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| Kindle Clippings File - graphic image only |
It's not that I can't sleep – not in the way that many people can't sleep because they're worrying about things. It's that at 5 AM I was jolted awake by the all-too-familiar pinging in the fingers telling me that a focal seizure is under way.
I was lying on my left side. It was first light, still almost totally dark in the bedroom. Usually when I feel a seizure coming on, I turn and lie on my back, but I decided to stay exactly where I was and see how coping with it went lying on my side.
The other fingers began to get into the act strongly. It's strange how it nearly always starts in this one place, the fingers of the right hand, where the very first seizure began over a thousand days ago. 1088 days, to be exact. This time it spread to the thumb, which isn't usual.
I don't like that. The thumb joint always has been perfectly mobile in all this time, giving me whatever power to manipulate objects that I have in the right hand. I was getting fairly good at using a dinner knife and tying my shoelaces again.
It was quite a strong seizure, and as it died away slightly in the hand I felt the iron sheath slip over my upper arm; creeping then the right side of the torso. It wasn't painful; just uncomfortable. Always a bit disconcerting, not knowing if it's a prelude to some grand performance.
It went on for a couple of minutes, increasing in force, and I felt nauseous. Then I felt it weaken as the sensation gripped the whole right side. Back to the fingers, and then it died away.
It was probably two minutes and not much more, but I couldn't be sure it was over. There comes a time when I do know. I needed to lie there until any paralysis effects wore off. I was glad I didn't feel like my bladder was full. I didn't want to get caught in no-man's land in the bathroom like that other time, towelling off after a shower, when I fell and did all that damage to my back.
I felt glad also that we made the decision long ago to sleep in separate bedrooms, in order to minimise unnecessary disturbance. In this case, if Tracey had been in here, she'd be just as jolted awake as I was, at the time she sleeps deepest – but when there's nothing she can do to help.
There's a bell I have at hand. If I ring that she'll come running, knowing I would use it only when I thought she needed to be there; if a seizure had gone on too long or getting weird, for example. That's not now. The time may come when the bell-ringing gets more frequent, but not yet.
It seemed that the seizure had passed. On the surface and as an isolated event, that particular one was trivial. But I needed to stay there, as safely as possible, until I was as sure as I could be that it was over.
I'd have gone back to sleep if I could have - I've done that before, but I knew that the watershed moment beyond being able to turn over and sleep again had passed. The main window, the one cracked by the earthquake, faces east. It had grown lighter and a large flock of cockatoos had settled nearby; quite noisy they were. Very close. Other birds began their morning songs.
I turned on the light, made a mental note of the time, and carefully I made my way to the bathroom. What to do next? Sometimes when I woke early, but not from a seizure, I would do the daily exercises. That felt a bit dodgy just after an 'event'. I went back to bed, and reached for the little Kindle.
Or, I could read a couple of articles from the web I'd located yesterday that I'd decided I preferred to study on the Kindle screen. Doing that the way I do, details of which I'll spare you here, means that I can make notes in an electronic file that I can drop on the computer.
And what did I read this morning? Two articles that hang together. Disgust made me want to get up and write. I was going to talk about them right here, because they couldn't possibly be more relevant to my life – and death – than anything else at the moment. So I took my notes, and now here I am to talk about them. Which is funny, because both you and I have had enough of this epistle for the moment at least, and the seizure has blurred my vision, so that will be Part 2. Frankly, I'm surprised we made it this far together.
I need to eat now, and take my pills. It's 7:50 AM. By the time I've done that, and cleaned this up, it will be... let's see. [Insert posting time here ==> Nearly 1:00 PM.]
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| The reason for the cockatoo disputes. Cherry tree now stripped. Not one cherry remains! |
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After the pills, I felt a bit wobbly, and realised the possible precariousness of my position, so I went back to bed, and woke at 11 AM. That sure puts my routine for this day in a tailspin. Hey, but I'm still here.
As long as the roots are not severed, I, We, are glad you are here Denis!
ReplyDeletePresident "Bobby": Mr. Gardner, do you agree with Ben, or do you
think that we can stimulate growth through temporary incentives?
[Long pause]
Chance the Gardener: As long as the roots are not severed, all is
well. And all will be well in the garden.
President "Bobby": In the garden.
Chance the Gardener: Yes. In the garden, growth has it seasons. First
comes spring and summer, but then we have fall and winter. And then
we get spring and summer again.
President "Bobby": Spring and summer.
Chance the Gardener: Yes.
President "Bobby": Then fall and winter.
Chance the Gardener: Yes.
Add a bit of Forrest Gump to the mix, and it's probable many of us have Been There.... :)
DeleteThere's an Indian film a bit like that (of course). It's called "My Name is Khan":)
ReplyDeleteIt's pretty heart rending reading this post, but as always we are privileged to be with you on this journey, in some sense, at least. We cannot begin to feel the reality as it is for you or your family. How is your thumb by now?
Waiting with curiosity to hear your views on the articles that so 'exercised' you!
Our cherries are all gone too -and the plums.
Julie M
Re the Indian film - I had no idea. A Hindi one?
DeleteThe thumb is OK, both it and the joint to the hand. Good!
I've held off on the article[s] that made me cross. I'll return to them, but in a watered down version. No writing was ever hurt by letting the ideas settle a little. It's a topic that is all too easily misunderstood – well, let's say, an emotive one.
Now I've developed this technique of linking pieces in the way I have, they don't need to be adjacent. Still, I do try to keep them together lest I seem more even scatty than I am!
Your ability to observe and discuss even in moments which must be scary is absolutely amazing. I hope all side effects of the seizure are now gone.
ReplyDeleteYour mention of the bell brought memories to me. My five year old grandson was amazed at my rapid response when his grandfather, then bedridden, rang a crystal bell by his bedside. With oesophagial cancer he could not call. Now the bell is in its former place Alex cannot believe my response to his chiming it is not so rapid. "But Grandma I needed you". It is a very strong memory for him. I will be sad if he loses it. Anne P
Hi Anne. The more extreme things that happen certainly burn into the brain, though a week later, it gets confused. That's where the past entries in the WHAT'S NEW! section of the blog sometimes becomes a revelation to me. Some things I thought happened just a few weeks ago I discover are almost identical to ones of a year or more ago. Never trust your memory!
DeleteAs to the bell incident and your failure to respond promptly enough, we can only smile, can't we? It's always nice to be needed! For some reason Marshall McCluhan's comment popped into my head, "Foam rubber makes you feel wanted!" [Oh well, it was Marshall McLuhan after all, of Global Village fame, and people often thought him a bit odd.] BUT his 1960s predictions of a global village don't seem too strange now, do they?
Alex will never lose the memory, you can bet.
You are such a stalwart man .. it puts my whinging to shame. Not bad shame, just a little bit of the "Why me's" going on at the moment. I think it's the wind and rain. We are two days away from Summer and I have trackie-daks and sheepskin slippers and the bleedin' heater on at the moment. It's not right! I wonder if Tony Abbott knows about Climate Change yet? By the way, you are a very handsome man .. boy, whatever. No matter how old we get we are always the pretty one, the handsome one .. in the eyes of those who love us.
ReplyDeleteHah! Thanks Liz. No, get away from the 'Why me?' It's destructive and useless. But of course it's the jealousy that comes with seeing others seemingly going through life without a care in the world [or complaining about petty nonsense] that triggers it.
DeleteIt's all relative. It always is. I know you have your cross to bear, motoring around in that wheelchair.
I'm not going to complain about cold feet any more after the nasty impact the hot weather had on my system in the past few days [and right when the proteinuria test was under way]!
I do have to admit; we never looked better than when we were teenagers, had we but known it then. [Maybe better that we didn't, to retain some humility....]
Hi Dennis
ReplyDeleteYour blog wonderful, also a huge contributor to life in that garden and the blog too
- my history in this relation to brain tumour is here:
http://aplaceof.info/margaret/
http://ozbraintumour.info/
I don't have a brain tumour, though I know lots of others with them. Very hard over time to see why some win the longevity stakes. I know people with same AAIII tumours who have survived a decade, some with a massive history of diverse treatments, other with history simply of initial resection and radiotherapy. Such heavy investment in drug options, without progress in the business of understanding tumorigenesis itself, even the question of whether recurrence is because there are dormant rogue survivor cells or a resumption of an un-understood process of cells deciding to de-differentiate and become tumour cells.
What I do share it your experience of being yanked awake by adrenal screechings during the night. I went through many many years of all sorts of failed explanations for this before a sleep test this year showed that a big adrenalin wake-up (intense dream, brain, bladder, etc then not getting back to sleep) was an adrenal shove out of apnea. On the test night when I was thrown out of sleep and did not get back to sleep, at 2.30am, I had not breathed for 50 seconds. Not easy to simulate that... I would expect focal seizure events could be generated by rapidly arising adrenalin, triggered to wake up a person whose breathing has stopped, whose blood pressure gone very low, etc. We wake up because adrenalin rises, but these are sharp spikes.
Apnea is a symptom not a disease, the causes are whatever, for individuals, but it is making an impact on a swathe of health issues for me to wear an apnea mask and actually sleep for some hours relatively soundly.
The apnea seems to be one factor in my having developed an amount of gliosis in recent years. Clearly poor breathing in the night contributes to hypoxia, which is a key to brain deterioration ... though of course as you know tumours don't care about oxygen, abandoning mitochondrial respiration in favour of glycolysis as the somewhat forgotten Otto Warburg showed long ago. http://en.wikipedia.org/wiki/Otto_Heinrich_Warburg
... forgotten perhaps because on the wrong side of political history.
My view is that the prevalence of cancer in modern life reflects the way stressors diminish the focus of mitochondria on apoptosis, allowing aberrant cells to survive. Useful to look at the political arrangements in cells, dictated to by mitochondria, enabling complex organisms to arise from a point 1.5 billion years ago, is in fact, in universal terms, a relatively young and resented workplace 'agreement' which cells (using intelligence http://www.basic.northwestern.edu/g-buehler/FRAME.HTM wilfully as Homo sapiens also does) can want to overturn, heading back to dedifferentiated anarchy as in the life of bacteria.
Just some thoughts for the historian :-)
best wishes
Dennis
pardon the typos and the misspelling of Denis, Denis :-)
ReplyDeletecheers Dennis
Dennis: apologies – going through comments I see that I haven't responded to this one. For the moment, this is just an acknowledgment that I have seen and read it, and will get back to it – with sincere thanks.
Delete