2 years today

Today marks the second anniversary of death, I’m still unsure of how to attach ‘death’ with someone who was so alive. The heart still refuses to believe what the mind has known all along. I’m not sure if it will ever feel real, if it will ever sink in. There’s nothing good about this day as it permanently marked the end of life as I had known it. In one single instance, the innocense and spontaniety about life evaporated.

My late wife lived her life with remarkable enthusiasm down to her last days.Despite the gravity of the situation, there wasn’t a day where we felt that all was lost. Infact just the day before, she had shown visible signs of improvement. I had thought that the worst was over, that we would survive this eventually.

Early in the morning on Mar 12th, I received a call from the ICU. The doctor on call said I shoud rush immediately, I didn’t know how to react. My logical faculties were on the verge of shutting down. It had been almost 10 days since she had been in the ICU fighting with extraordinary courage for life and for the people she had dearly loved.

Before cancer invaded our lives, there was not a single day either of us had spent in the hospital. She was extremely fit, full of energy and filled with a life force that was infectious. Perhaps it’s a testimony to her physical and mental strength that she was able to withstand months of such gruesome treatments.

The day before she was moved to the ICU, she was in unbearable pain.Even getting off from the bed was a nightmare. Yet, she walked to the restroom refusing support, teeth clenched and eyes fierce with determination. I guess  that was her way to defy the odds. The two channels that she had watched most during the long and innumerable hospital stays were comdey central and the food channel. Laughter and food – her two great loves.

In the wee hours of the morning when I got that call, unknown to me the last day of her life in this physical realm had begun. I was handed an xray and told that fluid had filled up in her lungs. I remember asking “surely there would be a way to drain this”, we had come so far in our battle against cancer. How could this be a road block? No one told me what next, I was just told it was serious and they would try a procedure to alter her position so that the fluid could be drained but there were no gaurantees it would work.

By afternoon, I was informed that she might need dialysis as the kidneys were failing. It was only much later that I read that this was the first sign of multi organ failure which means that the end is near. But on that day, I couldnt even remotely fathom it. I was allowed in the ICU in the evening and I sat near her – just the nurse and me surrounded by flickering screens and medical stats that defined life and death.

My eyes were fixated on the screens, I was watching the numbers go up and down. I have no recollection of what I was thinking because I wasnt – I was in a deep mental void, the kind when your brain has decided to shut down in the face of extreme stress. I dont know how long I sat like that, time stopped and freezed on me. I remember being told to take a break and go out but I didnt hear anything. Words no longer registered.

I saw the nurse hustle around and pump in more and more meds to stabilise the falling blood pressure -“pressers” as known in the medical jargon. I looked at my wife and she seemed to be in a deep sleep. The breathig was labored but it was hard to tell as she was on life support.

Then just past 910 pm, the dreaded straight line appeared on the screen. As for me, I still registered nothing. I got up and adamantly asked the nurse and she was too shocked to say anything. Then she murmurred “the doctor will soon come”. I had no idea what she was talking about. The doctor came in and as a matter of fact said “She’s no more”. Still nothing registered. I asked him how can that be as she was still breathing. Of course in my almost comatic state, I had not realized that the life support machine was still on.

I held her hands for the last time – limp and cold. She hardly looked like the person I had known all these years together. Something seemed to have left the body. The absence of the life force was unmistakable.I didnt cry or wail, tears streamed but I was numbed beyond belief. I left the hospital a few hours later, all alone in this world filled with people but without that one person who made my world go around.

I had switched off from this world. I saw everything that was happening around me but they seemed to be coming from a far away place. A few days later, the last rites over,I found myself carrying an urn of ashes.Twelve years of laughter,happiness, countless memories and unfullfilled dreams rested in that urn.In accordance with religious customs I submerged them at the confluence of three rivers.

On the way back, we stopped at a cafe on the same highway that we had gone on numerous holidays together. I recalled the last time we had stopped here, enroute on yet another vacation.I felt a brutal coldness in that moment. It was a feeling cold, unforgiving and of being scaringly alone in a world full of people.I still shudder when I think of that moment.

It was only after everything was over that the pain erupted with its mind numbing intensity. There was no getting away from it. I woke up with it and till I fell into a troubled sleep, there was no respite. My insides screamed with pain but no words would come out.It was almost like I was drowning and no one heard me.

It was then that I realized that getting out your thoughts was a healthy way of grieving. I started this blog and since then have shared my journey here. These two years have been the toughest years that I have had to face and no matter what comes next, I know I would be ok as I came through these – bruised and weary but alive and even thriving on days.

I have not given up on life as that is what I learned from her. Her courage and determination in the toughest moments have inspired me to get back to life and try to live it in the best manner possible. I’m not successful on many days as the weight of memories is sometimes difficult to carry but I try to move forward a little each day.

Today the pain has eased and on most days its a dull ache untill something just brings everything crashing down but hopefully those days are far and few. I have been fortunate to find new love and a new family. Its not been easy for either of us but together we have pushed ahead towards a new life for us and our children. My new life partner is a strong but compassionate person who has not let losses in her life diminish her spirit.I owe much of my recovery to her support and encouragement.

I know that my late wife is with me on this journey and though I have abandoned God just as He abandoned me, I find peace in the fact that I have someone to whom I can pray to. In difficult moments I ask her to show the way forward and it almost always helps in ways that are difficult to explain rationally.

In this journey of two years I have found that grief isolates people. There were some who avoided me like plague. And yet I’m thankful to family and friends who stayed and offered support – through messages, reading these blogs and checking on me when I was down and out.

I have found that no matter what, you will be judged and that’s ok with me. I have never conformed to rules that people impose on others. It seems strange to me that there are some who think that one should be resigned to a miserable life after a loss. Moving forward is considered being selfish and self aborbed.

Though she lived for only 37 years, she lived a life that was full. She got to travel, make numerous friends and lived each day with energy and passion so characterestic of her.She became an incredible life partner, and the most endearing mother to her little boy. People who knew her best often remember her fondly and always talk about the warmth and happiness that she exuded. I know that because it came from within.

On days like this, though I battle raw grief again,I also take pride in the fact that she shared her life with me. We created memories of a lifetime. But losing her has also been the hardest thing that I have had to endure. I believe she would be happy to see me go forward and not give up on life.

I’m now the keeper of precious memories and her enduring legacy.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

The why’s

“So why do I write, torturing myself to put it down? Because in spite of myself I’ve learned some things. Without the possibility of action, all knowledge comes to one labeled “file and forget,” and I can neither file nor forget. Nor will certain ideas forget me; they keep filing away at my lethargy, my complacency. Why should I be the one to dream this nightmare?” 
― Ralph Ellison

I have been at home sick today from what hopefully appears to be a mild case of cold. It’s in the air and lot of people and kids have been falling sick. When I sit back and think how much my mind and body have gone through in the past year and a half, it gives me the chills.
But somehow, miraculously I never fell sick not even for a day. I was the primary caregiver for my wife and I just couldn’t afford to be down.

And so I slogged through work, countless hospital trips, medicines, the every day trauma of seeing the love of your life battle a deadly disease like leukemia. Now that it’s all over, and though we lost that war, my journey through dark tunnels continues. So today I finally took a sick day off and tried to give my weary mind and body some rest.

A few months back, I would have probably shuddered at the thought of being alone at home but today I’m more comfortable with my loneliness. It’s hard to not be melancholy though – the quietness, the walls that seem to reflect so many memories of the happy days gone by.

It still feels like she will walk in anytime through the door, it still feels like she’s just out for shopping and will be back before the school ends. She would have fussed over me and at the same time chided me for being so delicate and catching a cold. In all our years together before the illness she had never been sick, not even for a day. There was never a time when I had to take care of the house or our child because she was sick.

She was strong, full of life, lead a very active and healthy lifestyle and was in prime health. I could have never visualized her not being there. She pretty much ran our lives and I depended on her for everything from ordering food, buying clothes, planning the weekends and vacations, and countless other things that made our life tick.

Our life changed unimaginably after the cancer diagnosis. I can never forget the moment I got the news. I remember I stumbled and barely managed to stay upright. My mouth went dry and though I had a million questions on my mind, nothing would come out. My life will always be divided into before and after that moment.

I can never get that question out of my mind – Why her of all the people. She couldn’t have hurt a fly. No one can say for sure why such things happen. I have read much and all I have are theories. One theory says that everything is predestined, there is a karmic reason behind everything. The other theory says that not everything has a meaning.

There are some events like terminal illnesses or fatal accidents which are completely random. They represent the chaos in God’s orderly universe. This theory states that God doesn’t cause such events even though he doesn’t prevent it. This is the reason why life is unfair and the being righteous doesn’t protect you from harm.

Our bodies function via intricately complex processes that are not yet fully understood. Any aberration in this mind boggling mechanism can result in a deadly disease. I have read so much about cancer and I have more questions than I have answers.

During our lifetime millions of cells are born and die. And yet sometimes what appears to be a completely random event, a cell becomes a rogue and refuses to die. It then multiplies at a frightening pace. This is how cancer manifests itself.

I don’t know which theory to believe in. My life has been changed forever by a rogue cell. I don’t know if it was predetermined or it was a completely random event outside of God’s intervention. Every theory has an inherent flaw. I want to believe in randomness but then why is it that some make miraculous escapes from similar diseases but others can’t?

I don’t know if my search for answers will bring me peace or acceptance. I still search because someday I want to discuss these things with my son and help him cope. Now he’s too young but someday he will face these same questions which haunt me everyday.

We have both lost the woman we love the most and have to go on life’s journey without her by our side. We have been reduced to two from three and we want some answers to why our life has become the way it is now. Some will say it’s futile to search for answers and though I know we will never find what we are looking for, this search is also part of this grief journey.

Yes, life goes on in the world outside but our lives have been changed forever. I struggle with the why’s every day.

Still Nothing

I find myself awake on a Sunday morning while the world sleeps. The early morning light beckons and another day in my life is about to start but all I can think of is you and these words that came to me as dawn breaks..

Still nothing but the cold waves of grief
Still nothing but the salt water from the eyes that leak
Still nothing but an empty heart that never skips a beat
Still nothing but a silence that spreads like a sheet
Still nothing but only love that emanates for you
Still nothing but the desperation to never let go of you
Still nothing but the will to carry on without you
Still nothing but our dreams to carry me through

In retrospect

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The emptiness of my days without her is consuming me. It seems life has been reduced to an endless charade of meaningless tasks. From everything I’ve read about loss and grief, the first year is the year of hell and I’m certainly experiencing it.

There are so many firsts to get through. Initially it was waking up alone, coming home and not having her around, no messages or calls during the day and such simple nuances of daily life that we shared. As the first few months go by, the silence and the absence seems to be settling permanently, almost like creating a space in the void left behind.

In a few months, her birthday will come around followed by Nishu’s birthday. Both are going to be very difficult days for me. It’s not that the days running up to them are any easier. But just to think about those special days without her makes me shudder. And these are only the first of them in a lifetime to follow.

I’m still trying to make sense of this life. Sometimes I feel like taking a break and just doing nothing for a while. But life’s circumstances and responsibilities do not allow that. I would certainly like to slow down and listen to my inner self. I find that in the daily grind of life without her, I’m getting more and more lost.

I miss the fun and humor that was a constant ingredient when she was around. I miss the constant chatter and her infectious enthusiasm for life. We had become so accustomed to each others presence that having to live alone was something I had never even had nightmares about. Life without her simply didn’t exist. And today here I am, stuck in this passage of life alone.

I wonder how it has all come to pass. In retrospect, I had seven months to prepare but we chose those seven months to fight not despair about what was to come. Despite the fatality of the disease, I never saw her as a patient. To me it was just a roadblock we had unfortunately hit. We would keep our heads down and get through it together and for the most part we did.

In short I never had a plan B, the only plan was to beat the disease and recover our precious life together. For seven long months, it was my focus, my mission – to see her get well and get back to the life she loved so much. I obsessed over every bit of medical information that would help me get a semblance of control over the circumstances.

During those months, that is all I thought about. I read every bit of information I could find, I read about nutrition, natural cures and survivors. I filled my mind with so much positivity that it almost dulled the threat of the disease. But you can alter the reality in your mind not outside of it. In real life, you have no control or choice over what is coming. I found it the hard way.

And when the unthinkable happened, I was still in denial, and to an extent I always will be. I couldn’t foresee how one person could have so much of misfortune. I had believed in the fairness of the universe to alter the scales when it came to the crunch. But as I’ve found out since then, life is not a zero sum game. How you think doesn’t always change the reality of what is coming.

I know life goes on but sometimes when you witness so much in such a short time, it does become difficult to find any meaning in life. Perhaps there is and I will discover that some day but right now I’m far away and trying to find the path that will lead me there.

“…you have to learn where your pain is. You have to burrow down and find the wound, and if the burden of it is too terrible to shoulder, you have to shout it out; you have to shout for help… And then finally, the way through grief is grieving.”
― Jane Hamilton

Things we believe

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I often think of all the things I wanted to say but couldn’t because we were robbed of a lifetime together. But had I known how it was going to unfold in the future, what would I have said that I hadn’t already? These are of course hypothetical questions because life isn’t lived backwards, it just happens unannounced.

I’m unable to recall if we ever probed deep into the future. Her life was lived in the present, in the moment. I am by nature a dreamer, I like philosophy, poetry and the unknown. When I  dreamt about the future, it was always the other things that worried me – was I going to be stuck doing this job for the rest of my life, would I be able to manage finances for my family, and other such commonplace things.

I never worried about her because she was the constant in my life around which my past, present and future were built. She was the strong one both physically and mentally. If things like career, finances and other such stuff worried me too much, I would find comfort in the thought that we had each other so there wasn’t really much to worry about. And that’s where I always left it.

I do not remember her ever bringing the distant future into our conversations. To her future meant a little beyond the present but never much further. She was always too busy living the present and I’m so glad she did considering how less a time she had. So it was always about the plans for the week or about that vacation later in the year but never beyond it.

Living with an extremely positive person like her, it was difficult to imagine that bad things could happen to us. Whenever something like that bothered me, it never lasted long in her company. But deep down I guess she always had this unexplained fear that something bad might happen to her. I guess she just loved life too much and sometimes that can create fear. That’s the only way I can explain it.

Disease and sickness were things I wouldn’t have ever associated with her. Bad things to me meant accidents, air crash, fire and such. As far as health was concerned she was a stickler for good habits – daily workouts, no tea or coffee, no soft drinks and lots of fruits, vegetables, water and green tea. And her emotional health was anyway top notch. So with that combination, you should be living a long healthy life, isn’t it?

Turns out that life isn’t as predictable or logical as we would like it to be. Despite all the positivity, the almost divinely selflessness and all the great lifestyle habits she got leukemia – one with the deadliest prognosis, out of the blue, just like that. No warnings, no alarm bells just something sinister and dark sneaked in unannounced and took her life within seven months full of pain and anguish.

How do you even begin to understand the absolute unfairness of it? It’s something that is going to haunt me for the rest of my life. If I ever had a choice, I wouldn’t have hesitated to exchange places with her. But then that’s how the brutal reality of it is – I’m the one who is left behind to carry on without her.

It just confirms to me there’s no meaning to anything, things just happen, there is no one out there with a script. It’s a vast sea of the unknown and maybe not knowing is good for us. Positive thinking is just a hogwash far removed from reality. It may make your life entertaining for a while but will not protect you against the dark unknowns of life which might sneak in anytime.

I’m not a positive thinker, I don’t even believe in a  God. I believe that ‘meaning’ itself is meaningless. So far what I’ve seen doesn’t allow me to disregard this belief. You should live your life according to your own choices and beliefs. Because truth is, no one knows where your life is headed regardless of what you believe in.

“That was the thing. You never got used to it, the idea of someone being gone. Just when you think it’s reconciled, accepted, someone points it out to you, and it just hits you all over again, that shocking.”
― Sarah Dessen, The Truth About Forever

Disjointed thoughts

These days I yearn to go back to what our life was before this storm swept away everything I lived for. It hasn’t been that long, probably less than a year when we still belonged, when things still made sense, when there were things to look forward to and life seemed so full and content. Looking back, I realize those last few months before the ordeal began were probably one of the best in my life.

In retrospect it was all like a dream but then just like that, without any warning, it all came apart one fine day. Both of us had never spent as much as a night in the hospital in our lives till that point. She was the last person I would have ever imagined falling sick. In fact I can count on finger tips how many times she had been sick in the 12 years that we had been together.

And yet, she got inflicted with the deadliest of cancers one fine day just out of the blue. I mean what are the odds of something like that happening to someone so young, strong and positive? When you think about someone getting diagnosed with such a rare disease as leukemia, the general impression is that the person might have some ailment or family history or some such cause. But it wasn’t anything like that.

Later on in my discussions with doctors and my own research, I found that it must have developed within few weeks. It simply defies any logic, something sinister like that develops all of a sudden and the person is gone within months. I don’t think I will ever recover from the shock of it. There will never be any closure to why it happened to her.

When it came to her, I always worried sometimes annoying her. If I dropped her outside a mall on the way to work, I would call to check, if she went somewhere, I would want to know if she reached safe. It used to irritate and please her at the same time. Yet in those couple of weeks when this fatal disease sneaked in, I had no clue. I had no idea how little time I had got left with her.

These things didn’t happen to people like us, it’s something that I read or heard in the news. But it happened to us and took away the most precious thing I had. I know how futile it is to try and make sense out of it.

Yet, despite all that happened and despite the fact that my life has changed beyond recognition now and it can never go back to what it was, I feel I was amazingly fortunate to have spent 12 years with an extraordinary person like her. The way she lived her life, touching lives and spreading joy is an inspiration for not only me but every one who came in her contact. She was remarkable in every sense of the word.

Every day that goes by reminds me of what was and what could have been had she been around. Grief and sadness torture me every single moment. It becomes difficult to breathe sometimes, they say time makes the pain bearable. In that sense, I’m doing my time. I have been handed a life sentence.

When I look back, I want to remember every word that we exchanged but I can’t remember much. It’s all lost and yet immortalized in the happy, commonplace normalcy of life that we shared. It’s sacred. These days when loneliness strikes and it does often, I take refuge in the memories of the past. The images and voices so vivid that sometimes it recreates the past on the canvas of the present. Sometimes the boundaries get blurred till the stark reality of my existence takes over.

This is what grief feels like to me, someday it will become less painful and yet I feel I’m in no hurry to get there. While I carry this pain, I also carry my love. When the pain recedes, I fear if I’ll be letting her go. It seems strange that I would want to be in so much pain but then that is how I see my life shaping – around this pain not devoid of it.

The pain I feel now is the happiness I had before. That’s the deal.” 
― C.S. Lewis

The day everything changed

What I’m going to write about today is an extremely painful memory. But at the same time I can’t deny it actually happened. It is something that will stay in my collective memory forever. I write about it because it’s part of something we went through together and it is part of our fight. This is how it all started.

The day dawned clear and bright. It was a Monday and I hated Mondays for it came after the heavenly weekends. To make it worse we were just back from a lovely vacation. Yet another escape to a paradise, all planned and organized to perfection by my lovely wife. She had been complaining of fatigue for couple of weeks. I hadn’t thought much of it, guessing it was down to a vitamin deficiency or something as benign as that. What else it could be for she was an extremely fit person with a laudable lifestyle. She worked out everyday, ate fruits, didn’t drink tea, coffee or even soft drinks, never smoked. She was extremely positive and gregarious, no sign of any stress remotely.

When it came to her, it was just my confidence in her that nothing bad could ever happen to such a wonderful person. She was the most selfless and helpful soul I had met, and I believed in karma. If you did good things, you built yourself a credit which the universe repaid by protecting you against bad things. Besides she had never been sick barring the odd cold. In fact I would fall sick much more often, she called me ‘delicate’ at such times. She had always been the strong one both physically and mentally.

So when she told me she was feeling unusually fatigued, I didn’t pay much attention. Nothing looked wrong visually, she was her usual buoyant self. Then while on vacation she noticed these bruises on her legs out of nowhere. This was a sign as I would find out later that something devastating was happening within her. She mentioned this to her brother who is a Doc and he recommended a blood test.

So on that Monday, August 12th,she went for a blood test. I was still in my reverie that it was all probably nothing but in any case it was good to get checked out. I left for work with the usual Monday morning blues hoping to get though the day somehow. The thought that anything abnormal would come out of the blood test was far from my mind. After reaching my office, I sent her couple of messages to ease her mind and said I would try to be back home early.

I had no idea of the cataclysm that was about to unfold in our life. I hadn’t seen it coming. I had been blindsided by all that was good. So about midday I would get the call which would set in motion events which would eventually change our lives forever. The pathologist had called from the lab asking her to take the report and see a specialist immediately. I had little idea what could it be that made such urgency credible.

But by now it had started hitting me that something seemed very wrong. I rushed home enveloped in emotions bordering from panic to anxiety. Surely everything would be alright, they might have made an error or overreacted. I got stuck in a traffic snarl and my impatience grew. Finally I got home and found her all panicky. I was still hopeful it was nothing. How could anything be wrong with her?

We reached the hospital  to collect the report. Everything from that point on till this day is forged into my  consciousness. I saw a report called CBC-complete blood count for the first time, a report I would learn to interpret in my sleep in the times to come. I was called in and told they suspected leukemia. I can never forget the moment. If I felt like the ground moved from beneath me, I probably didn’t show it. Leukemia – a cancer of the white blood cells. My mind raced, just a few years ago I had read “The emperor of all maladies” written in such brilliant prose by Dr Siddhartha Mukherjee. It’s a biography of cancer, an anthology of mans fight against this monster of a disease.

I remember clearly thinking naively this cannot be the leukemia I had read about. It’s the deadliest form of cancer that exists. Not many survive it. But by now she had guessed something was wrong, probably my face belied me, I had to tell her. Needless to say both of us felt the devastation. How could this happen, why only her, I had a storm raging within. Few more tests were ordered and we were referred to an oncologist. I had never heard that word or at least didn’t remember if I had.

We came back home gutted beyond words. I can’t describe the pure dread both of us felt – the undeniable fear of the unknown devil. Our world as we knew it was over. Still I wasn’t convinced, I didn’t know enough about this. As always I needed to find out what this was. I sat up most of the night while she had gone off to sleep and I read. Over the next few months, I would read everything I could get my hands on-from survivor stories to intricate medical journals. Information gives me an illusion that I still have control.

I read that the diagnosis we had was extremely devastating. It was the most violent form of blood cancer that exists. There were only terrible things to read about it. Blood cells are made in the bone marrow – a highly complex and sophisticated structure. Each cell that is produced has its life and death programmed into its DNA. But mysteriously in rare circumstances, this DNA gets corrupted by a disease process. When that happens, the cell starts mutating wildly. There is no stopping it as that single rogue cell mutates exponentially eventually crowding out the normal cells.

There is no answer to why this starts happening in perfectly healthy individuals just one fine day. There are no warnings either. There is a theory which says each of us have instances of a cancerous cell mutating several times but our immune system hunts the culprit and eventually kills it restoring normalcy. However in people who get this disease, the immune system has been compromised or the rogue mutating cell has somehow been able to evade it. The result is acute mylogenos leukemia- the deadliest form of blood cancer.

Cancer is a group of diseases and many forms are easier to treat with high cure rates. However leukemia remains one form where medical science is still an underdog of the disease. There is only one cure or rather promise of a cure-stem cell transplant, the holy grail of modern cancer treatment. But the treatment is such that many people die because of the treatment not the disease. It’s a game of lesser of the two evils.

I read all this that unforgettable night and my heart stopped. I couldn’t believe what I was reading. Shock, disbelief and dread all came rushing in. By now whatever doubts I had about how serious this was had vanished. I was stunned beyond words. How could this be happening to us.? We had a normal life just a few hours back and now cancer. It was not making any sense. But unknown to me our lives had been changed forever in an instant. One ordinary instance is all it took to destroy a life built over years of love and togetherness.

I need to stop for today. Even now it’s a lot to take in. I will resume this story tomorrow for a lot has happened.

“illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”