. . . AN UMBRELLA!

Happily, everything went very smoothly on Wednesday. But there were a few surprises: for example, I was not anticipating being fully awake during the procedure – I had thought they would dope me up with some of the loopy juice they gave me during the trans-esophageal examination – which left me drowsy and unable to remember a thing about what was going on. But because they needed me to be awake (in case my efforts were needed to cough the umbrella into place, apparently) the most they could fire me up with was some stuff with an effect not unlike that of GIN, which I suppose was pleasant enough . . . and to be honest, the worst thing about the whole experience was the waiting around beforehand. It was admittedly a wee bit weird being fully compos mentis while they cut me up and shoved an umbrella up my groin, but once it was in place I felt almost immediately better. I was aware of it going in, and I am still a little aware of it now (palpitations &c while my heart gets used to its new room-mate) but the relief really is TREMENDOUS.


(I did think of O! Lucky Man a couple of times, but then I do in most situations. . .My cardiologist is clearly some sort of genius, but thankfully not of the Graham Crowden variety. )

The umbrella is really more like a gauzy trellis, around which tissue will grow. In a few weeks, the hole in my heart will hopefully be fully closed – no more escaping clots and no more strokes! And the fact that there is no ‘bad’ blood passing through from one side of the heart to the other may also mean that I suffer fewer migraines, and generally have more energy. BONUS!

Now the op is over, I feel I can start looking forward. And frankly, July is a month I will be very pleased to see the back of. Pat J left a very astute comment on one of my recent ranty postings: “all this sadness, anger, and frustration is part of the normal course of recovery. . . you were too sick months ago to broach any of this.” Like so many of your comments, this one of Pat’s helped me tremendously: she really put her finger on what has been amiss here of late.


(nimble weasel)

At the beginning of the rehabilitation process, I was just too sick to think about anything at all apart from trying, trying, trying to get well again. I wasn’t bored, because I was thinking about getting well. I wasn’t worrying about the future, because I was trying to get well. I wasn’t depressed, because my efforts were paying off – I was regaining mobility and function; I was getting well. Then, a few months into the process, my recovery started to plateau. The improvements that I saw seemed far less dramatic; I was no longer seriously ill, yet I still had significant mobility problems, evil fatigue, and the immense frustration of not being able to do very much at all apart from knit, and limp around the park. At this point, one begins to realise how very different one’s life is now to how it once was: where before you were lithe and nifty and nimble like the weasel, now you are ungainly and wonky and slow like the loris. And at the same time, everyone just keeps on telling you how amazingly well you are doing; how much better you are than so many other people in comparable situations; how much worse things could have been; how very lucky you are. But you do not feel lucky at all. You feel like shite.


(slow loris)

Then therapists and medics begin to use phrases like “high level” in reference to your abilities and function. On the one hand, to a snippy, academic sort of person like myself, this feels rather patronising (you have deemed my “level” as “high”: gee thanks!) And on the other, it only serves to reinforce the disjunction between their perception of the situation and yours: to them, used to dealing with folk with MND and other appalling conditions on a daily basis, your “level” may indeed seem “high,” but to you, who are dreaming of the wonderful walks in the hills that you are missing; the books that you wish you were reading; let alone the cup of tea you might be drinking if you could just get up and make your way to the kitchen, your “level” is woefully “low”. All these comparisons with other patients, other people, other conditions, have a very weird effect on one’s state of mind: you begin to feel guilty for not being more ill than you are, and you have the sensation of being very alone in your own skin: you are the only person who knows how crap things really are.

Then things start to get unpleasant. You start to get really angry. To every positive remark, there is a retort that will remind your interlocutor that it is you not them that is going through this: that they don’t know jack about how things are for you.

Therapist: “You are doing great” ”
Me: “um, no, just look at the state of me. For I am lame.”

Therapist: “I can hardly tell which foot is the bad one ”
Me: “are you fookin joking? Have you any idea how much effort is involved for me to make a single step? What it has taken for me to get to this point? How tired I feel even after a short walk?”

But these people do have some idea, because they have been with you every step of the way, and yet, the bottom line is that they see you as a patient-who-is-much-better-than-other-patients, while you see yourself as someone who is unrecognisable from the person you were before.

The day after I had the stroke, a neurologist handed me a leaflet which described the process of recovery from stroke being similar to some stages of bereavement. I was puzzled by this at the time, but now I think I understand. The anger one feels at the loss of the pre-stroke self is certainly comparable. Those who have lost someone who died young or unexpectedly – someone who shouldn’t have died in other words – will know what I mean: there is a point at which your grief and anger at death is so great that you turn totally evil and misanthropic. You are reading a newspaper and find yourself thinking, why is she dead, when Norman Tebbit is alive? Or you are shopping in a supermarket, and find that you regard your fellow human beings as inane farting skittles, pootling around, just buying their snacks regardless when all the time she is dead. Something similar happened to me a few weeks ago at IKEA (to me, another name for hell) which made me realise that the process of coming to terms with the loss of my pre-stroke self is very like bereavement. We had gone to buy some picture frames, and that day, I was feeling more than usually wonky, and really, really angry about simply having had a stroke. I struggled around the store and when we finally got outside, I confess I found myself looking at a group of overweight and unhealthy-looking blokes gathered around an ashtray at the gateway to the ‘marketplace’ with something akin to hatred. I found myself thinking “those fat smokers should have had a stroke. Why did I have a stroke and not them?” Now, thankfully, these are not the sort of thoughts I usually have. I am not an angry sort of person; any misanthropy I have is the result of shyness or social discomfort, and if other folk want to ruin their health with nicotine and pringles it is really none of my business. I am totally appalled at myself for even having such thoughts, and it has taken quite a bit for me to tell you about them – but it is important that I do tell you, because I reckon it was the worst place I’ve been to in the past six months – the lowest and most angry I’ve been. Those blokes do not “deserve” to have a stroke. No one deserves to have a stroke. But there comes a point when one is raw and angry at the stroke, and one is grieving for the pre-stroke self, when you do start to think that someone else must deserve this more than you.

It has really taken me most of the past month to work through this evil, angry crap; to be able to look at pictures of my nice, healthy, pre-stroke legs without getting annoyed or upset by them;or to realise that I really am doing well, that I am still me, and am actually going to be just fine – just a wee a bit different, physically. I think that having the heart umbrella in place will really help as one of its (psychological) effects is that I suddenly feel like an all-new-super-cyborg me, with magical stroke-free powers. Writing about it here helps too, because I know that so many of you completely understand this stuff, and your kind and supportive messages always keep me on track. I also imagine that exercise of the slightly more strenuous variety (for which read HILLS) is going to be incredibly restorative. But really, what helps me most of all is TOM, who has, with total equanimity, and the regular provision of delicious cakes, put up with the weird and sad and angry me over the past month. And anyway, who can be angry for long with a daft puppy in the house? Not the fixed-up, stroke-free, heart-whole me.

(obligatory Bruce-shot)

95 thoughts on “I got me . . .

  1. I just want to say I love reading your blog. I know some of how you feel having been gravely ill and now almost three years later I’m still in the process of recovering. What you say about bereavement for the person you were before the illness really struck a chord and I read this post with tears in my eyes. I like you used to hill walk and do all manner of crazy things now stairs cause me huge problems. I suppose what helps me is to remember that I’m still here and my heart still beats (despite the metal that’s in there).
    It’s hard and tough and unfair to be a young person who has been struck by illness. And it’s ok to get angry about that. You have been so strong so don’t be too hard on yourself if you get angry. I suffered a delayed reaction to all that happened to me. While I was in hospital all my energy was focused on getting well and getting out of there. It was only about a year later when the emotional impact of it all really hit me. I’m just rambling now I suppose but I just wanted to let you know you’re not alone. Your blog and progress have been such an inspiration to me.

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  2. You are doing very well…without any wish to sound patronising! Part of the whole recovery process is learning to accept that others’ judgements are often right, even if they don’t sound so to you. Stop being so hard on yourself for normal feelings and responses. I have not had a stroke, so I don’t have your experience of physical difficulties, but I have had to make recovery from a different blindsiding incident, the process of which, sounds incredibly close to what you are going through mentally. It took me an awful lot longer to process these thoughts and feelings than you seem to be doing. Life is definitely NOT fair, but give yourself credit for doing a damn good job of speeding the whole process up. Well done girl. It’s a long journey but you are showing yourself to be incredibly able. With your kind of attitude, life has only positives to offer after this awful experience.

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  3. Congratulations on the successful operation!!

    I think you are more upbeat, hopeful, and effective than most of the people I’ve encountered, so, it is no surprise that your feelings during the recovery have affected you so profoundly. It’s certainly OK to let go of any bad feelings, especially as a step toward further recovery.

    I always thought it a pity that life is just not fair. How much simpler that might make things. For me, it’s better to focus on more productive changes, and sometimes, it is the conscious effort to stay happy that works.

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  4. Oh, Kate! I’m so happy it went well!
    I love your ‘brella shot, and the Bruce shot, but mostly I just love reading you…have been there (those feelings on the table are odd, aren’t they?), that lovely knitted heart is similar to mine (tho’ I added something to show how mine was mended) and every step of this has made me remember my own trials 10 years ago. It does get better, it will.
    Thank you for allowing us all in to hear your progress and your challenges. You’re a very special voice!
    (((((hugs)))))

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  5. Thanks so much for sharing this with us. Very happy for you that the umbrella is in place now. Take care and very best wishes.

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  6. Congratulations on your new umbrella! Very glad to hear the procedure went well, and to see you taking to the hills again.
    ‘Obligatory Bruce-shots’ always welcome (He looks like a hound on a mission in this one :)

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  7. Dear Kate,
    I discovered your blog through your (get off my) Cloud Ravelry pattern and just spend the last hours continuously reading it. That’s what happens if one innocently thinks it wouldn’t hurt to be curious to find out what the person is like who writes those lovely knitting patterns… It turns out she writes a tremendously interesting blog as well!

    After living 15 years with chronic illness (having it wrongly diagnosed/ treated at the beginning and nearly dying of it in the process) I can relate to the feelings you go through after your stroke – as I went through them myself – despite my illness being a different one, the feelings going through something like this always seem to be the same.

    I’m pretty sure, I couldn’t have put them as eloquently into words while going through them at the time though! Personally, I had no idea on what ‘adventure’ I embarked when I fought back to life. Naively I thought I’d pick up life at the same spot – only same years later. But it doesn’t work out that way. One is not the same person any more, one is not in “the norm”, fitting in becomes impossible (as one has different requirements than “the norm”) and sticking out requires a lot of strength.
    It took me years to not only think that process through, but also accept/acting upon it as well.

    Part of this process was reading stories about people in similar situations and how they manage to go on. Thank you for being one of those inspiring people by sharing your thoughts and feeling on your blog. It might not feel much to you, but I’m sure it does to a lot of people who read you – and most of them won’t even have the courage to post a comment.

    And after all this waffling I still need to say: I’m very happy for you that the umbrella procedure went well!

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  8. Again, thanks for sharing your very personal thoughts. I’m a counselling psychologist, and having been allowed to share some of your journey will hopefully enable me to work better in the future. Thank you.

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  9. Thank you for those thoughts. I remember feeling that sort of anger after I went all the way through labor with my first child, only to need a Cesarean in the end because my daughter’s head and my pelvis were a bad fit. Why couldn’t my body do what it was flippin’ supposed to do?!? But then I had my second child the ol’ normal way, and surprise — that was more damaging than the Cesarean. So it was a planned Cesarean with the third, which was fine — it was just frustrating at those earlier times to be confronted with my body’s limitations.

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  10. It may not feel like these burdensome feelings will settle, but settle they will. Who knows when? Keep your [angry :)] chin up, my girl!

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  11. Your words really resonated with me today. I just got back from a wedding which I attended with a friend I had not seen for a few years. In the last year he was diagnosed with a re-occurrence of the cancer that he had beaten as a child. So while he was going through the surgery and treatment, his father got ill, and then died… of cancer. The last year has been terrible for him, and after talking about it, he looked me in the eye and said. “Life isn’t fair, but you just have to go on.” And then he remarked on how wonderful it was to see our mutual friend married, and that life has its joys too.

    So you go on. I appreciate your honesty- just like my friend’s honesty.

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  12. when i read your posts, and then i see the wonderful knit heart and then bruce, i know I KNOW you are healing, anger, laughter, all. you are a hero. indeed.

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  13. Now here’s a funny thing. How is it that someone whom you have never met, whom you know only through the post and postings, who opens their heart to you, and in return fills you with heartfelt wonder, makes you want to give them the biggest of hugs.

    But I’m British, so…ahem, Keep up the good work.

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  14. This is an amazing post and I love the honesty with which you have written about all the feelings in this complex territory.

    I think any major health crises *does* involve huge grief and anger for the pre-condition self. It’s difficult and hard, but you have to get through it, to feel it, to be furious and to have unreasonable feelings towards random strangers.

    …I think the consolations and problem-solving and acceptance all come later, and you can’t rush that really.

    I am so glad you have the consolation and healing of the heart umbrella; and it must be a great relief to know the hole is CLOSED!

    Most of all, I am happy at the thought of you and Tom getting some HILLS in soon!

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  15. Hi Kate,

    I’m pleased to hear the procedure went well and it’s lifted your spirits. Yay to that!

    I believe you’re allowed to feel angry, and you don’t need to account for yourself. Life stinks sometimes for some people. Unfortunately, it’s dealt you a nasty punch. Who wouldn’t wish it was someone else? Looking at it another way, how many people are thankful it isn’t them?

    You rage away, if that’s where you are, and how you feel. No one knows how it feels to be you right now, apart from you. It’s a natural reaction, so go for it!

    Give yourself time to feel your way emotionally through this. You’ve been through a lot. Half of this would have tested the patience of a saint!

    Have a good week, and take care,

    Cate x

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  16. Somewhere out there in the internet world, someone is reading your post and feeling much better about themselves. They’re feeling that it’s okay to be angry (at anything and everything), to be sad, to be depressed, to be despairing. Whoever that is, is also seeing you working toward recovering and working toward a decent emotional state. (Well, aren’t we all!) I think all of this will be more helpful to them than any brochure.

    I’m so glad you’re through with the umbrella, and I’m so glad you’re feeling better. I hope things get better and better for you.

    Jennie

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  17. You are so right to record your feelings – for yourself and others. It must be hard to be told you are ‘doing really well, etc etc etc’ when inside you are finding everything so heavy – you just want to put it all down for a minute and get a bit of respite from it all. Every one has an anecdote with which to empathise and sometimes it helps – but know one but you knows how you feel within your soul . Just lean on those who love you and take strength from them.

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  18. Dear Kate,
    I’ve said this before– you are a gem! You have so many gifts and such genius; we out here in blogland are fortunate to be on the receiving end of such gifts. Your cup is more than half-full.! Here’s to stronger, longer walks– with your pup and Tom; increased mobility and strength in your arms legs and whole person; inspired knitting and creative projects; lovely meals with friends and family; and general good living! Anger, channeled creatively, is good stuff.

    Thank you, and good luck!
    Kellychats.

    *How can one send a greeting to you?

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  19. Read about your illness with much sadness, but upon reading this, I am wildly cheered. Mazal Tov on your umbrella! May there soon be a day of walking in the Hills when this illness seems nothing but a hazy mirage below.

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  20. But the slow Loris is so cute… I’m going to be happy at being a cute slow Loris…
    So pleased you are feeling improvements immediately from the heart op. Onwards and upwards, albeit slowly.

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  21. Hooray for clever little umbrellas, I’m glad the procedure went well and that you’re now an amazing cyborg.

    I do understand about the anger and frustration: it’s tough being hampered by our misbehaving bodies. I was just swearing at my lunch because even though it was something simple, I was struggling to make it. I’ve had a chest infection on top of my usual ME/CFS and I’ve lost most of this week to unbearable fatigue and coughing.

    It IS frustrating and unfair and you do get so very tired of it. I often feel that I’m not doing too badly – there are people out there with far worse ME/CFS than me but really, that’s very little consolation when it’s MY art that’s not getting made and MY garden that’s descending into overgrown chaos.

    And now I have to go and lie down again because three hours is the maximum I can stay upright at the moment.

    Wishing you many better days, dear Kate.

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  22. Glad all went well! Also wanted to agree, as an acupuncturist (yes, I have several needle-related skills), that the way you articulate the interesting and tedious and enraging parts of your recovery is really helpful. I well know how frustrated patients feel during the “plateau” parts of recovering from an illness or injury (and often share it, to a degree, though I know I can’t fully enter their experience). It’s helpful to think that that frustration is often a sign of them feeling better; it seems like anger is very frequently a part of people healing from all kinds of things (as well as a part of living with things that will never “heal”). It’s hard as a healthcare provider to strike a balance between being encouraging on the one hand and, on the other, just validating the hard feelings that patients are having (as well as really hearing about the weakness, pain, etc.); in fact I think I often err on the side of NOT being encouraging, because I know when *I* feel like crap I want to have at least some space to just feel like crap–there are few things more infuriating than being told things like “you’re doing so well” or “it could be so much worse, you’re lucky!” The hard days are when all my patients seem to either be in a lot of pain (physical and emotional) and/or are plateauing and irritated: I just try to keep breathing, keep listening, not to shut down emotionally myself (or get overwhelmed), and get the needles in and get out of the way. I think at that certain points in recovery, mostly what the needles are doing for folks is taking the edge off of the frustration.

    Have you read Eli Clare at all? I just (finally) started “Exile and Pride”…also thought of your blogging about adaptive devices reading this short post: http://eliclare.com/life-in-general/snowshoes-as-adaptive-equipment? Not sure if snowshoes would work that way for you (or whether you would even need adaptive equipment by then), but, in addition to lovely knits, another potential reason to enjoy winter.

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  23. My Dear Kate

    I’ve always thought that being bloody angry is a pre-requisite for recovery from major trauma, whatever the cause of the trauma. And most of us have been conditioned to play nice, hold it in and be grateful. Ggggggggggrrrrrrrrrrrr!!!!!!!!!!!!!!!!!

    Huge cheers for letting it out, for allowing it to pop and spark rather than fester.

    (. . . and you are a leader, and this is your tribe . . . . )

    Tilla

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  24. Oh Kate. Thank you for your brave honesty. It is why I come back and keep up with you. I am so happy the umbrella is in, and everything went well. I am often one to want more for myself and now(!), and need to remind myself to remain grounded in both my own shoes. You are doing well, and I bet, better for the telling of both the bright and the shadow.
    I love seeing the photo of Bruce and his bowl.

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  25. (((Hugs)))

    You have every right to be angry. I have (touch wood) never been seriously ill, but I’ve seen someone close go through cancer and I’ve always imagined that it must be very anger making when it’s your body that’s made you I’ll as opposed to say catching TB, battling against a microbe and you’re battling against something else, not yourself as in a stroke or in cancer. Of course you didn’t do anything wrong, so you shouldn’t be angry but it is perfectly human that you are.

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  26. Dear Kate, so glad to hear that umbrella is fitted and fine.

    And I have to thank you again for your articulate words. I weep as I read your words about the anger at the loss. We lost a 4 year old daughter suddenly to an undetected immune deficiency almost 30 years ago…some days I still feel that anger. Our guinea pigs get lots of cuddles and lots fresh green stuff picked on my calming walk on those days. I’d love a Bruce but..GPs will do for now.
    Wishing you increasing strength and much fun.

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  27. I am thrilled that another big step has been taken. Sounds like the road has changed and a new landscape now surrounds you. Kate, all the awfulness we see inside us is surely part of our way of coping… thanks for being so brave enough to show yours.

    PS my heart felt squeezed when I saw your last photo… your little furry mate looks so keen to do his best to help!

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  28. Aren’t puppies amazing? My 12 week old puppy is teaching me more about the state of my own mind than I think I’ve ever known. It would be kinda scary if she weren’t so lovable.

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  29. Hello Kate,

    I am glad your procedure went well. You have been in my thoughts. My 8 year old daughter had a similar procedure on her heart, along with a few pacemaker surgeries.
    We both wear our Owl sweaters all the time. Wishing you a fast recovery!
    Cassie

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  30. Hi Kate
    I am dogsitting your little puppy’s twin on the other side of the world. He has just waylaid into the IKEA cushions and chewed the woolly tassle off. His name is Woody and I found him in the forest close to my house when he was just a tiny tiddler, hence the name. My son in law fell in love with him at first sight and Woody now lives up in Perth with his new and expanding family. He loves playing frisbee and walks and eating kangaroo poo, indeed any sort of poo at all!! So, I imagine you and Tom often share a happy laugh with your little beauty……. and your life is just that much changed for the better.
    Umbrellas are very handy too!
    Bye for now.
    Lydia

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  31. Yay for umbrellas! I would also be taken aback at being awake through the procedure. I imagine it is safer, though. All the best with your recovery.

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  32. Hi Kate,
    I’m very very happy the procedure went well and you are working through your recovery with your husband and new puppy in tow.

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  33. Dear Kate,

    So so pleased to hear about the sucess of your operation! It must indeed have been freaky weird to be awake during the procedure and I’m so glad it’s over and you can concentrate on continuing to heal. Hope Tom and Bruce continue to provide lots of comfort and cake in the days ahead.

    Liz xx

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  34. HEY KATE -have been watching for your post , and glad to hear that the umbrella procedure is done and over with success

    – am happy that some of my thoughts are of help- yes, no matter what people say positive, or not , its always us fighting our own expectations of ourselves— like who asked for this, and why me, are all part of it too— I always say that ‘I feel like flushing my head down the toilet ‘ , when I feel that way , but know that my head is too big and won’t go down the hole —‘LOL’

    – so special that you have TOM’S love
    ——isn’t it just like a pup to do such funny and cute things that you can’t help but laugh , and forget yourself—- and boy thank goodness for that !!—-your little guy is a gem ———————–hugs —-pat j

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  35. My friend had a major stroke, and now struggles greatly with her speech. She regained a good portion of her fluency and while it’s quite effortful for her to talk, she is almost never misunderstood, now. Yet she grieves for her old voice. To me, her voice sounded exactly the same, just a little halting…..until I called her cell phone and got her voice mail. Which was recorded in her pre-stroke voice. And I realized all at once that THAT is the voice in her head, the comparison voice. Not the voice right after her stroke, the one she has moved well beyond. The realization punched me in the gut, and really changed the way I thought about where she is. I didn’t remember her pre-stroke voice, I was just so grateful for her improvements, and the grace of communication. But she bloody well did and does remember it.

    Onward and upward – up those hills.

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  36. Thank-you so much for this beautifully written post – I think that your honesty and clarity will help all of us around a person recovering from a major health crisis. I second the suggestion to get these essays published.

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  37. I so wish I had the power to write one of those fabulous illuminating comments for you. But truth is you seem to have within you the full compliment of necessary bits for a wonderful life regardless of what I have to say – humility, strength, humour, insight, frailty, wisdom, patience, honesty, a puppy. It thrills me to see you moving to the next stage, getting past a degree of your anger, looking forward. And I wish I could say thank you to Tom, for nothing more than being (in the Australian venacular) a good bloke in a world where so many people flee from hardship and challenging things, who abandon relationships under pressure and in the process of change regardless of the cause.

    I see the process you are moving through and the emotions you write about as being very much mirrored in those of close friends of ours who survived one of Australia’s worst bushfires last year. They survived, but lost everything they owned and experienced the worst and most terrifying 24 hours of their lives as they teetered on the edge of death at the centre of an inferno. The effort of reconstruction is a wonderfully purposeful distraction from the horror they recall, from their anger, their sadness, their fear. And over the last year I have watched these things come to the surface now and then, for them to exhibit the odd moment of behaviour, the occasional outburst, depression, swings of mood. They lack much of your insight into their own roller coaster ride, and I know at times they find it difficult to not be further along in ‘getting back to normal’, but as an outsider, who sees them in the context of the continuum between before and the future, everything seems completely reasonable and part of what is to be expected. To us, what might have been remains a much greater contrast to what is than what was before, and easy for us to sometimes fail to pay adequate respect to what has been lost. Their residual anger is an important part of reminding us and keeping the picture whole.

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  38. oh god! is he cute! i have called my dog, now the oldest living animal, “Pooky Loris” for so long i am stunned to know that another such creature actually exists.

    i am excited by the authenticity of your feeling, the bereavement and hatred of people with the luxury of unhealthy living. i don’t know if i’ve mentioned this book before, but i will again, because i have thought of it so often while reading your dispatches from the front.

    http://www.amazon.co.uk/Stigma-Notes-Management-Spoiled-Identity/dp/0140124756

    my scholarly specialty is survivors of genocide. they have “spoiled identities” and must manage them too.
    xxx

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  39. I’m glad it went well! Your post is an excellent one on the effects of sudden illness or disability. I’m sorry it’s been so damn hard and unfair and all the rest. Wishing you healing and recovery and a renewal of self.

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  40. So happy to hear that all went well and that you are climbing onto the next step.

    And thank you! For keeping with the writing and letting me learn a little alongside you (though my learning is markedly more easy), I am honoured to think that your writings have changed how I think about some things and made me a more understanding person.

    Keep getting better, keep smiling!

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  41. I really am in awe of your ability to define and articulate messy emotions so brilliantly. Here’s me recovering from a wee bump on the head and I still feel too tired and woozy to write about it: here’s you with a stroke and a hole in the heart, writing articles that should be required reading for all medics, carers and recovering patients. Hats off to you, Kate.

    After my dad died (too young) I went through a stage of feeling almost insane with unfocused rage. I remember standing in Boots on Princes Street one day with a haze descending on my vision and a ringing in my ears, thinking about murdering someone who had done some trivial thing to annoy me. Rage at losing a good life, whether it’s your own or that of someone you love, is completely normal, I think, and not something to be ashamed of. A book which helped me to realise that was ‘ “You’ll get over it”: the Rage of Grief’ by – well, I can’t remember who, but I’d recommend it to anyone in a similar boat.

    Very glad for you that the stent seems to be a success. Here’s to a return to life and energy and happiness!

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  42. Kate ~ By the sound of it, you might just soon be feeling better than before, when in your gorgeous legs of oak, of last year’s first snow, you had lurking within you a random death sentence. No more ! You have all options now ahead of you now, in firm reality, when pre-stroke you were the Kate of seeming no boundaries, yet you were unknowingly shackled.

    Looking forward is difficult for every one of us, when dwelling in present and better times past, seems just so human, doesn’t it? It’s human and proof that we have complex minds and memories to be able to house so much emotion to experience to self-image, to a recollection of past happiness…but if we could only in the same human capacity, have the ability to have confidence about how the near future can be to our liking as we have every ability to make it. In fact, if we only stay on the path of our belief, with complete faith, we will create and meet our authentic selves as we long to experience.

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  43. My brother is a handicapped due to meningitis.
    After that I must be a very lucky girl. Because every one told me that. Over and over again.
    So from a very lucky lady to another: have a nice weekend!

    Cheers!

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  44. I think you’ve been very brave to not only face up to your anger head on, but to verbalize it openly. Although you have exposed a hitherto unknown side of yourself like that (maybe as much to yourself as to us), it’s only to be expected of someone who seems to have such a voracious appetite for life. You don’t seem to be a half-measures kind of person. I think you’ll grow from strength to strength now, because what you’ve expressed in this blog post is something you can return too if or when you experience those feelings again, and know you can come through it.

    Between you, Tom, Bruce and the brolly, I wish you happy days ahead.

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  45. Been waiting anxiously for your return.
    The umbrella op is one more mountain conquered and hopefully means your sights are now fixed on the far distance from the top. A few hills no doubt lie immediately ahead, but you may feel more confident to tackle them now this is out of the way, and you have two great buddies helping you along.
    As ever, great shot of Bruce. His hint that food or water is required? You are getting him well trained if he goes and gets his own…..

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  46. Once again, you have done a stellar job of analyzing and articulating your experience. Such clarity and maturity in one as young as yourself is a gift, and you are using it well. We, your regular readers, are grateful for every word. We are also immensely proud of you and your dogged determination. You challenge us to greater aspirations in terms of our intellect and our humanity. It is a privilege to be acquainted with you.

    May your August with your new umbrella, Bruce, and Tom, be one of happy milestones.

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  47. Glad your procedure went well. Your description of recovery sounds similar to others I have read, and I know my mum has had frustrations with ME, took her a while to realise that even if she felt better (relatively speaking) she wasn’t and couldn’t magically do everything she used to again.

    I suspect your entries on life post-stroke will be helpful to many people.

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  48. This s so well shared. I weep with frustration, anger, and also with joy for you. It makes perfect sense in response to something that makes no sense at all.
    I feel so fortunate to be able to be aware of you, part of some cyber team that cares so deeply for you… and Tom… and Bruce… and Jesus.

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  49. ”you are the only person who knows how crap things really are. ”

    Had to stop reading at this point……it was all too upsetting.
    Yes, yes yes, to everything you’ve explained, i.e. having had serious bouts of illness, and trying to recover over the past 10 yrs I know exactly how you feel.

    There are parts of me I am not going to get back again, and bits of me that are extremely badly scarred….and it is annoying when docs say ‘But it could have been worse….’ what sort of help is that!

    So I know exactly what you’ve been through even though we have totally different types of conditions. After 10 yrs of it though, and many more to go……I no longer have any fight or words left in me to even have a good gripe on my own blog. People say I am always so positive and don’t let it affect me…..but it is only exhaustion and mixed feelings that makes me keep the darker bits so quiet.

    I still feel upset, about not being able to knit as fast and do my designs with limited movements etc….but you’d not be surprised at how many docs have laughed at me, when I have complained about not being able to knit or crochet properly….like its a joke!

    I used to be a Sign Language communicator and had to give up when use of my hands got restricted. One doc suggested I tried to find another profession, that did not use my hands. ”Like what?” I ask ”Well,…….you could work in a shop!” He says utterly cluelessly.

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  50. Great news that everything went well and that it has already made a huge psychological difference. I can fully understand your feelings of anger and frustration and I think your post was great because you were open and honest and not afraid to demonstrate the extent of it (i.e. your IKEA incident).

    I also agree that it’s hard not be distracted by an adorable puppy and am glad that you and Tom have decided to get one now as part of your family.

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  51. Glad to hear you’re feeling better – and yay to the possibility of less migraines!

    Thank you for such honesty – I live with migraines and find myself frequently censoring how I really feel for fear of transferring negative energy to people who don’t need to be exposed to it. I tend to feel guilty when people tell me that I’m brave or lucky. But it’s exhausting. I try to rationalize it with thoughts like “I don’t have cancer, or MS or anything *really* debilitating” as I fail to get basic things accomplished and miss work. I try not to feel sorry for myself. But then one day, when you’re in the throes of a two-week migraine and have managed to function enough to brush your hair and visit with family for an hour or two, your mother will say something like ” You think you’ve got it rough? Mae across the street has terminal cancer and won’t make it to the end of summer. There you go.” And it’s all you can do to not unleash a vitriolic tirade in her direction.

    I know that so frequently people are just trying to be positive and encouraging, taking the time to acknowledge accomplishments that seem little or simply reclaiming lost territory. It’s what I do – try to hang little happy lanterns – but sometimes, you need to acknowledge that fact that you’re allowed to feel dark and terrible and say plainly that having a stroke sucks. Thanks for the transparency and reminding me that I’m allowed to be human. I needed that today.

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  52. I’m glad it all went well. We all have ‘why me’ days – even 31 years after my horrid surgery I still have ‘why me’ days – but then I think of what I have done with my life, not what I might have done if things had been otherwise. Do get in touch if you fancy a visit to the Borders – I’ll even bake a cake!!

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  53. Happy the umbrella is working! Good news, indeed.

    I must say I have always found it highly annoying when people will say (esp. to others in dire situations), “You should feel grateful (happy, lucky, fill-in-the-blank), as you are so much better off than so-and-so.” What utter crap! As though one person’s pain is somehow mitigated by another’s difficult situation. Please people, do not use this form of pop-therapy on someone who is reeling from their own crisis thinking it will make the person feel grateful. As Kate points out, it doesn’t change her (or other folks) situation. It doesn’t lessen the sense of loss or frustration, it merely hurts already bruised folks by making them think that somehow they don’t have the right to feel sad, or angry, or generally pissed off at the world just because someone may be worse off. Sometimes one is simply incapable of dealing with any reality but one’s own.

    So Kate, as you work through your reality (with much greater grace than I would, I have no doubt), may you continue to find joy in the blessings of Tom and a very cute puppy, but may you also freely give yourself permission to feel like shite when necessary to get over the humps!

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  54. This entry was beautifully articulated. I could relate to it directly on a few points (mostly in relation to the loss of my father, who lost his mobility when I was six and died very young). Your writing and your ability to self-examine are a gift. Thank you for sharing these thoughts. Wishing you all the best! Stephanie

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  55. O.K., I’m nowhere near as articulate as you are, but I’m going to try and express my immediate response to what you have written. Just in case, I need to say that there is no criticism or judgement in my words. I’m just going to express my point of view.
    The thing is this : Life’s like that.
    For me it’s like an accelerated aging process. I find myself mourning my younger, more mobile, agile and fitter self. I find that, at fifty, my lack of mobility and lack of confidence in my ability to just walk somewhere, very depressing. As if I took a fast track to 80 or 90. So unfair. So unfair that people pass judgement on that and my not inconsiderable size. [I hate Pringles, by the way!]. None of us knows a person’s history when we see them on the street. It’s very easy to judge and resent. Things are rarely as black and white as they seem.
    Of course, the person we tend to be hardest on is ourselves !
    There are times when I wallow in the unfairness of it all. Rage, internally, about how crap my life is. How unlike my previous life, or my desired life. Most of the time I decide to be as happy as I can be. That isn’t meant to be patronising. I’m just talking purely about myself. The only person I can authoritatively comment on !
    I speculate that things are much harder for you as you were so much fitter and agile than I ever was. My mobility is affected in different ways. I empathise completely with your frustration and irritation. I absolutely hate having to ask someone to make me a mug of tea, that I often feel desperate for, because at that moment in time it is more than I can manage.
    The main point I want to make is that you will never be who you were before. Even as you regain physical strength and ability, things are forever changed by what has happened and by time. We have to look forward and be glad to be here, even though those two things are, at times, incredibly hard to do.

    I am so pleased that your umbrella stent is safely in and hope that you feel increased improvements because of it. Please don’t be cross with me for saying that I think you are doing very, very well. It’s been a pleasure and a privilege to watch you working toward better health and quality of life. I very much admire you.

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  56. Thanks for sharing. I completely understand the feeling of anger and hatred towards complete strangers for not being in the condition you have so much difficulties and worries with, though I was not ill but didn’t get pregnant for years. Whenever I saw a pregnant woman, I was so full of anger and really nasty feelings that I hated myself for being able to feel that way. And I second the thought on IKEA. ;)
    It’s wonderful that your OP worked out well! Take care!
    Best wishes from Germany,
    Ulrike

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  57. Have been checking daily all week, hoping all went as planned, and it did! Great! Now on to the next step, ne? The “Bruce” in my life helps me, I hope it is the same for you..

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  58. I just love the way you can put so much complex emotional stuff in to words that explain things just so perfectly.

    MASSIVE big hugs to you.

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  59. Kate, it is so incredible for you to give us these blog posts. While we’re all waiting anxiously for updates, you of course don’t owe us anything – you are under no obligation to write for us. Yet you do anyway, and it is such a marvellous privilege to be allowed this insight into your life, to be given some understanding of what you’re going through. For some of us, what you talk about will be painfully familiar, for others it is a world away from anything we’ve ever experienced, but having you share the experience with us is a wonder, and I hope it has been as therapeutic for you as it has been enlightening and touching for me.

    All the very best to you and yours, and here’s to the future.

    Emma x x

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  60. Congrats on the umbrella, and thanks again for the post. I underwent treatment for a brain tumor years ago, at 21, and am only now dealing with some of theside effects, follow-on treatment, and emotional whatnot. I keep telling my family, “no one wants to hear they’re lucky!” Because for having a brain tumor, I’m doing really well…. but who wants one in the first place? Lucky me!

    You’re also spot-on about the guilt part, which I’ve never put my finger on quite like that. I can’t get out of my mind all the people around the world who would have (and have) died in my situation – even in my own country (US) where the care is available but so financially prohibitive. I think in this case, that’s not such a bad thing to keep in mind, but talk about pressure. At 28 I’m already going through some of the upsets of “what does it all mean” and “what have I accomplished in my life,” and the messages I get from others about my good fortune and what life is really worth compounds that to a pathological extent.

    At any rate, I don’t know that any of that will make you feel better :) but just know you’re not alone, and you’re doing a great thing with this blog. And your dog is precious.

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  61. So happy and relieved that the procedure went well! Thank you for sharing this, all of this. The anger is hard, I am still working on it. I have thoughts very much like yours about why my healthy, wonderful partner had cancer and that person has not. Your writing is so helpful and meaningful to so many of us, thank you.

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  62. I’m so happy the ‘umbrella’ is in place with out problems. Your description of the grieving makes perfect sense, including the anger at people who didn’t have a stroke. I look forward to your continuing progress.

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  63. I am so happy for you. I have been clicking on your blog hoping to read that the umbrella stopper has done its work. It is quite amazing what these doctors can do.
    your words about your feelings are also quite wonderful. I have gone through a few things myself and you have managed to write about some of the same thinks I felt as I went through therapy. although you might think your thoughts are bad about other people it is what normal people go through who aren’t saints or martyrs.

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  64. Kate, I am happy the procedure went well.
    I also totally understand the anger and misanthropy. My father died at the age of 54 of cancer. He died 10 mere months after being diagnosed. I was in my early 30’s and not only deeply loved my father but also greatly admired him as an incredibly brilliant man and also a GOOD person overall. For years I would ask myself why HE had to die and some “no good for nothing” person was still alive. Many times the “no good for nothing person” included my own relatives :-) It is very hard to admit there is no rime or reason of why crap happens to us. In the end I decided I at least had his company for those 30 years.
    I also decided to do the psychobabble thing which is bad things happen to everybody but it is how I deal with it, not letting the bad thing define me, and make me into a person that is less than myself that makes me who I am.
    All the best on you journey to recovery, and Bruce is just adorable!

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  65. You say you can do very little but knit and limp around the park. Don’t forget that you are a $%^& good writer, and I am continually amazed and grateful at your ability to express what has been going on with you and your willingness to share it.

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  66. Yeah! I am so glad the umbrella procedure went well.
    Thank you for sharing your insights on the ins and outs of recovering, so well stated.
    Lots of love,
    Chesley

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  67. Kate..
    1. I am so happy for you that the umbrella procedure went well and the improvement was almost immediate. And can appreciate that being alert must have been very weird.

    2. I hope that you are thinking about compiling these essays for publication. They are very valuable to people in similar circumstances and to rehabilitation specialists.

    Best of the weekend to you as we transition into August! It’s got to be a better month.

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  68. Again, you have found the perfect words to describe your situation…I am so happy for you that you are feeling so much better!
    I do believe it is a good thing you didn’t know you would be awake (!) during the procedure….
    Take Care and give that pup a pat from me!

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  69. Kate, thank you. That really made me think about how I interact with patients, I’ve sent a link to my class of newly qualified nurses.

    You tell your story so well, I hope it stimulates their thoughts too.

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  70. Human nature is what it is – for you and for “them”. And lucky you, you have that puppy who just needs your love in return for his (or is it hers?).

    Like

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