- Written by Diana L. Chapman
02 Sep 2011
MY TURN - The day I heard the announcement about widely-respected basketball coach Pat Summitt’s battle with early-onset dementia, a rush of emotions from --crushing heartbreak, painful memories, refreshing respect --swept over me.
Although I never heard of Pat Summitt (which in the world of sports is like not knowing Elvis Presley or Princess Di) her statement and obvious determination to remain as the women's basketball coach “as long as the good lord is willing” for the University of Tennessee reminded me of one of my saddest moments.
The minute the news broke … Summitt, 59, has coached for 37 years and has won more games than any other basketball coach … I was riveted.
She might not realize it, I thought, but she had just placed a kind hand on the shoulders of hundreds, perhaps thousands, of people coping with the disease and provided them guidance in ways she'll never know.
“Throughout my career, I have always made it a point that my life and basketball team are an open book,” Summitt said during a video posted on the university’s website.
That’s why she decided to share her story. She opened this chapter when she revealed her visit to the Mayo Clinic after forgetting scheduled appointments, specific basketball plays and grew more confused. Things she should know like the back of her hand were slipping away.
The bold honesty and genuine emotions she shared thrilled and saddened me because of a similar announcement that came nearly 20 years ago from another national icon: Annette Funicello, a Disney Mousketeer at age of 12 who became a singer and actress and starred in a slew of famous beach movies with her side-kick Frankie Avalon.
For years, however, she kept a terrible secret: She was experiencing repeated spells of physical collapse, dealt with the depths of exhaustion, coped with dizzy spills and myriad of other debilitating symptoms.
When she reunited with Avalon in later years to do more beach movies, she fell frequently on the set. Avalon always helped her up, but entertainment reporters caught the action and told her if she didn’t reveal what was going on, they would do it for her. Funicello would have to come out with her story or they would publish what they believed – that she was a drunk.
In 1992, she admitted publicly that she had been diagnosed with multiple sclerosis. This revelation came just two months after I learned that mysterious and sneaky-disease was attacking me. Every day, I felt more and more like I was walking through a wall of water while trying to keep pace with my friends and colleagues.
I was exhausted down to my core; for years I blamed myself for being lazy – until I learned that fatigue was one of the most debilitating symptoms of MS.
At the time, I was a reporter at the Daily Breeze, a local newspaper in Torrance, when many nebulous symptoms’ began showing up. Some I had had since I was child. But never had so many swooped in at once. It was scary.
My hands and legs began to tingle for weeks at a time. I became confused, tripped and fell, drove my editors crazy when I put in wrong dates and times on photo assignments and in stories. By 2 p.m. every working day, I became so exhausted I wanted to collapse into bed.
I was only 32 years old, but like Summit, I couldn’t remember simple things and lost my train of thought consistently. Once a friend told me that she and her boyfriend of eight years had broken up. The next day she called and I couldn’t remember it.
Another morning, I came out of my house and saw spatters of brilliant red blood everywhere, up and down my driveway. It took me more than an hour to decipher what I was really seeing – brown drops of car oil.
Before I was diagnosed, my doctor told me I needed a psychiatrist.
No one took my condition seriously until one 90 degree day. I was at a local City Hall talking to the city manager’s secretary when my eye begin twitching and fluttering repeatedly. All of a sudden I felt a piercing snap. It was painful, but quickly went away. By 6 p.m. when I was driving home I couldn’t see out of my right eye. Instead, there was a white, blurry fog.
Multiple sclerosis wreaks havoc with the central nervous system. It messes up emotions and can serve up anything from paralysis in the limbs, total blindness, slurred speech, loss of balance, dizzy spells, memory loss or all the above.
My parents, from the old school, begged me to hide it. They were worried how others would react, how my employers would behave, whether I would lose friends. But from a young age, I had always been an open book and hiding this made me feel like I had to hide from myself.
Now I was in two battles: How to cope with such an illness I couldn’t begin to fathom and whether I should hide it
My answer came when Funicello made her announcement. It was as though a door flew open.
The actress unknowingly guided me to how I was going to handle a sad and tragic illness that robs people of normal life often starting in their 30s. It robs them of time with the family, a social life, of living life to the fullest. And all that is tough to do when you have to go to be in the middle of the afternoon. Working first on my repeated forgetfulness, I consulted with an occupational therapist.
“Write everything in a date book,” she told me. But then I would forget to look at the date book.
Living like I was attached to an erratic pendulum, I finally understood from Funicello that it was better to share my story than hide it, because people would see what was happening and make all sorts of things up. An animal trainer I met once had multiple sclerosis. He didn’t tell anyone. His frequent falls and his paralyzed face caused others to draw their own conclusions.
His co-workers decided he was a cocaine addict.
Another time I was talking to a couple who had a close relative working on the docks who was diagnosed with M.S. He should quit, they said, because he was so lazy. I screeched my chair back and made this proclamation: “He is not lazy. He has MS!”
After Annette, the door opened and I stepped out slowly. I found good friends tried to understand the best they could. The friends I did lose weren’t true friends anyway. The hardest thing for anyone to understand is that I became exhausted even making calls and I forgot to return many of them. In the meantime, my immune system fired into "failure mode."
I had repeated bouts of sinus infections, bronchitis and pneumonia. A sample of severe memory loss and connection was when I parked at the beach and failed to put money in the meter. That was the first day. The next day I went to the same parking lot and forgot again. The third time in a row that I did it I knew the city was racking up some great fees from my inability to remind myself to put, for god sakes, money in the meter!
Watching Annette made it much easier for me to understand hiding the illness was not the answer – at least for me. It guided me through a desperate and treacherous time in my life. I was afraid, because no one can tell you what will happen next and it’s hard to train yourself at age 32 that perhaps you can no longer run around at night, have such a big social life and need to go to bed at 9, or sooner, just to make it through the next day.
Since those early days, I’ve thanked Funicello frequently for saving me. She made me understand many others were going through the same ordeals, including movie stars, and showed me that hiding it is not the answer for everyone.
Annette gave me a path; Summitt is likely to do so too among the folks who fight early onset dementia.
As I sit hear writing this, I can’t help but admire Summitt’s personal courage to face this head on. Perhaps she understands that she’s unlocking many doors to help others with her frankness. I salute her and Annette, and of course Actor Michael J. Fox, who has Parkinson’s disease, for coming out publicly and bringing brilliant lights on their diseases.
For all of them, I pray they can continue in this work “as long as the good lord is willing.”
Tags: Pat Summitt, basketball coach, Tennessee, Tennessee basketball, early onset dementia, dementia, Annette Funicello, Disney, Disney Mousketeer, multiple sclerosis, MS, Michael J. Fox, Parkinsons
Vol 9 Issue 70
Pub: Sept 2, 2011