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MANAGE YOUR SUBSCRIPTIONThe Unhealed Life
Yaël Bethiem lives in Eureka Springs, Arkansas. Though bedridden, she teaches Re-Evaluation Counseling and leads support groups for survivors of child abuse.
Sunlight slanting through my window touches the leaves of my plants. The light is luminous and magical, filling the room with warmth and promise. But notwithstanding the beauty of the moment, I am filled with longing — a longing to dance and run, to raise my arms in salutation to the sun, to wade breathlessly in ice-cold mountain streams, to feel the earth beneath me.
Instead I live in this one room. It is here I eat and sleep, here I teach, here I learn about love. It is here, from my bed, I reach out to the world; here I dream of a healthy body, the heavy, solid presence of strength. It is here I awaken each morning to a life very different from the one of my dreams.
My favorite cat slams against the door in an effort to rouse me to let him in. This is our ritual: he jumps onto the screen and careens like a wild man into the door, and I lie still and listen. The walk to the door looks very long. I lie quietly, waiting for the determination to rise. In the corner stands my walking stick, symbol of my "different" life. I am not sure if it is friend or foe.
I have a disabling disease. Ankylosing spondylitis (AS) is a genetic disease affecting the immune system, causing it to attack the body as if it were an intruder. My father had this disease before me. Like me, he was forced to grapple with a life of disability and intractable pain. Although focused in the spine, AS affects the body as a whole, causing inflammation, fusion of the joints and spine, and inflammatory bowel disease. For me this has meant stays in the hospital and high doses of steroids to stop the bleeding. It has also meant a life of restriction and pain.
Sitting has become very difficult. Each day, I can manage about three hours in a chair. Consequently, "up time" is of great value. It is cherished, planned for, and jealously guarded. If people call when I'm sitting up, I ask them to call back later. Sitting is too important to be interrupted.
Essentially bedridden for three years, I have invested a great deal of energy in teaching my body to move again. I have worked for a year to be able to stand outside for ten minutes at a time beneath the trees. I live in a town full of hills and old Victorian houses. Outside my door, on one of the few flat spots in town, I practice walking. Under a stately oak tree that has become my friend, I struggle with the limitations of this body. At times, when I cannot walk, I stand in silence. Never before, when my body was well and I rushed to and fro in the world, did I see the beauty of the sky in such bold relief. I didn't understand the whisper of wind against my cheek. Nor did I realize the nourishment I received from the world of nature — not until it was denied me.
When I go outside each day, my cats rush to meet me; they know this is a special event. My time with the sky has been dearly earned, a shimmering victory that disappears like a mirage when held up against the easy movement of someone else's life.
For ten years I have worked to heal myself. I have eaten the right foods. I have cleansed my body and fasted with vigor and conviction. I have gone to healers. I have had the laying-on-of-hands. I have visualized, relaxed, and prayed. I have gone to pain clinics. I have analyzed my childhood and worked with my dreams.
I am deeply engaged in my life, but I am not healed. My mobility remains impaired. The pain remains constant. All my imagery and prayer has not been able to change anything.
