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April 15, 2011
A real pain in the neck
Living with chronic illness is truly a full-time job.
ELLEN FRANK
We hear a lot these days about work-life balance, the challenge of juggling paid work, home life, recreation and rest. Well, when you have a chronic illness, all the juggling balls tumble to the ground and balance becomes impossible. I’ve written before that the trouble with chronic illness is that it doesn’t go away. Well, let me add to that another trouble: dealing with chronic illness is so time consuming that it’s really a full-time job.
In the beginning, my multiple sclerosis wasn’t a job but, 23 years later, it’s become one. I was talking to a disability buddy of mine living with Parkinson’s and she says that chronic illness is 24/7. She is right, of course, but I am happier with the full-time job analogy. Chronic illness is like a full-time job where you’re on call – a lot. Maybe it’s like being a solo practice maternity-care provider, where you are perpetually on duty and you know that your patients will all eventually go into labor but you don’t know when or how long the process will take. Thankfully, this analogy gives me the illusion that I am sometimes off duty, as well.
A question familiar to most of us is, Where has the day gone? This has been one of the main questions that has followed me all of my adult life.
How to explain this full-time job? If I said I was a midwife, people might have some idea of what my life is like. In my old travel agent days, people would nod when I asked that question, as if my work was the explanation for the quick passage of time. Today, I lack an answer to the ubiquitous, What do you do?; an answer that could provide a clearer picture of my life and its contents. It’s similar to the problem many of my friends had after they retired. They think that they should now, finally, have time to do all the things they never had the time to do, but they are busier than ever! Where does the day go?
One reason that living with MS, or with any chronic illness, is a full-time job is because everything takes so long. To top it off, I start out with fewer hours due to my distinct lack of energy. Then there are the endless medical appointments and the organizing and supervising of the people who are there to provide help. Meanwhile, the tasks of daily living take so much time – putting laundry in the washer … in the dryer … folding ... that’s a day’s work right there. Add emptying the dishwasher, and it’s a long day’s work. Never mind that making the bed is an Olympic event. I spend time trying to sort out which part of this conundrum is just life and which is the MS. Where once yoga, massage and exercise were things I did to keep in shape so I could do the things that I loved, like hike and ski and hang out with family and friends, now I do them just to survive and not fall over while transferring myself from my wheelchair in the washroom.
With all this, it is hard not to feel broken. Some days, I feel like a broken car held together with tape and bubble gum. Other days, I retreat into my head and disown my body – but that doesn’t tend to work out very well. I am more than my body.
Then I try to remember lessons from my Judaism – I manage to remember my neshamah, my soul. It’s not broken. Maybe one of the ways of paying attention to my spirit is to redefine what a workday is.
Years ago, when my MS was almost a full-time job, I decided that, in order to get any writing done, I needed to reframe my workday; I decided that a full day of work equaled three hours. I got very excited about this three-hours-equals-full-day thing, and when I just did one and a half hours, I’d worked half a day. Like any job, the trick is to organize the day as best you can and delegate whatever you can.
Now that years have gone by, I need to reframe again. With MS as my full-time job, writing and other projects have become my second, part-time jobs, and those jobs can takeabout two hours a day. However, in the morning, I give myself a chance to sit for a half hour or hour drinking coffee and writing in my journal. This is part of my life – not part of my work.
Perhaps it’s time that I try to harass myself less about where the day has gone. Maybe I should try to think of myself more as a midwife. Just imagine if I cared for my MS with the same patience and compassion that I would care for a woman giving birth and the newborn baby that emerges.
Ellen Frank is a writer, activist, mother, grandmother and retired travel agent. She has lived with multiple sclerosis since 1988. She is the author of Sticks and Wheels: A Guide to Accessible Travel on the Lower Sunshine Coast (Ouzel Publishing, 2006) and features information on accessibility services on her website, sticksandwheels.net.
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