"Diabetes? I've heard of it. It's one of those charity diseases, the kind they raise money for... There's no way I can have diabetes. I'm a twenty-one year-old dancer with the New York City Ballet. Things like that don't happen to people like me!"
— Zippora Karz, from the first chapter of her new memoir, "The Sugarless Plum: A Ballerina's Triumph Over Diabetes."
Zippora's new book will be in stores beginning this Sunday, Nov. 1, and is available now on Amazon. I was delighted to receive an advance copy recently, as a follow-on to the moving guest post that Zippora published here at DiabetesMine this summer: "When Diabetes Happens... to a Prima Ballerina!"
As Zippora notes in that post, "We all have a story. We all experience obstacles that affect our motivation and ability to take the best care possible." But if anyone's inauspicious beginnings with diabetes could be likened to a roller-coaster ride, it would be Zippora's.
Imagine keeping a schedule that had you rehearsing rigorous dance for six hours straight each day, followed by another 3 hours of dance performance most nights — before an audience that included the likes of the queen of Denmark! Up on your toes in excruciating pain, striving to look "fluid and pure" while silently panicking that your blood sugar may be plummeting. Zippora did this for a dozen years running, from 1987 (when she was diagnosed) to 1999, dancing world-renowned roles including The Sugar Plum Fairy in The Nutcracker, Swan Lake, Serenade, Apollo, Agon, and A Midsummer Night's Dream.
The "Sugarless Plum" is a surprisingly intricate exposÃ© of the struggle to control type 1 diabetes in the ruthlessly demanding world of professional ballet. "Not many people realize that being a ballerina is one of the most athletic careers you can have," Zippora writes.
I say "intricate" because she shares the details of her experiments with diet, adjusting insulin dosing, and use of herbal supplements — along with difficulties ranging from skin sores that wouldn't heal to snarky comments by competing dancers, who thought she was starving herself on purpose. The worst of it, she describes, was the pressure she put on herself to be perfect and the many mistakes she made in denying that her own health was even at risk.
In essence, this is a story of denial, and how dysfunctional that reaction is. Ignoring your diabetes will neither make it go away in the long-term, nor make you feel any more "normal" in the short-term, Zippora learns. Some anecdotes that stuck out in my mind:
* Zippora experiences two misdiagnoses (two times she was told she had type 2 diabetes) and then a major setback when she left her aggressive type 1 doctor to return to a physician who took her off insulin and told her that even glucose testing was unnecessary (!) At the time, she actually embraced the idea that her diabetes might be "less severe," although her instincts told her otherwise.
* Glucose control is all about a tight regime, and yet "I had no routine," Zippora writes. Every ballet was different, some with more jumps and running, others slow and controlled. Some nights she danced only the first performance, other nights all three. During rehearsals, lunch came at different times and sometimes not at all. I was awed to read how she survived this chaos without the help of even an insulin pump.
* Living alone, Zippora found her pet cats invaluable. One even learned to detect blood sugar lows, and would paw at her as her levels dropped.
* She went through a long period of hiding her meter and syringes. In the beginning, in fact, she even left the country on tour without bringing a backup meter — and later panicked when she dropped and broke the little machine that she suddenly realized her life depended on.
* For many years, "I hated my body for ruining my life," she writes. Quite surprising from someone who's accomplished so much.
Only after retiring from The New York City Ballet in 1999 did Zippora finally come to accept her diabetes. She began to speak about her life, to groups from the JDRF, ChildrenWithDiabetes, TCOYD, and other advocacy organizations.
"I didn't want my story to just be 'girl overcomes obstacles to live her dream.' It was important to me to discuss and share my diagnosis, my denial, my fears and all the hurdles I encountered," she writes. "And I've been amazed to see how many people are affected and motivated by my story."
Zippora now lives in Los Angeles, where she coaches professional dancers, and is a very vocal diabetes advocate.
I think her book is a powerful testament to the reality of coping with type 1 diabetes, although I do wonder if there's much appeal for anyone who has not walked in our shoes. On the other hand, there's increasing recognition these days of the power of patient stories across the board.
What I like best is Zippora's attitude of grounded optimism:
"Each time I give a talk, I appreciate anew that my illness took me on a path I can now value and cherish, even though I hated being on it at the time. I recognize that in the midst of struggle we all feel alone. Yet, in talking to others, I see how universal our feelings really are. It's the sharing of those feelings that provides the strength to move forward. Diabetes is a day-to-day, hour-to-hour disease, and that means that it can be exhausting...
"I'm not saying it's easy and I'm not saying I wouldn't jump for joy if there were a cure found tomorrow. But I can honestly say I feel blessed to live in a time when there are so many resources that allow me and so many others to live full, healthy, and passion-filled lives."
Worth a read, and would make a great present in particular for any young girl/woman dealing with type 1 diabetes. [Harlequin press, $15.61 for hardcover]
Learn more about Zippora at her website: www.zipporakarz.com.