Pat Summitt, like all legendary athletic coaches, is a fierce competitor who has led her team to many victories. She is well-regarded in her field and in her community, and is by all accounts beloved by her colleagues and her current and former players.
So it’s no surprise that the Tennessee Lady Vols basketball coach is as determined and forthright off the court, announcing her diagnosis of early-onset Alzheimer’s disease at the start of the new school year — and only telling her players as soon as she knew the remaining two were off the court in China and back in Knoxville.
Summitt, 59, learned that she had Alzheimer’s disease after many tests at the Mayo Clinic in May. She said that troubling issues with her memory last season that caused her to lose her confidence and concerned her enough that she wouldn’t meet with players individually, motivated her to seek answers. The tests that can clinically diagnose Alzheimer’s disease and its related dementia indicated that Summitt had the “mild, early-onset” variety of the disease.
Denial ruled the summer, Summitt said, but as it wore on, she realized that she needed to talk to her players and her Tennessee administration. More importantly for her, she says that she came to a certain kind of terms with her condition that allowed her to move forward with her life.
The upshot out of Tennessee this week: Summitt will continue to work. She will remain at the helm of the Lady Vols, with the tactical and personal support of a team of assistants who have been at her side for decades. She will remain the coach of the University of Tennessee Lady Vols basketball team, and she will take care of herself as best as she can.
Summitt’s close friend Sally Jenkins wrote a lovely, understated, and quietly sad piece about her in the Washington Post, that left me thinking that as much as I don’t think I’d have the strength to write such a story about my best friend, at the same time I’d like to be the only one to do it, and I can only hope I’d find the strength and the grace at the appointed time. Jenkins said that talking about the situation had been a good, if painful thing, for everyone involved:
Over the last few days, with the clarity of her diagnosis and decision to go public, Summitt has recovered her confidence. More often than not, it is she who comforts others, as usual. Her staff have grief-stretched looks around their eyes, and seem quietly destroyed under their skins. Every so often you find one of them has ducked into her laundry room to weep. It’s Summitt who puts her arms around them and talks quietly into their ear. “I don’t want you worrying about me,” she says. Strong has always been her natural, preferred state.
Alzheimer’s disease is a demon. It’s a brain plaque from hell that erodes valleys in the cerebral cortex, kills neurons, disrupts synapses, and therefore robs individuals of their intellectual capacity. It steals likewise from families and friends, causing the person they love to change before their eyes (sometimes slowly, sometimes not.) I worked with people with dementia and their families for six years, when I was a very young, very green counselor, right out of graduate school. I went into their homes, heard their stories, absorbed their fears and profound need for answers, and in return I gave them the best advice I had about how to navigate this often-terrifying period in their lives. I immersed myself in Alzheimer’s, learned all that I could, knowing even then that I’d never have enough information, no matter how many research studies I memorized (and I memorized a lot.)
I also spent countless hours with people with Alzheimer’s, of all stages.They told me their fears, they told me I was full of shit and that it was really 1946, so shut the hell up. They revolted against the artificial schedule of long-term care, and wondered after their (sometimes dead) parents, siblings, and much-younger spouses. During this time I worked with a relative handful of early-onset patients, as obscure as Summitt as prominent, and their spouses, kids, and even sometimes parents. They were the roughest cases. These were people usually in the prime of their lives, ready to transition to golden years after decades of working and raising families, when their brains revolted and got them lost coming home from work or unable to complete a crossword puzzle. One of my clients was an elementary school teacher who, like Summitt, did brain puzzles and complicated step aerobic routines during the day while her husband was at work, to work her brain and try to stave off the deterioration the doctors said was imminent.
I told her she was working too hard. I told her that it wasn’t her fault, not any of this, and she did it anyway. She was a brilliant badass, and I always, inappropriately, unprofessionally, wanted to hold her in my arms. I can say the same about Pat Summitt.
What I’m taking away from this more than a decade after my own experience, and knowing what I know about the continuing stigma against Alzheimer’s, the fear and confusion that it causes, is Pat Summitt’s utter courage in speaking this aloud, not just with her loved ones or with her employers, but in the public sphere. She, quite frankly, could have worked a deal. Early stage Alzheimer’s (as best as it can be understood in terms of timeframe) can last for years — frequently not as long in early-onset, where it has seemed in my very limited experience to take hold and move more quicky, but still, years. She could have shown up courtside for at least another season and not disclosed this very personal information. She chose to be open, to approach this differently. And this sports writer thinks that’s pretty cool.
The Lady Vols don’t open until November 1. I’m marking it on my calendar now. Best of luck for a great year, Coach Summitt.