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Jan 8, 2014, 16:36 PM
If you are living with a chronic illness, aspects of my story are your story, too.  

This body is a couple of batteries short of being the life of the party. People don't realize. I'm a master illusionist on stage and off. Decades with Fibromyalgia depleted one battery; crashing with Myalgic Encephalomyelitis (aka Chronic Fatigue Syndrome) seven years ago drained the other. I was "in the closet". (Still am). Who would want to hire a liability? Fibro, I could push through. I wanted to be known for what I could do, not for what it cost. Illness was a shame, a dirty secret. I didn't have energy to battle stigma and misconceptions. Then CFS knocked me out.  It was quite the lifestyle change from traveling the world with my husband as headline entertainers.  For several months, I couldn't lift a spoon, nor sleep, or get out of bed. Lying in a dark room 24/7 felt like being buried alive. It’s a miracle how I kept the illness and the slow, arduous recovery from my parents. There was no one else but us to help them through numerous medical emergencies. It took a few years full of set-backs to crawl up to a half-life.   FM and CFS are incurable. Only my husband understood as he nursed me, and his life was blighted, too. Friends that I supported in the past vanished when I needed help.  How much do I dare lean on the others?  

In her book Hope and Help for Chronic Fatigue Syndrome and Fibromyalgia, Dr. Alison Bested advises that when we have recovered enough (6 out of 10 on the Functional Capacity Scale), we need to grieve the loss of our health. Grieving takes courage and energy. In our culture, sadness is often pushed under or glossed over. It makes others uncomfortable, so they try to be helpful and usher us to “get over it”.   Yet loss and the natural emotional reaction is a shared human experience. We can’t be whole, if we cut our limbs off. In the seminal book On Death and Dying, Elisabeth Kubler-Ross outlined five stages of grief, and noted that they are the same, regardless of what kind of loss we've experienced. We cycle through anger, denial, bargaining, and depression before coming to acceptance.
I was at a low point in the winter of 2012-13. Living a Healthy Life with Chronic Conditions was coming to a close-by location. Would I have the stamina to be out for 2 1/2 hours? First week, as we shared stories about how illness affected us, I struggled to hold back tears. I've never been in a room with so many courageous people full of grace. How did we become such half-abandoned children of a lesser god?     

There are gaps in the medical and social system with shortages of doctors, funding and services. Often, we are called upon to support others, though we are ill. The course serves a double function: by helping us take charge of our lives and implement action plans for improvement, we support ourselves and become empowered, while easing the load during this transitional phase, as the government becomes more aware of our needs, and works towards making the necessary changes.  

As other people’s action plan changed from week to week, mine remained the same: work on my first art project every spare moment, to finish it by the extended deadline for a magazine that connects a spiritual journey with art, expressing truth and joy. Many obstacles surfaced. During a brainstorming session, I couldn't accept that sometimes there is no solution. It was a necessary priority to help ill parents; to help husband in our business as we’re self employed, feeling the crunch with my limited capacity; and to help my friend who was losing his wife to cancer. There was no energy left, yet I could not give up the dream of sharing this art that was bursting out without any prior training, when words failed me as a poet.  I felt the message was important. When the textile work was finished, the poem came as illustration.
Winter’s Grief
aborted potential
their future hopes

unchain spirit
let winter’s grief

The magazine didn’t publish the picture. Perhaps it was too “dark”. In real life, truth doesn't always coincide with joy. The point of the piece was that only after going through a “winter of our soul” grieving what we loved and lost, can we arrive at acceptance, which leads the way to transformation. From “death” new life can come, if we accept that it will take a different form. And then, we are open for joy.
The textile work won second prize in the Emerging Artists' Showcase at the South Simcoe Arts Council. Another poem won third prize in a Canada wide competition held by The Ontario Poetry Society. They subsequently selected my work to be featured with four other poets' in the upcoming anthology, Encompass III. More art-work came and was accepted into juried exhibitions. 8 shows inside of 6 months, including two at Orillia’s Museum of Art and History, and at Quest Gallery in Midland, where my collage was sold before the show opened. A new career is launched.

I hope you can come out to the galleries near you and get a burst of joy and energy from the vibrant artists of Simcoe County. 

Thanks to the Peer Leaders who help keep this program going. Thanks to my wonderful husband for his magical love. And a medal for courage is due to people living with chronic conditions, and those who support them.    
North Simcoe Muscoka Self Managment Programs    South Georgian Bay Community Health Centre 
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