What did I do when my father was dying?
By: Liakatbir Singh
Tags: Death And Dying, Multiple Myeloma, Fatherhood, Optimism, Cancer

Exactly 119 days ago, on May 15, 2021, my father, a multiple myeloma patient who had undergone six different lines of therapy, found out for the seventh time since relapse that his disease had progressed. This meant that he was dying. And we needed to access the seventh line of therapy so that he could defeat death again. We couldn’t get access to the said therapy in time, and hence he couldn’t survive. I’m going to reflect on what did I do in the next 81 days until August 06, 2021, when he took his last breath:

I had a conversation.

Before I talked to him or my family, I had a conversation with myself. I don’t think I did this very vividly — I feel that more clarity should’ve been achieved on that front, as I now believe this conversation was critical. Mostly pondering on what really is the current situation? What is the most rational way of thinking about the next steps? Where are my limits, if any? What does my father’s presence mean to me? What does death, not his death, but ‘death’ mean in this specific scenario?

I denied

I did NOT accept that he may die. This was particularly a very hard one, but I excelled at it because my father had survived stage 3 multiple myeloma diagnosis, a liver failure, three complete respiratory failures, and six lines of therapy of multiple myeloma. We were so used to hearing the words by the doctors, “It’s the time to take him home and try to make his last days happy”, that we had stopped believing them. So it was relatively easy for me to think that he will not die — it was not a facade or a lie I was telling myself — I genuinely, sincerely believed that this is another one of the hurdles and we shall overcome it, and we will soon be back home and continue to live our happy life very soon. After having had that one-time conversation with myself about the meanings of stuff, I internally denied even that tiny chance of losing him — HE. WILL. LIVE. There is no other possibility. This is very, very difficult and this approach does make it insanely challenging to accept his death later on, but when he’s alive, you’re not even thinking of it.

That being said, this ‘denial’ helped me do things that I would not have done if I had accepted that this was the end. (I shall write more on what exactly I did in another article)

I did NOT believe the doctors.

Oops! Did I just say that? Please don’t use my words without context here. In a severe case of cancer like my father’s, a doctor is the only individual with the knowledge, expertise, and equipment critical to saving his life. I can not fathom ignoring the role that various doctors played in his survival and treatment. But we need to believe that when a doctor says that it is the end, it is probably not the end! I have empirical evidence to prove that from my father’s MM prognosis. I’m not sure how accurate I am when I say this, but it seems like the doctors focus too much on statistics than acknowledging that every individual is unique and a world on their own. It makes sense because they have to treat thousands of patients in their careers, and the system needs to optimise their time as it’s highly likely that we will always have fewer doctors than patients in the world.

It really helped me listen to a doctor just like I would listen to an acquaintance, a colleague, or a friend — not like I would listen to an authority figure whose word is my command. I would then later on either talk to another doctor or use the internet to inform myself more.

It also really helped me here that almost all the time when doctors shared these hard words, we were able to have clear, honest conversations with my dad, who would assure us that he will survive this. This really did all the mental work for me in the past. This last time, he was not fully conscious to say this, which made it significantly harder for me.

I looked for good people and kept them close.

No words can describe how grateful I am to the people who held my hand (figuratively) during those 81 days. Some of them were family & friends, but some were complete strangers who happened to come in contact with me during my search for treatment for papa, especially those who are doctors. We are a part of a very complex social structure, and almost everyone is entangled in their own life so deeply that for them, their problems are bigger than any other problem. This is very normal, and we need to acknowledge this, have empathy and help as much as we can.

By help, I don't mean literally giving something. While I acknowledge that financial support, and advice was very critical during those 81 days but sometimes a phone call would feel like a warm hug, an email would feel like a bright ray of hope in a dark cave and a motivating message on WhatsApp gave strength to carry on.

There are very few people who are kind enough to think that way, and it really helped me to actively identify those people and constantly stay in touch with them about every little idea or thought that I was having. It helped me gain clarity and confidence on the path I was creating for myself in search of treatment, and it felt like I was not walking alone on that path, but someone was holding my hands. I was lucky enough to have a few such people in my journey, but it was worth a million even if I had only one.

I did NOT believe in God’s will.

Oh wow, how do I even start writing about this! I have had hundreds of pieces of advice from friends and family which pretty much went like, “We need to accept God’s will”, “Everything is pre-written, we can’t do much”, “He’s suffering so much, maybe God wants to end his suffering”, “Maybe he did some bad stuff in his past lives, and this is the result of that (a.k.a. karma)”. I think if God is real and God’s will is real, then there’s nothing I can do to change it. If it’s a hoax, which seems to be more likely, then I should listen to these suggestions with one ear and blow them out of my nose in a sarcastic “Hmph!”.

It really helped me to believe that most of what is happening is a result of either my actions, the actions of my family, or the healthcare system including the doctors. At one point, we have to acknowledge that a significant portion of the events is not in our control but simultaneously acting with an assumption that I am in control and when I am not, I will gain control soon — helps make rational decisions, remain sane and think straight.

I looked for alternatives.

I believe that life-saving treatments exist only in modern medicine. That being said, we still need to acknowledge that other treatment options exist and can be very effective. All his cancer-survivor lifetime, my mom and dad consulted ayurvedic and naturopathy practitioners & dieticians, attended yoga retreats, practised pranic soul healing etc. There is no way to quantify these alternative treatments and therapies' role in his survival with cancer. Still, I think we need to stay open-minded and listen to any advice that exists in favour of alternative therapies. Although, I was and am strongly against any therapy that suggested stopping or reducing allopathic treatment.

I acknowledged that the four of us were alone.

It was my mother, my brother and me with my father, 24 X 7. Some people came with their suggestions, concerns, love, care, worry, grief, fear, interest, happiness, amusement, adoration, compassion etc. and then they left. Some people called to express their suggestions, concerns, love, care, worry, grief, fear, interest, happiness, amusement, adoration, compassion etc. and then they hung up. Some people wrote emails, some replied to my emails. Some never replied, some never called. Some wrote messages, some never responded to my messages. Out of these, some suggestions were life-changing, some were BS. On the one hand, it is imperative to identify the contributions of others, but at the end of the day, it was my mother, my brother and me with my father, 24 X 7.

It really helped me acknowledge that the ‘good people’ I had identified had their limits. It was important not to have feelings of possessiveness or big expectations from anyone other than the four of us; as mentioned before, everyone has their own life to live, which is a big and challenging task. Internally acknowledging this resulted in a belief that I had ‘control’ over my actions. These words may sound harsh and ungrateful, but again, these are not to be taken without context. To repeat, I am indebted for life to those who helped.

I believed in the team.

My mother, who seems to have some supernatural powers of bravery, is the epitome of courage and optimism. My brother, who seems to be significantly more intelligent, stronger and smarter than me, is a great example of holding everyone and everything together. On top of all this, I fall short of words when I intend to describe my father's willpower, sacrifice, and strength, who survived 15 painful years of multiple myeloma. The four of us worked as a very effective team, supporting each other at every moment when each day was slightly worse than the previous one.

Believing in this team of four gave me significantly more strength and motivation than I could have possessed by myself.

Not only in these 81 days but during my whole life of almost 29 years, I have counted on this team’s collective strength numerous times. Today, I feel like this highly efficient and effective team doesn’t have a captain anymore…