Seven years ago, during that week in every September when summer turns to autumn, my husband and I rented a car to drive the long distance from Oregon to Massachusetts. We drove because we craved the numbing constant of highway and sky through a windshield and because we needed the three thousand miles of slowly changing terrain to digest what we'd already been through that year and to prepare for what the next two months in Boston might bring. Anticipating the drive out, I felt a melancholy kind of excitement. We'd been stuck in hospitals and at home for the first part of the year and the prospect of being in motion, to be driving, to be in control, felt like playing hooky from the heaviness of our life.
Earlier that year my thirty-two-year-old husband undergone two brain surgeries in an attempt to remove a tumor the size of a golf ball behind his left eye, but the neurosurgeon couldn't get it all out. All summer we'd waited to hear—as one doctor waited to hear from another doctor who was out of the country but upon his return would look at the images of the tumor bits that remained in Brian's head—if he would be a good candidate for proton beam therapy at Massachusetts General Hospital. In late August the answer came back: yes.
Our rented minivan was packed with anything we might need and lots of things we didn't but refused to leave behind: our dog and clothes and shoes and slippers and too many books and my journal and two plants and Christmas lights and a small Buddha and three crystals and the handmade quilt we always had on our bed and a small amount of very good marijuana because it was the only medicine that took care of my husband's unbearable headaches. Leaving Portland, Brian drove north on Grand Avenue headed for I-84. My window was down, the smell of the season changing sharp in the early morning air. I snapped a Polaroid. When the image developed it was nothing special, a crooked still life of road and cars near the freeway entrance ramp. I was disappointed. The photograph didn't capture what I'd hoped it would. Each day of the eight-day trip, as we woke up farther and farther east, I'd try again. The loud snap and hiss of the Polaroid making pictures but what I wanted to capture could not be caught.
The next day, heading out of Missoula just past sunrise, the highway was quiet. The road warming up from the early dark. Brian was driving. Our sweet dog laid his head between the seats. Smell of warm coffee. Quiet music through the speakers. My feet still cold in my shoes. On the side of the road, fog hugged a forest of pines. I had the feeling that as long as we were together like this, in motion, we were safe.
In Boston, our days fell into a rhythm: a morning walk around the esplanade with the dog, no matter the temperature; a search for something edible from the hotel's breakfast buffet; read a little; write; maybe a movie or a nap in the afternoon; and always, every weekday the trip to the hospital for Brian's treatment, sometimes early in the morning or as late as seven at night—we'd walk to the T and ride one stop across the Charles River to MGH; sit in the waiting room together; then I'd sit in the waiting room alone as my husband laid inside the belly of the mammoth two-story cyclotron for his daily laser-precise beam of proton radiation aimed at the remaining bits of tumor in his head; then we'd walk the dog; drink a beer; dinner; TV; sleep.
On our hotel room wall, we'd posted a plain paper calendar, and at the end of each day Brian would scrawl a giant X in black marker through the day's perfect square, slowly creeping toward the final day of treatment when we imagined that at last the horrible year would be finished and we could get back to our lives. But as that clichéd miraculous moment of the final X on the paper calendar drew nearer, something unexpected was happening.
A few months ago, my husband and I, our emotions rose and fell together; we were like one body breathing. Now we were more like the mathematical symbol for lesser than—same point of origin but with lines at opposing angles. My husband moving up and up and up as the end grew near and he allowed himself to entertain the idea that he was going to live. Me, I slipped down and down and down. How could I tell him that I didn't want it all to end because the end meant a standing still? This gentle breaking apart wasn't the result of heated aggression or divisive choices or acrimony of any kind. It was just a slow pulling to either side, like a river that parts around a small island. No drama. No fanfare. Just together, and then apart.
We'd known about the weekly brain tumor support group meetings since we'd arrived in September. We'd avoided going because the last thing we wanted to do was to spend more time at the hospital, but we were becoming so fractured it seemed wise to spend time in a room full of other people who knew the difference between transsphenoidal and craniotomy, who also had pinprick head tattoos like stars to navigate by.
So, on an unseasonably warm late October day we rode the hospital's elevator to the tenth floor. We braced ourselves outside the closed door, preparing for the emotional intensity I knew we'd been avoiding. That was, after all, the real reason we'd stayed away: we could barely keep ourselves above water with what we'd been through. If we added the weight of other people's stories, it might sink us.
We opened the door. Two women sat at a conference table stacked with pizza boxes, some open, some closed. They were laughing. One had a bite of pizza in her mouth. We'd obviously walked into the wrong room.
“Have some pizza,” one of them said.
This was a mistake.
“Take a seat,” the other woman said.
We were the sole patient and caregiver there.
A stack of paper plates on the table. Paper towels for napkins. As impossible as it seemed, this was worse than we'd imagined.
“There's a veggie one, plain cheese, a pepperoni, and what's this one? Oh yeah, another veggie. Help yourselves.”
The women introduced themselves as social workers, and asked the questions every other medical professional had been asking my husband at each initial meeting: what kind of tumor, what symptoms, what kind of surgery, what kind of side effects? Brian answered their questions, and I ate my slice of veggie pizza, grease on my fingers, grease on the paper plate.
“And you,” one of them said. “How are you doing?”
She was speaking to me.
How am I doing? I'm just the note-taker, the appointment-maker, the driver, the accountant, the wife. I'm fine, I told them, fine, all things considered, and see how really lucky we've been and Brian is doing so well and we're going home soon. I looked at the open pizza boxes and thought about eating another slice.
“You know about the crash, right?” she said to me. “Has anyone told you about the crash?”
It didn't sound good.
“You're doing fine now,” she said. “You're holding everything together because you have to.” She took another bite of pizza. “Help yourselves, you two,” she said. “But when you go home, he won't need you to hold everything together anymore, and you're going to crash. It happens to everyone.” She chewed her pizza. “In fact when you leave today you should take one of these pizzas with you. We can't eat all this.”
As the end was in sight, we started receiving encouraging emails and letters from friends and family.
You're free to go back to your old lives now, people would say. That's all over now, people would say. What a relief, people would say.
How could we explain the incredible vacancy that lay just beyond what it would mean to arrive home? How was it supposed to work? Would we simply unpack and get back to the world? What was impossible to imagine and what I wasn't brave enough to admit out loud was that, even with Brian's likely healthy outcome, it felt like there was nothing to go back to. I could feel the loud emptiness coming. We were headed straight for it.
On the last day of Brian's treatment he wrote the word done eighty-eight times in his journal. That's it. That's the whole entry. I wrote, I do not feel glad it is over. I do not want to stay here and I do not want to arrive home. I want to disappear.
We spent the week before Thanksgiving driving the three thousand miles back to Portland, a quiet echo of the trip we made two months before. The days were short and cold. We were trying to beat winter home. We were headed back to Oregon with great news—the proton beam radiation had barbequed the remaining tumor behind his left eye, and he was very likely to never have a recurrence—but we were subdued. Hollowed out.
On our last day of driving, Boise to Portland, we hit hundreds of miles of treacherous driving—falling snow, black ice, freezing fog. Brian was sleeping in the passenger seat, exhausted from travelling and radiation. My sweaty hands clamped around the steering wheel, my neck stiff and tense, heart kicking at my lungs. I had the thought that if the car slipped off the road and we perished because of bad weather, it would be both a terrible tragedy and a huge relief.
When we pulled into Portland, it was raining and dark. Off the freeway, down Eleventh Avenue and waiting at the stoplight to cross Powell. All the lights reflected in streaks on the wet pavement. One last picture. The snap and hiss. I set the photo onto the dashboard: it was too dark to see what might be developing. We're onto Fourteenth and into our driveway. I cannot remember if there were lights on in the house. We unlocked the front door and walked inside. The house didn't smell like us anymore. Things were not where we left them. Furniture and rugs had been moved. Three months of bills, magazines, letters in a messy pile. The basement had flooded while we were gone—my office and meditation room were damp and moldy. The den smelled like cat urine. I remember thinking, very clearly, I do not want to see anyone ever again.
A couple of mornings after we'd arrived home, Brian and I both were standing in the kitchen. I was looking out the window over the sink: the trees had no leaves, and the sky was dark and gray. Brian stood a few steps away, in front of the open refrigerator door. I turned toward him and said this sentence.
I said, “I understand now why people get divorced after something like this happens.”
There was a long silence in the space between us.
What I meant was I wanted to move far away and start over where nobody knew me and I could be anyone. Where I was not a supportive wife. I was not lucky. I was not wise.
What I meant was, after everything we've been through I love you so much I'm willing to confess that I don't understand how we're supposed to be anymore, that I am afraid we will ever feel normal again, that I feel horribly, unreachably alone, and I am betting you do, too.
He did not close the refrigerator door. He did not turn to hold me. He simply said, “Yes.” His eyes held my eyes and he did not look away. He said, “I do, too.”
It was apparent that we were at the end of something and that this necessitated the beginning of something else. But what that next thing was I could not comprehend. Because if the life we had known and loved so much was gone, and what we had been through was so hard, well then what on earth awaited us?
One night I was on the phone with my dad. At the end of the conversation, his voice heavy with sadness and wonder, he said, “It's a whole new life for you and Brian now.” At the time, in my weariness, I understood him to mean, Hurry up, now. It's time to get back to your normal life. Which actually, I see now, wasn't what he meant at all. In retrospect, what I think he meant was, Do over, Honey. Mulligan. Get back out there. Get back to life. Not the same life as before, like many other well-meaning people expected. Instead, I think he was urging us forward, toward the life that was, after everything, in front of us now.
2 comments have been posted.
Yes, yes, yes. Eighty-eight times. Those Polaroids were so visible, too. Thank YOU.
Mary Ann Barton | January 2016 | Boston, MA, USA
beautifully rendered picture of a family in crisis - medically and emotionally - without a map to guide them through; you can't help but become involved in their lives and their future, a mark of the kind of writing that keeps you going until you finish the book, and think about when it's done; it is a realistic portrait of illness and recovery and the struggles we share and for which, in the doctor's bag, there is no answer
Evelyn Sharenov | November 2015 | Portland, OR