BU grad's inspiring address

Jan. 2, 2008

On Dec. 21, the Butler basketball team, preparing for its game at Florida Gulf Coast, attended a typical night-before-the game dinner at the Islamorada Fish Company in Fort Myers, Fla. The evening turned out to be anything but typical.

Joining the Bulldogs that night was former Butler track and cross country athlete Matt White, a 1989 graduate. White was diagnosed with amyotrophic lateral sclerosis (ALS), better known as Lou Gehrig's disease, in 2000, and he retired to Cape Haze, Fla., in 2003. He spoke to the team, through his wife, Shartrina, after the dinner. Following is the text of his message:

The 1967 NFL championship game is considered the greatest football game ever played. The Ice Bowl, as it is known, has nothing to do with why I am here or what I have to say. It is just that I hate the Cowboys, and they lost the game, so I love to tell this story. The game was played at Lambeau Field in Green Bay on New Year's Eve. The official game-time temperature was 13 degrees below zero with a wind-chill around 48 below. The playing surface was frozen solid mud, hard as a rock, and as smooth and slippery as ice.

A marching band was scheduled to perform but had some problems. During the pregame show their instruments froze and would not play, and the metal mouthpieces got stuck to the players' lips. Seven members of the band were taken to the hospital and the halftime show was canceled. It was so cold that the officials were unable to use their whistles. On the opening kickoff the referee blew his whistle to signal the start of play and it froze to his lips. For the rest of the game, the officials had to yell to end plays. Despite the conditions, both teams played great football.

The Packers took an early 14-0 lead, but the Cowboys battled back and led 17-14 late in the game. With less than five minutes left in regulation, Green Bay took over deep in their own territory. Hall of Fame quarterback Bart Starr led his team down the field with several key third-down completions, the last of which gave the Packers a first down at the Dallas 3-yard line with under a minute to play. Two failed running plays followed by their final timeout left Green Bay with third-and-goal at the 1 with 16 seconds left.

The Packers had three choices -- a pass to the end zone that would give them either a touchdown or one more play, a short field goal to force overtime, or they could put the championship on the line by trying to run it in. A run would give the Packers only one shot. They had to score or time would run out. When Starr got to legendary coach Vince Lombardi on the sideline, their conversation was brief. The quarterback wanted to run it in. The coach wanted to get in out of the cold. Starr asked for a sneak, and Lombardi's response was, what the hell, run it in and let's get out of here. Everyone expected a pass. Starr took the snap, ran up the middle and scored, giving the Packers a 21-17 win over the Cowboys and their third consecutive NFL championship. Imagine the focus, determination and courage it took to compete successfully in that game under those conditions. Maybe this story does have some relevance to what I have to say this evening.

I should tell you who I am and what I have been through to get here. Also, some of the things I have learned along the way. I was a pretty good middle-distance runner in high school. Good enough to be recruited to run track at Butler. My decision to attend Butler was easy. They had an excellent radio/television department, and a track team that I could help. It did not hurt that Butler's basketball team beat Notre Dame a few days before my visit, which I thought was pretty cool. I ran well enough to letter three times in track and all four years in cross country. I was never one of our best cross country runners, but I was our best half-miler and won a number of key races, including three indoor state championships. I learned early on that winning races was not only about talent and training. The good runners were all talented and worked hard, but the best runners were able to use their talent fearlessly in competition. It is scary to run faster than you ever have before or to face and beat someone you've never beaten before. It's probably a lot like playing Maryland with a chance to go to the Sweet 16, or to line up against the defending national champions. Scary, but being fearless helps.

When I graduated in 1989, I was fortunate to use my Butler connections to get a job in the radio division at Emmis Communications as a salesperson. The job was extremely difficult for a 22-year-old kid. Nine out of 10 business owners I called did not want to talk to another salesperson, and the 10th only talked to me because they had something bad to say about radio advertising, my radio station, the music we played, or the last salesperson they had met. My income was entirely based on what I sold, and the first few years I did not sell much, but I drew on my experience as a courageous runner and fearlessly forged ahead. I found success at something I ultimately turned out to be pretty good at. As Emmis Communications grew and bought more radio stations, I was promoted several times and put in charge of the sales department of the station we had in Chicago. At 32, I was responsible for the revenue of one the largest and most profitable radio stations in the country. When I interviewed and hired people, I, of course, looked for talented, successful individuals, but I really wanted fearless people to work for me. I found them and we all did very well.

I had a blessed life. I had the physical and mental gifts of a strong body and mind. I had a stable and supportive family. I used my athletic ability to get a good education. I had many friends, a nice house, a nice car, and success in a great career. I constantly competed, worked and lived fearlessly to maximize my talents.

My life change entirely in January 2000 when I was diagnosed with ALS, amyotrophic lateral sclerosis, commonly known as Lou Gehrig's disease.

ALS is a fatal degenerative neuromuscular disease that affects the synapse between the voluntary muscles and the nerves that control them. Eventually, all of the body's voluntary muscles atrophy and fail. Ultimately, each person with ALS dies when their diaphragm stops working and they stop breathing. When diagnosed, ALS patients are told the same thing Lou Gehrig was told more than 60 years ago -- ALS has no known cause, no treatment and no cure. Over the next four years you will lose the ability to use your arms and hands, you will not be able to walk, you will not be able to speak or swallow, and finally you will not be able to breathe. ALS is 100 percent fatal, and you will most likely be dead within four years.

Almost eight years ago I was told these thing, and the only way I have gotten through those years is by living with courage every single day. I first had weakness in my left hand and gradually lost the use of both hands, then my arms, then my legs lost all their strength. I also began to have difficulty breathing, speaking and swallowing. Within four years of my diagnosis, I got food through a stomach tube, air from a ventilator and was entirely dependent on the people around me for my comfort and safety. Now my speech is nearly unintelligible and I am able to move my head a little from side to side. I am kept alive now because of the ventilator and tracheotomy that will accompany me for the rest of my life.

Knowing what I faced after my diagnosis, I had to decide what to do with the time I had left. Living fearlessly, I decided to control as much of my future as I could and to make the most of this negative. The first four years I did what most would call "lived with ALS." I worked as long as I could at a job that I loved, trying to make a valuable contribution. I traveled and spent time with family and friends, doing my favorite things; including playing golf at each of the top 10 golf courses in the United States I created a charitable foundation, and with the generous support of so many colleagues and friends, helped raise more than $300,000 for ALS research. I spent time reading and praying, seeking greater faith, peace of mind, and courage to face the day when I would stop breathing and die. I lived life like the end was nearing. Ultimately, I gave up driving, golfing, walking, eating and the independence of bathing and dressing myself. I left Chicago and moved to Florida to be near my parents in my final months. I felt good about my life and what I had done in the recent years. After my life was extended with the ventilator, I have continued to live a life without fear. A life on life support that most would think impossible.

As my muscles continue to weaken, we make adaptive changes to help improve my quality of life. The ventilator that does my breathing is about the size of a toaster, and is just about as easy to operate. It runs on an eight-hour battery and straps to the back of my wheelchair. A wireless laptop attached to my wheelchair accompanies me nearly everywhere. With a slight movement of my head the computer talks for me, reads to me, turns on and adjusts household appliances, TVs and stereos, does my typing and keeps me totally connected with the world. If I want to hop in the pool, I get into a floating chair we made, and if I want to go boating, I strap my wheelchair to a lift and drop right in for a ride. I have invented three different fishing reels that I can operate almost entirely by myself using only the blink of one eye. Much of my time is spent fishing, a passion that even I would have never thought I could do -- until I did it.

Living life like this is not easy, not for me, not for my wife, my family or my friends. We all have to be fearless just to get through every day, and even more so to get out and do things like boating, fishing and even being here to meet with you and attend tomorrow's game. It is hard now to do so many things I used to take for granted. It is worth it, though. I find joy in every day. One of several things I haven't had to give up is my love for Butler basketball.

I have been an avid fan of Butler basketball for more than 20 years. I have attended, watched or listened to nearly every game in that time. I was there before coach Collier arrived and brought back a tradition of championship excellence to the program. My first clear memory of Butler basketball is of watching Darrin Fitzgerald score 54 against Detroit. He kept moving farther and farther out to shoot, and he just kept making them. I swear he made a couple from just a few steps inside half-court. I was there when we beat Damon Bailey, Alan Henderson and Bob Knight at Hinkle. I hope someday they will have the [courage] to come back.

I was in Cincinnati when we beat Xavier in the semifinal and the next day when we lost to Evansville in our first-ever MCC Tournament final. I was there when a really good Butler team beat Purdue at Purdue, beat IU at Conseco but lost to Green Bay and missed the tournament. Through those years I have cheered for Barry and Karaffa. Fitzgerald, Tucker, Beauford and Reliford. Archibald, Guice, Bowen, Marshall and Jackson. Archey, Graves, Graves and Graves, Miller, Cornette, Hainje and dozens more, including all of you. I have heard coach Collier stomp his foot in anger and frustration more times than anyone in this room. The last time I saw Butler play live, we lost to Milwaukee in the tournament final, then you thrilled us with a Sweet 16 run. I cannot wait to see you play live and in person tomorrow night.

I read and hear about the Butler Way. I cannot define what it means, but I know for sure that it includes playing fearlessly. The way this team and this program has developed into one of the best in the nation is a testament to the power of courage. To approach new and scary opportunities fearlessly is an absolute requirement if you want to achieve greatness. Many times I have seen people fail to maximize their athletic or professional ability because of fear. Even if they knew how to do what needed done, had the talent to do it, and worked hard, they let fear hold them back. They could find their own little weakness and let it stop them. People will tell you that you can accomplish anything if you put your mind to it. Well, that is just not true.

What is true is that you can try anything, and your chances improve dramatically if you try it fearlessly. I think that is one of the reasons that those I am closest to and people I barely know tell me I am an inspiration, and hopefully, that is why I am here tonight. To show you how a life lived without fear can be a very successful life and can overcome almost anything. I find inspiration in this program, in this team, and in the way each of you plays. Keep playing fearlessly, keep winning fearlessly, and when you are done, live fearlessly.

Good luck tomorrow and with the rest of the season.

Thank you for inviting me to address you tonight. I count this opportunity as one of my greatest honors and I hope you got even a fraction of the benefit that I got out of this meeting. Thank you.