Some Long Writer Thoughts of February

Written at different times over the last month

Long Thought One:

Woke up thinking, alongside whether I could bear to do battle with voice dictation today, that it's approaching five months since my brain traumas began with a subarachnoid haemorrhage. As some of you know, this led to emergency admission to hospital where I was not treated well, in terms of the system and how it approaches those of us with lifelong impairment and chronic illness. Close friends will know what I refer to.

Due to a number of poor practises and decisions early on, I went on to have six more bleeds on my brain. This was discovered after my dear friends fought to point out, as I was semi-conscious, and stuck on an inappropriate ward, that I was having continuous seizures and vomiting. It was through my PAs and those darling close friends that I was taken at last to intensive care.

I don't often share this much detail about my medical conditions on publicly, that's not my style for many reasons, and I often find it rather embarrassing. But I felt recently that it may be important, for myself and others, that I reach out for more understanding.

The effects on my life have been catastrophic in most ways, adding to a life already full of rare and complex medical conditions. I do feel blessed to have such loving friends, and it is something short of a miracle which perhaps stems from their love and support, that I am even here and alive, and that there are positives and surprises. I still have difficult with certain aspects of memory processing, subtle challenges with speech and the level of fatigue is indescribable, with perhaps, if I'm lucky an active daily window of 3 hours. Active in this context being relative. For me it means awake and functioning reasonably.

It is also suspected I'm having regular mini seizures and complications. Unfortunately, the devastation to our NHS by the Tory scum has really manifested all over my ongoing support and care. Which I have to say is little more than zero.

Please don't feel sorry for me. While I love you for your care and support, sympathy and pity are useless twins that fall by the wayside in any quest to heal and at least find stability when facing such situations. (Much more on this topic of pity porn and sympathy sludge on a Substack soon).

Don't get me wrong, I bathed in a big deep bath of self-pity for the first month after the bleeds I would say, slipping into self-hatred as new routines had to be learnt around pain and weakness that was and is indescribable, even to me.

Yet I do feel a startling new liberation in expressing myself, in my writing, that I'm told is almost miraculous. Even my editors remark that my work is sharper than ever, with new levels of clarity and lyricism. That's a real boost to a poorly crip, a "frail" writer aged 63, forced to wallow in the permanent literary purgatory of "emerging". I can but hope that one day they may even consider me to have arrived and to be out of the bud of emergence and in full accepting literary flower!

I'm rather proud of this post. It's taken well over an hour to get it down with voice dictation, to go through the process with a PA with a little bit of cut and paste.

But here we are. Thanks for reading. The sun is out in Hastings, I'm still in bed with Pixie beside me. Pain killers devoured and taking pleasure in the pale blue Sussex sky.

Long Thought Two:

The trouble with pain and other things of the body.

The largest marginalised group in most societies is disabled people. I don't feel I could be bothered to find statistics to back up my statement though I know it to be broadly true.

And inside such things as dry statistics is the reality of living with impairment, pain and disability. The biggest hurdle for me? The sense of fracture between a disabled and nondisabled perspective, even though we are all human and supposedly – at least in the literal sense of our bodies – may start as equals.

Even that statement is not entirely true because a being, born with impairment or illness or one facing different challenges and barriers arising from their socio-economic position faces imposed barriers. Yes, yes I know. It's all about class war with PP. but hear me out.

A child born with impairment only becomes disabled the moment they face an unnecessary barrier and in childhood most of them are removable through having enough money to sidestep them.

But let's leave that for now because I want to talk about pain and expose an awful challenging reality. Why are the nondisabled so destroyed and crushed when pain seeks or burns into their life, with no thought of who they are and if they deserve it, and why me questions?

What this reflects more than anything is that while you see us, disabled people, paraded around these days, like a type of celebrity freak, there's very little of our true and complex stories. We remain vehicles of pity for others to feel sorry for, or targets of hate that would be better culled, euthanised in acts of chilly pseudo-compassion. Better for us, better for the state. Impairment and pain are expensive.

Yet hang on a minute. Where were we a minute ago? Oh yes. We were and are supposedly human beings and because we are human beings, we are exposed to the whole array of breakdown and illness. You would think that the covid epidemic and its longer underrepresented effects might have caused more questioning about the previous status quo, the assumptions that assert the opposite and maintain a vague idea of our ongoing invulnerability. Someone down the road might get MS. The girl in the next town might have cancer and be on a fundraising site. Yeah poor things, you think and maybe donate the odd fiver.

What on earth would make you think that things might change? And leaving aside impairment at the personal, and disability at the societal, what about pain?

It is of course the great leveller.

But I'm not here to encourage some indulgent pity-porn feasting. First you accept it, as I said before, the awkward friend, the often unwanted, refused and terrifying friend. But certainly one who won't go away with any schoolboy magic.

Then often comes the suffering pilgrim wide-eyed at the altar of medical science. A pleading, begging, pain ridden hope that there is a magic pill. A magic jab, a wizardry of slicing that removes the dreaded invader. Stunned into mumbling wrecks there are no miracles after all. You've got to work at this pal, sorry if others sold you the lie.

The first irony is that the other humans are still resistant to hearing our stories, stuck as they are in the belief they are immune to such experiences. Hey they're really sorry but…it's boring, and, really it's nothing to do with them...

Until oh surprise, it is. And there's the second irony, as they scrabble madly to reinvent the wheel of responses to pain, as if no one else had ever tried and no one else had ever experienced such a thing.

Pain, in itself is an impairment, restricting you at a personal level and then there comes the barriers which effectively say to you everyday if not every other moment: we forgot about you, we didn't expect you here. Why do you want to come here anyway? Go to your special places and use your drab special things, at the very least, get out of our way and out of sight... don't you get everything on a plate anyway? I saw that on social media...

This has been a large part of my life and so it continues. A recent event saw my access needs questioned because someone somewhere failed to engage their brain. I don't know if they had impairments and I doubt it, but they certainly had no lateral thinking or understanding in the general human sense.

Pain is my personal ghost that haunts me to a level that some would find unimaginable. Those making the journey suddenly and sharply will no doubt waver in shock. Does this really happen? Is support really that bad, that lacking?

Yes, it is, is all I can say. Humans hurt, humans break and other humans erect unnecessary barriers. And you'd better get used to it.

It won't surprise you when I say that I feel one answer is for the media to get brave, to find their own bloody triumph over their own tragedy and start letting in the disability story. By disabled writers. Writers with impairments, with chronic illnesses, writers with pain.

I'm not great at maths but I'm fairly confident this is a rather large number of people, a floating moving changing group of people. Not in our tribe today but suddenly you're in it tomorrow? We know the best help, and the best way to hope is to learn from others that have travelled ahead on difficult but also rich ecstatic journeys. An ongoing useful conveyor belt of human experience.

Since the sudden change in my life last August when I experienced brain bleeds and epilepsy, I was plunged into a new level of catastrophic pain, as new impairments fought against each other. One impairment, my medical condition, is infamous for the pain it brings into one's life already. The brain traumas decimate your energy to create sneaky byways of pain you never thought were possible.

The euthanasia brigade, often of limited experience regarding impairment and pain unless it's to a loved one, or of very recent experience, would cry out after such a statement and offer me their magic velvet pillow death as a beautiful way out. I've described my pain and my struggle, what on earth have I got to live for against such horror, they may say sweetly and with the conviction of those coming from a nondisabled non-impaired, likely privileged and pain-free life – with no other ongoing narratives to challenge it.

Sometimes I will yell at such things, that shrink us down, that shrivel human experience almost to a level where there is no point to be born because it's too scary, too risky, it's better not to try. That sounds more like a ridiculous existential crisis to me than any act of compassion.

And in the end after my recent close, so close encounter with death, I will always say. There is my beloved who brings me pink roses. A best friend and the surprise gift of a veggie pie. A day in the sunshine, which even briefly, is a wonder particularly by the seaside, that inculcates relief from pain. My chatty indomitable mother who is 87 years old and came through a tough life, still working as a volunteer in a charity shop, always with a smile and a stubbornness that I have inherited. My garrulous sparrows, which regular readers of my Substack will know obsess me by the day as they have their squabbles on the bird feeders outside my window. Not to forget my cat, the majestic and oh so cheeky Pixie, my mini panther who pats my face when I cry, when pain wins its time of inevitable intrusion.

Pain that may push in, but through whatever means will never it will never, till my last breath, push me out of life and loving my life completely, until the final day comes. You can depend on that.