How to Exist OK: What It's Like Knowing You'll Die of Cancer.

How to Exist OK
What It's Like Knowing You'll Die of Cancer.

"I’ve realized that it’s not my job to make anyone feel good. It’s my job to be honest, I'm sworn to be honest!"

"How to Exist OK" is an article that attempts to figure out how to exist OK. In it, writer,  biz man, computer consultant, artist, and existential Humpty Dumpty John Silva sits down with a sage of some sort—monks, ministers, theologians, doctors, psychologists, philosophers, geeks, bartenders, centenarians, and more—and asks them how to survive being human, how to navigate the world while lugging around three squishy pounds of consciousness in a rapidly decayingb bag of skin.

I myself have had a brush with death, I survived a stroke. During the time I was out, I knew where I was when I saw my beloved late grandma, who told me I had to go back to the land of the living, she said, "You have something important to do ( as the oldest son )."

I don’t quite know how to broach this, but in the days between when I spoke with Antonio, (  &, specifically ) Jovina Silva and Joao (John) Pina ( my dad, mom & uncle, respectively ), after an absence of some 12 years, through my world travels, for this installment of the blog and when we were ready to publish it, they died. She was 89, he was 75,  &  82 yo, respectively. They knew the end was near. It was something they had grappled with for a long while. Jovina, her husband and her brother were first diagnosed with cancer almost a decade ago, and this past spring, doctors, one of which is my uncle's older son, Jose, told them the cancer has metastasized, the disease had spread to their organs  i.e.: liver, ribs, lymph nodes, lungs, and brain etc. But their death shocked me nonetheless, probably because that’s what death tends to do in societies like ours, where one of the only two sure facts of life—we are born; we live, we will die alone—isn’t well integrated into our conscious experience.

I came to see and meet my dad, mom and uncle, again through my travels, some four decades ago and have return to see another cousin, my uncle's younger son, Joao who is a clinical psychologist that studies drug addiction, resulting death and mortality, to help me deal with this situation. After hearing them explain how their proximity to death had changed their understanding of life, I asked if I could interview one of them, whomever might be the spokes person.

What follows is a short conversation as translated from Portuguese ( Krioulo, broken Portuguese ), I had with mother while she was taking a day off from a round of extremely painful experimental treatments, her addiction to pain pills. In between coughing fits, medicine dosage and sips of water, to wash it down--she spoke with disarming confidence and clarity—not because she wasn’t fearful, sad, medicated, or angry, but because, it seemed, she had lived with the specter of death long enough to make it, her teacher. As I said to my brother the night Jovina passed: Dying sounds scary and mysterious and hard and weird, but if anyone knew how to do it, it was Jovina. After all she will be with her beloved mother and father, again.

VOICE: I once heard you respond to someone’s question about whether your condition was terminal by saying something like, “Well, all of our conditions are terminal.”

Your answer exposed how little we tend to consider our mortality. How has your mortality salience evolved over time, from before cancer to now, and how has it affected your feelings about death?

Jovina: When I was first diagnosed, I was 74 yo, round about. That’s an age when people encourage you to start looking at death, most women die around, avg 82 yo ( men die around, on avg 72 yo ). There’s so much coming from the medical community, especially when you’re so young at heart, so old in age and spirit-- pushing you not to think about death. It was this huge taboo. Even asking the question felt like I was doing something wrong. Also, culturally you don't talk about breast cancer ( or postrate cancer. Your dad and uncle are dying of postrate cancer. )

Asking what question?
Like, what happens in death?
What if I die?

I was constantly being pulled away from it. But I think my exploration really deepened when the stage four diagnosis came because I didn’t feel an insane amount of fear of death immediately. I felt fear of going through the death part of life.

So, death wasn’t scary?
Dying was scary?

Yes. I’ve had some psychedelic experiences as a result of my meds, with spiritual guidance, not necessarily in a party environment, and that stripped a lot of my fear of death. This kind of treatment isn’t for everybody but my personal experience was similar to what a lot of people describe as a dissolving of the ego and superego.

But, on a more conscious level, I saw a close friend of mine die about two years ago from cancer, and there were a lot of beeping machines around, and they weren’t in their home, I saw my mother die of old age, in a nursing home and hospital as we turned of the machines that kept her alive for the last time, it became terminal and honestly, that terrifies me more than the moment of death. That’s my biggest fear. It’s been about half a year since I was diagnosed with stage four, and I’ve had so many waves of different experience, some very positive and some very negative. I was scared that, because I don't live in my home country and am far from my family, I would be handed off to strangers and die alone.

However, my friends and community who are here from the old country, and my new friends and milieu, have proven me so wrong. I don’t know where I would be right now without them. I’ve always found people to help take care of me.

There are many days when I’m in full body pain, and it’s a lot to ask someone who has a job to stay up with me all night, so I can go to the bathroom or have water or take my medication. For me, that seemed like a burden, but none of my family and friends have ever made me feel like a burden. At no point have they abandoned me. The same for your younger brother.

Has thinking a lot about death, and considering its possible imminence, changed what it feels like to be alive?
Has it changed the quality of your consciousness?

A lot of small things I was always worried about, like my looks and certain social standards, have fallen away a little. It has removed a lot of filters, in that I’m a lot more authentic to myself. I no longer take other people as a part of my own image.

Would you describe it as feeling more clarity than in the past?

Absolutely, and that has had repercussions in my relationship with my. late mother and other people who don’t necessarily view life and death the way I do. I’ve realized that it’s not my job to make anyone feel good. It’s my job to be honest.

How do you make sense of the role of pain in life, and do you see it as a valuable part of the human experience?

This is a good time to be asking this question because I’ve just gone through like at least two weeks of pain. I lost my mind. It was not pretty. It wasn’t the sort of pain that allowed for wisdom.

Someone recently told me that “Pain is a beautiful teacher, but only after.” There was no point during that pain that any amount of meditation or affirmation would work because pain brings you down, down, down to the roots in a way that really shows you the boundary where mind, body, soul, and spirit come together.

Pain is a very narrowing force, right?

It focuses you in a way that doesn’t allow for the luxury of perspective and openness.

The only thing that helped me was focusing on my breath and not fighting anymore. It helped take the edge off but did not make the pain go away or lessen it. Humans do a lot of pushing and pulling, and at moments I have learned to stop that, to just allow experience to be there. The big lesson from this has been that I deprive myself of the life that I still have by pushing the pain away, because pain is a huge part of my life right now, there is no denying that. But pushing and pulling takes away all my energy.

When I’ve heard you talk about death, you speak about these heavy topics with reverence, but also with a certain amount of levity, as if this is also not that serious.

How have you found that balance?

I don't waste time comparing myself to people anymore. Not doing that takes away a lot of unnecessary suffering. When we feel like we’re deprived of something we’re supposed to have, something we’ve decided we’re supposed to have because we think others have it, that's when things tend to become “serious.” Life is too serious to take seriously.

Clearly being diagnosed with cancer has been a transformative experience for you.

Does real change require such enormous and consequential life events?
What allows for real change?

What makes us change is when something is taken away from us that we feel entitled to. Our bodies are rented. This day is rented. Nothing will stay. And if we live from a mindset of “I am entitled to this,” “I deserve this,” at some point we get stuck trying to hold onto something that is not ours, that is no longer there, and have to change.

How does one exist OK?

Surrounding ourselves with love is important. We are tribal creatures. But that's not something that comes by obligation. It comes by nurturing relationships. I’m doing the craziest treatments right now that, alone, I would never have been able to do. Having the support and love from my tribe has meant everything.

This interview has been edited for length and clarity.

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