by Pat Summitt
I’d always had too many people in the house and fielded too many phone calls. For as long as I’d worked, I’d been prone to scatteredness. Somehow, I always got it all done and was still standing. “I’m too fast for germs,” I joked.
That winter, on the eve of a big game, I pulled up to Tennessee’s Thompson-Boling Arena on two wheels as I always did and jumped out to hurry inside to the locker room—leaving the car running, the door partly ajar, and my wallet on the floor. Before tip-off, a security guard had to come in to tell me that my beautiful S-Class Mercedes-Benz was idling like a getaway car, with exhaust pouring from the tailpipe.
I laughed it off. It was a case of having too much on my mind or being technologically challenged. The car had one of those fancy new keyless ignitions, and I had just been in too big of a rush, I thought.
But then I grew confused in the heat of a game. Suddenly, I could not recall a scheme. Normally I would reflexively hold up a hand signal and shout an offensive set to our team, “Horns!” Or a defensive shift, “Charlotte!” But now there were strange empty moments when I couldn’t call up the right term.
I would stare at the court unable to track all that I was watching. I’d spent four decades teaching myself to see ten players at once, the whole ninety-four feet of hardwood and all the movement on it, the multiple actions. I was accustomed to analyzing patterns and almost instantaneously ordering up attacks and counters; only now I saw an indistinguishable blur, flashes and bursts.
Friends started asking, “Are you having trouble with your memory?”
Finally I admitted, “Sometimes I draw blanks.”
I grew uncertain, and then a little frightened. I began staying in bed until late in the morning, which was unlike me. I’d always been a bolter, the first person up and the most energetic one, too, and I’d always gone to work earlier than anyone on my staff. But I began to dread going into the office.
In bed, there were no challenges. No worrisome situations that required a decision. No conversations in which I feared I might make a telltale slipup. I would lie under the covers, trying to figure out what was wrong in my head. Some mornings I would think to myself, I don’t even want to go in. I’ll just stay around here, in a safe place.
I was late to practice, slipping into the arena while it was already under way and then leaning quietly under one goal. I became increasingly hesitant and withdrawn, to the point that I even avoided meeting with our players one-on-one. I was afraid I might say something wrong.
Finally Mickie DeMoss confronted me. Mickie is a small, dark-eyed, and intense woman who has been a close friend to me for almost forty years. For twenty of those years we had worked together at Tennessee as trusted professional confidantes. Mickie was always truthful with me, even when it was hardest or led to an argument.
“Pat, what is going on with you?” she demanded.
“I don’t know,” I said. “I don’t know.”
“You need to be here,” she said. “You need to figure it out, so you can be here for this team.”
I thought it must be a reaction to medication. Each and every morning, I reluctantly swallowed a handful of prescriptions for various ailments. In 2004, I had developed an irregular heartbeat, and in 2006, I was all but immobilized with crippling pain that was diagnosed as an aggressive case of rheumatoid arthritis. The meds allowed me to get out of bed and keep working, but it wasn’t exactly a delightful cocktail.
I went to see my primary care physician, Dr. Amy Bentley, who suggested that I visit the famed Mayo Clinic in Minnesota for a thorough evaluation. But I decided to wait until after the season was over, because altering any of my medications might mean the excruciating pain of arthritis would return. So I went back to work and told myself I would deal with it in the spring.
Things grew worse. Two former Tennessee players happened to be living with me at the time. Shanna Zolman, a great sharp-shooting guard from the class of 2006, was staying in my pool house for a few months while she dealt with a difficult divorce and also rehabbed a knee injury. Another great, Kara Lawson (class of ’03), and her husband, Damien Barling, were staying downstairs while she did some training for the WNBA season. Both of them noticed the same nagging tendencies.
I remember saying to Damien, “Does Pat tell you the same story twice sometimes?” He said, “Yeah. But just let her tell it again because she’s having such a good time telling it.” We thought she was just so busy she couldn’t remember what she had told you. We talked about how she needed to slow down.
—KARA LAWSON
One afternoon I went with Shanna to downtown Knoxville to meet with a divorce lawyer I had helped her find. I don’t go downtown too often, and while we were there, I got turned around on a side street and got lost. “How can you get lost, when you’re practically the mayor of this city?” Shanna teased me.
Spring 2011 finally arrived—and with it a disheartening NCAA tournament loss. We were among the favorites to contend for a national championship with a 34-3 record, but by then I was having trouble concentrating and communicating what I wanted to our players in the huddles. I had lost my confidence.
A powerful Notre Dame team upset us in the Elite Eight in Dayton, Ohio, 73–59. Our sideline looked like a fire drill with all our assistants jumping in and out giving instructions, trying to stop the bleeding. When the final buzzer sounded, I stood on the sideline for a long moment, wondering if I had coached my last game. But to be honest, I was so sick with worry over myself that it was almost a relief to able to focus on my health.
That was a very scary time. Because the shoulder that we all leaned on now seemed to be unable to hold us all up like it normally could. And the worst part was not knowing what was wrong. It was like a shadow that nobody wanted to acknowledge.
—TYLER SUMMITT
As soon as we got back to Knoxville, my old friend Kim Mulkey, the Baylor coach, called Mickie. “What’s wrong with Pat?” she said. “She isn’t herself. I know it.” Calls came in from four or five other coaches all saying the same thing, asking concerned, probing questions.
I was about to find out. With the help of my son, Tyler; my longtime personal assistant, LaTina Haynes; my secretary, Katie Wynn; and my close friend Mary Margaret Carter, who is a top nurse anesthetist at the University of Tennessee Medical Center, I booked a series of appointments. I spent that spring occupied with a succession of tedious, alarming visits to doctors. I had heart tests, bone scans, and blood tests.
The doctors are lucky they are still standing. The first one I felt tempted to hit was a fine, much-decorated neurologist at the University of Tennessee Medical Center, Dr. John Dougherty. We went over my medication, and my memory difficulties, and he put me through a series of tests that included a magnetic resonance image of my brain.
After studying the MRI, Dougherty looked grave. He suspected my symptoms were not medication related, he said. In his opinion, I was suffering from a form of “dementia,” probably of the Alzheimer’s type, and I should prepare to retire.
The word confused me. Dementia? Only elderly people had that. Or battered football players.
I didn’t have dementia. How could someone like me have dementia? Hall of Fame coaches did not have dementia. In-demand corporate speakers, motivators, mothers of the year, and holders of all-time records for victories did not have dementia. And they did not retire.
“You don’t know me,” I said angrily. “You don’t know anything about me.”
I was certain that the Mayo Clinic would clear the whole thing up. Mayo was the world-renowned destination for anyone with a difficult or mysterious medical ailment, and surely they would tell me what was really wrong with me, and how to fix it. In late May, I flew out to Minnesota along with Tyler and Mary Margaret and checked into a small hotel next to the clinic.
For three days I underwent a battery of tests. I had another MRI. I had a PET (positron emission tomography) scan, which consists of having radioactive dye shot into your vein to highlight your or
gans and tissues. Next came a spinal tap—a needle was inserted into my back and fluid collected from my spinal column for analysis. I lay there, with a probe in my backbone. After the needle was removed, the nurse told me to remain lying down for twenty minutes. But sitting still is not something that comes naturally to me. After five minutes, I announced in no uncertain terms, “I feel fine.” I jumped off the table. The nurse looked at Tyler and lifted an eyebrow. “I’m not going to be the one to stop her,” she said. He just grinned and shook his head.
Then came a neuropsych exam, to evaluate my memory status and problem-solving abilities. In a way, it was the worst part. An attendant led me into a small white room, all alone. The examiner began firing math questions at me. Now, math has always been a sore subject. My college sorority sisters had to do a lot of my math homework for me. Suddenly I felt under pressure.
“Count backward from one hundred by sevens,” the examiner said.
Silence.
I was paralyzed.
“Do you know today’s date?”
I never know today’s date. I deal with dates strictly on a need-to-know basis.
The questions went on and on. Draw the face of a clock. Repeat number sequences. Spell words backward. I felt like I was in a final exam—and failing it. None of the questions seemed relevant; none seemed a test of my real capacities or the way my brain works on a regular basis. Why didn’t they test for any of the things I was good at?
At the end of the three days, Tyler and I met with Dr. Ronald C. Petersen, the Mayo Clinic’s leading neurologist and dementia expert, one of the best clinical researchers in the field. He rendered his opinion: I appeared to have “mild” signs of “early-onset dementia, Alzheimer’s type.”
Alzheimer’s type? What did that mean, type? My great-grandfather had Alzheimer’s. People with Alzheimer’s went wandering off into the woods in their pajamas. A bolt of fear shot through me. At the end, my great-grandfather didn’t even know his own name. Surely I didn’t have that.
There was no 100 percent sure test for Alzheimer’s, short of an autopsy, Dr. Petersen explained. But the images of my brain showed small pockmarks, signs of plaque that were hallmarks of the disease. He was still awaiting the result of my spinal tap, but he believed it would show the presence of something called the beta-amyloid protein, which was the closest thing to a clinically certain test for Alzheimer’s. If I had beta-amyloid in my cerebrospinal fluid, that meant the protein was building up in my brain, interfering with the nerve cells.
Tyler and I would need to make some decisions, he told us. He discussed the standard drugs for Alzheimer’s (more pills), which showed some effectiveness in slowing down the disease. He outlined nonpharmaceutical ways to combat it, such as diet, puzzles and brainteasers, and heavy exercise. He discussed clinical trials and where some of the research stood.
We would need a financial plan, and a long-term plan for my health, he said. Tyler should prepare himself to become “a caregiver.” I looked at Tyler—my son was only twenty, a junior at the University of Tennessee. He sat there with his open, flushed young face staring at the doctor, his eyes large and pooling blue, under a shelf of reddish-gold hair. He needs to be a college boy, I thought, not a caregiver.
The doctor murmured on. As the disease progressed, he said, I would be forced to quit working sooner rather than later. I should make plans to retire.
There was that suggestion again.
“I am not ready to retire,” I announced.
Dr. Petersen nodded his head. Although Alzheimer’s was a dire diagnosis, it didn’t mean I had to quit living a productive life. On the contrary, he said, I should work with it for as long as I felt able. But Alzheimer’s was hugely unpredictable, he warned. In some people it moved very quickly, while others were able to stay active and engaged for many years. There was no set pattern. I would simply have to wait and see.
I left Mayo in a state of profound denial. “Well, it isn’t cancer,” I kept saying to Tyler and Mary Margaret. “At least I don’t have cancer.”
I refused to accept the diagnosis, or any of the advice that went with it. Part of the problem was that I was so highly functional. All my life I’d found that the best way to deal with problems, especially physical ones, was to keep moving. Plunge ahead. “I’m fine,” I told Tyler. Once we got home to Knoxville, I would barely discuss it with him. I wouldn’t even say the word Alzheimer’s. I preferred dementia; somehow it sounded less severe. Anyway, I was too busy to talk much.
I decided to just go on about my normal business, and for the next several weeks that’s what I did. I rushed off to the annual Southeastern Conference meetings in Destin, Florida. Then back to Knoxville for two weeks of annual summer basketball camps. Then I hit the road again for a series of summer league tournaments to evaluate potential recruits. The denial lasted into the following month.
Tyler, meanwhile, was dealing with things in his own way. Which was a lot like mine. He went into action, preferring overdrive to conversation. He met with our accountant. He got himself up to speed on our finances and began to go about reorganizing them. He met with a lawyer. He read about the disease, sorting through the potential therapies and clinics where I might be treated. He downloaded puzzles and brainteasers onto my iPad and encouraged me to play them. He worked out relentlessly in the gym, preparing for his senior season as a walk-on on the Tennessee men’s basketball team. He pored over his textbooks; he was an honors student taking an accelerated class load and was on track to graduate in three years instead of four because it was his ambition to be a head coach. He wanted to apply for a job as a graduate assistant and get his master’s in education.
But underneath our skins, the diagnosis was wearing on us. Each morning atop Tyler’s stack of books was his Bible. Both of us were reading deeply in it. I tended to turn to the Psalms that asked for God’s help in staving off enemies. Tyler put a poster of the verse from Isaiah 40:31 over the door to his room in his rented off-campus apartment. “But those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.”
When the full blow finally fell, it was heavy. I had an appointment with a psychopharmacologist to check my reactions to the various medications and be sure they didn’t conflict. Most of my conversations with doctors by this point were disturbing. But this one was downright traumatic.
The doctor told me that given my diagnosis, frankly, he felt I could no longer work at all. I should step down immediately, because in his opinion the dementia would progress rapidly. I needed to quit, and get myself out of the public eye as quickly as possible, or I would “embarrass” myself and ruin my legacy.
As he spoke, I felt my fist clench. It was all I could do not to lunge across the desk and drop him with one punch. Who did he think he was? Even if I had an irreversible brain disease—even if I did—what right did he have to tell me how to cope with it?
Quit? Quit?
“Do you have any idea who you’re dealing with?” I said, my voice rising. “You don’t know me, and you don’t know what I’m capable of.”
I emerged from his office in tears. I cried all the way home in the car. In the passenger seat next to me, LaTina also wept. As soon as I walked in the door of my house, I went to my bedroom, climbed into the bed, and curled up in the dark. I didn’t get up for hours.
I had always been capable of dealing with any problem, and defeating any opponent, with sheer willpower. I was the resident superhero. Friends, family, and former players struggling physically or emotionally had always come to me for comfort and strong advice on how to push through problems.
“You can’t say ‘can’t’ to me,” I told our players. “Don’t ever say that word; I won’t accept it.”
I was more than the test numbers on four corners of a piece of paper, I told myself. The brain has an amazing ability to compensate—to transfer tasks. A spinal tap didn’t test for leadership, or relationships
, or the capacity of my heart.
Alzheimer’s might affect other people, but it had never met Pat Summitt, I declared inwardly. My “legacy” was not just an image—a posterized cardboard cutout. I was someone to reckon with. A person of uncompromising substance based on thirty-eight years of unbroken triumph and personified in 161 players who won whole fistfuls of banners and trophies. Mister Al Alzheimer was about to meet Miss Pat.
Quit? Quit? I was supposed to walk away from a Tennessee team that was everything I’d ever worked for, that was inseparable from … myself? I might as well try to walk out of my own body or peel off my own shadow. I’d been named head coach of women’s basketball at the University of Tennessee when I was just twenty-two years old. I’d hand-built every aspect of the program and handpicked every person associated with it. It wasn’t just a job; it was my life, my home, and my family, and the players were the second-deepest love of my life. It wasn’t for nothing that my nickname among them was “Mama Pat.” Or, when they were feeling especially flip, just “Your Mama.” As in, “How’d Your Mama know where we went last night?”
Quit? Quit? Coaching isn’t social work, but it’s more than just a game—it’s a heartfelt vocation, in which you are powerfully bonded to students who need you. Often, they need you more than they know they need you. It’s a job that engages all your mind and muscle and spirit, a job in which you grab kids by the arm and pull them out of their respective emotional fires, whatever that fire is, and show them what real self-worth looks like. Sometimes I almost wanted to say to a kid, “I’m going to save you from yourself, and you don’t even realize you need it. It’s going to be tough love and you’re going to get it in heavy doses, and you won’t like me at first, but at the end of the day you will love me. I’m going to show you how to live.”