Blood Sisters - Amy D. Rubin
In loving memory of Susan Blalock, 1957-2020
Prologue
Ladybird, ladybird fly away home, Your house is on fire,Your children shall burn!
From Tommy Thumb’s Pretty Song Book, England, 1744
February 10, 2011–Lake Forest Park, Washington
It all started with a fire. It began in Mom’s bedroom when the electric heater shorted out and burst into flames just inches away from her bed and her ninety-four-year-old head of fine white hair. She awoke with a start, sat up, and with the help of her walker dragged herself to the top of the stairs that led down to my studio. Then she began to scream out my name.
I was downstairs practicing Debussy at the piano, oblivious to the rest of the world, lost in musical reverie. Mom was certain I would die if her calls did not reach me, but she was not one to panic. Finally I heard her voice, hoarse from shouting above the music. As I raced upstairs, a series of bomb-like explosions circled me as one by one windows shattered and fragments of glass flew through the air. I was dazed, paralyzed, transfixed by this grotesque spectacle as seen from the perspective of a front row seat. I watched the beige curtains shrivel and turn first orange and then black as flames engulfed and swallowed them.
Mom snapped, “We have to get out now,” awakening me from my trance. I grabbed my phone in one hand and with the other took her arm. “Hurry,” she said. Together we escaped into a
downpour. Mom closed the front door firmly behind her to contain the fire. She didn’t have time to find her shoes so with only thin socks to protect her fragile feet she followed me up our muddy hill to safety.
A few weeks later, I began to experience intense jolts that felt like electric shocks, first in my fingers, then arms, then torso. Drying my back with a towel felt like someone cutting into my skin with an electric saw. I heard myself whimper. Not only was the searing pain horrific, my worry about what was causing it was even worse. I was certain I would soon die, as only something serious could cause these symptoms, which initially were sporadic but now attacked me all the time. My anxiety was barely manageable as I thought, This is what a nervous breakdown must feel like. Still, I did my best to be the caretaker of our household, working long days with teams of movers, inspectors, and firemen to clear the ash and fumes that were left behind. Ninety-five percent of everything Mom owned had burned. I had to buy her underwear, tops, bottoms, nightgowns, robes, jackets, shoes, gloves, and cosmetics. And our insurance policy required that we estimate a price for each item destroyed before we were permitted to replace it.
“Mom, I’m going shopping. Tell me what you need the most.”“Curlers,” she mumbled.Mom wept during our meeting with the adjuster. “How can I put a value on Amy’s baby
shoes?” I didn’t even know she had saved them for fifty-nine years with her valuables. I had always thought of Mom as strong and stoical but now as I watched her unravel, I found myself feeling powerless and angry, especially when she said she was ready for her life to end.
In the months that followed, both my mother and I would be diagnosed with cancer, hers breast, mine blood. Looking back, I would feel like there was the time before and then the time after the fire. The fireman had extinguished the initial raging blaze in a matter of minutes, but my memories and fears from that day on would smolder like embers for years to come.
Blood 1
February 11, 2011–Comfort Inn, Aurora Avenue. Seattle, Washington
The room is stuffy and the walls thin. The TV next door transmits a low murmur. Periodically a laugh track erupts. I am tempted to knock softly on the wall in protest, but am distracted by a strange burning that has begun in my fingertips. Something somewhere is wrong.
Too many platelets may cause blood clots or strokes in those with counts over 1,000,000 or in those over the age of 60 with elevated counts. ET (essential thrombocytosis), is the name of this rare condition that in approximately 3% of cases will convert into a leukemia that is quick moving and frequently fatal. Related cancers, such as PV (polycythemia vera) and MF (myelofibrosis) are MPNs (myeloproliferative disorders), which affect white blood cells, red blood cells and platelets. In most cases, genetic mutations such as the Jak 2 are determined to be the cause.
The steering wheel is searing hot and its heat seems to flow into the palms of my hands, especially along the life lines. I wonder if the chill of a cold soda can might cool the sensations enough so that I can continue the long drive to the Peninsula. But I can barely grasp the can. Just the contact of it against my fingertips is excruciating.
Standard recommended medications for MPNs include HU (Hydroxyurea), as the first drug of choice. Possible side effects may include leg ulcers, hair loss, violent headaches, and nausea. Some scientists believe that taking HU may cause ET to convert to leukemia over time. Still, it remains the first line drug of choice for treatment.
Sensations like shooting stars begin across my torso. Red dots decorate my thighs which were once a pure and an uncompromised white. My body has been taken over by some mysterious force; my body has become a strange canvas. Who is the painter?
Blood 2
May 24, 2011–Swedish Hospital. Seattle, Washington (as if in a dream)
They send you back to Dr. X to confirm the details of your blood draw. Should they check for the Jak 2 mutation again? The nurses and support staff occupy different workstations. Back here is their private world where they joke about too much garlic in the pho they brought in for lunch.
Dr. X moves easily among them, responding with signatures, explanations, and referrals. The phone rings constantly as he slips in and out of his office managing a seemingly endless flow of details and demands. You notice the photographs of wildlife that cover most of the back room wall. One closeup is of a grizzly, most likely from Alaska, holding a giant salmon between a set of large gleaming teeth. This hospital art is an interesting partner to the large tank of tropical fish in the waiting room. What is this fish theme all about? you wonder.
Then you see the elegant lady you had noticed when you checked in—the one who had been sitting right next to the tropical fish. She can’t be sick. She is too pretty and her mauve
handbag matches her perfectly tailored and one-of-a-kind mauve scarf and pantsuit, all too elegant for a waiting room, all too festive for a visit to an oncologist.
But now she is back here with the medical staff huddled, almost squeezed, into a vacant corner with Dr. X. You hear her voice, which is as smooth as her wardrobe, nothing out of place, but words are not what you should be hearing. You did not choose to be standing here as their witness.
“I’ll travel anywhere for any drug. Please. There must be something else I can try.” She says this with a tone devoid of emotion. You wonder what prep school she attended, probably one of the best on the East Coast where they teach you never to show weakness and to always appear perfectly groomed and grammatically correct even when you are dying.
She tries again a number of times with different words filling in for those she first spoke. You wonder which cost more, her scarf or her handbag or a dose of medication? Dr. X shakes his head emphatically, and you hear him say, “No. There is nothing, nothing more we can do.”
They stand just a few feet away from you but they appear not to notice you and because of this you are forced into a kind of hospital voyeurism. You hope he’ll get to the part where he says he is sorry, or maybe he spoke too quickly and in fact there is somewhere she can travel to get that pill that might add at least some days on to her life while they look for other pills, but that part of the conversation never comes. You hope he will at least give her a hug, but no; instead he turns away. He has many other patients who are waiting for him and at least there is a chance that they can be helped. Your heart is beating fast. Your heart is breaking.
This could be you.
Blood 3
Jan 2013–Westlake Avenue. Seattle, Washington
The parking lot in back the of Azteca restaurant has very few cars and is littered with cigarette butts, empty bottles of cheap gin and a few condoms. It’s 11 a.m. and really too early for lunch.
I’ve driven down to Westlake in the grey drizzle for the meeting of the Seattle Myeloproliferative Neoplasms (MPNs) Cancer Support group. I was diagnosed for ET close to two years ago and hope to find others who might become a source of support and comfort. This is my second time attending and truthfully, I would rather be drinking the preparation for a colonoscopy. Whose brilliant idea was it to mix a discussion about doctors, drugs, and deaths with pungent smells of tacos, a garish decor of saints and skeletons screaming with bright colors, and a soundtrack of syrupy mariachi music?
An old silver Toyota pulls in slowly on the other side of the parking lot. A woman with long greying hair turns off the ignition and sits as if waiting for something. I’m pretty sure she has come for the meeting, and like me is hoping that someone or something will give her an alternative to going inside. I have the instant feeling of liking her, which is strange given how much I am not liking anything or anyone these days.
In my mind, I review the cast of characters I will be seeing again. Jane has ET like me, and joined CrossFit to get pumped and super healthy. She hardly opens her mouth other than to eat surprisingly large portions of protein. Her husband, Fred, sits next to her and answers all the questions that come her way so she can chew without distraction. Paul is red-faced, either from the elevated red cells of PV or his anger about the motherfucking doctors who aren’t doing their
jobs of controlling his hematocrit. I wonder if the disease has made him explosive or if he was born this way.
Two people, Jake and Marge, have MF, the disease where you’re not dead yet but you’re potentially on your way to leukemia. She’s thin and he in turn is bulky. They both are contemplating the excruciatingly frightening future of a bone marrow transplant to keep them alive, and given their conditions, each looks surprisingly strong.
Back in the parking lot, the lady with the greying hair and I cautiously exit our vehicles and sneak into the ladies room, hoping that no one in the group has spotted us. We wash our hands in adjacent sinks as our eyes connect in the mirrors.
“Are you here for the support meeting?”
“Yup,” she answers and we sigh in synchronicity. “I literally forced myself to come,” she continues.
“Me too. Hey, want to catch a movie instead?” I ask. We laugh, and in that moment I sense that I may have found an ally. I sure could use one.
Blood 4
February 2013-August 2017—Seattle and Hansville, Washington and other places
My new friend is Susan, Sooze for short. We are Mutt and Jeff, her larger-boned, tall frame compared to my elf-like size, two women joined together in circumstance and coincidence. She went to college at Oberlin with my former partner, and like me, spent numerous summers hiking in Zermatt, Switzerland. She lived in New Haven where her dad was a professor and I was a grad student at Yale, and we both went to a summer camp for lefties. Her camp was
Lincoln Farm and mine was Thoreau; we competed in softball many times a season, and it’s even possible that at different times we hit and caught the same ball. We have the same dishes, the same books, love the same films, embrace the connections between art and community, don’t wear makeup, laugh hard and loud, work hard, are fascinated by anthropology, can be very silly, and care about helping people who can’t help themselves. We each own one pair of high heels, many backpacks and a few expensive leather pocketbooks given to us by our mothers, which we have never used. We live as members of a minority population, one in every 300,000 who have ET, a rare blood cancer.
I try to push away my diagnosis by giving concerts and lectures and by traveling internationally. She, on the other hand, lives in a beach house, focuses on growing organic vegetables, reading endless articles on health, removing stress and finding all the ways to study, understand, and deal with our disease. Reading statistics about the mortality of people with our cancer terrifies me. But she reads everything possible and makes frequent trips to specialists at the Mayo Clinic.
I discover over time that Sooze is a woman of many talents. She is a founding member of the Suquamish Museum in Poulsbo, Washington, a documentary filmmaker, oral historian, fundraiser, and medical researcher; she even rescued a historic property in Edmonds, Washington to convert it into a community arts center. She is a generous idealist whose energy and heart know no bounds.
Over the next few years, we become blood sisters who go to each other’s appointments, edit each other’s letters to doctors, research our cancer, and share our fears and frustrations on a daily basis. We also rage about the perils of taking care of ourselves, as doctors do not agree
about optimal treatment or disease progression. We become family members who join each other’s households and pass endless hours sitting around the dining room table to talk about relationships, unhealed emotional wounds, stress of family, romance, first dates, sex, afterlife, and everything under the sun. She is happily married to Al, a handsome, energetic school teacher, and I am single and reluctantly looking. She even helps with my online dating profile and, as my cheerleader, assures me that my perfect match awaits me in the not-too-distant future. Summer comes and I hike alone in remote grizzly-filled areas of the Tetons. She insists that I check in with her by phone each morning and evening so that she can track my safety. She in turn goes to the Mayo Clinic for more testing as her blood work and symptoms are worsening over time. Sooze’s father was a famous statistician and she too has learned to analyze data. Even though her specialist doesn’t appear to be alarmed, Sooze has been making graphs of her blood counts and, based on her declining numbers, she is certain that she is progressing to myelofibrosis, which can be deadly. She texts me daily, and one evening I am photographing a magnificent sunset when she calls and tells me important news. She will soon need a bone marrow transplant to save her life.
Blood 5
2015-2019—All over the world
I am determined not to be victimized by cancer but to live a “big life” despite it. My position of Enrichment Lecturer, where I present interactive lecture performances on cruises, takes me around the world.
Sooze and I correspond on a regular basis and I feel like my trips are for both of us, kind of like a pregnant woman who eats for two. I hope that sharing my travelogues will provide her with vicarious pleasure as she awaits and then undergoes her transplant.
Dear Sooze,Wow. Fiji is wonderful beyond my wildest dreams! Today, I kayaked to a remote village, and was introduced to a local chief in search of a new wife. After we drank some kava (please see accompanying photos of me stoned), he suggested we marry. He didn’t speak English, was not really my type, and I certainly didn’t feel comfortable telling him about my many girlfriends, so I had to answer with a polite “maybe.”
And a few days ago I was snorkeling alone, in open water, as the others on the boat were all diving. Within my first five minutes, three large reef sharks approached me. I was terrified, and moved slowly away from them yelling up to the boat’s captain, “Sharks!” He answered, “You are lucky!” Then I swam in the opposite direction and encountered three other sharks, also large. Apparently it’s the season for sharks to give birth. Who knew? I shouted some expletives as I swam back to the boat and climbed out of the water. He smiled and laughed, “Today, you are really, really lucky! Relax.”
A day later we had a few new arrivals at our resort. I introduced myself, “Hi I’m Amy and they interrupted, “Oh! You’re the Amy we’ve heard about. You’re the woman who swims with sharks.”
Blood 6
2015-2019—Seattle, Washington
Doctor’s Notes:“Miss Rubin asked a litany of questions which made the exam go over time. I am
recommending that she see a psychiatrist to find a way to minimize her overreactions to pain which she describes in such an inflated matter as to indicate an hysterical reaction.”
“Ms. Blalock does not seem comfortable with my response to her inquiries. She insists on doing her own research, creating her own statistical analysis, and seeking out the opinions of other medical professionals which only confuses her further.”
So not only are Sooze and I sick; we are also apparently downright annoying.
For my birthday, Sooze bought me a book called “Forest Bathing,” which explores the Japanese practice of shinrin-yoku or “taking in the forest.”
“Is it time?”“What time?”“Time to stop being silent?”“Let me check. We’ve only been walking in silence for six minutes and thirty-two
seconds.” “So?”
“I’m not sure we’ll get the full benefits unless we try to go for longer.” “Okay”.“Sooze?”“Amy?”
“I’m getting a little tired.”“Tired of walking?”“Of course not. Tired of not talking. I don’t mind being silent when I’m in the forest
alone but when I’m walking with you, there’s always so much to say”.
Blood 7
November 5, 2019—Seattle, Washington
We sit in the exam room waiting for Dr. C. Sooze wears a protective white mask which covers her face. Her eyes are closed because of their painful burning and her breathing is ragged. She has almost no neutrophils, blood cells that protect us from infection. Most people have 5,000 and she has only eighteen, which qualifies her for the diagnosis of AML (acute myeloid leukemia). Someone else would be dead by now given her failed transplant, her multiple back fractures caused by the meds, and the fact that her bone marrow has been the battlefield of rapidly advancing cancer cells for the last ten years. She has tried every treatment available and continues to do hours of research a day to find a new answer to slow her disease progression. Every time the cancer reappears, it is stronger and moves faster to ravish the healthy cells in her body. Like a shark in a feeding frenzy, it is unstoppable.
I am trying to support her in her last stage of this disease. When I helped her into my car this morning, she whispered “I am very sick. I am nothing like the person I was before. I’ll never be that person again.”
I say in a quiet voice, “I know.” There is no place for me to be her cheerleader anymore or to brainstorm with her about treatments we haven’t tried that wouldn’t save her but might keep her alive for a few more months.
The doctor looks at Sooze’s last health report and then takes a moment to compose herself. She rolls her stool back. Is she distancing herself from us? We wait to hear her words resonate in the small room where the sterile exam table is juxtaposed with batiks of exotic ladies dancing. There is no dancing for Sooze, me, or the doctor. We are past the part of the meeting that began with a joke or two and Dr. C’s strangely inappropriate sharing about her former and current relationships. Really? Sooze and I normally rehash all the details of medical meetings and laugh ourselves silly about how crazy and dysfunctional our medical protectors are. But now is the time to focus on the elephant in the room.
Dr. C’s voice is very quiet, almost like a solo flute playing a haunting melody in its lowest register. It is fragile but powerful at the same time.
“So,” she takes a long breath to say what she has most likely said hundreds of times before, “Modern science and medicine have done all they can for you and your disease. We have nothing left to offer you. We have no more options.” Her words are said very slowly and are not apologetic, just factual. “Yes, there could be a miracle and we always look to find hope but maybe we should be focusing now on your quality of life for the time you do have left. Perhaps it’s time to consider hospice.”
Sooze has asked me to take notes at this meeting. Jesus. Am I supposed to be writing this down? I can’t read Sooze’s reaction because of the mask she’s wearing, but I do notice that her
shoulders are slumped more than when we began the appointment. I clench my teeth and squeeze my pen to pull myself together.
I pretend I am a court stenographer recording the information quickly, efficiently, and without hesitation. At the same time, I hope Dr. C doesn’t say much more. I hope she just shuts up. Sure, she’s doing her job, but I don’t want to hear it.
In January 2012, Dr. C had diagnosed my mother with breast cancer. I asked how much time we would have if we did nothing. “Six to nine months,” she said in that quiet flutey voice. I begged my mother to fight for survival but, after struggling with three different kinds of chemo, my mom gave up and died four months later. I was actually angry at Mom for not living long enough to celebrate my 60th birthday, instead leaving me behind as an orphan with no family.
I wonder if losing Sooze will be just as terrible. Maybe if I focus on the simple tasks of making sure she is warm and nourished, maybe if I listen and protect her, maybe if I drive her to appointments, I will be able to avoid noticing how her face twitches in and out of a grimace as each breath causes her to wince. Her fingers have become spindly and her hands clutch each other to keep them from shaking. It is hard to believe that the woman sitting in front of me is not eighty but only sixty-three years old.
My friends call me “the fixer,” but there is no fixing this.Dr. C continues talking but I have stopped listening.Somewhere in the back of my mind, buried as deeply as a dog’s favorite bone, is the
knowledge that I too have this disease, but I hold a different hand of cards. Mine are not yet a death sentence but more a wait-and-see roller coaster where the doctor is a master of ceremonies standing in the middle of the stage opening an envelope and reading the message inside to reveal
my prognosis. Now she bends towards the microphone and makes her announcement as I hold my breath.
Blood 8
November 29, 2019—Edmonds, Washington
Al is running back and forth, wiping surfaces with cleansers and counting out Sooze’s endless pile of pills. He also bakes three kinds of fruit pies, and the smell of burnt sugar wafts in waves from the kitchen into the dining room. Sooze is sitting at the table with her son, his wife, her sister, and me. She can barely eat because her enlarged spleen, caused by the disease, is pushing against her other organs. Al hopes that even a few bites taken periodically will help restore some of the fifty pounds the disease has stolen from her. Does he really believe this?
I enter cautiously as I am not quite an invited guest. I asked permission to come over and I don’t want my first introduction to a few of the most important people in her life to be after she passes.
Andy is taller than his father, muscular and, as the younger set say, “ripped.” He has enormous energy that cannot be contained. He does endless pushups against the corner walls, and flexing exercises against the table. I wonder if this is his response to seeing his mother in a wheelchair. Is he doing all the movement her body can’t?
Al has been baking for hours. He brings out quiches and the different pies on steaming platters. We are all smiling but we know that this will be Sooze’s last Thanksgiving holiday. The talk turns to family memories. It’s a game of “Can you top that,” or “What could be scarier or more horrible than what I am about to share?” The winner gets more to eat.
Sooze begins, “Remember when Dad took out the inflatable kayak on the Adriatic Sea? He was whistling and enjoying the waves.”
Her sister chimes in, “Yeah and he didn’t hear the twenty people yelling at him to get the hell out of the water.”
The sisters continue, “Remember that couple on the balcony who were pointing at him and screaming words we couldn’t understand?”
“Yeah, they were saying something that sounded like “big fish” and we laughed thinking that’s what Dad looked like to them—a big fish.”
“Well yeah; he was a big fish in his field.”
“They didn’t know that.” Laughter.... “And then we saw the fin popping out of the water. We were hysterical, ‘Shark, Dad, there is a shark following you,’ we yelled, “but there was no reaching him. He was in his perfectly happy place, whistling and doing exactly what he wanted to be doing. It was only after he paddled to the dock that he realized Jaws was right next to him and had been chasing him for who knows how long.”
Uproarious laughter which Andy joins in on. He actually stops exercising to laugh.
“And then there was the time when Uncle Harry Boner needed an ambulance but the problem was that in North Carolina they say Harry as if it were spelled “hairy.” One of his kids called 911 and said, ‘Harry Boner needs help. Yes, ma’am I did say that Harry Boner needs help. Ma’am ... ma’am? Is anybody there?’ The operator just kept hanging up on them.”
More wild laughter. Sooze is the loudest and she stops playing with her quiche to add her bit. “What about our crazy cousins?”
Now her sister seems to really come to life, “You don’t know the half of it. Wait, wait,” the women talk over each other, breathlessly, each competing to tell their memories of horror.
“Remember—they had guns. They actually brought them to the dinner table, took them out of their holsters, and placed them right out in plain sight next to their napkins. Oh my God! We couldn’t believe it! And remember, our Uncle Harry wanted to give one to Al to take home; I think it was a rifle, but Al replied, “How am I gonna get this onto the plane?”
More laughter. I give in to temptation and join the game even though I promised myself I’d keep a low profile. I tell them about the killer snakes I faced in Ghana: the hypnotic mambou seducing me with its translucent green color, and the cobra that we thought was a garden hose— that is, before it suddenly moved. Sounds now from all of us, part laughter, part screaming, like that crazy mix of feelings you get on a roller coaster whether you’re a kid or an adult. What could be more terrifying than stories about death? Stories about almost dying, I guess.
I go into the kitchen to wash my hands again. You can’t be too careful around Sooze since she has basically no immune system. “Anyone need anything from in here?” They can’t even hear me as they are reliving yet another hair-raising tale.
I look out the window and imagine the boys when they were little, watching Al fry bacon and flip pancakes on Sunday mornings. He would stack plates still thick with maple syrup to be washed later, so they could run outside and jump on their sleds, screaming happily as they flew down the snowy hills that surrounded their house. Sooze adores her boys and her husband; that’s totally clear.
It’s very sweet but equally terrible to be here in this house, all of us together. We know that very soon she will leave us behind. We will eat pies, wash dishes, comment about the crappy weather, listen to NPR, and rage about the news, without her.
Blood 9
January 1, 2020—Seattle, Washington
I call the hospital to see if she is still alive. I don’t know what day it is. I’m in a panic. I’m losing my lifeline.
Sooze called me a week ago and I didn’t hear the ring because I was practicing piano in my studio. Fuck the ironic timing of the universe. I barely practice these days because I spend most of my time worrying if this is the day she will die. What I wouldn’t give for the chance to have had our last conversation, but no, I was busy with a task that could easily have been interrupted for something as important as our final exchange of words. The Amy-Sooze endless dialogues. And now it might be too late.
I listened to the long message she left letting me know that she was in the hospital, that her spleen was failing, and that aside from being in awful pain, which now was being managed, she was sleeping most of the time. She sounded soft and tentative, like a shy young child. She explained that she wouldn’t be seeing or talking to anyone other than her family members, and that the Caring Bridge would be the best source of information about her condition. Some of her words ran together and she didn’t seem to have enough air to finish her sentences. She said that she was very busy and laughed in her idiosyncratic way as if to say, “Can you believe all this is happening?”
I had been hoping to hear more from her all week long, but now I finally break down and call Al, Sooze’s husband, praying that he’ll answer. He does and tells me that she is back in the hospital sleeping, and that things are moving quickly in a bad direction. He says that when she wakes up, he’ll call my number from her phone and put her on.
Blood 10
January 1, 2020 (a few minutes later)—Seattle, Washington
S: “Hi, is this an okay time to talk?” I’m so relieved to hear her voice, which sounds stronger than I had expected. “We’re waiting to hear if there is any hope. I’ll keep trying if there is. But, I don’t want this to be the new way of life. I’m ready to go at any time. I feel calm inside. I got done what needed to get done. Ordering the books for the grandson I’ll never meet, and writing cards to the boys. We completed the Death with Dignity paperwork. I don’t want to continue if this is how it will be.” Pause. “How are you doing?”A: “Good, really pretty good.”S: “Really?” (said like “Should I believe you?” or “Finally you’re pulling it together and it’s really, really, really taken you a while.”)
A: “I’m spending time with Kate and it’s going well. I feel close to her.”S: “Good.”A: “And I feel like I’ve been learning a lot about my stuff, my triggers and vulnerabilities. I’m making progress.”S: “You’re really entering the vortex of dating.” I think, Wow, vortex. What a complicated word to be saying on your deathbed.
A: “And I’ve been thinking about you and missing you. Missing all the stuff we’ve done together. Do you remember our forest bathing exercise where we were supposed to move through the forest in silence? We pretty much failed because we could only keep quiet for about six minutes.”
S: “Yeah. We had many, many adventures.” Now she sounds very tired. Pause.A: “I love you lots, you know.”S: “I love you too—pause—sometimes there’s no more to say.”
A: “Can I come and see you?”S: “I’d like to see you but things change every day. Call first.”A: “Okay, I’ll do that.” I was surprised at how clearly she was speaking, how clearly she was thinking.
The next day I decide I should go to the hospital without delay. I pack a book to read in case she’s asleep and text Al, “Is it okay for me to come now? Sooze said she wanted to see me.” I wait a while for him to get back to me, and finally the phone rings.
Al says, “I got your text and was going to respond, but what I have to say should not be texted. Sooze passed away this morning.”
Epilogue
January 2, 2020—Seattle, Washington
I’m sitting at home, alone in front of the fireplace, not quite capable of acknowledging a world without my anchor, Sooze. I think back to Spring 2015 when my disease advanced. In
addition to having too many platelets, I learned I also had too many red blood cells, and the revised diagnosis of a cancer called PV. I visited Sooze at her beach house, trying to process this upsetting news. In addition to her many other talents, Sooze was a Reiki master. She gave me a healing session followed by a present of sacred stones and, finally, a worry doll to keep me safe. The next day it rained, so we browsed on Bainbridge Island, where I purchased a small blue glass candle holder in the shape of a sailboat. It reminded me of our many walks and talks along the coastline in front of her house, where we dipped our toes in the water and flirted with the waves. I knew when I bought it that my precious little boat would keep me company in the days to come.
Now, five years later, I hold the worry doll against my heart.
I find myself rocking back and forth and chanting the little bits of Hebrew I know. It’s likely that I’m saying the prayer for the bread, not the prayer for the dead, but really, I just don’t care.
I find the precious stones she gave me and a card with the words, “You’ve been Forest Bathing for many years and may not have known it. But your wisdom is evident! You give me inspiration all the time. Your loving soul mate, Sooze.”
It hurts too much this long dance of losing you. Deep in my gut I am already keening.
She was one of the few people who saw me. I loved to tell her stories about my adventures. When I became frightened about my disease she would say, “Just remember, you’re the woman who swims with sharks.”
I make an altar in my living room by placing the stones, photos of us, books she had given me, and the worry doll in a semicircle, in the shape of a hug.
I recall something Sooze said many times in these past years. “You know, Amy, the disease is terrible but without it, we would have never met each other.”
The leaves have all fallen.The season of forest bathing has passed,and despite my pleas I cannot freeze time or even slow its pace.
I thank my stars for the privilege and the joy of having known her.
I have walked on this path before and stopped to hug each tree,praying “Hold me with your branches and protect me now that she is gone.”
I place the blue sailboat candle holder at the center of the remembrances. As I light its candle wick, I watch the flame flicker and imagine the voyage that the little boat has ahead of it, moving from now to wherever there is beyond this world.
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