Denial

“The five stages of grief”, developed by the Swiss-American psychiatrist Elisabeth Kübler-Ross in her 1969 book “On Death and Dying”, is one of the most well-known analytical frameworks of modern psychology. Based on Kübler-Ross’ comprehensive fieldwork on terminally ill patients, the model originally aimed to understand how people cope with death, and not grief per se. In later years, Kübler-Ross extended her model to the process of grieving as well, to correct widely held misconceptions about the model, showing in particular that these stages are not consecutive stops in some linear timeline in grief . This was indeed the main thrust of her book “On Grief and Grieving” that she co-authored with David Kessler in 2004.

Noting that, “there is no correct way or time to grieve,” Kübler-Ross and Kessler begin by exploring the notion of “anticipatory grief”, which they describe as the “beginning of the end”. During this initial phase, one operates in two different worlds at the same time; the familiar world in which we feel safe, and the unfamiliar world, deserted with the death of the loved one, where we no longer feel safe. Anticipatory grief, the authors say, is one of the mechanisms the subconscious deploys to prepare us for a new, uncertain world.

Anticipatory grief is more silent than grief after a loss. It is experienced introvertedly. It is impervious to external reactions. It does not like to talk, and often it cannot be verbalised. For that reason, a person experiencing anticipatory grief prefers silent interactions, such as being comforted by a gentle touch or silently sitting together.

The person facing death starts grieving “in advance” so as to prepare herself for the inevitable end. The people who love her grieve with her, sometimes without even being aware of it. The five stages of grief – denial, anger, bargaining, depression and acceptance – help us understand anticipatory grief as well. Grief is not only experienced after death; it may precede death as well. Kübler-Ross and Kessler note that going through these five stages during the period of anticipatory grief will not make the process of grief after death easier. Anticipatory grief has its own dynamics; it takes its time.

The five stages in question are not chronological and neatly separated from each other. Not everyone experiences these stages in the same way and in the same order. These are all ways of coping with the loss of loved one and learning how to survive without her.

The first stage, denial, does not necessarily entail the repudiation of death itself. We know that the loved one has died. The feeling of denial is more symbolic in this sense. It is about not being able to accept that the loved one is not going to open the door and greet us again when we come home.

Denial is a state of being paralysed, of numbness. It helps us to survive the loss, and the shock of death. At this stage, life is meaningless. Everything is “too much”; everything annoys. We do not know whether we can go on living or how we will go on. Our sole purpose is to get through the day. Denial is the mechanism that makes this possible.

People who have lost loved ones often find themselves telling the story of their loss over and over again. This helps us to cope with the trauma of death. As denial fades, acceptance creeps in. Slowly, we start asking “how” and “why”. As we review the circumstances that have led to the loss of the loved one, we try to find an answer to the question “could it have been different? Was there another way?” Asking those questions means that we begin to accept the reality of loss and its inevitability. She is not coming back. She won’t open the door to us again. This time she couldn’t make it and defeat death. As the feelings of denial fade away, other emotions we suppressed in that process spring to mind.

Elisabeth Kübler-Ross passed away on 24 August 2004 at 20.11 after a prolonged period of struggle with disease, without seeing her book “On Grief and Grieving” published.

The death of Kübler-Ross leads David Kessler to go through the five stages of anticipatory grief and grief himself that they have written about one more time. “I have to say that if I hadn’t seen it for myself, I might not have believed it, “he said in the preface to their book. “Many people agreed that in some way they thought she was immortal. She always said that when she ‘transitioned and graduated’, it would be cause for celebration since she would be ‘dancing in the galaxies among the stars.’”

He, on the other hand, did not know the meaning of death. Or the death he knew of was something that would happen in games. Only “bad guys” died. Good ones never died, and even if they died, they would come back to life with a blow. Sometimes in order to continue playing, it was required to blow the bad guys back to life as well. All in all, death itself was a game.

Real death was boring. Life was fun. That was what he said to mamma one night. But to me, he said he was afraid of death. His grandmother was with us too. She had come all the way from Turkey to see him, to kiss him one last time, despite a healing broken hip and an injured knee. The Swedish and Danish police were mobilised to make it possible for her aging, worn-out body to meet her grandson.

“Baba”, he said while playing with his Lego. “What if the cancer becomes 100, 1,000? Wouldn’t I die then?” I could not answer. Me and mamma never lied to him either, so I replied his question with a question, like mamma used to do. “Why oğlum? Are you afraid of dying?”. “Yes”, he said. His eyes were full with tears. I started crying as well. “Don’t be afraid. No matter what happens, mamma and baba will be with you, you know that, right?” was all I could say.  “Yes”, he replied in a certain and confident tone. I was relaxed somehow.

But now, I cannot relax. Yes, I was by his side, we were by his side until the last moment, and even after that. But he is gone. He is not with us anymore. All these clichés, “He doesn’t suffer anymore”, “He will live in your hearts forever”, “He is watching over you from the sky”, they are just empty talk. You know it; they know it. They are trying to share your pain as best as they can. This the only thing they can do. If I were them, I couldn’t do any more either.

But I am not them. I am the one experiencing the loss. I am the one suffering. In this sense, I am alone. And I am not ready to accept it. Not yet.

**

A note to readers: I know you are bored with that story. Your life is hard, with the dollar rising and the lira falling capriciously, people languishing in prisons for no reason. Evil is everywhere. At least on the weekends, you would prefer to read something light, something beautiful. But I don’t let you. The editors of Ahval are complicit in my crime as they continue publishing my morbid tales. And yet I am not going to apologise, for this is my reality, at least for the time being. In this reality, in this parallel universe, there is no dollar, there are no prisons. There is only cancer and death. I am trying to get through the day, and I do it by writing. I will however stop writing about this once I write about all five stages of grief. The real grief will not end. I don’t know whether I will be able to write on other, more mundane, topics for death has transformed me. But I am sure I will give it a try. I will give life a try. The show must go on, right? Or… Should it?

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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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“Pain is just is”

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…

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A love like no others

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.

Luca la Rambla

“Bitterness is like cancer. It eats upon the host. But anger is like fire. It burns it all clean.”

You may write me down in history
With your bitter, twisted lies,
You may tread me in the very dirt
But still, like dust, I’ll rise.

Does my sassiness upset you? 
Why are you beset with gloom? 
‘Cause I walk like I’ve got oil wells
Pumping in my living room.

Just like moons and like suns,
With the certainty of tides,
Just like hopes springing high,
Still I’ll rise.

Did you want to see me broken? 
Bowed head and lowered eyes? 
Shoulders falling down like teardrops.
Weakened by my soulful cries.

Does my haughtiness offend you? 
Don’t you take it awful hard
‘Cause I laugh like I’ve got gold mines
Diggin’ in my own back yard.

You may shoot me with your words,
You may cut me with your eyes,
You may kill me with your hatefulness,
But still, like air, I’ll rise…

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Maya Angelou, Still I rise

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.

 

In silence, poetry (re)unites…

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the truth – don’t they say? – is painful


and needs, you know, your blood


needs your wounds


only through these will the life you sought in vain

pass – if it ever does pass through –


together with the wind’s whistling and ghosts

 

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To the one stranded on an island, sharing a similar predicament…

 

 

 

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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Day of reckoning

We have a virtual family. The neuroblastoma parents. A closed group on Facebook with over 3000 members. All sharing the same predicament. Suffering from the same ordeal. Asking questions, trying to learn from each other’s experiences, getting advice; sometimes just venting out their frustrations with the “normals”.

These are some of the things we, as a family, share, and you, the “normals” don’t and cannot understand. (Quotes are anonymized and you cannot find them on google since this is a closed group.)

“Nobody understands what we went through or are going through.”

“It’s so true. Ppl ask how he is but there not really wanting a full on answer. Then say but he looks so healthy! I want to scream at them but can’t no one seems to get it.”

“So true! And some say ‘we know how hard it is’ but the truth is, they have no idea. Only other survivors parents get the whole picture. I also agree that some ask how everything is out of politeness but don’t even want to listen to what’s going on.”

“Agree or how they think you should put your life on hold. When all you want is a glimpse of happiness and normalcy. There will always be the ones that don’t understand fully or those that will judge every step you take.”

“No, they don’t. I would never wish this life on anyone. People complain about having too much of this or too little of that but they never had to watch their child go through these horrible things. Our children shouldn’t be fighting for their lives when they’re so young and it sucks! I hate this life. I keep saying I need a vacation from my life but then I look at my daughter and I know she can’t take a ‘vacation’ from this so I put one foot in front of the other, smile, and keep fighting! This is our life now, whether you’re just starting out, in the middle, or you’ve been done for years. Our fears are all the same.”

I called the feeling, the fish bowl, when my daughter was diagnosed. I was put in a fish bowl and I was in limbo – and I could see out and everyone could see in but no one wanted to be in the fish bowl with me ( don’t blame them). They were all so busy and the all ran by sooooo fast – some would wave as they wizzed by, others would sit and try and talk through the glass for a while but they couldn’t stay long. I wanted out so bad – but you know what… I still climb back in there from time to time and hide away from the world and it’s now my safe place – no one comes in – I just sit there and watch the world wiz by while I hug my little girl in the stillness – very aware of how blessed I am to know how to stop, slow down and appreciate what’s really important.” (Emphasis mine).

And some still – yes, still! – tell me “don’t write”, you are feeding the anger of people you address. You know what, when I feel less lonely, I write about other things too. Not only cancer, or the gloom and the darkness. And you know what, my writings get gloomier as the day of reckoning approaches. That fateful moment most members of our virtual family do face sooner or later…

 

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