Jan 25 2010

What You Must Do

Once triggered, a strong memory can hover. It stays close to the surface, stretching its legs after being folded into the recesses of the past, aching to be a story that’s told again. Just a week ago I wrote a few paragraphs about a gripping period in our life, five years ago, when Short-pants had a medical crisis. I don’t mean to dwell on it, but it comes to mind again this week, with good reason.

It’s a story we try to tell enough so Short-pants can own it without shame. It’s a story we try not to tell too much, so it doesn’t become the dominant story of her life. Sometimes, when I visit her room to adjust her bedcovers while she sleeps, I trace my finger along the arced scar that crowns her head. I once told her it was a permanent tiara. I’ve heard her repeat the phrase with pride. That’s the thing about a scar; it’s a story you get to tell for the rest of your life.

Short-pants’ six-week stint in the neurosurgery ward started before Thanksgiving and spanned the holiday season. I was prepared to throw in the towel on Christmas; I had no energy to shop, decorate or enact the role of Mère Noël. But friends and family pressed the spirit of Christmas upon us. They sent gifts for the girls, optimistic that Short-pants would survive, determined that Buddy-roo wouldn’t go without the full-on holiday fuss. Our neighbors surprised us with a 6-foot Christmas pine. And there were angels – so many people sent angels. We must have received five or six hanging angel ornaments for our tree.

One angel in particular was – and still is – my favorite. It was a gift from one of De-facto’s aunts, a woman who sets a classy standard for the family, a woman who has navigated the burdens of her life with tremendous grace. The ornament is made of silver. It’s heavy in your hand, and when hung by its lace loop, pulls the bow of the tree low toward the ground. There are words engraved on one of the wings:

You must do the thing you think you cannot do. – Eleanor Roosevelt

About the time this silver angel arrived, I was at a wall. It wasn’t much fun, being a hospital mom. Every day, punching the intercom buzzer to be let in to the ICU, sitting at Short-pants’ side, worrying and wondering while trying to assure her and give her hope. At the same time staying alert to the nuances of the doctor’s throw-away comments, hounding them down to find out what and why and when. I went to the hospital every day; De-facto and I took shifts, morning and afternoon, overlapping a few hours mid-day to be there with her together. By the time Christmas was near, I was completely spent.

I remember opening the box and rubbing my fingers along the wings of the angel, touching the words, as though I might be able to physically absorb them. Isn’t it perfect how the universe knows when you’re desperate and sends you exactly the message you need to hear? I will always cherish this angel. I have a little moment with her every Christmas; I have not yet succeeded to place her on the tree without weeping.

My mother had planned to spend the holiday with us that year, so she came as scheduled, bewildered at first about how to help, but then finding her way, baking Christmas cookies, doting on Buddy-roo. The hospital was very strict about “parents only” in the ICU. Whenever friends came to support us there, they were obliged to do so from the waiting room. But on Christmas day, one of the more compassionate doctors had a word with the nurses on duty, and an exception was made.

So there was my mother sitting on one side of the hospital bed, me on the other. She reached across Short-pants’ sleeping body and rested her hand on mine. I had grown accustomed to seeing my 3-year old daughter tucked tight under the blanket, emaciated, listless, with a helmet of gauze wrapping on her head. I was used to the machines and sensors and tubes. For my mother, it was startling and disturbing. “I just don’t know how you do this every day,” she said.

I can count on the fingers of one hand the number of times I’ve seen my mother in tears. She’s just not a cryer. But now she sat across from me, wet-eyed, pained to see what we were enduring each day.

“Somehow, you just do it,” I told her, “you do the thing you think you cannot do.”

These days Short-pants is fully recovered from that grim experience, immersed in her vibrant life, sometimes in the clouds, but with a well functioning intellect and imagination and a healthy emotional intelligence. My mother has relished the opportunity to watch her grow into the soulful young person that she has become.

But now I’m sitting by another hospital bed, the one that’s been set up in the study of my mother’s house, the bed in which she will be spending her last days. After a valiant contest with leukemia, an opponent that she held at bay for much longer than anyone – especially her doctors – expected, she is letting go. She will take no more treatments, no more blood transfusions. She has decided to let her life run its course.

This is hard. It’s hard to say goodbye, it’s hard to see her suffer. But I know what I must do. I will sit beside her. I will hold her hand. I will squeeze it so she knows I am there. I will hold it the way she has always held mine. I will do that thing – if I must – the thing I think I cannot do.


Oct 21 2009

The Ledger

“Come with me,” she said, a command that once upon a time would elicit a groan. She led me into the room that is part-laundry room, part-office. I watched her open the bottom drawer of her filing cabinet. She pulled out two ledgers.

“This one has all my medical expenses.” She opened the pages to show me the rows of entries, evenly notated in handwriting I recognized from grocery lists and birthday cards and notes she wrote to school excusing my absence. That’s something you never forget: the protective lines and loops of your mother’s handwriting.

She pointed to the pages in the front. “These are things I paid for, every day things like prescriptions and lab tests.” She flipped to the pages at the back of the notebook. “These are the big medical costs – covered by insurance.” Her familiar index finger tracked down the first column, running over all the words. Oncologist. Chemotherapy. Blood transfusion. Everything detailed. Everything organized.

She opened up the second ledger. Like the first, its columns were neatly labeled and ordered; each page separated by a pile of loose receipts retained for her records. “This book has all my expenses for the year, for my taxes.”

That’s my mother, always organized, preparing to die the same pragmatic and efficient way she’s always lived.

She desperately needed help going through the upstairs backroom, she said, so we obliged, her three grown children following her up the stairs with an eagerness un-witnessed during our childhood. Backroom, in our family, is a euphemism for junk room. The downstairs backroom is a history project, filled with our parents’ past; their love letters, college papers, every issue of Good Housekeeping magazine, neatly boxed, saved since 1958 or thereabouts.
upstairsThe upstairs backroom, once my brother’s room (with football-patterned wall paper) and then mine (painted white but with bright yellow and neon green shag carpet), now a third guest bedroom rarely used not only because it is the less grand of all the bedrooms, but because the bed was completely covered with bags and baubles brought home from meetings and conventions, or those awkward gifts received from well-meaning friends with taste so strikingly different that their generosity, though appreciated, is never fully utilized. At the foot of the bed, a row of boxes of belongings earmarked for a future yard sale. All the framed awards she received during her admirable career – too numerous to fit on the walls – piled on the shelves and on the floor, stacked against the wall. In the dresser drawers, things too precious to part with, ivory kid gloves from a governor’s ball, a silk purse her mother bought in Hong Kong, old black and white photographs, our baby teeth hidden in tiny envelopes, dated in my father’s handwriting.

It’s always the hardest room to clean, the one packed with things of only sentimental value.

The doctors never thought she’d live this long. Last winter, when the diagnosis of pre-leukemic myelodysplasia first pounded its gavel, they ordered a palliative treatment, a mild chemo easily administered five consecutive days in a monthly cycle, a treatment as inconvenient as having your period. In addition, frequent blood transfusions to introduce new cells to replace her tired, incompetent ones. Lots of doctor’s visits and the requisite poking and probing, but all of it relatively close to home and all of her loyal friends have rallied to help, taking turns driving her to all her appointments, checking in on her between medical visits. Though she is still more than capable to drive herself, good company is never a bad idea.

She has a quality of life that is absolutely acceptable. Of course she has slowed her crazy itinerary of activities and travel. But she still does a lot: a dizzying dance-card of lunches and dinner dates with friends, an occasional board meeting, her own shopping and errands. She lives more wisely now, doing only what she wants and using her lack of white blood cells as a good excuse to cut out anything extraneous. After each monthly transfusion, she gets a boost of energy and feels good. But her marrow won’t manufacture the good blood cells she needs, so she’s vulnerable to infection. She avoids crowds and coughing strangers. She won’t die of leukemia; she’ll die because of what the leukemia won’t let her fight.

There is, in fact, a growth in her lung. Is it a tumor? An infection? A fungal growth? The doctors aren’t sure. But the risk of an invasive procedure to determine its nature is deemed too dangerous. Even if they knew what it was, they wouldn’t treat it. A surgery brings too much risk for infection. A stronger chemotherapy also exists, but the doctor opts not to administer it because it requires a portacath, which can too easily become infected. The thought of such medical paraphernalia gives me flashbacks to when Short-pants was in the hospital and her stay was lengthened because the permanent drip became infected, leading to a sepsis that set her recovery back at least a month – and who knows how close she came to not recovering as a result of that secondary infection, an infection my mother would not be able to overcome.
autumn_trees
But she looks so beautiful, my mother. I couldn’t take my eyes off her. She smiles. She laughs. She doesn’t look or act sick. She is living in a state of grace, I think.

Her doctor’s priority is not to cure her – since that is impossible – but to slow the disease so that she might have a quality of life while preparing for its end. For over a month now she’s been off the chemo treatment, and she’s no worse when she was on it. The doctors are baffled to see her doing so well. My mother’s constitution, in the end, is remarkable.

I asked her if she was scared. “No,” she said, “Dying is a part of life. Nobody can live forever.” This is indisputable; it can happen to any of us, any day – a fluke car crash or the diagnosis we dread – just like that. But once the sentence is offered, the disease is certain and incurable, I can only imagine what it’s like to stand on the threshold of the uncertain mystery ahead.

She shakes her head, not with resignation but with gratitude, and lists her fond memories: a happy childhood in Havana, enjoying college, all the good years with my father before he died. My siblings and I have managed not to disappoint her. She had a serious career when many women couldn’t, and even in retirement, continues to make an impact in her field. She’s traveled all over the globe. She adores her grandchildren, and this is reciprocated.

There’s no place on her ledger for remorse. She’s just counting up all the good things, year-by-year. Except that now she notices them day-to-day. You can’t imagine how much I am in awe of her, my mother, still modeling for me how to live – right up to the end.


Jun 9 2009

My Mother’s House

porch_railingI enjoy a luxury that many of my peers do not: my mother lives in the same house that I inhabited for the first 18 years of my life. Her home is our family’s homestead; going there is not only a visit to see her, it’s also a return to my own history.

It helps that my mother has been in no rush to throw away the artifacts of my childhood. The toys that I played with as a little girl are still here, stowed in boxes in a dusty backroom, pulled out whenever a visiting friend brings a grandchild along, or when her own come to stay. The subject folders from all of my high school classes, with homework in the left pocket, tests in the right and notes in the hole-punched center section, are stacked in chronological order on the top shelf of the closet of the room that was once my bedroom. The room has been renovated to receive overnight guests, with the exception of the interior of the closet, which looks as it did when I left it so many years ago, like a hidden shrine to my youth.
upstairs_hall
I asked my mother to walk through the rooms of her house and tell me their stories. In each room, she’d settle herself in a comfortable chair and then she’d look up, as if she was looking into the recesses of her memory to find an anecdote. Something about the makeshift dining table my father constructed when they first moved in. Or how the long bedroom upstairs was filled with glass cases, like a museum, when the previous owners lived here. Or about how she won the dispute with my father during a renovation, about making a unused door into an elegant window. In the living room she recalled setting up extra tables and making seating arrangements for dinner parties and the laughter that these events produced. Upstairs she remembered when and where they bought the bedroom furniture, and named her uncles and aunts in all the miniature black and white photographs hanging together on the wall.
bedroom_window
This morning I lay in bed, staring out the window as the sun stretched its arms across the fields beside our house. Thirty years ago, on any June morning, I might have lay in just the same way, looking out at the leaves on the branches outside the window, motionless in the fresh new day. The sounds of morning in this room are as they always have been; the chirping birds, an occasional car racing down the road in front of our house, a water pump clicking on and then off down in the basement, muted but audible on the second floor of this old Victorian farmhouse.

I tiptoed across the hall and peeked in at my mother, soundly asleep on what has always been her side of the bed, even though she’s slept alone in it for the last twenty years. I slipped under the covers beside her, just like Short-pants or Buddy-roo cuddle up to me on any given morning. I remembered how once, years ago, when I was about 10-years old, I’d curled up on the couch with my mother and she said to me, “Are you ever going to be too big to cuddle with me?” And I told her, “Never.”