30 March 2015

In memory of Connie Cahlil

This may a bit heavy for Monday, but maybe it is a useful disruption of work to consider something more important: life.

Prologue: My mother died of cancer at 47 years of age. I was 18 years old. Her death was not sudden, so we had a long time to talk and get used to the idea. In the end, her death relieved her from the pain. She was one of the wisest people I know, and a lot of that wisdom came from the introspection she went through as she fought for life and approached death. I was holding her hand when she died. I told her "it's okay to die now," and she stopped breathing. This point is important because we all face death at some time. Acceptance makes it easier for you as well as those around you. I often think of my death (or absence), and it bothers me in terms of interrupting my plans or enjoyment of life. OTOH, it's going to happen so it hardly seems worth fearing.

My friend Connie died from cancer a week ago, 15 months after being told that she had six months to live. I met her in 1991, I think, when she was an unemployed Harvard MBA. She was also a single, soon-to-be mother of her son Kai, who is now about 23 years old. We spoke over the years about many things, but our emails over the past year were the most interesting:

Me to her [May 20 2014]:
I think you may want to read this.
Her reply [May 20 2014]:
David, that essay is so wonderfully thoughtful and well-written, thank you for sending the link!

These issues occur often in discussions especially now when I appear well even as I can feel the cancer returning. Recently people have been saying things like, “You made the decision not to go through chemo back when the doctors thought the cancer would return quickly. But now you have new information – it is months later and you are still well. So you should re-visit that decision.”

But the reality is that even though I have “well-being” – I smile often, I am happy, I do as much as I am physically able – my body is not well. The decision not to have chemo was made exactly so that I could have a few months of well-being – and that is the experience I am having.

But people misinterpret “well-being” as evidence that the cancer has gone away. It hasn’t.

After the surgery in January the doctors estimated my life expectancy, without chemo, at less than 6 months. Now here we are in the 3rd week of May. Based on what I feel happening in my abdomen it seems like the doctors’ estimate may still be accurate – time may be very short for me now. That thought does not fill me with dread, or fear, or depression.

There are very, very few people who can really ‘hear’ me say where I am at with all of this now. I made the decision not to go through a long, slow, uncomfortable decline to death. I have no interest in revisiting that decision.

Last Saturday a friend invited me to go to the “Rejuvenation Festival” at the park down by the river. On the spur of the moment I said yes. There were reggae bands playing, and we kicked off our shoes and danced barefoot on the grass until I was too tired to dance any more. The muscles in my legs were sore all the next day. It was worth it. (smile) I am enjoying being alive.

Thank you for sending that email, David, it is very timely.

Love, Connie
Her to her mailing list:
Subject: It's a miracle!

Today, June 23, is my 61st birthday.

For most of the past six months I did not know if I would live to see this birthday.

Things could change at any time, but for today – I feel well enough to celebrate!

If you would like to participate – just dance a little, and send some joyful thoughts my way. (smile)

(Yes, for those who know me well and are surprised at the header for today’s post – LOL!)
I replied:
It's life.

Every year is a miracle, especially when you consider how we complicate our enjoyments.

Enjoy the cake :)
She replied:
Yes! You are one of the few people who ‘gets’ the joke – “It’s a Miracle!”

Even now I receive emails from people saying Don’t give up! You can fight this! Miracles do happen!

The reality is that life is a miracle every day and I don’t need to be ‘saved’ from cancer to enjoy that…

Love, Connie
Connie remarked at the cooperation of these "masses"
of hummingbirds outside her Santa Cruz window.
They were probably hungry due to the drought :(

Connie started a blog (tagline: "A belief is nothing more than the result of a decision to stop asking questions") just before she found out about her cancer, as a means of preserving the dialogue on depression that she was having with a young hacker (Aaron Swartz killed himself around the same time). That blog turned into an archive of her thoughts on life, cancer, community and death. It also has an amazing post on her 40-year battle with depression -- a battle that she eventually won (AFAIK).

My mother was not exactly depressed in her life, but her other four sisters often said she attracted bad luck. Although my memory of our times together have faded, I do think that she ended up enjoying herself more often (I remember her saying "well, I like pesto so I'm going to eat it from the jar" and "what's the point of having best dishes if you don't use them?"). I know that she did not want to die, but I also know that she made the best of what time she had, even with the pain and bickering (everyone has an opinion).

Connie was thinking similar thoughts in this excerpt from her last post:
Sometimes when I am in town I run into people I know and they exclaim, “You look great!”, and they are surprised that I am not confined to bed at this point. (Well, actually, maybe they are surprised that I am not dead at this point.)

Honestly, I think a major reason why my quality of life is so good even now is because I DO NOT TAKE DRUGS.

My healthcare team is once again repeatedly suggesting that I take morphine. I’ll take morphine when I have reached the point where all I want to do is curl up on the bed with my mind lost in a confused daze. Because that was my experience of being on morphine when I was in the hospital.

And I’ll add – a hospice worker implored me not to write about this on my blog because it might ‘discourage people from taking morphine when they really need it’.

Here is one way to figure out if a hospice patient might ‘really need’ morphine: Ask them if they think they need it.

Seems simple enough but whenever I really get specific with my healthcare team about my symptoms at this point the response is almost always, “You should be taking morphine!”

So then I check in with myself and say, “Self, do you think you should be taking morphine?” So far the answer keeps coming back, No.

And it actually creates tension with my healthcare team which is unfortunate.

Sometimes in quiet moments I contemplate the reality that death might be quite near now. And when I think about how it all fits with the trajectory of my entire life, and the naturalness of death as a part of life – I am flooded with a deep sense of peace, of stillness, of gratitude. It is the outcome of years spent learning how my mind works, and how to explore and question my own thoughts, and how to identify when Ego has taken control with its fears and incessant chatter, and how to go beyond all of that to find the inner wellspring of peace. That peacefulness is so far beyond any experience that any drug could provide, I cannot even explain it in words.
May she rest in peace... and her example remind us of where peace resides.

1 comment:

  1. I thought I should share this info with you so that it may help several who may like to avoid chemo especially if diagnosed early. This is possible in developed countries such as yours since health care, diagnostics are well developed unlike in India. Please see these links:



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