The first time I learned about the existence of Marie was when I saw her on twitter during a DSMA tweet chat. I remember her twitter handle (@CelloBard) caught my eye because I thought it was clever and artistic, and she seemed like a bubbly person. The stalker in me decided to check her blog, Joy Benchmarks; the first thing I noticed was the picture on the right, and I thought that was the loveliest cello bow I’d ever seen. I read some of her entries, learned about her struggle with myasthenia gravis, cancer and more recently, type 1 diabetes. My first reaction was to wonder how on earth could she handle all that, and the answer to that came a few weeks later, when I discovered Marie lived in the Chicago area and we planned a d-meetup.
We met at Starbucks one morning back in March 2012, I thought she was hilarious and inspiring. We clicked right away and what I didn’t know that day is that she was going to become one of the most important people who were going to be with me through a very difficult time. We became friends, we made plans for coffee, breakfasts, walks around the forest preserves… she is a joy to be around, just like her blog’s name. And yes, she struggles, she wants to give up sometimes, she gets sad, she gets frustrated, but somehow she manages to inject enthusiasm into every person she meets. And she talks about all that in her book Life Music: Lessons Learned At The University of Catastrophe.
Reading Marie’s story was a breath of fresh air. I enjoyed it very much, and being her friend made the experience even better because as I read, I could imagine what her reactions and faces would be to different life situations. Marie opens up about her illnesses in a very heartbreaking way, but still she approaches everything with a great sense of humor. And it all fits in this quote from her book: “Everyone spends part of their lives up a creek without a paddle. No one is exempt from the journey. Some people get wet for a little while and then they find their way to shore again. They shake themselves off, go on with their lives, and laugh about it.”
Life Music: Lessons Learned At The University of Catastrophe is about learning to keep the music playing even when life wants to throw us a punch. And that’s why Marie has a whole chapter dedicated to her most precious material possession: Her cello, Sir Barclay (whose longer name I can’t recall now). Marie is a talented musician, and I think this chapter of the book is my favorite one. It’s about how much joy Sir Barclay brings to her and how much it means to her to play it. There’s also a chapter about her dog that is hilarious, but I really want you to read the book so I won’t say anymore.
For me, Marie is more than that book. She’s an amazing friend, one of the smartest people I know, a buddy I can go on road trips with and sing The Beatles all the way to our destination, the one friend I laugh about high BGs with to the point of mockery, and much more. But most of all, she’s a constant reminder that illness doesn’t define us. And she puts it very simple, “I am not a broken body. I’m me and I’m OK. […] Being well has more to do with what’s going on inside my soul, than how my body works.”
Marie, this is an overdue post that I promised I was going to write a while ago. I admire you, I respect you, and I’m extremely grateful for having you in my life.