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May I Remember Never to Forget

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“We seem to live in a world where forgetting and oblivion are an industry in themselves and very, very few people are remotely interested or aware of their own recent history, much less their neighbors’. I tend to think we are what we remember, what we know. The less we remember, the less we know about ourselves, the less we are.”

– Carlos Ruiz Zafón

By Mark Silverstein – Patient
By Mark Silverstein – Patient

When was the last time, if ever, that someone healthy (besides perhaps, and only just perhaps, the people closest to you) asked you what you learned from cancer. Or were interested in the lessons, wisdom, understanding that came from your journey. At first opportunity didn’t turn the conversation away to something more “normal“. I often tell my clients who have not been through a cancer diagnosis that if I could impart some of what I have learned through this journey, in a way that they could actually understand and make their own, then I believe I would be doing good work. But I have come to the realization that it is much tougher to communicate this “knowing” …and that I’m not sure the healthy actually want to know. Even many of the diagnosed seem to forget, and allow themselves to go back to sleep – time makes everything recede, our culture surrounds us like a hood thrown over our head, the people and events in our daily lives keep us too busy, and our own need to once again feel like the others plays on us like a game of tug-of-war. All of these things, individually and combined threaten to erode the lessons learned.

One exercise in a first year philosophy course had the students ask the question – if one hung upside down, blindfolded, prosthetic wings attached, and so on.. would one actually know what it was like to be a bat. For some reason the lesson stayed with me through the many years since university, seeping into my view on many topics, but recently I began to consider it more seriously – How my experience, and those of others I have met, had created its own language. Or perhaps more accurately, its own framework of understanding.

I remember, almost immediately after my return to work (in what now seems a distant life), going to a sales kick-off in Las Vegas. I felt like a Martian. I spoke but nobody had any interest in talking about what I had just been through, and to be honest I couldn`t understand them much either. In fact, over those few days I began to understand that many of the things that mattered to them didn’t really matter much to me anymore. Afterwards, what began to sink in was that I was now different in some way, that what I had come to know through the experience of cancer had set me apart. That I was no longer in step with the multitudes, but had become cleaved off through my experience.

This was brought home to me recently during the support group I lead for advanced cancer patients. A man in his mid-fifties, with no treatment options left to him, stated in the most certain and at the same time the calmest manner possible, that he wished he had been diagnosed in his twenties as he would have lived his life much differently. There was a clarity that what he had valued had been, not necessarily wrong, but perhaps misguided. There was an element of shock in the room, more I think because of the bluntness of his statement, but eventually everybody nodded with some recognition of understanding. That statement, uttered amongst a group of healthy people, I am fairly certain would not have been met with same quiet understanding.

Which leads me to the one piece of the “new wisdom” and understanding that now drives my life more than anything else. I know something now I could not have known before my diagnosis. And what was that piece of wisdom? What I found to be one of the most profound shifts was my understanding of and relationship to death. That moment before diagnosis I guess in some way I still felt unreasonably immortal (I was 45), or that somehow I could actually affect the course of all this. After that day in December 2010, when I was first diagnosed, I knew different.

I just didn’t understand it  at the time.

It was only once treatment stopped that I realized that this was a concept to be mourned, grieved over. The lightness of life had seemingly disappeared in one momentous day six months prior, but I didn’t catch up to it until after raising my head after chemo to look around at what actually had happened. The loss of this and so many other things seemed at times overwhelming. Grieving challenges you to relinquish some part of yourself even before you are sure what will replace it. And the only way to get through loss is grief. But once the grieving was over, and acceptance set in, I found that all my senses were different. My sense of what was important, sense of time, feelings of gratitude, and the understanding of what I was no longer willing to tolerate. I now find conflict intolerable and more often than not, a waste of my precious time with those I love. Now, when angry, I give it the death test. Will I actually remember this on my death bed? And with limited amounts of energy, I thoughtfully navigate around those who only drain it, and focus on people and things that give me that energy. All of these equations, and so many more not listed here, transformed how I am in this world.

Being spiritual is not by definition about religion; spirituality is about being close to your true nature, to your own truth. And it is not just one thing, it has pieces to it that create the whole – a connection to your core self and what brings meaning to you, a connection (on a soul to soul level) with a few others, and a belief that we are part of something bigger (nature, god, the universe). These connections transcend suffering and help us to find meaning in our lived experience, help us to find peace and to live well. So when we journey through a cancer diagnosis – the existential threat, the losses that accumulate, and the process of grieving those losses (which I hope to write a whole other article on) can often lead to a spiritual crisis. Your spirit, essence or core self, is what your heart tells you is true. The inner conflict the journey causes may feel like you are changing from what you always were, but to my mind, you end up moving closer to who you really are.

If we can remain open to the lessons and the changes that a cancer diagnosis brings, then the process we move through from ‘what was’ to ‘how things will be’ can cause a philosophical shift in our understanding of life. As Viktor Frankl suggested, confirmed through his own experience in the concentration camps, the only real control we have are the choices we make in the situations we face – I chose to be open to the learning, I chose to keep the lesson close to my heart, and I choose everyday not to forget what I have learned.

I was born & raised in Toronto Canada, and currently reside in the suburbs with my wife and two step-children. In December 2010, at the age of 45, I was diagnosed with Stage 4 SLL and proceeded with 6 rounds of FCR. I had a reoccurrence late last year, and after several months of watch & wait, I began treatment with Ibrutinib this past August. Prior to my original diagnosis I was an account manager for a global IT company – I was laid off soon after my return from chemo and decided to go back to school for psychotherapy. I currently have both a private practice, as well as co-facilitating a survivor group at the local hospice. In addition, I facilitate my own wellness support group for people with an advanced (metastatic) cancer diagnosis.

If you have comments or would like to contact Mark directly, please email him at [email protected]

Originally published in The CLL Tribune Q2 2016.

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