Why I’m Donating My Brain to CTE Research

It’s difficult to describe the moment you “come to” after suffering a concussion. It’s almost like waking up from a really bad night of sleep. You feel dull and detached, but still present in the most basic sense.

Present was always good enough for me. Present meant I could still play.

It was October 1981, I was in my sixth season in the NFL as a guard/center for the 49ers. We were playing the Cowboys at home when I was knocked unconscious on the field during a game for the first time since I became a pro — but the third time since I had started playing back in high school.

The first voice I heard when I regained consciousness was Jim Klint, our team doctor.

“Randy. Randy? Randy, are you there?”

As soon as I could make out Jim’s words, my first instinct was the same as any other football player’s would have been: I looked for my helmet.

My last memory before everything went black was of D.D. Lewis’s knee pad. He was a Cowboys linebacker, and I had gone low to bring him down when his knee crashed into my helmet. I felt the hit — and then I felt nothing.

As I looked around for my helmet (which the training staff had wisely hidden from me), Jim kneeled right in front of my face and said, “Don’t look at the scoreboard, look at me. O.K., if you can tell me the score of the game and how much time is left, you can go back in.”

Without hesitating I told him it was 24–7 in the third quarter.

In reality, we were leading 45–14 with three minutes left in the game.

My best guess is that I experienced about 20 or so head injuries during my professional career that would have been classified as concussions back then. By today’s standards, with the NFL’s current concussion protocol, I think it’s safe to say I probably experienced dozens and dozens.

Most instances generally weren’t as dramatic as the one in the game against Dallas. There were many times when I’d make contact during a perfectly normal play and then my field of vision would suddenly narrow, which meant that I was basically out on my feet. That’s a feeling I think pretty much anyone who has played football can relate to. The fact that I didn’t feel the need to sit out after getting my bell rung is also probably something any football player can relate to.

Football is a game that makes you question your own limits — because it’s always pushing you past what you thought they were. Mentally and physically, you are constantly being tested. It’s not just about how fast you are or how hard you can hit. It’s also about how much pain you can withstand and how much effort you’re able to give when your brain is telling you that you’ve already given everything you can. That’s why so many people fall in love with it; it’s certainly why I did. So if you’re a player, and you’re in the moment and all your adrenaline is flowing, the last thing you want to do is back off. Sitting out for a play feels like failure. Unless you’re legitimately injured, you never want to show that you’re hurt.

For a long time, players sacrificed their bodies without fully understanding the risks they were taking on. They got hurt, and then they kept their helmets on for another down because that’s what competitors do.

But at what cost?

My last game was on January 22, 1989 — Super Bowl XXIII. The NFL didn’t have any concussion-related research in their hands until the following decade.

When it was first announced two years ago that the NFL was going to pay out somewhere around $1 billion to settle a class-action lawsuit filed by former players who accused the league of covering up what it knew about the link between playing pro football and chronic traumatic encephalopathy (CTE), I took note. What fascinated me most wasn’t whether the actual sum of money was sufficient — that’s another issue entirely — but rather, one of the figures highlighted in the settlement.

Out of the 20,000 former players who were covered by the settlement, the league estimated that roughly 6,000 could develop Alzheimer’s disease or dementia, amongst the most serious symptoms of CTE. That’s almost one in three former players whose lives could be turned upside down.

Seeing those numbers really staggered me because for a long time the company line was that head trauma was not much of a problem at all. In 1994, Paul Tagliabue even suggested that concern about concussions was mostly a media invention. Interestingly, he walked those comments back recently, saying, “It sounded like I was shooting the messenger, which was the concussion issue. My intention at the time was to make a point which could have been made fairly simply: That there was a need for better data.”

I agree with the former commissioner that we need better data. I think it is the responsibility of every person who cares about the game of football to welcome as much research as possible to be done to ensure that future generations are fully aware of all the risks associated with this game.

It’s simply the right thing to do.

So with that in mind, I recently pledged to donate my brain to CTE research.

When I was a little kid, the first way I really bonded with my dad was through sports.

I still remember sitting in our living room together — him in his chair and me on the floor — and listening to all of the big prizefights on this big box radio.

My dad was a huge boxing fan, so we would listen to all of the prefight coverage as well as the main event. I’ll never forget when Karl Mildenberger, the German heavyweight, fought against Muhammad Ali for the world title in 1966. Sugar Ray Robinson was interviewed beforehand to give his breakdown of the fight, and there was something about his voice that stuck with me. It seemed like he was kind of dazed. He was slurring his words, struggling to put his thoughts together.

I turned to my dad and asked, “What wrong with him?”

My dad responded matter-of-factly, “Well, that’s from getting hit in the head too much.”

And that was that. Cut-and-dry.

That was kind of the extent of what I knew about head injuries for the majority of my life. Of course, I never related that to my experiences playing football. I mean, wasn’t that why we wore helmets to protect our heads?

It wasn’t until I was more than a decade into my retirement that I really started to pay attention to the debate surrounding head injuries. That was how I eventually came into contact with Chris Nowinski, a former professional wrestler who is a cofounder and the CEO of the Concussion Legacy Foundation. He is also a cofounder of the CTE Center at Boston University.

I found out about the Concussion Legacy Foundation while researching the issue of head injuries online, and eventually connected with Chris, who provided me with more insights on an issue that has only gained prominence in recent years. Chris has been a tireless advocate for this research, and has taken it upon himself to secure pledges for brain donations from former athletes who participated sports in which head injuries were a risk. For example, several high-profile athletes outside of football, including Dale Earnhardt Jr. and Brandi Chastain, have promised to donate their brains.

Many people assume that my decision to donate my brain was motivated by my own personal struggles.

When I announced my decision, the first questions I was asked were along the lines of, What signs are you noticing? Are you O.K.?

I can understand why people might get the impression that I must be struggling. The way CTE is generally presented in the media is less as a nuanced disease that affects different people in different ways, and more as a death sentence for anyone who suspects they have it.

But in my case, I’m doing just fine.

Of course “fine” is relative. I’ve had both my shoulders replaced. I’ve had doctors look aghast at X-rays of my neck. Just about anywhere there’s a joint on my body, I feel some form of soreness. And yeah, my memory isn’t always great.

But I’m also a 63-year-old man. As my doctor told me during my last physical, “You’ve just had too many birthdays.”

I still do regular media appearances and hammer out 45 minutes of cardio every single morning. By all accounts, I think I live a pretty active lifestyle. And that’s why I strongly believe it’s important for my brain to be studied alongside those of other players.

If we’re going to truly come to an understanding of what playing football does to a brain, we must study a full range of individuals. Of course, saying, “I’m donating my brain,” sounds dramatic, but I think this issue should be understood in more pragmatic terms. That means studying the brains of players like Junior Seau, who had very well-documented struggles, and myself, someone who has been fortunate to continue to function at a pretty high level nearly 30 years after retiring from the game.

Here’s the thing I love the most about my wife: Even though I’m not necessarily the most expressive person at times, usually I don’t need to be … because she just gets me.

That’s especially true when it comes to football.

I met Patrice in 1977, during my first off-season as a member of the 49ers. My career in professional football was a journey we shared together. Through the Super Bowl wins, the tough losses and the constant injuries, she was right next to me to cheer me on or cheer me up. Hell, on the day she married me, I had a cast on my right arm and another on my left leg. She basically married a mummy.

So when I was in the car with her running errands a few months ago and told her, “I think I’m going to donate my brain to concussion research,” it wasn’t this theatrical scene that you might envision. I didn’t have to go in detail explaining my logic or why I thought it was important. She had been around for all of the hits. She remembered all the times I had come home from practice with a concussion and needed to be in a dark room for a few days to recover.

She’s someone who has shared all of the joys and disappointments this game has given me. She understood why it was important for all the same reasons I did.

She said simply, “O.K.”

Everyone close to me had a pretty similar reaction to my announcement. The only blowback I experienced was from a few fans who thought I had no need to seek answers. Their general response was, “What’s your problem with football? You made millions of dollars playing … why are you complaining?”

That truly bothered me. I didn’t decide to donate my brain to CTE research out of some sort of resentment toward the game of football. I loved the opportunities the game provided me, but more than that, the reason I played was because I had an incredible passion for the sport. And it’s because I loved the game of football so much that to this day I still have not regrets about playing, regardless of the potential consequences for having done so. It’s one of the greatest things I’ve ever done.

But if you really love something, you need to be able to look at it critically. There will always be people interested in playing football at every level. I mean, hell, it’s the greatest game on earth. But it’s a disservice to the players and the game itself if every person who straps on a helmet doesn’t have a full understanding of the sport’s potential risks.

To any former players wondering why they should donate their brain to this cause, here’s my simple pitch.

Most football players understand what it means to contribute to something bigger than themselves — to work together to accomplish something great. That’s what our game is all about: shared sacrifice and devotion to each other in pursuit of a common goal. And that’s the opportunity we have here.

I don’t believe that the entities making billions of dollars off of our labor are going to fully commit to fixing this problem. As long as there are college and professional players willing to accept the currently known risks and strap on a helmet, there is not a whole lot of motivation for these large organizations to change things in a meaningful way.

So it’s incumbent upon us former players to lead the charge.

This is an area of research that is breaking new ground, but this isn’t a problem that is going to be solved soon. We are not on the verge of a cure. That’s pretty obvious.

We as former players own the ultimate study material for scientists. So it just doesn’t feel right to withhold it from people who actively are searching for a solution.

For a long time, cigarette companies denied that the smoking had any negative health effects. It wasn’t until there was accepted research to the contrary that cigarette companies were forced to indicate on their packaging that smoking might cause long-term damage. Those warnings became stronger over time, and it’s pretty clear now to anybody who lights up a cigarette that they are making a choice with consequences. It’s all explicitly listed on the packaging and widely accepted. There’s no room for doubt.

I want every person who plays football to have that level of understanding of the risks they’re taking on when they play the game.

There have been so many generations of players who never had that chance. It was not until fairly recently that football organizations began to recognize the potential dangers associated with head injuries. Now we have a lot of catching up to do.

For the last decade or so, CTE has been treated by players like the 800-pound gorilla in the room. To acknowledge it would mean owning up to the fact that they’re scared of it — or that they may already be suffering some of the side effects. That’s something that football players simply aren’t wired to do. It’s against our nature. But I’m hopeful that we’re reaching a point where we can move past that. A player’s first impulse will always be to try to shake it off and keep reaching for the helmet. But hopefully soon we’ll be able to accept that CTE is something we’re all scared of and we can try to fix this problem together.

We owe that to the next generation.

We owe that to each other.

To learn more about more about the Concussion Legacy Foundation, visit ConcussionFoundation.org