!!!!!*****WORKING DRAFT*****!!!!!
Dear Mike – I began to write – I think a lot about the old days now — those were really good days for me. You helped me so many times when I was down or confused; I could always count on you for the right advice. I never had any other friends who cared about me the way you did. I hope sharing our story will show my thanks for that…
And so I began to probe my past, tentatively at first, easing in, trying to re-capture the sights, the sounds, the feelings of the times, the people, the places, that formed me. It came easily but slowly.
Whenever Petyr saw me writing out in longhand and he asked, “How’s it going?” I invariably replied with some variation on, “I worry if I spend too much time dwelling in the past, the future disappears.” Still, a little here, a little there, and within a year, I had a stack of paper two inches high, ready to be typed up, re-read, and put away in a box, that mental box safe from tears, regrets, anger and sadness.
Sometime that summer, Petyr took us out to dinner, ordered a bottle of Champagne, and insisted I take a sip. As I lifted my flute, I asked, “What are we celebrating?”
He produced a large, white envelope, extracted a stapled sheaf of thick paper, numbers along the side of each. “My divorce. The final act. Your pen, please?” I handed over my Rapidograph, and he began to initial each page, then finished on the final line with a grand flourish. Returning the pen, he rifled the stack, placed it back in the envelope, and announced, “Now, we’re free. Are you ready?”
“For what?”
“Do you think,” he began. “Do we think, it’s time we shared more? Found a place to live together? Over in Cambridge, they must think the recession’s over. They’re starting to build a new complex, condominiums. We can get in on the ground floor, so to speak, put our money down, reserve the best view, right across the river.” He reached over, took my hand, and smiled expectantly.
I nodded. “Three bedrooms, though.”
“Three bedrooms,” he said. “Why?”
“We each need an office.” It seemed obvious to me.
“What about the boys?”
“Well, you can put a bunk bed in yours, right?”
We went on like that, planning every detail. What furniture to buy, which kitchenware to keep, rugs, towels, the entire panoply of life together, the stability I envisioned in our future.
We moved in just after New Year’s, 1983. Our first dinner guests were Steph and her fiancé. The small talk drifted for a while, then Steph asked, “Do you feel safe yet, Sarah? It’s been, what, over a year. You’ve been off the monthly treatments since, when, September? You’ve got a glow I haven’t seen…”
Petyr took my hand, announcing, “She finally finished that project she’s been working on, writing a little book about her college days.”
Steph, surprised, asked, “A book? Why?”
“I tell Petyr, ‘It’s cheaper than therapy’!”
“But aren’t you in analysis already, what…?”
“I’m finding that telling the story to myself, first, late at night, to get the details right – then I can share it on the couch.”
Petyr laughed. “She/Dr. So-and-so doesn’t really have a couch, does she?”
I shook my head with a sad smile. He still had trouble with my sense of humor. “Euphemism, honey.”
“Hmm,” Stephanie speculated. “Sounds like you’re letting go of the past, the long-ago past.”
“Yeah, the long-ago helps me deal with the near-at-hand. When I think about dying…”
Steph shook her head emphatically. “You are not dying, you are most emphatically living, Sarah.”
“No,” I countered, “no, when I think about dying, I don’t think about me” – here, I swept my left hand down my body, my right hand pointing to my head – “I don’t think about all this being gone. It’s my story, who I was, who was with me, who loved me, who I loved, where it all was going, all the beauty that I saw – that’s what worries me, that will disappear.”
“But we’d still remember you, your story. As long as you’re in our hearts, you’ll still be here,” Petyr asserted.
I touched his hand. “Memories fade. Worse, they get transformed, gauzed over into dreamy highlights. And then one day you forget, move on, or you’re gone, too, and what happens to me? I have to share the beauty as I saw it, capture it in amber, for myself, then let it go.”
“Can I see it?” Steph wondered.
I laughed. “You’ve seen my handwriting. You’ll never be able to read it, not without a microscope. No, wait until I type it up, then, OK?”
********
xv
For my birthday, my thirty-fourth birthday, Petyr brought home a giant present. Ripping off the ribbon and sparkly paper revealed three white cardboard boxes with purple cursive lettering, ‘Lisa”. The image of a keyboard on one, a strange object with a long purple tail on another.
“What is this?” I demanded.
Petyr proudly said, “A computer. A home computer. You have heard of the Apple? This is their next iteration.”
“Oh, come on. I could never use a computer. All that code, the green flashing light on the screen – would drive me nuts, I don’t have time to learn all that.”
“No, no, no,” he asserted. “This is supposed to be easy, much easier. See, they call this the ‘mouse’…” He proceeded to unpack all the parts, snapping cords into plugs, switching it on to reveal a stylized smiling face superimposed on a little box.
He was right, it only took me a week or so to get the hang of it. As I started to transcribe my “book” into the machine, he came in with both hands behind his back.
While the machine whirred softly in the background, he produced a clear glass vase, followed by red and yellow roses. After placing the bunch into the water, placing it on the desk next to the keyboard, got down on one knee, took my hand, and was about to speak.
“Yes,” I said. “Yes, of course.”
“You do know I just came in to ask you, please, could you type a little more quietly?”
His eyes twinkled as he stood up, pulling me with him, closer, firmer, while I nodded, saying softly, “You can’t fool me, you know.”
After the initial joy subsided, we started to plan.
“Let’s not make any final decisions, now. I want to wait, wait until I’m a year past my treatment, disease-free for a year, two years since the diagnosis. If I’m well, in remission, no relapse, then, yes, yes, we can plan our marriage.”
Petyr nodded, repeating, “Yes. Yes, as you want it. You’re right, of course.”
********
xvi
October, we sat in Dr. Viqueira’s office, waiting while he came back with the test results at my two year check.
He came around his desk, straightening his coat. He looked briefly at Petyr, down again at the papers in his hand, than up at me.
“Dr. Stein, I think…we’re going to have to do a biopsy, go in and see exactly what’s happening.”
Petyr almost shouted, “No! What’s happening? Is it back?”
Dr. Viqueira blinked twice, pulled his lips into a thin line, and said, “Yes. I think so, yes.”
That night, Steph came over. Petyr was distraught, and couldn’t manage a simple sandwich, much less the calls we needed to make.
“My mother first, I think. He said we should test all the family members, Eddie, George,…”
“Linda?” Petyr wondered.
“Linda, too.” I answered. “Steph, if you call mom, I think I can handle George and Eddie. They can get tested where they live, right? And you’ll make sure the typing, the HLA antigen results, gets to their doctors? It’s all so confusing, thank you so much. I know one of them will…”
“Don’t worry, we’ll find one. This is going to work out, Sarah, it will.”
In the end, it was Eddie. He and mom arrived by Halloween, ready for the trip in to Dana-Farber on November 1st.
“I read about this, sis. Sounds like a lot of fun, when they stab us there,” he said, point to his lower back.
I smiled, took his hand, and said, “I’m sorry, putting you through this.”
“You’re the brave one, Janie. Just point me in the right direction, I’m ready to go.”
Next morning, I waddled into the cath lab, mom tugging at the strings of my hospital gown, making sure it stayed closed, did not reveal too much.
“Don’t worry about it, mother,” I urged. “They’ll just down once I’m in there.”
She asked, “I worry about this sweetie. Putting that giant needle in your arm…”
“My chest,” I said. “Just below the clavicle. Don’t worry, it’s routine, they do it every day here.”
After the local, then the painting of my collar bone, I drowsed under the Valium and Nisentil. I wasn’t worried, just curious, when I heard the doctor say, a little too loudly, “Pressure there!”, the nurse ask, “What?”
“Extravasation,” he said. “I’m pulling back, just keep the pressure on.”
********
xvii
My days are filled with mystery and wonder now, inside this bubble. They said I’ll be here through February, 12 weeks in all, Eddie’s cells being just enough to keep me alive, but not enough to ward off the normal micro-flora we all live with, unthinking, every day. I would not survive a week exposed to that.
After much cajoling and sterilization, Petyr and Steph convinced them to let me take the Lisa in. I’d finished my story in September, but decided, it couldn’t end there, abandoning Michael Harrison to his future in Los Angeles, so now I’m writing it the rest of the way, all the way, to what end I do not know.
After the hematoma from the botched CVP resolved, they tried again, were successful, and I started sharing cells with my oldest sibling. I’d thought The Boy In The Bubble was just a Hollywood fable, but soon learned that, no, immunocompromised patients actually were expected to live in this splendid isolation, able to see, but never touch, the world outside, their friends, their family.
The second day, Petyr came in, with another vase of flowers. He set them on the table outside the bubble’s port, and announced, “I don’t care, Sarah. I have set a date for us. I’ve got the hall, told the boys, made sure they’ll be there.”
“What? No, Petyr, I want to be whole, be well for you…”
“Nonsense. I’m not going to lose you. Not now, not this way. We’ll make it work.”
“When? How?”
“Sunday. After your birthday. May 27. Everyone will be there, you’ll see.”
********
xviii
Sarah just handed me her pen, and that composition book she carries everywhere.
“Mother, I can’t anymore. I just can’t. Will you take notes, make sure you write what I say, what happens, OK?”
Honey, you know I’m not a writer. Can’t someone else, Petyr…?
“No, it has to be you. You’ll know what to do, how to do it.” She breaks down in another one of those coughing fits, then goes back to wheezing. She looks so tired, the circles under her eyes, her hair – her beautiful hair – so thin, so scraggly!
The doctor comes in, that busy one, who has to take care of all these people in the ICU. I don’t know how he does it. He really should get a haircut.
“Mrs. Stein,” he nods at me. “Sarah?” He lifts the sheets, listens to her back, her chest, breathing with her as he does.
“The pneumonia’s getting worse. The antibiotics aren’t enough,” he says. “It’s time for a ventilator, I think. You know what that means, Sarah?”
She nods. She must know, all the time she’s spent in hospital now. Then she shakes her head back-and-forth, back-and-forth. “No, no.” she struggles as she whispers. “Hooked up to a machine to breathe for me. No, I’m done with that.”
But Sarah, I say, your brother, Petyr, what about…
Again she shakes her head, “What’s the point, there’ll just be another time…”. She falls back in bed. She looks exhausted.
The doctor asks, “Are you sure, Sarah? You know what this means, the chances of…”
“I know. Let it go,” she says. “Let it go.”
********