There’s a Hare in my Tortoise

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.

 

19. June 2018 by Rebecca
Categories: look | Tags: , , , | 25 comments

Comments (25)

  1. Rebecca, Dear, I too listened to Kate Davies’ at the TED symposium.
    Having followed her for several years, I am always in awe of her struggles and perseverance. After reading about all your struggles I can definitely see that the two of you have traveled down somewhat similar paths. I can only wish for you, and her, continued perseverance and success in bringing you back to the Hares I know you are. (However, I love the way she says the word “tortoise”!!)

    • Thanks Elaine, Kate Davies is quite remarkable, she brings such intellect and curiousity to everything she touches, even illness.

  2. Dear Rebecca, As must be obvious, I’m a fellow hare in my heart and have hated the times I’ve had no option but to tortoise. I supported my daughter through years of CFS/ME and the constant choices sound so familiar. I am in awe of your process of coming to terms with your now-expanding energy levels. I started following Kate Davies not long after she had her stroke and felt in awe of her (and still do). I salute all the spoonies in my life. I think everyone knows in their heart that they prefer to make choices than to have things thrust on them. But some of us know it in the very fibre of our being, and some do not (yet) have this experience. Sending hugs (but you know, only if you’d welcome them).

    • Dear Mary, Oh yes, I welcome all hugs, but especially ones from you. I hope your daughter is enjoying a fullsome spacious life again. Cheers from the land of tortoise.

  3. You and Kate are my heroes. Because you dare to speak of ‘it’ in a positive manner and somehow rearrange your selves/brains to make things work for you. Bravo!

    • Well! Now you make me blush. To be called heroic and share the same sentence with Kate Davies. You are very kind to me.

  4. Such a timely post. I am so sorry to read of your daily struggle and frustration. Much of what you have written resonates with me and the enforced changes that had to be made when my daughter was diagnosed with ME/CFS at the age of 15. She is now 22 and like you, has had to learn to live as a tortoise when she yearned to be a hare. Learning to pace oneself and take heart in what you have achieved rather than be angry/sad at what you are unable to do must be a hard thing to do. I can empathise with you as I have recently been diagnosed with Fibromyalgia, and whilst I am not comparing my few limitations with your illness, I am finding it extremely hard to slow down and listen to my body. Take care of yourself and I hope you continue to see improvements. We all know that the tortoise wins out at the end. Sending best wishes.

    • Dear Deborah, I am sincerely sorry to hear about both your daughter’s diagnosis and now yours. Fibro has very similar symptoms to ME and I am sad that you are have to slow your very great creative productivity. I hope your crochet continues to be a good friend to you through this next part of your life. Do you know, I had quite forgotten the tortoise wins in my envy of the hare. Thank you for the lovely reminder. Best wishes to you.

  5. Of course I will not, cannot compare myself to anyone who is/has/had a chronic illness. I am lucky/blessed. And I don’t want to trivialise what you have gone through But I am 60 years old and not the woman I was. When faculties fail and we have to accept limitations we feel very like you (and Kate) have described. Whatever the cause. Once upon a time I had a full time job, 4 children an au pair (which in many respects was another management job rather than a help) and a husband who worked away sometimes for 6 months at a time while studying for my degree with the open university AND learning to drive (it took three goes to pass my test). I also made bobbin lace and met once a week with other lace makers.. and still managed to broaden my childrens minds by museum visits on a weekend. My point being.. the hare does not stay with any of us for long. The hare is unsustainable. The tortoise is the natural order. It is sad to feel like the hare was taken away from you too soon but this is how it is. The time of the hare would never be long enough even if it lasted twice as long. Embrace the tortoise and live in the moment, the hare’s life is short, the tortoise lives a long long time and savours every amazing, creative, wonderful second.

    • Dear Jane, I must thank you very much for your comment. After posting, I had begun to start reflecting upon the similarities with aging but you have described things so eloquently. “The hare is unsustainable. The tortoise is the natural order”. How wise, how salutary. The tortoise comes to everyone in time.

  6. I can really recommend the Gupta programme for ME/CFS. It really helped me (I had a related condition for about ten years, and am now about 70% better).

    • Thanks Penny, I am so glad to hear that your experience with the Gupta programme has been so beneficial. Much of my current wellness strategy is based on the research he draws upon.

  7. I believe that some truly wild dancing with the hares will happen and maybe the tortoises will be forming a protective circle around the dancers as they leap and prance in joyful play.

  8. As soon as I saw the title for today’s blog I figured you were referencing Kate Davies’ talk. I watched the TED talk and I also had the pleasure of listening to her longer talk at EYF. I can’t wait until Handywoman comes out!

    The difference between what we want to do and what we are able to do seems to be one of the defining tensions of mortal life. I cannot imagine the huge and long term effects of a stroke or a chronic illness like ME. I do know the frustration of debilitating migraines and recurring joint pain or any number of other bodily or circumstantial or monetary reasons I haven’t been able to do what I wanted to do. The very body that limits is also the only body one has in order to experience the world and make anything. It both enables and disables at the same time to varying degrees. I think about it a lot.

    Like you, the way that Kate talks and writes about the creative possibilities within limitation and difficulty are so inspiring. Our very limitations will be part of the vast tapestry that we make of our lives and who can know what those limits will be from day to day? I can only stand in awe of what people manage to make and do with what they have when they can. Aren’t humans so interesting? (and you are amazing!)

    • Dear Becca, thank you so much for your comment. Yes, you are right, there are so many ways/forms/conditions that place limitations on our body and it’s so easy to get stuck imagining everyone else is so able when really human bodies are fallible but it is our vehicle for experiencing the world in a very unique way. These are subtle and poignant observations.

  9. Hi Rebecca,
    My meditation teacher’s fundamental lesson is the power of radical acceptance – meaning totally, without resistance, accepting whatever is in the current moment. Not folding to it or succumbing, but first acknowledging the reality of the now. Without that, any plans we make come from a point of resistance to, or battling with, or denying our current truth. I am fully healthy and employed, well housed and happy, but my son is waging his own mid-teen battles that break my heart. He is not the child I thought he would be. He struggles with issues that never even entered my imagination when he was little. Learning to accept him and his world, is my current challenge. I hope you feel deeply, that you are inspiring, and that your blog posts, dyeing, knitting and creative life brings pleasure to so many of us.

    • Dear Frith, radical acceptance…such a challenging concept and yet, really, the only way to move forward. Thank you for sharing this and your own struggle with a reality that is so different from what you expected. I feel so fortunate and humbled by the generousity of readers like yourself, your honesty and your encouragement…thank you.

  10. Thank you for sharing your journey with CFS. I was feeling a bit deflated last night about my lack of energy and motivation in winter but now I am just grateful for the energy I have. Hugs x H

    • Thanks Heather, we all get a little low in winter I think, the season of introspection. This is not the life I chose and sometimes I inhabit it so self consciously, worrying about the judgement of others but self judgement is always the actual enemy. Let us all be a little kinder to ourselves.

  11. I hear your frustration Rebecca, you are strong and very brave and I am amazed at the things you are able to do. Look forward to a run with kids & dogs tonight. Much love XX

    • Thanks Nicola, so glad we’ve got passed the point of me being embarrassed to use my walking stick on our walks. Things should be more straight forward now!

  12. I am glad you wrote this post – these things need to be said. There have been too many years when CFS/ME have been disparaged and mocked with mutterings. Which is an added pain for those struggling. It seems to me amazing that you already do so much more than you were able to do when really ill. So perhaps you need to take yourself out of that particular metaphor. If it were me, I might long to grow to be more cat-like, accepting the long sleepy periods, but with very sparky inquisitive and very active times. Not your animal, I guess …

    • Dear kaydeerouge, I think you must be a genius! I think you are entirely right, I have been getting stuck in a dichotomy. Another metaphoric animal is just what the doctor ordered…not a cat, you are right, not my animal…but perhaps a dog. I am a Chinese zodiac dog and I could find much in their joyful pleasure in the outdoors, arrival of visitors and dinner time and also their quiet withdrawal to a cosy place of rest until something interesting happens. Thank you so very much for your wise contribution.

  13. You are a natural hare, Rebecca. In the early days of reading this blog, I always marvelled at how you juggled life. True, learning the tortoise nature has been a forced march for you, but here you are with a fine bit of introspection. Your tortoise may be a friend to your hare. It’s wonderful to see the two together in this post.

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