We have all heard the old joke about God and the Devil and the glittering jewel on the path. “What is that?” asks the Devil in admiration. “It is the Truth,” replies God. After a moment’s silence the Devil makes a helpful suggestion, “Let me organize it for you.”
— Brent Mitton
The Guru is Not Absent: The Case for Dharmatherapy
My friend, Robin, died recently. I drove across the country to visit her before she died, to remind her that her bravery made me brave. She seemed comforted by this thought, as much as you can be comforted when you know you’re going to die within a specific timeframe.
The chance of our stories becoming intertwined was unlikely. Robin had traveled the world. She’d been a guide in Alaska. She’d been a long-distance trucker. Me, I’m a wage slave who’s lived in the same town for so long I could drive the streets blind-folded. The circuitous route that led us to each other, that brought two people staring death in the face together, began in a writer’s workshop. We both liked to tell stories. She wrote about her travels — I wrote about relationships.
Fiction is what I usually write. This is not fiction.
I’ve told friends, “It’s like bad television.” You’d never see this played out on Grey’s Anatomy because it doesn’t ring true. And of course, there’s the superstition factor — usurping someone else’s story has got to screw up my own karma.
So instead, I’m going to write about the nature of reality and the writer’s obligation. I’ve been thinking about this a lot lately, ever since James Frey’s dust-up with Oprah Winfrey. Frey wrote a book, A Million Little Pieces, supposedly the true story of his descent into addiction. After Oprah chose it for her book club, the story turned out to have a number of embellishments. Okay, let’s call a spade a spade — he lied. He lied so badly that he even appropriated the tragedies of others for his own gain.
Outed by a website called The Smoking Gun, Frey came to stand for dishonesty at its most venal. His lie was at least as horrible as Herman Rosenblat’s scam, which was based on a story Oprah once declared “the single greatest love story in 22 years of doing this show.” Rosenblat wrote a memoir, Angel at the Fence, describing how his future wife passed apples through a fence to help him survive a concentration camp. Poor Oprah. I can understand her getting sucked in. What I don’t understand is why these writers wrote “memoir.” Why not write fiction?
Fiction is what I usually write. This is not fiction. When I write non-fiction, I make a strict distinction between what is true and what is invented. What I say here, in this essay, is truth — although admittedly filtered through my perceptions.
Ah, but there’s the rub. My husband, the main victim — er character — of many of my essays has said, “It’s not that you lie. You just remember big.”
Or I remember differently. My children accuse me of making up stories about them. I just tell the facts. It is a fact that my daughter swallowed a battery on a bet when she was fourteen years old. It is a fact that, around the same age, my son put his hand through the wall of our house because I wouldn’t buy him new clothes before school started. Yet, when I state these facts, they accuse me of lying. What do I have to do to establish veracity? Show the X-ray of the battery sitting in my daughter’s duodenum? Or show the fist-sized hole in the hallway of my house, strategically unrepaired? (I think it’s a good object lesson for my volatile youngest child to see that hole on a regular basis.)
The fact that they don’t want me to tell these stories gives me pause. And yet — and yet — when I attend family gatherings and try to be silent, someone always eggs me on, sometimes even the perpetrators. As in, “Oh, sure, Mom’s going to tell that story about me punching the wall again.” This is the stuff of folklore, these are family stories, campfire material, sagas I will pass down to my grandchildren who will someday say to their grandchildren, “And once, when your great-grandmother was fourteen, she swallowed a battery because her younger brother dared her…”
I consider these stories to be my stories. They do not belong to my children. My children have a completely different take on the same events, though the events happened exactly as I have described them. They belong to me because I was there, because I was the one who had to call Poison Control and explain that my yes-indeed-fourteen-year-old not fourteen-month-old daughter had swallowed a battery and to tell my husband that yes indeed our youngest child had put his hand through the wall! By virtue of my participation, these are my stories. I am the ultimate voyeur in my own life.
So, I will not write about Robin because I do not want to detract from the miraculous experience of her life. I don’t want to diminish the horror that befell her, and I don’t want to devalue her courage. However, I know that she will not be able to write about it, because she told me she wasn’t going to and because, by the time you read this, she will be dead. So there should be no conflict about me stealing her story. The only conflict is within me, that somehow, by telling her story, I am dishonoring her memory. And I do not want to dishonor the memory of someone so brave.
When she asked me to take her to the hospital, I knew something was seriously wrong….
When you write a piece of fiction, you must make it believable. Robin and I met in a writer’s workshop. Sometimes, we in writers’ workshops have to tell new writers that what they wrote is not believable. Sometimes their response is, “But this really happened.” And we say, “Ah, but nevertheless, it’s not believable.”
Some truths are just so strange they’re not believable. The fact that they happened has nothing to do with their believability.
So I will not write about how Robin called me one winter morning and said she’d been in a minor car accident the day before and how she had some numbness in her hands and feet. And how I offered to take her to the emergency room to be sure she didn’t have a pinched nerve. And how we went to the emergency room on the Sunday before Martin Luther King’s birthday and the ER doc decided she should have a CAT scan, just to be on the safe side. And how, sitting in the CT waiting room, I knew something was wrong because the CT tech came out and said, “You’re going to be here a while. Would you like a blanket?” And how I got goosebumps when he said that.
You see, I had recently been in that same room, waiting for a CT to pinpoint the rectal tumor that was threatening to kill me. Robin and I barely knew each other then — we had just met. As I progressed through my treatment, I talked to her about some of my experiences. Once I asked in amazement, “Do you know I have to take a shot every week that costs $1,500? How do people without insurance survive?”
“They don’t,” she answered. It turned out she was hiding a secret from me. She’d been having intestinal problems but couldn’t afford a colonoscopy. Only when her appendix burst and she was rushed to the hospital for emergency surgery did the doctors find the tumor in her colon that threatened her life. We were both relieved to get treatment and recover. We were both gun-shy about going to a doctor for any reason, for fear that something else would go wrong.
So when she asked me to take her to the hospital, I knew something was seriously wrong. Perhaps she’d damaged her spine in the wreck. So, I’m not going to write about sitting in that waiting room wrapped in a warmed white blanket while people bustled in and out, not making eye contact, and how I knew it was bad because this was the Sunday of a long weekend and special people had been called in who normally don’t work long holiday weekends. I’m going to write about how I knew something was wrong because I’d been in that same room a year and a half before and that same tech had pinpointed my own tumor like a butterfly stuck to a corkboard. So, see, this is my story, not Robin’s story. Me, wrapped in a warm white blanket, waiting for my friend to be released, thinking, whoa, déjà vu.
Lord Jesus Christ, by your patience in suffering you hallowed earthly pain and gave us the example of obedience to your Father’s will: Be near me in my time of weakness and pain; sustain me by your grace, that my strength and courage may not fail; heal me according to your will; and help me always to believe that what happens to me here is of little account if you hold me in eternal life, my Lord and my God. Amen.
— Book of Common Prayer (1979)
I am not going to write about the handsome, distraught young ER doc who came into our sterile ER room and gave us the incredible news. I am not going to describe his shocked face as he told Robin, “You have a huge brain tumor and I’m afraid there’s no cure.”
She actually made a joke. “Thank God, now I have an excuse for forgetting things — I thought I was getting Alzheimer’s,” and we actually laughed. I’m not going to describe how we ended up comforting him — got that? — we comforted him! as he tried to explain that the tumor was huge. I’m not going to mention how he looked when she told him she had five kids and needed to make plans.
A few weeks before, we’d celebrated her birthday at a nearby state park, Paynes Prairie. Robin loved the Prairie. She told me the history of this park right outside my own town, how it had once been the domain of Seminole Indians, how steamboats once crossed its grassy savannah. Our writers’ group celebrated her birthday on the prairie with readings of fiction and poetry. It was a lovely, Florida December day, breezy and sunny, and we toasted her sixty years on earth and wished her sixty more. And here it was, less than a month later, and her life was over.
And I’m certainly not going to talk about the cold, hot-shot young neurologist who told her that she had a glioblastoma, the most virulent form of brain tumor, and that without treatment she had less than a month to live. With surgery she might live for six weeks, but might be blind or paralyzed or not know she was Robin anymore. The neurologist asked her all kinds of pointed questions as if she were a fascinating specimen, with no hint of humanity in his face or voice. “Have you ever blacked out? Do you have trouble remembering things? Have you had a lot of headaches lately?” No, no, no, she’d never had any, none, zilch, zip, no fucking symptoms.
Instead, I’ll talk about how my friend Robin wanted a cigarette and how I held the bag dripping steroids into her system as we walked out the front door of the ER and how some nurse practically assaulted us, shouting, “You can’t take her outside!” And how much, how very much I wanted revenge on the entire medical profession, particularly the many people who’d missed my own tumor for so many years (see how we personalize the most ludicrous moments?) by screaming at this rude nurse, “Listen Bitch, she has an inoperable brain tumor. She can do whatever she wants.” And how I managed to restrain myself because Robin was so brave and I wanted to show I could be courageous, too, but by God in Heaven if she wanted a cigarette, that was her right.
And I’m not going to talk about staying with her all day until we got a hospital bed, and how I was there when she called her oldest friend, Beverly, in Texas and her oldest son in Ohio and asked him to tell the other kids what was going on. And how I didn’t want to leave but she needed things from her condo so I agreed to go and tell her roommate what was happening.
But I will talk about the guilt I felt leaving the hospital and how beautiful the sunset was that night and how I cried, thinking it was insensitive of me to even notice such a mundane thing as a sunset when Robin was dying. And how I couldn’t find the notebook she wanted and how I had to sleep before I went back to the hospital and how just being in the hospital, on the same floor where I’d spent the longest year of my life one week, caused me to feel panicked and breathless. When I returned to the hospital, I was absolutely manic. I wanted everyone to treat her well. So I turned into a one-woman comedy routine. For the sake of Robin, how endearing could I be? How many jokes could I tell? How fast could I talk? Could I throw salt over my shoulder?
Repression… the painful emotions arising out of the conflict, are actively or automatically thrust out of consciousness into the unconscious, in which, however, they still remain active, determining behavior and experience, for the most part indirectly and producing neurotic symptoms of various kinds, as well as determining dreams, both night and day, and underlying many types of deviations from normal behavior.
— James Drever
A Dictionary of Psychology (1952), via Columbia Univ.
I can talk about volunteering my home to Robin and her children so they could assemble and decide what their next step would be. What would you do if you had a month to live? Gather your family, go to the woods, walk deserted paths, explore the edges of lakes and swamps, watch the sun come up every day and never watch it set?
Here is where the curse sets in. If I wrote about the things I saw that week, would that trivialize them? Would I commandeer them against their will, hold them hostage, wring the truth from them and leave them dripping wet on the floor, abused and abandoned? When does someone else’s experience belong to you? Oprah, Oprah, tell me true?
Remember, my friend Robin is a writer. But she chose not to write about this. So does that mean the story is up for grabs?
The truth is so complicated. If I say my daughter swallowed a battery on a dare, that’s the truth. But the complication is that my daughter is the kind of kid who never, ever did anything wrong, and the fact that her wild brother bet her she wouldn’t do it means she practically had to do it. Just to show him that she could be a bad girl sometimes. Just to prove she was normal.
And my son, who put his fist through a wall because I wouldn’t buy him new clothes, didn’t tell me that an older girl had taken a sudden interest in him. This was the first time a girl had ever noticed him and he was flattered and frightened by the attention. He didn’t tell me. I didn’t get it. All I saw was that damn hole.
My truth is much more complicated than saying I went to the emergency room with a friend and she had an inoperable brain tumor. Because at the time, I was hiding a major secret of my own, fear that my cancer had returned. I had a mammogram in October, and was told I was fine. Then the doctor’s office called back and said, whoops, we found something, please come back. So, reluctantly, I returned for a follow-up visit, and the second mammogram showed a lump in my breast. I was then given a sonogram and that clearly showed the lump. So they referred me for an MRI. At this point, I opted out.
“You mustn’t avoid me, anymore. Whatever you decide to do, I’ll respect your decision, but you must not avoid me.”
Maybe if they hadn’t told me I was okay after the original mammogram, I wouldn’t have been so frustrated, so furious and so frightened that I went into avoidance behavior. After a year of chemo, radiation, surgery and more chemo, I couldn’t stand the thought of starting again. I began avoiding the omnipresent members of the medical profession. I refused to return phone calls from the mammogram doctor. I tore up certified letters sent to me.
Cancer had become the blight that blurred the landscape of my life, muddying the horizon as it came ever closer. Right before the mammogram, my youngest sister and my dear friend, Susan, had both been diagnosed with breast cancer. The two of them told me about their treatments, their fears, their intimations of mortality. Because I’d been through treatment for cancer, they felt they could confide in me. I couldn’t tell them my own mammogram had come back positive. I thought I’d rather die.
My primary physician, Dr. Ruben, got into the act. He started to call my house, personally. He left messages telling me I needed the MRI. I quit answering my phone at home and at work. I deleted his messages before my husband could hear them.
Miraculously the wolf closed his jaws and lay down at the feet of St. Francis. “Brother Wolf, you do much harm in these parts and you have done great evil…” said Francis. “All these people accuse you and curse you…But brother wolf, I would like to make peace between you and the people.”
So I will not write about Robin having an MRI. I will write about how I felt sitting in the MRI room pretending to read a magazine while Robin was inserted into a metal tube and pounded with noisy waves of magnetism and how I pretended I was fine and made small talk between the horrendous noises to let her know I was still there and how all I could think was, I can’t do that. I will not be able to take that test. And I will not write about standing in Robin’s hospital room listening to her make plans for her death with her children and how the reality of what I was hearing was like an assault and I thought, but I can’t just stay in limbo. So, I told her I’d been avoiding the doctors and that because she’d been so brave I would have the damn MRI. This made her feel better. She said, “If something good comes of this, then maybe it’s been worth it.”
I called my doctor, and I cried on the phone as I told him about listening to Robin plan her funeral. “If I have cancer again,” I said, “I’m not going to have any treatment. But I’ll have the MRI, so I can tell my family how long I have to live.”
This sweet man, who had taken me on as a patient the week I was diagnosed with cancer, the man who had referred me to the experts who saved my life, said, “You mustn’t avoid me, anymore. Whatever you decide to do, I’ll respect your decision, but you must not avoid me.” I agreed to this, although I didn’t believe him. Doctors are fundamentally incapable of letting you deny treatment. But I respect this man. I told him about my claustrophobia, so he prescribed large quantities of Valium to get me through the MRI.
Dr. Rubin had me pick up my records from the office where I’d had the mammograms and sonogram and bring them to the MRI facility. On the way, I pulled out the X-rays and stared at the tumor. The mass in my chest was so clear it looked like I’d swallowed a marble.
In the same room where Robin had been encased the week before, a young kid directed me to change into a gown and take off anything metal. He was very kind, though it must have been clear to him that I was high as a kite. He asked me if I’d like to listen to some music and I said, yes. “Do you like classical?” I made a face. “Rock?” he asked, and I nodded. “Do you want vintage rock and roll? Or something new?”
“Something new,” I said.
“How about Sting?”
I wrinkled my nose. “Sting isn’t new,” I groused.
He looked befuddled. “Coldplay?”
“Coldplay is good.”
Even with the music so loud my eardrums tingled, even so drugged I could hardly stand, being in that tube made me feel like I was in a coffin. Remembering Robin lying there so quietly the week before, I cried all the way through the test.
A week later I received another certified letter. “Your test results were normal.” You’d think the letter would have come as a great relief. Instead, I was furious that they had put me through this absolute hell, when it turned out nothing was wrong. And I was angry that I’d been made to act out a secret melodrama. The letter said, “Please make an appointment now for a new mammogram.” Yeah, that’ll happen.
Robin was thrilled by the news. She believed because her experience had forced me to take the MRI, she’d been responsible for saving my life. That really made me feel guilty. My life for hers? If I were writing about Robin I would say, is it fair to trade my life for hers? I don’t think so. How do you measure the value of a life?
May all beings everywhere plagued with sufferings of body and mind quickly be freed from their illnesses. May those frightened cease to be afraid, and may those bound be free. May the powerless find power, and may people think of befriending one another. May those who find themselves in trackless, fearful wildernesses – the children, the aged, the unprotected — be guarded by beneficent celestials, and may they swiftly attain Buddhahood.
— The Buddha
If I were writing about Robin, I would say, I drove from Florida to Texas to visit her. (Remember that claustrophobia? We claustrophobes don’t fly unless we have to.) She stayed with her friend Beverly until she died. When you are a cancer survivor, you spend a lot of time thinking about death and dying. It’s an unavoidable subject, even if you don’t expect to kick off within a month. During my visit, Robin and I spent many hours on the balcony of her friend’s home talking about our different beliefs. She thought she would die and everything would come to an end for her. She was on a journey that would soon be over. I believe she’s on a journey that will continue. I think this life is just a stop along the way. I told her I thought there was so much more to life than we can perceive, that there is a whole world of energy just waiting to absorb us, that we go on in a different state, sans corporeal substance. She gave me that look — the skeptical, slightly pitying look I frequently get from my non-believing friends and relatives.
I did not have the privilege of growing up in a religious household, though my parents were strong, righteous, moral people. My beliefs have been patched together through years of spiritual readings, teachings, and absorption. I believe it’s all true, all real, all there beyond our senses. I absorb and believe it all. I can’t explain any of it.
While I was visiting, I told her she should write to her children and tell them how she feels about them. “They already know,” she said.
And I thought, how arrogant you are to tell this dying woman what she should do, how she should feel. And yet I know if I had a month to live, I’d be writing letters to my family for every day of their lives, till someone ripped the pen from my cold, dead hands. “Darling daughter, congratulations on the birth of your first child.” “Dear Son, I want you to know how happy I am that you finally finished graduate school.” “My loving husband, on this, your wedding day, please remember me as the woman who wanted you to be happy after I’m gone.” “To my mother on her eightieth birthday, thank you for teaching me to be strong.” And I would tell the family stories. “Dear grand-daughter, when your mother was little, she once swallowed a battery on a bet.” “Dear grandson, let me tell you what your father once did for love of a girl.” Lord, through this method, I could go on and on. But that would be my story.
If I were writing about my friend Robin I would say, there are moments I can’t get out of my mind and I have to share them, because they are so painful, so recent, so real. Because this is not fiction, this is not me telling a story. This is reality. And reality demands an out. Fiction can waft away like a random thought — I need milk. But truth should out.
One morning just after Robin had been released from the hospital and her family was visiting at my house, I came out of my bedroom ready to go to work. I saw Robin sitting on the front porch, smoking a cigarette and watching the sunrise. Her thirty-year old son was on his knees in front of her, his head in her lap and she ruffled his hair like a child. I had to go back in my bedroom and bite my thumb till it bled so they wouldn’t hear me cry.
I’d planned my visit to Texas so I’d arrive the day Robin’s youngest son was leaving, so as not to interfere with his visit to his mother. Robin’s friend, Beverly, drove the son to the airport in Houston, while I stayed with Robin. Beverly gave me instructions on what to do if Robin had a seizure, what medications to give her, how to administer the suppositories if the oral medications didn’t work. I pretended to be calm and unconcerned about the fact that I might have to force medication down Robin’s seizing throat. Or worse. I pretended I could handle anything, even her death.
As Beverly and the youngest son drove away, Robin and I sat on the balcony of the house and waved to him. He waved back. She watched them drive out of sight, and then began to cry, the only time I had seen her cry since this whole ordeal began. “I’ll never see him again,” she said. “Yes, you will,” I answered. The look she gave me, so bitter, so frustrated, so irritated with my simple platitude, made me feel useless. I was convinced I was right just as she was convinced I was wrong. What brought us together? I believe in fate. I believe if I hadn’t met her, if I hadn’t got the MRI, if I hadn’t faced my fear, I wouldn’t be alive now. Or let’s just say, I wouldn’t be living. Yes, there is more than we see, more than we can know. Yes, I wanted to say, our essence goes on beyond this moment. Listen to me, believe me.
But what do I know? This is a woman who was looking death in the eye with more courage than anyone I’ve ever seen, and I’ve spent hours in chemo rooms with people getting up close and personal with the Grim Reaper. I have no proof of my beliefs, other than a certainty that this can’t be it, that God is in the details, in the pond behind Beverly’s house, in the sunset on a frosty January evening, in the red-rimmed eyes of a youngest child saying goodbye to his mother. For now.
So this is the truth. I cannot write about my friend Robin, who believes there is nothing beyond this life, because I don’t understand her. I can’t write about Robin because I want to scratch and claw for every scrap of time and fill every moment I’m alive so I never have to think and never have to feel and never have to deal with that bus bearing down on me. I can’t write about Robin because I’ll never be as brave as she is.
But if I am writing to her instead of about her, if I am addressing this truth to the Robin who may not be part of this earth anymore even as I’m putting down the words, all guilt fades. Maybe they’re all right — the Buddhists, the Muslims, the Christians, the Hindus, the physicists. Maybe there are many paths to “God” or perfection or infinity or parallel time. To Robin I say, I salute your courage and your spirit. Thank you for helping me to be brave. I’m still here, still thinking about you. Maybe that means you’re still here, too.
Defying the best expectations of the best doctors at two major medical centers, Robin Spaeth lived six times as long as she was told she would. She died peacefully in her sleep at the home of her dear friend in Texas where she could look out over the large back yard and imagine it was a prairie.