In Buddhism, there is what’s called the Noble Eightfold Path: Right View, Right Aspiration, Right Speech, Right Action, Right Livelihood, Right Effort, Right Mindfulness, and Right Concentration. The theory is, follow these eight precepts and you’ll gain Nirvana.
It’s easy for me to talk about these things in theory, but in practice it’s a slog. I knew all about these Rights, rationally. But nothing could prepare me for really learning them on a visceral level. To be really honest, I don’t think my practice had much tooth at all until cancer happened. Call it a “graveyard meditation” if you will–but man, nothing forces your spiritual work deeper than to hear the words, “Put your affairs in order.”
This post is about one of those “Rights” up there: Right Speech. Keep in mind, a “right” is in no way a “moral given” in the way we Americans view the word. It means “Right” as a moral imperative–as in, “You’ve got a job to do, kid. There’s the path. Now follow it. And kid? Get the lead out.”
I can’t say I’ll get to all these Rights before I die, or that I’ll manage even a few lower-case rights, or even that I’ll stay on the path. Life has no guarantees except change and death. But I’ve managed a few successes (if you can call being bitch-slapped by Life a success) along my way thus far. Here is one. More will, I hope, be coming.
For many months, I had an unfinished blog post staring at me from the depths of my WordPress draft folder. Even as I wrote it I recognized the mindset I was in, the way I might recognize a particularly nasty ex-boss from across a crowded room: the sour self-pity. The bottomless beckoning of cynicism. The childish drive to lash out at others who aren’t perceived as suffering. The title alone will tell you how I felt that day: “Losing.” I even chose a photograph of dice as the art for the post.
If that’s not an unskillful way for anybody to feel, let alone a cancer patient, I don’t know what is.
I’ve learned in really visceral ways that the universe is listening to how I speak about my life. When people ask how I’m doing, I never say, “Fine.” Because, let’s be honest here, I’m not. I haven’t been within hailing distance of myself for years now. And I refuse to lie to anyone or to myself. Lying by saying “I’m fine” is a violence to others and to my experience.
Now, to be very fair, no one (including me!) wants to hear the “organ recital,” either. I’m tired of living it. And hearing too much about it actively scares other people. It confronts them too closely with suffering. So I’ve learned to say with a smile, “I’m hanging in there.” It’s honest. It tells them that I’m having difficulties, but also tells them I’m coping reasonably well. It comforts them–that even in the face of whopper problems like cancer and MS, a person can still find humor. It gives them a little encouragement, even, that when they’re facing their own problems, they will find a way to face them with grace. Which oddly comforts me, too. Perhaps it’s “fake it til you make it,” but I can feel better if I give myself permission to. But if I allow myself to be hamstrung by my thoughts, I suffer far more than if I’m honest about the problems I do have.
And that’s part of what Right Speech is about. It’s about not letting the suffering in your life continue to do violence to yourself or others with your words. I learned many years ago that a word can hurt more than a blow, and that self-condemnation is corrosive, but that’s the obvious stuff. Another obvious point is that Right Speech can be about creating kindness for yourself and others. But sometimes, the best kindness you can create is by circumscribing suffering and violence out of the conversation. It’s not about lying, or omitting. It’s about preventing violences of speech. Right Speech is about not suffering in the present by stewing in the suffering of the past.
Within days of finishing the radiation treatment in my eye, I quit saying, “I have cancer.” That thing in my eye had been bombarded with the radioactive equivalent of an eight-day regimen in seven days. The iodine literally lit up (in bright purple squiggles!) the blackness in my taped-shut eye. As far as I was concerned, the tumor (which I’d nicknamed “Bad Bob” for my daughter’s benefit) was dead dead dead. I added an emphatic “Die, Bad Bob, die!” to my daily mental roster of thoughts, just in case he had spawned a baby or two somewhere that the radiation hadn’t burned. If I’d continued to say, “I have cancer,” I’d be telling Bad Bob he was welcome to come back, to continue to take up a place in my present. And that, as Matthew Inman says, was “a nice big cup of nope” for me. Yes, I had suffered cancer. But I refused to suffer it more with my words.
So I tried to change to saying, “I had cancer.” But that led to too many difficult conversations with confused, well-meaning strangers if they asked when I’d finished monitoring. Because I wouldn’t be done with monitoring for years yet. And to say my experience with cancer was over when I was taking adjuvant doses of a chemotherapy drug and being aggressively moitored every three months with a battery of tests really didn’t do my mental and spiritual load any justice. So my answer became, “I’m a cancer patient”…which felt right. It did my ongoing experience justice without also giving cancer another foothold in me. It didn’t allow my lived experience to continue to do violence to me long after the cancer itself was dead.
After two years, I graduated from the clinical trial at Thomas Jefferson University in Philadelphia. I have a treasured picture of my treatment team, taken at my last visit. I love them all. I can’t describe how grateful I am to them. I think of them every day. But all the same, I’m so, so glad to be done. No more hotels, no more trains, no more being terrified that one flu could wreck months of carefully timed appointments (and my continued participation in the trial), no more sweating whether or not to take Valium before I got on the plane, no more bedbug protocol for every stitch of what I was wearing and carrying the second I got home…and most importantly, no more turnaround-and-do-it-again every three months–especially for my poor parents, who were driving 1,300 miles roundtrip for nearly every one of those quarterly visits to take care of my daughter while I was gone.
Yes, I’m still being monitored today, but at half the frequency, and I’m taking no medications for OM besides OTC eye drops. And since my monitoring won’t require much more travel preparation than making sure I have gas in the car, it feels like a total decadence. I still want to see my folks, but they don’t have to put the mileage on themselves to do it every stinking quarter. That schedule would exhaust me, and I’m almost thirty years younger than they are. We are all free to see each other on a schedule that works for us, and we are free to relax when we do.
But now what do I say? What’s the Right Speech here? “I’m a cancer patient” doesn’t quite ring true anymore. I’m no longer in a constant state of healing up my veins to get ready for the next assault. Were it not for MS, I could go months at a pop without even thinking about anything medical. That’s a far cry from other cancer patients in the world whose daily lives are filled with unthinkable suffering. Besides, having survived to the two year mark is, in the words of the TJU team, “a big deal.” So how do I honor that truth in the best way?
Am I ready to say, “I had cancer?”
To be honest, whether I feel ready or not, I’d better start saying it. Because I’m now adding a second monitoring schedule that’s exactly the same frequency as for the cancer I had in 2016. Except this new monitoring schedule is for an ongoing disease process that I can’t seem to get around semantically. I haven’t discovered a good way to say “I have MS” other than to say it. Because other than a handful of people who have gone through the horrific process known as a complete immune system reset, no one on Earth can say they had MS.
My monitoring for cancer will, at the five year mark, stop. But barring some massive step forward in medical science, my monitoring for MS will never stop. I have MS in a way that I only briefly had cancer.
Isn’t it odd, to have to learn how to speak correctly about my own life? But I’ll take it. It’s certainly better than allowing myself to “lose” to any of it. That draft called “Losing” never even made it past the “ideas on the page” stage because, even on a really bad day, I recognized how corrosive it was. The only thing that kept me from deleting it sooner was the art, which was lovely.
But I deleted it anyway. That kind of corrosion needs to be redacted from my mental vocabulary. Cancer patients are constantly bombarded with the idea of remaining “positive,” but I think that word needs to be corrected, too. I don’t need to be glowingly “positive” in order to understand that I shouldn’t perpetuate my suffering with my word choice, especially when truth will do the job better.
Cancer and MS have provided a painful and terrifying lesson in what Right Speech means for me. How I shape my words about my experience has direct influence on how that experience is lived, and how it pans out. I am, in a very real sense, speaking not only my truth, but my past, my present, and maybe even my future. I’ll have to be careful to make it the most honest, and best, I possibly can.
[From left to right in the photo: Dr. Takami Sato, me, Erin Sharpe-Mills, and Jessica Norcini. Thank you. For everything. –K 4/4/2019]