Need some? I do, as may be obvious by my extended absence.
Almost exactly a year ago, I profiled Joe Neyer, a young (by my standards) man who chose to stop traditional treatment last year for his brain tumor. His wisdom and eloquence are disarming. Today he posted another gem on facebook and gave me permission to share saying, “the words come and go with the wind, they are not mine, share all you like…”
The world needs this voice. I’m so grateful for access to all this peace and profundity. I hope you enjoy it too.
I sit now in an empty garage, with only my thoughts as company…time like this is essential for my well being, to be alone with the mirror of thought and allowing space to be seen for what it is…
Death is such a good friend, the snake biting its tail, unraveling the complexity we surround ourselves with. Just as a snake sheds its skin so we must as well if we wish to remain flexible and able to adapt to the ongoing changes life delivers to our doorsteps…
What a fascinating thing it is, the utter simplicity that underlies all the complexity, drama, surface details we surround it with. To feel oneself as that simplicity rather than caught in the extremities of thought is to know peace, not theoretically but in a visceral way, filling ones days with what is actually needed rather than what is sought, be it peace or heaven or a fat pocketbook. You see, that is hell, to seek to be something different than what we actually are, the conflict will always manifest in some fashion…heaven is the absence of this search that is based on comparison, a ‘value’ taught to us by the systems we use, by the churches we go to, by the media who tell us what is of worth and what is to be ignored.
Having, or rather taking, space for ourselves is an act of love that benefits the world. Vision allows more to be seen than what shows on the surface. If you are on the tail of a wide truck you lose vision and subsequently power. Give yourself some time today, and every day, to see what puts us in hell and that the kingdom of heaven is indeed within, in the absence of the hell we put ourselves through.
Oh, lol, i meant to write this letter to talk about Hospice, as we have made first contacts with the organization. I am slowing down more and more physically, and while i think there is a ways to go, one never really knows that, whether one has glioblastoma or no condition at all. For me the writing is much of the medicine i continue to take. I have an opportunity to be alone and let the words pour through me the same way the story of the trees once told me the story of the piece it would become. Thanks for letting me share it with you all…knock on any door, the buddha said, and the one opening it will suffer. This is the fact that is not to be escaped or we miss the simple joy of living itself.
When my daughter was little, she read like crazy. She chewed through the entire Harry Potter series in second grade and like a lot of kids, loved the magical, imaginative, world of possibilities it created. Around that same time, controversy surrounding the movie version of another young adult fantasy series, The Golden Compass swirled, forwarding the idea that this movie was an attempt to peel kids away from Christianity. I wasn’t surprised when my daughter came home from her Catholic school repeating this. I told her then and have repeated many times, “Never be afraid of someone else’s ideas.”
Now a teenager, she told me recently about a movie they discussed at her church youth group, God’s Not Dead. The plot of the movie, as she relayed to me, involves a Christian student being told by his college professor that God is dead, and said student proves him wrong.Alarms in my head went off.
I explained to my daughter that this movie sounded like a bunch of right-wing propaganda, reinforcing the popular but crazy notion that universities are packed with evangelical atheists who are out to subvert your child much like the devil tried to subvert Jesus in the desert. That set me off down the path of the rant about the anti-intellectual movement in certain factions of the right-wing. The real question here, I told her, is why it is that the leaders of this movement are so scared of their children getting an education.
My daughter, a solid rule follower, asked me if I was saying she wasn’t allowed to see it. Fully immersed in my own momentary righteousness I said, no, she wasn’t allowed to see it. Remembering my mantra about ideas, I backed off it and said I’d have to think about it more. It turns out that she hadn’t made any plans, she was just wondering what I would say. I hasn’t come up again.
Was I being a hypocrite? I don’t know. Maybe. Probably. I think there is a strong argument to be made that this movie is more propaganda than an invitation to engage ideas. Still, I really do want her to make up her own mind. It’s just that in her world, there is not a lot of counterpoint.
This is coming up today because of this excellent Facebook post from Robert Reich.
Several of you tell me I’m wasting my time preaching to the converted; I should be aiming my writings and videos at conservative audiences. The problem is they’re very hard to reach. They live in their own hermetically-sealed bubbles (Justice Anton Scalia recently told a reporter he got his news only from the Washington Times and Wall Street Journal) just as many progressives live in their own bubbles. Yet the only way we’re going to move forward as a nation is by talking and arguing with people who disagree with us.
Which is also why I find so troubling the recent “disinviting” of several high-profile commencement speakers in response to student and faculty protests – Ayaan Hirsa Ali, deemed too controversial for Brandeis University; former Secretary of State Condoleeza Rice, objected to at Rutgers because of policies she advocated in the Bush Administration; Christine Lagarde, managing director of the International Monetary Fund, turned back by Smith College because of certain IMF policies; and Robert Birgeneau, former Chancellor here at Berkeley, disinvited by Haverford College because of how he handled student demonstrations in 2012.
Progressives who disagree with the views or actions of people invited to their campus can peacefully protest. But “disinviting” them from even presenting their views or defending their actions contributes to the escalating unwillingness of Americans to listen to the other side – a deeply dangerous trend.
Now, there’s an argument to be made about whether a commencement address is a free exchange of ideas, but his larger point is well-taken. It has become too easy in our hyper-connected world to seek out information that only confirms our own ideas, without ever considering anything that challenges us.
That, as Reich says, is deeply dangerous.
It’s that time of year again — commencement speeches and recognition of milestones. Endings and promises of bright tomorrows. A whole lot of “kids these days…” (more on that one later)
I don’t know how I missed this – David Foster Wallace speaking at Kenyon’s 2005 Commencement. It was played today on the Bob Edwards Show and I was stunned. I sat outside my office listening to the last word. It’s a little long, just over 20 minutes, but worth every second. Here is the text if you’d rather read than watch. It’s hard to pull out one teaser-quote from the dense and interwoven speech, but here’s what I chose:
The really important kind of freedom involves attention, and awareness, and discipline, and effort, and being able truly to care about other people and to sacrifice for them, over and over, in myriad petty little unsexy ways, every day. That is real freedom. The alternative is unconsciousness, the default-setting, the “rat race” — the constant gnawing sense of having had and lost some infinite thing.
I woke up the other morning at 3:30, my mind racing with mundane but persistent thoughts. Something I’d done, something I’d forgotten to do, nothing even remotely interesting. Like most well-adjusted folks, my husband was asleep, so once I realized I wasn’t going to drift back to blissful unconsciousness, I sneaked downstairs to watch television. When my occasional insomnia flares up, mindless programming gives my beleaguered brain an excuse to take a break and lulls me back to sleep. Unfortunately, my terrorist cat had other ideas. He didn’t approve of the break in routine, so he took to howling, banging on doors; waking up my daughter. Outrage stoked the fire, the hamster on the brain wheel was going at a breakneck page. I HAD A BUSY DAY PLANNED, DAMMIT. It was going to be a long one, including running a meeting in the evening for a school organization I chair.
When my 6 AM alarm went off, I was supremely grumpy and the cat was still howling. School day mornings unfold predictably, no matter how well-rested I am. Make coffee (extra cup), make lunches, get ready for work, get the kids ready for school. I had dark circles, puffy eyes, and a bad attitude that included murderous thoughts toward a certain well-loved feline.
An efficient morning machine, we set off at 7:30. Two uniformed, brushed, lunched, tableted, backpacked, and otherwise prepared kids and I walked down one house to the corner school bus stop. On schedule, the kids boarded the bus while a few commuters waited until the red lights stopped flashing. I waived at two kids a bit too old and distracted and self-conscious to wave back then turned to walk home.
A woman in a red car rolled down her passenger-side window.
“Watching you put your kids on the bus everyday is so touching to me. My kids are grown and I miss doing that so much.”
Sort of stunned I replied, “Well, I’m going to keep doing it as long as they let me.”
She drove on. I walked home disarmed, a little less self-pitying and a whole lot less angry.
This is what they call a trigger, a moment when five years ago, almost six now, pops back up like it’s today. The proverbial phone call that brings you to your knees.
Malignant cells in your lymph node.
I dropped everything in my life that was inessential and made a few modest goals. As I was in the whirlwind of testing and treatment, they were starting third and first grades. How do I let them bask in their well-deserved glow instead of allowing this stupid cancer become a metaphorical cancer on their childhood? I tried to keep their lives as normal as possible and one reliable routine was the morning school bus ritual. I vowed to walk them to the school bus every day.
It wasn’t all unicorns and rainbows. My then eight-year-old grew embarrassed of my bald head and asked me to wear my wig to the bus stop. I tried to be understanding, but did blow up once about how I didn’t like baldness much either. I don’t think she remembers that specifically, but recently she did tell me she was sorry for not being more supportive of me during those year.
Ridiculous, I told her. Her very presence was all the motivation I needed to keep on keeping on, and what better support could there be than that?
I’m happy to report I met my goal every day except one — the morning after my mastectomy I was in the hospital and my mother-in-law took over morning bus duty. That was a Wednesday morning. I was back in action Thursday.
I know that goal was just as much about me as it was about them — clinging to something normal and dependable in an attempt regain my footing, realizing what I always took for granted.
I also know my kids don’t need me to walk them to the bus anymore. They are 14 and 12 now, and I am aware that having your mom at the bus stop isn’t the slightest bit cool. But we laugh and talk and watch the neighborhood animals and the geese and herons flying overhead and the changing trees and enjoy the fresh air. We talk about the weather and review our schedule for the day.
And like I told the kind miracle worker in the red car, they haven’t yet asked me to stop.
~ Lynn Ungar
They thought they were safe
that spring night; when they daubed
the doorways with sacrificial blood.
To be sure, the angel of death
passed them over, but for what?
Forty years in the desert
without a home, without a bed,
following new laws to an unknown land.
Easier to have died in Egypt
or stayed there a slave, pretending
there was safety in the old familiar.
But the promise, from those first
naked days outside the garden,
is that there is no safety,
only the terrible blessing
of the journey. You were born
through a doorway marked in blood.
We are, all of us, passed over,
brushed in the night by terrible wings.
Ask that fierce presence,
whose imagination you hold.
God did not promise that we shall live,
but that we might, at last, glimpse the stars,
brilliant in the desert sky.
My oldest turns 14 today. (Insert all clichés about time’s swift pace here)
Please permit me this rare moment of sentimentality…
It’s my 47th birthday. For the past six years, I have spent a least a portion of milestone days wondering if each one was the last. I’ve measured time differently, divided my life into “before cancer” and “after cancer.”
Before became after two months past my 41st birthday.
Yesterday I was writing in my journal about this, racking my brain for some new insight, some lush expression of gratitude, some sagacious epistle, at least an illuminated utterance.
I’ve got nothing.
The truth is, what is forefront on my mind is the daily mundanity – enjoying the ride of my daughter’s last year in her Catholic grade school, puzzling over my son’s careening toward puberty. I really want a paver patio. This weekend we have a basketball tournament, volleyball practice, that long Palm Sunday Mass, and a track meet. I’m anxious to hang some Boston ferns and plant some annuals. And what will we have for dinner tonight? Oh yes, the monkey mind has been busy.
It’s not that cancer has disappeared from my awareness. Obviously I can’t look in the mirror without remembering. Sometimes I get waylaid by a PTSD flashback – the taste in my mouth from a saline push or the uneasy simmering nausea during chemotherapy. But to bring that into the present moment at will requires some serious conjuring.
It’s just not my yardstick this year.
Falling in to my lap yesterday afternoon was a piece by, of all people, the conservative columnist David Brooks in an New York Times’ Op-Ed, What Suffering Does. I think the Buddhists have the definitive answer on suffering when they say that pain is inevitable but suffering is optional. I believe that we create our own suffering by clinging to things that can’t be grasped. When I started to read this piece, I got a little hung up in the language, so if you do too, stick with it. His larger points are thought-provoking and sometimes profound.
Brooks makes it clear upfront that suffering isn’t inevitably redemptive, but what you do in the face of difficulty might be. “The right response to this sort of pain is not pleasure. It’s holiness. I don’t even mean that in a purely religious sense. It means seeing life as a moral drama, placing the hard experiences in a moral context and trying to redeem something bad by turning it into something sacred.”
“Recovering from suffering is not like recovering from a disease. Many people don’t come out healed; they come out different.”
Trying to create something sacred has been a driving force behind my work in the “after.” I suspect Brooks is talking about the showy creations – foundations and the like. At this point, we need another breast cancer foundation like we all need new holes in our heads. I certainly don’t regret the years I spent agitating, but the main lesson I learned was how limiting, and limited, it is.
I have been thinking for weeks now about the intersection of the sacred and the ordinary. I am grateful beyond words for my children, who constantly nudge me out of the past, out of the dark ruts of rage and victimhood; whose very existence proves that nature of the universe is change. I try to create a safe and fertile space for their blossoming and along the way feed and fortify my own spirit. I am trying to create a life that honors the light in them, in me, in everyone around me.
What could be more sacred than that?
No, that’s not how long it has been since I’ve posted, although it kind of feels like it.
That’s how long I made it without an SSRI. I definitely did it my way this time, stopping cold on November 3rd and riding the waves of “discontinuation syndrome.” (you can’t call it withdrawal because technically it isn’t addictive). I made it through the long, cold, snowy winter. Leave it to me to be backwards. When spring signs appeared, so did my ugly symptoms. No sleep, extreme agitation, aches and pains, lack of ability to accomplish anything, the constant feeling of doom, knowing that my life was about to fall off a cliff. As my wise and hilarious friend Cami once put it — I have two moods: calm and cat-on-the-ceiling.
I’ll repeat myself — I handle the big stuff the same way regardless. It’s the little daily stuff that grinds me down.
I think I know why spring triggers it, based on my very limited understanding of yogic philosophy.
There are three states (gunas) in the nature of everything – tamas, sattva, and rajas.
Tamas guna is inertia or indifference and in seasons we would likely associate that with winter.
Rajas guna is a time of action, excitement, and growth; what we would likely associate with spring.
Sattva guna is what we try to cultivate in yoga; the middle path or peace.
Everything exists somewhere on a spectrum of tamas-sattva-rajas and as humans, we tend to shift back and forth over time, sometimes short amounts of time.
My habituated tendency is toward ragas guna – a fiery drive to do, do do. I think this winter, one especially long and cold, balanced my rajas, pulling me more toward the center. Once the rajas energy took over, the earth came alive and my fire was stoked. With the world around me buzzing with growth and life, I became increasingly agitated and unsettled. Then I stopped sleeping. From experience, I know it’s all downhill from there. Fortunately, I stayed self-aware enough to know it was time to make a change.
I decided it was better for me and for everyone around me that I go back to the meds. I am about 9,000% calmer. An unanticipated benefit – my right knee has been bothering me since December. I even quit my boxing classes because of it. Back on the meds and like magic, the pain is close to nothing now. My sleeping is better, although not perfect yet.
As always, there is guilt and feelings of failure, particularly because of the stigma of the “crazy meds.” But you wouldn’t often find a person taking, say, cholesterol medication, decide to stop taking it just to see what happens, right? Just because she thinks she’s tough enough to manage without? Someday we’ll learn to treat them as equals, even if we can measure them both in the same objective way.
Ah well, lesson learned. Probably not, actually, as I seem to keep repeating this one.
(yes, it been awhile. exile is never easy)
In the Beginning
~ David Whyte
Sometimes simplicity rises
like a blossom of fire
from the white silk of your own skin.
You were there in the beginning
you heard the story, you heard the merciless
and tender words telling you where you had to go.
Exile is never easy and the journey
itself leaves a bitter taste. But then,
when you heard that voice, you had to go.
You couldn’t sit by the fire, you couldn’t live
so close to the live flame of that compassion
you had to go out in the world and make it your own
so you could come back with
that flame in your voice, saying listen…
this warmth, this unbearable light, this fearful love…
It is all here, it is all here.
In 2002, Chris learned that the breast cancer that was supposed to be gone had returned and metastasized. But time was moving along and although Chris was learning to accept her dismal prognosis, she seemed to be outpacing those survival statistics. In April 2007, Chris’s life turned upside down again when she was awarded custody of her 15 month old grandson and her 10 week old severely disabled grandson.
Accepting her seemingly inevitable fate was no longer an option on the table; her grandsons needed her. She has spent every day of her life since then caring for and raising them. Her youngest grandson has seven therapists and has made remarkable progress, but the days are exhausting. Because of her own illness, Chris is unable to work and has to rely on government assistance to care for herself and her family.
Her cancer is stable right now and Chris is grateful even though her life is far from easy. She currently gets injections of Faslodex and Lupron every four weeks. She won’t change until these drugs stop working. She could move on to stronger drugs, but as she says, “In my mind, I need drugs in my arsenal for the future. I don’t want to use the big guns just yet since what we have works. I NEED another decade or two to get these boys raised.”
Chris describes her treatments.
“Every 4 weeks I go for treatment. I get 2 honking big needles stuck in my hips that contain meds the consistency of sludge. After 10 years of this, I have so much scar tissue back there. We are now having a hard time finding places to stick me. Good thing I have a very large back side! Same with my arm for drawing blood –my veins are getting like gristle and only my ‘vampire’ of 10 years can do me without digging. She was on vacation this month and her replacement (and 2 of her ‘friends’) stuck me 11 times before we got it. Good thing I’m laid back huh?”
And the time between treatments.
“After treatment, for the next 10-14 days, pain spirals up until I’m in a serious amount of pain. If it’s raining or cold, I’m almost incapacitated, but I CAN’T be. I have 2 little boys, so I do the best I can. Then it winds back down. About 3 days before my next treatment, I feel almost good again, and I start the cycle again.
I have neuropathy from when I did Taxol in 94. We believe the Lupron aggravates it and the bone pain. The many years of treatment have rotted out my teeth (and that’s not covered by Medicaid or Medicare). I feel like a 67-year-old woman instead of a 47-year-old one.” [edited to add: this was in 2012. Chris passed her 11th anniversary of being diagnosed with Stage IV breast cancer last October and is closing on the big 5-0]
So why do I want you to know this story?
First of all, she’s my friend and I have great respect for what she’s done; for what she does. Is she a saint? (stop laughing, Chris and friends of Chris) Of course not. Some of the stories that didn’t make it in here would make your toes curl. And she told me the only way she makes it now is on five-hour energy drinks, which I haven’t seen listed in any cancer-busting-diet book. But she is dedicated to her family, she doesn’t want anyone to feel sorry for her, and she is plowing forward with life. Did I mention tough? She’s the toughest broad I know. She often jokes that after the apocalypse, only she, Keith Richards, and cockroaches will remain.
On a less personal level, I have so many questions.
About cancer: Why is she still alive?
About treatment: Is this the best we can do?
About the role of human will: Is her survival purely luck and biology, or does that incredibly stubborn nature come in to play?
About society: How can we improve our social safety net?
About politics: Are we really going cut her off, dismiss her as one of members of the so-called culture of dependency? If you knew Chris, you wouldn’t call her that. And if we knew more stories like this, would we be so quick to dismiss and judge?
About the nature of the universe: Why has this one woman been forced to endure so much?
I guess I just think you should know that she exists. More people like her probably do too — struggling on the margins of society, completely disconnected from the popular bubbly girly pink image of this marketed version breast cancer. A real human, achieving sometimes super-human things under trying conditions in sometimes unorthodox ways.
If you feel so compelled, please consider dedicating the next few weeks to helping Chris win this van to transport her grandson. Read all about it here.
HUGE THANK YOU TO CHRIS FOR SHARING HER STORY!!!