The void

“My heart is void.” For some time, I thought it wasn’t. I thought I found true love – the meaning of life some say. I felt I belonged. The love had a name. His name was Luca.

My love was unlucky. A rare disease found him. He was only 11 months old. He fought bravely for 3.5 years. The beast was strong; he was stronger. There were times the doctors lost their hope. There were times everybody lost their hope. He has proven them wrong. For how long, we don’t know. But right now, he is a happy, healthy boy.

I am not. Therapists call this “compassion fatigue” or “burnout”. I need to stay afloat; I need to heal. And the only way to heal, at least for me, is to write. Not useless academic crap. Not equally useless repetitive op-eds. Just write. About Luca, about his struggle, about our struggle… About life and most of all, my life.

Why share? Because I have never written for myself only. And maybe, maybe there will be things in our story that others facing a similar fate would find useful.

That’s all really.



Chemo rage

“Pain is good”, says the doctor. “We are killing nerve cells. Pain means it works”. And you know he is right. You are in war, a war with no rules. No jus ad bellum – the cancer does not consult the UN to wage a “just war”; no jus in bello – the cancer does not follow any rules to minimize pain and suffering. If you don’t kill it, it kills you. If you try to avoid chemo-pain, you will get tumour-pain.

But how do you explain this to your little one who asks his mother, while the doctor tries to explain the process, whether he will die of cancer? “Of course not”, she says. “Of course not”, you say. “Of course not”, the doctor says. The little one believes in you. The green ninjas are going to kill the cancer. The pain is part of the process. So is nausea, vomitting, loss of appetite (hence weight), atrophy, numbness – and a “uncomfortable” one at that – and sleep, sleep, sleep. Only to wake up to more nausea, with more dark circles under the eyes.

Google tells you that personality change is not an uncommon side effect of chemotherapy. It is called “chemo rage”: “Anger is a completely reasonable response to cancer and the many difficulties it brings. But for some people, their cancer treatment is accompanied by a sudden, uncharacteristic increase in irritability, angry outbursts, and even aggressive behaviour. This can be really alarming and upsetting for both the person going through cancer and their loved ones.”, writes a decent website.

The little one does not have chemo rage. He is too small to feel anger, or to name the feelings he experiences in those terms. But “the loved ones” the above excerpt refers to, and indeed “the loving ones”? What about the anger they experience? The rage that comes with helplessness, desperation?

Some say “don’t over-dramatize”. It is not only you. It is not only him. But you know that it is not only him. In fact, you have already witnessed several loved ones losing the battle. But losing your child? To this beast called neuroblastoma? A beast which targets only 1.1 percent of the kids according to the statistics of American Cancer Society?

“Don’t refer to him or his case to explain things”, they say. “Don’t use him as an excuse”! An excuse? What the are you talking about? That thing you call “excuse” is the backdrop to my life, even if vicariously. I work to distract myself. I write to vent out my frustration. I am doubly angry when someone hurts me, because anger is the wallpaper of my everyday life.

No, I don’t expect you to empathize with me – you can’t; I don’t expect you to treat me differently – it won’t help; I certainly don’t want you to pity me – it would an affront to our struggle, to what we have already achieved. If you really want to help, be silent. Don’t worry, anger does not make one blind or irrational. I don’t go around and look for someone to dump my anger. On the contrary… I avoid trouble, because I am already troubled.

I have chemo rage. Not because I receive chemotherapy – I wish I could in his stead – but because the first thing I see every morning when I go to the kitchen to prepare some coffee is this:

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This is a piece written by Julie Wark, one Fred’s closest friends, who was with him at hospital during his last days and moments. Julie did not want to publish this essay – you will understand why when you read it. She kindly allowed me to share it with you, in this personal blog (You may read this with my previous post; they are complementary



Fred was a giant in more ways than one. Some months before his death, he weighed almost 180 kilos. Some of us who loved him wondered why he was so wilfully undermining his health. Sometimes we wondered about slow suicide and Fred was indeed preparing for his death, giving detailed instructions concerning his last wishes to myself and another friend in Barcelona as early as 2008. Yet he fobbed off our fears by his huge enjoyment of the simple pleasures of life, his conviviality, his wit and his zest.

In all the tributes to our colossus there is almost zero mention of a couple of key facts of his last years or, better said, lifelong facts that took on their noticeably self-destructive form towards the end of his life. His greatness certainly tended to overshadow his frailness and, in our loss – massive and impossible to take in properly when a colossus leaves us – it is perhaps too hard to think of frailty, not least because it raises questions of whether we might have helped him more. Fred had a severe bipolar disorder and was an alcoholic. It was easy to put his mood swings down to his being a tormented genius and he nourished the deceit. His alcoholism usually took the Dionysian form, so he was generally excellent company over a good meal and a bottle of wine (which he tended to precede with a few extra, solitary, glasses of wine or g&ts) but these occasions sometimes ended in an outburst of amorphous wrath, which he would try to focus on some perceived slight. As soon as the attack was over he would always phone and apologise. But the rage never left him.

He grew up in the Irish border town of Dundalk with all its associations with the mythical warrior Cú Chulainn and later troubles, and was educated by the Marist brothers until being sent off to a Benedictine boarding school in England at the tender age of eight. His well-to-do English father was an alcoholic and Fred’s childhood was traumatic. When he was a young child his mother gave him the task of finding his father’s stash of bottles and perhaps his white-knight streak, his desire to save people goes back that far. At twenty he was in Lourdes washing pilgrims’ feet, wanting to be a priest and, not long afterwards, he had chosen another form of saviourhood, putting his intellectual gifts to the best use he could with the revolutionary Black Dwarf and New Left Review projects in London when he was not with guerrilla fighters in Dhofar.

Nothing he could do, all his knowledge, all his gifts, all his untiring efforts, nothing could prevent the events that led up to the Gulf War (1990-1991) – and the opprobrium he suffered at the hands of some of his erstwhile comrades because of his support for that war – the attacks of 9/11 and everything that followed in the Middle East. He understood the subtleties of Islam, understood the West and the intricacies of its constellations of power, was a brilliant international relations theorist and he could not bear the crude viciousness of the polarisation that tore his world apart. Fred was not an ideologue, which meant he was never a god-that-failed Marxist either, so there was no easy intellectual or political refuge for him. The major nervous breakdown that followed was nothing more than a year’s hospitalised, heavily-medicated respite.

The Fred who came to set up a base in Barcelona in 2004 wanted to write about cosmopolitanism and to find happiness. His marriage was over and he was going to rely on his insatiable curiosity about “the persistent unpredictability” of human affairs, his old friends, a good climate and a Mediterranean culture to bring some of the joys he felt London denied him. The bevy of young Latin American beauties whom he fussed over and worried about, and who seriously fleeced him, did not provide the “family” he wanted. Just before his second and final breakdown he said he realised he had only succeeded in making a great big bubble for which, like the financial one that was blowing up everywhere else, he paid a personal price greatly at variance with intrinsic values. His other family was my own. He spent Christmases with us, knew all the ins and outs of our lives, was welcomed, and he endeared himself to everyone, but we weren’t enough either.

Fred’s quest for recognition often took the form of feeling slighted followed by raging about some or other colleague who hadn’t appreciated a favour, the minister who hadn’t sent a car to pick him up at the airport, the editor who never valued his articles or books enough, the government that failed to seek him as an adviser, the colleagues who avoided him. The devotion and understanding of his students, so eloquently articulated in the many beautiful letters they sent him as he lay dying, the love of his friends and of his younger colleagues (and some former ones) and PhD candidates he had supervised with great empathy and attention could not fill his need. He craved love and rebuffed it: love me but noli me tangere. He was so loved and so alone.

A habitué of the spheres of governance, Fred befriended waiters, shopkeepers, bar flies and people he sat next to on planes; he respected the great and powerful, sometimes too much, but never lost his strong anarchist streak; got around, even on quite formal occasions, in scruffy shorts unconcerned about showing off the frighteningly blackened legs of his collapsed veins, but somehow never lost his elegance, even in the most disreputable of the outsize t-shirts that occasionally didn’t quite cover his monumental belly; was a giver of himself and of small, carefully chosen gifts from his travels; an attentive, caring and, at times, most vexing friend; at once heartbreakingly open about himself, his dreams, his projects and his troubles, and eel-like in his evasiveness; the white knight who wanted to ride into battle for a lady (or even to fly across the world to “knee-cap” (roar at) a publisher who once cheated her); a gentleman; a gentle man, who poured scorn on the apostles of postmodernism (“po-mos”) and sloppy mawkish thinking; a tough guy with a touch of marshmallow; stoic in the physical discomfort that was the revenge of a sorely tried body; the ascetic of great appetites; wise man with the child’s curiosity; erudite lover of language, words and etymology, of some poetry, of some music, and implacable teller of corny jokes; the man of commanding presence who crumpled and cried drunkenly (mawkishly even) late at night over his Irish ballads and phoned then to share his sorrows; the revered keynote speaker who, again, got on the phone to Barcelona at three in the morning for comfort when he just could not handle Jerusalem and who was talked though instructions to pack his bag and get himself down to Tel Aviv and on a plane out of there now, obeying with the meekness of a lamb. He had a singularly lovely smile in an often melancholy face.

Fred, the man who seemed to have it all, struggled hard and for a long time with ferocious personal demons. His gallant battle to remain above them, not to submit, and the arms he employed against them – his brilliance, his ethical commitment and his intellectual generosity – were very much part of his greatness. Perhaps this recognition will generally be denied him too for it is easier to revere the public figure.


Fred with Dhofari rebels, early 1970s. This photo has always been special to him.

Barcelona, Fred, Barcelona

I don’t remember when I first came to Barcelona. Was it before Fred decided to settle here in late 2000s, or was it after, to visit him? I do remember vividly the conversations we had in London though, which almost always ended with a discussion on where to settle after his retirement. He didn’t want to stay in London; he needed Mediterranean weather, good food and other delights of life – delights which he firmly believed London denied him.

“I have three choices”, he told me once. “Istanbul, Beirut or Barcelona”. Istanbul was out because he didn’t speak the language and as those who are lucky enough to get to know him a little would know, language was everything, the sine qua non of a cosmopolitan lifestyle he devoted himself to. He never believed one could do International Relations or Area Studies without being fluent in at least one of the languages spoken in one’s area of expertise. Beirut did fit the bill in that respect but, “it was too chaotic”, he said. “I am old now, I want some peace of mind.” Barcelona had it all: the sun, the beach, delicious food and more importantly exquisite wine, warm-hearted people, lots of Latin Americans for whom he always had a soft spot, and language (he could lecture in Spanish as he would in English and he had a private tutor to learn Catalan – in addition to 7-8 other languages he already spoke).

So he bought a small, sunny flat at the heart of Barcelona. And that was the beginning of our pilgrimages. I say “our”, because Fred’s students, spanning many generations, were a community of their own. No, definitely not a bunch of acolytes, or a cult of makeshift Fred Hallidays, since the first thing the “grand master” taught his students was to be critical, critical of evertyhing, not least of him and their own beliefs. “At my funeral”, he wrote in one of the aphorisms he composed in his favourite chiringuito in Barcelona, “the one thing no-one must ever say is that ‘Comrade Halliday never wavered, never changed his mind’”.

Each visit was memorable in its own way. It would start with a breakfast or lunch in his favourite local café, Tris Tras in Plaça Molina – a lousy café at that, but Fred had a thing for lousy cafés, restaurants and bars where he felt at home; the dreadful “so-called Cypriot” restaurant Yialousa in Russell Square was Tris Tras’ counterpart in London. After a siesta at his place, the day would continue with cocktails at the beach and end either at the local Argentinian steak house or again in his place, partying until the wee hours of the night accompanied by countless bottles of red wine. In fact, the only thing we were expected to do “as students” was to carry the boxes of empty bottles to the recycling bin the following morning.

Like Fred, most of us fell in love with Barcelona. In my case, I also fell in love with Fred’s friends, the “one of a kind” Carmen (the daughter of the famous Spanish communist historian Fernando Claudin), the omniscient sage Pere, the marvellous Julie Wark, and I am running out of adjectives now, the younger generation Eduard, Lucila, and so many others. If Fred was my second father, then Carmen was definitely my second mother. Using her wide wisdom to correct my mistakes, to remind the perfectionist in me that I am flawed like all others – all with an endless patience, motherly affection and care.

We were all worried about Fred’s health, but we weren’t expecting that he would be hit by his personal demon, depression, first. It was Julie who found him in his flat, in desolate shape (this time, the adjective is an understatement) and took him to hospital… where it was discovered, after some time, that he had a very advanced stomach cancer as well. We wanted to visit him, but he did not let us. He didn’t want his students to witness his frailty, his weakness. We had long been aware of it of course; but he chose blissful ignorance and we played along. Katerina (Dalacoura) and I have decided to “overrule” his wishes at some point and to go there for an extended weekend. I was in Sweden; she was in London. We had arranged our tickets to meet at the airport. Just a week before we could board our planes, on 26 April 2010, I woke up to a text message by Carmen. He was gone. He was 63, just like my father when he passed away five years before him.

I taught I could still visit Barcelona, if only to meet my friends, “my extended family” there. And I did a couple of months later, for a conference. But it wasn’t the same; maybe it was too early to go, maybe I wasn’t ready yet. I never dared to try again. I deleted Barcelona from my personal map. With a few exceptions, I didn’t stay in touch with my friends and family either.

Until three days ago that is. The twisted irony of what some call “fate”, I ended up here fighting for the survival of the most precious thing in my life – that “thing” that Carmen, Julie did not even know existed! But family is family. The love is unconditional, endless. It surrounded me – us – the moment I set foot in Barcelona. It was home after all. A long-forgotten one, Odysseus’ Ithaca, the end point of a long journey.

“You take delight not in a city’s seven or seventy wonders, but in the answer it gives to a question of yours”, wrote Italo Calvino in his timeless classic Invisible Cities. And I have a question for Barcelona. Will she have an answer to it? I don’t know. And if she does, will I like the answer?



Again (update from Luca)

Unfortunately, Luca is not stable anymore. After four months of “normality”, the disease is back with a vengeance. He was taken off the LA trial, and after an intense weekend of email traffic among oncologists from four countries, we brought Luca to Hospital Sant Joan de Deu in Barcelona which offers the treatment developed by New York Memorial Sloan Kettering for which we did the fundraising two years ago.

Time is running out; Luca is not well; so we need your prayers, good wishes more than ever.

P.S. We will try to keep you posted. We may also need to start a new fundraiser as we are now operating on a very tight budget (your contributions already took us to Michigan, Los Angeles, and now Barcelona, enabling us to give him the best treatment available. We are, and will always be, eternally grateful for that.)


Questions about dying

I have never heard of Cory Taylor, the Australian author who died of melanoma on July 5, 2016, until I read the excerpt from her last book, Dying: A Memoir in The New Yorker. I remember reading the excerpt about six months ago, mesmerized, and yet – or precisely because I was mesmerized – I have not even googled her name. I simply did not want to know more about her. The story she was telling was enough. It had its own twisted charm, some sort of magic that should have been left untouched.

I revisited it today. This time, I have bought an electronic copy of the book and read a little about her. I came across an obituary written by one of her friends, fellow writer Kristina Olsson, who beautifully expressed the feeling of “being robbed” prompted by death: “All the books Cory didn’t get to write, the books we won’t get to read, to hear her talk about. What they might have given us, revealed about us. The awards they might have won, the people they would have moved. An absence on our bookshelves and in our lives.”

While reading those lines, I could not help but thinking that the “absence on our bookshelves” could always be filled. Yes, none would probably match Cory or any other writer for that matter, but the bookshelves would remain filled by other writers who would move us in different ways. What about the void created by the loss of someone we love dearly? Could that be filled? A partner with another; a child with another; a parent with another? Even a friend with another? I don’t think so.

This was what Cory had to say about “questions for her about dying”:

“Yes, I have considered suicide, and it remains a constant temptation. If the law in Australia permitted assisted dying I would be putting plans into place right now to take my own life. Once the day came, I’d invite my family and closest friends to come over and we’d have a farewell drink. I’d thank them all for everything they’ve done for me. I’d tell them how much I love them. I imagine there would be copious tears. I’d hope there would be some laughter. There would be music playing in the background, something from the soundtrack of my youth. And then, when the time was right, I’d say goodbye and take my medicine, knowing that the party would go on without me, that everyone would stay a while, talk some more, be there for each other for as long as they wished. As someone who knows my end is coming, I can’t think of a better way to go out. Nor can I fathom why this kind of humane and dignified death is outlawed.”

“Yes, I’m scared, but not all the time. When I was first diagnosed, I was terrified. I had no idea that the body could turn against itself and incubate its own enemy. I had never been seriously ill in my life before; now, suddenly, I was face to face with my own mortality. There was a moment when I saw my body in the mirror as if for the first time. Overnight my own flesh had become alien to me, the saboteur of all my hopes and dreams. It was incomprehensible, and so frightening I cried.

‘I can’t die,’ I sobbed. ‘Not me. Not now.’

But I’m used to dying now. It has become ordinary and unremarkable, something everybody, without exception, does at one time or another.”

“Yes, I have regrets, but as soon as you start rewriting your past you realize how your failures and mistakes are what define you. Take them away and you’re nothing. But I do wonder where I’d be now if I’d made different choices, if I’d been bolder, smarter, more sure of what I wanted and how to get it. As it was, I seemed to stumble around, making life up as I went along. Looking back, I can make some sense of it, but at the time my life was all very makeshift and provisional, more dependent on luck than on planning or intent.”

“No, I am not unhappy or depressed, but I am occasionally angry. Why me? Why now? Dumb questions, but that doesn’t stop me from asking them. I was supposed to defy the statistics and beat this disease through sheer willpower. I was supposed to have an extra decade in which to write my best work. I was robbed!

Crazy stuff. As if any of us are in control of anything. Far better for me to accept that I am powerless over my fate, and that for once in my life I am free of the tyranny of choice. That way, I waste a lot less time feeling singled out or cheated.”

“I shall miss you so much when I’m dead: Harold Pinter, dying of cancer, speaking of his wife. I know exactly what he means.


Why the me? Why the anything?

I am supposed to work, but I don’t want to. As in the title of the 1990s Stone Temple Pilots hit, I am still “half the man I used to be”. Drained of energy, on an emotional roller-coaster, fighting to muster the strength to go back to business as usual.

Actually, I kind of know that it is never going to be business as usual again. A lot has changed in the last couple of months and some of these changes are irreversible. Not so much my usual habitat – though this has morfed into an everyday hell partly of my own making.

Things might improve of course. The habitat could be rejuvenated or, if it becomes totally inimical to human existence, one might move to a different planet, to recreate life. But, and this is a big but, this requires will and energy. Precisely the resources I lack!

For the problem is to a large extent existential. I have lost my belief in what I do and what I feel. I mean why write another book, another article very few people would read, just for the sake of embellishing your CV or increasing your overall “impact factor”? Why invest in a new relationship if it is going to end up in the sewage? Why make new friends if the old ones can turn their backs on you at the first opportunity?

I do need to work of course to make a living, to support my family, to pay my bills. Yet I can do this with minimal effort, without going the extra mile. And I can try to make money through other means by doing things that would poke the child in me. See, this is the root cause of all the problems actually. I feel old. I feel old for the first time in my life and needless to say, this has nothing to do with my physical age. I am of course aware that life has not been easy on me since 2014. Still, I was fighting, struggling, for him, for myself and for significant others. Now I cannot shake the feeling that I have fulfilled my duty. Done evertyhing I could do. For everyone. On all fronts.

The darkness is not as thick as, say, two months ago. And I know that I will persevere, if only for him. It is just that I have to find a way to adapt to new realities. First and foremost, to the fact that I have “aged”, that I am worn out. I require care (I would not dare say affection). And I am not used to requiring care. I am strong. Self-sufficient. I have always been so. Even the possibility that I may not be that way anymore is scary

I recently came across this song. I didn’t know the band. Apparently an indie folk band from Portland, Oregon. American indie folk is a hidden treasure if you are into that kind of music. And a vast treasure, filled with suprises, rare gems.. I never thought music would be so central to pretty much everything I write when I started this blog. It just is.

Now you don’t have a word to call this kind of a year
That made you kneel and beg it to turn you right
Two dead birds underneath the headlights
Every sound they ever made to call out they are alive
Every piece of me that breaks, trying to keep from the side of doubt

Don’t you doubt
Everybody’s seen some winter, don’t you take the dark way out
Don’t you doubt
Even your breath is breathing for another one
Don’t you just take the dark way out

Thin wind ringing in the silver tines
Yeah, it took you by the throat but it wasn’t the killing kind
And now you don’t tell it like you used to
Every day left in the dark is going to come back to you
Every hope left in your heart is waiting on what you’ll do with doubt

Don’t you doubt
Everybody’s seen some winter, don’t you take the dark way out
Don’t you doubt
Even your blood is beating for another one
Don’t you just take the dark way out

Don’t you doubt
The reasons are all dead and they’re growing in the ground
So why does it give? Why the take? Why the bitter kiss?
Why the me? Why the anything? Just be the man
Be the child, be the cold midnight soaking the bones of this town
In the breath, in the beak, in the honey taken from every green thing giving sweet
In the call, in the pull, in the want and want, in the sound even your own body knows
All there is, seed and shell, your hands are lined with all that they haven’t held.


L’espoir (Hope)

Four people in the last four days… Four people who have a different – yet very important – role in my life… A friend who is “faraway, so close”. A doctor who is much more than a doctor, a life coach, an inspiring role model, a rebellious spirit. A therapist who is the voice of reason, but not cold, calculated reason; one who takes emotions, passion always into account; one who has a perspective on life wide enough to encompass both reality and human weakness (or shall I say, mimicking Malraux, “la condition humaine”?). And yet another doctor, actually a non-practicing psychologist who has guided me through the most difficult times, making the dark winter days brighter with a phone call made in the wee hours of the morning from an “unknown number”.

They all said the same things. They all said good things. Uplifting. Inspiring. Reminding me of who I am. Could it be a coincidence?

Could it be a coincidence that the same Malraux has also written a novel called L’Espoir (1937; translated into English as Man’s Hope the following year) – that is “Umut”?

“Il n’y a pas cinquante manières de combattre, il n’y en a qu’une, c’est d’être vainqueur. Ni la révolution ni la guerre ne consistent à se plaire à soi-même.

(There are not fifty ways of fighting, there is only one, and that is to win. Neither revolution nor war consists in doing what one pleases.)


The art of war – Part II

If I had a chance to meet the Chinese master Sun Tzu, I would have asked him a simple question: “How do you wait until it is the right moment?” Because if your sense of dignity, self-worth, hence your mental health and very survival depend on fighting back, then when you cannot fight, for one reason or another (it could be the wrong moment; it could be the wrong war; it could be a just war with no winners), you will feel emasculated, even castrated to use the psychoanalytic jargon. I am not a big fan of either Freud or Lacan, so I will not bore you with things that I do not believe in myself – i.e. the castration complex.

But there is a sense in which the feeling I experience when I cannot fight back for what I “perceive to be” a just cause resembles castration. I cannot fight against cancer for instance. I am doing anything in my power to keep my loved one alive, but I know that this may well be not enough. There were times when it was indeed not enough. I did experience the agonizing sense of helplessness, the desperation Andy Whelan has so eloquently described watching his loved one, the little yet stoic Jessica, suffer at the hands of the beast. And this makes me angry. I feel like exploding in fury and frustration; I want to scream as loud as I can, as if to reach God/the universe, “this is not fair, this is not fair”. Instead, I implode.

And you cannot fight when you feel, or really are, weak. If your enemy possesses “superior strength, evade him” the wise master of art said centuries ago. Cancer, for now at least, is of superior strength. It comes in different guises. Sometimes it takes the form of childhood cancer; at other times it splits into two and implants itself into different organs of another loved one. It develops resistance to new forms of treatment; it hides under the cloak of other diseases to prevent defeat. It does seem to be familiar with the master’s guidelines as well; it is “extremely subtle even to the point of formlessness … extremely mysterious even to the point of soundlessness.”

Power can take more shallow, more blatant forms as well. Sometimes that which you cannot fight – or not fight yet – is an institution. Sometimes it is an individual like you who is protected by vested interests. As with cancer, you know that you cannot fight it, for you would lose. You may wield more power, enjoy more self-satisfaction (than in the fight against cancer), but the price you would be pay will be high. You know that when you are taking on “power”, institutional or individual, you must “Attack him where he is unprepared, appear where you are not expected.”

So we are back to square one. How does one wait? Where does one get the strength to be patient? And perhaps more importantly, how does one accept defeat? Do you have an answer to this as well, Master?

On remembering and forgetting. Or Cancer…

Last Sunday, the 4th of February, was the World Cancer Day. I don’t know how many of you have noticed, but if you are a regular user of Facebook or Instagram, you could not have missed it. You all receive those notifications, or “reminders”, as they call it, right? Remembering squeezed into a simple algorithm that acts as a God-like figure which tells you what to remember and what not to remember. Anniversaries, “happy friendship days” accompanied by haplessly cheezy messages…

I am sure some people find them helpful. Others, like me, hate them, trying to find efficient ways of turning them off for good – as you probably are already aware of, getting totally rid of them is not so straightforward. You turn off one; another pops up. You unfollow someone; it creeps back into your timeline via a “like” button pressed by one of your friends. Blocking is not an option either, for you can block people, but you cannot block Valentine’s Day, for instance. Or another important date that Facebook, the omniscient gate keeper of time and of our minds, thinks we “have to” remember.

But what is wrong with raising awareness with regard to cancer, I hear you ask. Nothing. Unless you are a cancer parent that is. If you are, cancer is your everyday reality. Equally, it is something you wish you could forget. I always think of French historian Ernest Renan’s fitting observation about nations when I see such reminders: “the essence of a nation is that all of its individual members have a great deal in common and also that they have forgotten many things … Every French citizen has forgotten St. Bartholomew’s Day and the thirteenth-century massacres in the Midi.” Cancer is the St. Bartholomew of those whose loved ones have to go through the ordeal of cancer.

I am of course aware that St. Bartholomew is a thing of the past whereas cancer is your present, your “here and now”. But the analogy is not too stretched, as cancer parents forget about the disease the moment their children go into remission. They never think it might come back; they deliberately make it a thing of the past; delete all traces of the suffering their loved ones had gone through to enjoy some sense of normalcy – however brief it may turn out to be.

If you do want to see what childhood cancer is like, however, and raise awareness, then I suggest you check and share the 4 year old Jessica Whelan’s Facebook page who passed away on 20 November 2016 after a two year battle with neuroblastoma. His father, a photographer, released the following picture when they were informed that Jessica had only a few weeks to live.

The black and white photograph went viral, leading some to question the appropriateness of making such an intimate moment public. Andy Whelan who had to face his own St. Bartholomew was unapologetic, and rightly so. His words are worth quoting in full (emphases mine):

“As a photographer it is important to capture the truth and the reality of a situation, too easy it becomes to capture the joy of life whilst discarding the torture that we see.

This is the hardest photograph I have ever made, it is in fact my own four year old daughter. A few days ago she was given what is most likely only a few weeks to live after a battle against cancer that has been waged for over twelve months. This photograph was made in a moment that we as parents could offer her no comfort, her pushing us away whilst she rode out this searing pain in solitude. This sadly, for us as a family, is not a sight that we see rarely. This is now a familiar sight that we see regularly through each day and night, its frequency now more often. This is the true face of cancer, my baby girls blood vessels protruding from beneath her skin, a solitary tear running down her cheek, her body stiffened and her face contorted in pain.

I could try and use a thousand words to describe this image that we as parents are confronted with on a daily basis but these words would fall short of truly depicting the sight we see. With this photo I do not mean to offend or upset, I do mean however to educate and shock those that see it in its context. Perhaps by seeing this photo people not in our position will be made aware of the darkness that is childhood cancer, perhaps these same people may be able to do something about it so that in the future no child has to suffer this pain, so that no parent has to bear witness to their own flesh and blood deteriorating daily.

The only apologies I offer are to those that know Jessica, I understand that this photo is hard to see and even harder to absorb. To those that do not know Jessica I offer no apologies, this is what cancer does to a child in their final weeks and days!!! Before her diagnosis I was one of those ignorant to the darkness of childhood cancer, not truly appreciating the hell that it brings. It would never happen to us! Now I give childhood cancer the respect it deserves, seeing too many children suffering this same fate and watching families torn apart.

If this photograph only serves as a purpose to make people think twice about this evil and put into perspective what it does to a child, then it has achieved its purpose. Research needs to be done, cures need to be found, too long now has this been allowed to happen.

Please I beg of you, as a heartbroken father, it is too late for my daughter, but childhood cancer needs to be cured. No family should have to go through this hell.”