(taking a break by Blackpool tower last weekend)

edited to add: if this is being read by Colin, the piping cabbie with a penchant for fairisle, the remarks that follow do not apply to you!

It has been a tough few days. After the windmill walk, I really was totally whacked and spent several days resting and doing very little. As well as being physically exhausted, I confess that during that time I also became rather tired of just being disabled. I imagine this is a common feeling, and one familiar to anyone in this or a similar situation. Overall, its not been a bad week: I spent a lovely afternoon in the Botanics with a friend and I managed to read a few books (this is progress) but there were certainly some low points. Tom had booked opera tickets for our nominal anniversary. Being among a tightly packed crowd of the opera-going Edinburgh bourgeoisie was sheer hell, and there was also an incident during the interval in which a woman was incredibly discourteous. This rather upset me, and I was also bothered by being physically uncomfortable during the performance. My foot was giving me jip; my leg kept seizing up and my neck and shoulders were in agony. This is run of the mill sort of stuff: theatre seats are unpleasant to sit in, people are just eejits, and, at the best of times, I’m not that fond of crowds. But the experience came at the end of a week in which I’d been allowing myself to become frustrated by everything: my limited choices of clothes and footwear; planning out each day around potential nap times; having to ditch something I’d been knitting for several days because of a dye-lot issue; the annoyance of not being able to reach up or down for things, get things out of cupboards, or put them back again; the fact that I am so damn tired most of the time that I can’t do very much at all. And last Wednesday, I was taking my daily turn around the park when I was filled with an overwhelming urge to break into a run. The urge in itself is perhaps a positive sign, but my inability to put it into action felt sort of terrible.


(I love photographing Blackpool.)

I have also been troubled this week by the fact that, as a young person who has suffered a major stroke, I appear to be inhabiting a sort of a script. The script is one which I do not actually feel myself to be acting out, but which the rest of the world assumes I am performing. I can read the script on the faces of taxi drivers when they ask what has happened to me, or on those of the adolescents who watch the way I walk in the park. According to the script, having a stroke at 36 is a tragedy, and I am now a tragic person. I have to take a cab to my physio appointments twice a week, and the encounters with the different drivers are very interesting. After the palaver of getting me and my leg into the car, the driver always asks what happened (expecting me, I think, to have a story about a broken leg or ankle). Now, I am quite used to the idea of having had a stroke, and it bothers me not a jot to talk about it, but other people’s reaction to the information can be peculiar and unpredictable. One cabbie immediately closed down the conversation by telling me he wished he hadn’t asked; another apparently dour and hardened chap actually wiped away a tear. Whatever the particular nature of their reaction, every bloke is terribly shocked by the news that I – a young woman – have suffered something that they assume happens only to old people. In their eyes, I am immediately transformed from an ordinary person who they think may have a couple of broken bones into a tragic disabled woman.

The script the cabbies think I inhabit is summed up in the first two lines of a tune by fey Scottish songsters, Belle and Sebastian: “He had a stroke at the age of twenty-four / It could have been a brilliant career.” This song is a pointless piece of whimsy about youthful promise and lost potential, but what gives it force is the idea that something that should occur in the elderly has happened to the very young. Strokes occur in individuals of all ages – including fetuses – and are much more common in women under 40 than you might think. The shock I see on the faces of the cabbies says more about their lack of information than anything else, but I confess that the repeated experience of pity and/or lack of understanding from complete strangers is really starting to get to me. After one of the most tricky of these encounters (in which the sheer weight of the cabbie’s freaked-out sympathy was just unbearable) I met a woman in the physio waiting room who had a stroke eighteen years ago when she was in her twenties. Almost the first thing she told me when we started discussing our situations (as you do) was that it had been almost as difficult for her to cope with other people’s reactions to her stroke as it had been to deal with the implications of the stroke itself. She described being in the weird position of having to comfort people who assumed her life was over. This, she told me, made her a very angry post-stroke patient. I’m happy to report that, so far, the only reaction that has really annoyed me was from a nursing assistant who told me that “this must have happened for a reason” before spouting some gubbins about guardian angels and suchlike. So in general, I am not at all angry, but I do find these encounters with ill-informed folk hard to deal with. Part of this, I imagine, is that I am only now starting to come to terms with the difficult reality of being a disabled person in public; and part of it is probably that the trajectory of my own script is still uncertain. Perhaps, in fact, I am just a wee bit afraid of inhabiting the script that the cabbies and Belle and Sebastian have written out for me. I know I am not going to be the-person-whose-life-was-ruined-because-she-had-a-stroke-aged-36 and I really do not feel in the least bit tragic (I would laugh at myself heartily if I did) but it is true that I am not sure myself what my disability means yet. Dealing with that lack of meaning is hardest on days when one feels weak and wonky, and is made more difficult when the rest of the world seems to have already made up its mind.

Next time I am going to write about a completely different kind of human encounter — ie — the heartening and affirming effect of your correspondence. I’m about to begin responding to everyone who wrote to me while I was in hospital. This will probably take some time – everything takes time – but it is a process I will really enjoy.

In other news:

* I have set myself another goal. The windmill walk was entirely flat, and I feel it is time to attempt some proper inclines. Like Rome, Edinburgh is famed for its seven hills. Over the next seven weekends, I intend to ascend all of them in turn, concluding with the most tricky — that is: Mead Mountain. (Hurrah!) I am looking forward to this, and will begin with Castle Hill. I intend to walk up from Holyrood and negotiating bumbling crowds of tourists will, I imagine, prove more hazardous than the actual ascent. . .

* To manage the hills, I really need to work on my balance, my hamstring and knee strength, and the old dorsiflexion. I am going all out with the foot exercises and have acquired a balance board – fun!

* I visited the neurologist and asked to see the pictures of my brain. I’ve been reading all sorts of things about neuroplasticity and brain injury, and it was really fascinating to take a three dimensional look inside my own head! I could see all the areas of damage in my motor cortex — very interesting indeed. I just wish I could now take a look at all the repair work my neurological monkeys have performed over the past few weeks (what did they do with that blocked artery and to where did they re-route all of that lost stuff on my left side?) but I doubt the NHS budget extends to this.

116 thoughts on “scripts

  1. Kate, I am new to your blog ( I left another post saying same on a more recent entry) and I know you must hear it all the time but I just have to join my voice to the chorus.

    You are truly remarkable.

    So far, for my own personal/much less intense physical/personal reasons, I have only been reading your “after” posts, to which I was directed by a fellow Raveler during a pertinent online conversation. I fully intend to go back and read the “befores,” and am certain I will find much the same bright, determined, insightful person. Even from the little I have read so far, it is clear that have always written your own script, and while a Deus Ex Machina gave your plot an unexpected twist, you are still very much in charge of your own story.

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  2. Dear Kate, Thank you for writing so openly about your experience. I have always enjoyed, learned, and experienced via your blog in the past for the creative, academic, mundane about knitting, Scotland, hiking, academic topics, etc. and your experience with your stroke and recovery is no less. It broadens my experience and I am grateful I discovered your writings. Even though I don’t know you personally, you have been in my regular thoughts during your recovery. I am truly inspired by your outlook and wish you the best.

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  3. Your post made me think about one of my best instructors from grad school–she had had a stroke at some point that mostly affected her facial muscles, but it was clear that she was not one to be pitied. I wonder if, for most people, their reactions of pity or of making you into a pitiable victim, have more to do with their thoughts about how they would be able to cope if put into the same situation. It is scary to contemplate, but you certainly prove that we can all handle more than we think we can. I always look forward to reading your frank posts, and I’m cheering you on in your hill-climbing endeavor!

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  4. Dear Kate:

    Another wonderful post – thank you for these updates for your readers everywhere. I do think of you often and wonder how you are today. Without the generosity of your posts, we would all only be able to wonder and to speculate. Thank you again for sharing your days and impressions.

    Just wanted to tell you how very strong you seem to me. In all the many posts you have given us since the incident, not once have I ever detected anything but cheerful goodwill in your voice. Never. It doesn’t matter the topic, or the point – what I hear is determination and courage and matter-of-factness all interlaced with this incredible goodwill (for lack of a more eloquent term for what I really mean). I just love that about you.

    Mount Mead – hurrah! That will indeed be a very happy day. Onward!

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  5. Dear Kate

    This was a very interesting post. At first I felt angry. I wanted to explain myself.(No I´m not a cabbie.)
    But I think it´s always so very difficult to react the right way so not to offend. Everyone has their own right way. I have messed up several times, either taking it to lightly or not and I do not always ask when I see that something is amiss even if it is very obvoius. In case I react the wrong way.
    The reason for this that I in my youth had a friend that suffered from OI. He was (and still is) about one metre high. He once complained about people looking so oddly at him, and then I told him (my excuse is that I was a rater sullen teenager at the time) that he probably also would stare if he saw someone so small as himself. At first he got very mad, then he actually laught and said that I was right.
    I´m glad to report that that accident has followed me since and I´m really trying to have the right answer or reaction but I can see that I haven´t always.If you have any good hints of proper reactions, please tell me.
    I hope the moneys keep up their good work. You are a fighter and everyone that reads your posts know that you do not need to be pitied. We just admire your strenght.

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  6. Its so interesting to hear of the reactions you get. I’ve been living with chronic pain for the last two years – I’m in my early thirties, with no visible sign of whats going on. It is still taking time to realise where my life is in terms of how I can work and live with this disabling pain, so I really understand the journey with realising the longterm implications of your situation and I think it does take a loooonnnng time.
    In terms of people’s reactions – as my condition is invisible, I’ve often wanted to use a walking stick or some such visual clue to others that it might be good if they could let me go ahead or give up a seat for me. I am on the opposite end of the spectrum and its interesting to hear that on your end there are many problems too – perhaps a wish for the state of your health to be invisible so that you don’t have to put up with people’s view of it 24/7.
    And much as I would like it to be more obvious for me, I also hate the fact of having to share my medical history with people at times.
    Most of all, I think it takes a long time to be able to understand any major health issue, and while you are doing that, its very hard to have to discuss it with everyone you meet every day.
    I send you loads of good wishes, and gratitude for sharing your story. I think its a truly amazing thing that you are doing, that has struck so many people and I really applaude you, your honesty and your bravery.

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  7. That shot of Blackpool is stunning and more than a little mysterious, Kate. It’s nice to be able to picture where you are.

    I admire your toughness about this whole mess. You refuse to be pigeon-holed or sidelined, but more than that your sense of wonder and connection with your own body is a joy to read. As always there is much food for thought here and much to celebrate. So glad you are in the world and writing about it. Go get that first hill like the champion you are.

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  8. Ha ha, I guess you could say we all write our own scripts, but everyone else likes to get in a footnote :)

    Hang in there, praying for you, and wishing you a really great week! I can’t tell you how much I appreciate your writing!

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  9. It so good to read your words, love your writing! And I always learn something. take care and keep on going with that rehab. x

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  10. I had a teen-aged female patient with an inborn immune defect, resulting in her having many surgeries on her leg to remove abscesses, leaving many long scars. When people asked her what happened to her leg, she would tell people she was bit by a shark. She was a bit tired of the “tragic young person” reaction she got when they were told she had an incurable disorder, so she invented an interesting story.

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  11. I learned a great deal from this posting and I find myself wondering whether you may find it equally (perhaps in a different way) disturbing or irritating to have people frame you in their minds as a “brave person”–I was thinking this about you and then caught myself at it, in effect creating another script that is more about me and how I feel about another woman about my age having a stroke than it really is about you. In admiring your bravery (as we can’t help but do), we also create a script that is still ultimately about your calamity rather than about you. Even a flattering script is still a script. But maybe we can get out of that trap by remembering that we also already admired you for all the things you have always been to this readership: a fascinating, talented writer who clearly knows about many more things (even!) than she blogs about. Your entries about your stroke have continued in this vein: We all, I think, respect you tremendously for making such a thoughtful record of your experience for us–turning it into something we are all learning from.

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  12. There is never anything else that should occur in our lives other than what has/is. This moment is perfection, how ever awful one might find it. It is what was meant to be.

    To quote a knitter, Meg Swansen, “Onward!”

    To quote Unknown on a favorite card, “Bring on the fresh horses!”

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  13. Thanks again for sharing your experiences. I have just knitted the headband from your walking outfit pattern, as a birthday present for my sister. It was my first real piece of colourwork and I am really thrilled with it. While I made it I was thinking about you and wondering how you were doing. I am sorry it has been a bit of a crap week, one way and another, and I hope the coming one is better.

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  14. Dear Kate,
    Just want to send a hug and a hello. Your posts are a high point of my days.
    A friend sent me card with this poem on it:

    I walk,
    I fall down,
    I get up

    Always, I keep dancing.

    Thank you for dancing your words across the ocean and giving us a share of your determination and stubbornness. Being alive is such hard work. But this is what we choose, every day…we choose life.

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  15. I’ve never had to imagine my brain re-routing its traffic to bypass injury, but I do sometimes wonder at the way it? the monkeys? little grey men? file my memories for me. They must work so very hard, recording what I access most frequently and shunting the unused stuff into the archives. Astonishing. And all done with chemicals. We’re amazing. You are amazing. I understand the script completely; I had a conversation last night which should have followed the conventional script about death and funerals, but in fact took a sudden 35.7° turn as we all agreed that sometimes, often, death is a good thing even for the young, and that it is shameful that our society is so reluctant to accept the reality of mortality.
    Enjoy your walks; we had a glorious long weekend in Edinburgh a couple of years ago, and I shall never forget walking to Leith for dinner (we took a taxi back, as some of the areas seemed likely to be unsavoury in the evening). The cab drivers had special plastic seat covers for Saturday night in Edinburgh, and ours was pleased we didn’t need them. And Arthur’s Seat, and Castle Hill, and half-cows and chimneys! Edinburgh is a city of chimneypots.

    I think of you, brightly coloured and determined, striding along the pavements, and I wish you well and happy and free to live the script of your choosing.

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  16. Hi there Kate. I love seeing your photos of Blackpool and St. Anne’s. As for the opinions or assumptions of others, I feel obliged to comment, although I am not sure what to say. Just that I am not sure that my initial reaction to someone in your situation would be all that different from those cabbies. I feel like I know you a bit through your writing, so I would probably not display my ignorance or be as annoying. In fact, I am quite used to a certain amount of discrimination based on ignorance (I am Chinese-Canadian and I teach at university), so I would not have any pre-conceived ideas that you “must be” going through any particular pre-set experiences. I am, however, ignorant and uninformed in my own way. When you first had your stroke, I did think is was a “tragedy” especially in one “so young”. Sorry! It is just a way of participating, of reaching out, with the emotional tools one has at hand.

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  17. The other health script I hate is the one where when a person becomes ill, others try to work out what that person may have done/not done/eaten/drunk &c to bring this illness on. No one seems to go with the “shit happens” philosophy any more and I find it incredibly annoying. I hope this is not a script you will get to go with the “tragic” one, otherwise I should think you’ll be braining people with your stick!
    I have to say I would probably go for the making a story up line. I would get thoroughly sick of the reactions you’ve been getting. Oh, & I agree the “angels” person should be kept away from patients.
    Keep on keeping on!

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  18. Dear Kate
    I’m a portuguese reader who bought you lots of postcards but lost your address and could send them on time… I would be very pleased if you could give an address to which I could send them, after all they are yours ;)
    My dearest aunt passed away a few years ago, she had a brain tumour but due to her last surgery she had a stroke, it afected her right side but also speach… So reading you it’s like knowing how she felt but couldn’t tell… Thank You
    And I’m pretty sure you are going to recover, you are an extraordinary woman nothing can stop you!!
    Oh and because of you I started having knitting lessons with my mum… you really are an inspiration…
    (this is pretty much what I’ve written in your postcards…)
    Lots of Love
    Ana
    PS: even though we don’t know each other, I really care about you… I think this is one of the amazing things of blogland

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  19. Dear Kate, I completely agree with Ann Boleyn Pole that you make us kinder and wiser with each post. As for people wishing you to inhabit a script, I think it has a lot to do with the fact that, precisely, you *do not* inhabit one –at least, not a common one— and therefore they do not know exactly how to behave or what to say, and in their hurried search for the appropriate reaction they do or say exactly what they should not. I also think it is a reflection of their own fears of death or sickness, and the tragedy really is (or would be) theirs –which is why they ask to be comforted. And it must be difficult to be graceful about it when you have to deal with your own frustrations all the time. I hope you do allow yourself to express your angers and disappointments and be comforted at times, because it is also part of the healing process. Nicolas Bouvier (http://en.wikipedia.org/wiki/Nicolas_Bouvier) wrote beautiful pages about how easily Korean people can weep, and let themselves and their feelings be cleansed by their tears.
    Thank you, Kate, for this other lovely post.

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  20. Although it’s frustrating to deal with other people’s perceptions of an illness or disability, I’ve found the other people’s medical phobias to be the most difficult to be tolerant of. Avoiding uncomfortable medical tests/procedures is not an option for anyone who is sick and hearing the (supposedly) healthy express that they can’t be bothered or just plain aren’t willing to have a test or procedure is endlessly frustrating. Those who say that they can’t handle needles or the sight of blood are the most challenging to respond to of all.

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  21. Kate, the sheer sharing of your experience is very powerful indeed. You write such deeply satisfying posts. And give me so much to think about. Thank you.

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  22. KATE – how I enjoy as always your posts – who you are and how you see yourself and the world around you has not changed – just like always in life you are faced with a new challenge , and you will surely handle it like you handle everything in your life – you face up to challenges boldly, with critical analysis and determination— but hey who asked for this !

    – really feel for your frustration, – its such a pain when we can’t make our bodies do what we want eh ?

    – keep you in my thoughts- know you have support here and a good listening ear—-cheers —pat j

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  23. Bravo Kate! I love your outlook, it’s so nice to know there are awesome people out there who don’t harbor on their pain and don’t expect others to do it for them.

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  24. I’m 24 and I’m disabled due to a chronic health condition. It makes me feel very uncomfortable when people ask why I use a walking stick, it really is none of their business. Please do not feel obligated to tell anyone what is wrong with you. Though in some ways it can be enlightening for the person asking the question, more often than not it only leads to more uncomfortable questions!

    I get taken to university several times a week by the same taxi company, and when one driver got too personal with his questions and comments, I told the company not to send him again.

    I wish you all the best with your goals!

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  25. “If you have come to help me, then you can go back home. But if you see my struggle as part of your own survival, then perhaps we can work together.”
    (Coalition, September, 1992: 2)

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  26. A long time ago something happened to me which was tragic and made everyone around me inarticulate with shock. I was determined that it would not define me, I did not want to be ‘The Woman Who…’ for the rest of my life. I chose to walk away from the darkness towards the light and now it is part of who I am but not all of who I am. You have made the same decision and in time you will discover that this extraordinarily challenging period is only part of who you are. In the meantime you inspire and inform. Thank you.

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  27. I went through a very similar (reaction-wise) experience when my boyfriend left me. Ours was a very fairy-tale and happily-ever-after sounding story. And, as many people do, even when we had squirmishes we hid them from other people and kept up an image of a perfect couple that never has the slightest problem in their relationship – even when we started having BIG problems. So, when, in the midst of all that, I had to announce to people that he had left me (which even for me, despite the fights, was sudden and abrupt), all I encountered was shock. Instead of getting support from people, I would end up on every single occasion trying to help THEM cope with it. This, surely, was partly my own fault, due to how I had presented the relationship before, but that did not make it any easier…
    You are setting yourself some immensely challenging goals, good luck and keep strong!

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  28. You truly stun me with your amazing ability to articulate not only the relaying of your experiences (whether a walk around Philadelphia or your stroke) but precisely how it feels and what feelings and sensations are going on in your mind. These vague, nebulous things to me that I’m well aware of but can barely (if even) describe, you can do so in such a way we understand just what you mean, what you perceive, and how you feel. It’s an incredible gift, coupled with your curiosity and thirst for knowledge. What an incredible combination. I send you best wishes for your further rapid recovery. Onward — just be kind to yourself on those seven hills!

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  29. Dear Kate,
    I’m not sure if anyone who has commented before me said the same thing, but I would be interested in knowing what you think the ideal reaction would be when you meet a stranger. How would you love them to react? When I think about I would do or say if I met you in the street, I’m not sure I would know what to do! Or say. If you share with us, perhaps myself or someone else will remember your words one day when the meet another young person who has recently had a stroke, and we will make them feel great instead of tragic.
    Thanks,
    Anne

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  30. Oh, Kate! You’re so right … folk just don’t realize how insensitive it is for them to reply “BUT, You’re too young!!”

    It’s a bit of an education for them to learn that this stuff doesn’t just happen to the elderly. My heart attack at 43 still blows people away 10 years later. I tried hard to become their “teacher” in this, but after a bit, it just gets to be too much when you’re already working so hard on recovery!
    ;)
    I think your plans for the 7 hills are excellent goals. I can’t wait to read your reports. I am cheerleading from the stands here in the US.
    (((((hugs)))))

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  31. Kate, thanks for sharing the journey. We are not always responsible for the things that happen in our lives, either easy or challenging, but we are responsible for our responses to those events that come our way. It appears from your comments that you have taken a challenging situation, and, that you are in the process of making the most of the journey. I wish that I were in the position of being able to walk the hills with you, but be assured that I will be cheering you on.

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  32. I had a friend, who had three brain tumours. She was very open about it, as illness is nothing to be ashamed of and it can happen to anybody. Of course se illness bothered her, but what bothered her more was other peoples reactions. Some people tip-toed around her, some people shunned her. The surgery after her second tumour left her disabled in her right side. Suddenly, she needed a crutch (I am not sure if that what it is called) to walk and it was difficult as it strained her of energy, leaving her tired and exhausted. That crutch made some people treat her very disrespectful, like she was mentally retarded. She was very intelligent, strong and a real embracer of life. She started her own company at age 27 and had a staff of 30 at the age of 40. After her third brain tumour she died. For no reason at all. She got very sick and it had nothing to do with angels or destiny or anything predetermined.

    So it made me very upset to read about the disrespectfullness of some people. About the comments that your stroke was ment to happen (what utterly nonsense, that nurse should get a new job) and about taxi drivers who wished they never asked.

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  33. Your posts in past months have moved me, and this one in particular will likely change my view of people I encounter…thank you! I wish you great success in your seven-hill-goal…have always thought that a positive attitude can carry people far, and you are proof of that!

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  34. As always, your post has made me think and ponder changes in my behavior. I am often frustrated by others imposing what you call a “script” on me, but how often do I put others into a script based on little bits of information about them. Thanks for writing and sharing about this part of your life journey. If it makes you feel better, I think you have the best sense of style and great shoes.

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  35. I often feel as if we are expected to follow other people’s scripts, as if who we are and what we do formulates a flow chart in their heads of acceptable pathways and decisions. The only tragedy would be to blindly follow these scripts.

    Write your own.

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  36. Yes, people can be so thoughtless, especially when faced with things they don’t know anything about. I have grown up with one of my best friends in an electric wheelchair due to a muscular disease. And people have so many strange reactions and techinques of avoidance, you could barely believe it. Even so, the most thoughtless comment was made by a doctor, seeing a picture of him, and commenting upon the fact that he would probably die soon. A very strange comment to make about somebody’s friend.

    The best of luck with your continued recovery, and thank you for sharing so much of it here. Your writings always give me so much to ponder, and your knitting is very inspiring.

    Best wishes, Marianne

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  37. (((((Hugs)))))

    I think some people’s reaction can be a case of “eek, that could happen to me”, as in she’s young, I’m young (or young-ish with a lot of cabbies) and if it could happen to her it could happen to me and a lot of people don’t like facing evidence of their own fragility.

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  38. We are very lucky to have a nesting box with a camera in it. We have been watching over the last week or two the antics of the blue tit making her nest.
    Such determination, attention to detail, tenacity – every piece of straw and grass put into exactly the right spot – she never stops – in and out all day long – moulding and shaping the nest and getting it ready for the next phase in her life – it’s absolutely fascinating. Sometimes I wonder why she does certain things – like ‘shoogling’ around in circles- then it becomes clear as the next stage of the nest takes shape.

    We are eagerly awaiting the ‘big event’. Hopefully there will be eggs soon and she will hatch them out but we know too that at any stage and for the strangest of reasons she may abandon her nest and her work and effort will be in vain. But maybe not – only she will know whether to stay and use this nest or to move on to another one. It’s all quite fascinating to us – just one wee birdie in a huge big world but we feel honoured to be a part of it. i just thought you might like to hear about it.

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  39. Best of luck climbing Edinburgh’s hills. I visited Edinburgh last month and was tested by those lovely hills. My son (no Magellan) kept taking us up and down the wrong, and deeply sloping, alleyways in a quest to find our rented flat (all while carrying luggage). After finally reaching the courtyard where the flat was located, we had to walk up six flights of stairs to get to the flat. I made it, but my son got an earful. The rental agreement should have had a “you must be this fit to stay here” clause.

    Clearly, Edinburgh is a wonderful place to challenge your fitness. Happily it has wonderful vistas that make it worthwhile. Best of luck dodging tourists.

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  40. So many commenters have said so much so well ahead of me, that I feel a bit… limp… in saying that you must not define yourself as being “disabled” – and I don’t think you will, but I know that the average cabbie / kid in the street sees only the label they slap on you, and don’t know who you are, and you must not let their definitions grind you down. You have one of the most well-defined fearsome intellects I have ever encountered, and although there are a lot of adjustments to be made to living with a body that doesn’t behave like it used to, you are still “you”, and that’s a pretty formidable individual. I have become acutely aware of the expectations of “old age” that people slap on to my FL, and which he never accepted until his body started to let him down. Now he needs middle-of-the-night reassurances that I still love him, because he is still the same person inside the broken skeleton. Even if he isn’t going to climb An’Teallach again, the fact that he has that aspiration is part of his “being”, just as it is yours. Blah. I hope you know what I mean.

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  41. As I’m sure you don’t need me to tell you, tragedy is only comedy viewed close up. I’m not saying there’s anything inherently funny to outsiders about your situation, but that once you have the perspective of time, you’re likely to find some of these, admittedly infuriating, reactions funny.

    My husband and I are still delighted by the phone call I got from his boss after he’d visited him in intensive care. My husband was conscious, breathing for himself and sitting up. A marked improvement from how he’d been for the last 4 weeks, when I’d visited daily, through morning sickness of early pregnancy and one of our kids going to hospital too. The boss had to call me up to be debriefed from the trauma of his hospital visit ‘because only i would understand’.

    At the time, I was both furious and desperately upset. With the benefit of hindsight, I think this total insensitivity is hilarious.

    I really hope your recovery continues apace, and you do manage your hills. I’m walking vicariously through you!
    Kate

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  42. Your brain is an amazing thing. You will, with perserverance, be able to do most anything. You may not do it how you used to or how I do it or your neighbor does it … that doesn’t make your way wrong that just makes your way different. And maybe even your way will be the better way … like finding a better way to knit something after years of everyone doing the “right way” only to discover that your take on it works better. Hang in there … you are going to excel at your life. We are all a work in progress.

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  43. What is it about opera audiences? About 18 months ago I won a family ticket to see La Boheme at a family performance at Covent Garden. My kids behaved better than I have ever seen them but still (and even though it was billed as a performance for children and their families) people were snooty.

    Thought of you yesterday as I was reading Keith Thomas’s ‘The Ends of Life’ and particularly when reading about Margaret Cavendish, Duchess of Newcastle and her delight in her singular fashions. I’m sure you know the source material for all of this well, but for a non specialist reader like me Thomas is a great read.

    I have a favoured quote for when times demand it. In the words of the former Australian PM Gough Whitlam I think it is important to ‘Maintain your rage’.

    Best wishes, Joan

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  44. I’m glad that you can share your insider’s view so that we can all appreciate the journey you’re on. I wonder if people’s reactions are culturally driven, with the populous of Blighty being typically, er, British in their reactions?

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  45. Oh dear, those poor cabbies (who are scared by the thought of strokes, and their own mortality – while they smoke their fags and don’t exercise, possibly!) and poor you! Yep, some people are shite, and have their own agendas, ie angels etc. My experience of getting a blue badge and the automatic car, that is a life-line, was shock and embarrassment at others’ reactions of, well, snooty-ness, for one! So, I keep it quiet and enjoy my car, and less pain at not having to walk so far back to the car park.
    It does take time to adjust to the new you – because that’s what it is. You are the ‘old’ you, but with added attributes. Time will get you into the new routines, habits and abilities. And, you are doing everything in your own power to access that.
    btw, I loved your piece about ‘Sleep is an Activity’. I hope you don’t mind, but I copied it out and sent it to my mum, who is ill with heart problems and pneumonia – to demonstrate the healing powers of said rest. xx

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  46. Kate,

    thank you so much for sharing your thoughts with us – i love how you are thinking (!!) about what is going on, and not just letting it happen to you and being swallowed up by it.

    i echo the thoughts of others – i am glad you know that your script is not a tragic one, and I am glad that you can share that with us here. I eagerly await each new post, to see what difficulties you have overcome (or are still struggling with), and what triumphs you have to share with us.

    good luck with the seven hills! Supposedly Seattle is built on 7 hills as well (just like Rome! it must have been the thing, back in the day)

    another echo – is there a po box where a person could send you something? i meant to drop you a note while you were in the hospital, but the combination of lack of motivation +procrastination meant i did not. boo. but i still would like to send something along.

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  47. While you certainly have quite a trying situation (and seem to be dealing with it beautifully), I think that people/society/whomever have a script for most people that can really affect one’s decisions. Some seem to rebel so much against the script that they hurt themselves in the process and end up not doing what they really wanted to and some people just fall into the script. It can be a self-fulfilling prophesy or a prison sentence, but it’s not written for you.

    I love reading your blog and I do hope my comments aren’t entirely idiotic. Your posts get me thinking in new ways and prompts a bit of a rant!

    So glad you’re doing well.

    P.S. I read about a knitting festival near to Glasgow (I think). Is that near you? It’s the UK knit camp 2010.

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  48. Kate, I love the way you see things – I am always intrigued by your view. And I’m certainly glad you don’t see yourself as a tragic figure. When the people one admires see themselves as tragic, it bodes ill for one’s own aspirations. :-)

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  49. We all need a good kvetch now and again, and you certainly deserve to do it. If we don’t complain about our limitations and always put on that cheery smile, we are not real, especially to ourselves. The fact is, we do and will get angry about our limitations and the frustrations they bring. To lie about it just prolongs the frustration. In fact, when you are angry or frustrated or sad about something, it sometimes is just the best thing in the world to just give into self-pity and wallow in it. And then it becomes increasingly funny – at least it does for me.

    And people can be just incredible stupid and thoughtless. And frightened by anyone who is disabled – in a wheelchair, with a brace, missing a leg or arm. Quite honestly, sometimes I’m too inquisitive about people’s disabilities – mine is rather well hidden – but a lot of times it just gets people talking who need to talk, or want to talk.

    Altogether, Kate, you are doing incredibly well, no matter what the limitations you have, and may continue to have, because you simply will not say you cannot do something. I admire your spirit, love your insights and vents, and also know that you will succeed no matter what. Keep it up. You are quite a gal, and a gift of insight and hope to many.

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  50. Hey Kate
    I see you heading up those Seven Hills of Edinburgh, your words floating around behind and above you pulling and pushing you forward and up up up.

    Lydia

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  51. I came for the knitting and now you’ve got me thinking…

    Your writing is beautiful no matter the subject. I can only wish you the best in your journey forward.

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  52. Kate it is always a pleasure to read your eloquent words. Humans are a strange breed and so varied in their reactions to unknown events. Mostly I believe that they are reacting to the effect a stroke in their 30’s would have had on their life and they do not have your level of determination and resilience to overcome such a hurdle. You on the other hand are moving onward and upward with your usual grace and intelligence. Keep going girl.
    One of my sons friends was hit by a car when he was 12. The doctors removed the top of his scull to allow the brain to swell and prevent death. When they were ready to replace the scull bone he asked them to take some photos of his brain. These with the scan images proved a fantastic show and tell item at school and now he is one of the few teenage boys that has proof that he has a brain! It has been fascinating to watch his recovery over the years and to see how you can teach the brain to reroute tasks and work round the damaged areas.

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  53. A similar thing happened to me when I lost a baby to a birth defect. I spent a lot of time comforting other people. Dealing with their fear and grief was often very exhausting, especially since I was dealing with my own pain. People just don’t know what to say. I’m sorry you’ve run into people who have let fear overrule their sense of kindness and compassion. I’m sure you have much in life still to look forward to and I am grateful for your courage in sharing this experience.

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  54. I’ve been reading your blog for a long time now (love your knitting, your walks, your sense of style, and of course, Jesus :-), but have never left a comment before now. This post really hit home. My children have a mysterious bone condition that presents itself as osteoporosis. They have each suffered numerous fractures of the spine and legs. It amazes me that whenever I have to explain their condition to someone, that person will invariably counsel me to provide them with more calcium and vitamin D. Gee, now why hadn’t their doctors or I thought of that??? But, worse, that person immediately sees my children differently…as damaged goods, as “tragedies”. My children are bright, funny, attractive, kind, and FULL of life. Yes, their health issues can be a real pain for them, but they do not need or want pity, only understanding and perhaps friendship.

    Just yesterday my daughter Emmeline was doing a word scramble puzzle of the States. The next state on her list began with a V and had A R N I G A I in it. She looked at it for a moment and exclaimed, “Oh, I think I know it! It’s Viagra Falls!” Not quite, dear. Okay, so maybe they’re not the brightest children, but they are certainly funny! ;-)

    I look forward to many more vicarious walks with you, and knitting, and stories from your vibrant life. We are, all of us, un-scripted.

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  55. Thought of you the other day while visiting the William Morris museum in Walthamstow. It was his satchel, battered and worn from his travels and trying to change the world, that did it. Kate Davies has a satchel, a very lovely red one, I thought.

    Looking forward to hearing about your ascensions (and the glorious kips that will follow).

    C

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  56. I have every confidence that you will continue to write your *own* script. And I’m pleased to report that I have all the materials for a Dollheid, which will be started before too long.

    Best wishes.

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  57. I regularly read your wise and thoughtful words with interest and delight. I have always thought there were enough comments in general on ‘the web’ that I did not need to add my own ‘two penn’orth’. However, though your observations always strike home, they are particularly resonnant on this anniversary of my brother’s death; where I am acutely reminded that one of the many difficult things to deal with in a sudden and unexpected emotional situation is how often YOU are having to comfort everyone else and deal with their inabilities to comprehend or to know how to react to you. I simply got very tired of being strong for everybody else. My few feeble words only add to the admiration of many for the strength you show by carrying on with determination and energy in the face of adversity. It truly is the only way. One day at a time; and always ‘have a glass half full’. Make time for yourself; and never give in. All the very best to you and yours.

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  58. I try to NOT write about my being sick on my blogspot. I relish that you can! LOve, loVe, love to listen to your strength, the strength in your words.

    Keep writing . . . we are listening!!!

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  59. No one knows what the future has in store for them. Perhaps that’s what makes life so interesting if we want to look at it that way. I’m sure you will continue to write your own script though and relish it, even if it’s not quite the way you thought it would be.

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  60. Ah you are on form here, good to hear the drive. Don’t take this as a ‘be grateful for what you have’ comment but the real tragedy would be dying at 36, for you, Tom and everyone else. Very glad you’re still with us. You are a brilliant, amazing person, your intelligence and breadth of learning and reading amaze me, and you are 3 years younger than me!

    Did you hear In Touch this evening? Now there was a story about dealing with people’s perceptions and disability. A lady from Australia was basically blind but her parents decided to bring her up as if sighted (I think this was the 50s). So she got by, never used a stick, mainly moved by sound and vague shapes and light. Amazingly enough she moved to England in her 30s and still did not admit to being blind. Then she was found out by her dentist who was blunt with her – he said that without a stick she looked ‘shifty’. I have no idea as to what use this story is for you, probably none at all, but it certainly illustrated for me the lengths people do go to to feel ‘normal’ or not be noticed. And that reminds me good of old Viv Stanshall (‘we are normal, we want our freedom, we are normal, we dig Bert Weedon’) and… I need to go to bed, goodnight!

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  61. Sorry to hear how thoughtless people are. If it’s any consolation they might well have gone home and thought “I cannot BELIEVE I said that”.

    Glad to read about your new goals – impressed that that is your response to a tough week!

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  62. I think Jen has just said it for me!

    You are not the you that you see reflected back to you, the scripts are theirs not yours. And this much I have learned – the things people say about you reveal everything about them and add nothing to your knowledge of yourself.

    But it’s hard to know what to say sometimes and we mere mortals are so prone to putting our foot in it, though I don’t wish to defend anything you have encountered. And as someone else suggested, there is a book in this – maybe with a chapter on “what not to say”!

    Good luck with your mountains – I feel sure you will conquer them. And thank you for writing so eloquently about your situation.

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  63. I had not heard before that Edinburgh has seven hills. I come from Sheffield, which is also very hilly and we were always told (especially by our Latin teacher) that it is built on seven hills just like Rome, though I have never tried to count them. Lisbon too is said to have seven hills. I suspect that if Rome had eight hills, the others would too. (What you count as a hill must be fairly subjective, I think.) Good luck climbing Mead Mountain (is that Arthur’s Seat?) Will there be mead?

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  64. Afterthought : I did some dishes, and thought some more about you. I get to imagining that you might feel some kind of ‘end’ by what other stroke victims have shown as recovery, and that you might as well ~in all Kate-ness ~ make a contribution to neuroscience and the modern study of brain plasticity, by making yourself a record example of how fast and far one can rebound from stroke. What do you think? (I mean, what else are you going to do ? ;-)

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  65. From reading your blog the last two years I imagine that you would certainly not be the type to follow that script. With every post here you show that you’re writing your own story, so I hope you don’t feel like you have to recite the lines of some character people expect you to be.

    On another note (reading about neuroplasticity etc) you might enjoy this book which I read over Christmas – it tells the stories of people who have overcome huge challenges and proved that the brain can compensate in ways we don’t really understand well (biologically, at least!). It’s called ‘The Brain that Changes Itself’ by Norman Doige. (http://www.bookdepository.co.uk/book/9780141038872/The-Brain-That-Changes-Itself)
    As a neuroscientist, it is incredibly interesting and humbling to read your posts because as researchers, we so often forget the human side of the diseases we study and the people they affect. Thank you x

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  66. Kate ~You are Not that which other’s temporarily see, the injured, broken tragic girl of 36… no, you are so , so much more. You are Kate who is an extraordinary individual , an energetic, determined, perhaps feisty woman, who has hundreds or more admirers. You are Kate who climbs the mountains of the stunning countryside, so high up in the clouds, yes, one who walks in the clouds. You are Kate who has such a creative eye for flair and very capable nimble hands and feet to carry out your every whim. You must continue to visualize yourself as You Are… not as you temporarily are not.

    Perhaps just learn to smile and wave, as they say, to all of those who project on to you this apparent tragic woman, let them, for they do not know you, can not know you, will never know you. So how can you think of giving those who mean nothing, so much power as to push you into a broken down fragile being? Never !!! Who are they? You are *not* a maliable person, you are so forcefully you, and nothing or nobody else. I see you as Kate before, and Kate to be, and your life for the present is rather like having to walk through a wall, and physically disassemble yourself in order to get to the other side. Yes, you are on to it ~ neuroplasticity is the buzz word ~ and you can pretty much script how you want all those neural nets to go back together. From designing sweaters & dresses to something very complex as your neural pathways… no cakewalk (pun intended) … but doable in every aspect from my estimation. Something that can only happen with work, steadfast awareness and constant visualization. No budget needed for that !

    I think I have mentioned to you how you have become an example for so many who are perfectly able and capable to walk , say 2 miles, or 10 miles, or whatever, but who choose not to out of laziness and self-pity. I have struggled with my own psychological self-image obstacles, and now find myself rendered defenseless without obstacle or excuse, because hell, if Kate can survive this, then I berloody well must try ! I suppose I can say several of the hudred of your fans may feel similarly to myself. So, we’re cheering for you, yes, but as we cheer for ourselves at how burdensom life can be whether one has actual real obstacles, or only imagined. So, in closing, everyday I haul my arse up *my* mtn to try to get ever-so-little bit more in shape, I think of your windmill trek, and your gracefulness and determination. When you go down, we all go down with you, and that’s not an option. As long as you continue to pop in the fort here and talk, we’re as good as there.

    You can *do* Mead Mtn. In fact, I’d like to know the estimated time you plan on climbing, and will match you on my side of the world, every minute. I have only to gain thus, from your tenacity… and thank you ! ~xx Jen

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  67. I cannot abide pity. Drives me absolutely round the bend. Sympathy, compassion, empathy… those I have always welcomed.

    I hold out my hand to you, across a continent and an ocean. I can’t make any of this go away, but perhaps I can help you in some small way.

    Peace to you.

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  68. Others express the gratitude and admiration we feel for you so well that I comment here not because you need to hear what I feel, but simply because I need to tell you this: I believe that you are making all of us kinder and wiser. I will work to use this gift from you in your honor.
    Thank you.

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  69. From the get go, you have not struck me as either tragic or a victim, and, in time,I trust that any perceived or associated disability will fade with your determination. As we say in NY, “f..k ’em” and keep moving! You’re blessed to be 36 and smart as a whip!
    PH

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  70. Huzzah you posted! An interesting post, as always.It’s astonishing how ill-informed we are about common conditions and then try and fit people into our limited gaze.Stroke can happen at any age and it is the severity that creates impact.
    I hope you get good weather for your walk. Then again, if it rains, the High Street will be emptier!

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  71. Perhaps your cabbies are uncomfortable staring at their own potential morbidity? We are so used to ‘perfect’ that the ‘imperfect’, whatever it may be, is quite scary. All the more if we think that perhaps, maybe, it could also happen to ‘us’. I think today’s society has a lot to answer for in expectations of ‘normal’ and ‘healthy’. We hide our weaknesses and imperfections to such an extent that when shown an alternative reality I think people have a tendency to deflect it back – “oh I’m so sorry this happened to you”, when in fact their thinking “wow! that could be me.” The result is misguided pity.

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  72. i look forward to reading your thoughts about your stroke, your healing, your being out and in public and disabled. that same thinking that i read when you wrote about the attack on your tent is now reaching for meaning and understanding about this “attack” on your health. you are one tough, determined, and yes, remarkable woman.

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  73. I’ll tell you what, Kate – you are certainly making sure that those of us who are not very well informed about strokes are learning one heck of a lot. I hope your script will, eventually, include writing a book about all this because I think you’ve got stuff to say that a LOT of people need to hear. And you say it all so elegantly too! I love your new goal and will be cheering you on across cyberspace and eagerly awaiting your updates, as I always do.

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  74. I know it’s probably tiresome to hear this again and again, but thank you for expressing it all so well. The script is frustrating, no doubt, and it can come about in so many ways. People misread the nature of the complaint and pick up only on the disability and they’ve raced away on their own thoughts while you’re still trying to get in the door. It’s not something people can entirely help, but it’s very disconcerting to be the focus of pitying attention. Many hugs and well wishes to you.

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  75. Thank you for another fascinating and thought-provoking post. And I wish you good weather and minimal crowds for your hill walks, and I hope you’ll tell us all about them soon!

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  76. The person with the angels needs to be fired, bloody, bloody cheek. Perhaps you could start thinking about strange and exotic reasons when asked by taxi drivers and have some fun with them. After all its none of their business.

    You are you and the way you are dealing with this is amazing. But don’t forget it is totally okay to get angry and cranky and bloody minded particularly if people are being total prats.

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  77. Thanks for another fantastic post, Kate.

    I was in Blackpool last weekend too. It’s just as well I didn’t see you as I would have gushed and embarrassed us both (but mainly myself).

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  78. Kate,
    You continue to write with such grace and clarity and it is such an education to read your posts. It reminds me of the Henri Nouwen quote: “That which is most personal is most universal.” By revealing your experiences and emotions so clearly and openly, you touch us all.

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  79. Kate, I think the thing I love most about your blog is that, no matter what the subject, I learn something new, or am presented with a viewpoint I hadn’t considered before. Came for the knitting, stayed for the inspiration, as they say. Although I know the knitting may be on hold for a wee while yet, I am still excited whenever I see the blog has been updated, and always leave with lots to think about. Thank you for sharing your thoughts and experiences with us, and the very best of luck battling through the tourists to conquer Edinburgh’s hills!

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  80. Though I’ve never been in the same position as you are right now, I can relate to this post in some way. My father died when I was twenty, and possibly the hardest bit to deal with, even years later, is telling other people. I try to avoid it, and when I eventually tell them (when I run into a friend I haven’t seen since high school and they ask for my dad, when, I kid you not, the inn-keeper at my wedding rehearsal dinner asks in front of the whole crowd for me to point out my dad so he can sing a song to him), I never know what to do. I end up acting like it’s not a big deal, though it is, because people’s reactions freak me out: they cry, they change the subject, etc. I can’t stand, most of all, the, “Oh, you poor thing” cries. Yes ,I was young, but there are plenty whose parents died younger. I knew him for twenty years, which I consider a blessing.

    What makes my frustration worse for me is always that I feel badly for these people; I know that the situation isn’t one they expect, and I know they’re shocked and don’t say the right thing, or just don’t know what to say. I’ve made them uncomfortable and end up feeling guilty about that when, in fact, I’m the one who lost her dad. Blurgh.

    Anyhoo, yes. I sort of know where you’re coming from, though our experiences are often quite different. I’m thinking of you, and I hope you’re feeling better next week.

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    1. How strange – my Dad died when I was 20 as well, and this article reminded me of people’s reactions too. I now avoid telling people as much as possible because I don’t want this to be the thing that defines my life. But I’ve come to think that people aren’t necessarily sympathising with me; it’s more a reminder that bad things can happen to them too. Their Dad (or someone close to them) could die as well.

      Kate, I wonder if people’s reaction to your stroke is in part because it reminds them that they aren’t as safe as they think they are. If a young, active woman can suffer from a stroke, then so can they. And you certainly don’t come across as a victim here.

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  81. Oh what to write. I know that when I first read about your stroke, I did think “How Tragic”. Mostly because you are so talented and I thought it unfair that you would most likely have to relearn how to do your handwork again.

    My sister Kathy is battling breast cancer. She is my third sister to get cancer out of four! ~ I am weary and angry of people I care about having to fight so hard to survive, to maintain their lives… Off topic I went. Your stroke came soon after her cancer diagnosis.

    I’ve been wishing for quite a few years that our bodies could be less dense, so we could see what was going on in there… Sometimes too much mystery.

    Oh you have no idea what you have taught us here on your little blog.

    Not tragic ~ but an absolute heroine.

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  82. I greatly dislike it when people force their own world limitations on me – and that’s just about weight and travelling alone, i can’t imagine living with them fussing and fretting about something physical!

    I am imagining you walking up the hill to the Castle – I did that hike a few years ago when I visited Edinburgh, and yes, dodging knots of tourists (I was one myself, so i can’t complain too much about them!). I loved all the walking I did in Edinburgh, especially when it rained and most people got off the streets.

    What I really enjoyed was walking along in Princes Street Gardens and reading all the brass plates on the benches. I took photos of many of them so I could remember that lovely summer day. I am happy to be able to visualize where you’ll be for the next seven weekends.

    CHARGE!

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  83. Just occurred to me that my comment of “my injury was not as severe as yours” could be taken not as i intended. All i meant was that I was not trying to compare the two, as they are very different.

    People’s scripts can be hilarious, though, also. I remember someone telling me that they thought my mom thought she was hot stuff because she swayed her hips when she walked. The truth is, she had polio as a toddler and has limped all her life.

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  84. I my view, it’s an unbelievable annoyance, that’s what it is. As Kim above states, one may find herself in such a situation for reasons that have nothing to do with one’s health but which drive others to see us as ‘the other’. I have a similar problem as I speak with a hybrid accent, neither local (Mancunian), nor from any of the countries where I lived when I was much younger. I kid you not, every single taxi journey I’ve had to endure for years and years when I was working as a consultant was my own personal Groundhog Day, having to go through the same frigging questions, even in the same frigging order, over and over and over.

    I guess one’s own identity is a precious thing to ourSELVES; but then it gets perceived, manipulated and eventually hijacked for us by the stereotype that others are latching on so that they can identify us as something they think they can recognise and pigeonhole, whether it’s your speech that supposedly defines you or the tragedy of a stroke (sheesh!!!). I’ve got no words of comfort other than to say, paradoxically speaking and, please believe me, I am not trying to trivialise your situation, that I know what you’re going through even if from a different angle. *blah*!

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  85. 10 years ago after a wonderful holiday hiking/tramping about Scotland,(and sleeping through a trans-Atlantic flight) at the age of 36 I had a stroke. Fortunately it was much less severe, because it took them 3 days to even figure out that what was wrong was a stroke. Physically there was more pain/damage caused by the testing than the actual stroke itself.

    I only missed a couple of weeks of work mainly waiting for the wounds from the angio to heal and for the doctors to return my car keys than anything else. But I remember how people suddenly treated me very differently and how annoying that was. Almost as frustrating as the sudden limits the doctors imposed on my activities. They told me at the time that I was the only patient they had ever released with instructions to be LESS active. But after recovery the biggest change was that hormonal birth control or treatments were no longer allowed and even my family doctor forgot about it after several years.

    You will get better. Life will return to something approaching normal. But there are some long term changes that you will have to remember and accommodate. Turning 40 will actually be something to celebrate when you’ve seen the alternative.

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  86. Another fascinating post. I must admit I had my attitude to disabled people shaken up when my friends had a little girl with various disabilities, I think the inclusion of disabled people in mainstream culture is still pretty tokenistic and we remain ignorant as a result, whether we’re rude and ignorant or are so sympathetic that we’re patronising.

    The Royal Mile has quietened down a little after the easter holidays so there might not be as many tourists to battle with.

    Oh, and I was about to send you a card in hospital but you went home, which is far better!

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  87. I love reading your posts, because you offer such an interesting view of your situation.

    Can you actually understand your MRIs? I ask because I’m in the process of being diagnosed with something…the something is unknown yet, but could perhaps be multiple sclerosis; I’ve been informed that I have an abnormal brain. I wish I could read my MRIs; what about them is abnormal? All I see is a freaky alien-looking face staring back at me, and I am frustrated with my inability to comprehend what I am looking at. Would anything you read help me to be able to understand what the heck I’m looking at?

    Thanks!

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  88. Dear Kate,
    How you surprise at every turn! Although you must tire, from here you appear to be writing an entirely new script. And it is one that has your readers so captivated they look forward to hearing from you all week. It seems to me your script is challenging, rewarding, thought provoking, and full of what gives life depth and context.

    Last week I started reading “The Brain that Changes Itself” to try and understand a little bit about neuroplasticity and what you may be experiencing. If you have any suggested readings, I’d be very happy to hear.

    This week I would like to finally put pen to paper and mail you a wee note. Is there a PO Box I could send correspondence to? Also, do you have any particular hankerings from Philly? There must be something you’d like from Philly that one can’t order online! (I was so sorry not to get to meet you when you were here months ago.)

    In the mean time, I am reminded of a card a very close friend mailed me years ago. It is a normal 4×5”-ish size, all white, except at the very bottom right hand corner, in small bright red font it reads simply “Other people ruin everything”. It has been almost 10 years since I received that card in the mail and I still think of it and laugh. I hope it gives you a chuckle too.

    You are quite the inspiration.
    m.

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  89. I second Allie’s comment.

    I broke my fibula a few weeks ago and ended up having to have surgery on it last week, minor compared to your injury, but it has really struck me since how many people are very pessimistic. “Oh, I am so sorry this happened to you… it will probably be okay… ” (imagine this being said by Eeyore to get the full deflating effect), or “You’ll never have the same use of ankle again” (from someone who turned their ankle), and so on. Seriously, it is sucking with the crutches (American crutches are awful) and pain and swelling, but I am healing and holy cow i find that pretty fantastic. The human body is amazing.

    In short, I have no patience for these doom-sayers at the moment. And to your tragic script writers i say, “Pfft!”; They need new editors.

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  90. Hi Kate

    I think people make uninformed assumptions all the time. And say dreadful things without realising the impact it will have on the person they’re saying it to. When I was in a certain medical situation a few years ago I dealt with other people’s OPINIONS and prejudices by shutting down and letting it wash over me. I didn’t engage or react, I just moved on. I’m not advocating this approach – each person has to find their own way of dealing with stuff. It worked for me.

    So, I wish you continued improvement. Your hair looks lovely in the photo!

    Paula

    x x x

    Like

  91. I feel so lucky to be able to read your blog.
    You make me see life VERY clearly.
    You are a beautiful person.
    BEST WISHES
    Yaena

    Like

  92. while i’m not exactly a christian, this prayer from the BCP has helped me countless times.

    In the Morning

    This is another day, O Lord. I know not what it will bring forth, but make me ready, Lord, for whatever it may be. If I am to stand up, help me to stand bravely. If I am to sit still, help me to sit quietly. If I am to lie low, help me to do it
    patiently. And if I am to do nothing, let me do it gallantly.

    Make these words more than words, and give me the Spirit of Jesus. Amen.

    xxx

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  93. Deep breath. May I share a poem I wrote when friends were being annoying in their pity:

    I don’t need your pity.
    I don’t need your “isn’t it a shame”s.
    I don’t NEED a damn thing!

    Ok,
    A lie.

    I need oxygen,
    I need water and food.
    THERE endeth my needs!

    Just like everyone in this world
    I have MY life.
    I did not choose to get ill,
    I cannot choose to get well.

    I AM.

    To sit and dream of
    “What ifs”
    and
    “Whens”
    Would mean that life would pass me by.

    ACCEPTANCE
    Is where I’m at-
    Join me if you like me,
    But leave the pity at the door!

    In a well year I remember sitting on some steps in a pub, when I was joined by a guy. We got chatting, turns out he had a false leg and was resting like me. He usually told people he’d lost it in a shark attack or motorbike accident as people could deal with that better than the reality (I forget what that was). I also know people who feign ignorance when asked what they’ve “done”. Replies such as “I don’t know what you mean.” or “Have I spilt coffee all over myself?” Each to their own. I like sticking to the truth, as frustrating as it often is.

    shutting up.

    Like

  94. How to define your own life, who you are without accepting the definitions of others, and be original about it. Not easy for most, but I am sure you will do just that friend Kate.
    Virginia

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  95. Hi Kate – sometimes my students ask me what the point of studying literature is, and before reading your blog I would not have thought to answer “so that when something surprising/unsettling/disturbing/(but not tragic!) happens to you, you will have the critical tools to analyse both yourself and the world around you, and the language to articulate your experience so that others can understand it.” You are wonderfully eloquent. Deviating from “the script” is exciting and scary – for everyone. Hang in there!

    Sorry that opening sentence sounds so ponderous – I’m marking papers right now and my own language skills are suffering!

    Like

  96. People are often misguided in their attempts to comfort or connect. The upside is that their varied reactions are because they care, in their own strange little ways. I wish nothing but the best for you, and hope that you will continue to heal and show the world how it should be done!

    Like

  97. My brother-in-law (42) had a retinal stroke 3 weeks ago due to a patent-foramen-ovale (PFO) which is a small hole between the left and right venticles of the heart which allowed a clot to escape. In his case, while still quite frightening, the effect of the stroke was limited to minimal damage to his sight in one eye. He will likely have surgery in the coming weeks to repair the hole and is expected to be good as new. I’ve noticed that when I mention it to people there does seem to be that sense of horror and tragedy. In his case, he doesn’t feel tragic either. There are moments that he actually feels quite lucky that they were able to catch the PFO and repair it without his having had either a major stroke or worse. Still it is quite a shock and doesn’t gibe with our assumption of who is likely to sustain a stroke. Like a previous poster said, I know you will write your own script too.

    Like

  98. wow Kate
    I think you have hit the level of the healing process and I am sure that some smarter person than I will even have a name to put on it. but the young woman that you talked to while waiting for your therapy to begin was right-there are well meaning people who will give you advice or tell you that god is testing you or that you must have sinned or even- have you tried this because their aunt joan or friend bob took this pill or did this exercise and it was miraculous. and sometimes be rude in their impatience to get to where they are going.
    I don’t think it is because they are mean but it is because we don’t know how to react. i have had all kinds of hurtful comments made to me by well meaning people about my heath issues and all i could do was keep working at getting better and learn to accept the new me.
    knowing you only through reading your blog I am sure that you are doing just that. and I impressed by the walks and strides that you have made daily.
    keep it up

    Like

  99. The brain is an amazing thing! I can tell you are still yourself, even though you are dealing with something new and hard…. Your potential has NOT been cut short. You just have a steep hill to climb in the meantime!!

    Like

  100. Quite an interesting entry, Kate–I, too, am someone who at times finds myself frustrated upon having to deal with the perceptions (or expectations) that others place upon me based on the very little information they know. In my case it has nothing to do with a disability, but rather is due to my living outside of my cultural context (as an American living in Spain, most people can look at me and automatically know I am not from here). At the least, it is an experience that probably speaks to our condition as human beings, and the categories we create and the assumptions we make, sometimes without even realizing it; at any rate, best of luck dealing with all of it as your recovery continues. I’m glad to hear you have more walking goals, and I look forward to hearing of your successes in hill-climbing (and seeing pictures of the stunning countryside!).

    Like

  101. Dear Kate,
    Once again, you have done a fabulous job of expressing what you are experiencing and describing your reactions to these encounters. Would that I were that articulate! Your insights allow us to see very clearly how those with a handicap are forced into a role by the reactions of others. Not you. You are strong, you are brave, you are way smarter than the average bear…and you are in control of the script.

    Bearing in mind that the bulk of the reactions that irk you are born of fear, you could try quipping something like: “It’s not contagious!” or “I still plan to climb…(insert the name of a favorite peak)”. If you let people know, in no uncertain terms, that you in no way intend to subscribe to their ‘tragic’ script, perhaps they will back off. Or not. There is always the eejit factor.

    Thank you for another wonderful post.

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  102. Your posts are a highlight of my week. I enjoy them so very much! Thank you.

    By the way, I know two people in your age group who have suffered strokes. It still shocks me, but I think mainly because of what recovery entails. I hope yours continues to go well.

    Like

  103. I am pulling for you – I know you will write your own script. I am also certain that your script will be filled with many adventures and great joy – not to mention hill conquering!

    Like

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