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With a Heavy Heart

June 28, 2010

For my loyal readers, I must begin with an apology for being gone for so long. And I continue with a confession of sorts. This blog was originally created from a desire to help others who may be living with brain injury to find hope and encouragement and to perhaps learn from the experiences of someone else in such a manner that one would not feel alone and may be empowered to continue on managing, living, and coping with the multitude of issues which accompany closed head traumatic brain injury and the possible long-term effects that come from repetitive concussions or blows to the head. That mission has not changed, but the experience that led me to that mission has.

It has been a tumultous spring and summer. I wish to clarify that the blog is now about me and my experiences and no longer am I speaking for or about specifics related to Todd and his condition. I made a very difficult and soul-searching decision this past spring to leave our marriage. It is not fair for either him or I to divulge details that led to this decision, but I can say that it is mostly attributed to the effects of traumatic brain injury and the inability to find support or miracles which would allow me to continue to be a 24 hour a day caregiver/researcher/supporter/wife and still hold on to an ounce of sanity or find a minute for self-preservation.

Therefore the blogs’ mission is still the same- to hopefully help others, although not in the same manner that I conceived when it began. There are wives, mothers, husbands, children, sibling, and domestic partners out there who are living in situations for which there are no black and white answers. I hope in some mannher to be able to support those individuals by relating to their circumstances, allowing a venue to vent and question, and to encourage above all self-care, safety, and personal support for those individuals.

My quiet morning was interrupted today by a news report tht Chris Henry (former Cincinnati Bengals receiver who died last winter) has been found to have sufferred from chronic traumatic encephalopathy. I had a mixture of feelings. First, in my heart I already highly suspected this news. It’s like a sixth sense when one lives with the repurcussions of brain injury, especially one which demonstrates symptoms of this disease. As soon as I heard the story of his death when it hit the news last winter, it all began adding up. The run-in’s with the law, drug use, rumors of domestic violence for which he was sorry after the fact and wanted to change. He obviously was working hard at facing these demons as he began to temporarily turn things around in the 2009 season. But when he snapped at a wedding planner’s office and took a moment of love and celebration that he and his fiancee were sharing and turned it into a quarrel that ended in stalking and violence, it was apparent that in an instant all logic was lost. Witnesses to the truck event described a person that was not the Chris Henry that most people knew. No doubt it was a person that even he didn’t recognize himself.

Media attention and research focus is now on how someone so young, someone who was actively playing, and someone who hasn’t taken a lot of hits could be so damaged. There are no easy answers to that question. I love football and don’t want to see it changed to the point that it is no longer the game that we have learned to love, but to watch these young men go onto the field and risk becoming subject to this brain disease makes me cringe. Lisa McHale (widow of Tom McHale-also found to have CTE) has stated that fans tend to forget these aren’t superhuman creatures that take the field in the name of sports and entertainment. They are human beings, men with parents, wives, children, dreams and aspirations. All aspects of their life are touched and changed when head injury occurs. In the recent Henry case, researchers are going back to try to examine the hits that may have occurred in high school. So just focusing on the NFL is not enough. Parents need to make certain that when their kids join biddy leagues, junior or high school teams or college that appropriate steps for safety and evaluation have been taken by the team to reduce the likelihood of ongoing trauma from head injury.

Secondly, my heart is heavy that families are suffering and disintegrating in the midst of these injuries and often don’t know why or how their life has gotten to this point. I liken my own experience to spending twenty years trying to run around and put out fires related to symptoms and behavioral issues, believing that as a therapist and an educated person who cared and had great love for my family that I could have some control over what was happening. This past spring I figuratively looked up and saw that the whole damn forest was on fire and there was only one choice, stop trying to put it out- it was futile. Run or risk losing myself and my children was the option. It was only after I left that burning forest that I realized how uch of myself was already destroyed, how much joy I had missed, how many options that I still yhad to left to recover and regain my life. I have struggled with how selfish that may sound to others outside of the situation, but they did not walk in our shoes. Only one who has been there can understand.

Elizabeth Ziegler wrote a piece for the Brain Injury Association of Washington entitled, “Reflections of a Spouse’s Group”. She very professionally and tactfully identified several factors which spouses face in this situation. These include the very foundations of one’s relationship being intruded upon, the loss of a marriage partner without a dath, the loss being clear to the healthy spouse but the brain injured spouse remaining unaware of the changes that have occurred, the fact that there is no resolution to the myriad of problems and situations that arise due to the head injury, the thoughts about long term care, separation, and the misunderstanding of family and friends, the violence that accompanies many different types of brain injuries, and the inabilityl to see that a divorce or separation can be a benefit of both partners in order that both can begin to rebuild what is left of their lives. The most important point made in the article is the final one in that there are those who even though exposed to the worset of sympotoms and depleted as a full-time caregiver, or those impacted as victims of brain injury – can regain their life and show extraordinary reslience to survive and thrive and successfully move on with their lives.

I would like to say that I hope no one ever has to be in a position to make such a difficult decision. I hope that no spouses lose themselves as significantly as I did. But I know that those hopes are not logical or practical. I know that there are possibly hundreds out there who have not a clue as to what is happening, who may be expending energy every day trying in vain to control something uncontrollable and who have no idea where to turn to get help or support. That is why my work, experience, and research will continue to be focused on advocacy, education, and support and prevention in regards to repetitive head injury. My marriage may have ended but my passion and deedication to this cause has not. My loyalty to other families remains as a priority.

I thank all of my readers in advance for the respect and privacy that I have received over the past few months. I also am very appreciative of being kept in thought and praye4r, and ask that you continue to keep Todd and the countless other victims of brain injury in your thoughts and prayers as well.

My prayers and thoughts go out today to the Henry family as they go public with the news of CTE. They will have to answer questions about events that I’m certain they would just as soon forget, and as they try to come to terms with the fact that the Chris they knew and loved was not the person that they saw at the end of his life. My prayers are that they can remember who he was before CTE took over, and love and respect him for who he was then. I hope his fiancee can remember him for the man she fell in love with. I hope his children will grow to love him as the father that he was trying so hard to be. I hope his mother will keep tucked away in her heart the boy who had hopes and dreams of just catching a football and making a living and in effect making a better life for himself and his family before brain trauma changed the course of who he would become and what they would inevitably have to live with.

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Women and the fight to prevent brain injury

April 13, 2010

Although not a personal blog, I could not pass up the opportunity to comment on the article appearing in the New York Times this week.

You can view it at: http://www.nytimes.com/2010/04/11/sports/football/11women.html

I applaud these brave women who have made it their priority to fight for those that they love and to make a difference in how we view head injury to protect the next generations. 

Football is said to be a man’s sport (thus the terms football widow’s).  But there are just as many female fans as males. AND for every male fan and male player there is a woman somewhere backing them up (be it a spouse, partner, mother, sister, etc.) 

Todd and I never had the privilege of being a part of the NFL family. Perhaps that may have happened if his paperwork to Kent State wouldn’t have gotten messed up. Perhaps it would have been a blessing, or more of the tragic story. Either way we are complete supporters of college and professional football. Our biggest argument is whether the better team is the Bengals (my pick!) or the Dolphins (his pick!).  But I do feel that we are part of the extended NFL family.  What has happened there as a business is not unlike what has happened in other business. 

Todd worked for over 16 years in the criminal justice field and in being an armored guard carrying around the money of big businesses and putting himself in harm’s way every day.  He received two of his concussions while on the job there. Once when a money cart catapulted a steel bar right between his eyes, broke his nose and knocked him out cold. Another time when he hit his head on the roof of the truck while climbing out in inclimate weather-knocked him out cold. He was a model employee. Never missed work. Was the only one of two employees that actually worked the blizzard a few years back. He was well liked by his customers and was more than efficient at his job. But as soon as the brain injury symptoms and health conditions began they turned their back on him. He now sits after 8 months with no health insurance from his company, no social security (in the first appeal process), no income and never even a phone call from his so called former “management” who supposedly cared so much for him. The bottom line is that people are dispensable. Out with one, in with another. In today’s economy the bottom line is business, where how much one brings in has to exceed what goes out. Therefore big businesses are reluctant to pay out compensation or take responsility for anything that may make them pay out anymore.  From a business standpoint it is perfect logic. To survive a business must make a profit.  But at who’s expense?

Women bring the sense of compassion and humanity into that equation. I don’t believe any of the women listed in the NYT article are against the NFL.  I don’t believe that any of them don’t enjoy the game. I don’t believe any of them want to see football banned or changed into some form of “fluff”.  I do belive that the female instinct of compassion and nurturance, the ability to see the big picture, and the fact that they are going to become the caregivers of these men who used to be so self-sufficient drives them to bring the attention to the forefront. This isn’t just a game. It is about people’ s lives. It is about their careers and what is left when the career or the life is over.  Somewhere in the equation “empathy and compassion” must figure in. It is quite possible that it will be through the power and voices of women that change may occur.

Ever hear the old adage “there is no fury like the fury of a woman scorned?”  Well, top that with there is no fury like that of a woman who watches a loved one suffer unnecessarily and finding out that no one cares.  Look out world, here we come!

It’s an old song but true, “I am woman hear me roar, I am strong, I am invincible.”

Let me add, “I am as powerful off of the field as my loved one was on the field”.  And in the words of my beloved Bengals chant “WHO DEY? WHO DEY?”

 WHO  DEY think gonna keep us silent?     No one.  We have a voice and we will be heard.  Thank you to these wonderful women who have initiated that voice!

Can I get a pill for that?

April 11, 2010

The brain, it’s so complex.  The injuries, even more so.  The repercussions of brain injury, a matrix so complex that to even begin to unravel it seems pointless at times. Compound brain injury with any other type of physical or emotional injury and the whole mess just multiplies in significance.   But there’s hope, there’s always a pill for that (SARCASM  INSERTED)!

Here’s the thing.  We have tried to use various specialists to treat segmented parts of the problem. A psychiatrist to treat the anxiety and depression, a family doctor to treat the everyday things like allergies, colds, etc. Specialists to treat pain issues, specialists to treat sleep issues, neuro docs to keep up on the spinal condition, brain injury docs to guide us and help treat repercussions of the injury. But the bottom line is we are collecting pills and not gaining any relief. Up to 20 pills a day now. And let’s not even talk about what all of the pills that are designed to help individual symptoms do to the already compromised brain. Let’s say there should be a side effect disclaimer for those with brain injury that take medications that says: WARNING-the use of this medication may or may not help the symptom for which it was intended but will guarantee that you will become moody, angry, have more impulse control issues, have interrupted sleep, either have a higher, lower or no libido, and probably won’t remember any of it because it will affect that too-but not to worry, your family, friends and caregivers will remember every excruciating second.

OK- that was a bit sarcastic and unfair, but it is what it feels like. 

I want a pill.   I want a magic pill that gives me energy so that when he tosses and turns all night or doesn’t sleep at all that I am oblivious to it or can just stay awake and not feel it the next morning.  I want a pill that can make me disappear when the behaviors begin to occur in public or with our kids and I just don’t know how to handle them.  I want a pill that reduces the adrenaline that courses through my body faster than my blood does.  I want a pill that will take all of this away for just 5 minutes while I catch my breath.  But alas, it doesn’t exist.

So what I do is get emotional energy from my family and friends. I meditate. I write. I advocate for others. I endure the tirades and behaviors. I stand beside him when he is in agony.  And I look for the lesson, what am I supposed to be learning here?  Most of all I pray that no one else has to needlessly go through life dealing with such a brain injury and that people will listen when others tell them to use seatbelts, wear helmets, and get concussions checked out.  I pray that there will be more doctors and researchers who will work endlessly to find ways to reduce symptoms and support families.  I pray those that are going through it can find a support network, can be educated as to what is really going on to cause the issues that they are facing, and that they have someone that will hold them while they cry and lift them up to keep going on. I pray that when the good days come that I am able to see the blessing in that and savor even 5 minutes of normalcy so that it will re-energize me and keep me going until that next 5 minutes come.  There is no pill for that.  There is only endurance, loyalty, compassion, and the grace of something or someone higher and bigger than us and our little brains that can provide that. If you are experiencing these kinds of distresses in your life, PLEASE don’t give up.  We are fighting this thing together. There is strength in numbers.  There is power in combined energy.  We need all of us to fight this battle and make a difference for others. If you are reading this and are a spouse or caregiver of a loved one with brain injury let us know you are out there. A simple “I’m here” will give us all strength to know that we are not alone, you are not alone. There is no pill, there is no magic. There is only us, but we are powerful.

Blessings!

No one said there would be days like this….

April 5, 2010

Maybe I have just been completely unprepared. I thought the more knowledge that I gained about brain injury, the more research that I read, the more professionals that I talked to the better prepared that I’d be. That’s how I learned about giving birth five times. That’s how I’ve learned about death and dying and grief.  I picked up some literature, I talked to others and I knew somewhat  the tasks that would lie ahead of me and what others found worked for them while in a similar situation.

But this is different.  Mama didn’t tell me there’d be days like this (as the old song said that she would).  No amount of preparation  truly readies or steadies me for the times that the tides of anger, irritableness, inability to pay attention and severe impulse control  creeps into our lives. No matter how much that I believe that I have it under control and can manage, there are instances that occur which remind me no one is in control here except  for a bunch of plaque covered neuro fibers of tangles that are receiving the wrong chemical stimulation and therefore precipitating the bad behaviors.

Is it only a coincidence that these instances seem to hit when I am at my worst as well? When I am exhausted and have a million other things in life that need attention paid to them, or when I have my own health issues sneaking in or haven’t gotten enough rest, or when it is a major holiday or family event and there are just too many needs to address? 

I still haven’t come up with a solution of how to deal with the landslides after the storms. Do we just say all of the time, “you have to overlook him he has a brain injury”, or do I reach for yet another pill to manage yet more symptoms?  Do I dare even utter the fact that at these times I consider getting in my car, driving as far as I can get and take on a new identity and leave all of this mess?  God forbid he would feel as though I would abandon him, that only reignites the fuel in the already unstable chasm that lurks within his skull. Do I live in denial and just walk away pretending that I don’t know him and hoping that others won’t put the connection together that he is with me? 

I began this blog by stating that we wanted to help others as well as help ourselves. I know there have to be many more of you out there that struggle with the balance of the good days versus bad. I try to tap into my social connections, I try to get extra sleep, I even have a prescription to help me sleep when I need to and can’t.  I throw myself into my work, I try to focus on the future.  Sometimes I just have to take respite. But inevitably those bad days always return, like a bad penny.  I know he dreads them as much as I do.  But what do others do to cope?  Has anyone else come up with ideas for what really helps the bad days be a bit more manageable. I invite you to please share your thoughts if you can.  We’re all here to walk through and talk through this together. I am not alone, and neither are you.

How did we get here?

March 30, 2010

Before I feel that I can actually blog about our daily, weekly, or monthly triumphs or tragedies it seems that a foundation must be led. How did we ever get here into the realm of brain injury in the first place?

For my PhD program I had to complete an assignment related to an oral history. I chose to write based upon the oral history of Todd.  I am including that today as a reference point as to how we got here. People will often say, “23 concussions?!  How does that happen?”   My personal belief is that the younger one is the more impact the injury can have on a young developing brain. As one grows and they continue to receive injury the damage begins to slowly rear it’s head, but typically not until someone thinks it’s just attention seeking behavior, a mental illness, a midlife crisis or just one’s personality.   I knew better. I watched my husband, the person that I knew disappear almost entirely right before my eyes. This is how it began:

          Todd was born at the end of 1965, in fact only a few days prior to Christmas.  He was born to young, inexperienced parents who lived their lives a bit on the “wild side” and most likely were nowhere near ready to parent children. Growing up in the late sixties and early seventies no doubt influenced many underlying values and beliefs. It was a time of “rebellion” and “doing one’s own thing”.  The world still seemed to be caught between the generations of conservative ‘Pleasantville’ lives to lives that were now being encouraged to be lived fully, no matter the risks.

          Todd’s parents soon divorced.  Dad fell completely out of the picture by the time he was a year old. Todd’s mother, although providing for him physically didn’t really want to be burdened with the day to day responsibilities of a child. She wanted to have fun, take risks, and “live life”.  The day to day child-rearing and stability for him was provided by his maternal grandmother who lived with him and his mother. However, I must note that over the years his mother grew to be a loving, caring and devoted parent.  She was simply too young to take on the responsibility of raising two fatherless boys.

          It was a bit difficult for Todd to find a niche in life.  Other young boys his age had fathers to take the lead. He did not. By the time he was ten his mother remarried and he gained a stepfather. But this did not end up being a blessing.  Rather it became a dysfunctional and abusive relationship with Todd becoming the brunt of his stepfather’s anger and power through much physical abuse.  What can a boy do when he feels powerless, is alone and angry, yet still has a foundation of values and morals instilled in him by his grandmother?  Todd found a forum to let go of his pent up “anger”.  He found a forum in which he was accepted by men who were like “fathers”, they were his Scout leaders and his football coaches.  They wanted to mentor, they wanted him to excel.  They celebrated with him in his accomplishments. He made new friends and he grew stronger, and faster.  The more talent that he developed the more desirable he was by his coaches, classmates, and even college scouts. It was football….it was the game.  It was his saving grace from a life that could easily have become one of delinquency or addiction. It became all about the game.

Cumulative Events

          Todd joined his first football league when he was in late elementary school. He was also a Boy Scout which he felt taught him character, responsibility, and gave him a sense of community.  But it was football that allowed him the opportunity for a few hours to excel, release anger, and be recognized.  Todd played biddy league during his elementary school years.

He was small and stocky but he was fast.

          He had definitely found the niche. He excelled and his talent continued to grow.  By junior high he continued to play and develop his skills.  The first concussion came in late junior high. He describes it as “taking a hit and not knowing where I was for sure but still remembering the plays so the coach kept me in. I didn’t remember my name for three days”. 

         By high school it wasn’t just a game anymore. It became about championships.  It became about scholarships.  It wasn’t just for the players, but the wins were also for the coaches. The coaches were respected above all.  But they were also ruthless if one wasn’t performing up to their standard.  Being grabbed or drug by a face mask was the norm.

        It was in a championship game that the first major injury occurred. He was knocked out cold. Yet one quarter later he went back and continued to play, even though he couldn’t tell them his own name.

       He was scouted by colleges.  He had a full scholarship offered to him. But a coach that had a vendetta conveniently forgot to file the necessary paperwork which led to Todd and another player losing their offered scholarships as well as any opportunity for college football. But after graduation he never lost the love for the game.

Long Standing Experiences

          Todd became a father at a very young age, eighteen years old. What does one do in the early eighties when they have no extended education, no job and a child to raise?  He joined the Army and spent a lot of time overseas. He was exposed to artillery fires and explosions.   He describes it as deafening and remembers holding his head and being disoriented due to the sounds and rumblings of the multiple explosions on several occasions.

           Even though he began a career with the Army he never lost his love for the game and continued to play “flag football” with a local community tournament. His body had aged, his mind had not.  He was still “the animal” (as they nicknamed him in high school) that he always was and took numerous hits.

          Perhaps it was the numerous head injuries already making an impact then.  Perhaps he wasn’t always thinking as clearly as he should. Perhaps he was more of a risk taker. But it seemed that one thing after another kept occurring.  Car accidents especially.  By the time he was thirty years old he had experienced more than a dozen concussions, both on and off the field.

Minor epiphany

          By 1989, Todd was ready to move up in his Army career. His next step was to be Hawaii.  But his young wife with a young daughter of her own would have no part of it. He declined and left his stint with the Army to become an active reserve member and come home.  Only home became an empty place.  His wife filed for divorce and custody of their child. His friends from the “glory days’ had moved on and were in college or careers of their own. 

         He met me and my three young children in late 1989.  He decided to step up and balance a family life, an Army Reserve stint and a new job.  As a risk taker his new job, not surprisingly was as a scaffolding erector.  The money was incredible and he didn’t mind climbing 40-100 feet or more in the air to construct the massive scaffolding. A war was brewing in the Gulf and he was anxiously training and awaiting orders to be deployed with his Reserve Unit.  But one hot summer day, while coming down from the scaffolding he lost his footing and fell forty feet to the concrete below.  It was unclear for a few days if he would live or if he would walk again. The outcome was a broken back (with three discs involved), a collapsed lung, a bruised kidney, and fractured feet. He hit his head on every steel wrung on the way down, although his safety helmet never came off. His glory days were now over. No more football, no more Army, and no more physical labor like scaffolding erection. Behaviors began, physical and mental.  Nothing was ever exactly right again-that was the epiphany.  Todd felt his life was over as he knew it.  Yet no one had mentioned brain injury.

Major epiphany

          Todd healed from his injuries as best as he could. He went back to school and received a degree in criminal justice. He worked as a jailor, a dog warden, and finally as an armed security guard.  Looking back someone should have seen it.  The signs were there: inattention to detail; domestic violence episodes; forgetfulness; car accidents; mood swings; etc.  But no one caught it. He entered therapy a few times in which he was diagnosed as being bipolar. But medications and therapy never really helped.

          Two summers ago he began experiencing physical symptoms which led to the diagnosis of herniated neck discs. He had surgery to repair these. He went into the surgery as one person and came out a stranger. He can no longer breathe appropriately due to the surgeon paralyzing a vocal cord and collapsing his trachea.  His health has deteriorated rapidly. His cognition had declined significantly.  Test after test; doctor after doctor.  It is finally discovered.  Not initially in him. For the “love of the game” he  his wife were both huge football fanatics.  An article appearing in National News just days preceding the 2009 Super bowl stopped them dead in their tracks. Eight NFL football players (post mortem) had been identified as having a condition known as chronic traumatic encephalopathy. It is a progressive, chronic brain deterioration brought on by numerous concussions over the years.  Plaque builds up in the neurofibrally tangles in the brain and leads to severe mental incapacity, early Alzheimer’s symptoms and eventual death.   It was as though the puzzle pieces were falling from the sky and miraculously falling into place and creating a picture of his life that now, as painful as it was, made perfect sense.

         Todd has been undergoing numerous neuropsychological tests and psychiatric assessments. All conclusions point to the diagnosis, although just as in Alzheimer’s only the symptoms can be addressed.  An official diagnosis cannot be made until after one dies.  Todd and his wife are keeping close watch on the results of research from  Boston University CSTE center who are examining the NFL player’s histories and brains as well others such as professional wrestler Chris Benoit.  Todd has joined the CONTACT study in which his brain and spinal cord will be donated to the University after his death to examine the effects that have occurred after over 23 consussions.   It has become a driving passion now, not to win the game, not to make the hits, not to impress the coaches and the fans; but to protect other young athletes who may be susceptible to this same injury due to numerous concussions beginning in even Biddy League. Proper headgear is imperative, as are appropriate teaching methods, rules, and sanctions. Education and knowing how to convince coaches to get injured kids off the field and into treatment is imperative. That has now become “the love of the game”.  To save the lives of others so that they don’t have to experience what Todd and his family has. 

Summary

         Identified themes in Todd’s life as illustrated in this autobiography include the need to be a part of a team.  When the family couldn’t be the team the football players and coaches did.  The drill sergeants and Army personnel did.  Safety was never identified as a theme and led to the demise, both in the Army and on the football field.  Excelling, pushing to the limits, being the star, doing one’s best; this was who Todd was.  Working hard and not making concessions for weakness were who he was and who he continues to be. The “love of the game [football]” has got him where he is.  The “love of the game [life]” is helping to push as hard and demand as much off of the field as he did on.  The goal is no longer points, recognition or championships.  The goal is quality of life, living to the fullest and protecting as many others as possible from this same demise through education, example and survival skills.

So, in a rather large nutshell, that’s how we got here.

Thank you!

March 30, 2010

Thank you for the numerous emails and posts that I received in support of this blog!  We were touched and surprised.

A special thank you for the support from Dr. Robert Stern, Associate Professor of Neurology and Co-Director of teh alzheimer’s Disease Clinical and Research Program and Co-Director for the Center for the Study of Traumatic Encephalopathy at the Boston University School of Medicine.  I do need to make a correction that the CONTACT study is through Boston University CSTE department and not the Sports Legacy Institute.  However accolades and applause to both organizations for the work that they are doing!

Teresa

My Mind, My Loss, My Life

March 29, 2010

Well, first blog post!  I have to clarify in the beginning that My Blog title is a take on Michael Franti’s song.  I heard it recently and it had such meaning to what was happening in my own life that I’ve kind of adopted it as my personal mantra.

Although I am a highly educated, highly qualified professional (a licensed counselor and a PhD student), this is a part of me that no amount of education or therapy can quite touch, although it can help make it manageable (sometimes). 

I met my husband in 1989.  He was in the military, played football and was the all around American 1980’s Macho Man!  I laugh about that now. People often ask what brought us together, and that was it – the laughing!  He could make me laugh, and that is a hard task for someone who has been forced to take life seriously for as long as I can remember.

Things began to change in our life within a few short years. HE began to change. We have had every psychiatric consult, medical consult, therapeutic consult, AA consult, and none really seemed to fit or answer the questions as to what was happening with him or in our life.  But in 2009 we began to understand. We sat at the breakfast table one weekend morning reading the news when an article about brain injury in the NFL caught my eye. As I read about the athletes who had experienced repetitive concussions, followed by dementia, behavioral issues, psychiatric issues and death it was as if the puzzle pieces were falling from the sky and assembling themselves right on our table.

Since then, only through the persistence that I have had to push for  have we received expert help. We know that he has a very severe and progressive brain injury. People often initiallydon’t know when they see him.  Sometimes if it’s a good day they don’t know when they talk to him. They think he is the wittiest, outspoken, and loving person that they have ever met. All of that is true. But the other side is what haunts us. The memory loss, the inability to recall words or events, the anger outbursts, the sleep disturbances, the balance problems, the inability to tolerate too much external stimuli.  It is a nightmare for him and for me.

We are totally grateful for the professionals who have stepped up to the plate and are working with us to get the best symptom treatment, the best diagnostic measures and the best support that we can.  We are even thankful for those professionals who didn’t have a clue and dismissed us as crazy, or experiencing “battered wife syndrome”, or bestowing upon him a massive pile of unfortunate and incorrect diagnoses. Without both sides of that spectrum we wouldn’t be where we are now. Lost, but finding our way-hoping to shed light to others who may be stumbling on the same path and are confused or don’t understand what is happening to their life-promoting research and advocacy about repetitive concussions and the long term impact that can occur-and providing hope that others do not have to be alone. My husband’s disease is no doubt chronic traumatic encephalopathy, although it cannot be confirmed until after his death. He matches the history and he matches the symptoms. He has donated his brain to the CONTACT study with The Sports Legacy Institute after his death. Even if he doesn’t have it (which is doubtful) we know that he has experienced significant brain damage due to his experience of at least 23 concussions or subconcussive blows to the head. There is no cure. There is no miracle drug or treatment, but there are people. People who love us and care for us and support us in the best ways that they know how-even at times when we don’t know what that is.  That is what we hope to be to readers/responders of this blog. YOU ARE NOT ALONE!  You may feel like you are, you may feel hopeless, you may be frustrated and exhausted.  But through all of our efforts we can help the thousands (literally) who will be impacted soon because of the previous ignorance of repetitive concussions in sports and most recently exposure to our deployed military service people in detonation zones.

Michael Franti sings:

” I try to fake it, but I can’t do it all the time. Try hard to break it but it was just a waste of my time….I pray to God to please show me a sign.  Has anybody seen my mind?  Walk with me now, talk with me now, be with me now and everything is alright.”

What started as an apparation of  insurmountable proportions, has now become our life. I saw the sign. Our experience could possibly be someone else’s hope, perhaps even their life. But without sharing it and walking and talking and supporting others nothing will ever be alright. I hope over the upcoming months to share our story in the hopes that it will bring education, emotional healing and belonging to others impacted by invisible brain injury.  I will do so through our own experiences and through the use of inspiration and suggestions for positive thinking.  Each day is a day to be lived, not to simply be endured.

I look forward to hearing your stories as well.