I schedule an Academy Award party with a walk-in red carpet and silly jackets and jewels and a backdrop that makes us look like we’re at a paparazzi-crazed event. I have our hair stylist, Jen, wash and blow out Carolyn’s wig. Carolyn has a great time with friends, drinking rose and watching the awards. Her dynamic personality, still evident, makes it feel like Christmas. Tomorrow the doctor is upping Carolyn’s chemo dose two times and a quarter.
Tomorrow her year long protocol begins. Carolyn and I decide we will not feel bad about this until she really does FEEL BAD. Find your inner “Sisu.” Stay in the moment, I think to myself… B-O-U-N-C-E, B-O-U-N-C-E is my meditation. I repeat it in my head, slowly, one letter at a time. My ability to spell it again and again is strangely comforting.
Chapter 18, Minneapolis, 1985
HUBBA HUBBA ZOOT ZOOT
To escape life, when we are teenagers, Carolyn and I listen to music in our bedrooms. Carolyn’s favorite band is The Cure, and they are scheduled to play at the Orpheum Theater in downtown Minneapolis. It’s late October, but luckily, there is no snow on the ground, and Dad lets Carolyn drive a bunch of us in his Oldsmobile. I can’t believe Carolyn is including me in her friend circle. She is a junior in high school and I am only in junior high. I know all of The Cure songs, but only because Carolyn plays them nonstop on the record player in her room. The show opens with The Baby Scream from the Head on the Door Album, but Carolyn and I love the songs best on the album Boys Don’t Cry. The encores at the end of the concert are loaded with these songs, and we all loudly belt them out from the pit. I can’t wait to go to concerts with my friends, to drive, to feel as grown-up and free as I do this night with Carolyn.
Music is a huge part of Carolyn’s life. One of her closest friends, Mike, plays at our junior high dance with his band. He sings a song about a boy I know called Zinjanthropus Head and a love song for my best friend’s sister called An Ounce of You. Carolyn drives me to the dance and hangs out with Mike and the band. Carolyn’s albums are sacred. I am not allowed to touch them unless she is in her bedroom: Elvis Costello, The Clash, Bob Mould, New Order, and Modern English, to name a few. It was the highlight of my tween years to be invited into her room to listen to her albums. Upstairs at Eric’s by Yaz is the ultimate healer when a boy in my class finds me invisible. In college, Carolyn meets a boy named Jason, whom she dates for many years. Jason is dark-blonde with shoulder length hair and artsy glasses. He walks up to Carolyn at a party and asks, “Do you smoke?” “No,” she answers. “Are you in a sorority?” “No. Not my thing,” she says adamantly. “I own an art gallery downtown.”
Carolyn and a friend, Kim Montgomery, open their first fine art gallery in downtown Minneapolis when Carolyn is nineteen. Having interned for a year at an established gallery, she and Kim, who is older with much more sales experience, decide they have a new vision for selling art. Kim is a beautifully put together, talented art connoisseur. Carolyn is an angel-faced Scandinavian spitfire. Together, Carolyn and Kim develop an impressive collector base in our hometown.
Jason works at First Avenue, a concert venue and club made famous by Prince in the movie Purple Rain. Jason helps me get my first fake ID. He introduces me to music I wouldn’t have otherwise known, like Trip Shakespeare, a local band. A musician on the side, Jason often plays with his band in Los Angeles, where I live after college. Once, Carolyn asks him to write a song for me. It’s called My Girlfriend’s Little Sister.
The music scene in Minneapolis is one of the best things about our hometown. It’s the home of Prince and famous record producers Terry Lewis and Jimmy Jam. My first boyfriend, Bruce, loves to listen to Janet Jackson and often prank calls my sister asking for, “Miss Glasoe if you’re nasty.” Wall posters are huge and trendy and Carolyn has an enormous Clash - London Calling poster in her bedroom. The word London is pink and the word Calling is green. There is a black and white photo of a man in the center, bent over and holding an upside-down guitar. It’s cool and edgy. Our mother hates it. I beg Carolyn to drive me to OarFolkjokeopus, a record store uptown, so I can buy a cool poster too.
Carolyn wants me to have a “make-over.” She buys me a pair of Doc Martens like hers and convinces my mom to buy me the newest Guess jeans. They are army green with tight tapering around the ankles. Carolyn gives me a white buttoned-up blouse to wear with them, collar up. At the hair salon, Carolyn tells our hairdresser to cut my hair like hers -long bangs but short on the sides and back. I spray Sun In in my hair to make my bangs more blonde. Carolyn says emphatically, “Lila, you look good!”
Poem -What Tough Is- (a recipe for laughter and shenanigans)
Take one large school bus, sift it weekdays through southwest Minneapolis in the early 1980’s. Add a handful of young Cavanaughs, a pair of Kellys, a trio of Winjes, a smattering of Overbys and a generous helping of Mattison. Mix well and let simmer.
If you can handle it, and want some more regional spices, throw in a couple Glasoe Girls from near Diamond Lake/Pearl Park. Toss in some large string instruments too just in case the driver’s radio breaks and we can’t hear “Hubba Hubba Zoot Zoot” on WLOL-FM.
Shake and stir for about a 45 minute ride and head for a college preparatory school situated in a Valley that is Golden.
Carolyn, You were the girl on the bus who could stand up to the fellas. And I remember how tough you were then. Many times you were outnumbered by us dorky, teenage boys – but it didn’t seem to matter. You knew how to humiliate, embarrass, insult, laugh, joke and tease better than all of us combined! Your energy and tenacity made the rides that much more enjoyable and certainly memorable. Today we are all bus buddies again just waiting for you to get back on the bus. Carolyn, show us what tough is!
-Kaj Winje, Childhood friend, 2015
Chapter 19, Ojai, 2015
ROAD 31
Spring has sprung, and Carolyn continues to tough it out with her cancer treatments. Her friends, Larka and Jenn, travel to Ojai. Our friends, Lenore and Ross, visit from Canada. Carolyn is enjoying the warmer weather and often asks to go walking on the beach in Santa Barbara. Growing up in the Midwest, so far from the ocean, makes the beach endlessly enchanting. When Ojai is hot, we head to the beach. Carolyn and I love to sit in beach chairs, watching the water. The sound of the waves hitting the shore is calming…“swooosh, swooosh.” Sometimes her friends, Carl, Freddie, and John, meet us in Santa Barbara. They like to talk about art and about the east coast. They are all west coasters now but met when Carolyn owned an art gallery in the Chelsea area of New York City. Carolyn loves to eat Mexican Food at Cava, not too far from her favorite Butterfly Beach, before returning to Ojai. Her friends love to order her margaritas, which she never refuses. At one doctor’s appointment I ask her neurologist, Dr. Rudnick, if liquor and wine are okay. “Yes,” he says. “And it should be top shelf.” I wonder if he knows something we don’t know. Carolyn and I often talk about this because he is always positive, even when looking at x-rays that look worrisome. I realize these are not average doctors. They are still learning about this rare disease as well. They provide hope for their patients while they try to fully figure out invisible answers. Carolyn often asks me to send pictures of her recent x-rays to Steph, a brilliant childhood friend, currently a radiologist in Chicago. I do, but Steph is a realist, so I don’t always tell Carolyn the full story of Steph’s predictions. On the most recent x-rays, she says she sees a “satellite tumor.” This means there is most likely a larger one forming somewhere we can’t see on the x-rays. Carolyn is fighting so hard with her continual treatment and vaccines. I understand the need to encourage her and share in her hope. I say nothing.
Matson knows his mom is sick but has been distracted by developing an app for iPhone called Turtle Friend. When Carolyn was well, she and Chris took Matson to Nicaragua to see the work of an organization called Paso Pacifico. Sarah, the director of the non-profit and mother of Matson’s best friend, Jonas, invited them to see the annual beach hatching of beautiful but endangered s
ea turtles. The trip was a highlight of Matson’s youth, and after leaving, he wondered if it were possible to see what the turtles were doing now that they were hatched and out to sea. Chris, Matson, and Jonas have become engaged in figuring this out. They spend time together, creating something wonderfully new and technological that tracks sea turtles once they hatch. Carolyn loves to hear that people are supporting Matson and Jonas in this endeavor. Chris launches a Kick Starter Campaign to raise funds to build the technology the boys need. Carolyn has me write Facebook posts on her page enlisting financial support for Matson and Jonas’ project. Their schoolmates are supportive and throw a launch party at our local pizza place. What starts out as a pizza fundraiser, raising $512, grows into a whole campaign, eventually raising over $29,000. I am so happy for the boys. Matson beams from ear to ear when telling people about the new app invention. Even more so, I am happy for Carolyn, who has gotten to see her son’s success despite his young age. It dawns on me that even if the best scenario happens with her treatment, she will miss so many of her beautiful boy’s life achievements. The local paper runs an article on the boys. I keep it to frame. I make a folder for Matson and put it in the cupboard of keepsakes I keep for Fliss. This is my job now.
Four months of hardcore chemo are behind us. Eight months to go. Carolyn’s longest client and best friend, Alan, visits from Minneapolis. He appreciates great art and great food. He and Carolyn love to travel. Alan has perfected the art of pessimistic wit. The glass is always half empty but in a humorous and often highly entertaining way. He tells hilarious stories about growing up in Milwaukee and even better stories about working in the corporate world for thirty years. I have come to think of Alan as Carolyn’s brother. She stays with him often when she visits clients in Minneapolis, and Alan stays with her in Ojai when he needs a weekend off the map. He is smart. His heart is incredibly generous but not on his sleeve. Alan would describe himself as the opposite - a regular Jewish guy from Milwaukee who is moderately knowledgeable and mostly bored with everything and everyone. When I think of him, I think of him either in running clothes after a workout or in khakis and a button-up shirt at a museum. One time, to support Alan during the Twin Cities Marathon, Carolyn made “Go Al” signs she held up every few miles. You never get the feeling Alan is comfortable, but after you get over that, he’s the best person to sit next to in the peanut gallery.
“The best thing about a visit from Alan is that there is no crying or cancer shit,” says Carolyn. She’s right. Alan talks to Carolyn about things she likes - the art world, friends they have in common, the Bacon of the Month Club Carolyn signed him up for two Christmases ago, or travel plans he is making. It isn’t until we’re alone that Alan brings up Carolyn’s current condition.
“There’s no hope, right?” he asks, after two glasses of Carolyn’s favorite red wine, Road 31.
“Did you Google it?” I respond. Alan sighs.
“Then why is she going through with all this shit?”
“She says for Matson, Alan. She wants him to grow up knowing she fought to stay alive as long as she could for him.”
“I get it,” he says.
“Yes,” I answer. “But I also think she really believes if she can just stay ahead of death for five years, one of these brilliant doctors of hers will have found a cure.”
“What do you think?” Alan asks.
“I think you should say everything you need to say to Carolyn in person while you’re visiting.”
“Shit,” Alan sighs as I open another bottle of Road 31.
After Alan leaves, Steph’s conclusion about Carolyn’s satellite tumor proves to be right. Carolyn falls in the driveway while I am in New York on a trip with Fliss for her birthday. She suddenly has limited feeling in her right side. Her vision is starting to double. Tests conclude there is a new tumor. Dr. Yu’s vaccine made especially for Carolyn has not worked. I’m at the appointment with Carolyn and Chris when Dr. Rudnick tells us the news. I sit, stunned, as the doctor says there is the option of having another brain surgery, and he begins to list the possible aftereffects. These include permanent paralysis on the right side of her body and further loss of vision. I watch, detached, almost as if I’m dreaming this moment in time. Chris talks about surgery dates with the doctor. Her steroids were upped again after her fall, and she has made it clear she wants to hear all of her options at this appointment, so I say nothing. I’m fuming. The possibility of a third surgery? Are they all crazy? Will we keep opening up her head until she is paralyzed, blind, and unable to function at all on her own? I can’t get my mind around their denial of this horrific reality. The miracle vaccine – her only hope we were told-has not worked. This is NOT working. NOTHING is working. She is going to DIE. I know this, at this moment in time, with surety.
I am silent on the drive home. Rufus Wainwright plays faintly on the stereo. When we get home and I am alone with Carolyn, I manage to find the courage to tell her what I think. I remind her she made me promise, after the first surgery, when her pathology came back, that I would tell her when I thought it was “enough.” I tell her I know she never would have wanted to be paralyzed on one side, or to be blind.
“You want me to die,” she says.
“No Carolyn, I know you are dying. I don’t want to see you suffer even more.”
Despite my pleas and tears, the third surgery is scheduled. This is now what she says she wants. Chris does not oppose her. Carolyn, I realize, has slowly been leaving us. If she isn’t fully here, I wonder, where is she?
My best friend, George, calls. He can’t sleep. He lives far away in Salt Lake City. His mind can’t turn off thoughts of Carolyn. He’s a few hours from a Race for the Cure – a walk/run he is doing in her honor. This is one of the many acts of generosity we are witnessing from friends. I wish a fucking walk could make me feel better, but I’ve hit a new low. I can’t do anything. I can’t eat. I barely sleep. I continue to overload my schedule so I don’t have to think. It’s fucking Mother’s Day the next morning. I write Carolyn a note on her Facebook wall and post some beautiful photos of her with the children:
“Happy Mother’s Day to my Super Hero Big Sis who has not only been a second Mother to me but to my daughter. The depth of love I feel for you is unimaginable and unexplainable to others. You are my heart.”
Chapter 20, Sherman Oaks, CA 1998
CAPTAIN KIRK
It’s another sunny warm winter day in southern California. After having coffee at King’s Road Cafe, I call my mother and tell her “I can’t believe it’s February and I’m wearing a tank top. This weather never gets old. Snow days are a world away in Minnesota!” She laughs, saying she could use a “thaw out visit.”
Over coffee, a friend bragged to me about her amazing session with a visiting psychic in the San Fernando Valley. My new relationship with my boyfriend Dines is making me wonder what might happen down the road. What is my future? Is Dines “the one?” Will we get married and have kids? I am an impatient twenty six-year-old, waiting desperately for some sign that my real life will soon begin. I call the number my friend scribbles on a napkin and book an appointment.
My psychic session is set for Saturday in the back room of a clothing store on Ventura Boulevard. The psychic, a man named Andrei, looks more like a rock star than a mystic. He is tall and dark, has minimal facial hair and pronounced brooding eyebrows. He could be a relative of David Copperfield, the magician. I am invited to sit at a table in the back of the store. It is dimly lit with candles and a few streaks of light that emerge from under a back door. “I see a small boy who so strongly wants to come into your lives,” he begins.
“Our lives meaning me and my boyfriend Dines?” I question.
“Yes. But not in the traditional way. He will find his way to you. He knows his path. He chooses it.”
“Is it a dog?” I ask.
“No no. It’s a real boy, a round-faced cherub of sorts..he will look a lot like you.”
“I’m on the pill,” I con
fess. “I’m not planning kids anytime soon.”
“You don’t give birth to him. But you will help raise him. I think this is a few years off.” Suddenly the back door opens. William Shatner, aka Captain Kirk, walks inside. I pinch myself. Am I dreaming some crazy dream?
“Ohhh, pardon me,” says Mr. Shatner. He closes the door. I sit dumbfounded. “His daughter owns this store,” says Andrei. “Thank God!” I exclaim. “I thought I was losing it.”
Chapter 21, Brussels & Paris, 2011
FACE THE TRUTH
“OMG, You have to be kidding me!” I scream as I open my birthday gift from Carolyn. She has made me a homemade card with boxes to check on the sights we will see and experiences we will share while in EUROPE! Carolyn surprises me with a “sister trip.” I pick up the ballpoint pen she has placed in the box with the checklist. Eat French Fries in Brussels - check! Visit the Museum of Chocolate - check! Sip Rosé on the rooftop of the Pompidou Museum - check! Shoe shop in Paris - check! I am given specific instructions for the trip -Carolyn’s ideas about travel attire, priorities, and planning. Carolyn insists I not bring tennis shoes or a fanny pack. I don’t even own these items, so I tell her not to worry. Carolyn insists that we avoid looking too American, even commenting that if someone believes we are Scandinavians (ancestrally we are, so it makes sense that this could happen), we should not disagree. Because Carolyn learned French in Minnesota, I wonder if her French perhaps has a Scandinavian sound to it. Carolyn informs me she will be wearing her black leather knee-length boots. So I pack some similar boots she bought me in France a few years back. She shows me how the French women always wear their scarves and how to taste really good French wine. Apparently, we need to tell our waiters that we want wine the French like, not what Americans prefer. I plan to wear a scarf daily and revel in some spectacular red wine.
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