(York in 1994. I lived in the wee house with the white door to the left of the picture.)

In the summer of 1994 I was living in York. I was twenty one; had finished my honours degree; and was looking forward to beginning my masters. I had a job in a pub that paid the bills, but, when one of my professors asked me if I would like to make some money from reading aloud to her uncle, I agreed. This chap had recently had a stroke and was living alone in Los Angeles without the security of a good insurance plan. My prof – who was a brisk, demanding, and can-do sort of person – had flown over to California and brought her uncle back to the UK. He was an aging actor who was by then in his 80s: very proper, very thespiae, and very camp indeed. My prof felt that literary conversation would improve his rehabilitation and that’s where I came in. Three times a week I cycled along the river bank to spend the afternoon with Richard. I read T.S Eliot’s Four Quartets aloud to him, and then, if he wasn’t dozing, we would talk about books. I recall that he was very fond of the early novels of Aldous Huxley, in particular Crome Yellow. Occasionally, I would cross paths with a pleasant OT who got him up into the kitchen, making tea and toast. Richard’s was a similar sort of stroke to mine, but by that point (a few months after the event) his leg had regained more function than his arm. He was able to move about unaided in a wobbly sort of fashion, but I recall that his arm didn’t do much. In fact, I remember feeling that, apart from the OT (which he actually seemed to resent) Richard really wasn’t doing much at all. Outside, there was a glorious English summer going on, and he was just cooped up indoors.


(It was a hot summer, and my friends and I would often go swimming in the river by Kirkham Priory. I am the one in the hat).

So one day I decided Richard and I should go outside to read. A short distance down the road from his flat were the lovely tree-lined banks of the river Ouse. He wasn’t keen, but I think I lured him out with tales of the New Walk, where York’s fashionable elite promenaded two hundred years ago. Once we were outside the front door, I realised that this was going to be more difficult than I thought. The distance to the river was only about 400 metres, but for Richard the going was very tricky. There were steps and kerbs to contend with, and he had to take my arm the whole way. We made it to the river bank, but he was clearly completely exhausted. I found a bench and Richard asked if he could borrow my cardigan. Using it as a pillow, he lay down on the bench and promptly fell asleep. I sat down next to him and pretended to read my book. To anyone observing the scene, it must have looked as if I were consorting with an elderly tramp. I felt completely out of my depth and knew I had done something very wrong. I was 21, full of beans, and a little frustrated that I was missing out on the good weather while I spent time reading to the old feller. I also, entirely naively, felt that he clearly needed a bit of a walk and would benefit from being outdoors. I had no idea, because he hadn’t told me then, what it was like being inside his skin: that a distance that to me was a mere hop, skip, and a jump away would to him be the equivalent of several miles; that while I possessed boundless energy, to him, the mere activity of rising from his chair to select a book from the shelf was completely exhausting. Richard was fast asleep on the bench next to me, and stayed that way for what seemed an interminable time, but was probably only twenty minutes. When he woke up, he was groggy, and wanted to go back. We accomplished the return journey in the same halting, tottering fashion. Later on, over a cup of tea, he told me that the fatigue he felt was completely overwhelming and like nothing he had felt before.


The New Walk (1756)

I now have some understanding of what Richard must have experienced that day on the New Walk. There is something quite insane about post-stroke fatigue. It is blow-to-the-head, room-spinning, muscle-shaking stuff. It consumes and it devastates. Sometimes I am so tired that I can’t even raise my “good” arm to reach for a cup of tea (the horror!). When I am exhausted (and this can happen very quickly) it becomes difficult to move, to get words out, or even to think in a straightforward, logical fashion. The emotional lability that I understand is common with stroke sufferers is much, much worse during such periods of fatigue. I am managing (I think) to tackle most of the challenges the stroke has posed in an affirming sort of a fashion, but when I get tired I become incredibly weepy and frustrated. (I also become very irritated by my over-emotional self, so clearly the fatigue doesn’t affect the intolerant part of my character). I read about those spoons (thanks, Sarah) and Christine Miserandino does a good job of conveying just how it feels having to take fatigue into account. If you are well or able-bodied (like my 21 year old self) it is perhaps difficult to see just how hard it is to apportion out one’s available energy every single day. My problem is that I am more likely to use the one spoon I have, like Robert Bresson’s Fontaine, to attempt to carve my way out of the prison cell.



(transforming a spoon into a chisel in Bresson’s Man Escaped)

As a consequence of this, as you might imagine, I have developed a profound appreciation for sleep. Tom has a good story about when, aged thirteen, he was asked by his art teacher to design a coat of arms depicting his favourite activities. In one of the quadrants, he drew a picture of himself in bed, blissfully asleep. This elicited an angry reaction from the teacher, who told him that he couldn’t include sleep on his coat of arms because it wasn’t an activity. Tom, however, felt that sleep was not a negation of action, but was rather something to be positively enjoyed in its own right. From my post-stroke perspective, I would definitely agree. In fact, I would like to include sleep on my own activity-related coat of arms, along with the consumption of good home cooking, regular physio, and tent stitch, to which I have recently become addicted. I sleep for a good nine or ten hours each night, and have to factor one or two naps into each day. The sleep I experience now is totally unlike sleep before. I would say, much like the adolescent Tom, that I actually, actively, enjoy it. Sleep is delicious, restorative and transforming. And, of course, it is when I’m sleeping that my brain has time to heal itself, so I have to make sure I get enough of it. Until now, I have found that I can cope with the crazy fatigue as long as I recognise that as soon as it comes on, I have to just give in and have a snooze. As yet, a bed has always been available in this eventuality, but what will I do when there is just a bench? Or, indeed, nothing? The first thing that coming home has taught me is that I have to plan ahead to conserve my energy. This is annoying, but entirely necessary if I want to do things independently, and to enjoy what I am doing. Anyway, today’s plan is to do nothing remotely physically demanding in the morning, as I intend to try to walk a couple of miles this afternoon. Hopefully there won’t be any lying down on benches and I can show you a pic or two later on . . . after I’ve had a nap. . .

42 thoughts on “sleep is an activity

  1. Dear Kate

    I only started reading your blog just before you had the stroke, so I’m not an ‘experienced’ reader of yours! I can imagine that your blog-writing is quite cathartic for you at the moment, but it’s also an incredibly inspiring read!

    Keep on sleeping, Kate; you’ve had a lousy injury and your body needs to shut down and help itself to recover. I only realised that one’s body ?naturally/automatically did this very thing when I had a hysterectomy aged 43; I’d never slept like that before, and I haven’t since.

    Good luck! X

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  2. when i shared a room with my elder sister Betsy–I was a young teenager and she was in her early 20s and working on a horse farm–I remember the satisfaction with which she used to say, “Ahhh, the best part of the day” as she settled down in bed to sleep. Sleep is most definitely an activity and one of my favorites.

    Kirsty I really like your Art of Illness essay.

    It can be so frustrating to feel fatigued and need to rest so much but of course patience with oneself is key.

    I haven’t seen Man Escaped, but Paul and I watched O Lucky Man recently based on your recommendation. I am afraid the scene from the medical institute has been haunting me ever since! Sorry if I shouldn’t have put THAT one back into your mind. Loved the film, though.

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  3. Thanks for sharing the Spoon theory with everyone, that completely resonates with my experience. Luckily for me, knitting doesn’t use up my spoons, unless I’m very very tired. Hope you feel less tired soon, as your body regains strength and mobility.

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  4. Hello, I happened upon your website for the knitting. Now I come back to follow your recovery to find encouragement. I was so pleased to see you mention “Spoon Theory” My oldest daughter showed me the story about 1 1/2 years ago, she found it because she has MS and it was linked to another site. It explains so much to those of us who can’t seem to grasp your/her difficulties. Today your discussion brought home so much more as my son has recently been battling Narcolepsy, it is debilitating for him, he has it so severely, for him sleep is a nearly constant activity. Unfortunately sleep is not resorative for him. As the mom to these two wonderful people it is my joy to be supportive and empathetic, but mostly to keep their spirits up. I want to thank you for your eloquent, revealing essays and wish you continued success, and I hope you don’t mind that I add you in my prayers. I love your knitting also. This past Christmas my son had given me a set of earrings that he found at a thrift store. They are two different animals. The tortoise and the hare. So, do you see why I keep coming back to your website? I would love to make something to go with the earrings. He would think I’m nuts. But, at least it would make him laugh. Thank you again. Lisa

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  5. Another very beautiful post, and one that resonates with my experience after a major accident. I think that one of the few things I would criticise modern health care for is the loss of the idea that we need to pace ourselves when recovering from a major illness or other somatic event. The fatigue is not surprising when you consider what your brain and body are doing in the way of healing, re-building connections etc, and sleep is an active part of that.

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  6. I can’t tell you how much I look forward to reading your posts as well as the comments from fellow readers. My parents are both very immobile, from a combination of the natural erosion of their bodies and the damaging habits they developed over the years. It is very hard for me to remember what an effort the simplest thing can be for them, especially walking. The descriptions and specific details you’ve includef in sharing your story have helped remind me to practice some very difficult exercises for myself when I’m with my parents: compassion and patience. Thank you.

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  7. Ages ago after major surgery, I was young(26), resented the fatigue and would try to ignore it. Then would end up on a bench two blocks from home in frustrated tears because the ice cream store was closed! I had long since forgotten that feeling of overwhelming exhaustion. You do an amazing job of making the effort of rehabilitation clear…and reminded me of the need for patience with those who need it so. Thank-you.

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  8. Wow, I can assure that teacher that sleep is most definitely an activity – as every insomniac knows!

    I know how frustrating this sort of deep, bone-wrenching fatigue is, Kate. It does suck. Some days just showering and getting dressed is a HUGE achievement. And then you feel a bit pitiful and useless because it’s only showering and getting dressed, for heavens sake! But when you’re recovering from being very ill, your body is incredibly busy on a cellular level. And that takes energy. In the case of brains, a LOT of energy because our brains take a disproportionate share of our body’s resources. They’re expensive things to run.

    What sometimes works for me is to tell myself that it’s just temporary and that I will have better days. I do still get very cross though.

    I’ve also worked out a system of things I can do at the various levels of flare-up. If I need to rest but I’m not too bad, I’ll nap between doing sitting down things like making art, knitting or writing. If I can manage a bit of concentration but sitting at the computer hurts, I might take the laptop to bed and do some writing or draw in bed. If I’ve got a little bit of brain power but no body energy, then I’ll go to bed with a pile of art books. If my brain has gone as well, then it’ll be bed with a pile of comfort books (I like Terry Pratchett for comfort reading, the key is something fairly easy that you know you enjoy that won’t tax you too much). Fortunately I rarely get to the stage where I can’t read at all. You have to grade your activities and decide what really matters to you.

    At the risk of blowing my own horn a little, you might find my The Art Of Illness essay useful:
    http://kirstyhall.co.uk/blog/2009/03/the-art-of-illness/

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  9. Fatigue and pain seem to be the most underestimated aspects of disease — and the fatigue is perhaps the least understood in terms of how debilitating it can be.

    The well usually can’t understand how fast the these things can come on for the seriously ill. When you’re well, you can have a cup or coffee or linger for five more minutes before taking action. When you’re sick, the ability to do something is matched with the need to act immediately before it’s too late and another nap is necessary. Fatigue may be more severe for stroke patients but I bet anyone with a serious illness would say, “I can’t believe how much energy just being sick takes! I haven’t needed this sleep since I was a baby!”

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  10. Thank you, Kate. Thanks for explaining so well what it is like to be on either side of this exhaustion thing. I have more in common with your 21 year old self and it is hard not to try to “gee his ginger” as my FL puts it. When sometimes SLEEP would be the best thing for him. You’re doing SO WELL!

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  11. I’m a big fan of sleep! Now I want a coat of arms for myself just so I can put sleep on there.

    In the past year, for the first time in my life, I’ve been seriously sleep deprived due to having a baby. It destroyed my ability to think, my brain just wouldn’t cooperate.

    Now I am getting enough sleep I’m starting to feel normal and I feel like I’m regaining back some of that thinking power that I lost :-)

    I appreciate your posts about your recovery. It gives me alot of food for thought.

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  12. Dearest Kate – so very glad to see you are back at home in good hands, and immensely jealous of that giant Lindt bunny. I often wonder how high up the list of my possible luxuries for Desert Island Discs a bed would appear. Consitently near the top I have to say. Sleep, I believe, can defragment the brain after a period of overload. I hope- and expect – your delicious snoozes are doing you the world of good.

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  13. I’m a new reader to your blog, but find your posts interesting, moving and optimistic.

    I can completely relate to the ‘incredibly weepy and frustrated’ bit. I have an illness with a fatigue element, and I’m still getting to grips with it. My husband thinks I’m being moody when really all he needs to do is give me an opportunity to nap.

    Thank you for using some of your energy to share your journey with us. I’m finding it very inspiring.

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  14. Your post was a read-aloud on Easter afternoon…I love sharing your writing with my daughters…
    Here in the good ol’ USA…sleep is thought of as a negative thing…the less the better!
    I have raised my children to relish sleeping..in particular that lovey time period between wakefulness and sleep…the dreamy floaty time when the two begin to blend..
    All in all sleep is so restorative and helps us file away our info for the day..makes us “not crabby”..

    Thanks for sharing your journey with everyone..and continued wellness and restoration!

    Annie

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  15. Thank you for putting the fatigue into words, it’s something I find very hard. I’m so glad you get refreshing sleep too, enjoy it, revel in it. Tempting as it gets to spend all your spoons at once and wildly overspend (as I’ve done a lot in the past…) life is so much more pleasant if they’re carefully planned. Wishing you many more spoons, thank you again for putting things into words that I struggle to capture

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  16. Hope the walk was enjoyable as well as probably exhausting! May your dreams be sweet and healing, and furthermore, I will hope that you are never left bench-less should a instant nap be needed.

    I am so impressed with your ability to describe what you are going through. Though I know, that I do not fully understand, I believe that reading your words and thinking about them, makes me know a little more and understand a little better. Thank you!

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  17. Kate,
    Again you have done a superb job of articulating thoughts that are very difficult to assemble into a collection that will ‘speak’ to those of us who are still ‘full of beans’, and not sensitive enough to the circumstances of those facing physical and mental challenges. I cannot help but think that once you have come through this ordeal of rehabilitation, you will be a great ambassadress for stroke victims the world over.
    Sweet dreams!

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  18. I immediately caught on to one sentence in your post that I think I super important when we are thinking about any kind of sleep: “And, of course, it is when I’m sleeping that my brain has time to heal itself, so I have to make sure I get enough of it.” There have been many studies done about how sleep effects learning, and it is quite clear that the brain NEEDS sleep in order to form the proper neuro pathways to ingrain what has been learned. This is a reason why babies sleep so much, and this is why you sleep. I’m sure you know this, but I think it can be useful to think about things this way, to picture the pathways growing.

    Keep up the good work and sleep lots! Regrow those pathways!

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  19. You are a solid person, Kate. Once again, I Iaughed, I cried, and I grew a great deal wiser. Bless you and your journal. You are making the world a kinder place.

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  20. As the mother of a twelve year old boy I fully appreciate Tom’s depiction of sleeping on his heraldic shield. My guess is that one of the other quadrants would have contained an open fridge!

    Hope you’ve got a good mattress and some decent pillows.

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  21. I will never again feel guilty about taking a nap. Thank you for explaining how debilitating fatigue is.

    Have a wonderful walk.

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  22. When I was pregnant with our second son I was semi-disabled. What I figured out was that I had X number of steps in me every day, and I needed to make those steps count. No making a second trip back to the kitchen because I forgot a napkin, just be really careful not to need it. No walking to the front door to check if the mail had come yet; wait until I knew for sure it had. The spoon theory is perfect.

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  23. Sleep is wonderful, when I had bad stress a couple of years ago it was the only thing that made everything go away, but I can’t begin to imagine what this kind of fatigue feels like.

    Take care of yourself.

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  24. All I can say is you’ve brought me to tears. You explain so well something I’ve never been able to put a word to. I think I need a lie down. :)

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  25. I have to introduce you to this beautiful flickr group entitled ‘People Asleep in Libraries…’

    I think it’s beautiful.

    Library visitor

    Sleep is DEFINITELY an activity and I am glad you have already been introduced to the spoons theory; it is very useful when you want to make the most of limited energies.

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  26. What a beautiful post. Thank you!

    Today I just stopped by to say that we are thinking of you, and waiting eagerly for your weekend posts.

    I am happy to know you are at home now.

    Hugs from Toronto
    Maria

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  27. Another thought provoking post, Kate. Probably a good many of your readers have to ration their energy at some level or other. I surprised myself the other weekend, we had an unusually full day of appointments and cycling hither and thon. That evening I feel asleep after dinner!

    Good luck with your walk and have a good nap afterwards.

    All the best
    Dawn

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  28. Kate, I appreciate you using one of your spoons to write a post every week. I am glad that you are enjoying your sleep so much! I remember when I had a moderate case of H1N1 last summer, I had to take a nap after I took a shower, and so for a short time I had an inkling of that kind of fatigue. I hope you’re continuing to make little improvements, and that you stop in here whenever you feel too weepy.

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  29. I have been sick for exactly one year. Every single day I praise what I GET! Some days, I do not get so much! I do have a lot to be appreciative of, and need to keep that frame of reference or go absolutely whacko!

    I am appreciative of your words and work!

    Keep writing . . . we are reading!

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  30. I always look forward to your updates, and this resonates particularly with me; I am recovering from depression and a big part of that is learning to manage with the amount of energy I have and not try to do too much. You’ve described the position perfectly.

    Enjoy your walk, and your rest.

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  31. Isn’t it funny how life serves us up similar situations, but from opposing subject positions? I’m sure that your 21 yo self, although naive, was very kind, and that’s the most important thing.

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  32. Oh yes, those spoons. It is a very useful metaphor – particularly as it lets non-spoonies get an idea of what it means to have a finite amount of energy.

    Take care of yourself. And I’m thinking of both you and Tom.

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  33. I’ve been known to lay down my head and have a quick nap in the library. But in the East Asian department that is not really considered a problem- check out the Japanese commuters snoozing (standing up!) on the underground :-)

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  34. I can really relate to your full of beans enthusiasm story. I teach yoga classes and have for many years, when I think back to the early years and my full of beans self who had no understanding of illness, pain, or other things going on in people’s lives that are below the surface and the enthusiasm I foisted on my students… I am lucky to have any students left! :) It is cliche, but we do gain so much wisdom and compassion from our own suffering.
    The planning of the day and how you use your energy is a good way to remember what is most important to you, and to appreciate the moments you have, really it makes it easier to be in the moment more. I am sounding very philosophical this morning, my apologies. I am just starting my first cup of coffee, that is my only excuse. :) Have a wonderful walk today Kate. Here we are having a special treat meal later as reward for washing the windows and curtains we have neglected the last two years.
    peace,
    Virginia

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  35. I love the way you are learning to honor the things that are going on with your body. It seems as if you are making tunnels for the results of the stroke so that they can be paths to recovery.
    We are learning so much from you and sending you strength and love.

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