A Dreamer With MS – Annette Funicello’s Legacy

Two weeks ago today the world lost Annette Funicello.  For most people my age, Annette’s name is vaguely familiar, but many of us don’t even know why we recognize her name.  For our parents and grandparents however, Annette is the little girl who was handpicked by Walt Disney at the ripe age of 13, to become one of the first stars of The Mickey Mouse Club.  She was a stunning young starlet as a Mouseketeer and is remembered at later points in her career as the beach beauty who starred in films with Frankie Avalon.  Annette had a range of talents – she was a graceful dancer, a successful singer with songs in the Top 40 hit list, and had an expansive career as an actress in both TV and film.  

Annette represents the American dream, which I am very aware of as I sit in my Los Angeles apartment and think of all the people who move here hoping to be “discovered.”  To these aspiring performers, Annette’s story and achievements serve as inspiration.

For others though, Annette represents fear and anxiety.  Although I watched reruns of The Mickey Mouse Club, I have no desire to achieve Hollywood fame, and I am certainly too young to have remembered Annette in her beach films or her Disney feature films.  Instead, I connect to this dazzling woman because of her diagnosis of MS in 1987.

For those reading this who have MS or another chronic illness – think about the thoughts and feelings you had when you got the news of your diagnosis.  Remember the fears about how this would impact your life.  I realize that asking you to do this brings up some emotions but I invite you to go there with me so that we can appreciate just how strong Annette Funicello was.  Annette was a performer and she was diagnosed with a disease that would later prove to rob her of her physical abilities.  Her passion for dance started far earlier than age 13 and she showed the world just how far her talents could go as an actress and a singer.  Her life was performance in one setting or another.  And she was given a disease that was destined to take away her ability to perform.

In 1987 I was a 1 year old and there was not any treatment available for MS other than the reactive action of taking steroids once symptoms become severe.  It was simply a different world for patients.  The diagnosis of MS that I received 11 years later, was an entirely different diagnosis than Annette received.  The diagnosis that any of us receive now is different…and not because each case of MS is different.  In my blog post The New World of MS Treatment several weeks ago, I described what I imagined a diagnosis in the ‘80s would sound and feel like.  Well folks, we’re not talking imagination anymore.  Annette’s diagnosis was different because a diagnosis back then came without hope, without information, and without any explanation.  

Remarkably, when Annette’s career as a performer was impacted by the debilitating nature of her disease, she did not stop working and she did not tire.  Nope, “America’s Sweetheart” founded the Annette Funicello Research Fund for Neurological Diseases.  She also forged new outlets for her creative talent by starting the Annette Funicello Collectible Bear Company to help fund the efforts of her Research Fund.  Annette designed several bears that were sold internationally as collector’s items.  Her creative talents truly knew no bounds, and they weren’t about to be silenced by a disease.

When I was 17 years old, Annette and her daughter Gina Portman somehow learned about my personal fight against MS and my efforts to raise money to advance research.  Annette honored me by creating the KaleyBear which was sold as part of Annette’s Angel Bear collection with a portion of the proceeds supporting the National MS Society.  

As you can imagine, this was an incredibly high point in my life.  I knew who Annette was and am still amazed that my diagnosis at age 12 led me to cross paths with  this remarkable woman who was diagnosed with MS when I was just a 1 year old.  When I was a little girl I was also a dancer and I loved watching Annette in reruns.  I stopped dancing when I was diagnosed, which was around the same age Annette was when her performance career took off.  It was such a surprise when the National MS Society contacted me about Annette’s desire to honor me with one of her bears.

By the time Annette collaborated with bear designer Sandy Knapp to create the KaleyBear, her abilities were already greatly limited.  Her desire to remain out of the public eye at that point could have translated into fear within me – a 17 year old preparing to choose a path for college which would hopefully lead to a lifelong career.  I wasn’t scared by Annette’s condition though or her inability to meet me in person.  In my brief interactions with Annette’s daughter, Gina, all I ever felt was warmth and hope.  Gina addressed any possible comparison between the severity of our illnesses head on.  It was clear that the timing of my diagnosis brought with it the gift of a much better prognosis than Annette’s, and it was apparent that Annette and Gina only hoped for a life filled with health and success for me.

Although I personally never experienced any fears as a result of Annette’s physical state, those around me did. I chose to reflect upon the magnitude of strength that this woman had in order to keep going in some way, to continue to release her creativity, and to continue to touch the world…which of course led to her touching my life.  Even though I’m the one who was touched by her and am the one facing this disease, Annette’s death brought with it the reminder of how Annette’s experiences affected those around me and will continue to do so.

When Annette died, I immediately read the news articles.  I spent some time in those first moments of the news just reflecting upon her.  I thanked G-d for the life that she led and the way she touched my life.  I thanked G-d that she was no longer suffering and prayed that her death was a smooth and peaceful transition for her.  I prayed for strength and comfort for her family, who were so warm to me at 17 years old.  I planned to just keep the thoughts and feelings inside me for a while, processing them in my own silent way.

While that was my plan, I had not taken into consideration other people!  In the first 24 hours following the news of Annette’s death, I was flooded with text messages, emails, and FB messages about the news.  There was a range of reactions from “did you hear about Annette?” to “if she died from MS, what does this mean for you?!”

The two most appropriate and respectful reactions (for both myself and Annette) were an email that acknowledged that I will obviously reflect upon her death in the context of my own illness which included condolences for myself and the MS patient community, and a conversation initiated by a co-worker who very courageously asked what my prognosis is and checked to see if I needed any extra support with Annette’s passing in case it in any way negatively affected my ability to cope with my own illness.

Whether people reacted appropriately or not, it was clear to me that this moment in history was not going to be a silent moment of reflection and appreciation in my life.  I was seeing that Annette’s death was activating anxieties of people all around me at all different levels of closeness.  I quickly discovered that the best way to address this phenomenon was to first clarify the difference in our prognoses because of the timing of our diagnoses, and then secondly, to speak to Annette’s incredible legacy in the world and in my life.

When anyone dies from complications with MS (a concept that requires an entire blog post to explain) it stirs up fear and discomfort in someone with MS and those around them.  When it is someone famous who dies in this way, especially someone whose fame came from such a physical talent like singing, dancing, and acting, we seem to experience those fears tenfold.  Our society turns Hollywood stars into invincible idols, and when someone who has been named “America’s Sweetheart” turns out to be mortal, our deepest fears are stirred.  

Ironically, this just makes Annette’s legacy on this earth that much more powerful.  What a woman.  She holds the hearts of baby boomers as an innocent Mouseketeer, the beach party babe, and the girl who was “discovered” and who achieved the “American Dream.”  She embodies the worst nightmare of those of us living with chronic illness and holds the wrung hands and racing hearts of all of our loved ones.  What a contrast.  To evoke hope and pain, fear and inspiration, all in one lifetime is astounding.  

At the end of the Annette’s Research Fund PSA  (www.AnnetteConnection.com or PSA on YouTube) Shelley Fabares asks the public to make all of Annette’s dreams come true by supporting research.  Imagine that – a woman who was personally discovered by Walt Disney, had a career that thousands of little girls will only ever dream of, was still dreaming of more accomplishments and larger milestones in her life.  No matter what the context, Annette reminds us to dream.

My hope is that Annette’s ultimate legacy will not be one of irony or contradiction.  I hope that upon reflection, as a society, and as a patient community, we will be strengthened when we think of her rather than fearful.  We will realize how hard she fought, if it couldn’t be to dance, it was to fund research, and if it couldn’t be to personally meet newly diagnosed patients, it was to touch the life of a teenager facing this illness through something as sweet and comforting as a bear.

I taught myself to dance again when I was in college with the help of two incredible teachers whose only knowledge of MS was Annette Funicello because of their own Hollywood fame.  When Jay Fuentes and Miranda Garrison took me on as a dance student, they knew full well how MS changed Annette’s life but they didn’t pay attention to those fears and only ever encouraged me to enhance control of my body and become a dancer again.  If I ever lose the ability to do the things I am passionate about, I am not sure what attitude I would have or what path I would then take in my life.  While I hope that I will never see that day, I also pray that I would have the strength Annette did to redirect her incredible energy, talent, and goodness into something which was so meaningful and still allowed her to utilize her creative passions to impact the world.

May her memory be a blessing.  

Leave a reply

Your email address will not be published.