… When I was diagnosed with FSH muscular dystrophy, I was introduced to the word “degenerative.” Every doctor I met told me this was the nature of the disease. Every muscular dystrophy brochure used the word. Even when my neurologist said enthusiastically, “You’re doing great. You’re degenerating at the speed of a glacier,” there was always the understanding that loss of muscle would take place; it was just a matter of how much or how little. I always knew that to some degree my future body would be weaker than the present one.
For most of my life I have hated my body. It has let me down, taken away my ability to play tennis, go for long walks in the woods, carry a heavy bag of groceries. My body is disappearing on me – so slowly and subtly that I have been lulled into trusting its veneer of strength. I sometimes forget it is filled with invaders ready to attack whenever they see a moment of weakness, whenever they carry out a battle plan I don’t understand.
Lately, though, something has shifted. I don’t despise my body. I no longer curse its awkward gait or look with disgust at my thin right arm. I don’t apologize for a physique that is less physically beautiful than it would have been without muscular dystrophy. Instead, I hate the disease. I hate the misguided group of cells or genetic imprint or chromosomal mishap that beats down my body. I hate that it lives with me. I tell it to leave.
I look at my thigh now and speak to it as if it were a child: “Oh, sweetie, I’m so sorry this is happening to you.” I pour vanilla-scented massage oil into my palms and tenderly touch the sunken places of my body, sending them all my warmth. I pet my thigh with the same soft gesture I use on Lucy, the fluffy black cat I adore. I gather all the memories of love I have stored inside – the way I ooze with affection when I spend time with my nieces, the way I feel looking into the eyes of a lover – and I pour them onto myself.
A few years ago, I had abdominal surgery. I prepared for it by listening to a meditation CD. A kind woman’s voice led me through a series of relaxation techniques. I was guided through every part of my body, slowly softening the places from my head to my fingertips and toes. I imagined myself in my ideal place of relaxation – sometimes staring at the ocean, sometimes lying on a hammock looking up at a sky full of autumn leaves. I visualized my healing taking place.
This was easy to do when I prepared for surgery. I imagined my sweet, skilled surgeon smiling down at me as I lay asleep on the operating table. I imagined all the people praying for me to recover. I said goodbye to my ovary that was to be removed and I thanked it for all it had done for me. I imagined waking up easily from my anesthesia, feeling no pain.
I listened to this CD three times a day right up to the moment I was wheeled into surgery. And, as I had seen in my mind’s eye, everything went perfectly.
As I recovered at home, I watched in awe as my body began to heal. I had only associated my body with degeneration, but here it was mending. Initially, I was unable to lie down in bed or sit very long in a chair because of the pain. My stomach was bloated. My incisions were tender and pink. I needed two canes to walk across the room. But every morning I awoke amazed at how much better I felt than the previous day.
I continued to envision changes taking place in my body. I saw all my beautiful, wise cells going in to repair the damage like a parade of white-uniformed nurses caring for a patient. I felt each breath bring in fresh air, circulation, and comfort. And then I imagined the next stage of my health: me full of energy sitting in a restaurant with my friends laughing and sharing food.
After a couple of months I was back to “normal.” I walked with my usual limp but without the canes. I could sleep in bed without wincing, and my stitches disappeared. But I keep playing that visualization CD.
Now, I imagine regeneration because I’ve seen it can be done. Instead of surgery scenarios, I lie down in the afternoon, close my eyes, and watch as all my muscles get larger and stronger. They intertwine like fingers until they are thick and solid. I envision a large, metal strainer going down my body removing all the specks of dirty, black disease. Then, I picture myself walking easily on a path by the ocean. I am talking with a friend and not even paying attention to each step I take. Sometimes I turn around and walk backwards as we chat, or I skip like I did as a kid. It is so easy, so effortless I feel it in my roots, down to my core. And as the meditation ends, I wake up happy and rejuvenated.
I know my body has the ability to heal itself. I know my disease can be cured. I know this as surely as I know my body is deteriorating and there is nothing I can do. Somehow I hold the paradox, knowing that both of these things are true. I never say my hopeful words out loud because everyone knows that muscular dystrophy is degenerative. And yet, when I close my eyes, there is a place just as real where I am as fluid as I want to be. There is a place where I am whole.