“High mortality rate”, “subarachnoid hemorrhage”, “intracranial aneurysm”… these are the words that resonate for long after leaving the doctor’s office; and, regardless how many more professional opinions you seek, the verbatim repetition of the initial diagnosis only burns the definitive outcome deeper into your psyche. So deep in fact, that you learn to live with it, never think of it, simply wait for it – an always ending life.
I can’t remember much of that day, the first day of what was meant to be the start of the countdown of the rest of my days. It’s mostly a blur. How could it not be? Of course, some will argue that such a day of such profound importance should be forever carved into my memory. Yes, in a way, it was; in the sense that you can never forget the overwhelming news slapping you so hard that, for a moment, you feel like having lost the connection to your physical self. Other than that, I guess that the day faded to oblivion as nothing feels able to break through that morbid attachment to the approaching end.
The end; the finale; which, somehow, suddenly becomes an integral part of every day. Your every day. No one else’s. Just yours. For everyone else, life is what life was the day before; the hour before; the minute before. For you, life is this moment now, just now, as the next one may never come. For you.
“Five percent”, “loss of independence”… these are the nails on the coffin, the words that will accompany you for the rest of your days: the survival rate and the condition. A 5% chance to cheat death, a 5% chance to a few extra years, permanently disabled.
Funny thing the brain. I remember watching so many documentaries and researching studies about how everything in there works. I say funny, cause… ask ten scientists and you’ll get about a hundred different opinions on how the brain works. Memory alone has everyone baffled.
That’s not why I said it’s a funny thing though. It’s funny cause during my lifetime, the brain was the only thing I would trust. Of course, I would say so now that I know it’s that which will end me; but, I was saying the exact same thing ever since I exited my teens. The brain.
I was never the athlete, never the model. But, I’ll be damned if I ever let anyone claim they were smarter than me. Studies? Street smarts? It certainly had to do with my competitive nature too. I won’t argue that. I would never leave an argument or a problem though. Not ever. My belief in my brain was fathomlessly immeasurable. It never disappointed either. Not me and not anyone who believed in me. Not once.
And then, curiously, timidly, but shockingly, frighteningly, the first symptoms surfaced.
I shall never forget the first manifestation, the first time I lost the ability to focus on a single item, the first time my brain tried, but ultimately failed to combine the two idols of the same object, the two received images from my eyes, into one. Diplopia.
I had no idea what it was. I could not think straight. I was frightened. I was terrified. I felt nauseous, about to go into vertigo. However, the sudden, flashbang-like, piercing pain kept me conscious. I closed my eyes and then opened them again. Then, I closed them and kept them closed for longer than before. Then, again. And, again. And, again…
It was my first year in the university, some 2.5 thousand kilometres away from home. I was in my room in the campus, my compatriot housemate was out for the evening and I had been studying for the upcoming end-of-term exams. I remember stumbling out of my room blindly, touching the corridor walls to guide me to the bathroom, where I forced my head under the ice cold shower.
I had learnt to live with migraines. My first migraine attack was when I was still in primary school, about 7 years old. Since then, I had thousands in varied frequency. As much as I had always been impressed with my own brain, that much and even more so, I had been tortured by it. But, cold water always helped. The colder, the better.
Not that time.
Again, I walked back to my bed, turned the lights off and, with closed eyes, prepared myself to either slip away, or, worse, to live in darkness. Or, I tried. How could I ever prepare myself for any of that? Life in the dark was and still is one of my greatest phobias, if not my absolute worst.
That all came to pass though. Medical examinations revealed nothing frightening, drugs were administered, advice was given, close observation was suggested and life resumed.
It never really did. It just toyed, as it does.
During national service, after a series of unfortunate events and misinformed decisions from those who should have known better, I was put under the microscope. Which is the closest metaphor I can think of. Blood tests, adrenaline tests, crash tests, exhaustion tests, anger tests, balance tests, psychological evaluation, heart, kidneys, adrenal glands, veins, arteries, eyes, … the brain.
There we were. After ruling out everything we could do something about, we had to test for the one thing that was left on the list.
It is not that the MRI was not enough. The rest of the examinations were performed in a hopeful attempt to rule out the findings. Hopeful, but irrational. Even I knew it.
No one knows about this. Well, no one knew about this. Now, you all know it, if you’ve reached this far. But, my friends don’t know, my family doesn’t know, even that one person I would give my life to, doesn’t know.
Honestly, what do you do? Do you really walk to the people who care for you and say … “hello, I’m a time bomb”? How do you even phrase that? “Mom, dad, don’t be alarmed if I someday collapse and never get up again; it’s to be expected”? I mean, how do you sum up your courage to utter such words? “Love, you know, there’s a possibility that one day I’ll just die, right there, in front of you; you just have to learn to live like that, with this possibility that the dreams you make for us, well, you can’t have them”.
Why now? Why here?
“5 years”. That’s the statistical fact that you find yourself returning to, with every passing day. The sum of days that statistics, this scientifically agreed upon and accepted notion, allows you to hope for. The chain of todays that link after broken link counts down the days to obliteration.
Anyone recalls what was the year I left my motherland to fly over and live alone in the UK?
…four days after my 32nd birthday. May 16, 2011. I had exhausted my statistical hope. I had run out of days. I chickened out. I left.
I found the lamest excuse in the search for employment abroad and I left everyone that cared for me in order to come die alone; in hopes that it will hurt less. Or, in hopes that, if my luck was to fall into that 5% statistical hope of survival in a state of permanent disability, people would not find me, forget about me, live without me, not suffer because of and with me.
Who would have known? Even I had started investing in this crazy thought, this unjustifiable hope, that whatever it was, I had defeated it, survived it, annihilated it, outlived it. Till about 3 weeks ago. When, out of nowhere, it dropped me.
I thought it was the end. The end of everything.
I was not wrong. That’s exactly what it is. It just mimics life. It toys with me. Like she does.
It hasn’t left me ever since. It’s a constant reminder of an imminent end.
That’s why these words are put together. After I go, hopefully, the ones that care will know that I knew it was coming. I lived my time as I wanted. Next to them. And, I only left when I was told to expect the worst to come.
I wasted a couple of years away from them. I thought I’d be gone sooner. This I regret the most.
In case this doesn’t end me, don’t waste your lives taking care of a disabled son, brother, whatever. I know you’ve loved me. There hasn’t been a single moment of any given day through these 34 years that I haven’t felt it; beyond all your mistakes, arguments, harsh words… I hope, despite the times that I was the worst I could be, that you too have felt my undying love.
Don’t give no more. Let me go, if it comes to that. And, live.
Till the end of everything… I love you.