So, Ava-Jane has had her throat slit open, which makes for a ready-made Halloween get up but will be yet another scar on her already much-scarred body.
She has been opened up three times for her heart operations. She had a Hickman line inserted to pump her full of the chemotherapy drugs that fixed her leukaemia while at the same time as it whacked out half her brain. She has got a permanent hole into her tummy for her feeds. Apart from these biggies she has been pricked and probed with all sorts of implements.
And now she has a titanium implant and a wire wrapped around a nerve that leads directly into her brain. She had the op to insert the device three weeks ago and it was fired up yesterday. We had the training from one of those old-school proper nurses who talked us through what it was all about. We have got a couple of magnets that we are to swipe over Ava-Jane if we think she is going to have a seizure. We can choose between swiping in a Z formation or an X. I thought the Z would be pretty cool as it took me back to my childhood fandom for El Zorro! X is not so cool what with it now being indelibly associated with Elon Musk.
I will struggle to explain very precisely how all the various parts of this medical miracle interact between each other. I mean, who knew that the vagal nerve was actually a real thing rather than a line that might appear alongside chakras on some new age depiction for alternative, spiritual, holistic medicine. But no, Ava-Jane had a very non-alternative op and been plugged into very non-spiritual electricity that can be cranked up remotely. So really not very holistic at all.
You swipe the magnets to give the implement an extra electric boost if you think she is going to have, or is having, a seizure.
This is a week on and we have not yet seen any great improvements. She has not had fewer or less intense seizures and she is very unresponsive and under the weather. But neither of these situations tells us much about the success or otherwise of the procedure overall. They start it off at a very low level to begin with and crank it up over time, so it could be up to a year before we notice any appreciable improvements. And as to her being unresponsive and under the weather… well it’s October and she that’s the way she rolls. She’ll be up and down, in and out of responsiveness from now until spring. Does it help that she has had her throat slit and a lump of titanium inserted in another cut? Probably not.
Fo has done her hip in and it was Ava-Jane’s half-term holidays this week. So I took some days off as it is really tricky to look after Ava-Jane with a dodgy hip. Also, you can’t exercise your horse. So on my days off I did some AJ looking-aftering, and some horse exercising. I hadn’t been on a horse for a while and thought Fo’s suggestion that I took Ludo out for a jaunt sounded like a fine idea. And well, it was, overall. Ludo is a very beautiful horse. She is amazing galloping around jumping things, which I did with Otto about ten years ago. But she is one of those horses that doesn’t much like going on meaningless hacks along the road. She drags her feet and spooks at everything on the way out and then jogs home with a spring in her step.
When I say that she spooks at everything, she behaves like she has read Black Beauty and dreams of reenacting the scene when Beauty refuses to cross a bridge even when impelled and it turns out that she saves the day as the bridge has collapsed. Well that’s what Ludo thinks she is doing when she refuses to go past a manhole cover; saving us both from a horrible death. It’s as if she is saying, “That manhole cover looks like it could be about to collapse. Humans don’t have the horse sense that us horses have about these sorts of things. Have you even read Black Beauty?”
I rode over to see my friend Andrew just like I used to do when I was a kid and stopped off at the pub for pint on the way back – not something I used to do as a kid. I do like turning up at the pub on a horse.
But seriously apart from my horsing around, I have had some extra time with AJ. She is quite unengaged but if you have got some time to put your all into it, Ava-Jane will give back. We went on a very random trip to the Milton Keynes shopping centre. This is not one of my dream venues, it has to be said. MK is apparently one of the country’s leading shopping centres. However, shopping is not really my thing, so that’s not really much of a pull factor for me. But it does have one standout feature – very flat floors.
If you are hanging out with someone in a wheelchair, flooring is important. There’s nothing finer than a nice flat, smooth floor. In Milton Keynes, Ava-Jane and I can glide, hand-in-hand for miles, up and down the shopping centre.
We live on a farm and we really don’t have any smooth surfaces; we go from brickwork to gravel, to knobbly grass and potholes.
Ava-Jane has just reached hero status in my eyes (though she reached that a long time ago). I had some Bob Dylan on and told her we were listening to o Bob. Then she piped up with “Bob, Bob”. She might be largely non-verbal but she cracked language with that IMHO.
Now I know some of you get fed up with my political rants, and I have got one lined up in my notes. It’s all about how Trump’s anti-immigration policies have worked (he really has reduced the number of immigrants in the US just as he promised) but then wondering whether slashing immigration numbers has really fixed all of Americas problems. I even did some very biased AI research and everything.
But I might have to delete it all in favour of… Literary Criticism! Ta-da, what more could the readers of this blog wish for. If Luke’s thoughts on politics weren’t bad enough, now you’ve got Luke’s thoughts on books.
I had a big Sylvia Plath moment when I was about 17, a somewhat uncommitted goth and a bit of a pseudo-intellectual at the time, the tragic poet consumed by her own genius appealed to me. But to be honest, I have never really been one for poetry so it was her novel, The Bell Jar, that I really liked. It was covered on The Book Club podcast (highly recommended), and as it is a long time, well 40 years since I was 17, I thought I would give it a reread. It’s a very different book for a 57-year old than it was for a 17-year old. The protagonist/narrator is 19 at the outset and she is wondering what to do with her life. She expectations that appear preposterous to her elders, like suggesting to her tutor that she could do away with marks for her work, explaining that “marks were really a bit silly anyway.” Obviously at the time I identified and agreed with her. But my now aged self now empathises with the poor tutor having to put up with such nonsense. Even though the protagonist/narrator is essentially Sylvia Plath herself, she was a 30-year-old mother when the book was published, and is laughing at the nonsense and drivel coming out of her younger self.
I am still in the first section of the book, where the narrator is commenting wryly on the world of 1950s New York fashion magazines. She will go on to have a psychotic episode and receive a treatment of electro therapy.
And there’s another key difference between the me that read this book 40 years ago and the me of today. The me of then was not the father of a daughter who was on the receiving end of an electric-based therapy. And I imagine the psychotic episode that is coming up will be a very different read for me now being married to someone who has had two severe psychotic episodes since we have been together. Fortunately, unlike Sylvia Plath, Fo has bounced back magnificently.
Plath did recover from the psychotic episodes of her youth but then went on to take her own life just after the Bell Jar was published.
The writing is amazing, well, I suppose expect that of a poet. Even her description of food poisoning from crabmeat stuffed avocados is poetic.
I love this sentence:
My German-speaking father, dead since I was nine, came from some manic-depressive hamlet in the black heart of Prussia.
Life can be quite full on, what with looking after Ava-Jane and work, so I am always keen to catch and enjoy good moments.
Sylvia Plath. A fine sherry. Green olives. Pretzels. Fire lit. Leonard Cohen.* Making wry notes for the blog. These kinds of moments. Ava-Jane is away tonight. Fo and I have got chicken kievs and The Traitors lined up. Enjoy the moments.
I might well have jinxed the evening. We’ll probably get a call from AJ’s respite care to say that she is struggling and needs to be collected. And it’ll be just as we are about to discover who is being banished Unfortunately for Fo, I am the one who has been supping on sherry, see above. So she’ll be the one to be collecting Ava-Jane.
Note: she made it through the night and was in fine fettle when I picked her up today. They had a load of animals come to visit the respite home, which she apparently loved and they have installed a wheelchair swing!
*I have to say that the combination of a very dry sherry, green olives, Leonard Cohen, and some salty pretzels did work extremely well together. Try it sometime.
