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for My Body of Knowledge

A well-rounded, honest discussion that is informative, offering various perspectives leading to the investigation of healing. Most interesting!!!!!!!!!!!!!

     - Ondrea and Stephen Levine, internationally known speakers and writers on spirituality and issues of death and dying, including Who Dies?


This is a fabulous anthology that is packed with truly excellent writing on disability - affirming and inspiring for those of us who live it and a valuable educational tool for others in our lives.

     - Sharon Wachsler, Editor, Breath & Shadow: A Journal of Disability Culture and Literature

Helpful...Various authors share what they have learned from their bodies with humor, honor and poignancy.  Surely we can learn from their testimonies, for almost all of us suffer from chronic limitations of one sort or another, whether they are medically diagnosed conditions or not.

- June O'Connor, Ph.D., "Dear June" column, Catholic Digest Magazine

If you or your loved ones are coping with illness or disability, this book is a must-read! This book leads the reader through this process - from affliction, to isolation, to integration, and all the other steps in between - all through the voices of those who have walked this path before. You cannot read this book and be unmoved, either through a greater recognition of yourself in these stories or a greater understanding of those who live with illness or diisability.  A book you will keep forever and reach for again and again when your spirit needs rekindling.

- C. Statucki, Santa Barbara, CA

This book is for anybody who has a body, especially those of us who may have discovered that our body can't do what it once could. I especially appreciate the different points of view and subject matter, the sense that this project is a circle of people with varied life experience who are contributing to a picture of what it means to be human and challenged that is larger and more inclusive than the sum of its parts.

The selection of form and tone gives a suggestion of the flexibility and resourcefulness that are called out in each of us in dealing with our individual challenges.  Kudos!

- Will Walker, San Francisco, CA

The personal essays and poetry in My Body of Knowledge are not only educational in terms of learning about how people live with disability and chronic illness, but also well written and moving. From  well-known authors such as Rachel Naomi Remen and Molly Ivins, to "everyday people" like the editors, the personal experiences shared in the book are poignant and full of truth and love.

As a cancer survivor making my way through the world, I was heartened by reading the authors' writings. So many of their struggles resonated with my own - from entering an unknown, uncertain world to the emotions I've felt: grief, anger, hope, and even humor. This book is a "must read" for anyone living with the challenges of a disability or chronic illness, or anyone loving a person with a chronic illness or disability.

- Marie Munson, Oakland, CA

This reader would give a standing ovation to the editors for publishing a book that is so needed.  As a burn survivor, as I read this book I felt like I was talking to each and every one of the contributors. In each story there was something I could relate to, whether it was doctors not listening, people staring, or individuals who said something meaningless.

As a psychologist and college instructor for nurses, I highly recommend this book to my students and other therapists.  Great job!

- Dr. Carol Hoyer, Newport News, VA

from My Body of Knowledge

Step by Step

are 26 stairs leading up to my friend Marie's apartment, where I have been invited to dinner.  Marie is the best cook I know.  She makes chili and rhubarb pie and chocolate chip cookies.  But she lives on the top floor of her apartment.

I open Marie's front gate, which is interlaced with the flowering white buds of a potato vine.  I know it is a potato vine only because I planted three of them in my front yard two years ago.  One of the them is dead, but the other two are thriving.

Eight steps across the gray cement entryway and I begin my ascent.  The first time I visited Marie I thought I might have to drop the workshop she was hosting - there was too little parking and too many stairs. The sidewalk was slick with rain, and the climb to her front door felt like a trek up Mount Everest.

I start with my left foot, the stronger of my legs.  My left calf is shapely and rounded, like a woman who has grown up climbing hills.  My right calf has become withered and thin, blotches of sunken skin where muscle should be.  My massage therapist says if I walk barefoot on the beach it will help build up those muscles.  I hope he is right.

I purposefully pound my white canvas sneakers on top of each black-checkered stair, creating a thumping noise, as though I'm trying to squish a cockroach. I wear sneakers that are light because the weight of a heavy shoe feels like something more to carry, another burden for my muscles to absorb.  My friend Andrew, who also has muscular dystrophy, says that high-top sneakers help steady his walk.  But the last time I saw him he was having trouble getting up the slope of a curb.

The slap of sole to cement makes me feel more grounded, more in touch with my lower limbs.  Too often I float in my mind, far away from the prison of my body, far away from the tightness in my hip joints and the fatigue in my legs. Stomping my feet on the ground draws me down into my body and I feel strong and powerful and fierce.

I lift my thighs as high as they go, trying to bring them somewhere near my chest.  I can barely life them to my stomach.  But still, I can lift them.  I'm stronger than most of the people who attend my muscular dystrophy support group.  I remember the former firefighter who looked up at me from his wheelchair and said, "God, I wish I could move like you."

The mental game begins.  I will not touch the iron handrail.  This would be to give in - to the disease, to my weakness.  Soon my body would forget what it has been able to do.  I cannot let it forget.  My shoulders sway to the left, then to the right with each step, my upper body compensating for the weakness in my pelvis and gluteus medius.  Before Dr. Schmidt diagnosed me when I was 13, I didn't know where the gluteus medius muscle was.  He said muscular dystrophy is degenerative, that I should stay active but "don't overdo it."  Every year I go to his office and he pushes against my arms and asks me to flex my ankles and walk on my toes.  Then he marks numbers in my medical file and tells me to come back next year.

I will not grab the handrail.  It's right there, to my left.  it would be so easy to reach out and touch its cold green metal.  I could pull myself up a bit and steady my gait.  But I need to practice balance for those times when there isn't a handrail to support me - like when I went with my niece to one of those stadium-style theaters.

I reach the platform between the second and third floors and rest at the doormat that says "Welcome."  I try to keep the momentum going, but fatigue has settled in.  My body slows down, as though I'm walking through a fog of thick humidity.  I remember heavy summer days when the heat felt like a child clinging to my legs.  That sensation assaults me now, even though the air is cool.  My thighs fill with lead.  My right foot lands on its outer rim.  Did I used to walk more flat-footed?  Is this the first sign that my ankles are becoming weaker?

Only one more flight, I tell myself.  The corridor is dark and winds to the right.  I can do this.  One, two, three, four . . . I count in my head to distract myself from the effort of my body.  I don't know when I started counting steps.  Maybe four or five years ago when a stroll to the corner store became a series of calculated movements.  One step in front of the other, heel, toe, heel, toe.

I reach Marie's apartment.  It smells of chili and garlic bread.  Marie bounces toward me and throws open her arms. I am short of breath when she hugs me hello.  I smile and lean into her shoulder.

"Hey look!  No hands!"  This is what I used to scream to my brother when I could still ride a bicycle.  Today I climbed Marie's 26 stairs - and I didn't touch the handrail.

-Karen Myers