A Blog about Life

There are things I am hesitant to write about here because I feel they may be too heavy, too serious or too personal.  On the other hand it would be impossible for me, at moments like these, to post something more light and trivial and pretend that this all hasn’t happened.  I have to write about this, if only to help me process it a little bit.

Last Sunday, the 5th of December, D’s family gathered for his aunt’s birthday party in Bogotá, Colombia, where nearly all of his relatives live.    The following day his 14-year old cousin S., was taken to the doctor because he had been bruising unusually easily.

On Tuesday D. told me that he had heard that S. might have something called idiopathic thrombocytopenic purpura.  We were told his platelet count was very, very low.  We were concerned and wanted to know how dangerous this illness could be and how it would affect S’s life, so on Wednesday evening we spent some time online researching it and the symptoms and treatment.

On Thursday we got an email from D’s mother.  S did not in fact have idiopathic thrombocytopenic purpura.  He had been diagnosed instead with leukemia.  He was going to be put into the hospital right away and would have to be kept there for 6 weeks undergoing chemotherapy.  Most of his family would not be allowed to see him during this time due to his delicate state, and because the doctors were worried visitors might aggravate his condition.

On Friday we heard some rumors that were being passed from one family member to the next, including one in which the doctor told S’s mother to prepare for the worst.  We knew at that moment that S must have an aggressive Leukemia and must run the risk of dying.  However, even with this information, it was difficult to put this fear into words, and actually state out loud what it implied.   In a sense I think we both were in denial at that moment and couldn’t really take it in.

Late Saturday night D opened his computer and saw an email from his mother.  He opened it, stared at it for a moment and was quiet. He left the room and burst into tears in the bathroom.  My heart stopped, everything stood still for a moment, and then I followed him.  I crouched in front of him and reached out my hand towards him.  The tears were streaming down his face and he said the sentence I knew at that moment was coming but still couldn’t believe, “He already died.”

***

S had been put into the hospital on Monday and had spent most of the week alone.  The hospital only allowed his mother to visit him – and only for one hour a day.  She had to wear a protective mask over her nose and mouth and protective gown over her clothing.

S had been diagnosed with a very aggressive leukemia, Acute Myelogenous Leukemia (AML), which almost always fatal without treatment.  Although the doctors had little to no hope in his survival even with treatment, they recommended chemotherapy anyway.

He had one small treatment on Friday night at 11 PM and it was too much for his already weakened body, and he died of a heart attack 7 hours later.  His parents were not allowed to be present at the hospital at the time of treatment, and were not notified of his deteriorating condition until just before he died at 6 AM.

The whole family is now in debt for his short time in the hospital and for this one treatment that ended his life.

If he had not been treated with chemotherapy it seems he would certainly have died, and his death probably would have been soon. However the doctors saw little hope in his case even with the treatment, and they still recommended he be put through it.  So he died on drugs, alone, in a hospital surrounded my machines, attached to tubes, just a few days after his diagnosis, without getting to say goodbye to most of his family.

He could have spent the remainder of his all too short life – days, perhaps weeks, at best months – at home with his family, surrounded by love and warmth, being shown how special he was, how much he was loved.  But, due to the inflexibility and insensitivity of the Western medical system, he wasn’t given that time; his family wasn’t given that time.

And now it’s all over and the family must find a way to come to terms with this tragedy.

***

His image keeps popping into my mind – but as a living, breathing, smiling boy.  And then I have to remind myself: that life that animated that body is gone.

I didn’t have the opportunity to spend a great deal of time with S; I visited Bogotá for a week in December of 2007, a few days in January 2008, and 8 days in January of this year, so my impressions of him are incomplete at best.

To me he seemed very shy, but very sweet and kind.  My favorite memory of him is from my time in Bogotá this January.  When he first saw me on the day I arrived, he gave me the biggest smile and hug, with an openness and warmth that surprised and touched me.

There was something undeniably delicate about him.  He stood in contrast with many of his other little cousins who are all very ebullient and animated, with healthy, solid bodies, fresh complexions and energetic gestures. He had what once might have been called consumptive good looks. He was often very pale with unusually flushed cheeks.  He was very thin.  He had wide, dreamy, heavily lidded eyes, Dante Gabriel Rossetti-style lips, lush curly brown hair, and ears that stuck out a bit when his hair was too short.

He often seemed a bit distant, dreamy, thinking of something else far away.   Sometimes he didn’t quite seem present.  He often looked worried. He often looked tired.

In photographs he almost never smiles.  He seems to be looking at the camera, but also looking far beyond, at something at an immeasurable distance. There is often an unusual depth and heaviness in his eyes in these pictures; you look into them and feel that if you were to accidentally fall into those deep brown pools that maybe you would find yourself swimming in thoughts and concerns of a much older person, already burdened with the sorrows of life.  When he does smile at the camera, it is a kind of Mona Lisa half-smile that is more alive in his eyes than in his lips, a smile that at once seems bemused and knowing, and also a bit weary.

It is in candid photos – when he is playing around or dancing with cousins or friends, or talking to loved ones – that the child in him shines through, and you see the playfulness, the joyfulness and warmth.

The photos that I think are the most telling, the most representative, are the photos of him with his baby brother, born just last year.  While other children his age might be jealous of a new baby in the family, S pleaded with his parents for a sibling.  His mother unexpectedly got pregnant at 40, and was finally able to grant him his wish.  In every photo of the two of them, S clutches the baby with so much tenderness, and stares at him with so much love.  Every time I think of those images I can’t help but sob…

***

When you look at recent pictures of S, you see a young man starting the process of growing into an adult.  In the last year or so, S grew and grew.  He was starting to get a bit of facial hair. His face was losing some of the baby fat and you could start to see the emergence of the face he would have had as a man.  He was becoming handsome.

It is surreal and devastating to look at these images and understand that all the while he was growing up, and his body was maturing, he was also undergoing a completely contrary process…he was dying.

***

On the Sunday, after S died we woke up and it was like the reverse of waking up from a bad dream; we were waking up into one.  In my sleep the tragedy had not yet sunk in and my dreams were about more trivial matters, but when I opened my eyes and consciousness slowly filtered in, I remembered what had happen and felt the shock all over again.  It’s hard to believe that this is the reality, and that I won’t just wake up again and everything will have gone back to how it seemed a week ago, he will be alive, healthy, normal and everything will be the way we all thought it was before.

Death is hard enough to absorb in general, but the sudden death of someone so young is even more so.

A fourteen-year old child was here just days ago, and has now vanished.  I can’t stop thinking about his sweet, genuine smile, and the way he held his brother.  I can’t stop thinking about his parents; I can’t begin to imagine their pain.  I can’t stop thinking about all his cousins, who loved him like a brother.  I can’t stop thinking about his baby brother, who will never know exactly how much S loved him, who won’t be able to remember what it felt like in his older brother’s arms.

S’s family is in shock, and deeply suffering, and there will be no way out of that for a long, long time.  The best that can be hoped for is that in the light of this tragedy, the family will be able to unite, and love each other that much more, knowing that life is short and that the time we have with one another is precious.

***

I’m not interested in suggesting where S may have gone, or why he left so early; the questions like why young, innocent people with all of their lives ahead of them die, why we are here at all, what this lifetime is for, and what happens to our essence when we die, are for each person to struggle with in their own way throughout their lives, and come to their own conclusions.

So what is the point in sharing such a tragic story?

In part I just needed to process what happened this week, because it happened too fast to digest.  In addition I am just offering it as a sad reminder that death is an unfortunate reality – and not just for people who have lived full lives, but for people at every stage of their development.  I think we all can use a reminder once in awhile to love as best we can every day, and find joy, and live genuinely, because – as cliché as it sounds, even a long life is quite short, and none of us are guaranteed even that.

And in addition I want to explore the question of how one can enjoy what one has and live life to the fullest while remaining cognizant of the suffering in the world and the fragility of life.  At some moments it seems the answer is simple -to seek one’s own happiness.  At other moments “the pursuit of happiness” seems like it can all too easily turn into an escape mechanism from the brutal reality of the tragedy that life is for so many people, and an excuse to be selfish.

How do you accept that life is change, that death is inevitable, but genuinely love what is around you?  All I’ve managed to figure out for myself so far is that all I can really do is keep my heart open, try to devote myself to love and compassion and struggle against selfishness, stay cognizant of the fragility of everything but instead of letting the fear this inspires in me make me numb, let it open me up further. That is the constant struggle.

I want to maintain awareness and compassion for suffering, but believe in joy.

As much as I had to tell this story, I have also been questioning how I can write about anything here again after this. How can I go back to lighter more trivial topics when I have written about such a tragedy?

But I don’t want this to be a blog about death.  I want it to be a blog about life, in celebration of life, about ideas and experiences on every level of profundity, from the most silly and inane posts, to serious attempts to probe a deeper understanding of things, about both trivial factoids and penetrating discoveries, because life is composed of all these things at once.

Each day brings different levels of intensity and I guess this blog is a place that must reflect that for me.  Some days I am amused by plants dressed up with eyeballs or people in celebration, other days I have to work on the never-ending process of digesting the simple but impossible fact that death is inevitable, and that we can make no assumptions about when we will die, and what will happen next.

Every day I try to look for the beautiful, amusing and surprising around me.  But the truth is that tragedy and joy put each other in relief, and one means very little without the other.  They both have a place here – and hopefully they each keep us in mind of the other.

So although we must grieve and we must do our best to keep our love for the things we have lost alive, we must also continue seeking joy.  And although later this week I may return to posting something lighter, this story is now part of the whole, an integral part of the big picture, part of the foundation that everything else is written upon, accenting the preciousness of simple, daily life that much more.  Life goes on.  Life must somehow go on.

~ by zoetropic on December 14, 2010.

4 Responses to “A Blog about Life”

  1. Thanks for writing this blog–painful, but very real. I also like noting the finer moments in life. We are both a nice addition to the web, I think.

    http://bit.ly/b5dU8k

  2. I opened this comment box, but there is nothing to say, nothing I can do, but let you know that I have read this, and feel (just a little) what you feel, and let you know that you and all the family are in receipt of my sympathy, immaterial and ultimately useless as it is.
    I find myself looking to you and your words for hope, for descriptions of a lifetime lived, of love and family, perhaps even knowing that what I want to hear is a fairy tale – where even a tragic ending cannot completely spoil the joy of the story. So I unintentionally burden you with an expectation that you, the writer, will complete the story, spread the word, pass on the tale, keep a little bit of the boy S. alive in the minds of all who hear it. Like barbarian songs or epic poems, he will be remembered with your words.
    Perhaps you and D. can find some little stories from S’s life, and format them into easy to tell tales, that can be passed on. One day his brother, his cousins, may tell them to their children, and he will be remembered for another generation.

    And so there were words after all…

  3. I adore your blog. You write so touchingly – and always from your heart.

    I too have suffered loss and you are quite right, life must somehow go on. I take comfort from knowing that grief is the price we pay for love.

  4. I’ve only just discovered your writing, here on this blog, and I’m relieved and glad that the loss of S. didn’t silence you…glad that you decided instead to weave these important last shadows of his story into the continuing fabric of your joy of life. Doing such a thing doesn’t diminish life. On the contrary, seeking to understand, contain, and harness life’s horrors as well as its beauty can be one of the most life-affirming things we ever do. I once worked with the dying for six years and they taught me the alchemy involved, how dying is really still life only even more so; aching, luminous, terrifying, and magnified a thousandfold. I’m very, very sorry S. died in the snare that the current system so often sets, sorry that it robbed him of time and compounded the losses for all of you. It shouldn’t have happened that way and there are many currently fighting to change the system so it happens less and less. S.’s story is important and needed to be told and I think you were incredibly brave to do so.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

 
%d bloggers like this: