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I'm not usually one for disclaimers, but this is a piece on a subject about which I've previously said very little publically. So, indulge me -- allow me to clear my throat and ease into this a bit: I wrote the following essay a week or so ago in my writing group. The prompt was simply "before." After I wrote it, I felt some relief, a lifting of a weight. But I felt even more of a burden lifting after I read it aloud to the group and got some nods of agreement. I realized then that although this is a deeply personal issue, it is one I need to talk about. I know I'm not alone in facing issues of fertility and infertility (cancer-related or not) but it is not a subject we discuss much outside of our bedrooms and doctor's offices, and thus everyone facing these issues feels tremendously alone. I'm finding that carrying around these feelings of sadness and hurt, confusion and judgement (yes, judgement) to be a very heavy weight. And, like most burdens, I know it will be lighter if I walk in the company of friends. It doesn't mean I won't cry anymore. In fact, that's probably a given. But tears also release tension and so I say bring on the tears, and the laughter, and the chocolate. Whatever it motherf-ing takes. -- April
Before
I'm sitting alone at my dad's Scandanavian-style, pale wood drop-leaf kitchen table, the one around which we've managed to fit two adults and three kids-then-teens originally, and later when, as adults we come bacck with our growing our families: seven adults and two kids. At those times, all hard angled knees and shoulders and elbows fitted side by side, so crowded you had to inch sideways to and fron your seat, your jeans rubbing the thin table edge on one side and the blue and white tiled island scrapes against your pockets on the other. This table is the witness, the one that remains. It bears the scars and life lines deep in her wood of living with a family through thick and thin, infant to adult, birth and death: grooves, water marks, sun bleaching, ink and dried out patches.
On this day, though, there is no sun splashing across the table from the floor-to-ceiling windows overlooking the mountains. Instead, outside wind and hail and thunder rage, keeping the view cropped close. Inside where, in the past, my dad's fires were notorious for sending the mercury to 80 degrees and above, causing us all to go from freezing to strip down to Ts and tanks even on the most wintery of days, today I'm shivering in the grey afternoon, pulling my hood over my ears. I'm ill-prepared for this arctic April freeze that seemed to arrive from nowhere. Today there is no cozy fire crackling in the woodstove (I won't be staying long enough to make it worth the effort), and to my right a freshly broken window lets in an icy draft that sends goose bumps prickling up and down my arms, the draft infiltrating easily my novice cardboard-and-packing-tape patch job.
I'm here despite the storm to do time-consuming, laborious things like pack my dad's T-shirts and shoes and belts into black plastic garbage bags, but I have something else I have to do first. I'm sitting at an empty table in an empty house with a stack of back and white forms before me because I have a looming deadline and I thought I'd easily tackle them in a quiet place. (I hadn't intended for it to be as lonely and cold as an iceburg, that's just bonus.)
I pick up the first form and write my name in the designated place. OK, great, good start! My eyes scan downward to the first question, my pen poised in a getting-shit-done sort of way. "When was your last menstrual cycle?"
Hmmm. I skip ahead and read the next, and the one after that, and then the whole page:
"How often do you and your partner have intercourse? ____ x per week/month"
"If you've done IVF before, what was the outcome?"
"Have you ever had a successful pregnancy?"
"Have you ever tried to get pregnant with someone other than your current partner?"
Too many questions, they start to swirl around me like mosquitos. Even the seemingly innocent first question -- when was your last menstrual cycle? -- is hard. Last true one? March 2012. Last spotty, weird one? Last week.
Overwhelmed, I put my pen down and reach for my cell phone instead. The woman who answers my call at the fertility clinic is curt: If you don't get the paperwork done today, I'll have to give your appointment to someone who is better prepared.
I'm stunned.
The unspoken message between the lines hangs in the moment of silence that follows: I'll have to give your appointment to someone who wants it more.
Someone who wants a baby more than I do?
I feel caught between different branches of science and medicine: On the one side these fertility experts who have the knowlege and the tools to help me but are hassled by my questions and hesitations and concerns about hormones and drugs and money. And on the other side is my oncologist who's chemo drugs saved my life, but also dried up my ovaries and paralized my eggs before they had a second at-batt.
Because I aready have been luckier than some: Three years before my cancer arrived, I cashed in one of my eggs and got my beautiful daughter in return. It was so easy back then. Of course, back then I thought a few months of trying was pure torture. I was 30, playing fast and loose with my biological clock. My mom was one year in her grave: She couldn't hurt me anymore, and so I decided it was safe to start a family. So I turned the car around, so to speak, ceased the years and years and years of actively trying not to get pregnant. I stopped the daily Pill, the condoms stayed in their wrappers, and the pink, rubbery diaphragm I never liked anyway stayed in the back of the drawer in its cream-colored clam-shell case. So much money and effort invested in keeping Mother Nature from her singular mission. I thought a pregnancy could sneak in as simply as falling off a log. What is this "trying to get pregnant"? And then, to my surprise it did take a little time, a little planning.
But, ultimately I opened my heart and my womb to the universe -- trusted my desire would be met -- and the universe delivered.
That was before.
This is now. Now, with an FSH level of 30 the doctor said plainly, "I would be very surprised if you got pregnant on your own."
That discussion lead to a referral and this stack of paperwork in an empty, freezing house. (The metaphor of the emptiness is not lost on me.) I look through my stack of papers, and then at my husband's twin stack beside it. It is like a loan application only more personal, intimidating and tedious. As I look, it strikes me as odd that my husband's questions are nearly identical to mine. Can't I answer all these for both of us, like the partnership that we are?
My eyes linger on, "How often do you and your partner have intercourse? ____ x per week/month"
I wonder, will his answer be the same as mine? What if his estimation is more or less than mine? What then? Is this a test? If we answer correctly do we get a baby? Who decides? Deep down I'm afraid it is the bank and the credit cards that will ultimately decide, not a doctor, not my scarred and broken body. How much we spend on this is a big question. How much of our existing daughter's security can be / should be spent in the persuit of a sibling for her?
Eventually I finish my stack of forms in triplicate. Grimly I put the papers in the red folder and shove the whole thing into my black shoulder bag. And then I stuff my ear buds into my ears and crank up Milky Chance till it thrums through my head and I turn to filling the back bags with T-shirts that still smell like my dad, and to cutting fresh cardboard to patch the broken window. Later I drive carefully through the hail that carpets the ground like snow back to my warm house and the life that I've created for myself.
I put the red folder on the counter and there it sits for a day and a half (missing the fussy lady's deadline) and then I dial the fertility clinic and I reschedule my appointment from spring to summer, April to June. There are some things I can face head on, but it seems the science of making a baby is not yet one of these things. Maybe I'm nostalgic for the old fashioned way. For before.
Before the cancer, before the menopause, before the forms and the price tags, before receptionists and doctors. When there was simply love and lust and excitement and a whole world opening up before us like the dawn cresting the mountain.
Like we were 30.
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Mama?
Her voice comes to me one evening just as I come in from the cold and dark (this was before the time change, one day when it actually felt like winter for a change). I set my purse on a kitchen chair and lie my coat across the back of the chair as well.
Mama. Her voice is solemn and I catch her tone, looking up finally. She is standing before me all big eyes and small, bird-like arms, legs and shoulders.
Mama, Daddy and I need to talk to you about throwing away my art.
My stomach flutters. Uh oh. Busted.
Behind her, my husband nods his head.
Although this was my first time being confronted, for years I'd be sifting through her art, first finger paintings and scribbles, mostly done here on the kitchen counter and then later creations sent home from preschool. The scribbles progressed to faces, rainbows, trees and flowers. Then she began to add words to her drawings: first her name, then other labels like dog, cat, April, Joe. I sifted through, saving a couple, but mostly discarding them. It was more about the process, I told myself, than the final creation.
Don't get me wrong: I love every single brush stroke, scissor snip, and dotted i. But... well, clutter attracts clutter, right? And clutter after a little while (like, five minutes) feels like oppression and clausterphobia, a dark reminder of the past, to me.
Two weeks ago I celebrated my birthday. A couple of days before, my six-year-old fretted about what to give me.
I'd like to paint you a picture, she said. But who knows what you'll do with it.
And so in the spare bedroom, beside my tiny desk, on the corner of the bed there is now a stack. A stack of paintings, drawings, worksheets, cardboard tied with string, dried flowers. Paper upon paper, two feet tall and growing, all of it created by my young artist. I ask my friends, desperate for their secret, What do you do with all the paperwork?
But no one has a satisfactory answer. Buy a plastic bin and put it under the bed. Take pictures of it. Use it as wrapping paper. Decorate a room with it, ceiling to floor, wall to wall. This last was my idea. I'm daunted. She's only in first grade, after all, and here is this mound.
When I quake before a stack of papers it is because I come from a family that threw away nothing. Just last week I threw away jars of dry beans, rice and pasta from the 90s. Stacks of mail, sometimes unopened, gathering dust. Spare buttons, dead pens, journals started and forgotten three pages in. Birthday, anniversary, graduation, and holiday cards dating back to the 50s. Locks of hair, green participation ribbons, immunization records. Every drivers license ever issued, every paper insurance card ever acquired -- health, dental, vision, car. Old bottles with a couple squeezes of shampoo or conditioner remaining trapped inside, a smidge of soft scrub, used candles, spent flip flops, flimsy slippers and a baby blue sleep mask stuffed in a drawstring velour bag -- a souvenir from the worst vacation ever. All saved for what? Just in case? Optimism bordering on neglect? Maybe it's the other way around?
In this house many a family dinner was eaten on our laps or picnic-style on towels spread on the blue shag living room carpet because the table was buried under stacks of paper: magazines and catalogs, paper sewing patterns, textbooks, calendars, grocery lists, receipts, fliers. It is not like there were no filing cabinets. No, filing cabinets, file boxes, desk drawers with hanging file folders abounded, all bursting with the accumulated paper of a collective family lifetime: tax returns, duplicate checks, book reports and report cards, service records, warranties and owners manuals. Bills paid, statements for accounts long since closed, printed directions fom MapQuest, newspaper clippings, and email correspondance. None of it burned, recycled, crumpled, or tossed. Simply stacked, set aside, and forgotten, destined to outlive its owner.
And so, like a pendulum, I swing the other way: mail is opened and sorted a few steps from the mail slot, receipts declined at the register, magazines read and passed on. A steady stream of paper flows through, discouraged from lingering. And yet, I realize as I stare into my daughter's brown, dead-serious eyes, there is a limit. I realize I may be guilty of sweeping away too much in my desperate attempt at controlling the tide. Perhaps all she is asking for, this child of mine, is a record of her life, a sign she was here.
Don't brush away her baby footprints so fast, mama.
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Today is my birthday. I used to think such declarations were a bit self-centered. Now, I want to shout it from the roof-tops: I LIVED ANOTHER YEAR!! I'M THIRTY-FUCKING-EIGHT!!
It was a rough year, for sure, as my dad's diagnosis was just a couple of weeks after my birthday last year, and so I spent much of my 37th year grappling with his sickness and passing and the aftermath. But still, I am here, earthside. So, yes, I'm a fan of birthdays and while I don't neecessarily want to live to 100, I do want to live a good long time yet.
Take that cancer!
As a nod to my cancerversary, which is coming up next week, I thought I'd post a snapshot of 30-something post-breast-cancer life, starring my buddy the foob*...
My 4" Scar: All That Glitters is Not Gold
"Turns out," he said, and then laughed awkwardly, perhaps wishing he hadn't spoken, afterall, we didn't really know each other that well. "Turns out, if you cough with dentures in, sometimes the top bridge shoots out of your mouth and flys acrosss the room." He reddens at this admission while I laugh at the image of this shy man so betrayed by his teeth.
I think to myself: Turns out, if you have your breast removed and stuff your bra each day with a tan, silicone blob, you could be walking downtown one day and feel a soft plop on your shoe, only to look down and see your breast lying there. On the ground. Just right out there in the open, for anyone to see.
But I don't say this. Afterall, we don't know each other that well.
Sometimes the foob betrays me, and other times I say to myself, F--- it! Fly that flag!
And so there is the night I drink too much and say, "Does anyone want to see my foob?" My party trick. I reach into the armpit of my shirt and whip it out. It looks obscenely real, this flesh colored dome of silicone. It's sexy for maybe half a second and then it's confusing because what is a breast without a body on which to perch? My friend's eyes widen and then she sets her wine glass aside and takes it in her hands like something sacred. She bobs her hands, weighing it, poking at it. We both laugh at the little nipple-like protrusion and ask, "Why?!"
More laughing and then I push it back into my bra, and I go back to being symetrical.
The soft form warms to my body quickly, hugging the purple scar that stretches 4" horizontally across my rib cage, sternum to armpit. My ribs poke out tenderly where the surgeon scrapped away the cancer, all the way down to my chest wall. It's the thinnest part of my body now. A sharp valley in a landscape of curves and hills.
This scar.
What to do with this scar. Tattoo it? I'd like to eventually. I thought I would right away but now the idea of taking a needle to those tender ribs makes me cringe.
When my daughter was four and the scar was still new and healing, she ran her fingers along its raised edge and cried and cried. This breast was hers. It fed her, nurtured her, comforted her when nothing else could. And what had I done? I'd cut it off and flung it as far from my body as possible. The loss of this breast was a loss my daughter morned pitifully.
Not long after my last chemotherapy treatment she picked a fluffy dandilion and blew on it, scattering the seeds, and as she did so I heard her wish quietly for the cancer to be gone. "Oh, but honey, it is gone!" I rushed to say, thinking somehow she hadn't known the good news. "But... when will your breast grow back?" she asked sadly.
And that's when I knew my decision not to pursue reconstructive surgery didn't just impact me. I thought I didn't care about breasts. I thought having my life was enough. The whole "save the ta-tass" campaign had always seemed a bit shallow to me. But in this moment, comforting my daughter over the loss of this breast, I could see they do matter, just not in the way I thought. It mattered tremendously that when my child cried and I hugged her to me that my chest didn't feel against her cheek the way it once had. And so I went and got a replacement, which was more than just a pillow to stuff in my bra. It turned out to be an almost life-like prosthetic, which my daughter now adores. In a way I'll never fully understand, she has bonded with the foob and will lay with it any chance she gets.
Despite her obvious joy over the thing, for awhile I still thought I didn't care. I thought I could take it or leave it. I thought, it'll just be my sometimes foob. My party foob. My dancing foob. My dress up foob. But in the two years since I've had it, it's become my every single day foob. I feel strange without it now, acutely aware that nature favors symetry. As my daughter as, I've also bonded with this tan lump. It is my armor. It stands between the world and my scar: my tender spot, my cancer story.
That is, unless it falls out on the sidewalk. Plop!
*Faux boob. If you'd like to more foob, here is the tale of the foob coming home with me and Nia's first impressions of it. And here is more on Nia's deep, deep sadnesss over my mastectomy, and the first time she touched my bandages.
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In these months following my dad, George's death, I've begun to write a book. It is a memoir, a self-reflection, on my journey from cancer to caregiver, from loosing my dad in my 20s to finding him again in my 30s, only to loose him again for good before 40.
At first it was hard to write because poking around at memories felt like an insult. Not an insult to him and his memory (he urged me to write almost more than anyone). No, an insult to me and my open, broken heart. But ever since I was young, I've always managed to heal myself through writing and so I made mysef sit down and write something -- anything! -- each day, even if it was just 10 minutes worth and I wanted to throw my noebook across the room afterward. (Which was frequently true.)
Still, I wrote.
And gradually, as the notebook filled, the pain began to lessen its grip. A bit. At first I didn't have a clear destination with my writing, but I often found myself writing about my dad's so-called cancer journey -- that metastatic pancreatic cancer Autobaun -- more often than I wrote about anything else, and as the frequency picked up, so, too, did my desire to write about him. I wrote about his diagnosis and treatment, hospice and dying, but also about the little moments in between that constitute a life, even if life is happening at Stage IV.
In the beginning, mostly I wrote at night, my notebook open on my lap and a fast pen in my hand.
A deep breath, and as I looked at the blank white page, words would start to bounce around in my mind, images would appear behind my eyes, my heart would ache inside my ribs, and my pen would begin to move.
So often it was George who flowed through the blue ink. He'd emerge on my page just as he looked every day of my life -- Levis, worn work boots, t-shirt under a heavy, quilt-lined flannel button shirt. Tan, hairy arms, a thick head of hair gone more salt than pepper, a mustache to match. Creases in the corners of his eyes -- laugh and smile lines. Worry lines etched across his forehead because a life lived is often some ratio of joy to sorrow.
Another deep breath and I can smell him: it's the leather of his gloves, boots and wallet, it's cut wood, it's damp soil, it's warm sunshine on a redwood shingles, it's grease and diesel fuel, it's deoderant and aftershave and a lifetime of Head and Shoulders shampoo, it's Tide in the washing mashine, and Dial/Dove/Ivory in the sink.
Another breath and I can feel the warm, soft flannel of his shirt against my cheek, his arms around me in a bear hug.
And in this way, my pen has become my time machine. Ink to paper, my eyes sort of glaze over and I'm looking at something behind my lids... but not just looking back, no it is also smelling, tasting, touching, hearing. Feeling. And yes, looking, too. We, my dad and I, are side by side in his little silver electric car, soaring down the mountain road, the light flashing through the maple and bay leaves, fir and pine needles. I'm driving, and he's beside me in the passenger seat, our twin water bottles between us in the cup holders. Each of us is hidden behind dark sunglasses.
If this is a true memory, the car is bearing us down the hill to Silicon Valley, to an oncology appointment. We are silent with worry, or maybe discomfort. But, I've discovered time travel is a free spirit, not a slave to memory. And so I feel the leather of the steering wheel against my palms and I guide the car north instead, along the crest of the mountain. We follow Skyline Boulevard through Douglas Fir and Madrone, Oaks and Bay trees lining the road. The sun is on my left, way out over the Pacific, hidden by the lower elevation hills and the trees, but I know it is descending toward the horizon out beyond Pescadero and will soon splash red and orange onto the clouds here above us. As we cruise along, we pass through stands of magestic, stead-fast Coastal Redwoods, the sun even more muted here by their giant trunks and skyscraper heights.
Now a fog is rolling in. The little silver car slices through patches of it resting in white cotton-like masses on the highway. As we emerge from the damp white we are suddenly sorrounded by the rolling golden hills that give California her nick name. The Bay Area stretches below out my dad's window, and on my side the hills roll down toward the open sea. We wind along the road, a tiny dot moving along the very edge of the continent.
I slow the car and pause for the stop sign at Highway 84, and then switch on my left turn signal. I ease the car into a parking spot in front of Alice's Restaurant. Tonight the motorcycle hangout is a buzz with mountain locals home from Bay Area jobs and schools. We cross the wide wooden deck and enter by the bar. The atmosphere is casual, relaxed. We take an open booth among the regulars: the single guys at the bar, the families at the tables, one or two dogs lying underneith. It is loud -- conversations mix with a couple flat screen televisions broadcasting baseball games. The Giants on one, the A's on the other.
George takes out his glasses to read the menu, though he almost always orders a variation on a theme: fries, cup of soup, lasagna. Tonight is no different: he gets the pasta, the chicken tortilla soup, the sweet potato fries, and a regular coffee. Meanwhile I mill over the menu, finally choosing the tuna melt, house salad with bleu cheese, and a Chardonnay.
The waitress takes the order and moves away from the table. George puts his glasses back in the hard, black case, and puts it in his breast pocket. He looks acrosss the table at me and smiles.
"So? What's new with April?" I sniff at his use of my name and smile back.
I feel tears pricking my eyes -- but these are tears of the present moment. My time travel machine is weakening, pulling me back to the present. Stay with it!
"I'm ok, Dad. Doing a lot of writing lately."
I bite my lip and a tear betrays me and splashes on the notebook page, and I'm back in my dim living room, alone. But the memory of that car ride and our dinner together feels real enough and I'm grateful for the time spent together tonight.
In this way I get to see -- and smell, and feel, and hear -- my dad often. At first it was every night. Now it is less frequent, maybe once or twice a week, as my need changes. It is always real: the feel of the leather booth seats under my butt, the clink of ice in the plastic water cup in my hand, the greasy smell of burgers frying and ketchup floating in the air.
I'm ok, Dad. I'm writing a book finally.
Well, good for you, April! His smile is full, genuine, creasing the corners of his eyes.
And then the waitress arrives with his soup and my salad, fries for both of us, breaking our eye contact. I sip my wine and we drift in and out of conversation as we eat, laughing now and then, sometimes comfortably silent -- like every other father-daughter pair eating dinner together tonight across the planet.
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Greetings! I've been a bit MIA from my blog recently. But trust I'm well, and I'm writing! Here is a piece I wrote yesterday on World Cancer Day...
Yellow as September
It started with yellow,
Ended with yellow,
And yellow lived at the core.
Yellow, goldenrod, canary, No. 5.
Yellow: the soft, tattered T-shirt you wore the last time you left home.
Yellow T-shirt held to my nose, inhaling your scent, months later.
Yellow was the "cheerful" hospital gown and the backs of your hands as you struggled with death.
Yellow are the new floor boards in the room we prepared for you, reflecting the sun, panoramic views of firey sunrises and smoldering sunsets over purple mountains.
Yellow as a mango, I said when I saw how jaundiced you were last March.
Yellow bathroom, yellow lighting, you shrugged to explain why you hadn't noticed: yellow skin, yellow eyes.
Iodine smeared on your Mediport,
Chemotherapy prepared by a nurse in a yellow bio-hazard smock.
Hard yellow candy when the port is flushed to mask the sudden saline taste in your mouth.
Yellow double line down the highway, I drive you home, nauseous.
Jars and jars of yellow chicken broth, all in a row, waiting.
A splash of lemon juice in your water is all you want.
Then yellow scrambled eggs -- a little cheddar cheese, a lot of butter. We sit across the table from one another.
On good days.
On bad days, I sit alone.
From spring Buttercups, to dry, yellow grass, to juicy Golden Delicious apples: the orchard out the kitchen window marks the passing time.
Your golden hour; the final seasons of your life.
I start the old yellow dryer, wedging the broom handle just so to keep the door shut.
Behind me, rows of golden honey sparkle dully in the gloom of the laundry room slash pantry.
Mementos of another time.
Yellow: your peanut M&M wrappers. Once a guilty pleasure, now forgotten.
Yellow: the plastic water cup by your bedside.
Yellow: the maple leaves that litter the driveway you once kept so clean.
Yellow: the color of the hair of the nice nurse.
Yellow: the notebook I clench in my teeth as I climb to the roof the day you died.
Yellow: the daffodils that bloomed this week, not knowing you are gone.
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This last weekend, my brothers and I, along with many relatives, buried both our parents in the family plot in Tennessee. In the past several months, I've spoken a lot about my dad, his cancer, and our relationship, but besides this solitary piece, I haven't shared much about my mother. After 37 years, as I bury her ashes, I'm also ready to bury the silence, to bury the shame that surrounds mental illness and suicide, and to speak up about what it means to grow up in a home with a mentally ill parent. And so I'll begin on her last day, her first day, and the daily struggle in between in an effort to explain how it came to be that she took her own life. It is my hope in writing this that I'll help individuals and families who struggle with the depression and or personality disorder of a loved one. ~AJS
Grete Hafstad Johnson, January 7, 1957 -- July 11, 2006
Eight years ago on a still summer night, my mother, Grete Hafstad Johnson, made good on a promise that had hung over our house for many, many years like thick smoke: She took her own life.
While the act itself was infused with violence and drama, it was an entirely swift and solitary thing she did. Unlike past attempts, this time she did not leave a note, she did not call anyone to say goodbye, she did not make anyone a witness, nor take anyone with her.
One minute she was here, and then next she was gone.
Her death, like many things in her life, was entirely on her terms.
...
Grete was born January 7, 1957 in Berbank, CA: the first in her family to become a US citizen. She was the third child of Liv and Gunnar Hafstad -- the baby. Golden curls and turquoise eyes. She was always petite and beautiful. But do not mistake small for fragile! She was tough as nails. Strong, opinionated, out-spoken, a fire flashed behind her eyes. Smart, funny, driven to create: she cooked, painted, sewed -- when we were young, she had a business called One Stitch At a Time. There was always a project (or two or three) strewn from room to room. Pieces of this fabric and that paint here and there.
Grete grew up on a quiet street lined with brick and stucco homes and neatly appointed lawns in the well-to-do town of Monte Sereno, CA, attending the prestigious Los Gatos public schools. Family vacations were long trips to visit family in Norway and camping in the breathtaking Yosemite National Park. It was not uncommon for the family of five to camp for three weeks at a time!
In high school, Grete began dating her brother's best friend, George, and less than a month after she turned 18, they were married on a rainy February afternoon. The bride wore a traditional, long white gown with sleeves, and a veil her mother had painstakingly sewn. The bridesmaids wore light blue and carried bouquets of white and yellow flowers.
My mother's naturally curly hair was worn long and straight and flaxen. She had rolled it on orange-juice cans the night before and ironed it to perfection with the clothes iron.
After a few rentals and house-sitting gigs, George and Grete eventually moved from town to the Santa Cruz Mountains. Their home consisted of three rooms and a garage they converted to a bedroom. A bathroom was quickly added, too. And soon they had all the ingredients of the American Dream: an entrepreneurial spirit, energetic youth, home ownership on a few acres, three children, a couple of dogs and cats. Later there would be horses, chickens, peacocks, rabbits, and even a few transient goats.
And slowly they developed a Christmas tree farm with a beautiful orchard of organic apples, pears, nectarines, peaches, and cherries.
All the while the children grew, George worked at IBM in San Jose and co-captained the mountain volunteer fire department, and Grete worked in the home. Later she took part-time work as well, one job as a cashier at a shooting range, and another as a bus drive for the mountain elementary school, guiding a 48-person bus around hairpin turns.
She was known in our community as a devoted mother (she homeschooled three kids!), a lucky woman married to her high school sweetheart, a skilled cook inspired by the natural foods movement, an avid road and mountain biker, and a creative spirit.
And when she died, the church was over-flowing with people who testified to this popular portrait.
But it was an incomplete picture, one I'd like to expand today.
Every day my mother thread a needle on her sewing machine, picked up her rolling pin, or dabbed her pain brush in a bit of paint, she did so under the heavy burden, the black cloud of a terminal illness. Grete suffered from a serious, life-long mental illness called Borderline Personality Disorder (BPD), which is marked by unstable moods, behavior and relationships.
Men and women with this disorder struggle to regulate their emotions and thoughts, frequently succumbing to impulsive and reckless behavior, and consequently are challenged by unstable relationships with other people.
If you knew her, maybe you recall an encounter with Grete marred by inappropriate, intense anger, or a time when she had difficulty controlling her rage. Maybe you noticed she seemed plagued by unexplainable paranoid thoughts.
On top of this mood disorder, Grete also struggled every day of her life with the double whammy of severe depression. Some days she was filled with almost child-like joy, energy and enthusiasm -- and other times, she struggled to even get out of bed.
When she was happy, it was like standing in a beam of radiant sunlight to be with her. When she was upset or sad, however, it was terribly, terribly cold in her shadow.
Her emotions were a daily roller coaster of highs and lows -- joys followed by sorrows, calm followed by rage. Day by day, hour by hour, her mind an ever shifting, changing landscape, and she the unwitting passenger. Because of her illness she trusted very few people; friends became enemies over night -- this included her husband, children, parents, siblings, and close friends. Every day she was tossed about at the mercy of her emotions as if she were a rag-doll in a tornado -- and all of this was largely invisible to the world outside our home.
Her pride was great: she worked hard to present an image of herself and our family as normal. And to a large extent she was successful -- the packed funeral and testimonials of friends and colleagues eight years ago prove that. She kept a high, tight wall around her.
But often the burden she bore was too much. At home she let her guard down, and the rage and the sadness and the paranoia would pull her out like a log caught in a rip current. And then prescription drugs and psychotherapy fell short.
The statistic is 80% of the people with Borderline Personality Disorder have suicidal behaviors, and one in 10 is successful in their suicide attempts.
And so that fateful summer night so many years ago now when my mother died? That day? That was the day she simply said, "Enough is enough."
She stepped off the roller coaster of rage and shame and pain. That day we lost a wife, a daughter, a sister, a friend. We lost a woman who for 49 years lived her life as best she could. As her daughter, as someone who grew up in the eye of this storm, I've finally come to realize that while her life was far from perfect, she did the very best she could with the cards she was dealt.
Devoted mother.
Loving wife.
Skilled artist.
Avid cyclist.
Mental illness warrior.
The battles have been waged. The war is over.
Rest in peace, Grete.
Rest in peace, Mom.
...
Resources:
BPD Central: Borderline Personality Disorder Information and Support for Patients and Families
Understanding the Borderline Mother: Helping Her Children Transend the Intense, Unpredictable and Volital Relationship
Stop Walking on Eggshells: Taking Your Life Back When Someone You Care About Has Borderline Personality Disorder
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I remember picking up my flannel pillow and pulling my twin-size down comforter off my bed. I balled them up together as best I could and then lugged the heavy bundle up the stairs, dragging a large portion of it on the floor, stepping on parts of it in my sock feet. Dragging a chair across the kitchen, I got a tea bag down out of the Good Earth tea box in the cupboard. Cinnamon filled the air. Near-boiling hot water came from the tea kettle on the wood stove, it was always there, always hot in the winter. With all my supplies ready, a book under my arm, I made a nest on the couch and eased myself into it. And there I'd camp all day, maybe even sleeping there at night, struggling to keep my eyes open during the Evening News.
Sick days. I loved them. The break from routine, the mandatory coziness, permission to do nothing but read all day.
The living room of my childhood was two walls of floor-to-ceiling, south-facing windows overlooking the apple orchard in the foreground and mountains in the background. Sunlight streamed through those windows all day long, ending in magnificent sunsets. As I lay back on the couch, the flickering reflections of the sun on the pool outside danced across the ceiling in watery, lazy apparitions. The room was book-ended with a hard-working wood stove that, in the fall, winter, and spring could raise the temperature in the room to a good 80 degrees if no one was looking. The front door opened into the living room, and from my nest on the couch I had a clear view through the kitchen all the way to the wall on the other side of the house, next to the bathroom. It was a good post for taking a break just outside the action of a five-person family. On the fringe with a good view.
Today, some 30 years later, my daughter is home sick from school. Some things have changed (what I would have given for Netflix streaming on my youthful sick days!) and some is the same: She made a nest of pillows and blankets on the couch, she has a steaming mug and toast beside her, she is happy and content to be inside the cocoon of our home today despite the illness (just a cold, thankfully).
Thinking back on my sick days, they are perhaps my fondest childhood memories, as strange as that sounds. I felt warm, secure, taken care of... And so now I want to protect my child's memories of these days, too. That's why when she is sick, I stop too. I used to get very stressed by her need for a sick day: how would I work my deadlines, conference calls, errands, dinner-making around this sudden change to my schedule? But now I realize how lucky I am for this imposed pause. I can make this day, this week (gulp!) about caring for her. She won't live here forever (despite what she may have told you); I won't always get to fuss over her. I want to savor these times. After all I can work around bringing her more tissues, making her something to eat, helping her find something to watch, tucking her in to bed, reading her a story, playing Checkers. All too soon she'll feel the pressure to ignore sickness -- to work through symptoms, to suck it up. For now I want to protect her ability to take a guilt-free sick day.
And in that way, I get a cozy break day, too.
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The afternoon before my father's memorial service I still hadn't written my speech.
I'd been thinking about it off and on all week, but I'd been busy with other things: lining up the other speakers, writing the programs, coordinating with the mortuary staff re flowers, food, audio / visual, room capacity -- in a lot of ways it felt similar to my conference producing work prior to my dad's diagnosis. And that was comforting. I slid the role on like a glove.
But by the afternoon of the day before the memorial service I knew I needed to find a quiet spot and put pen to paper. I have always loved going up on the roof at my parents' house. I loved how stark the roof was: shingles with a few pipes poking up, a brick chimney, and a TV antenna. The view out is breathtaking, and the tree tops are right there!
So I escaped to the roof. A beer in my cleavage, a pen in my teeth, a pad of paper under my arm as I scaled the ladder.
A few deep breaths, and then the words began to flow... The following is the speech I read the next afternoon to those assembled for my father's memorial.
The memories fade in and out now, like radio stations on a cross country road trip. Static gives way to clarity. Bits of song, a smell, a feeling, a memory of a laugh -- sharp, then fading... All of it out of context, and thus each beautiful in their distinctness.
...
It's 1994.
My parents are side-by-side on the couch across the blue shag carpet. I'm facing them, fired up. I'm upset over the death of our second elderly horse. First Missy, then Chewy. Now we have just Rosie: a beautiful white a copper-colored Arabian-Appaloosa mix. A lone horse. A horse without a herd. An old horse.
I'm 17. I'm awash in sorrow for her loss, imagining what it would be like to be the last one standing. I'm passionately suggesting we put this lonely -- though otherwise healthy -- horse out of her misery.
My mom looks from me to my dad beside her and says, "If I go first, watch out for April! She'll be coming for you with a shotgun!"
...
The memory fades to static...
A new memory comes into focus...
...
It's a couple weeks ago. My dad and I are at his kitchen table, eating scrambled eggs. He's thin, weak, tired. I'm telling him the horse story. I'm nervous it won't go over well.
When I get to the "watch out for April!" part, he nearly chokes on his eggs. Bits fly out of his mouth. His laugh is clear and beautiful.
...
The memory fades...
...
Now it is last week: the day I take him to the hospital. We are in his car. He's in the passenger seat, his eyes closed. Every turn, every bump, he moans. I'm desperate to help him. We are fairly flying down Black Road -- the hospital like gold at the end of the rainbow.
I'm thinking: God! Good thing his eyes are closed! He'd never approve of this speed!
Just then, out of the blue, his eyes still clamped shut, he says with a smirk, "I hope you're timing this."
...
The memory fades...
...
My grief is like these memories: in and out like the tide. My sadness comes in waves. Like a punch in the gut, the memories come unbidden. Everything reminds me of him. Grief washes over me. But the memories comfort me, too. I don't want to forget.
I'm so grateful we learned in these last six months to hug often. To say I Love You every single day. To lean on each other.
But there is one thing I never got the chance to tell him:
Fifteen minutes, Dad.
Fifteen minutes from your house to the hospital.
New. World. Record.
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George Herbert Johnson
November 15, 1952 – September 5, 2014
George Herbert Johnson, 61, passed away peacefully on Friday, September 5th, at Good Samaritan Hospital in San Jose, surrounded by his three children, April Johnson Stearns, Dale Johnson, and Kyle Johnson, and his two brothers, Milo Johnson and Craig Johnson.
It is a tremendous sadness and honor that I, April, now write his obituary. When my father was diagnosed with Stage IV Pancreatic Cancer this last spring, I was with him in the doctor's office. It was the worst day our family has ever faced, and yet even then my father acted with his customary grace and strength. After we left the doctor's office, we stood in the parking lot. I was stunned, struggling to keep it together. He pulled me to him in a big bear hug, comforting me when I should have been comforting him.
There is so much to say about my dad's last months, weeks, minutes, but I don't want his life to be summarized by the cancer. The truth is, his life was absolutely full. Bursting! This was a man who squeezed as many minutes as he could out of each day. When most of us barely roll of out bed with enough time to get to work, he was up doing work around the house before putting on his work clothes. When most of us were turning on the TV and relaxing at the end of the day, he was pulling his jeans on and heading outside to work on his farm until sunset, or even after. It was the land that he loved: being out in it, on it.
But I digress.
My father, George, was born on November 15th, 1952 in Binghamton, New York, and was the second of four sons of Milo and Evelyn Johnson, known locally as the couple behind the Peacock Tree Farm. Raised and educated first in New York and then in the Bay Area, George graduated from Los Gatos High School in 1970. It was here that he met his wife, Grete Hafstad. They married on a rainy afternoon, February 1st, 1976, in Los Gatos, and honeymooned in Lake Tahoe. Soon after they moved to what would become their life-long home on Skyline Blvd – a place they named with their matching initials: GHJ Tree Farm. I was their first child, and I was born in March 1977. In 1980 and 1983, respectively, their sons were born: Dale and Kyle.
It may come as a surprise to know he proudly obtained his Private Pilot's License in 1972!
George followed in his father's footsteps, working at IBM by day, and in the Christmas Trees on Skyline by evening and weekends. At Christmas, he took some of his trees to the Peacock Tree Farm to sell, and later opened his own choose-and-cut Christmas Tree Farm (GHJ Tree Farm), which he operated as late as last year. He also cultivated an orchard of apple trees, primarily (with some pears, nectarines, peaches, cherries, and persimmons thrown in, too). He was extremely proud of these apples, and sold and shared them generously over the years. Many knew him for his annual apple cider-making parties.
Soon after moving to Skyline, George joined the volunteer fire department, which he ultimately captained for 32 years. In 2007 he retired from his long career at IBM (first in the machine shop, then in procurement), and in 2010 he retired from the South Skyline Volunteer Fire Department, Company 21.
When I was growing up, if he wasn't at IBM, on a fire call, or in the orchard on a tractor or up a ladder, he was often found cycling with my mother, or doing any of the numerous activities of parenthood. He was the best dad to us kids that we could ever hope for. He was a true friend and mentor to us.
George is survived by his daughter April Stearns and her husband Joseph and George's granddaughter Nia of Santa Cruz, CA; his son Dale Johnson and his partner Amy Mecchi and George's granddaughter Ella of Coarsegold, CA; his son Kyle Johnson and his wife Whitney, and George's grandchild on the way of Coos Bay, OR. He is also survived by his brother Milo Johnson and his wife Jill of Palo Cedro, CA; and his brother Craig Johnson and his wife Ramona of Colorado Springs, CO. He is also survived by numerous nieces and nephews, aunts and cousins.
George was preceded in death by his wife Grete; his father Milo A. Johnson; his mother Evelyn Herbert Johnson; and his younger brother Jerome Johnson.
This Saturday we will gather to honor and remember the life of our father, brother, uncle, friend, mentor, neighbor, and grandfather, George. We'll come together to remember the life and times of this extraordinary man who touched so many with his kind, gentle spirit.
September 13, 2014; 12pm
Lima Family Mortuary
466 N. Winchester Blvd. (cross street Newhall)
Santa Clara, CA
In lieu of flowers, please consider a donation to the Pancreatic Cancer Action Network (www.pancan.org).
Picture credit: Long-time friend, companion firefighter, and hiking buddy, Arnie Wernick, took the portrait of George.
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Wow, you look really good!
People (well-meaning to be sure!) say this to my dad all the time. Later, we discuss this: What does it mean, exactly? What should a stage IV cancer patient look like? Should he be more bald? Even more thin, weak? Less dressed? Less up-right?
I'm frustrated & I'm here to rock the idea that what we look like on the outside says very much at all about what is going on on the inside. Especially when it comes to the sometimes long process of dying.
Twelve days ago, a nurse sat in my dad's living room. She was there because I'd called her.
A couple days earlier, when we went in for Round 9 of the chemo, the oncologist had said that George should take a break: he was weak, had lost a significant amount of weight, and was needing to lie down most of the day due to the pain in his abdomen -- all this was discussed while the patient perched on the edge of the exam table looking, for all intents and purposes, very much like he's always looked: tan, fit, a twinkle in eye. Sure, perhaps his eyes were a little more recessed, maybe his shoulders a little sharper under his t-shirt, but that same salt-and-pepper-ed, handsome guy with a quick smile. Is this what it looks like when the doctor says, Go home and rest. I have nothing for you right now. We'll talk in a couple weeks..?
We went home with mixed emotions. One the one hand, I was relieved for the break in chemo. It is hard to drive someone who is feeling horrible to a place that will fill his body with poison, knowing that even if it is affecting the cancer, it is also going to leave him weaker and sicker. What's the return on investment? On the drive down the hill, we might chat and laugh. Maybe a little more of that at the beginning of the infusions as we settle in, but by the end, he'd be laid back with his eyes closed. "Afraid to move," he'd say. I'd then drive him home silently, avoiding any potholes, trying to get up Black Road both as quickly as possible, and with as little carsickness as possible on the hairpin turns.
But -- did this mean our options for treatment were dwindling? If so, how did we feel about that?
When I brought up the notion of Hospice care I may as well have shouted a four letter word. He was stunned. He resisted. "I'm not there yet," he said. I pushed, as gently but as persistently as I could. I wanted support, information. I needed something more than I'd received from the oncologist, or the once-a-month support groups at Stanford Hospital. I needed to know where on the map of stage IV cancer we are. I needed to know that when I told someone he was in pain, that they would listen. And when I said, "He's not eating!" someone would be there to say gently, "I hear you. I know. It sucks, but this is part of the process."
I found that with Hospice. I know it was scary for my dad the day the nurse sat in the living room that first time. We talked about death and dying. We talked about treatment options possibly dwindling. We talked about how hard this is on us, the survivors. We talked about final wishes.
It was hard, but it was also a lifeline. Finally we were discussing what was happening right in front of us!
And that very night, a pharmacy delivery driver showed up in the driveway at 8pm with a bag of medicines. A "comfort kit," they called it. Some medicines we just store for down the road, but others were to be taken right away: something for pain, something for appetite stimulation, something for constipation. All these things I'd been anguishing over and trying to get help from the oncologist, and finally someone had not only heard our concerns, but had responded that very day!
So, we are now in the Hospice chapter of this journey. It may be temporary (we'll evaluate treatment options again next week), or it may be permanent. I don't think my dad is dying this week or next. But I know that as long as he is on Hospice, we'll have compassionate care along the way, no matter how short or long the road is. I'm glad we didn't wait till his final days to get this kind of support, for him or for my brothers and me.
...
I've thought a lot lately about how similar dying and childbirth are. It fits, right? That entering and exiting this place might be symbiotic? In so many ways I feel like I'm serving as my dad's doula: I'm here to hold space, provide comfort and information, to do light housekeeping and cooking, to make sure the dog is cared for, and that the family knows what's going on. I can't take away the pain, but I can hold his hand -- or simply be in the house, bearing witness. I can hopefully be the difference between pain and suffering...
And all of this is building toward a day when the pain is no more.
Is this what a Hospice patient looks like?? Taken 8/19/14
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