I’m only as good as I am in my worst moments. This is what I have learned, or perhaps re-learned, recently. I’ve been going through a lot of physical pain, and pain has a way of reducing and diminishing me, bringing me down into a state of unclarity bordering on despair, so that my best efforts at staying conscious get to be a struggle.
This is affecting my writing. Already, peripheral neuropathy in my fingers has made typing difficult, and my fingers miss the buttons, and there is so much correction and re-editing to do that I lose track of what I’m trying to write.
Unfortunately, using speech-recognition software isn’t as simple as many people believe when they recommend it, and it doesn’t work well with me. That said, about one third of this blog was first-drafted this way, then re-edited.
It’s the pain that is really doing it. Pain demands complete attention – it is merciless, scooping up consciousness and attention and blurring my inner focus. It’s my left foot only, but the pain level is so high that it can keep me awake all night or, in the day, at times bring up tears of helplessness. I’ve also been weakened by tiredness – finding myself wondering whether it is day or night, what time it is, and what’s happening.
So I will not be writing as much as I have done in the past. Which I regret, because writing has been a major part of my life – I’ve spent mega-thousands of hours doing it. But that’s the way things are now and I must accept it. The pain I am currently dealing with soaks up so much of my attention and energy, and that’s that.
This brings up something of a fear. It is the fear that, if I say nothing and go quiet, I’ll be forgotten. It’s probably an early-life psychological issue or a past-life memory, or both. I can be forgotten for perfectly good reasons – people are busy, and so many things shout for our attention, and people assume that, if I’m quiet, I must be okay, or that perhaps they should not disturb me. Or relationships become digitalised and weakened, with a constant stream of how-are-yous with little or no face-to-face contact. But I do have people close to me who keep their eyes on me and I much appreciate their involvement in my life.
This is about neurological pain. It’s to do with the interaction of our neurological system (the information system), which is plugged into our body, and our conscious mind, which isn’t directly so. It has a lot to do with what we give attention to. However, it is easy to say this, but when in deep pain it’s difficult to summon enough focused attention to change the pain from the inside.
Pain has a way of forcing us to pay attention to it whether or not we wish to. It sucks up all clarity, positivity and perspective. It’s important not to panic and to avoid getting too caught up in it, though this in itself can be difficult when the pain gets mixed up with nightmares and dream-stuff in the quiet loneliness of the deep night.
Holding my focus has become more of an issue. I wrote a blog last week and ground to a halt with it. This is what I wrote…
I don’t know whether Agonos is a proper Greek word but, in the middle of the night a few nights ago, it gyrated around in my mind, aptly describing the state I was in. Things have been tough, and daily life is hard work. I’m doing quite well regarding the blood cancer, Multiple Myeloma, that I’ve had for seven years now – it is held at bay with cancer drugs. It’s the side-issues that cause the agony – especially peripheral neuropathy – and I have also acquired a secondary skin cancer, a carcinoma. Doctors’ visits, tests, pills and interventions are increasing.
I feel like I’m in my Nineties, shuffling around like an old crock. Things have been changing in recent months, and life and my medical condition have been getting more complex, as have relationships with the various different doctors I’m under. It’s a long uphill grind. The pain in my feet dredges and wrings me out. I have some fundamental life-questions to sort out too, the main one being this: is all this toil and trouble actually worth it?
Peripheral neuropathy is a side-effect of cancer drugs I’ve taken since 2019, which have killed off the nerve endings in my feet and fingertips. Initially it leads to an ungrounded loss of feeling – I learned to live with that though, since the cancer drugs have kept me alive and I’m glad about that. But recently it has developed into two kinds of acute pain: one is a feeling of burning in the feet and the other is a bony pain, like the excruciating pain you get when you stub your toe. Except it doesn’t go away.
These happen when I am sleeping, relaxing and not moving. With a vengeance. When I move around the pain usually subsides. But I cannot move around at all times of the day and night – I need to rest and sleep too! The sensors and signals in my neurological system have gone haywire, sending the wrong signals to the brain, which registers pain and exaggerates it, sending the wrong signals back. This is rather ironic, for one who has spent so long on computers! It becomes a psychological loop that is difficult to break out of, even with painkillers.
I was given a drug (Amitriptylene) to deal with the peripheral neuropathy, and it helped partially, but it had a big psychological effect. It drained my willpower, making small tasks seem big, and making me ask depressive questions like ‘What’s the point?’ and give up. In the blurb for the drug they do say ‘risk of sui*cidal thoughts’. I’m not desperate, lost or unstable enough to be thinking of that, but I can see how such thoughts can develop with that drug. So I’ve been switched to another drug (Nortriptylene) and I cannot yet tell whether it is helping or when it will start working (it takes 4-6 weeks, apparently). The question drags on.
I’m unhappy about the number of drugs I’m prescribed and the number of doctors who are tinkering with me – none of them know me and they tend to look at the computer more than at me. Tests and scans are amazing, but sometimes a look in my eyes or a feel of my feet would do better – cheaper and faster too. The doctors and nurses are all good people, doing their best, but they work in a medical system that is not really designed for humans – for the whole human.
So that was what I wrote and didn’t finish. It’s the same with this one, where I need to report to friends and relations what is happening, so that you know, and I’m not sure how to finish it.
I’m making some sort of progress though, giving the pain less attention, taking more of an uncomplaining and accepting attitude – when I can – and receiving some insights into my father, mother and ancestors, and into the way of things.
My left foot hurts a lot right now. I wish this would end. I guess there must be a good reason why it doesn’t. I haven’t found it though.
Eitherwhichway, I wanted to give you a read-out on where things stand for me. I’ll probably be saying less and recycling more in the way of old material from now on (but it’s good stuff). But I have a new digital helper here in Cornwall, Lucy, who, all things being well, will handle my online affairs when I lose the ability to do so – we’re running in and working through details and questions, as time goes on.
Thanks to all of you who have been following my blogs, pods and other outpourings. After getting cancer it gave my life new meaning, and the creativity of it has itself had deep healing effects. Were that not so, I think I might well have died in winter 2022. I am so glad that good souls out there like you have been enjoying and benefiting from them, and so grateful to have touched the lives of so many people – as you have touched mine.
In life’s final chapter, as daily life gets more difficult, the multi-level, even multidimensional costs and benefits of staying alive can shift, and the costs can get to outweigh the benefits. Just getting up out of a chair or clipping toenails can be quite an operation! Sometimes cooking food wears me out so much that I can’t eat it (but often I cook for 2-3 days each time, so it’s not disastrous).
I’m active and functional for about six hours each day, usually doing catch-up things – phone calls, messaging, clearing up and self-care – and then I wear myself out even more! “Palden, why won’t you reply to me? Have I done something wrong?”. No. I can’t keep up, that’s all, and I lose track, and I can’t spend all day at my computer.
That’s the way things are. I’ve written here about problems and hard stuff, yet I’m still grateful for the experience. That might sound a bit schizoid but, for better or worse, throughout my life I’ve always tried to make the best out of apparently bad situations, and it doesn’t stop now – and they aren’t necessarily bad either, if handled well and turned around. I’m minded to dredge up a quote I quoted several times a few years ago in my blogs:
It’s okay in the end. If it’s not okay, it’s not the end.
I was given that jewel of wisdom by a Berliner, while standing amidst the geological drama of the Sinai Desert in Egypt in 2012. We were like ships passing in the night, briefly meeting as soul-friends in the middle of the void. I wish I could remember his name.
Love, Palden
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The pics are from Zennor Hill and Sperris Croft in West Penwith, Cornwall. Some of these rocks are natural (it’s weird granitic geology round there) and some are placed or moved – back in the Neolithic, around 5,700 years ago. The question is, which are which? With some it is clear and with others it is a matter of debate.
Notes from the Far Beyond 