As Halloween approaches, we think about costumes and heroes. My nephew Tyson, who is now 9, once got an Indiana Jones costume for Halloween–brown leather shoes, bomber jacket, fedora, whip, and all. A few months ago he wore it to school. The other kids had no idea who he was but his teacher told him, “Tyson, you’re the coolest kid ever.” Tyson doesn’t care about what other people think, and he enjoys being Indiana Jones once in a while. As adults, we often lose our child-like imagination. I think this is so important to feeling alive as the worries of everyday life and pain and fatigue threaten our sanity.
Annette Funicello: My Neuromuscular Autoimmune Hero
When I was a little girl, I wanted to be Annette Funicello in all The Beach Party movies. I loved watching her dance on the beach with Frankie Avalon. She looked like was having fun. She was the right amount of wholesome for me–not too wholesome like Doris Day and not too naughty like Bridget Bardot. (Sorry if I’ve offended any Doris or Bridget fans. Everyone has different tastes, and that’s a good thing.) Anyway, when I was 24-years old and climbing a long flight of stairs at work, I started falling. And falling. I couldn’t feel anything below my waist.. My mind kept saying “get up” but my body wasn’t following. As I was laying there for a good five minutes I thought to myself,
“Oh no! Did I want to be like Annette Funicello so much that I got her disease, Multiple Sclerosis (MS)? I wanted her hair and curves circa 1962–not her neurological disorder.”
Even before I got my Myasthenia Gravis (MG) diagnosis, I knew I had a neuromuscular disease–that’s when the mind says “get up!” and the body says, “eh, whatever.” There’s a lot of overlap between MS and MG symptoms, which is why the diseases are often confused for each other. The overlapping symptoms include: loss of balance, difficulty walking, fatigue, numbness, and clumsiness, and weakness in the arms and legs.
A Mental Vacation
Back then in 2008 I vowed that if I ever survived the Myasthenia (I was given a 50/50 chance of living by doctors), I would become Annette Funicello the right way. A few years later I got a wig, some vintage clothes, and even a 1960s style swimsuit. I dressed like Annette two consecutive Christmases (dress, not swimsuit). And it felt great! For one moment in time, I could put aside my daily stressors–as much as it is possible to take a mental vacation from chronic pain. For one night, I could imagine it was 1962 and I was doing The Twist with Frankie Avalon. My wig still sits in my closet. And I can’t wait for the next time I wear it, which won’t be Halloween.
UPDATE: In honor of Annette Funicello’s passing on April 8, 2013, I added a Tribute to America’s Favorite Mousketeer and my autoimmune hero here: