Mel asked me the other day about what it actually felt like trying to get my left arm and leg to move again. I found it quite hard to describe, and it struck me what a very peculiar thing it must seem to those who haven’t experienced it, so I thought I’d try to write about the process.

I should start by saying that all strokes are different and mine is in no way typical: though I lost all movement on my left side, I mostly retained sensation – my foot was, in fact, the only area in which feeling disappeared. And while I had a few auditory and sensory oddities, I was lucky in that the stroke did not affect my linguistic abilities, block out my visual field, alter my personality, or injure areas of the brain involved in planning and volition. I can only imagine how much harder the work of physical recovery is made by any of these eventualities. I am also lucky that my post-stroke experience is not painful (well not in conventional terms anyway). My limbs are often stiff and uncomfortable; sometimes they judder uncontrollably (a common neurological symptom) and, because it is weak and lacks control, my hip joint has an unfortunate tendency to slip in and out of place, but, my body doesn’t actually hurt . Again, I can only imagine how much more difficult learning to move again would be if the process was coupled with pain management.

Probably the easiest way to describe recovery from stroke paralysis is to think of something you physically cannot do (for example, to roll your tongue if you are a non-tongue roller), and then try rolling your tongue over and over again, hour after hour, day after day. Now imagine that your non-rolling tongue is a paralysed arm or leg. You are thinking about this thing that your body cannot do; but are you thinking about it correctly? Are your thoughts the right ones, the thoughts that will finally inspire your brain to make a connection and force the limb to move? Until you actually see a flicker of movement – until there is that tiny sign that the limb isn’t just completely dead – the process is incredibly dispiriting. But you have to just stick at it, and couple your thinking efforts with showing the brain what it actually needs to do. For example, when working on my arm, I would think very hard about reaching up for something; perform that action a few times with my “good” arm; then Tom or one of my physios would move the “bad” arm in the same way, while I tried to move it with them. It also helped if the arm had something to aim for. For example, my parents brought a massive tub of haribo sweeties to the hospital (I have a disturbing fondness for those foamy fake fried eggs). Tom would hold the egg out of reach, while I tried to get the left arm to move to grab it. Eventually, I found my fingers making a grabbing motion like the pincers of a lobster in response to my instruction to reach for the egg. Bingo! Once my brain had “found” this pincer action, I discovered I could use it to make the limb to do other things. So though I found it impossible to make the arm reach up by itself, if I pumped my hand back and forth in a lobster-like fashion, I could force it to judder unsteadily upward in search of a sweetie. In this manner, I consumed a lot of fried eggs!

I described the brain “finding” the paralysed limb and being “found” is really what it feels like: a sort of physical equivalent of something quite common and mundane – like remembering where you left your keys or recalling precisely when you heard that tune before.

But this physical act of finding is not, at first, consistent or reliable: in the same way that you might have to repeatedly probe your faltering memory for the recollection of that tune, you have to constantly remind your brain exactly what it needs to do to reach for something or to put it down. And in my case, this act of “finding” a new movement in the paralysed limb was often accompanied by a strange sensation: the kind of thing you feel when a roller coaster is about to plummet downward, or a lift starts moving unexpectedly. In other words, I felt an unpleasant loss of physical control – as if something were being done to my body – which is interesting, since what was happening was precisely the opposite (ie, my brain and body were both regaining control.)

After the eureka phase of “finding” a particular action, comes the long and tricky work of physical “learning”. And this learning phase is really hard: remember that recovery after neurological damage is not a question of movement coming back but of the brain figuring out everything again from scratch. Effectively, my brain has had to re-invent my left arm and leg (no wonder I am bloody knackered!)

So the difficulty of the learning process is increased because the simplest of gestures – things you don’t even think about in everyday life – no longer make any sense to the brain. An apparently straightforward left-handed action like using a fork is, when you think about it, incredibly complex: your fingers have to position themselves around the fork in a particular way; your hand must be held at a precise angle to successfully spear a mouthful of food, then your wrist (weak and unreliable post-stroke) has to raise and turn in order to lift the fork to your mouth. Mealtimes, in the weeks immediately following the stroke, were very weird. I knew I had to use the fork , so I watched how my fellow patients went about it and tried to imitate them. My first efforts were as clumsy and unsteady as an infant’s. It was impossible (and amusing) trying to spear or scoop up vegetables. I persevered, but when I failed and tried to transfer the fork to my right hand in order to eat, my left, white-knuckled from its efforts, remained gripping the fork and refusing to let go. I had to mentally shout “DROP IT” before the hand would finally obey.

If you want to have an inkling of what this not-making-physical-sense feels like, try this : sit on the edge of a chair, lift your right foot off the floor a little, and rotate it from the knee in a clockwise direction. Now, at the same time, put your right arm in front of you and try to rotate it in an anti-clockwise direction (as if polishing a table). Hard, isn’t it? Tom came up with this analogy and it seems a good one to me: the particular combination of coordinated movements seems to be something the brain simply cannot make sense of – but that’s not to say that with practice the brain wouldn’t eventually figure out how to do it, and that one day you might well be able to rotate your right arm and leg in opposite directions. This making-sense-out-of-what-seems to-make-no-sense is what physical recovery from brain injury seems to be about to me. My hands were constantly coming up against things that they just didn’t know how to do (plait hair, hold a knitting needle, use a fish-slice), and, more irritatingly would often seem to want do things of their own accord (much as your arm wants to rotate the same way as your leg in Tom’s example). Physical effort in one part of my body would inspire weird jolts and movements in another; the hand or leg would fire off in a random direction, or try to join in with what another limb was doing. This, when you experience it, is not only extremely annoying, but heightens that already uncomfortable feeling that one no longer has any physical control. But I have come to realise that these random movements are also obviously part of the brain just figuring out how to do stuff again and they do seem to go away with time and re-training. But even now, if I bounce a ball with one hand, the other will spontaneously join in.

Another example: it has taken me almost five months to teach my left arm to swing back and forth when walking. This is something that everybody does, and that you wouldn’t necessarily think of as a learned action, but when the brain has lost the part that used to control the arm, and has to rewire it all over again, all the arm’s “natural” movements become “acquired.” When I began to walk, the reciprocal movements of my left arm with my right foot seemed bewildering and nonsensical. It made my head spin when I tried to do it, and so my arm would just give up and hang limply at my side. So Tom walked with me while holding my hand, and, after I’d got into my stride, he would start to swing my arm forward for me every time I made a step. From there I progressed to constantly telling the arm to swing as I walked along, mentally shouting “MOVE” at it every time my right foot took a step. The resultant exaggerated swing was similar to that of a soldier in a communist regime, but a few months down the line, these constant instructions have clearly done the trick. Now my left arm swings naturally as I walk; I no longer have to instruct it to MOVE; and the only time it looks limp or droopy is when I am exhausted.

The “finding” and “learning” process of recovery is ongoing and with my leg and foot there’s still a very long way to go (you’ll note that everything I’ve written here has been about my arm: this is because the physical function of my leg is still very patchy, many of its movements remain puzzlingly incomprehensible, and I’m still at the “finding” stage with my toes and ankle). Rehabilitation is incredibly hard, unbelievably tiring, but often fascinating, and it has completely changed my understanding of my body, the relationship between the mental and the physical, and, by extension the way I look at selfhood itself. Back when I was a student in the ’90s, many fashionable theories of THE BODY abounded, and I remember writing pretentious essays in which I railed against the old Cartesian dualisms, dismissed the brain as being of no material importance, and hymned the praises of physical Sensation and Desire. But I am now of the opinion that Descartes probably had something there: my body is just something that my brain has invented. Bloody hell!

Unless one is a philosopher or psychiatrist, one does not have to reflect on what the brain is actually, physically doing until a part of it goes seriously wrong. Watching it figure things out again, and reflecting on its processes and behaviour at first-hand is both enlightening and remarkable. Indeed, the realisation that the brain can re-wire and re-model itself is so damned incredible that I wonder if this is what is behind that strange vein of megalomanical optimism that seems characteristic of many accounts of brain-injury recovery, like that of Jill Bolte-Taylor. (I hope that if I start sounding like that, you will all stop and tell me). So while I certainly don’t think that I am all-powerful because my brain has re-fashioned my body and got itself a whole new bag of neurological tricks, it is true to say that I am pretty much constantly wowed by what my limbs can now do. I find myself standing over the stove and thinking “just look at that hand! Check it out making an omelette! IT CAN MAKE AN OMELETTE!”

And while my hand now feels like it is “mine” again, it is still to me a miraculous gift – a brand new limb that my brain has just made up because I told it to (now do you see what I mean about the megalomanical stuff?) I suppose when it stops feeling like that – when I start taking it and my brain for granted again , I can think of both as being ‘recovered.’ And that’s something else to look forward to.

46 thoughts on “new limbs

  1. I used to race over hurdles, which requires a little bit of coordination of the limbs – lead leg (right, usually) straight over the hurdle with lead arm (left, then) thrust forward at the same time, with the other leg and arm trailing behind. The minute my coach asked me to work on these forms specifically and *think* about them, I forgot how to do it – in fact, I pretty much forgot how to walk because I swing my limbs intentionally rather than by habit. I can only imagine the difficulty you experience!

    I have the utmost admiration for your progress! And knitting! And Tom’s baking!

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  2. Thank you so much for sharing this. My husband suffered a brain haemorrage 3 months again and is paralysed on his left side so it is interesting to read about how he could be feeling and the problems he is facing.

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  3. I once felt the need to teach myself how to move my nostrils. I remember being very proud of myself after having figured it out. On a miniscule scale I can imagine that this sensation is comparable to trying to get your brain to discover a whole set of limbs!

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  4. Reading the last part of your post reminded me of an episode from a National Public Radio (US) show called “Radio Lab”, out of New York City (http://www.wnyc.org/shows/radiolab/). Two of the shows from the first season explored “Who Am I” and “Where Am I”. Both explored the connection between our brain and our perception of the world. In one of the shows, Dr. V.S. Ramachandran is confronted by a patient who is experiencing pain (a clenched fist) from an amputated limb (http://www.npr.org/templates/story/story.php?storyId=101788221). Just as you have been having to teach your brain that your right arm and leg are present, this doctor helped his patient “see” the amputated hand by using a mirror so that he can unclench his remaining hand and make his brain think that the amputated hand is unclenching. It was fascinating! I thought you may be interested in these podcasts~

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  5. My feed reader is showing a new post entitled ‘thanks, Mr Cameron’ but the link is not working, and I don’t seem to be able to find it here either. Frustrating – I look forward to your posts so much. Oh, did you take it down, maybe?

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  6. Thats very interesting!
    I once woke in the morning, feeling an arm across my adomen and when I tried to unstuck it I realised it was my own arm. I had been sleeping on it and it was dead for the world. I looked at it, realising it was really my arm, but it didn´t feel like my arm at all.
    Of course the sensation was very shortlived, I still remember it because I felt it very disturbing.

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  7. Replying here, as your new “Thanks Mr Cameron” ranty piece seems not to be viewable…… I hope the toryboy thought police are not at large!!
    Hope to read it soon. I’m so impressed with your grit and determination, much respect to you. Nil carborundun est… or something similar.

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  8. Rae mentions mirror therapy, which is exactly what I thought of when reading this. It’s been used particularly for sympathetic dystrophy and regional pain syndromes, but also for strokes, and seems v helpful in the rewiring steps.

    Here’s an article. http://www.medscape.com/viewarticle/582056 I’d be really interested in your thoughts – for me this is a fascinating example of the power of the imagination, and somehow fits in with narrative ideas of health too.

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  9. Thank you for sharing your reflections and the discoveries you’re making through your healing and rehabilitation process. I’m a psychologist, and I find brain function fascinating, especially as we know so little about how it works, really. So your thoughts and experiences are really interesting, particularly because you have such a gift of putting these into words that we might be able to grasp.

    Wishing you continued recovery and discovery.

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  10. Your posts on your recovery have been amazing, and I remain astonished by how well you are able to articulate what has been happening to you both physically and mentally these last five months. And since I’ve never mastered colourwork, your knitting skills also continue to dazzle!

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  11. Very interesting observations.
    When recovering from multiple hip fractures, I was at first puzzled, and then just laughed when I tried to move my legs in certain ways and…nothing happened. Like getting an envelope marked ‘return to sender’. Or better still, like a certain postmistress who, at closing, used to take a rope & stand and cut off the line at whatever number she felt like dealing with. Come again tomorrow. Brain vs the great, officious body bureaucracy: We can’t *possible* hook up your [insert deeply necessary utility here] for at least 4 months. So sorry for the inconvenience!
    Stuff was clearly going on, but not at the level of consciousness. All I got was call centre muzak, aka constant pain.

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  12. I have not had a stroke, but I had a serious injury to my left radial nerve which paralysed my hand from the wrist down for several months, five years ago. I recognise so much of what you say, even though the damage was out in the peripheral nervous system not centrally in the brain. My brain had to re-learn how to move my hand, and to feel as well – as the sensation came back for a while it was wired up all wrong and I would ‘feel’ things in the wrong places. It is all quite astounding.

    Have you heard of mirror therapy? You put the affected hand or foot in a box which has mirrors on the outside and then put the unaffected one so that it is reflected in the place where the other should be. As you move the ‘good’ one, your brain is tricked into thinking its reflection is the ‘bad’ one working and the connections join up in the brain. That’s the theory, at least. I did not get round to it for mobility as that came back as my nerve healed, and I do not know whether there is evidence for its use in strokes. I was raising it as another example of how weird all this stuff is.

    Thank you for sharing all this, I really look forward to your posts.

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  13. I do hope that you will publish your recovery story someday so that more people can benefit from this self-and-other reflection. I find it so enlightening!

    I tried to experiment with some of the things you were describing. Since I can roll my tongue, I couldn’t use that example, so I tried something that I can’t do and can’t figure out: wiggling my ears. It seems like it would be a simple task – tell the little muscles behind my ears to contract and relax. But… just as you described… my brain doesn’t recognize or acknowledge any little muscles behind my ears. As far as my brain is concerned, I don’t have those. I tried – as you suggested – to tell my brain to tell my muscles to move, over and over, until it did find and try them. My brain told me – very insistently – to STOP doing this! I had to force myself to keep trying this task of muscle-recognition. I had to override my brain’s natural tendency to believe that it had completed all Sophia-muscle recognition work back when I was a toddler and now had so much else on it’s agenda that it couldn’t go back to that. This was a revelation to me! My brain did not want to work hard at a new task. My brain wanted to use all its energy coordinating the multitude of tasks it was already doing. So what if there were muscles it didn’t “know” about? It could care less! It was Too Much Work, it told me! How exhausting!!!! And that’s what you’ve been telling us all along.

    I wish I could send you a bottle of my energy – it would be old cloudy glass and green, like sea glass with a fresh sea air breeze when you opened the bottle – to help you with this work. But instead, I send you hope and encouragement. You’re doing a fabulous job.

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  14. Wow! I remember watching my daughter as an infant discover her hands and then the first time she actually grasped a toy with “intention” It seemed like such a miracle. And again, all I can say is “Wow!”

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  15. Your ability to so effectively describe this process, and do it with a sense of humor keeps me in awe! It makes me tired just thinking about trying to do all that you are doing to recover. Holding continued good thoughts for more hours of success and less hours of feeling exhausted!

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  16. I have this delicious image in my head of thousands of people all over the world sitting on the edge of their chairs trying to rotate their right leg one way whilst their hand goes the other. And failing, and trying again. And learning something new. Because you get us all thinking about what it is to keep on learning/re-learning, to keep coming back, to keep trying, not to give up.

    Thank you Kate

    Tilla

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  17. It made me think: this is what babies go through to an extent, learning how to do everything, and maybe that’s why they sleep three quarters of the day, from the exhaustion like you!

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  18. I found your blog a few weeks ago and juts love reading here. You are a great writer and your thoughts are always interesting. I feel like I just learned more than I’d ever wondered about post-stroke recovery, and it was so incredibly interesting. Brains. Way cool. And mysterious, I might add. Thanks!

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  19. Thank you for this post – it’s amazing to get some insight on what your recovery is like and how difficult it is to get your brain to “remember” how to do things. I remember being in a literature class, studying William Blake (I think it was a tutorial on the Four Zoas and how there needed to be some sort of unity/discourse between them before Albion could wake and move again), and trying to get other people to see how amazing it was that we could just move a hand, trying to describe all the actions and nerve impulses and chemical exchanges that were necessary just to move one finger. I read your post and thought “this is what I was trying to say in that tutorial”, and you described it with far more eloquence than I could hope to achieve because I was basing it on my scientific studies rather than experience.

    Best wishes on your continuing recovery!

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  20. I so admire your tenacity. I don’t know if I have suggested you listen to this before, I love this program, but here goes. Matthew Sanford is a paraplegic, and a yoga instructor. Krista Tippet interviewed him for Speaking of Faith http://speakingoffaith.publicradio.org/programs/2010/bodys-grace/
    he has also written a book Waking, a memoir of trauma and trancendence., which I have not yet read. http://www.amazon.com/Waking-Memoir-Transcendence-Matthew-Sanford/dp/159486845X/ref=sr_1_1?ie=UTF8&s=books&qid=1277680352&sr=8-1
    Though by listening to his interview, I really do want to read it.

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  21. It *is* truly amazing what the body and mind can do. I am always wowed by how thoughtfully you have approached your recovery–and how articulately you share the process with all of us!

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  22. We were at the Royal Society’s Science Festival at the Festival Hall today – kind of an ideal home exhibition for science (complete with masses of leaflets and free gifts – brain shaped stress busters, robot decorated keyrings…) The Cambridge brain sciences stand had slices of a brain which had undergone a stroke. There was a big black mark (the kind of thing that the nuns taught me stained my soul) and it seemed impossible to think that – as the research scientist was explaining to us – a brain could recover from something seemingly so catastrophic.

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  23. Brains are so amazing, and so fragile. We’ve known for awhile you have an especially good one, good thing. Keep it up Kate, and keep up the resting too. Thank you for all your posts. Virginia

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  24. You are on an extremely interesting journey that I wish you didn’t have to take.

    I send healing thoughts to you several times a day and am awed by the persistance you show and the success you have had. All my best to you and Tom.

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  25. Thank you so much for continuing to write about your recovery. You are an excellent writer (but of course), and I’ve always enjoyed how well you present your thoughts on knitting, walking, and other subjects. Now, your representations of your recovery and its accompanying experiences take a whole new subject area and make it engaging, clear, and illuminating. Megalomanically optimistic or not, I don’t think many people could or have written about this subject as well as you.

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  26. my brain has created my body!
    very interesting, as i set off on the reading of roy porter’s Flesh in the Age of Reason. new to me, and probably not to you, but his deeply thought-through theory of the case, plus wit and erudition, truly feels like coming home in terms of reading. recommeded!

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  27. Reading this post was just amazing – the brain and how it functions, the things we take for granted. I am so glad you are sharing this amazing recovery with us! I wish you well!

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  28. Thanks so much, Kate for this informative post full of reflection. I enjoyed doing Tom’s exercise so that I could get a hands on feel for what you work at every day. Your optimism and appreciation of life on the whole is just inspirational.

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  29. Have you seen the movie Lorenzo’s Oil? I think it’s near the end of the movie where Lorenzo’s mother is trying to help him regain use of his limbs. She keeps saying something like “Tell your shoulder to tell your arm to tell your hand to move your little finger…” over and over.

    Your account has been really amazing and eye opening. Thank you.

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  30. dude, this is FASCINATING.
    you know, when I blew my knee out a few years ago, toward the end of the rehab process, the thing that made me know things weren’t right yet was that I could “feel” my knee. It was such a weird thing to walk and think “now see, my right knee which wasn’t injured is just walking along and I have no sensation of what the knee in particular is doing at all, I can’t feel my knee separate from anything else, I just know that I’m walking, but with my left knee, I can actually feel its actions separate from the rest of my leg with every step, every stair, etc.” It wasn’t until I stopped being able to differentiate my knee from my leg when doing regular things, when I stopped being able to sense it as an independent body part, that I really felt “healed”.

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  31. Thank you so much for sharing these reflections! The brain is such an amazing thing (of course, I’m biased, being one of those crazy people who actually do think about how it works, for a living).

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  32. I am constantly amazed at how far you have come since your stroke – I’m sure it won’t be much longer before I no longer have to send you best wishes for your continued recovery, as they won’t be needed!! Sorry, that’s a clumsy sentence, but I’m half-asleep catching up on blogland after a busy weekend, including a day at Woolfest!!

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  33. Kate, I love your posts and your reflections. They are fascinating to me in so many ways: as a retired physical therapist, as yoga practitioner, and just as a fellow human being. Thanks so much for sharing your thoughts and insights on your rehab. road.

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