I got me . . .


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)