Every 6 months I find myself a fronte praecipitium a tergo lupi (between the precipice and the wolf).
Earlier this week I had my checkup at the cancer clinic which means needles and people palpitating my lymph nodes and checking my scars to see if they are sain. What are they looking for? Signs that the cancer has returned or (worse) spread to some other part of my body. It's a necessary exercise but one that is neither physically nor psychologically comfortable.
The wolf is the trepidation that builds as checkup time comes closer and closer. At that time I wince when I get my little email reminders and I hesitate to look too closely at my agenda. Something about having all those normal activities (especially the ones that are future-oriented) surrounding the one that could tank all the others is profoundly disturbing. The phrase "man plans and God laughs" comes to mind.
The cliff, of course, is a recurrence of the cancer and having to go back into active treatment: surgery, chemo, radiotherapy and drugs that are far worse than the ones I already take. I've learned a great deal about the practice of serenity from AA and my religion but, hey, I'm human and the idea of doing chemo again sends chills down my spine.
Not because of the nausea or the hair loss or even the pain which could be controlled by opiates but the helplessness. Engraved forever in my memory is the day I fell in the kitchen and couldn't get up.
Which just goes to show you that I am still working on trustful surrender. I know in my bones that we are all just one small step away from complete dependence on others and losing the illusion that we are in control of our lives and have the last word about our fates.
A few weeks ago I went into Paris to attend a Death Cafe (it was actually called a Life and Death Cafe and it was sponsored by the Unitarian Universalist Fellowship of Paris). Why would I go to such a thing given its close proximity to my 6 month dance with the wolf?
The most important reason was to find a place where I had permission (nay, where it was encouraged) to talk about death with other people. Since I was diagnosed in 2012 this is the one topic nobody wants to talk about with me. Nobody. I hear a lot of "It's going to be OK" (you sure about that? Define "OK" and are we talking about you or me?); and "You're not going to die" (absurd because we all have an expiration date).
On the other side is my bank - the one I've been a loyal customer of for many years that the US considers "offshore" - well, they don't seem to agree that everything is OK. They wouldn't give me a 9 year mortgage (much less mortgage insurance) based on my condition. It was cash on the nail, my dear Madame.
Talked about mixed messages.
So it was something of a relief to have someone other than the committee in my head to talk to about these things. The other reason I appreciated the meeting was that I wasn't entirely sure how I felt about death and this was a chance to examine my own emotions around it. And what became clear to me as I passed from one discussion table to the next is that dying doesn't bother me nearly as much as the idea of suffering and helplessness. For me the precipice is not death, it's what happens to you on the way.
It is knowing in my bones that there is a point of helplessness - complete dependence on other people - where someone has to be there to pick you up off the floor when you fall, or bring you your pain medication because you can't get it for yourself. As much as we try to control things ahead of time with living wills and so on there comes a time when we are no longer in charge and must rely on the patience, empathy, goodwill, (and dare I say it) love of the people closest to us (and in my case a benevolent universe) to get what we need. That fact that I am not entirely sure of these things means that I don't entirely trust people or the universe. There is doubt and because there is doubt, there is fear.
Ah, now we are getting somewhere. Is there an antidote? Is this something that needs to be "fixed"? I'm not sure. Pema Chodron said that "Fear is a natural reaction to moving closer to the truth." Alas I no longer remember what she meant by that so I'll be reading her book again. Something about leaning into emotions (even negative ones) and not running from them.
Last word. At one table someone asked me a very interesting question. He said that since I had a closer acquaintance with the idea of dying (closer, he said, than anyone else at our table) could I say something about what I've learned so far? As I recall my answer to that wasn't very coherent so I will try to do better here.
I don't think I truly understood what it meant to be alive until I had to consider death up close and personal. My priorities changed overnight and 99% of the things I thought were Very Important before my diagnosis, don't even make the top 5 in my life today. In fact I look back and can't believe that I cared so much for stuff that seems so petty in retrospect. And I wonder at the people around me sometimes as they stress over deadlines, getting a raise, the shenanigans of their boss, answering their email in a timely manner lest people think poorly of them and so on.
Think about that - whatever is going on in your life right now, if you knew you had a good chance of dying in the next few months or years, would any of those things be a priority? No. So, why are they a Big Deal now? What you see clearly after a diagnosis is that you were already living in fear and under the tyranny of expectations (ones that you impose on yourself and that you let others inflict on you). What I'm saying is that there is a certain freedom that comes with the realization that you and all the people, institutions, countries, cultures and so on around you are mortal and destined for the dustbin. If I gained a new appreciation for suffering, I also shed a lot of fear and anxiety. Chodron gently suggests that we all "Lighten up!' and she's right.
That's one gift you get with your diagnosis - the gift of perspective- but there is another. At least this is what happened to me after I found that lump and got on the cancer train.
When I was very young, I remember moments when I simply marvelled at the fact of being alive. That I was here and could see, breathe and think and play kick the can with my friends. And somewhere along the line life lost its wonder and days, months, years became something to simply get through (preferably properly anesthetized with large quantities of alcohol). I had some vague notion that if I just muscled my way through life that I would arrive at some destination in the oh so distant (but surely much better) future when I would finally.....
That was never clear. I notice that I am not the only one to do this kind of magical thinking. People laugh sometimes at those who believe in an afterlife (heaven) but they don't see that their own thinking includes a heaven on earth some time that is not now: next month when they can finally go on vacation, next year when they have enough money to quit the job, a decade or more in the future when they can finally retire or the kids go off to college. Whatever.
It's when you finally understand that that day might never come - when you give up living in the wreckage (or paradise) that is the future and can ground yourself in this moment - that something very profound can happen to you. For me it meant that I got back that wonder I felt as a child at just being alive.
Yes, there is still fear. No, I don't particularly want to go through chemo again nor do I want to die. The result of my tests made me and my oncologist happy - no recurrence of the cancer and so the wolf/precipice is now a safe six months away when I have my next control.
Right now as I tickle my keyboard and look out over my garden I am positively overflowing with gratitude for this moment and so very happy just to be sitting at my dining room table, sipping my coffee and writing this. It really is a miracle.
I only wish that I would have your grace should I find myself in a similar situation to yours, Victoria. Beautifully put.
It's strange, I'm never stressed out when I have a bone marrow or a blood test to check me for cancer recurrence. I think part of it is that I know that if it came back, I would know before everybody, because I know the symptoms all too well and they are crystal clear.
On the other hand, like you, the idea of going back to chemo sends chills down my spine. 3 years later the trauma has not left me.
It's funny this thing of speaking about death. It's the same for me. One night at thanksgiving, we had rented a big house with 10 friends. One evening, 6 of us were around the table and for some reason an older woman of our group start asking me about death. Around the table, everybody agrees that it is a fascinating and very important and interesting subject, even more so when somebody who has seen death closer than anyone else on the table is present. So we start talking about it: 5 mins later, everybody but the older lady who had originated the topic and myself, had disappeared.
Another anecdote, I have a friend who studies ethnology. She had an assignment paper to write about death, and more precisely what somebody of her entourage "thought" about death.
All her relatives and friends refused to participate, being too uncomfortable to speak about it. Even her boyfriend refused. It made them too worried to think about it. Crazy huh?
So Celia told her, you know, Loic is more or less an expert on the subject, and she came talinkg to me.We talked for 4 hours and it was awesome.
I have a different opinion than you on what the diagnosis changed for me: my priorities in life remained the same, I guess because I was already on a spiritual path for some years and had already shifted my priorities. If anything, it solidified my choice of spiritual practice, and my choice of how to live my life.
It really helped me appreciate life a lot more though. I really found the joy of living inside me, like you, that's for sure. I'm much more observant of tiny things and much more in awe at these things than before.
I speak a bit about my views on death here (where I actually mention you and our discussions :) :
Malade du cancer: être heureux ne vous sauvera pas la vie... mais!
@Loic "Le monde (et la leucémie) se fout de ton désir brûlant."
Love it! Yes and I really admire the way you expressed it in your post. The happy happy joy joy thing makes me want to punch somebody. :-)
Speaking of not talking about death, wy spouse won't even talk to me about writing a will which I think we really should do.
@bubblebustin, It's kind of a work in progress, Suzanne. Sometimes I grumble a lot. I've been depressed and out of sorts. I'm with Loic - chemo seriously sucks. It is godawful...
Wow z. I'm not usually speechless but your words leave me in awe of your strength, courage and chutzpah.
Thank you for sharing so openly with us.
Victoria I like how you talk about all the issues surrounding your cancer and thoughts of death (you always write so well). I is difficult to find the prognosis. I guess the prediction is good for another 6 months but I am sure it is difficult to live with this court of cancer where the sentence can change at any time. My heart is with you kermit
I have a relative who was very recently diagnosed with cancer. They are getting on in years and what I find fascinating is that they cannot and will not look at death in the face. They're that frightened.
I lost friends in high school (auto accidents). I sat by my first wife's bed as she passed at the age of 34. I buried my mother a few years ago. In the past 6 months I've lost a half dozen former colleagues from the last company I worked at in the States.
The truth of our lives is all around us all the time. There are no guarantees, are there? Except that, yes, we will die.
The way I see it, it is how we choose to live that is the important thing.
Life is, indeed, such a miracle. This remains true whether we can more fully appreciate it or not.
You have women me up as you write that some people don't believe in haven but do believr in a heaven on earth that is the dream of "when" and "eventually'
So, I will go and think about that.
!! That was riddled with auto correct errors. Apologies!
Yes. I have people tell me they know I will "beat this", and that I am "so strong" all the time, which is another form of avoidance of talking about and admitting the certainty of death.
I (humbly) point to a blog post I wrote about what it feels like when people talk about how "strong" I am in the face of cancer. Maybe you will understand?
Thanks for sharing your thoughts with us. Coincidentally on the same day as I read them, I listened to this 14-year-old rerun on American expats in Paris, www.thisamericanlife.com
"I don't think I truly understood what it meant to be alive until I had to consider death up close and personal. My priorities changed overnight and 99% of the things I thought were Very Important before my diagnosis, don't even make the top 5 in my life today."
Thank you for sharing your thoughts on life and death. I truly admire your bravery and perspective!
Beautifully written, beautifully lived in a way you never wanted to live. Been there, too, and know exactly what you meant in each sentence. We have the gift of life today...we need to savour it.
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