New York Times  Bestselling Author

The Hero Behind Pretending to Dance

unnamedWhen I was growing up, my sister Joann was my hero. Never mind the fact that she couldn’t stand me. I was seven years younger and when I came along, I took over her position as Princess of the Family. She didn’t bother masking her disdain for me. (You can even see it in this early picture of us with our mother. She’s thinking “how can I get rid of her??”) Still, I worshiped her. In my eyes, she was beautiful and sophisticated, self-confident and talented. I remember thinking, “when I’m her age, maybe I’ll be that amazing.” Yet I could never catch up. No matter what age I became, she was always seven years older and seven years more awesome than me.

During my teen years, something shifted in our relationship. I’m not sure exactly how it happened, but we began to see each other as real people instead of as an enemy or an idol. We saw each other’s strengths and weaknesses more clearly and we became confidants and best friends.  

As an adult, Joann, who had been an artist for years, fell in love with community theater and became an actress, ultimately marrying a fellow actor, Mark. Then tragedy struck. Mark, who was seven years her junior, suddenly died of undiagnosed kidney disease at the age of thirty-eight. It was a terrible blow for our whole family—a family that had always seemed a little bit charmed with good health.

Shortly after Mark died, Joann visited me in Virginia. She said she’d been having some trouble walking. Her legs felt sluggish and she could no longer move quickly. I was a psychotherapist at the time and immediately jumped to the conclusion that she was having a psychosomatic reaction to her sudden widowhood. I wish that had been the case. What she was experiencing was an early manifestation of Multiple Sclerosis.

Her progressive form of MS didn’t respond to any of the available medications and she fought the disease hard as it stole her ability to walk. At first she used a cane to get around, but quickly progressed to a mobility scooter and later, an electric wheelchair. She married a man who saw the amazing woman behind the illness. Michael took good care of her for many years. During that time, she had to stop painting and–a harder loss to bear–she had to stop acting. She could still direct plays, though, and she took on that challenge with her usual energy.

When Michael died of cancer, Joann knew she couldn’t live alone. It was time to hire a twenty-four-hour aide. After a few false starts, she found Nina, who quickly became part of our family. The women and men who do that sort of work fill me with awe.

Not long after Joann’s initial diagnosis, I developed Rheumatoid Arthritis. So much for our family’s run of great health! Jo and I had many long conversations about living with chronic illness and about end-of-life issues. Joann would say “when I can no longer scratch my own nose, I want to be able to end my life.” She became a passionate advocate for death with dignity and she remains active in that fight today.

For years now, she has been unable to scratch her own nose. Nina feeds her, bathes her, rolls her over in bed. Joann is completely dependent on her. She can no longer type, so she uses voice recognition software on her computer. She’s still active in community theater, although directing plays has become difficult without the use of her hands to make notes. She reads voraciously, belongs to several book clubs, is working on a memoir, and remains active in fighting for legislation to promote death with dignity.

unnamed-1Why am I telling you about Joann? Because she’s the inspiration for my character Graham in Pretending to Dance, my latest novel on sale today. Graham has the same type of MS as Joann and the same can-do attitude—as well as the same desire to have control over the end of his life. I admire Graham’s strength and creativity and I especially admire how deeply he loves his daughter, Molly, the young protagonist in the story.

As I wrote Pretending to Dance, I worried that Joann might be offended or upset by my portrayal of Graham. I asked her to read an early draft and was relieved when she said she loved it. She felt as though I’d captured life with progressive MS well.

But Pretending to Dance is not a story about Multiple Sclerosis. It’s a story about the love between a father and daughter, the value of truth in a family, and making peace with the past. I’m grateful to Joann for the inspiration she gave me in creating Graham’s character and for her openness and honesty in helping me paint a realistic picture of his life.

Joann may have lost many of her physical abilities, but there is one thing about her that hasn’t changed in all these years: she is still my hero, now more than ever.

18 Comments

  1. Susan Peterson on October 6, 2015 at 10:02 am

    Your sister’s story really touched me. What resilience and courage she possesses! My brother was a paraplegic, and although he embraced life with a huge smile and heart laugh, he was also frustrated daily by the things he was not able to; eventually his injuries and constant infections took over his body, and he passed away when he was 45. My heart goes out to you and your sister. When I read The Dance Begins, Graham reminded me very much of my brother.

  2. Amy-Jean on October 6, 2015 at 10:16 am

    Reading this post through tears… My Mum has MS and she is the most determined person I know and I can see this story reflected in my Mum’s life and mine.
    I am so looking forward to Pretending to Dance and getting to know Graham and Molly.
    Thank you for always inspiring me to be positive.

  3. Nancy Boma on October 6, 2015 at 10:44 am

    What an inspiring and uplifting blog post! With that background information, I am more eager than ever to read this book! So looking forward to receiving it in the mail….maybe today!! Best wishes on your pub day!!!

  4. Joni on October 6, 2015 at 11:01 am

    I can’t even begin to tell you how your story with your sister is so touching! My older brother is a TBI person for the last 6 years – it is so heart breaking to be around him & he knows exactly what you are saying to him but he doesn’t have the ability to communicate back to you!

  5. Barbara Freier on October 6, 2015 at 12:00 pm

    Thank you for this post. You and your sister are both beautiful…

  6. Joann on October 6, 2015 at 12:59 pm

    I am smiling and I am tearing from your beautiful writing. And now I am totally in awe of my little sister. What a special woman and and even more special friend. Love you so much. Have a great pub day! Joann

    • Diane Chamberlain on October 6, 2015 at 1:08 pm

      love you back, Jo!

  7. Beverly on October 6, 2015 at 1:38 pm

    Your sister sounds amazing. I always wanted a sister but never got one. Both of you are lucky to have each other. Thank you for sharing the love for your sister and she for you in the comments. God bless you both.

  8. Elske Keeton on October 6, 2015 at 2:29 pm

    Amazing! I am so pleased you wrote this about you and your sister. I am sure that many authors write what they know and base characters on these aspects. You and your sister are both amazing people. Now I really can’t wait for the book! Best wishes to you both x

  9. maureen hinkins on October 6, 2015 at 3:09 pm

    What an amazing blog, thank you so much for sharing it with your devoted readers. I can’t wait to receive mycopy in the UK on the 8th. I am an only child and my husband also, so we have less ability to relate to family dynamics of having a sibling, which I would have loved as a child. We do have two sons and now also 3 grandsons, so feel very blessed. I look forward to reading your new book, Diane. xx

  10. Audrey Bonnell on October 6, 2015 at 5:59 pm

    The story of you and your sister is so special and now I am even more excited to read Pretending To Dance…You both are a great inspiration to all.

  11. Lyn on October 6, 2015 at 10:49 pm

    I’ve already read “Pretending To Dance” and I loved it so much! It’s such a pleasure to meet your sister thru this post. She is truly inspirational. Thank you Diane, for such a beautiful book. x

  12. Tanya @ Mom's Small Victories on October 6, 2015 at 10:56 pm

    What a lovely post about your sister Diane and what a beautifully contagious smile she has despite her illness.

  13. Carol Boyer on October 7, 2015 at 7:51 am

    Dear Diane, Your post had me tearing up as I read about your amazing sister. I too have a wonderful sister who is 7 years younger than I am. She always looked up to me growing up, and yes, there were the nuisance years when I am sure I was less than nice, yet today we are the best of friends, I love her more dearly every year.. Life hasn’t always been easy lately but she is the one who has supported me through many heartaches….I am in awe of your sisters courage and talent and yours as well…its all beautiful. I am anxious to read your book very soon. Thanks so much for sharing this post.

  14. Kathy on October 7, 2015 at 7:28 pm

    Hi Diane, you and your sister are my heroes to have the life you both have with what you are fighting daily in your life. My mom had MS so I,am aware of the sickness Joanne has to,go,through everyday so sad. She is so determined not to,let it get her down such a inspiration . I just got your new book can’t wait to read. I have read all your books and wait every year for the new one. You are my favorite author ,I love all of your books and when someone ask,me to recommend a good book, it’s always one of yours. Thank you for all your books and inspiration . Sincerely kathy

  15. Jo-Ann Pendolino on August 22, 2016 at 12:26 pm

    I have MS. Your story about your sister is so beautiful! Thank you for sharing! I’m hoping that someone will give me s copy of Pretending to Dance. I want to read that book so much. I’ve been very fortunate to have people send me some of your books. You are a wonderful author. I love the ones I read.

  16. Hilda Bokos on July 1, 2017 at 8:55 pm

    I stumbled upon this book looking for something to read. I was breathless when I read that Graham had Ms. My son was diagnosed with ms at 39 yrs old. It was Primary Progressive and he declined within five short years. You got all the symptoms right, but for him, his wife divorced him, asked him to not live with her and his four children. He lost his job, his peer connections and we, his elderly parents, took care of him. He chose to die because he did not want to live as he was and would become. HOspice helped him die, but he had to voluntarily stop eating and drinking. It was a hard, long death. You got it unbelievable right in your book. I felt that I was reading his story. I grieve still but rejoice that he no longer suffers.
    Hilda

    • Diane Chamberlain on July 1, 2017 at 9:08 pm

      Hilda, thank you for sharing your story. I’m going to email you personally. My sympathy on your terrible loss.

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