Dancing at the River's Edge: A patient and her doctor negotiate life with chronic illness by Alida Brill & Michael D. Lockshin, MD is an easy read intellectually, but difficult on the heart.
A few disclosures: 1) I haven't read the entire book. Sadly my life is so busy that if I did read the whole book you wouldn't get a review until summer. BUT I do feel I have read enough to give you an honest review; 2) Alida & I were in the Progressive Women's Voices program together where we nurtured a wonderful friendship.
Which is why when she offered me a review copy of her book I was scared. I was scared that it wouldn't be a good read for me. Would I have the courage to tell her the truth? Luckily I don't have to cross that bridge.
I prefer to not think of myself as someone with chronic disease. Those are people with chronic fatigue syndrome or a mystery illness that keeps them from working or enjoying the weekend with family. In reality I am someone with a chronic disease and I know a few are on deck just waiting to join the game.
Since at least age 7 I've been on some sort of allergy pill for hayfever. Sneezine, runny nose, itchy eyes & occasional bloody noces were just life not a disease. This view may stem from being poor and going to a health clinic instead of a doctor's office. You don't go there with tales of sneezing every time the season changes. The only time I recall seeing a doctor was when I had strep or my sister broke some bone.
But after having gestational diabetes and watching my mother die so young, I began reflecting on her own journey of chronic disease. I was barely in high school when she was diagnosed with rheumatoid arthritis - me about 13, her 31. Holy shit! I'm older than that already...and I can feel it. I've forced myself to think of people with chronic disease as someone other than me out of fear. Fear that I won't be able to live my life the way I want.
And that's just where Dancing at the River's Edge fits into my life, perhaps into yours. Alida has lived a full life, not the life one aspires to with her many trips to the hospital, but a life rich enough to be proud of. Upon being diagnosed with illness after illness, she did not sequester herself away from the world, even if some in her life might have wanted it that way. Her life story shows that even those of us with chronic diseases can live full and happy lives.
At the same time, Dancing also gives us a peek into our doctor's head. Alida's long-time doctor, Dr. Lockshin, takes his turn in telling his side of the story - both as Alida's provider, but also as a doctor who knows that most of his patients will never recover or get well. Kids don't grow up wishing to be doctors of people they can't cure. It's the cure that propels the young women I work with through hours of organic chemistry. I don't know if they have ever thought of working with people who most likely will never know a cure. But Dr. Lockshin takes us into those dark places for doctors.
In the end, Dancing is a book of hope. Hope that despite the pills, the IVs, the hours spent on that damn paper-lined table that we will still have full and rich lives. That we are still owed love and respect. That our doctors are struggling with us as well. This fact may scare some, but I am actually comforted by this tidbit. It flattens the playing field. It makes me think that perhaps some of us are partners in healing, not just receivers of wisdom in the form of a pill.
Alida will be on the Bonnie Hunt show TOMORROW! Set your DVRs!
You can purchase Dancing from an indie bookstore or Powells.