Sometimes the pain is too intense, and piercing. Triggered by an image, a song, an incident. Nothing is soothing at that moment. You simply don’t know what to do. Who to call or what to turn to. For you know nobody can calm you down; can fill the void; ease the acute, savage pain. You want to scream. You want to hit something. You want to bang your head to the walls. You want to, yes, hurt yourself. You want to do something stupid. Just to end the suffering. End it all.

You cannot; you have made promises to people; you know there are some, maybe a handful, who would rejoice seeing you perishing; you have things to do “first”. But above all, he wouldn’t want you to do it. If his mother and grandmother, and countless others are right, he came to this world for a reason. A purpose. And now it is up to you to fullfill that purpose. Spread his legacy. Tell the story of his strength, his happiness against all odds, his hope.

His eyes. His eyes… How can you, how would you live without seeing those eyes every day? Not being able to even entertain the possibility that you would see them again one day? Not in still pictures. Full of life. Smiling. Crying. Pondering. Curious. Obsessed. Demanding. Loving. Lovable. Lovely.

“Wordlessly watching. He waits by the window. And wonders. At the empty place inside. Heartlessly helping himself to her bad dreams. He worries. Did he hear a good-bye? Or even even hello? They are one person. They are two alone. They are three together. They are four each other.”

https://www.youtube.com/watch?v=WGtFRsCXRcc

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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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Yersiz yurtsuz

Hiçbir şeye benzemiyor. Yıllar boyunca bilinci kapalı kalmış, birdenbire bambaşka bir gerçekliğe, alışık olmadığı bir dünyaya uyanmış biri gibiyim. Her şey yeni olduğu – ve eskiyi hatırlayamadığım – için ne yapmam gerektiğini de bilmiyorum; içimdeki garip boşlukla nasıl başa çıkacağımı da.

Epeyce bir süre hastalıklarla boğuştuktan sonra hastanede kollarımda son nefesini veren babamın ölümünden sonra hissettiklerime benzemiyor örneğin. Evet, genç sayılabilecek bir yaşta kaybetmiştik babamı ama yine de dolu dolu bir hayat yaşamıştı. Hastalığın neden onu bulduğunu biliyorduk; kendisi çağırmıştı onu ve ölümü. Doktorların uyarılarını dinlememiş, uzun, yavaş bir intiharı seçmişti. Ama 5.5 yaşında değildi. Yaşadıkları muhtemelen yaşayacaklarından fazlaydı.
Luca ise henüz alacaklıydı.

Cemal Süreya’nın dediği gibi “Her ölüm erken ölüm”dü ama Luca’nın “üstü kalsın” diyebilecek bir birikimi yoktu. Üstelik gelecekten kendi isteğiyle vazgeçmemişti. Hastalığının bilinen hiçbir nedeni yoktu. Bir milyon çocuk arasından birini seçen Azrail, yıllık kotasını onunla doldurmaya karar vermişti.

Dolayısıyla hissettikleriniz de sevdiğiniz bir yakınınızı, hatta anne-babanızdan birini kaybettiğinizde hissettiklerinize benzemiyor. Biriktirdiğiniz anılar sınırlı olduğundan gözünüzü kapattığınızda karanlıkta mutlu imgeler belirmiyor. Son birkaç hafta, son gün, son gece – o anlatılamaz, ikinci kez yaşanamaz son gece – ölümcül bir kimyasal gaz misali bulduğu tüm deliklerden sızıyor, boşlukları dolduruyor ve içinizdeki her duygu kırıntısını boğuyor. Geriye sadece içi boşaltılmış, ruhu çekilmiş boş bir beden, bir kabuk kalıyor.

Yaşıyorsunuz elbette. Yatağa çakılı kalmak istemiyorsunuz. Zaten uyuyamıyorsunuz. Alkol, ilaç, bunların değişik kombinasyonları fayda etmiyor. Yalnız kalmak istemiyorsunuz, kaldığınız anda kimyasal gaz devreye giriyor çünkü. Yaşamak için idare etmek zorunda kalıyorsunuz. Kafanızı dağıtmak, “normal”i andıran bir rutin tutturmak istiyorsunuz.

Tutturuyorsunuz da. Size hikayeyi baştan anlattırmayacak, “sözün bittiği yer”, “acınızı kelimeler tarif edemez” gibi klişeleri tekrarlamayacak dostlarınızla buluşuyor, yemek yiyor, bolca içiyor, maç seyrediyorsunuz. Sonra bir an, normal bir konudan konuşurken, kendinizi ondan bahseder buluyorsunuz. “O da futbolu severdi; büyüse muhtemelen futbol oynayacaktı” diyor ve duruyorsunuz. Ne dedim ben? “Büyüse” mi dedim? Büyümeyecek değil mi? Bir bira daha açıyorsunuz.

İrrasyonel tepkiler gösterirken bile referansınız o oluyor. İsveç yenilsin istiyorsunuz. Gol yediğinde seviniyorsunuz. Sonra, daha bir hafta önce, İsveç’i tuttuğunuz aklınıza geliyor. Ona İsveç’in forma renklerini açıklayışınız. “Hani Minyonlar var ya, onlarla aynı renk.” Gülüyor, mutlu oluyor, “Minyonlar” diyor. Dede ve anneanne “haydi Minyonlar” diye tempo tutuyor. Ayağa kalkıp zıplamak istiyor. Kalkamıyor. Ayakta duramıyor çünkü.
Araya bu fragman girince kurmak için binbir çaba harcadığınız normalimsi rutin bir anda bozuluyor. Kopuyorsunuz andan, çevreden, dünyadan. Dostlarınız yakınsa, anlıyorlar ve sizi usulca geri getiriyorlar. Dönüyorsunuz, bir sonraki ana kadar.
Sonra aklınıza takılıyor. Sevdiğiniz, çok değer verdiğiniz birinin sizi cesaretlendirmek için söylediği “Yavaş yavaş, bebek adımlarıyla” sözleri. Ya da kanserle savaşırken doktorların size bıkıp usanmadan tekrarladığı cümle, “Her gün yeni bir gün”.

İyi de, bundan kurtulmayacak mıydık, yolculuk bir şekilde sona erince? Geçmiş-şimdiki zaman-gelecek arasındaki bağı yeniden kurmayacak mıydık? Ben yine plan yapamıyorum geleceğe dair? Geçmişi anmak istemiyorum hala?

Şimdiki zamansa Dante’nin Cehennemi’nden farksız. Üzerinde “İçeri girenler, dışarıda bırakın her umudu” (Lasciate ogne speranza, voi ch’intrate) yazan kapıdan geçmişim çoktan, cehennemin giderek daralan katları arasında yol alıyorum. Karşılaştığım türlü lanetli ruhla derin sohbetlere dalıyor, öfkeyle, adaletsizlik hissiyle hesaplaşmak istiyorum. Ne yaparsam yapayım onu geri getiremeyeceğimi bilerek.
Eve dönemeyeceğimi, ev diye bir şeyin kalmadığını, aidiyet duygumu, inandığım tek şeyi, hayatımın en “gerçek” aşkını kaybettiğimi bildiğim gibi.

* İklim’e teşekkürlerimle.

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Not think of God

“— What were you thinking about, child?
— I was thinking of heaven.
— It’s unnecessary for you to think of heaven: there’s already enough to consider about earth. Are you tired of living, you who have barely been born?
— No, but everyone prefers heaven to earth.
— Well, not I. For since heaven, as well as earth, has been made by God, you may count on encountering up there the very same evils as here below. After your death, you will not be rewarded according to your deserts, for if injustices are done you on this earth (as you will find out later by experience) there is no reason why, in the next life, you will not be further wronged. The best thing for you to do is not think of God, and since it is refused you, to make your own justice.”
― Comte de Lautréamont, Maldoror and the Complete Works

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Salvador Dali, Les Chants de Maldoror, Albert Skira, Paris, 1934

Lori Lori

Zafer De Mir is PhD student in Musicology. He watched the short video of #Luca and I playing with the train and felt like singing this Kurdish lullaby for him. I’ve never met Zafer; but I know we share the same tears. Spare two minutes and listen to this beautiful song.

Zafer De Mir Müzikoloji doktorası yapan Dersimli (Zaza, Alevi) bir kardeşim. Geçen gün Luca’nın treniyle oynadığı videoyu seyretmiş ve içinden şu Kürtçe ezgiyi söylemek gelmiş. Tanışmasak da tanışıyoruz, biliyorum. İki dakikanızı ayırın, dinleyin.

Lori Lori:
Kurém nexweş bîrîndar e (Oğlum hasta, yaralıdır)
Bîrîna wî pir xedar e (Yarası çok ağırdır)
Dayika reben hûstixar e (Garip ananın boynu bükük)
Lorî lorî lorî lorî lorî lorî (Nenni nenni…)
Berxém lorî (Kuzum nenni)
Lorî lorî kurém lorî (Nenni nenni oğlum nenni)
Dert girano dayîk gorî (Derdi büyük anası kurban)
Dayîka feqîr tî û birçîye (Garip ana susuz ve aç)
Were hekîmo çare çiye ( Gel ey doktor çare nedir)
Ba şiwan li çol û cîye (Çobanla bozkırda, dağda)
Lorî lorî lorî lorî lorî lorî
Berxém lorî
Lorî lorî kurém lorî
Dert girano dayîk gorî

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One will do…

And what were they thinking around the table? “I’ve come,” said Elijah, “to give you something which can never be taken away from you.” How solemn the table became then, and how great a light rose in the dark faces! This is the message that has spread through streets and tenements and prisons, through the narcotics wards, and past the filth and sadism of mental hospitals to a people from whom everything has been taken away, including, most crucially, their sense of their own worth. People cannot live without this sense; they will do anything whatever to regain it. This is why the most dangerous creation of any society is that man who has nothing to lose. You do not need ten such men—one will do.

Vasnetsov needed “four horsemen” to depict the Apocalypse. Baldwin knew better: “One will do.” One will do!

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I am ready

I recognise my destiny, said he at last, sadly. Well! I am ready. Now hath my last lonesomeness begun.

Ah, this sombre, sad sea, below me! Ah, this sombre nocturnal vexation! Ah, fate and sea! To you must I now GO DOWN!

Before my highest mountain do I stand, and before my longest wandering: therefore must I first go deeper down than I ever ascended:

–Deeper down into pain than I ever ascended, even into its darkest flood! So willeth my fate. Well! I am ready.

Friedrich Nietzsche, Thus Spoke Zarathustra

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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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