We always love to discover people in the diabetes community who are doing (unusually) great things.
That's why it was so exciting to learn about the work of fellow online D-Advocate Marie Smith, who blogs over at Joy Benchmarks. She was diagnosed with type 1 as an adult in July 2011, and just celebrated her first diaversary last summer!
Just about that time, Marie traveled to Indianapolis for a D-Meetup and I had the pleasure of meeting her for the first time in real life. It was a small group, so I had ample chance to sit and chat with Marie bout her beloved cello and how she was using it to help inspire other people. Her brand of "cello advocacy," or live musical therapy, is pretty unique.
Our correspondent Mike Lawson also knows Marie well from the online world, so he too was excited to learn more about her story and be able to share it here:
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Fortunately for us, those health issues paved the way for an incredible advocate to be born for the Diabetes Community and broader e-Patient world, leading Marie to create what's known as the University of Catastrophe -- an online "college program" for people hit with health disasters -- and to use her lifelong passion for playing a cello to educate and entertain people about her multiple autoimmune conditions and a rare form of cancer.
Marie's journey began on April 15, 1997, the day she woke up in the morning and couldn't see out of her right eye.
Sixteen doctors and more than a year later, she was still in pain and unable to see when she went to a pain specialist who did something that Marie says was unorthodox.
"The 17th doctor did something revolutionary," she said. "He got a book off the shelf and looked up my symptoms." That was when Marie was told that she had a rare neuromuscular disease. After some tests she was diagnosed with myasthenia gravis (MG), a rare autoimmune disorder affecting the eye muscles and the nerves that control them. The doc gave her a prescription for a drug called Mestinon and she says that within 30 minutes of taking it, the year-long pain in her eye disappeared and her vision returned (!)
"The other 16 doctors assumed my problem was in my head and I was making things up. That's all I can gather from their dismissive responses. All of them asked me if I was under stress," Marie says, noting that MG is not usually a doctor's daily radar screen. MG is so rare that most doctors will see one MG patient in their entire career.
"I was the one. And they missed it," she says. "I have PTSD (post-traumatic stress disorder) from this experience. Being in that much pain and having no one listen harmed me forever."
Her takeaway message for patients is: If the doctor's opinion doesn't fit, seek another. Trust your body and follow your intuition. I am alive because I did. And for doctor's: Rare diseases are real. They are out there and not in your patient's imagination. If you can't diagnose what is wrong please refer your patient to a diagnostician. And then follow up with a phone call. No one deserves to spend 14 months in agony without anyone listening!
Courses in Catastrophic Events
But even after finally receiving the right drug to alleviate her pain, Marie wasn't graduating from The University of Catastrophe just yet. In fact, she was just merely starting her "sophomore year."
It turns out that myasthenia gravis is sometimes an early warning sign of a rare type of cancer. Just two weeks after she received the MG diagnosis, Marie learned that she had developed thymus gland cancer; there was a tumor in her chest just above her heart.
On August 21, 1998, at the age of 29, Marie went under the knife to remove the cancerous tumor. The surgery was an intense one that included sawing through her breastbone, butterflying her like a chicken (some might call it a "median sternotomy," but I think the chicken image works just fine), and putting her back together again.
On the day after the surgery, Marie's heart started to beat erratically and she watched doctors and nurses scramble around her in the ER. She remembers everything fading away and being in peace. She felt calm and quiet. She died. For a few minutes before the doctors shocked her heart back to life...
"Death is easy," Marie said. "It's a lot like letting go of a string of a balloon." Marie says she remembers consciously deciding to come back to life. "I remember thinking that I have to head back because I have a child. I promised her that I would raise her."
Her health education continued, and Marie's "junior year" began when her MG started to progress in the spring of 2005 and made it difficult for her to walk. She also struggled to chew and swallow food. At this time she had already started her weekly chemotherapy treatments (which she still does to this day). She ended up losing her hair and needing a wheel chair to get around.
Life went on coping with those health hurdles for a number of years, but last year she hit yet another speed bump on her path toward graduation from the University of Catastrophe.
More than a dozen years after everything started, the 42-year-old Marie was sitting at a restaurant in 2011 with her husband and daughter, when suddenly the University of Catastrophe struck again. During the time that it took her husband and daughter to each finish one Diet Pepsi, Marie had gulped down 9 glasses of iced tea. Something was wrong.
After a brief visit to the ER (for an unrelated tooth infection), Marie discovered that she also had type 1 diabetes (!) Another shoe had dropped in her proverbial medical Odyssey.
Marie says she hasn't yet "graduated," but she has written a book called Life Music: Lessons Learned At The University of Catastrophy. And she admits being emotionally, spiritually and physically exhausted and ready to "graduate."
"I've been on permanent chemo since 2005. I'm sick of being sick," she said. "I don't know if I can do this much longer."
Through all of these health challenges, Marie has kept up a passion she'd had since her childhood: playing the cello. This has helped her not only to cope herself, but also to help others who need hope and inspiration.
Coping via Cello
Marie has been playing the cello since age 9, and has always loved the experience of that musical instrument. When she was 12, she got an antique cello that has become like a real friend through the years. She even has a name for him: Sir Barclay Winthrop III, whom she fondly refers to as "Sir Barclay." He's now 50 years old, and they've been together for three decades.
During her cancer recovery time about seven years ago, Marie started developing a performance piece with Sir Barclay that described life with a disability. She's performed the piece in front of small groups and larger gatherings of 2,000 people at small community centers, churches, rotary clubs and for women's groups. She created a show called Weaving: An Inspirational Journey about MG, which addresses cancer and overall living well. She's blogged about it, and Marie says she's performed that piece more than 20 times in Illinois and Wisconsin for general audiences.
But early last year, Sir Barclay was damaged (he "broke his neck") when a heavy door closed on him, causing $300 worth of damage. That was devastating for Marie, who felt like her longtime friend had been badly hurt and she couldn't afford to help get him healed.
"My problem was that my cello is how I make money. When he was broken, I couldn't play gigs. No gigs means no money. No money means no cello." When Marie mentioned this conundrum on her blog, the Diabetes Online Community rallied by donating money. Some DOCers also contributed in person at a D-Meetup last summer.
With all this help, she was able to pay for Sir Barclay's repairs, and now she's once again set her sights on using her cello for health awareness and advocacy. She's currently polishing off a brand new piece that she's calling, New Beginnings: A Life Mosiac. Just like her previous show, Marie says this hour-long show will flow between short monologues and pieces of solo cello music. She's mostly playing her own musical compositions, interspersed with talking about her own "adventures" as a disabled person and enduring her health issues -- including the challenges of adding diabetes into her life.
Her plan is to launch this tour in the summer, possibly for her second diaversary on July 24, 2013. All she needs is a PA system and a chair, and people who want to hear her story with music.
"Picking up the pieces isn't enough for me. I need to create a mosaic out of them. I need for my life to be whole and strong," Marie says. "For me, music has always spoken the truth where words have failed. I'll be talking about the process of creating a new life, one that has room for chronic illness, and so much more. Diabetes myths and disability myths will be challenged with laughter."
Marie laughs about how much she loves playing cello, saying, "There's a reason my Twitter handle is @cellobard! If I was born in a different century, I would have been a bard. I'd have been the traveling story teller who played music for people. I used to dream about being a bard when I was a kid. Now... I am one. I want to travel and share life and strength with as many people as possible."
What an inspiration! We hope we get to see Marie play her cello one day, and when that time comes we'll certainly be sitting up close listening for lessons that can only come from a place like the University of Catastrophe.