Introducing The Chronic Challenge: Living Well With a Chronic Disease

My intention in the weeks ahead, is to present to you my book on chronic disease, Chronic Challenge: Living Well With A Chronic Disease, chapter by chapter. In order to write this comprehensive book on coping with what are termed the “invisible diseases”, I interviewed men and women across Canada suffering with chronic conditions. I covered Crohns Disease, Fibromyalgia, Lupus, Diabetes, heart condition, SAD, and Multiple Sclerosis. Most often, particularly in the early stages of their illness, it is not obvious they are sick. Yet, each day they fight through a variety of symptoms to go to work, raise their children and live as normally as possible. The people around them are not aware of their suffering, and often make harsh judgements, labelling them malingerers, lazy, poor time managers, irresponsible.

If you are one of those living with a chronic disease, you know the cost of keeping it to yourself and being labelled, and the effect of sharing your condition in hopes of a fairer approach from family members, care workers and the public. You probably feel you can’t win either way. And you still have the disease to cope with.

The wonderful people I interviewed had all lived with their condition for over fifteen years. They were undergoing remissions and relapses, living fully or fighting another bout. All of them had much to offer in the way of physical, mental and spiritual coping mechanisms. Their stories are uplifting and helpful. Whatever the disease, they had much in common. And whether you are diagnosed with a disease, or trying to understand it for someone you care about, their comments, advice, philosophies and strength will help you. I hope you will follow my entries over this next three months and find in these chapters a figurative hand out-held and waiting to offer support.

One cannot look at the patient, without looking at the people around the person with the disease. They too have much to cope with, whether family, friends or co-workers the disease causes change in their lives. In Chronic Ripple I offer up the comments and conclusions of these people whose lives are also affected by chronic disease. I hope you will gain comfort and good advice from my interviews with them.

Lessons Learned From Crohn’s Disease

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.

 

Less Is More

A few years ago, women who had embraced Simple Abundance raced to buy Sarah Ban Breathnach’s Something More. I hit the bookstore with the same toothy smile of anticipation as the twenty women in line ahead of me. As I worked my way through the book, I waited in vain for my body to pebble with the gooseflesh that announces one of my epiphanies. Breathnach’s premise that I excavate my past like a highly organized archeologist lacked appeal. I figured I’d uncover a noxious landfill with no value other than excessive gas. I have learned that being my best self does not require digging more up, but tossing more into the landfill instead.

Over the years, I have been steadily letting go. At age 25 I finally let go of the need to be manipulated by my mother, by taking a shaky stand over the phone.  When I hung up freedom felt like nausea. Guilt was the first garbage I threw out … or up. Over the next ten years the garbage containers in the house filled with my throw-a-ways. I tossed the need to say “yes” to everyone and everything, the hunger to be liked by all; my need to take responsibility for everyone plus their dog and their cat.  I gave up the idea that what I did had to be perfect; the idea that what I did mattered to anyone but me.  A pile grew in the back yard as I emptied this trash from my life. My streamlined persona became noticeable and others tagged me with labels like rebel, introvert, anti social and made noises that indicated I was bucking the system.

I hid from their disapproval in Crohn’s Disease for a half a decade.  In the process I let go of most of my intestines, all of my modesty, my idea that I always had to give more than I took. I dumped any thought that I was indispensable – the kids still grew up and the cats found another lap to lie on.

I eliminated the compulsion to host trés eleganté dinner parties that left me standing on swollen feet washing delicate china till 2:00 a.m. When my children begged me to make Christmas simpler so they could enjoy it, I threw out the social paradigm that it had to start in October and end with a bout of stress induced flu in January. From 30 to 40 years old I discarded so many of society’s upside down beliefs, I became a junk collector’s dream.

As forty slammed into fifty my refuse pile became a neighborhood eyesore.  It was time to move. I heaped on the bustle of city life, the constant round of people, places, interruptions and noise. I eliminated a big house, abandoned, with relief, ornaments and furniture that sat for six years in storage. I gave away my obsession with time, and let go of expectations of people and myself, and refused to take ownership of their expectations of me. The crash of my short-term memory helped me to minimize multi tasking. Burnout forced me to walk away from duty to the church, begrudging contribution to the community and empty my life of people who had moved on while I insisted on hanging on. I left city life and returned to my roots, where I found the confidence to be still, to sit in silence, to quiet my mind.

A year later I eliminated a second home, the long drive between two provinces and the numb bottom that came with it. I’m one woman in one house with loads of time I won’t give away. But I will lend it – to meditation, quiet walks, writing and domesticity, a good talk with friends, a helping hand to family.

The bulldozer came and lifted the junk out of my virtual backyard into a garbage truck that trundled it away.  I hope there is no one at the dump picking through the accumulation of misguided thinking I discarded, in hopes of taking something home. I lived too many years among the toxic waste of what society said was right or wrong. I am free, having tossed the belief that there is a right and wrong and replaced it with the knowledge that there are just different ways of doing and being. I am who I want to be not by digging down into the bones of my past but by paring my life down to the bone.