Well, here’s something you don’t read every day…
I almost passed this one by, thinking that it wouldn’t have much to do with my ongoing cancer issues. Instead, it’s the closest thing I’ve yet gotten to understanding what’s been happening in my head over the last year.
You see, in many ways I looked far healthier mentally at this time last year, when I got my diagnosis of OM2.
When I was diagnosed with OM in September 2016, I understood it as if it were a big hit in a taekwondo sparring match. I took the hit, kept my cool, assessed that the instant damage was not too great to keep going exactly as I had been before, and immediately began marshaling all the forces I could bring to bear–both internal and external–to address the attacker as swiftly and mercilessly as I could.
But I was learning (the hard way) that I had to view all the possible outcomes. Since I was often alone at the most critical moments of my treatment–there’s no blame in that statement at all, it’s just the facts of juggling a child and a husband and work and travel when you chose to leave your nearest family more than 600 miles away–I had to learn how to study about all my possible outcomes, and to be prepared to mentally and emotionally contain those outcomes when the word finally came down. I learned that it couldn’t matter whether I had family with me or not; I had to be prepared for myself.
And I was. When the word for OM2 came down in December 2016, I kept my stuff together, got out of the appointment, had a short hard cry in the van, and went home to celebrate a lovely (and rare) Christmas with my family. Yes, I wasn’t alone on that particular day, but even as I cried I sat in my passenger seat in the van, and my husband sat in the driver’s seat. There was no physical comfort beyond taking his elbow on the walk out, and splitting a chocolate bar once the crying jag was over. Had I not been too dilated to drive, my husband wouldn’t have been there with me anyway. I had already studied, already contained the possibility that I would receive an OM2 diagnosis; the cry in the van was a brief form of permission to feel sorry for myself. But by the time my husband turned the key in the ignition, I was ready to go have Christmas with my family.
And it was a good Christmas. Yes, it was sad at times. Yes, my family was a little shell-shocked. I was keenly aware that my family was looking to me to set the tone of their visit. How do we do Christmas now? Do we grieve? Do we pretend like this big bad news didn’t happen? Do we act like this is our last Christmas together…ever? I like to think that I managed a very sane, middle way–something along the lines of, “Let’s do Christmas the way we always have, because that’s good, but if somebody needs to cry let’s keep it short, shall we?” (During the difficult process of helping me study for, decide on, and apply for a clinical trial, my sister summed up and intensified this path with the edict, “The first one who cries gets a sock to the arm.” We simply had too much hard work to do to allow crying then.) Even with the sadness, it was a good Christmas.
And even as I missed my family when they left, I still had enough presence of myself to be grateful that they were gone. I have a profound need to be alone. I score so far out on the Introvert part of the Meyers-Briggs that multiple proctors of the test over the years have been taken aback. “I’ve never seen somebody score that far out on the Introvert scale before!” That fact makes me very difficult to love. It takes people years to figure out that yes, I can love you like my life depends on it, and yes, I can also do very happily without you for days at a pop. So when my family left after Christmas and my daughter went back to school and my husband left for work, I breathed a huge sigh of gratitude and relief into my empty house and sat down to write.
But then I began to settle in to being alone…and discovered that now, I’m never alone. It’s like trying to be alone in the house when I know there’s a prowler on my property. I can even hear him trying the doorknobs. With OM2, I’m never goddamned alone, and the thing that keeps trying to invade my space is literally malignant. The fears and worries never let up. It’s a nonstop mental parade of “when do I have to schedule this test” and “should I really be drinking coffee” and “what’s this new spot on my arm” and “this mindless TV show that I’m trying to relax with is about to play the goddamned cancer card, isn’t it?” (Just do that exercise for a week: notice all the times cancer gets trotted out in every TV show, movie, or book. It’s staggering. Hell, just notice the number of times eyes get used in advertising, and not even for eye-related products. I can’t see an eye in an ad without thinking, I wonder if that person has gotten themselves checked.)
For a while on the Castle Biosciences website, alongside their information on their Decision DX test, they showcased testimonials written by various OM patients and family. The 1A and 1B folks wrote about how grateful they were that their cancer was found and tested. The only OM2 testimonial was written “In Memoriam.” It told how it took the patient four or five months to quit feeling sorry for herself; how she took up long distance running; how she ran half-marathons and did fund-raising while she metastasized; and finally how bravely she died. Subconsciously, I set her experience up as a sort of benchmark for my own experience. I think I thought that if I didn’t take as long as she did to fully accept and move past my diagnosis…if I didn’t take those four or five months to get busy and quit feeling fearful and find my inner drive again…I would have a better chance of surviving. I remember thinking, “I can understand it taking that long to get up and over this diagnosis, but I’m glad I won’t be wasting that long.”
Then I spent the first several months after diagnosis in constant-crisis-mode, dealing with the heavy travel schedule of the clinical trial and the side effects of the medication I was on. For the first several hours of being alone–every time I was alone–I would bawl until I exhausted myself. I simply had to vent the things I’d been through. Not just the diagnosis, and the medication, but even the biweekly bloodwork and the imaging and the travel. I’m the kind of person for whom just being among people in a strange big city requires serious detox. And I was adding that on, willingly, to the already-overwhelming physical and mental experience of cancer.
I began to worry that my hardwired need to be alone may not be a great survival mechanism. After all, look at me–every time I was alone, I came unglued.
But I also knew from years of hard experience that trying to distract myself with people and hubbub was doomed to backfire. It drains me. It makes me crazy. I wind myself so far up to deal with people (even people I know and love and trust!) that I sometimes sound unhinged even to myself. Some people need to be told, “You’re drunk, go home.” I need to be told, “You’re overclocked, honey, go be alone…even if your family needs you.”
So I kept worrying, “What do I do? Do I trust my ability to remain alone despite this malignant bastard prowling the yard? Do I try to surround myself with people (shudder) and hope that the prowler won’t try anything in a crowded house? I’m already at a year past diagnosis, and my head still isn’t settled about the turn my life has taken–what does that mean for my chances?”
And then I finally found the Six Kinds of Loneliness.
Usually we regard loneliness as an enemy. Heartache is not something we choose to invite in. It’s restless and pregnant and hot with the desire to escape and find something or someone to keep us company. When we can rest in the middle, we begin to have a nonthreatening relationship with loneliness, a relaxing and cooling loneliness that completely turns our usual fearful patterns upside down.
There have been times over the last year when I’ve been alone, and lonely, and after the crying, a strange sort of humor has crept in. I couldn’t call it “acceptance”–this year has been a crash course in the five stages of grief, and trust me when I say I’m barely out of “anger” and moving into “bargaining”, and I still cycle through all of the stages on a minor scale daily. But if not “acceptance,” what was that feeling? Was it helpful? If it comes back, what should I do with it? Even describing it as “humor” was too strong a word. What was it? How did it feel? How can I describe it?
Yes. That. Right there.
I could’ve written about it for another year and not arrived at that phrase. (Thank God Buddhism has been around for a thousand years or so, and put in the work for me.)
Imagine my shock to read about the six kinds of loneliness and discover that, to some extent, I’m exhibiting all six.
“Less desire” to try to evade my painful feelings? Yep–I’ve found myself grateful for the ability to simply get home so I can cry. I’ve hated crying my whole life. I’ve never wanted to do it. But when I allow myself to actually sit with this turn my life has taken, I cry. And that is good. I breathe in the facts a little more strongly each time, yet cry less. I’m taking a shorter time to hit that moment when I think, “Yep, this sucks. Oh well.”
“Contentment” with the knowledge that everything…even the things I love the most…will be taken from me? Yep. I’ve even managed to write letters to my husband and daughter to be read after I’m gone. The letters are far from finished, but they’re the toughest and kindest things I’ve yet written. I found even the idea of writing these letters impossible a year ago.
“Avoiding unnecessary activities” was the roughest one. Shouldn’t I bang out the work on my novels? I might have so little time left! Shouldn’t I fix all my beneficiary stuff? Shouldn’t I purge the house? Shouldn’t I come up with a bucket list? Why don’t I want to do much (if any) of these things? Is that a sign of deepening depression? Shouldn’t I get help for that… Or maybe, if I can sit quietly with my prowler and a cup of coffee, isn’t that the only thing I should be doing?
“Complete discipline” is a path that, perversely, the combination of anxiety, meditation, and the martial arts prepared me for. As an anxious, silent child, I learned that 1) everything was impossible, and 2) everything had to be done. So I internalized the earliest truth I ever learned, which was, “How do you eat an elephant? One bite at a time.” I learned how to get dogged, to keep coming back to a difficult task. Even if I felt like a failure, even if it had been years. Just come back. One bite at a time. And meditation is the same way. Lost your calm? No sweat, just come back. And taekwondo taught me the same wisdom through forms. This form looks impossible? Nope. You’ll get there. Just break it up into smaller chunks, and you’ll eat that form, one bite at a time.
“Not wandering in the world of desire” is another one that I’ve been friends with for years. I first noticed it with food. It didn’t matter how good I felt, I wanted to eat. The moment I became tired, bored, overclocked, stressed, happy, sad…my answer was to eat. And I discovered that, the moment I gave into the impulse, I mentally checked out. The food would disappear without any enjoyment on my part. It was as if eating were the only form of mental rest I allowed myself. Wouldn’t it be better if I gave myself a mental rest, and skipped the eating? I worried so much that my impulse not to eat over the last year was a sign of depression, or a deathwish. Instead, it’s me, noticing “the world of desire” all over again.
“Not seeking security from one’s discursive thoughts…” I’d noticed that even my impulse to blog had decreased drastically. I worried that it was a bad sign, that perhaps my depression had become so deep I didn’t even want to write anymore. Well, I’ll let Pema sum that one up for you:
Another aspect of cool loneliness is not seeking security from one’s discursive thoughts. The rug’s been pulled; the jig is up; there is no way to get out of this one! We don’t even seek the companionship of our own constant conversation with ourselves about how it is and how it isn’t, whether it is or whether it isn’t, whether it should or whether it shouldn’t, whether it can or whether it can’t. With cool loneliness we do not expect security from our own internal chatter. That’s why we are instructed in meditation to label it “thinking.” It has no objective reality. It is transparent and ungraspable. We’re encouraged to just touch that chatter and let it go, not make much ado about nothing.
Cool loneliness allows us to look honestly and without aggression at our own minds. We can gradually drop our ideals of who we think we ought to be, or who we think we want to be, or who we think other people think we want to be or ought to be. We give it up and just look directly with compassion and humor at who we are. Then loneliness is no threat and heartache, no punishment.
Cool loneliness doesn’t provide any resolution or give us ground under our feet. It challenges us to step into a world of no reference point without polarizing or solidifying. This is called the middle way, or the sacred path of the warrior.
It’s also called “life with cancer.”