NFL's Tim Shaw on Living with ALS
Updated: Jan 22, 2019
Dear 22-year-old Tim,
I want to tell you some things I think you, a senior linebacker at Penn State, should know — about your future, about life. But it’s going to be a little tricky. See, I’m only 34 years old, but it’s difficult for me to speak. It takes a lot of effort. It’s a struggle. But in its own little way, it’s also a blessing because it makes every word I say — not more important, just … more purposeful.
When you only have so many words, you tend to choose them wisely.
So I’ve decided to write you this letter because I have so much to tell you. I want to explain to you why it’s so difficult for me to speak — the diagnosis, all of it — and what my life is like now, because one day you’ll be in my shoes, living with the same struggles.
But I want to start with some good news.
You’re going to the NFL.
And … you’re gonna get a new guitar.
The Panthers are going to take you in the fifth round of the 2007 NFL draft. You’ll play a little bit on special teams as a rookie, and when you report for your second season, you’ll bring your crappy old beginner’s guitar — I think it’s called a Johnson or something? I can’t even remember — to training camp with you. There will be a kicker on the team named Rhys Lloyd, who also plays guitar. The two of you will kill time in the evenings during camp playing together in the dorms.
One night, Rhys will say, “Tim, you’re in the NFL now. You need a better guitar!”
But you won’t feel like you’re in the NFL. You’ll feel like you’re on the fringe — a special teamer who’s fighting every day for his roster spot. There’s no guarantee you’ll even survive training camp.
So you’ll make a deal with him: If you make the team, then you’ll buy a new guitar.
But don’t go looking for the nearest Guitar Center just yet, Tim, because you won’t make the team. You’re going to get cut.
That will be a big blow, but you’ll do what you’ve always done, and you’ll keep working. You’ll catch on with Jacksonville for a year. You’ll spend a year in Chicago. Then, in 2010, you’ll find yourself in Tennessee, trying to make your fourth different roster in your first four years in the league.
Not exactly how you envision your NFL career playing out, I know.
Along the way, even though you’ll make a couple of rosters, you still won’t buy yourself that guitar. Because there’s being on the team, and then there’s making the team. And you’re not looking to just be in the NFL.
You’re looking to make it.
So you’ll wait.
Well, you’re gonna make it with the Titans. Like, really make it. You’ll be a captain on special teams and even see some time at linebacker. You won’t just earn a roster spot, you’ll solidify it. You’ll finally find a home in Tennessee.
That’s when you’ll call up your friend Michael in Chicago — a guy who gave you guitar lessons when you were with the Bears — and tell him you’re ready. Ready for a real guitar. And you know just the one you want.
A Martin HD-28.
Michael will call up a buddy of his and get you a good deal, and it’ll be the best $1,700 you’ll ever spend.
That guitar will become one of your prized possessions.
Your three seasons in Tennessee will be incredible. It won’t be the career you always hoped for, but you’ll be living your own little piece of the NFL dream. Life will be pretty good.
Then, in 2013, at 29 years old and during the off-season after your third season in Tennessee, you’ll start noticing something happening to your body.
It’ll start with weird muscle twitches. Your right hand will flinch, or you’ll get what feels like a spasm in your right bicep. You won’t think much of it, but within a few weeks, your muscles will be bouncing all over the place.
Then, while you’re visiting Mom and Dad up in Michigan, you’ll be helping unload groceries from the car when you’ll pick up a gallon of milk, and it’ll slip out of your right hand and spill all over the garage floor.
No big deal, right? Butterfingers. It happens.
But it won’t feel like a normal mistake. Deep inside, something will be telling you it’s much more.
Time will tell you that you’re right.
When you get back to Nashville for training camp, you’ll be in the weight room on the pull-up bar and your right hand will start slipping off. On the bench press, your right arm won’t go up nearly as fast as your left.
In a preseason game against the Falcons, there will be a run play where you’ll slide over and meet the ball-carrier in the hole. You’ll be in perfect position. You’ll lay a big hit on him, too. But your right arm won’t hang on, and the guy will slide right past you and keep on running.
During the last round of roster cuts in training camp, you’ll be called into your head coach’s office.
Your performance on the field will have slipped so much that the Titans will cut you.
You’ll try to catch on with another team, but whatever is happening to your body will make it so that you won’t be the same player you once were. So no team will pick you up.
In March, 2014, you’ll file your retirement papers, and the dream will be over. You’ll accept it, too. You’ll be ready to move on. Ready to live the rest of your life.
But life will have other ideas.
It’s April, 2014, less than a month after you officially retired and just a couple of weeks after your 30th birthday. You’re headed to the doctor. You’ve been working with him for a couple of months, and he’s been trying to figure out what’s going on with your body — something the Titans doctors and others you’ve seen since haven’t been able to do.
Now, he thinks he knows.
You’re sitting in a chair in the exam room when the doctor comes in. He lowers himself onto his little stool and wheels over to you. You notice he has a piece of paper in his hand with four or five things scribbled on it. He looks down at the paper, then up at you.
And I’m telling you … it’s been almost five years since that day, and to this moment, I can still hear the doctor’s words echoing in my head. I can hear his voice, calm and deliberate, as he says it.
“Tim, I believe you have ALS.”
I wish I could tell you how to take this news, Tim. But honestly, I’m not even sure what the right advice would be. There’s no playbook. No manual. No code of conduct.
What I can do is tell you how I remember it.
Basically … you’ll be in a daze. You’ll just sit there, staring at the doctor, shaking your head, utterly speechless. The doctor will walk you out of his office and to the exit, and on the way, he’ll explain what the next steps are and what drugs you need to start taking.
But you won’t really hear him.
You’ll still be in shock.
Once you get outside, you’ll fumble around in your pocket for your valet ticket. Finally, you’ll find it. And as you wait for the valet to bring your car around, you’ll think about your sister-in-law’s mother who passed away from ALS a few months earlier. In a span of six weeks, she went from working full time to being bedridden. In less than five years, from healthy and active, to unable to do anything physically but blink.
All she could do was blink.
You’ll imagine yourself in that same position, laying in bed, unable to move, your family standing around you. You’ll wonder if it’s a daydream, or an actual window into your future.
Then, the valet will pull up in your car.
You’ll climb into the driver’s seat and close the door.
And you’ll finally let it all out.
You won’t even put the car in drive. You’ll just sit there and start sobbing like a baby — pounding the steering wheel and crying out, “Why, God? Why! Why me?”
You’ll go on like that for a couple of minutes. Then you’ll wipe the tears from your eyes, take a deep breath, drive away, and go on with the rest of your day, still not sure how to wrap your head around those three letters.
Telling Mom and Dad will be one of the most difficult things you’ll ever have to do. They’ll be home in Michigan, so you’ll have to tell them over the phone. Your brother Steve and his wife will be with them. Dad will put you on speaker so everybody can hear, but when it comes time for you to say the words, you won’t even be able to. You won’t be able to say the letters. They’ll just kind of hang on your lips, almost like releasing them might somehow make the whole thing more real. More scary.
When you finally get the words out, you won’t hear anything on the other end of the phone. Just silence. Shock.
Next, you’ll call your other brothers — Pete in Wisconsin and Drew in California — and you’ll get the same reaction.
There’s nothing I can tell you that will prepare you for those conversations, Tim.
You’ll just have to suck it up and do what you have to do.
Over the next few months, you’ll have a lot of phone calls like the ones to your family — you breaking the news of your diagnosis to the people closest to you, one by one. But the weird thing is, other than the addition of those uncomfortable conversations, nothing else in your life will really change. At least not right away. For those first few months, you’ll live the life most retired athletes live. You’ll travel. You’ll play a lot of golf.
You’ll just kind of carry on. You’ll let the thought creep into your mind that maybe the doctor was wrong. That’s happened before, right? Maybe you’re not sick at all. Maybe it was all just a dream….
But then your body will remind you that your disease is very real.
Your body will begin to fight you. You’ll start dropping things more frequently. You’ll stumble more. You’ll start falling, a lot. On the golf course. At home. One night, when you’re out at a bar in downtown Nashville with your friends, you’ll fall and split your chin open.
I wish I could tell that last one will be alcohol-induced, but that’s just not the truth.
Lucky for you, you’ll have a friend who is a surgeon — you’ll make some great friends … remember, life is about people — and she’ll come to your house at one in the morning and stitch you up, right there in your kitchen.
Your body will start changing, too. You’ll start losing the muscle you’ve built up through years of lifting and training. You’ll joke that when you take your shirt off, you look more like a DB than a linebacker.
Keep that sense of humor, Tim. I can’t even begin to tell you how important that’s going to be. Because no matter how much you hope, wish and pray, you won’t be able to control what’s happening to your body.
But you can always control your attitude.
There’s a lot I could tell you about this disease and about how to handle it, Tim. But the most important thing I can tell you is that even though this is a disease that will affect you physically — it will slowly rob you of your voluntary muscle functions — that doesn’t mean it will be a solely physical battle.
It will also be a psychological battle.
So as physically tough as you are, you’d better get mentally tough, too.
You’ll go through every stage of grief. But the one I want to really focus on is acceptance.
When you’re sitting down playing your Martin and you start dropping the pick because your right hand isn’t strong enough to hold onto it anymore, you’ll throw the pick away and begin using your fingers. Then, as your left hand gets weaker and you have more trouble forming the chords, you’ll pick your guitar up less and less. It will get to the point where you’ll look over at your guitar sitting in the corner, and you won’t even be able to remember the last time you played it. You’ll want to pick it up and play James Morrison’s “Right By Your Side.” But you won’t be able to.
You’ll have to let it go, Tim.
Do not waste too much time grieving.
This disease … it’s a process. You can drown yourself in grief, mourning the loss of your ability to play guitar, or to play golf, or to even lift your fork to your mouth. But every second spent grieving those losses will be time stolen from what you still do have.
Time you will never get back.
You have to learn to move on, Tim.
Otherwise, you’ll grieve yourself to death.
This is a lot to take in.
But don’t be scared. You’re going to have incredible people surrounding you every step of the way.
Now, I’ve told you about what your journey is going to be like — how you’re going to get from where you are, basically still a kid living the college dream, to where I am today.
But now I want to tell you a little bit about what’s happening with me right now.
It’s been a tough few months, Tim. I recently gave up my golf club membership. I can’t swing a club anymore, so I have no use for it.
Also … I sold the Martin.
It was just sitting there in the corner, taunting me. I looked at it one day and decided that it was time to let it go. So I called up Michael in Chicago and sold it to him. I know he’ll take good care of it.
That was a tough decision.
But it was also a big step — just a part of the process of learning to let go and focus on the present.
It’s something I’m still learning.
Today, I’m 34 years old, and I live in Nashville with Mom and Dad. I have to rely on them for just about everything.
I can barely move my arms. I can’t walk on my own, so I recently started using a wheelchair. I have trouble chewing and swallowing. I can still eat a little bit — I’d kill for a good pork chop, but I have to settle for foods more like spaghetti and grilled cheese, which are easier for me to chew. Eating just really tires me out. Sometimes it takes me 20 minutes to eat half a sandwich. If I had to chew and swallow all my own food, I’d spend all day eating. So I have a port surgically inserted into my belly so Dad can feed liquid nutritional supplements directly into my stomach. It’s much easier.
Every single day is a struggle for me, Tim.
And you know what?
I’m so thankful.
A lot of people, when they are diagnosed with ALS … they go fast. Many within three or four years, some in less than one. I’m coming up on five years since the diagnosis, and all things considered, I’m doing great.
Yes, my body is failing. But my mind is not giving up. The way I look at it is, as I lose physical abilities, that strength doesn’t leave me. It just gets transferred — to my mind, my spirit and my faith in God.
I do pray for healing. I ask God to take this disease away from me because it’s so hard.
But what I pray about most is for God to show me how He wants me to spend my time and share what He’s given me.
If I live to be 100 years old, I don’t want to look back at my life and say, “Yep! Back when I was 25, playing in the NFL … man, those were the days!”
I know you’re not thinking that far ahead, Tim. But it’s important that you start looking at the bigger picture sooner rather than later. You’re going to have a nice little NFL career. You’ll make a lot of money and have some cool experiences. But when you get to where I am now, you’ll be helping people. You’ll be making a positive impact on the world, inspiring people to look at their lives differently and appreciate the little things in life. At least that will be your goal.
And it will be the absolute best time of your life.
I want to leave you with the same message I try to share with everybody I meet today.
Take a look at your life, Tim. Really step back and ask yourself what’s important. Is it football, or is it the relationships and the people you have in your life who love you and care about you?
I think you already know the answer.
Find what’s most important in your life, and live for that. Don’t let three letters — NFL — define you.
The same way I refuse to let three letters define me.
Wake up every day and choose to make a positive impact on other people. Don’t wait for a disease or a diagnosis or a disaster to start living your life the way God intended. Read this letter often and let it serve as a reminder to live your best life today and enjoy every little blessing.
Then pull out your guitar and play a song.
For old times’ sake.
Story Originally Published in The Players' Tribune