It doesn’t feel like anything else. I feel like someone who has been unconscious for years and has suddenly woken up to another reality, another world I am unfamiliar with. As everything else is so new, so alien – and since I cannot remember the past – I don’t now know what to do, or how to handle that strange feeling of emptiness inside me.
It is not similar to what I felt after the death of my father who passed away in my arms at the end of a protracted struggle with another illness. Yes, my father died at a relatively young age; still, he had lived life to the full. We knew why the illness chose him; he had called it upon himself. He had turned a blind eye to doctors’ advice and opted for a prolonged, slow suicide. But he wasn’t five-and-a-half years old. The life he had was probably longer than the life he would have had.
Luca, on the other hand, was not there yet. As the famous Turkish poet (indeed a close friend of my father) Cemal Sureya said, “every death is an early death”, but he has not had enough of life to be able to say “keep the change”. Not to mention the fact that he did not give up on the future voluntarily. There was no known cause for his disease. The angel of death, who selects one among 1 million children every year, had decided to fill his annual quota with him.
Thus, what you feel doesn’t look like what you would feel when you lose somebody you love, even one of your parents. Since the memories you have collected are limited, when you close your eyes, what punctures darkness is not happy moments or memories. The last few weeks, the last day, in fact the last night – that indescribable, excruciating last night – creep through every single hole, like a lethal chemical gas, filling the void and asphyxiating every bit of emotion it encounters. It leaves only an eviscerated, soulless shell behind.
Of course life goes on. You don’t want to stay in bed the whole day. You cannot sleep anyway. Alcohol, anti-depressants, or different combinations of these don’t work. You don’t want to stay alone, because whenever you do, the chemical gas returns. Just for the sake of living, you are obliged to get by. You try to distract yourself and build a routine that reeks of “the normal”.
And you do. You spend time with close friends who won’t make you tell the story from the beginning and don’t repeat clichés like “words fail us” or “there is no way to describe your grief” (not that they are wrong or you don’t appreciate them; they are a thousand times better than utter silence); you eat, drench your suffering in alcohol, watch the World Cup. Then, suddenly, while chatting about something trivial, you find yourself talking about him. “He loved football too. When he grows up, he’ll play football probably”, you say, and take a pause there. What did I say? Did I use past tense? “Loved football?” Did I say, “when he grows up”? But he won’t grow up. And you reach for another bottle of beer.
Even when you realise you are being emotional, in fact simply irrational, your compass is him. You want Sweden to be defeated by England for example. When they concede a goal, you rejoice. Then you remember that only a few days ago, you were rooting for Sweden – how you were explaining Swedish jerseys to him. “Like the Minions. They have the same colours as the Minions”. He laughs, feels a sudden joy. “Minions!”, he says. Grandfather, grandmother, bonus grandmother cheer for Sweden shouting, “Go Minions!” He wants to stand up, to jump. He cannot. Because he cannot stand up.
When that memory interrupts your fragile routine, your attempts to reconstruct a new “normal”, you collapse. You are instantly detached from the present, your surroundings, even the whole world. If your friends are close enough, they notice it and bring you back to the present, quietly. You return, until the next interruption.
Some time after, you start reflecting on some of the things someone you care about told you, “slowly, step by step”. Or the gentle reminders of his doctors, a mantra you have memorised over the years, “one day at a time”. That all sounds reasonable but weren’t we supposed to get rid of this when all is over, one way or another? Weren’t we going to be able to re-establish the link between the past, present and the future? Why can’t I still make plans about the future? Why don’t I want to remember the past at all?
The present? Well, it is the incarnation of Dante’s Inferno. I have already passed through the door upon which the words “Abandon all hope, ye who enter” (Lasciate ogne speranza, voi ch’intrate) are inscribed. I have started travelling down the concentric circles of hell. I have been conversing with sinners and damned souls hoping to come to terms with anger and the feeling of injustice. Knowing of course that no matter what I do, I cannot bring him back.
As I know that I cannot go back home, that there is no home anymore, that I have lost my sense of belonging, the only thing I believed in, the deepest and most genuine love of my life.
“We were never building a future, we were always building a past.” Julie Wark
Leonid Afremov, Recollection of the Past
I wanted to write about “pain” for some time now, both physical and emotional pain, but it was not the right time for it. I wasn’t inspired or perhaps I didn’t have enough experience of pain to write about it
It is somewhat odd for me to say this aloud as I firmly believed until recently that I have generally been a tormented soul since the day my father gave me the Russian classics to read over the summer holidays (I have always blamed him for that). Not that I have been exposed to vicissitudes of life any more than others. On the contrary, I have been quite lucky most of the times, with more ups than downs. So I am, and have always been, aware of the role of agency in the experience of pain, subjectively speaking.
Perhaps I got wiser, and became more immune to my mind’s tricks; or external conditions have changed, to such an extent that the pain and suffering I had experienced in the past have started to appear unimportant, even trivial, compared to what I have to live through in the present moment. This has not altered my “relationship” with agency. Running out of scientific options to appease my mind’s lust for suffering, i.e. therapy, (increasing doses of) medication, I have turned to spirituality, exploring the world of meditation and mindfulness under the wise guidance of mamma. From the work of Byron Katie to the teachings of Eckhart Tolle.
To be frank, and fair to my guide, I have never mastered the art of spirituality as much as others for I have not been immersed in it long enough. Chances are I am still not committed enough. But it helped; it gave me a different perspective on life, and more importantly on my understanding of time. I have learned to enjoy the present moment a little more – a giant step forward for someone as obsessed with the past and the future as me; and I have certainly become more skilled in dodging the tricks of my mind which has never stopped playing the role of sirens luring the sailors.
A series of related incidents or processes, all taking place within the last few months, culminated in probably the worst “present moment” of my life and fundamentally reshaped my relationship with pain and suffering, or better put, the way I see the role of agency in the experience of pain and suffering.
I was listening to a podcast on Very Ape, which is described as “a cosmic conversation about psychedelic healing, consciousness expansion, revolutionary politics, sex and art” by its hosts, the documentary filmmakers Sean Dunne, Cass Greener and Maura McNamara. It was a conversation with Aella, my recent Twitter discovery and obsession, on acid tripping (LSD, mushrooms and all). One of the hosts, Cass, gave me the quote I was searching to begin writing, in reply to Aella who was describing one of her “trips”. “Pain is just is; suffering is optional”. “Suffering is saying no to pain”, confirmed Aella.
The contexts were completely different of course; so were the experiences that were talked about. And yet, there was still something that rang true, something that seemed to fit with my own experience of pain and suffering.
On the one hand, they were, generally speaking, right. Suffering is optional; we have the power to define our relationship with pain, what we make out of pain. We may accept it as it is (that’s what the gurus of mindfulness would tell you too); or we may accentuate it, aggrandize it, by turning the ephemeral into the perpetual, the microscopic into something monumental.
On the other hand, this did not sit well with the experience of physical pain, especially pain which is not one’s own choosing. Like that of a small child – who happens to be your own – who has to undergo a very painful treatment to beat an almost invincible cancer. Having no alternatives – since there is no such thing as painless, “peaceful” death – or having the choices made for him by his parents who have no clue as to what is best for him.
Once the choice is made, and the moment of reckoning comes, you feel physical pain too, in anticipation of his pain, on top of the emotional pain, of having made the choice, a choice which would lead him to suffer. You watch three nurses and a doctor preparing syringes upon syringes of morphine and other painkillers. The doctor explains to you that the pain he will have to endure will be excruciating, hitting around the 15th minute of the injection, peaking at the 18th, then hopefully dying down. You try to picture it; you can’t. And no wonder you can’t, for the pain is indescribable, almost ineffable. He stops doing what he is doing; his body is crawling, taking the proverbial fetal position which has come to symbolize, ironically, both physical and emotional pain; the nurses rush to the syringes which disappear one after another; and the little one starts experiencing something that is not so dissimilar to that described in the podcast. He becomes high, drugged, still in pain, mixed with nausea, to the point that the two become identical, and yet “still” in pain. So tangible that you could almost touch it.
The pain subsides; yet the “trip” is not over – not for him, not for you. As he passes out, your physical pain turns or merges into a consuming emotional pain. And tears.
At that fateful moment, yes that particular “present moment”, you ask yourself “what did he do to deserve this?”. What did we do to deserve this? What did I do to deserve this? Can I use the power of agency to lessen my suffering caused by his suffering? The suffering that is caused by a very real, palpable, physical pain? Does he have the option to say no to pain? Do I?
Just a string of meaningless rhetorical questions…
A dark hospital room illuminated only by the dim light emanating from the IV drip he is attached to day and night, the silence interrupted by the odd beeping of the machines when the quiet flow of the “toxic cure” is blocked. A frail, pain-stricken body tossing and turning in bed restlessly, hugging a brown or blue monkey in search of a sense of security.
The concomitant loss of the sense of time and space. The past reset since that fateful day when you walked into the room where you are told by a caring doctor that the “entity” they discovered is malign; the future vanishing into thin air when you realize that all you can do is to go through one day at a time; eternally trapped in the present, trapped into now and here, trying to make the best out of it, or to avoid the worst of it. A calendar dotted not by festive days, but by weekly or monthly intervals, depending on the type of treatment he is currently on, in between the start and end days. An episodic existence indexed on “good” times and “bad” times, an itinerant life where “being home” is a luxury you cannot always afford.
Notes detailing which medication needs to be given when and at which dose, a list growing uncontrollably as side effects of chemotherapy kick in; text messages between mamma and baba outlining the “symptoms of the day” or offering a tally of the quantity of food and liquid he has consumed, accompanied by a smile when the figures are relatively high; the unique joy you feel when the number of meds he is on is going down while the quantity of food he consumes is increasing, sometimes to the point where you enjoy the “very bearable lightness” of not counting.
The dismal realization, which mostly hits when you are alone or while watching the little angel sleeping, that this is his “normal” life, the only life he has known – a life where he can only attend birthday parties of his friends or take a swim in the pool when his blood counts allow for it; where plasters or bandages covering the countless punctures in his frail body turn into an object of obsession he cannot live without. The intense feeling of revolt and the profound anger that gradually become the “wallpaper” of your existence, running in the background of everything you do; the often unfulfilled quest for compassion – not differential treatment or pity. Just pure, simple compassion.
All this combined with a firm determination to persevere against all odds, defying statistics and resolutely chasing miracles. Encouraged by his superhuman strength, his “epic” struggle; rewarded by his boundless happiness and his disarming smile; motivated by his eagerness to turn every ordeal into a game where the good guys always win, where the Green Ninja defeats the Snake or the Great Devourer, where Minecraft Alex triumphs over the Skeleton or the Zombies. A hero who doesn’t mind learning to swallow pills while his peers play hide and seek in kindergarden; a little big man who thinks being bald is “cool”; a “peaceful” warrior who ponders over his next lego project while surrendering his teeny-weeny finger to the nurse for his 1500th blood test.
A boy with a will to live like there is no tomorrow. Maybe there is no tomorrow. Maybe he knows something that we, adults, don’t know. Maybe he has a mission, a purpose to show us all that life, however fleeting it may be, has a meaning that transcends time and space as well as the worldly and the spiritual.
For us, his family, he simply means “love”. But a love like no others.