Sunday, August 22, 2010

Cocooned in a Coma

For some weeks now I have been thinking of my late father's passing. He passed away on 26th September 2009 at the age of 75, and as the first anniversary comes round I find myself thinking about him a lot more. Sometimes late at night I remember the events that led to his demise, the memories are so real and fresh they bring tears, and I feel myself awash with grief and sadness again.

My father, Harbhajan Singh Gill, went to get his pacemaker checked at the National Heart Institute in Kuala Lumpur on August 25th. He loved that place, and having retired as a senior civil servant, he especially loved the benefits he received and believed in the care as being top notch. He certainly wouldn't have settled for anything less. :) He had had a triple bypass done there too, and a pacemaker inserted, and used to joke with us about his "ticker" and how it would give up on him some day.

While waiting for his check up he actually had a heart attack of some kind and died. By the time this was discovered and he was revived, almost 10 minutes had elapsed, and so my father's brain, having been starved of oxygen, was effectively dead. Because the resuscitation team had their duty to perform, his heart was revived but he was in a comatose state. I found out about this 2 days later, when my father's second wife told my brother in KL, and he called me in Singapore, and my sister in Melbourne. We began our respective journeys to KL with very heavy hearts, unsure of what we would find.

My parents, having separated when I was very young, had never really gotten along, and I was raised practically singlehandedly by my mother. Over the years I had had several encounters with my father in which some healing had occurred, the kind of healing that a child requires when knowing that a parent is unable to love them, for whatever reasons...religious differences, acrimonious relationships, memories of the past, pride...whatever the reasons were, I received very little love from my father, but I knew deep down in my own heart that I loved him.

As I journeyed to KL I found myself wondering about whether my father would be able to communicate with me. Would I be able to speak with him, and square the past, or would he be slipping away and was the ultimate end, death, imminent? When I got to KL I went to see him, and discovered that he was well and truly cocooned in a coma. The kind of state of limbo where his body was being kept going by various machines but his brain was non-functional. What conversation could I hope to have with him then? It became a monologue of sorts.

It was also an emotional roller coaster of grief and sadness, feelings long welled up and hidden away came to the fore, and for the first couple of weeks my every moment by his bedside was one of tears. Heavy, fat tears that fell so fast I could not stop them, neither did I try, because deep down inside I knew that I had to let them out. Whatever little time I was given by the ICU staff, by the demands of other relatives and friends and the knowledge that I was, in essence, an outsider...whatever little time I had with him was time that I used to tell him I loved him, to thank him for the gift of life as my father, to bless him with peace, and to say "I forgive you, Pa, please forgive me."

My father remained in a coma for 32 days, passing away eventually on 26th September, the day after I left KL and returned to Singapore to be with my family. I watched him over 32 days deteriorate from a fairly muscular man to one that had hollowed cheeks and poor muscle tone, swollen hands and feet as his kidneys failed and an opportunistic bacterial infection took over. How sad to watch someone wither away. I wondered then if it is better to have someone go suddenly and then deal with the grief of that abrupt departure, or to watch someone go slowly, feeling tortured in the process, imagining that their loved one is also being tortured, wondering whether to hope for a quick end to suffering on all sides, or to soldier on bravely come what may, even if the comatose state were to last months and years.

The thought crossed my mind that perhaps in this last stage of his life I would be given the chance to look after him and be the doting daughter that circumstances had not allowed me to be. In some idealistic rosy eyed moment I imagined myself lovingly tending him through the last few years of his life in a coma...but then reality intruded, in the form of my sensible family members who told me I wasn't well enough to undertake such a job, and it wasn't for me to decide these things anyway. It was for my father's wife to decide on his care. And the questions about his care troubled us all a fair bit. The thought proved daunting for some, and rightly so. The task of looking after someone in that condition is not an easy one. In the end, it did not matter because my father passed away without leaving the ICU.

I know being in a coma isn't quite a "chronic" condition in the sense that say, diabetes, or Crohn's disease or SLE is...but I wonder what it's like to be cocooned in a coma for months and years, seemingly perpetually asleep, and never in hope of awakening. Being transformed over time, slowly deteriorating into a state of being the living dead before the heart gives out and one is released into death, and the life hereafter as one believes. What is it really like to be in a coma? I hope never to find out.

While the doctors told us that brain function tests showed no brain activity, and they told us he couldn't feel anything, I never really believed that. While they couldn't quite say with certainty whether he heard us or not, they told us he could not respond. I never really believed that he couldn't hear us, and as for response, once while I read to him his eyes opened and he looked right at me...I have to say it gave me a fright! This was also explained away, but I didn't believe it. I didn't want to believe that it was pointless, I guess.

In some selfish way I am grateful for the 32 days that my father spent in a coma, because it gave all of us in the family time to come to terms with his impending death. I was able to be by his bedside, and I spoke to him, I sang to him, and I read to him, believing that he could hear me. Perhaps his auditory senses weren't functioning because his brain was gone, but I believe that there is more to man than just the physical. I believe there is the soul/spirit man too. That part that lives on when the physical body is gone. I like to think that part of him was listening. I like to think that part of him responded. I like to think it all meant something to him. And yes, it meant a lot to me. Perhaps it was all something I conjured up because I needed to believe that he knew how much I cared for him. But I don't think that in itself is wrong. People who say "you did it for yourself" miss the point...yes, I needed it too. Possibly a bit more than my dying father did, because I continue to live, and the living need hope, and healing, love and peace, a little more than those who leave this world.

I do hope and pray that my father received all of that from me as I watched over him. I do hope he is in a happy place. I pray for that. I do remember him with sadness, and grief, and longing, and pain, and the gamut of emotions that make us human. I am working towards remembering him with joy. In the early days after he went into a coma, and after his passing, the question that plagued me was "Pa, did you love me?" Months later, as I prepare for a simple memorial for his first anniversary on 26th September, I find myself asking "Did I love you, Pa?" and as I move from one question to the other, I am finding further closure and healing as the answers are "Yes" and "Yes". Yes, he loved me, and I loved him. I can let the memories of the past rest in peace, I can live in peace, and Pa, wherever you are, peace and love to you too.

Thanks for reading,

Saturday, August 7, 2010

A Stroke of Bad Luck

Last night, as my husband and I were entering the lift to our apartment, we found ourselves with some of our fellow residents. A family of 4 was with us, and my husband began a conversation with them. Yes, we're the sort of folks who like to talk to our neighbours, and fortunately our neighbours don't seem to mind. Not too sure what choice they have stuck in there with us but it's just our way of being civilized. Much nicer than staring into space avoiding eye contact.

This family was one that I remembered from the time we'd first moved into our apartment 15 years ago. We left and lived elsewhere for about 6 years before returning here, and have found that while some people have moved on, there are still some others who have remained in the condominium, and so they are our familiar faces, and the friendly ones who recognize us and who are happy to chat with us.

As my husband chatted I looked at the family, and smiled politely. The mother was doing the talking, and the daughter responded to questions, but the man and his son were quiet. Toward the end of our brief conversation, during which time I became animated upon discovering that the daughter was studying English Literature, the father looked at me and in that moment of eye contact between us, I learnt something new about him.

His eyes were red rimmed and watery, and his gaze was weak, and as I looked at him I took in the shriveled right hand that was visible to me, and the support that his son gave him...and it dawned on me that he had had a stroke. Somewhere in the interval between the time we left our condo, and the time we returned, the man that I remembered as being a lovely, chirpy, energetic, sweet man had undergone a transformation so severe that he would never be the same again.

A stroke is a terrible thing that can befall anyone, young or old. Somehow, blood supply to the brain is interrupted or disturbed and brain function suffers. Sometimes the damage to the brain is so severe that the person can die. Often, the damage leaves a person disabled to some degree. Some can walk, and eat, and speak a little after therapy, many can barely manage basic functions. While the stroke itself is fairly brief, it's consequences are long lasting and permanent. Persons with strokes face permanent disability, and must then live trapped in damaged bodies that require the help and care of others to some degree. Independence, something so prized by us all, goes out the window, and the stroke victim must rely on others for a range of things, depending on the severity of the stroke. Personal dignity and space need to be reinterpreted to allow for the intervention of doctors, nurses, therapists, and family members who will assist to help make life livable, hard as that may be to imagine.

Uncle, as I call him, could walk with some help, he looked like he could function a fair bit on his own, but in the look that we exchanged, I realized that he could not connect verbally with me. Perhaps he might have said something eventually, but he could not participate in the conversation at that point, he could not share his views, or comment on someone else's. Whatever was meant to have passed between us remained unsaid, lost in the ether where thoughts unvoiced and hopes unheard linger, never to emerge.

We reached our floor, and wished everyone a good weekend and happy National Day and exited the lift. Because the wife was the vocal one, our attention was drawn to her, and as the doors closed it was her face that I saw. She seemed tired. Her daughter had looked tired too. It was a tired family. And yet, there was a spark of something about them. They had come home together as a family from somewhere...I'm not sure where, but they had driven home, and Uncle had been with them, and even though they looked tired they were together.

That togetherness struck me. In the face of adversity, especially the adversity of illness, families either gel together, or fall apart. Illness makes or breaks them. There's nothing quite like chronic illness to bring the substance of a family to the fore. In the cauldron of suffering, pain, tears and frustration, the essence of each individual is tested and purified, and the dross rises up. The selfishness, the irritability, the anger...everything that shows up the lack of love within each of us is drawn out of us. Do we skim it away each day and begin anew the task of sacrificial love, or do we drown in the dross and find ourselves paralyzed by our weaknesses? This then is the challenge of life with imperfection staring us in the face. Imperfection in others, and imperfection in ourselves.

Uncle and his family have their act together, at least it seemed so to me. A stroke of bad luck befell them, but I think they will pull through. I do hope that my next encounter with him will be different. I hope that we will have a little more time together. I hope to hold his hand and look him in the eye and in that glance say "Hello". I hope to have the grace and compassion to know if it's better to leave him alone. I hope and pray that Uncle's remaining years bring him more joy than sadness, and that in the end, he will know that whatever his body has become, his was a life worth living.

Thanks for reading.