Well, I am back dear readers…well, sort of. My children have been taking turns in being home sick and between that and a few family administration sagas, my limited energy has prevented me from returning to this place as regularly as I would wish. One of the most frustrating things about ME/CFS is the limitations it imposes on everyday life. Despite being so much better that I was, I still don’t have enough energy to do everything I would wish to and have to prioritise constantly: a trip to the doctor’s OR the grocery shopping, sorting out insurance OR writing a blog post, being functional for the kids OR formal paid work. I don’t want to choose, I don’t want to pace myself, I want to do everything. I want to run, I want to dance, I want to scream my head off.
I listened recently to Kate Davies TED talk about her forthcoming book Handywoman (2018) which describes building a creative life after stroke. She talked about having been a fast paced Hare in academia before her stroke and finding herself transformed into a slow, considered Tortoise post-stroke. She spoke about how she now valued the perspective and opportunities which had arisen from her Tortoise position. She sounded so wise and content. She made being a Tortoise look rewarding and nourishing.
Without comparing my experience to someone recovering from stroke, her metaphor of the Hare and the Tortoise resonated with my own experience of illness.
In the months before I got sick, I could sort out breakfasts, lunches and the school run, do classroom reading and ride 40 minutes to university to give a paper, ride home again euphoric, pick up the kids, do the swimming run, cook a meal and sort out bed time, then have a quiet wind down with knitting and partner before going to sleep. There were no physical consequences for such a day and I had a clear pathway to rewarding, stimulating work.
In the first six months of illness, the most I could manage was getting the kids sorted for school, well sort of. My partner would make their lunches the night before and I just had to assemble them and the kids got their own breakfast as I struggled to understand how to turn the grill on or what came next after pouring the cereal. I had to stay so calm in order to concentrate through all the noise. After another mother walked them to school, I would need to rest, exhausted from the mental and physical efforts of the morning.
My personality still clings to being the Hare but my brain and body sit firmly inside the Tortoise. Now, there is more mental and physical energy to draw upon, but it is a world of limits and choices and growing frustration. A little voice inside still says, ‘But I don’t want to be the Tortoise. I didn’t choose this’. Sometimes, the sense of claustrophobia overwhelms me.
But then I remember what it was like when I was really sick, or someone kind reminds me gently what it used to be like. And I never need to look far, to be utterly humbled by someone’s else’s courageous journey with ME/CFS under much more harrowing circumstances than I have ever had to contend with. Then, I can feel more at peace with where I am right now. I can feel thankful for my growing capacity, my ability to be so much more part of our family life. I can be creative in finding flexible, paid work opportunities. I can sometimes even glimpse the power and value which lie in the Way of Tortoise.
But I’d still rather be the Hare.
P.S. This is not the post, I set out to write today but somehow it wrote itself. I hope it resonates with other readers who struggle with chronic illness. May we all dance wildly with the Hares some day.