Counting the Days While My Mind Slips Away
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Not long after the visit to Chicago, a film crew descended on our suburban Minneapolis home to shoot a music video. From the moment I started writing the song I knew it was going to be a video, and I wanted Karyn and the girls in it. Karyn never hesitated. She was on board from the beginning. Even though acting out the events of the song was hard for her, she nailed it. Of course, the entire film crew was in tears through most of the shoot, but that was to be expected. However, once the video was shot and edited and ready to go, I did not release it. Something in me said it was not yet time. I think I was waiting to release it when we released the album.
• • •
This progression, from the letter to the song to the video, fully opened my eyes to a truth that I “knew” but didn’t really know. As I wrestled with the very real possibility of losing my memories in the future, not just a few but all of them, I suddenly understood that these fragile memories that I always took for granted are the only things that connect me to the people I love. And that connection is what makes me who I am. My essence as a human being, everything I am, the person I’ve been, the man I hope to be in the future, all come down to my ability to remember. I am a living memory and without my memory I will cease to live even if my body keeps on functioning. If that day comes, I will be trapped in a coffin in my head with no way to get out.
As this realization hit me I came to understand I could not just sit back and wait for what may be inevitable. Nor could I retreat into the safety of my home with my family and cut myself off from the world while making the most of every moment with my wife and daughters. Believe me, that would be so easy, and I do now make the most of every moment I have with them. But making the most of this time means more than simply reading to them or wrestling on the floor with them or doing all the dad things I love so much. My girls need to see me set an example for them of faith in action. They need to see what we are to do when trouble and suffering strike our lives. And that’s why I chose to take two very intentional steps in dealing head-on with my brain injuries.
First, I have to speak out. As I said earlier, for three years, beginning right after the Brickman tour, I served as a spokesman for the Minnesota Brain Injury Alliance. In 2013 Rick Barron connected me to guitarist Billy McLaughlin, who introduced me to the American Academy of Neurology (AAN) and the American Brain Foundation (ABF). Billy had worked with both groups, which are actually connected to one another, and had even been featured in the AAN’s magazine, Neurology Now. Lauren Ross, the senior fund-raising manager for the ABF, contacted me about sharing my story. In the conversations that followed, the AAN and ABF learned I wanted to do a lot more than tell my story in one magazine article. I became a spokesman and an ambassador for the group.
Six years and counting after my last injury, I now realize that this issue goes far beyond football and the NFL. Brain disorder and disease affect one in six Americans every year, touching not only those who suffer traumatic brain injuries and disease but also their families. It is a silent epidemic. I believe the fact that I now find myself in this place is my opportunity to shine a light on the problem. I not only want to raise awareness, but increase funding to the American Brain Foundation for research for a cure. In neurology we believe that if you can find a cure for one disease, you will find a cure for many. I pray and believe that day is coming.
The truth that there is a possible connection between football, concussions, and brain disease has motivated me to take strong advocacy positions for the game that I still love and respect. I fight for current and former players’ long-term health. I believe that billionaires making billions off concussions should pay premiums on a long-term health-care plan that will provide assistance for any player diagnosed with brain disorder and disease. Let’s stay away from lawsuits and poorly structured settlements and ask the NFL to be the organization of integrity it has the potential be. More emphatically, I advocate for our children in youth contact sports. I would like to see state policies or a national mandate removing tackle football from schools until high school and, in return, follow the NFL’s example of creating a national first-through-eighth-grade highly competitive noncontact flag football league. We would remove seven years of head trauma during the most important developmental stages of a child’s brain, while at the same time allow our children to participate in a sport that can provide great life lessons.
• • •
On April 30, 2014, the AAN gave me the highest honor I have ever received when they presented me with their Public Leadership in Neurology Award for my work in advancing public understanding and awareness of neurologic disease. When I read the list of others who have received this award, I was floored. The list of past honorees includes former generals, vice presidents, and A-list actors and actresses, along with sports stars who were much more successful than I. The AAN flew me out to Philadelphia for the awards luncheon, where I had the privilege of delivering the keynote address. I just told my story. When I was finished this roomful of neurologists gave me a standing ovation.
Once I became a spokesman for AAN, my life as an advocate went to heights I never imagined possible. The NFLPA contacted me to see if I might be interested in appearing before the United States Senate Special Committee on Aging. I’ll let the irony of that statement sink in for a moment. Less than a week before my thirty-third birthday I appeared before a Senate committee investigating the impact of diseases and conditions normally associated with people forty and fifty years older than I and the connection of sports with those diseases. I was part of a four-person panel that included Chris Nowinski, a former college football player and professional wrestler who cofounded the Sports Legacy Institute at Boston University. After Dr. Omalu discovered CTE, Boston University took the lead in researching the disease, with Chris as its point man. The panel also included Dr. Robert Stern, professor of neurology, neurosurgery, and anatomy and neurobiology, and clinical core director of Boston University’s Alzheimer’s Disease Center. Dr. Stern is also one of the lead researchers into CTE at the Sports Legacy Institute. Finally, the fourth person on the panel was Jacob VanLandingham, PhD, director of neurobiological research at the Tallahassee Memorial HealthCare Neuroscience Center, and assistant professor of the Florida State University College of Medicine.
One person who did not testify before the committee but whose presence was greater than all the rest of us was Kevin Turner. Kevin played in the NFL for eight seasons, but now, at the age of forty, he suffers with amyotrophic lateral sclerosis, or ALS. His presence asked the question: Can the violence of the NFL lead to this disease? Kevin Turner passed away on March 24, 2016.
In the weeks prior to that appearance I had to write out my testimony. Using the piece I wrote for Neurology Now as my template, I wrote out a brief version of my story and talked about the uncertainty I now face as I look to the future. I also included a few lines from “You Will Always Be My Girls.” On the day of my actual appearance I did not read my official testimony. Instead it is entered into the record. But I did speak. The committee gave me four minutes to talk, and by four minutes, they meant four minutes. There’s a clock and a light that switches from green to yellow to red to make sure you don’t go over. I had prayed a lot about what I should say. I started off with describing the high point of my career, the 2006 Super Bowl. Then I contrasted it with the low, waking up on the field after getting knocked out in a Bengals’ training camp practice.
But the heart of what I wanted to say was summed up in a line that the newscasts that night picked up on. I told the committee, “It took losing my mind to care about my mind.” I then went on to talk about my memory problems and how I discovered them. Then I mentioned the letter I wrote to my family and the song and video that grew out of it. As soon as the meeting adjourned, news crews from ABC, CBS, and NBC asked me about the video. Prior to my testimony the story had been about the NFL and possible conspiracies in the league to suppress information about concussions. But now, with my appearance before t
he Senate committee and the vulnerability I showed, the story moved to a real person struggling with the lasting effects of concussions and the uncertainty they bring.
I wasn’t really prepared for questions about the video. I started praying, “Lord, what do I do?” I felt the answer in my spirit: it’s time.
Less than twenty-four hours after the Senate hearing, I uploaded the video onto YouTube and put links to it on both my Twitter and Facebook pages. I thought some people might be interested in seeing it, but I never expected what happened next. The number of views climbed and climbed every day. In two or three days we were up to around sixty thousand. I was amazed by the reception.
But the video’s impact had only begun.
Four days after I put the video on YouTube my wife and I went out to a movie for my birthday. We had just sat down and the previews started rolling when my phone buzzed. I had a message that the website for NFL on Fox had just posted my video. By the end of the night our number of views had jumped into six figures and kept climbing. The success of the video prompted interview requests with all sorts of news outlets. Rick Reilly from ESPN came out to our home and did a feature on Karyn, the girls, and me. All the while the video kept getting viewed time after time. To date, on YouTube, the video has been viewed 1.2 million times, with more views on other places where people have posted it.
I have to be honest: this was an incredibly emotional video shoot. As we filmed the scenes I couldn’t help but imagine the worst for my future. Watching Karyn go deep into her role for the music video was painful. I won’t forget the scene we shot when Karyn is looking through photos of our girls and me. We asked her, if she was willing, to imagine those memories being erased. She did, and it was beautiful and tragic all at the same time. The entire crew sat behind the camera and cried with her. As a speaker, I strongly believe that vulnerability equals connectivity. This music video was my opportunity to be completely vulnerable about my fears, praying that the song and video would somehow be used as a beacon of hope for the many in our world suffering from brain disorder and disease. The success of the video has given me peace because I know it has touched the lives of many who have watched it.
• • •
All of this brings me to the second response to my condition I want my daughters to see. Through my position with the American Academy of Neurology and all the interviews and video views and even this book, I’m speaking out, and I will continue to speak out for as long as I can. But I’m doing more than that.
All of my life I’ve been a competitor. I’ve been knocked down, and knocked out, but I always got back up and kept fighting. I think back to the first concussion I suffered in the NFL, where I was hit in the head in a helmet-to-helmet blow. Even as I lost consciousness, I heard the guy who hit me standing over me, taunting me. My head cleared. I jumped up. And I made the first-down signal, which brought the house down at the old RCA Dome. I wanted that player and every other defensive player to know that they could hit me as hard as they could but I was going to get back up.
The concussions I suffered on the field ended my NFL career, but that doesn’t mean I have conceded defeat to them. I am fighting back. How? First, I refuse to give up and lie down. Instead I get up every morning determined to make this day count. I treasure every moment I have with those I love. With every story I read to my girls, with every seemingly throwaway moment of laughter or tears or whatever the day may bring, I pause and reflect and grab hold of that memory with everything I have. I want my wife and daughters to know that I will never take them or our time together for granted. Ever.
But I am also fighting back by working to help raise funds and raise awareness for brain disease research. At the very end of the video for “You Will Always Be My Girls,” you see me get up out of the hospital bed and surprise Karyn and the girls. The camera then moves back to the hospital room and the IV hanging above the bed. On the side of the IV bag are the words “Experimental Drug.” That’s my prayer and something for which I work every day. I pray that a cure can be found that will untangle the tau proteins that wreak havoc on the brain and cause CTE. Unfortunately, right now this disease can only be diagnosed posthumously. After speaking to multiple neurologists and neuroscientists I learned there is hope to be able to diagnose CTE in a living person within the next ten years. If a cure is found, I will be at the front of the line, ready for them to try it out on me.
However, a cure may never come. That is why I am also fighting back through cognitive fitness training. In the summer of 2015, I entered into a strenuous twenty-week program that was harder than any NFL training camp I ever went through, well, at least mentally. I’m not going to lie. When this company approached me for the first time I was a bit skeptical, but I agreed to take their neuropsychological assessment because it was based on the Woodcock-Johnson, a battery of cognitive tests that are medically credible. The test itself took between an hour and an hour and a half, and it was tough and tiring.
The results proved my concerns. My long-term memory (after five minutes) tested in the seventeenth percentile, and my delayed long-term memory (after sixty minutes) was even worse, testing in the twelfth percentile. Strangely enough, these results gave me peace, because they validated my complaints regarding memory.
Now another miracle! After twenty weeks of sitting across from a brain trainer for an hour and a half per day, four days a week, I was ready for my postprogram evaluation. My trainer, Brad Olson, mentally pushed me to my limits, much like one of my strength and conditioning coaches would do in the NFL. I’m overwhelmed with joy to share that I tested in the seventy-eighth percentile for long-term memory, and, remarkably, in the ninety-eighth percentile for delayed long-term memory. This result was the most overwhelming, because it meant I will potentially be able to retain and store new memories more efficiently moving forward. I also showed significant improvement in my verbal comprehension and logic and reasoning. My whole athletic career was built around training my body, so it made complete sense to learn I can also train my brain. We all have the potential to train and strengthen our cognitive abilities, and if the results have the potential to improve our long-term brain health, then we should all take action.
Does this mean my past memory issues have been cured? Not at all. The jury is still out as to what these results mean for my long-term future. However, the improvement shows that the brain is like a muscle; it is plastic and it can be stretched and strengthened. For the first time in years I feel like my memory has improved, and you’d better believe I will keep on training. After all, once an athlete, always an athlete.
I still don’t know what the future may hold, none of us does, but I feel more confident now than I ever have. When I first discovered my memory problems I feared my life was over.
Now I know it has only just begun, and I refuse to take even a second of it for granted. If you’re someone who has gone or is going through some suffering in your life, please believe that there is always hope and that you have the ability to choose to have faith in it.
As long as my mind stands strong I have dedicated myself to being the best husband to my wife, Karyn, that I can possibly be, and a loving dad and example of a godly man to my little girls, Elleora, Katriel, Amy, and Haven. Realizing that my mind and memories are what bring relevance to my life has inspired me to be the best man that I can be. Memories are the essence of what makes us matter as humans. They hold our identity. What has relevance in our lives if we can’t remember it? Can we all grasp the importance of our mind and memories and no longer take for granted the most important things in our lives? If we can, then I believe we can all better ourselves. Pastor Wes Feltner, PhD, once said, “What we believe about our future directly impacts the way we live our lives today.” So, what do you believe about your future, and how will it change the way you live today?
To my beautiful family, I believe in a future filled with new memories and a love that has no condition. No matter what that future may hold, I promise you
will always be my girls, and I will always love you.
ACKNOWLEDGMENTS
THIS HAS BEEN QUITE A journey. I never set out to write my life story, nor one having to do with an injury that ended my football career, but providence seems to have a mind of its own, doesn’t it? I hope I never forget the call I received from my literary agent, Steve Ross. “Hi, Ben—this is Steve Ross from Abrams Artists Agency in New York.” I knew of Abrams through my endeavors in music and immediately thought the call was related to those. The conversation took an unexpected turn when Steve asked if I had ever thought about writing my story. “Uh . . . no, not really,” was all I could say. At the same time I couldn’t help but foresee where this line of questioning was headed. Steve had heard about my story from Mark Tabb, a New York Times bestselling author, and shared how much my story had impacted his life. He believed that, with the right writer, it could positively affect the lives of many others, too. I told him I was interested but challenged him on vetting a number of writers; Steve, however, calmly and strategically always brought me back to Mark Tabb. Well, I’m glad he did. I agreed to give Mark a call at Steve’s request, and it was one of the most engaging calls of my life. I was so concerned that I wouldn’t be able to find a writer who would truly connect with my life. I was involved in so many different things, and on top of that I had a unique past, having grown up as a pastor’s son and now being a dad with four daughters—how could anyone relate? Enter Mark Tabb. Long story short, Mark was a former pastor turned full-time author. He grew up in Oklahoma and was a huge football fan; he’d followed my career since I was in college and was, ironically, living in Indiana, where he’d watched my professional career unfold from its origin. Okay, here’s the best part: he’s not a father of four daughters. He’s a father of five daughters! It’s hard to explain, but it felt like I was talking to a combination of my dad and me. I knew within ten minutes that this was the writer for my story. I’m happy to say that both Steve Ross and Mark Tabb are now, first and foremost, my friends and advocates. Thank you, Steve, for believing in me and helping my story become a voice for hope. Mark, you are so talented, and I thank God for your wanting to share my life story and for so eloquently putting it on paper. You are a stellar example of what it means to be a committed husband and father, and I appreciate your friendship.