A scrawl of half finished letters lies on my page. I can feel the cramp at the base of my thumb, the tightness in my wrist. My fingers ache. Does that mean ten minutes are up? I can’t remember when I started. I’m having trouble with this timed session. Everything I write is silly. The editor yacks away at the back of my mind. I gag her, tie the cloth so tight her lips hurt. There is a tiny split at the corner of her mouth. The salt from her tears trickles into it and stings. I blindfold her, tie her to a hard chair, posture perfect.
I am sitting on an old highway northeast of Rosetown. There are huge holes where the asphalt has broken away. Weeds grow in the cracks, meandering from shoulder to centre like sun-warmed snakes. I chose the old highway over the new, to prove I am free, to give myself openness. I am different, looser, an explorer of life. I will be adventurous with my choice of verbs, let another thought take precedence when a word won’t come, leap on it, abandoning the forgotten. I don’t write this for my peers, but for the universe.
The editor rips off her gag, harangues me. “Don’t add anything irrelevant,” she warns. Her voice slithers into my mind like the snake in Eden. I tighten. Suddenly, the idea of writing has all sorts of limits, conditions and results.
The yellow mustard stain on my thumb catches my attention. Another dots my sweater, two woven threads wide. They remind me I have been messy, made a mistake. They bother me. So does the wind. It becomes stronger, more insistent, as noisome as a whiney child. I try to ignore it, but find I’m clutching my pen so tight I’ve strangled the flow of the ink.
My assigned writing time drags. The sun breaks through, “cocky” it jeers, “thinking you were done, trying to organize content. You want a tidy ending for your piece.” NO. I want what flows off the top of my mind. I want what spills from my gut and bleeds from my heart. I keep failing, yet, it is exhilarating to know I am moving forward. “If you’re not falling down, you’re not challenging yourselves.” I say to my kids. I’m writing. I’m falling down. I’m growing. Shine with jubilation, sun. Bless me with your approbation of warmth. I see the light!
When I look back over five decades of life, I discover that my greatest treasure trove of learning comes from the experience of having Crohn’s disease. An old adage often voiced states, “What doesn’t kill you makes you stronger.” I believe this; and also that it makes you wiser.
The first lesson I learned from Crohns was how to deal with pain. This lesson had to bang me on the head for many years before I ‘got it’. In accepting pain as a given in my life, I was able to lessen its importance, and thus reduce its impact.
Coping with the disease brought me a new depth of feeling. When my husband pushed me down the hospital corridor in a wheelchair because I was too weak to walk, we passed a diabetic woman who had no legs. I was attached to so many machines, tubes and drains that movement was out of the question, yet, in the next room the nurses unhooked machines from a patient who couldn’t be saved. Crohns put me in the hospital, where I learned compassion and gratitude.
I was 29 when I was diagnosed, and ran my life like a balance sheet for giving and receiving. It was okay to invest more than I received, but I must never run a deficit. My lengthy illness made caring for my family or myself impossible at times. It forced me to become a ‘taker’ on a large scale. This caused me considerable stress until I understood that in accepting someone else’s gift I gave them back a gift. I provided the opportunity for them to be generous, kind, reach beyond their own problems and feel good. I learned that instead of saying, “you didn’t have to” or “It wasn’t necessary” that I could ennoble their gift. That I could wrap my appreciation up in the bow of sincere words like, “The energy you saved me by bringing dinner allowed me to play with my children for an hour. Thank you.”
I learned early that if I couldn’t walk in someone’s moccasins I could at least try them on. I gained a new respect for all hospital employees. In the long waits for test, I learned patience. In coping with the mistakes of doctors and nurses I learned tolerance. And I came to see that I didn’t improve a situation by being negative, complaining or whining. Crohn’s forced me to grow up.
I witnessed the true meaning of keeping a marriage vow, as my husband followed me into hell. Though he often teased my mother with, “if I knew she was in this bad of shape I’d have bought a warranty,” my husband suffered terribly, as men do, who feel helpless. Yet, he stayed through sickness as well as health.
Crohns also introduced me to a few new philosophies and strengthened some beliefs I already held. I received the proverbial second chance at life and learned each moment is precious – not to be sullied or wasted. I learned that out of every difficult situation comes good and that we recognize the good at some point during or following our travail. Just as the difficulty spreads wide to encompass many people, so does the good – often it is great good with immeasurable results. The changes in our life molded our children into strong, independent, adults.
I learned that “man really is an island”. Granted I could reach across the water that surrounded me to ask for help and often even hold the hand extended, but in the end, when it came to life and death decisions, I made them alone. I said, “Yes I’ll have the surgery” or “No I won’t allow you to give me that treatment”. Only one hand can throw the dice of life and death.
Experiencing Crohn’s disease taught me a great deal about the disease and coping with illness of any kind. It motivated me to interview many people living with invisible diseases, and to write a book about the commonalities of their experiences.* These people handed me many practical tools for living ‘well’ with chronic disease.
I proved to myself over years of hospitalization and experimenting with wellness that humans are potentially self-healing by design. So it is up to me to create the balance of mind, body, spirit that allows me to heal. With these beliefs as an intellectual springboard, I created the lifestyle that best allows me to honor them. We built our home by the river. I do the work I love. I actively seek the solitude and quiet that I know will keep me in balance.
Crohn’s disease appeared like a terrorist, inducing fear. In fighting the fear with love, I grew and flourished – body, mind and spirit. I broke free of its cruel death grip with a will to survive that amazes me to this day. Occasionally, my illness attacks again and I struggle to defeat it. But I do so now with deliberation rather than rage; because I am certain this fierce combatant still has more to teach me.
*The book, Chronic Challenge, will be published by chapters in this blog later this year.