I am tired

Your wheels are turning but you’re upside down
You say when he hits you, you don’t mind
Because when he hurts you, you feel alive
Is that what it is

Red lights, gray morning
You stumble out of a hole in the ground
A vampire or a victim
It depends on who’s around
— Faraway, So Close! U2

I am tired. More than anything else, I am tired. Of not sleeping. Of trying to drench the pain in meaningless activities. Of the rage. Of idiots. Of “vampires and victims”. Of having to come back to Sweden. Of Sweden. Of Tiny Toon. Of seeing him wherever I look. Of knowing that he is not coming back. Of writing. Of crying. Of not being able to cry. Of the absence of choices. Of not having the freedom to leave, to cease to exist. Of you. Of myself. My wheels are turning – I guess – but I am upside down.

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Homeless

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.

💚

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Our big little man

The roller-coaster that we call our life has presented us with a few surprises since we last posted here. Slowly, but resolutely, Luca recovered from his first chemo and even managed to receive a second, reduced, dose without suffering much.

As we were preparing to head off to Barcelona to start the immunotherapy, we got the news from that his disease is not considered to be stable enough to start solo immunotherapy, that the only available option now is a combination of chemotherapy and immunotherapy which he would be given as “compassionate use” thanks to his doctor’s good relationship with Memorial Sloan Kettering in New York (this is a brand new trial available only in New York). We were not sure he could body handle such a heavy treatment, but he was doing so well that we could not give up. His doctors in Sweden concurred. We had to give it a try.

And we did. We spent three weeks in Barcelona, where he had the first cycle of the so-called “combo”, five doses of chemotherapy and four doses of immunotherapy. The latter in particular was extremely painful, and combined with a mixture of morphine and other painkillers and antihistaminics, it knocked him out.

But our little big man was strong. Contrary to our and his doctors’ expectations, he weathered the storm quite smoothly, building legos, playing “bad guy and police”, running around and devouring unquantifiable amounts of sushi.

There have been moments when we have been getting close to losing hope. We know from past experience that the disease is a sneaky little scoundrel who likes to play games. So we are not getting carried away. But just as we are about to set off for Barcelona for the second cycle, we feel a little excitement that was not there before.

We owe it to him. We owe our will to fight, our strength, our “everything” to him.

Please continue keeping us in your thoughts and prayers.

P.S. The doctors will decide whether the treatment works after the second cycle. In case we continue the treatment, we will need help to amass a moderate amount of money to finance our expenses and the rest of the treatment. Nothing needed for now.

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“You don’t have a home until you leave it and then…”

Although they were contemporaries and lived in the same city for a good chunk of their lives, I have not been able to find out whether Jean-Paul Sartre and James Baldwin met in person. There is anecdotal evidence that Baldwin did not appreciate his early mentor, Richard Wright’s, friendship with Sartre and Beauvoir. But his name is mentioned alongside the towering figures of “Black existentialism”, e.g. W. E. B. Du Bois, Ralph Ellison and Richard Wright himself.

What brought these two names together in my mind was the angst of going back home, or to the place I considered my home until quite recently. It was the dread of returning to Lund after three “love-filled” weeks in Barcelona, the profound emotional distress that the once distantly caring Sweden nurtures in me, that led me to a passage in Baldwin’s 1956 novel, Giovanni’s Room:

Would you rather go to Italy? Would you rather visit your home?” He smiled. “I do not think I have a home there anymore.” And then: “No. I would not like to go to Italy – perhaps, after all, for the same reason you do not want to go to the United States.” “But I am going to the United States,” I said, quickly. And he looked at me. “I mean, I’m certainly going to go back there one of these days.” “One of these days,” he said. “Everything bad will happen – one of these days.” “Why is it bad?” He smiled, “Why, you will go home and then you will find that home is not home anymore. Then you will really be in trouble. As long as you stay here, you can always think: One day I will go home.” He played with my thumb and grinned. “N’est-ce pas?” “Beautiful logic,” I said. “You mean I have a home to go to as long as I don’t go there?” He laughed. “Well, isn’t it true? You don’t have a home until you leave it and then, when you have left it, you never can go back.” “I seem,” I said, “to have heard this song before.” “Ah, yes,” said Giovanni, “and you will certainly hear it again. It is one of those songs that somebody somewhere will always be singing.”

While re-reading and reflecting on these words, Sartre famous aphorism – one that my father liked to use as an essay question in his exams – hit me. “Hell is other people”. I am too tired to discuss what Sartre meant by this, but I will, some day. For now, I take it literally. As someone who has devoted his career to thinking about identity and belonging, I am obviously aware that what makes home “home” is family, friends, significant others – among other things of course. And it is true that I have lost many of the ties that bind over the last couple of months. Not that I regret losing them. Several years’ worth of emotional and material investment going down the drain just like that, but, at the end of the day, good riddance. It was meant to be, one way or another. True friends will remain, and I still owe a great deal to those who disappeared or will have to disappear soon, for being there for me when it mattered.

And yet, as one of the protagonists in Baldwin’s novel put it, “home is not home anymore”. Will I be able to give Sweden another chance? Will Sweden give me another chance? I don’t know. Do I have the energy to start over? Am I willing to set out on yet another journey to find a new home? I am not sure. I am old(er) and I am tired.

Does one need a home? Or can the longing for home be replaced by ever-changing, temporary homes, where loved ones can be found? Now, these are not rhetorical questions.

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Agua con gas

Agua sin gas – the Spanish version of “still water”. The staple beverage of myriad cultures, one that goes with every meal, at lunch or dinner unlike carbonated, sparkling drinks which are believed to corrupt the savour of the meal. Pure and healthy. To be consumed in large quantities if you want a fit body. Colourless, indeed transparent. “Still”, as the English term implies it. Calm, serene, peaceful.

Agua con gas – the Spanish version of “mineral water”. Popular in Europe, the default option in several countries when you order water. Rich in minerals, “impure” as it is processed (i.e. carbonated). In non-sparkling-water cultures, it is thought to be healthier, helping digestion, though this is largely a myth. To the contrary, since it is acidic, it may cause bloating if you have irritable bowel syndrome or reflux. To be consumed in moderation. Colourless, and to a certain extent transparent, though certainly not calm or peaceful. Bubbles rise, erupt, disrupting the serenity of the liquid.

Lund is agua sin gas. Still, silent. Empty, clean streets; respectful drivers. Pure and healthy. Fitness, yoga, massage and all other forms spirituality, uncorrupted by religious dogma. Melancholy, loneliness, isolation. A welfare state that takes care of every denizen. A culture that values consensus, moderation. Uncontaminated by conflict or controversy. Clumsy when contested, or in the face of confrontation. Somewhat tedious, uneventful. Unhappy, uncomfortable if the orderly flow of life is disrupted. In a way, conservative (socially and culturally).

Barcelona is agua con gas. Active and noisy. Crowded, dirty streets; shouting drivers. Multicultural, harbouring not just students coming from different countries and immigrants as in Lund but also hosting tourists, postcolonial presences and diversity. Full of “life”, colourful. Controversy and conflict woven into the texture of everyday life. Cheerful, mixed, patchy. A culture that is more and more stuck in a tug of war between those who value nativism and those who cherish cosmopolitanism. Orderly in disorder. Relaxed. Yet offers none of the guarantees or protection the Nordic welfare system provides.

“Barcelona is like Lund”, he said, while driving in a taxi towards the center of the city. Nothing could be further from truth, “visually” speaking. “Come on”, I replied. Yet the eyes of the five year old saw differently. Maybe because it was his way of saying he likes it.

Later, “there is nobody in the playground”, he said. “Isn’t this good”, I replied. “Do you want crowds?” “Hmm”, he said, smiling and nodding affirmatively.

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A life like no other (in pictures)

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When you are attached to IV pumps which release the “toxic cure”, and you feel nauseous and weary…

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There is not much to do other than playing Minecraft on i-pad or building legos…

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You eat whatever you find, hoping that he “eats” too while empty cups and plates are staring at you… You feel blessed when Barncancerfonden (The Cancer Foundation) brings good food every Wednesday…

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You pass through “children’s books” (!) that explain cancer to 5-6 year olds in a way they could make sense of it… And adult books that try to teach you “how to live with cancer”…

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Ending up in “sköljrum” (the special rinsing/cleaning room) to leave the urine and sometimes other bodily secretions of the loved one…

You hear Louis Armstrong’s unmistakably raspy voice in your head “and [you] think to [your]self what a wonderful [life]” this is.

 

Polluted by memories

Like everyone else, I have favourite movies, directors, writers, songs and song writers, and I keep returning to them in a cyclical way, not regularly, without following a particular routine, but often enough to discern a pattern.

If you happen to know me in real life or follow this blog, you must have already noticed that I am quite fond of Bergman (not so much as a movie director as what I would call a philosopher), Calvino (in particular his Invisible Cities), Bukowski (the poet, not the writer, a qualification most literary critics would deny him), Camus, and most recently Eddie Vedder – an obsession which is bordering on the pathological, but that deserves another post – to name but a few.

I know, a very eclectic list of strange bedfellows. There is thread that runs through all of them however, and countless others that I have not cited here. They are all haunted by loneliness and belonging, space and time (cities, past-present-future) and the meaninglessness of life. As I sip my Staropramen alone in one of Lund’s landmark bars, Ariman, I’ve been pondering about how we mark the places we live with memories, some good, some bad. Polluting them, so to speak – since good memories are more similar to butterflies than turtles; they never last long, in most cases leaving behind more misery than joy.

I remember the first time I came to Lund. It was 2007, as part of a research network established by a Swedish colleague who used to live in Turkey. We were staying at the good old Duxiana (Thomas had not gone bankrupt back then), having fika next door, at Coffee Break. Call it getting old or tired, I thought I could live here. For a while at least. And I did. I came back in 2009 and spent three months here. I loved my friends but I also loved solitude. I was in the midst of a protracted and painful process of making peace with it anyway. So I returned.

I soon realized that this was not a place to “die” if you are alone, without a family – of sorts. Then he happened. I did have a family “of sorts”. Then he became sick. I had to be there for him, no matter what. In any case, I had nowhere to go (back) to.”

Time to revisit Calvino I thought: “The inferno of the living is not something that will be; if there is one, it is what is already here, the inferno where we live every day, that we form by being together. There are two ways to escape suffering it. The first is easy for many: accept the inferno and become such a part of it that you can no longer see it. The second is risky and demands constant vigilance and apprehension: seek and learn to recognize who and what, in the midst of inferno, are not inferno, then make them endure, give them space.”

I chose the first one. I adapted; acclimated myself; I “became such a part of” the Swedish way of life that I could no longer see the inferno I was living in. When I did, I compared it to the other infernos I lived in, and there was no comparison. My inferno was everybody else’s Eden. A promised land that took good care of me and my son, that appreciated my work, valued equality and freedom more than any other place I’ve been to.

And what about my part in the creation of the inferno, I also said to myself. Inferno is something “we form by being together”, wrote Calvino. He was certainly right. I had made choices, not all of them right or conducive to my personal Eden. So whatever the inferno was, it was also my own doing. I was the one polluting Lund with bittersweet memories. Yes, a life spent in between home and hospital was not particularly sweet either, but there were moments to enjoy, to cherish, before everything got worse. Have I made the best of those fleeting moments? I am not sure. As Eddie Vedder would say, “never been too good at happy endings” – or enjoying “happinesses”.

When the first strategy didn’t work, I opted for Calvino’s second suggestion, seeking and learning to recognize “who and what, in the midst of inferno, are not inferno” trying to make them endure. He definitely was one – “the” one. There were others too; but they disappeared one by one. I found new ones; they weren’t enough. The city of my dreams was polluted beyond redemption. And the pollution was getting thicker and thicker; the air too difficult to breathe; the places I frequent too contaminated by bad memories to purify.

Yet “the” one does not let life go. The precious one who gave birth to “the” one does not let “us” go. Living (in) the inferno requires “vigilance and apprehension”. I have neither of them. I have nowhere to go either. I have no will to go and start over…

“So I imagine in a month… or 12
I’ll be somewhere having a drink
laughing at a stupid joke
or just another stupid thing
and I can see myself stopping short
drifting out of the present
sucked by the undertow and pulled out deep
and there I am, standing
wet grass and white headstones all in rows
and in the distance there’s one, off on its own
so I stop, kneel
my new home…
and I picture a sober awakening, a re-entry into this little bar scene
sip my drink till the ice hits my lip
order another round
and that’s it for now” (Eddie Vedder)

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On Swedishness, stoicism and drama queens

Stoic, n. and adj. “One who practises repression of emotion, indifference to pleasure or pain, and patient endurance”… Drama queen, n., “A person who overreacts to a minor setback or who is prone to exaggeratedly dramatic behaviour; (also) a person who thrives on being the centre of attention.”

The way they are defined by Oxford English Dictionary, almost antonyms, right? If you use them to depict the cultural characteristics of a particular group of people, they certainly are – polar opposites that represent two very different mindsets, perspectives on the world and the vicissitudes of life, and on how to cope with them. I am sure some of you know the orientalist binary oppositions of thinkers like Montesquieu between North and South, which associate all that is good with the North and all that is bad with the South. “As you move toward the countries of the south”, Montesquieu writes in The Spirit of the Laws, “you will believe you have moved away from morality itself.”

Well, we should definitely “render unto Caesar the things that are Caesar’s”; these stereotypes have had an amazing life span, still continuing to shape the way we think about peoples and their cultures. Individuals too. We tend to praise stoic endurance and self-sufficiency, at least in more individualistic societies. We associate it with strength of character, freedom, a prerequisite of emancipation from oppression, however defined. And there are very few places or contexts where “drama queen” would denote something positive. Who likes needy, noisy people? Who enjoys the company of people who crave for, in fact as the OED claims, “thrives on”, being the centre of attention?

Nowhere more so than in Sweden! Being a Swede means being self-sufficient, silently enduring, private… Avoid confrontation at all costs – “lay low, keep a low profile” as a friend just told me. It is no coincidence that the two words you learn first when you move to Sweden are lagom (everything in moderation; just the right amount) and jantelagen (the Law of Jante which promotes modesty, or a belief that individual achievement and success are not things to be proud of – you’re no better than the others!).

Now if you are not familiar with my academic work, you may think that I am reproducing the same stereotypes here. Far from it. Cultures are historically and socially constituted; they are not homogeneous, and of course they are subject to change. And yet, in each and every society, at any particular point of time, there are general tendencies that you need not ignore – or you could, at your own peril. In today’s Sweden, the dominant tendencies you are expected to abide by and respect are those I have cited above.

My dear friend, the historian Lars Trägårdh, has called this “the Swedish theory of love”. In a brilliant article he and another dear friend Henrik Berggren have co-authored, “Pippi Longstockings: The Autonomous Child and the Moral Logic of the Swedish Welfare State”, they define it in the following way: “…the Swedish theory of love posits that all forms of dependency corrupt true love. Only mutual autonomy can guarantee authenticity and honesty in human relationships.” Lest be misunderstood, this is of course a historically rooted praxis that marks the institutions of the Swedish welfare state, not an essential-peculiar cultural idiosyncrasy: “the primacy of individual autonomy has been institutionalized through a plethora of laws and policies affecting individual Swedes in matters minute and mundane as well as large and dramatic.”

Why this conceptual, semi-academic, musings? A knot in my stomach. Yes, you have not misread it; this is all because of a knot in my stomach. A profound sense of indignation – feeling victimized and helpless; knowing that whatever I do or say, under the current circumstances, I will “bury myself deeper” (again referring to the words of the friend who wisely suggested me to lay low).

For some time now, I am losing all the battles I am engaged in, and the funny – no tragic – thing is, I haven’t started any of these battles. Yes, I am a fighter; I would not avoid conflict if I believe I am defending a right cause (I may be wrong of course but that’s another question). And yes, I have not always picked my fights wisely in the past.

Not so much recently. I fight cancer and I fight the current government in Turkey; that’s all!

I know that, as the wise Byron Katie once noted, “defence is the first act of war”. But surely defending your rights is not? Or is it? Should I turn my other cheek when I am slapped simply because I am surrounded by a cultural environment that does not condone any kind of confrontation?

Rhetorical question. In Sweden, I should. The only thing I can do is to avoid the slapping to turn into whipping, or beheading. All in the name of higher values that are hardly upheld by the majority – a “secret” that everybody knows. And do not ever refer to extenuating circumstances; you are just making up excuses for your acts that defy the accepted norms. You are being a “drama queen”. Shut up and endure. Stoically. Like a proper Swede.

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Trapped in Sweden

I came to Sweden several times between 2007 and 2011, even spent a few months working in both Lund and Malmö. It was only in September 2011, however, that I have come to stay for longer than a few months, initially for a year, without having a clue that I would end up settling here. Sweden had never been in my map before as a place to put down roots. If I were ever to leave Turkey, UK was by far the most likely option.

And yet I ended up in Lund. I had come to terms with my arch-enemy, loneliness (at least so I thought), so it wasn’t that bad. I loved my job, my colleagues, the tranquillity, and didn’t miss the place I was born and raised in that much. Then came the notorious Swedish winter; not so much the weather but the heavy, profound loneliness. The hefty darkness that would weigh on even the most “depression-proof” soul. And frankly I was not one; I had my fair share of depression or darkness, both literally and metaphorically speaking. But I knew how to rise from the ashes like the mythological Phoenix, with renewed vigour and appetite for life. Still, there was something different, something indecipherable about the Swedish winter and the loneliness that accompanied it.

That is probably why, my early serenity notwithstanding, I did not hesitate to apply for a job in London when I was invited to do so. I was determined to do my best and leave if things worked out. Well, things did not work out, in the most peculiar way and at the end of a two-months long marathon, the position was withdrawn and I stayed in Sweden. I guess that was February 2012.

Less than a month after, I met someone who gave me the most precious gift of my life the following year. You know him already. So I stayed. I got used to Sweden and the Swedish way of life. I adapted. I even learned to love it. He became the meaning of life, the anchor of my being. I became more attached to Sweden when she took good care of him when the beast struck. During all these years, I had company, I felt loved.

And again during all this time, even when for one reason or another I felt down or was let down, I never blamed Sweden. It was home after all, whatever “home” means in the case of a troubled, rootless soul. Loneliness, too, was my friend now. Sometimes my best friend.

I could not have guessed that all this would or could fall apart like a house of cards. So unexpectedly, so swiftly. The person who brought me here has decided to leave (he had good reasons for doing so); the center he created and took care of so well has been washed away like a sand castle; the love of my life reached the most difficult part of his journey. And the loneliness I believed I had domesticated has chosen to betray me. I was tired – tired of fighting, tired of trying, tired of surviving, tired of rising from the ashes. After all, what was the point?

But I was also trapped. I couldn’t leave. I had nowhere to go; the job that I loved so much – not even a job but a way of life – did no longer make sense, let alone give me a modicum of satisfaction; the new avenues I tried to follow, be it activism or the fake world of social media, ended up in a dead end. I was trapped in a small cellar with the ghosts from my past. I made mistakes.

Now I feel the time has come. If I am to rise from my ashes again, and I seriously doubt I could muster the force necessary to do so, I have to leave all behind. I have to leave Sweden and all that it represents in the present moment behind.

But I cannot leave him.

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