hardest part,” he says. “You just feel helpless, and that’s the hardest thing to cope with and overcome for all of us.”

However, the biggest obstacle for Marianna and her family so far is school. Though she has a 504, a medical form that allows her to miss school and assignments without consequences, she struggles daily with make-up work and dealing with teachers who don’t understand her condition. She has not been able to attend a full month of school since her injury four years ago.

“I’ve had to come up with totally different school strategies,” she says. “I used to procrastinate to the last minute to start and finish my assignments, but now I know I have to do them right away when I feel good because I don’t know when the next headache is going to come on and prevent me from doing it.”

She goes to a local tutor regularly and has had to finish classes over the summer to receive credit for them. The school has also rearranged her schedule so that she has a free study the first and last period of the day in case she has to come in late or leave early.

“She gets very stressed out about missing and late assignments,” says Mrs. Consiglio. “She is determined to do well and wants her grades to reflect her true ability.”

Despite the many challenges, Marianna has been able to keep up in school and has been able to complete all of her requirements, even if they are just handed in a little later than usual.

“She always has a ton of make-up work, even over the holidays and the summer,” says her brother, TJ. “But she works so hard and always manages to get it done.”

Even more impressive, is the fact that this year she was inducted into the National Honor Society in her high school. NHS requires all of their inductees to have a cumulative GPA of 3.5 and maintain it throughout the rest of their high school career, a feat many normal students cannot achieve, proving just how hard Marianna has worked to continue doing well in school.

After all, she needs to keep up her grades if she wants to pursue her career path of becoming a doctor, and following her dream to help others with similar conditions.

“I’ve missed a lot of school, but I also know that many people wouldn’t be able to keep up their grades like I have, so I am even more determined to become a doctor in sports medicine,” she says. “I know how bad athletes want to get back on the field.”

Perhaps most impressive of all, however, is that despite the amount of pain she is in daily, she doesn’t let it dampen her spirit, and does everything she can not to let it stop her from being a normal kid. She also credits her family, for always being there for her.

“Each one of my family members are my biggest support system,” she explains. “I love them all and couldn’t do it without them.”

Her family continues to hope for a better tomorrow right by her side.

“I am so proud of her determination,” says her mom. “But she is sick of being sick, and I keep hoping that tomorrow will be better for her. I promised her we would not stop until we found a doctor to cure these headaches.”

Even with the many set-backs she has encountered, Marianna has always maintained a positive outlook and believes that she would not be the person who she is today had she not been injured so long ago.

“It has certainly taught me some of my most important lessons in life,” Marianna reflects. “I’ve missed out on a lot, but I’ve also come to realize who my true friends are and what really matters to me.”

The quote she now sets her life by and draws strength from is the one she thinks best describes her whole situation.

“It’s not about waiting for the storm to pass, it’s about learning how to dance in the rain.”

Southcoast MA HS Senior Soccer Player Describes Her Experiences With Concussion

By Lindsey Santos

santosOn October 26th, 2010, I received my first concussion. During a competitive soccer game against one of our conference teams, I was jumping up for a header, pulled down, and then deliberately kicked in back of the head twice, blocking the third kick with my hand. I stood back up on my feet and knew something was wrong. I tried to “shake it off” as any other athlete is taught to do, but when I started throwing up, I jogged myself off the field. When I told my parents I had a headache later on when we arrived back home, they took me into the emergency room to get checked out. During that visit I was diagnosed with a concussion. Already knowing somewhat about concussions, I figured it would be a “normal” two weeks of headaches. Little did I know that two weeks would turn into three months.

I had headaches every day, and I constantly felt tired and confused. My goals had to be set aside to take care of my health. Not being able to go to school caused me to fall behind my peers in the classroom and on the field. After having my concussion for about four weeks, my doctor recommended I go to see a Sports Medicine Specialist at Boston Children’s Hospital. There, I took my first Impact Test. Even though I did well on it, my symptoms clearly showed that I still had a concussion. I followed up every month with him basically just asking questions about how I felt and keeping track of the symptoms. Finally being cleared back to sports in January of 2011, I returned to play basketball for my high school.

After only being cleared fully for a week and half, I received my second concussion. Someone set a pick on me and just completely elbowed me in the process. I immediately knew that I had a concussion because when I got up, I was dizzy and my vision was blurred. But, I stayed in the game because I didn’t want to accept the fact that it had happened. My coach took me out of the game because I was clearly “not right”. The trainer checked me out and held me from going back into the game. Waking up the next morning with a severe headache forced another trip back up to Boston Children’s Hospital.

It was just the same routine as last time- as if I was never cleared. This time the specialist advised that I come up with some sort of agreement with my teachers for help in the subjects that I wasn’t doing well in. My school principal developed a 504 plan that provided me with accommodations to get extra time to take tests and hand in projects. Some of my teachers weren’t aware of my condition though and some major assignments were counted against me. I felt like I didn’t have any control over my life as if a carpet was ripped out from under me. I started to write and draw to help me through my PCS (Post Concussive Syndrome) recovery. During all of this I was also losing my friends. When they would be out having fun, I was stuck at home with a headache crying myself to sleep. They would get mad when I told them I was going to stay home because I didn’t feel well. They started to believe I was faking this concussion to get away with things, like quarterlies, homework, and get-togethers.

After another three months had passed, I was cleared for contact sports again. I was feeling good and healthy, even with two concussions under my belt. Though things felt altered, I was learning to cope and accept it. I could not let my two concussions defeat me any longer. I had to face these obstacles head on and regain control of the things that mattered most in my life. Even though I am still dealing with headaches three years later and break down every once in awhile, I strive to make a difference. I introduced the Impact Test to my school and even though the athletes hate taking them, I know it can make a difference for the better. I also help other students in school who have a concussion. I guide them, and I’m most importantly a friend to them. I don’t want anyone to go through what I did. Going through these challenges has certainly had a large impact on my life. They have prepared me for other bumps in the road that I will face as I live the rest of my life.

“Healing Heads”- Massachusetts HS Junior on Her Concussion Journey

{ Editor’s Note: At the ripe old age of 17, Madeline Uretsky has become a prominent voice in concussion education. She was the subject of a Boston Globe feature story on concussion in January of 2013. Her story has also been highlighted by the Brain Injury Association of Massachusetts, The Salem (MA) News, and a number of concussion-centric websites and blogs. She has spoken publicly on concussion, most recently at the Boston Acquired Brain Injury Support (BABIS) Walk. Madeline is truly a concussion education warrior after our own hearts, and she is an important voice. – Jay}

“Healing Heads”

mad1My name is Madeline Uretsky, and I am a junior at Bishop Fenwick High School in Peabody, MA. What used to be known as “getting your bell rung”, and being told to just “shake it off”, are no longer accepted ways of dealing with concussions.  Thanks to modern research, we know now that concussions are in fact, brain injuries, and must be dealt with as such. They are to be taken seriously, regardless of the severity, because the short term and long term effects can be devastating. Ignoring the symptoms and the mistreatment of them can have lasting effects to the brain, as we have learned from the many NFL players now suffering from the many concussions they sustained, but ignored, while playing. Any subsequent hit to the head before the prior concussion has healed can have profound effects on the brain as I have learned. I am just one of the many thousands of people who have suffered a severe concussion, and whose life has been forever changed by it. You never think it’s going to happen to you.

On October 11, 2011, while playing in my soccer game, I was tripped from behind while sprinting for the ball, fell on my forehead, snapped my neck back, and fell and hit my forehead again in the same place in a matter of seconds. I knew something was wrong immediately, but I had no idea how serious it would be. My symptoms did not become apparent until about 48 hours later. I could not sit up, tolerate any light at all, I was tired, and had an excruciating headache. It has now been a year and seven months since the moment of impact.

I spent the first 3 months of my concussion lying in bed at home, in a dark room, and on complete brain rest. This brain rest meant that I could not watch TV, use a computer, phone, draw, text, read anything, or do any sort of homework or exercise. In other words, I could just sleep, lie in bed, and not go to school.

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At this time, my symptoms were numerous and very high on the symptoms scale at the doctor. I had severe headaches as well as up to 165 very sharp pains all over my head every day. I also had severe whiplash, disorientation, memory loss, extreme fatigue, dizziness, balance problems, trouble following a conversation, ringing in my ears, and I could not tolerate any bright colors, light, or noise of any kind. My sleep at night was erratic and filled with nightmares. You would never know this by just looking at someone with a concussion because they do not have a cast like a broken bone. The brain is still injured but on the outside you look fine.

I went to my pediatrician weekly, and my neurosurgeon monthly, for a symptom evaluation. On a scale of 0-6, I had all 5’s and 6’s during those three months of brain rest; I could not believe how awful I felt. I started going weekly to a massage therapist who practices a type of acupressure that helps brain injured patients. I liked going because it was a way to relax myself, even though it was painful. I continue to go on an as needed basis, and also do many other kinds of alternative therapies that have been helpful such as chiropractic, herbs, speech therapy, balance therapy, eye coordination exercises, and others.

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As these weeks turned into months, it became apparent that there was no end in sight for me. I was isolated from my friends and my school, yet I felt so awful that I accepted that there was just nothing I could do about it, except rest, and wait it out. I had visitors, on a limited basis, but I did not even feel well enough to enjoy myself. I was unable to engage in any kind of conversation, and I would randomly fall asleep. There were times that I could not even remember that I had visitors.

I missed all but five weeks of my sophomore year and I am still not cleared for physical activity other than walking. I did catch up with my schoolwork over the summer of 2012, and now I am on a full schedule at school but with accommodations such as extended time on tests. I took my SAT test without accommodations and that was a challenge. I did some extra preparations to help myself concentrate and have the energy to last the entire test. Overall, it went well and I always wonder how I would have felt during the test if I had not had a concussion. Recently, I also had a setback that kept me out of school for a week after a re-injury to my neck from a visit to the physical therapist. What makes my concussion so severe is that I still have all of my symptoms over a year and a half later, just to a lesser degree. In addition, I have learning disabilities now that I had never had before. Focusing, processing new information, multi-tasking, and comprehending orally are some of them. I am doing much better than I was, but I still have a ways to go. I am hoping to one-day wake up symptom-free.

When you sustain a serious brain injury, your life, and the lives of those around you, are greatly impacted. What you once knew as “normal” no longer exists, things that you could count on for yourself no longer exist, and what you have to do to achieve, and accept, a “new normal”, is a difficult process, both emotionally and physically. I could no longer do any form of physical activity at all, yet I was accustomed to playing sports every day of my life. Before my concussion, I was a very involved and active student – my freshman year, I played soccer, hockey, and winter and spring track.

I decided early on in my recovery that I was going to do whatever the doctors told me, and I was definitely NOT going to let this concussion get the best of me. It’s not who I was before my injury, so I wasn’t going to allow myself to become that person. I was open to any kind of treatment that could help me. As I started to feel a bit better, I began taking baby steps to regain my life. I started to use my computer to reach out to others, as well as to learn more about my brain injury.

Along the way, I decided that there must be other teenagers out there suffering as I was, and who perhaps don’t have the kind of support that I have, so that became my mission – to help them. Life as a teenager is difficult enough, so just imagine being a teenager with up to 165 headaches per day, living in a constant state of fogginess, having memory loss, unable to carry on a conversation without physical pain, sensitivity to light and noise, and generally not being able to live the life I once had.

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Speaking at the Boston Acquired Brain Injury Support Group Walk in Jamaica Plain, October 2012

Returning to school as a student with a brain injury is a very scary proposition. Will people look at me funny? Will they ask me a lot of questions? Will they think I’m faking? – after all, I look fine. These were the many questions that I had before I returned.

My school was so supportive with my accommodations that I decided to write a chapter for a book about concussions in sports, and I have been a regular blogger about various brain injury topics, for several websites. I was the speaker at the 10th annual Brain Injury Walk in Boston in October, and the Pediatric Brain Injury Conference in November. I was featured in Bay State Parenting magazine, the Salem Evening News, and the Boston Globe as well. I will continue my crusade for concussion awareness, because I feel that this has happened to me for a reason, and that is my mission to help others.

As long and difficult as my road to recovery has been, it has also been extremely rewarding. I have been able to mentor, counsel and befriend many other kids with concussions, and this has made me feel so much better. The most important advice I can give is to stay positive because things improve over time. Brain injuries are a work in progress, there may not be a change on a daily basis, but improvement will be seen. Just because life is different than it used to be, it doesn’t mean it isn’t as great – you just have to find a way to make it as great, even if you have to do it differently.