Alida Brill

I prefer to not think of myself as someone with chronic disease. 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. 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. 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. 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.

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.


**excerpted from my full review on my blog.… (mer)

Patient Alida Brill and her physician Michael Lockshin, MD collaborated on the creation of this book. It's divided into sections written by each of them, with more from Alida than Dr. Lockshin.

Alida Brill has lived with chronic illness since her teens. And in her career she's fought for women's rights and for women's issues. She has lived a full and rewarding life, despite the incredible daily challenge of her illness. I highlighted countless passages from Alida as I read. She is eloquent and tremendously insightful about the world of chronic illness.

Her connection of the desire for love and support with feminism and the male ego is nothing short of brilliant. She writes, "Chronic illness in a female partner gnaws at a man’s sense of control, his sense of power, his sense of being victorious against danger. Call it what you will, and if you wish, go ahead and accuse me of being politically incorrect. Whatever you want to label my remarks, it remains the case that a chronically ill woman threatens a man’s sense of himself, and calls into question his feelings of success as a man, a lover, a “white knight.”"

I also appreciated Alida's section on the tendency of patients with chronic illnesses to blame themselves for their illness. And why we shouldn't!

The sections from Dr. Lockshin didn't connect as strongly for me, perhaps because I'm a patient rather than physician. I found him to be caring and knowledgeable, but certainly not transcendent like Alida. Essentially, he's cultured and curmudgeonly older man with genuinely sincere intentions.

Here's an example: "Powerful thing this, the training and license that grant me the ability to destroy or sustain another’s dream. Sobering and frightening and nauseating thing this, the knowledge that I sometimes actually do exercise this power. Humbling thing this, to be able to use this power, once in a while, to salvage lethal mistakes, made seriatim, on a cheeky Puerto Rican kid with a tattoo."

I've read many books about living with chronic illness. I'm sure this will remain one of my favorites for a long time!

Thanks to NetGalley, Schaffner Press, and the authors for the opportunity to read a free digital copy in exchange for an honest review.
… (mer)