This is a slightly edited version of something I wrote to a friend yesterday.
When I was young, I never envisaged living past 40. It’s not that my life was all drug-fuelled and dangerous (though it did have its moments); I simply found the idea of me and forty (plus) to be totally inconceivable. When I was 42, I was diagnosed as having a brain tumour — it was, in and of itself, non-malignant, but, because of its location, could eventually have caused blindness, paralysis, epilepsy, or death (or any combination thereof); and its removal could equally have caused blindness, paralysis, epilepsy, or death (or any combination thereof). Thus, I thought ‘Ah hah! My calculations weren’t so far out after all,’ and prepared myself for death. Despite the surgeon’s warnings, I knew that only complete recovery or death were possible — I never entertained for one second the mid-way options. I told anyone who needed to know it that I loved them and, as the expression has it, set my house in order. From total thanatophobia, I achieved calm and acceptance.
Only then I survived; not only survived, but made a full recovery (apart from a somewhat bumpy skull and jangled nerves in that area). I was supposed to be in hospital for three weeks; I was out in four days. I was supposed to need three months’ convalescence; I was back at work in a month. I was supposed to have visual disturbances for any number of weeks; they were gone in less than a day. I’m not Superwoman, nor were any miracles involved. I think the reason for it is that I simply didn’t want to remain ill in hospital any longer than necessary. I saw people enter the ward, under their own steam, laughing and joking with friends, clearly able to function unaided — but the minute they removed their street clothes and donned the hospital gown, they became patients, unable even to pour a glass of water for themselves, and calling on the poor, harried, over-worked nurses to do everything for them. My attitude was different — I had a thing in my head that shouldn’t be there; it was causing me pain and I wanted it excised. I felt the same way towards it as I had done towards a wisdom tooth some years earlier.
I’d had the tumour for at least eight years before it was diagnosed — I’d had increasingly debilitating symptoms for eight years so we must assume the tumour itself, in some itty bitty, non-intrusive form, had been there longer. During that time, I’d endured indescribable facial pain. Doctors had put it down to trigeminal neuralgia, to eye problems, to grinding my teeth, to stress, to… all manner of things, other than a meningioma (and yet, ironically, I had — after only a couple of years of symptoms — asked a neurologist if it could possibly be a brain tumour, and he’d laughed at such a ridiculous notion… ahem!) Anyway, for all those years, I was told to take paracetamol (which has no analgesic effect as I also have Ehlers-Danlos Syndrome, and, as my fellow sufferers will tell you, paracetamol is as much use as toothache… or face ache… or whatever I had.) And as the pain continued, I gradually lost ‘me’: I lost interest in how I looked, in sex, in how others perceived me. For the last four (?) years of it all, I was simply existing, going through the motions. I never dressed up, never wore make up; never wanted to go out; I brushed my teeth and washed my hair only because the alternative feels horrid.
When the tumour was removed, and with it the excruciating pain, I was offered morphine. When I’d needed a strong pain-kiler, all that was available was paracetamol; now I had very slight discomfort (the staples in my scalp felt like a too-tight hair elastic), they wanted to give me opiates? I refused. I never once pressed the self-dosing pump thing or allowed them to give me any oral pain relief (again, I’m not brave, I’m not Superwoman — but after eight years of torment, what’s a little irritation going to do?) and this, probably, goes some way to accounting for my early discharge.
During the first week after I left hospital, I had a lot of visitors, and they all, each and every one of them, said ‘You must be sooooo happy!’ Was I f**k!? I was not happy. I was depressed. I was bereft. The pain and my fight against it had nourished me and kept me alive. What’s more, I felt I should have died. I’d prepared myself for it; I’d accepted my mortality; it was what was supposed to have happened and I felt cheated. This wasn’t some sort of survivor’s guilt; this was anger, rage, disappointment. I’d have to go through all that coming-to-terms malarky anew one day. And when the fury abated, there was indifference; total, overwhelming, all-consuming, vicious indifference. I’d never been properly depressed before — or since — although I do suffer a little bit from SAD, but that’s more a vague lethargy and disinclination to do anything. This was like being surrounded by a smooth, high, grey wall. Churchill spoke of his black dog, but at least a dog has idiosyncrasies and quirks. My wall had no individuality to it. It was featureless and impenetrable. In truth, it may have been possible to find a door, or to scale it, but I just couldn’t be bothered; and I resented people trying to peer over it and invite me back into their world. I felt no sadness — but equally no happiness, no affection, no love. In all probability, it was caused by the drugs still floating around in my system — and I had had people prodding and probing my brain… Mercifully, it was short-lived — my heart goes out to those who are so afflicted week after week, month after month, year after year — and after a week or so, I got over it… and I realized I was still alive so probably ought to make a go of living.
That’s when I started to reassess my life and general situation. It wasn’t, as that last sentence implies, something I just did; it was a slow and steady realization, which, less than a year later, led me to move to Catalonia.
And having recovered, having re-found ‘me’, I had a new lease of life, and every day was — and still is — a bonus. (Not literally — my life expectancy is now the same as anyone else’s.) Around 10 years had passed by this time. Whilst I’d been in stasis, my friends had got older around me. I might have aged physically, but mentally, emotionally, psychologically, I was still where I was before I got ill.
On my fiftieth birthday I woke up with such a sense of elation. I was fifty. No, not fifty — fifty! It was fabulous. It was the most wonderfully silly thing anyone could ever have imagined. Me? Half a century old? It must surely be a computer error. My peers were all lamenting its arrival or proximity; I was celebrating it. I have been celebrating it — gleefully, joyously, rapturously — for the last sixteen months. And I fully intend to go on doing so.
I do not think I am a femme fatale nor even particularly attractive. In photos, I normally look like Quasimodo’s uglier sister, although, once in a while (in the ones I put on the internet), I look so incredibly hot that I make myself drool. My friends, who’ve had the luxury of ageing gradually accept their wrinkles and grey hairs and creaking bodies. I don’t. The EDS means I’ve had the aches and pains all my life, so nothing new there then. Dye covers grey (not that I have many: the women in my family have one of two genes — a skinny/grey-before-forty gene or a fat/dark-till-death gene — guess which one I inherited?); and if/when I can afford it, I’m not ruling out a gentle face-lift or similar. I like dressing up; I like showing off; I like not acting my age; and as a result of all that, I love being my age. I love being me.