Monday, May 24, 2010

Miss Mary

One person who deserves a post all her own is Mary Bowers, the girl I referred to as my "camper, friend and full-time hero" in my previous entry "A Special Place For Special Kids."

In a recent e-mail exchange, Mary told me she was writing about Buddhist philosophy and bioethics for a college course. A real under-achiever, that one ;) She wrote, "In my paper I talked about how, for somebody with a chronic illness, healing isn't about 'getting better. Instead, it is about reaching a relative state of physical well being and a sustainable state of mind." She also shared this amazing quote with me that she came across during her research and I had to pass it along to you all.
"A chronic condition requires perpetual healing actively constructed by the person moment to moment, day to day. This kind of healing involves a transformation of the whole person, whose attitude toward life changes from despair and frustration to liveliness and peace in spite of the continuing presence of illness or disability."

This is how Mary leads her life...with liveliness and peace. She is the type of person I'm just better for knowing and, from day one, I knew she was special. Hey, who else brings their hermit crab named Bob to camp? Whether we were boating or swimming or just sitting around shooting the breeze, we clicked from the start and I've been inspired by her ever since.

Mary was diagnosed at 18 months old with a form of Muscular Dystrophy called "Nemaline Myopathy" which, as you'll read, is a neuromuscular disorder that causes intense muscle weakness and a slew of other challenges. I have known Mary since she was about 10 or 11 and she has always handled her illness like a trooper- with humor, acceptance, patience and grace. Although her voice may not be loud, her personality burns brighter than most.

As far back as I can remember, she was always reading. She'd bring 3 or 4 books to camp and devoured them all. Through the years, Mary is someone I could always count on for a book recommendation. I don't doubt this made her vocabulary what it is today and, although I was impressed by her in grade school, her intelligence, wit and passion for learning continues to astound me today as she wraps up her first year of college (where exactly has the time gone?)

Among her many talents, wouldn't you agree that Mary's mosaics are stunning? (you still owe me one, Bowers). To me, they reflect the way she chooses to see the world - as a beautiful puzzle of sorts. She has a hunger for knowledge and experience and there's just so much that she appreciates - people from all walks of life, places she's seen and places she's only read about. In the past two years, I've seen my "little camper Mary" excel in high school honors courses, graduate, start at a great college, develop her identity and just blossom.

About 5 years ago, I started writing a book about kids and young adults living with chronic illness and disability. Mary was naturally the first person I interviewed. While the project has taken a temporary (albeit long) hiatus, I still have her answers here which blow me away today even more than the first time I read them. Allow me to share some highlights...

Maya: What is something you'd like to tell someone who has been newly diagnosed? What would your advice be?
Mary: It's definitely scary to have Muscular Dystrophy. After all, what are you supposed to do when your own lungs are suffocating you? Where do you go when your own body is the enemy? The important thing to remember is that you can work around it because you are strong.

Maya: Where do you get your strength?
Mary: I get my strength from my family and friends,from the music I play and books I read, and from the places I go. (the photo to the right is Mary getting a smooch from one of her wonderful sisters, Sarah. To the left is a beautiful shot of Mary and her mom Pam in Paris!). )

Maya:What has been the most helpful or comforting to you?
Mary:I take the most comfort in doing every day things that I know I'm good at and can do without any help (like reading, listening to or playing music, or talking to my friends). It's always reassuring to find aspects of life which remain completely free of MD.

Maya:What is the most difficult symptom to deal with? What is the easiest symptom to cope with?
Mary:The most difficult symptom for me is the loss of muscle mass in my face. It's frustrating to not be able to talk or smile "correctly." The easiest symptom to deal with is the looseness in my joints. All I have to do is avoid situations where there is a high risk of pulling my arms water-skiing and pole-vaulting are out.
(Gotta love that Mary humor, huh?)

Maya: If you could send one message to all the doctors around the world, what would it be?
Mary:I'd remind them that what is in someone's medical best interest is not always most beneficial to their overall health. Also, my name is Mary, not patient #19 at 3:30pm.

Maya:If you could change one thing in the world, what would it be? Why?
Mary:I'd ask people to be more accepting of each other, not necessarily to like each other, but at least to refrain from doing or saying things that can permanently hurt someone else.

5 years later, Mary is even stronger, wiser and more wonderful. She's a woman who I'm lucky and proud to call my friend...



  1. what an amazing spirit. thank you so much for sharing her inspiring story.

  2. i think the fact that you see all this in me says more about you than it does about me Maya hahah, thank you so much anyway. i love you kind of a lot!!

  3. Wow! How lucky for you to have Mary in your life. She is truly an inspiration. Actually, after looking over your blog, you are too!

  4. Jodi: I forgot to tell you about my book when we met :) Our ideas are sort of connected...celebrating people living well with illness (but you through your beautiful photos and me through my words)

    Mary: I love you more

    Cathy: Thank you so much - for your words, but also for taking the time to read my blog. Mary is a gem, you're right. Really look forward to more of your posts !

  5. AnonymousMay 26, 2010

    wow, I really really enjoyed reading this post. The way Mary describes the healing process resonates so strongly with me. I'm glad you finally put this concept into such an elegant blog post! Thanks for connecting with me too! take care, robin

  6. Maya, what a beautiful post! I really admire Mary's outlook and sense of humor. She has something to teach all of us. And her mosaics are she selling them (she should)! This was such a feel-good entry. Thanks for sharing Mary's story - and great pictures!

  7. You know I love me some Mary Bowers!!! Watching her grow up throughout all of those many many years at camp has been a blessing and a privileged!

  8. very inspiring. I make it a habit to read inspring stories like this on a regular basis. It's like therapy for me. Even reading case studies in books of people learning to cope with illnesses helps- one book I like is "Spontaneous Healing" by Dr. Weil. Anyway I am learning to cope myself, just being diagnosed with RA at age 34. I have a 2 yr old so as you can imagine I can't have many "off" days. THanks for Mary's story.