Lessons from my father’s battle with terminal Illness

A side effect of being alive is that bad things happen.

Sometimes bad things are acute, like losing a job, sudden death of a loved one, difficult breakups. Sometimes bad things are chronic, lingering for years with little to no hope of ever getting better. These chronic tragedies affect us differently than the sudden ones, and require a special kind of resiliency to survive.

While speaking with friends and family dealing with Covid, I can’t help but compare what every one is living through to what I’ve lived through the past seven years of my dad’s illness. I recognize elements of the endless grief I have felt in the words of friends describing their experiences of the past 8 weeks.

Surviving long term traumatic period has a nuance to it, that only those of us who have lived it can understand. Anyone who lost someone to a long term illness can instantly recognize what I mean – when grief becomes a part of your existence, you need to learn how to find joy even when everything is awful. I feel with Covid, many of us are going through this nuanced experience of trying to be OK in the face of lasting and unpredictable sadness.

My dad became ill in 2013 – we didn’t know what it was or that it was terminal until late that year. And since then my family and I have been riding an emotional roller coaster that fundamentally changed the course of our lives and who we are as individuals. I would like to think, ultimately, for the “better” – if better is defined as more resilient, compassionate and determined. Along the way I absorbed some hard lessons that are ironically helping me live through Covid with my sanity intact.

The first lesson of dealing with long-term, terminal illness is recognizing today may be the best day there ever will be. I know at first that sounds like a bad thing and when I shared this insight with others, they also saw this lesson as pessimistic. And when you fear the future, perhaps thinking that this bleak day is the best seems very negative. Yet, as you live through the long-term, gut wrenching scenario fully out of your control, not knowing what life will be like a month or a year from now, knowing that TODAY could be the best day you will ever have is a liberating thought.

That’s the difference between an acute, singular terrible event and one that lasts for a long time. With a single tragic event, you KNOW that things must get better, but with a chronic crisis you never know, things may actually get worse.

If my dad had simply died seven years ago, it would have been one of the worst days of my life. And every day after that perhaps would have been somewhat better. But because he was only diagnosed with cancer, that only deteriorated over time, those 2-3 weeks following his diagnosis, when we were all incredibly devastated were actually the best he would ever be. We didn’t know it at the time how fondly we would look back at those early memories at the hospital. And how desperately we would want to have them back, to have him back, the way he was in 2013.

And once we recovered from the immediate shock of his diagnosis, the period that followed, was actually beautiful in retrospect. We were sad, we were mourning but we were together and he was aware and hopeful. What is truly awful is that we didn’t know at the time that we were living the best days we would ever live together as a family – my mom, my dad, my sister and I. We were eagerly wishing away those early days in 2014 to have more certainty, to have permanently better news that never arrived.

Covid is not a terminal illness, things will get better globally, for sure. Still, we don’t know how long it will last and how it will affect us individually in the long run. Some of us will be better than OK when we come out of quarantine and others may fall ill emotionally or physically. And in these times of long-term uncertainty and sadness, the most liberating thing to do is give ourselves permission to celebrate and appreciate possibly the best time of our remaining lives. Of course, knowing fully well that if and when things do get better, life can be that much sweeter.

The second lesson I learned while living with my father’s illness is that we need to always acknowledge and grieve for what we have lost. Grieving is crucial to moving on from any loss. Unprocessed and unacknowledged grief festers and manifest itself in weird ways, long time after the events have transpired. I understand that everyone grieves differently but fundamentally: when we lose something, we all need to mourn that loss fully. Allowing ourselves to feel emotional pain is difficult but it has to be done because our loss stays with us until we are able to let it go.

We mourned each time my dad took a step down in his condition; each time he relapsed, each time he had surgery, each time he lost a little of part of him physically or mentally. We are still mourning and there is much loss ahead of us. This continual mourning is an exhausting process. Yet, It. Must. Be. Done. There is no way around it. Believe me, I have tried and it doesn’t work – the only way forward is to feel the loss, so we can make room for joy again.

Covid has cost us a lot. I see posts on social media downplaying sacrifices that accompanied Covid as a way to rally the folks. But grief doesn’t work like that. Knowing someone else suffered more doesn’t reduce our own pain.

We all need to take the time to truly grieve for what was lost as a result of Covid. Vacations with family, dinners with friends, the missed hugs and kisses, the walks, the celebrations, the trips to the beach – these are not trivial and meaningless. These are the building blocks of life that mean everything and their loss need to be felt and mourned before we can move on.

When we live through a chronic tragedy, we feel we must wait for a better future, for things to calm down. But in reality, we have to move forward with our dreams even when it is tough to do so. The instinct to freeze when faced with hardship is so strong. We can feel paralyzed by the fear of the unknown, the loss of predictability, and the unwanted change forced on us.

Unfortunately, the reality is that we can’t stay in stasis until it’s all over because it could be months or years before our circumstances improve. We have to move towards the life we want and the goals we want now, even when it feels like our worlds are falling apart. Even small steps forward today can pay off greatly in one month or two years time. Chronic crisis makes crisis an every day part of life and the only choice is to live with and make every effort to thrive.

Finally, living through something that has the power to hijack our entire consciousness teaches that whatever it is, the tragedy is just a part of the tapestry of life and not the entire life itself. In the past seven years, while I faced one of my biggest catastrophes, life continued with it’s regular cadence of normal, extraordinary and devastating.

No matter how overwhelming a tragedy seems, they do fade in intensity in time. Life continues to unfold, full of possibilities and setbacks. While the tragedy deserves it’s place in our lives because it is important, so does everything else like joy, laughter, love, friendship, adventures, learning and cocktails.

Published by Pvot40

I blog about people who are approaching or living midlife to the fullest.

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