A trip from Kingston to Toronto has a finite beginning and end. Even a longer journey from Jamaica to Sri Lanka or Australia, which has stops along the way, still has a start and finish. There is only so long that you have to put up with the inconvenience and discomfort of airport security, the airplane noise, the cramped sitting and the tiny toilets. When you lose a loved one, the grief experience is less like a journey and more like the waves on a seashore…ever present, with a ceaseless ebb and flow. At low tide the sadness fades into background noise and you can remember a loved one without tears, and summon laughter over happy memories. At high tide, the aching sense of loss can be overwhelming, and even tears freely shed are not enough to fill the hole in your heart.
Thirteen years ago I lost my father to metastatic lung cancer. It has been to date the most significant loss in my life, and my grieving began not when he died but when he was diagnosed. It started with the knowledge that I now had an expiration date on the time left with my father. I woke up in the mornings feeling an unbearable weight on my chest and an overwhelming bleakness in my soul. It took me days to recognise the sensation as utter sadness and desolation at the realization that no matter what decisions we took from here on, there was nothing we could do to change the ultimate ending. My father would die from this illness. It was a dark time. Then as now, I turned to written words to try and find my way back to the light. I started by writing my father letters which I would like to think brought him some measure of comfort, as they helped me to share things with him that were easier to write than say out loud.
As I got used to the heaviness, it became easier to carry, and the sadness was tempered with an overwhelming need to make the most of what time we had left. I focused on what I could do to fight the overwhelming powerlessness I felt in the face of the unrelenting march of time and the cancer that was taking my father away from me. In the earlier stages, there was more busy stuff I could do like using my knowledge and connections as a physician to figure out the best ways to get various medical tests done and to fill his prescriptions. Later on, as it became clear that the aggressive radiation and chemotherapy had failed to improve his prospects, I found myself in uncharted territory because I had no clue how to help my father make peace with his Maker, and die with dignity. It was not something I was ever taught in medical school, and a good death was not something I had witnessed thus far in my career. At that point, as the daughter of two librarians, I turned to books to help me find my way through this uncharted territory.
There were two books that were like water in the desert in the way that they helped me to conquer the challenge I faced. The first was Elisabeth Kubler-Ross’ “On Death and Dying” which I had heard about as a medical student. I had purchased the book some time ago, and I realised the time had now come to read it. That one told me to provide an opening for conversation with the dying, and listen to what they shared.The second book I stumbled upon while lurking around the aisles of the pharmacy waiting to fill a prescription for my father. It was entitled “Sacred Passage” by Margaret Coberly and this one advised me to be fully present with the dying, and to focus on helping them to find peace of mind which would allow them to leave this world with dignity. Apparently, when people are nearing the end of life, these are the things that relieve suffering. Those two books introduced me to some of basic the principles of palliative care, and my father was the first person I practised them with.
In 2006, when my father was dying, palliative care was not something that was easily available in Jamaica. We had no access to compassionate doctors who did housecalls, or to a holistic approach to pain management and end of life care. So in the last 2 months of his life, my father alternated between excruciating pain, and morphine induced stupor that caused his dry lips to stick to his teeth when he smiled. There came a point when all I could do was sit on the floor beside his couch and keep him company, and, to do my best to not fight with my mother ( as was my father’s constant request) over aspects of his care that she and I disagreed on.
The grief of witnessing his suffering greatly outweighed the earlier grief at the thought of losing him. By the last days, I knew that I would gladly bear the grief of losing him, if it meant he was no longer suffering and I prayed for him to find the light at the end of the tunnel. So on that sunny Monday afternoon when he drew his last breath, the pain in my heart was numbed temporarily by gratitude for the end of his suffering. Knowing he was finally at peace, and that he had departed as he had wished, at home with only his wife and daughters to witness the transition, gave me the strength to take the next steps in the grief journey: informing family and friends, and planning the memorial.
The busy work of the rituals by which we mark the death of a loved one provides a distraction from noticing the emptiness in one’s life that used to be occupied by the loved one. Perhaps that is part of the purpose of these rituals and ceremonies. We survived all of that, and then with no distractions we were left to cope with the grief of loss in all its tear-stained, snot-nosed, gut wrenching agony. It would be an understatement to say that my father’s death changed me and my life, in ways I could never have imagined.
Over the past 13 years since his death, I have tried to fill the gap he left behind by taking the grief energy and transforming it into a whole-hearted commitment to providing for my patients the type of end of life care that my father never got from his doctors. The two books that helped me find a way to accompany my father on his last journey provided the foundation for figuring out ways to help patients with terminal diagnoses. I started providing home visits for patients who needed it. I attended every palliative care seminar and workshop that was available to me in Jamaica, and in so doing found an incredibly supportive network of amazing doctors and nurses committed to alleviating suffering. I started conversations with my patients about death and we talked about what we would want when our time to die came. I was rewarded for my efforts by being given the privilege of accompanying many of my patients, and their families through that final journey, to the farthest point that we the living could follow them to. Last year, as we marked the 12th anniversary of my father’s death, I felt a sense of peace and found a sense of purpose in my grief experience as it was the crucible from which the physician I am today emerged. It seemed like a long and difficult journey had come to a meaningful end, and I could put away the luggage.
Then near the end of the summer of 2018, my father-in-law was rushed to the emergency room after having had a debilitating seizure. As the episodes of seizures continued, and the requisite investigations were done to determine the cause, it became clear that the underlying cause was lung cancer which had spread to his brain. I was the one who first informed him of the results of that fateful test that confirmed the suspected diagnosis. The memory of my breaking the news to my father about the massive fluid accumulation in his lung which heralded his lung cancer echoed loudly in my heart, as I tried to break the news as gently and honestly as I could to the only remaining grandfather my children had.
A flurry of further tests and visits to specialists followed for my father-in-law, and a plan for surgery to remove the seizure inducing brain tumour was made and executed. This gave him a respite from the seizures. At this point I was grateful for all I had learned about the value of palliative care since my own father had faced a similar terminal diagnosis more than a decade ago. So I urged, encouraged, cajoled and nagged my husband and family by marriage into requesting a palliative care consult before making further decisions about treating the lung cancer that had given rise to the brain tumour, and that would ultimately be the cause of his death. My father-in-law’s resilience and ability to recover from life threatening injuries were legendary, and he took that “never give up” attitude to his lung cancer diagnosis. His fighting spirit, an ever supportive family and good palliative care allowed him to survive months beyond what statistics would have predicted for that stage of cancer. He celebrated Christmas and New Year, a Father’s day and a birthday. I was grateful for the lessons learned on what I believed was my completed grief journey with my father, which allowed me to provide meaningful support to my family by marriage during this difficult time. Little did I know…
As the weeks turned into months, my dauntless, ever smiling father-in-law’s cancer continued making its presence felt, in the weight loss, the poor appetite and the slow measured pace of his gait when he walked. As I watched his decline, the scars from my previous journey down this road throbbed and threatened to break open. Images of my father wasting away on his grey couch at home flickered in my memory and merged with the images of my brave father-in-law following a similar path but fighting every step of the way.
In the latter stages of my father’s illness, twice a day, before and after work, I would faithfully visit him, and often would bring a bar of Dove Silk chocolate which we would share. Sugar was banned by my mother as something that would feed the cancer so the chocolate was our little secret. Those visits were the posts around which the rest of my day was constructed. I watched my brother-in-law faithfully retrace the same steps, minus the Dove bar and my heart broke for him. The grief from past loss surged and amplified the grief of pending loss in a way that caught me completely off guard.
On the night my father-in-law died, it was my mother-in-law who called to tell me. We had spoken a little earlier in the night, and given that he appeared to have taken a turn for the worse, we agreed that she should come in to Kingston early the next morning to see him. The phone rang an hour later, and when I saw who was calling, my heart clenched painfully as I answered. The only word my mother-in-law said was my name. She sobbed from the depth of her soul and that said all that needed to be said. I remembered hearing the same heart rending cries from my own mother 13 years ago, and my heart broke again along the old scars, as well as in new places as the waves of grief approached storm surge intensity. The morning after that phone call, I called my daughter in Canada to tell her that her Grandpa had died. As she cried on the other end of the line my mind went back to a memory of the same child at 6 years old coming home from school to learn that my father had died. I remembered her crying all the tears I could not cry that day.
Weeks later, as I stood beside my husband as he delivered the eulogy for his father, and fought through the tears to do justice to the memory of his father’s life, I remembered with painful clarity 13 years ago almost to the day, standing at the podium at the Mona chapel with my sister beside me, fighting the tears to do my own father’s memory justice. The memories of past loss combined with the present and ongoing experience of loss created a swell of grief that knocked me off my feet the way an unexpectedly large wave at the beach will knock you down. Memories of the past juxtaposed with more recent events have created a current of emotions that surprised me with their intensity. It was hard to separate grief for my father and grief for my husband’s father, and in the end, it did not matter. They are all simply waves of grief over what is lost, what can never be again, and for what could have been but never was, and ultimately the end of possibility for anything better in these relationships that are ended when a loved one dies.
Just like the waves on the seashore these waves of grief are ceaseless. For me over the past two months, because the waves have been higher, and closer together I find it harder to keep my feet stuck on solid ground. My eyes leak tears whenever I have a quiet moment of solitude…often in the car, and in the shower. Images of my father and my father-in-law flicker on the screen of my memory and bring an unexplainable lump to my throat, a tremor to my lips, and the familiar burning in my eyes that heralds the onset of tears. Grief is not, as I once imagined, a journey that has a beginning and an end. It is an endless tide that ebbs and flows and connects the memories of the past with the scenes of the present. It becomes a part of our lives to be carried with us for the rest of our days on earth
Learning how to cope with the waves of increasing amplitude and frequency, and, to recover my balance when they knock me down has been the challenge for 2019, as I mark the 13th anniversary of losing my father. The first lesson I have learned is to accept the wave like nature of the grief experience because being caught by surprise makes it harder to keep one’s balance. The second lesson is that sometimes we have to succumb to the wave and go down, as our eyes and nose and mouth fill with salt water and just hold our breath until it recedes. The lesson becomes easier to learn if I remember that it is the nature of waves to have peaks and troughs, and that the peak that knocks me off my feet will be followed by a trough where I can regain my balance and prepare for the next peak. I also have to remember that the conditions affecting the amplitude and frequency of the waves will change, and hopefully there will be times in my life, when the waves will only lap gently at my feet, instead of threatening to knock me off them.
The final lesson is that we do not survive the storm surges alone. We have to link hands with others and reach for a connection that grounds us to the stable earth and higher ground to avoid being washed away by the rising waves…be they be made of water or grief. People we love, and who love us, a sense of purpose, and the memories of the departed etched into our hearts…these are the things that sustain faith that our human existence, our joys and our sorrows have meaning especially in the times when we find it hard to see that meaning. It is through this faith that we ground ourselves and survive the waves that threaten to knock us down when a loved one dies.