Aug 29
OcelotJay: The Kitteh Strikes Back
Wow. It's been six years since I last posted an entry. I always was rather erratic and unreliable when it came to blogging, as evidenced by several abandoned independent blogs scattered across the ether; I either had inspiration or a deficit, and without the motivation I would simply abandon these diaries, never destroying them but letting them lie dormant.
Well, I'm back again. Yes, it's yet another infamous return of the Ocelot. How long will I be around for this time? I can't honestly say but it's worth exploring the potential. First, however, I want to rewind and tell you a little about some developments over the last couple of years. They are as much a part of my identity as they explain why I'm back prowling the halls of Zathyus once more.
My new reality
I can hardly believe it but it's been almost two years now since I was initially diagnosed with a diffuse astrocytoma, a type of glioma. It's a low-grade, slow-growing cancerous tumour in my brain, and it popped up entirely out of the blue - well, actually, it's probably been growing there for quite a number of years, all harmless and happy in its little nest of brain matter. Then one day it must have eaten a mushroom and powered up because my brain went haywire. I had a seizure you see, the first in my life, which in itself was a scary experience. Oh I don't remember anything of it, I was rendered unconscious, but if you've ever had a blackout you can appreciate that it's a bit scary to be conscious one minute and then waking up the next feeling drowsy, dazed, and not sure what happened. Having a paramedic kneeling over you probably didn't alleviate my initial shock.
Anyhoo, a quick visit to A&E, a check-up with the neurologist and an MRI later, they confirmed I had in fact had a seizure. The diagnosis? A lesion in my brain. A second MRI with contrast confirmed this and its location told them what it likely was.
For someone who's always been pretty healthy, it would be an understatement to admit I was taken aback.
Initially I was quite strong; I took the news well enough, better than most of my friends and my family, and I was convinced that I hadn't been given a death sentence. I was fiercely determined to fight this thing, and I was elated that the neurosurgeon I was referred to wanted to attack this thing as aggressively as I did.
Well, here's the thing. I wasn't coping, not nearly as well as I thought, and in the end I was left devastated. It was the surgery that finally shattered my fragile glamour of strength. I was naive to believe that I could undergo surgery without suffering for it, to not even consider that having someone crack open my skull, poke around in my brain - the very core and essence of me as an entity - resect a whole 10 CMs of tissue[1]- mostly diseased but, due to the nature of my intrusive tumour, a lot of healthy stuff had to be sacrificed too - that I could go through all that and not pay a price for it.
Oh yes, medicine has made wondrous advancements, but you cannot traumatise the fundamental essence of humanity and not reap penalties. Neurologically I have some considerable deficits - memory being the biggest part affected - but I also suffered in mental well-being. My absence from work cost me in growing social anxiety and a feeling of disconnection from the world around me, even though I was well tended to by family, friends, nurses, doctors and a lot of other lovely people. The surgery itself, apart from the tremendous pain during recovery, a near-miss with some potentially fatal CSF build-up, and a loss of feeling on one half of my head, left me feeling quite unlike myself. That part is the hardest to explain, and I won't endeavour to do so now. Suffice it to say that if you've never had a brain trauma - be it accidental or intentional - or perhaps even one of many mental illnesses that can radically alter your personality, outlook and sense of "self," you are unlikely to truly empathise. I understand this because, truthfully, had I had an inkling of where this road would lead me, I think I would have opted out of surgery. In my ignorance, I was enthused, determined, and angry. I couldn't fathom the ramifications of my decision and although I've been supported quite incredibly, I don't think I ever honestly understood. The experts struggle to understand it, so how could I? C'est la vie.
Back to the present
Anyway, I hope you get the gist. Things have been chaotic ever since my diagnosis, and especially in the wake of surgery. They estimate that the brain can take up to 2 years to heal, so I have about another 3 months of "spontaneous recovery" until it settles down. What that will actually mean for me, I'm not quite sure; hopefully fewer and fewer headaches. These aren't your run-of-the-mill, want-to-claw-my-brain-out throbbing pain. No, these are far worse. My brain is so upset with its trauma that neural pain pathways have developed, allowing the pain fast and easy access to, well, wherever it goes. The doctors haven't exactly enlightened me on how it works - the brain doesn't have pain receptors, apparently, which is why you can undergo brain surgery while awake and feel no pain. The flesh has to be numbed of course, but the brain itself is perfectly fine. My craniotomy was performed using a general anaesthetic because the location doesn't require consciousness to make sure they didn't accidentally pinch something vital but I imagine being conscious still feels weird, even if it's not painful. The head pain I experience now requires a hefty cocktail of painkillers to combat, and it is slowly getting there but progress is slow.
Beyond a hope to return to being relatively free of pain, I have no idea what to expect once my 2 years are up. Looking to the future with hope in my eye and nervous uncertainty in my heart has, for some time now, held me back; I've been so afraid of the finality I'm looking towards that life has slowly passed me by. Recently, with considerable assistance and a lot of support, I've finally started to feel a little bit like my old self. Acknowledging that I have changed and incorporating this disease into my identity has been the most challenging aspect to this, and I have a ways to go but for the first time I honestly believe I can make it.
Therefore, I find myself back to this old haunt, a place I called home for some of the best years of my (relative) youth. I think often of the wonderful times I've had here but I've scarcely graced Zathyus since my last departure. I can only hope and push myself to stick around again, to harness some of the energy and commitment I used to have, even if I have to adapt to my new reality, because in the end all I have are my cherished memories. Time and illness will slowly erode them but I can enjoy this moment because, ultimately, it's all I have.
This moment, this time.
[1] In diameter; I have no actual notion of how much the tissue weighed, its circumference, et al. Ten centimetres might not sound like much but when you consider that they didn't simply remove a 2D layer of brain matter, I find myself wondering just how deep the hole is. My most recent MRI reminded me just how large the hole actually looks from the side, and it shocked me.
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Comment by Helena, Sep 1 2015, 09:25 AM
I was happy to see you posting around the forum again, because I remember enjoying your interactions and contributions on ZNR when I joined the staff there in 2010. For what it's worth, you sound like yourself to me. I'm sure you feel "altered" after all you've been through, but your essence is authentic and your writing style recognizable even to someone like me who has mainly been an observer. Huge life traumas do change us, but maybe they even enhance as well, making us even more who we are than before. All the best to you, Mr. Jay, as you continue your journey.
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1:58 PM Oct 29