I think about our wedding, four months ago. My sister and I each eloped in the ’90s, and our mom still holds a grudge. Her mother had died a month before her own wedding; how dare her daughters exclude her from theirs? This was unforgivable, a fact she reminded us of, often. Michael’s and my wedding was a chance for me to redeem myself. She wanted to be involved, so I asked her to make some appetizers—a task she normally loved and excelled at; I asked her to walk me down the aisle with my dad, one of them on each arm, something a mother is not usually invited to do. I thought she would be thrilled, that this would be a dream come true. Instead, she spent the whole day complaining about the work I had forced her to do and saying she thought she was having congestive heart failure. Instead, she printed up an e-mail she had sent me, one I had ignored, one suggesting Michael’s dad and his wife should sit at the head table with the bride and groom while Michael’s mom, Jette, should sit across the room with her ex-husband’s children from his current marriage. She left it where Michael’s mom could find it, and Jette went into a tizzy, slapping the printed-out e-mail like a tambourine as she stormed around the reception hall.
Still, I look back on that day with great fondness. The marzipan pears on the cake. The vines embroidered on my dress. The way Michael and I kept kissing each other during the ceremony, leaning forward and kissing even before we were named spouses for life, our curly hair coiling together. Once, when I was still married to my first husband, a stranger came up to me and Michael and said, “If you two have kids, imagine the hair.” It was something we couldn’t have dared to dream about then, but here we were, getting married, a baby predisposed to curly hair growing in my belly. Kissing, kissing, kissing.
[BUZZ BRANDEIS, FORMER HUSBAND, sits in front of the bougainvillea on the patio of ARLENE’s house in Oceanside.]
BUZZ: I had known Arlene thirty-six years. She had no interest in painting, had never shown any interest in painting, had never picked up a paintbrush to my knowledge, and then one day she said, “Buzz, I have to paint. I need to paint.”
[ARLENE BAYLEN BRANDEIS stands in front of Four Dead Brothers, yellow, green, and red paint dripping down the canvas. The red paint forming an unintentional letter “A” right next to her head. She is wearing a lime-green jacket over a black turtleneck, a horizontal silver pendant draped over the front of it, a small microphone attached to her lapel. Her hair is cropped short; she is wearing glasses and small hooped clip-on earrings (gold; her ears will only accept gold. Her earlobes have a permanent crease from years of gold clip-ons).]
ARLENE: Out of the blue, I just had this need, this urge, to make art, and I had been a docent for years; I loved contemporary art, I like to study it, I like giving tours at the museum. But all of a sudden, I had this welling up of need to make art and I thought I was going to paint about opera because I had been in operas, I had little walk-on parts at Lyric Opera of Chicago as a supernumerary and we had been opera subscribers for twenty-seven years so we saw a lot of opera and I was sure I was going to paint about opera, and I knew it was going to be geometric or I knew it was going to be drip painting, and I thought I’d kind of play around with art posters in some kind of abstract way, and so I had this welling up of a need to make art.
BUZZ: And so she started trying to figure out how to do that.
ARLENE: I want to work large. My home, you know, just wasn’t right for painting, so I found this little studio in Aurora, Illinois, which was about fifty miles west of Chicago, and it was above a store and it had windows to the south, that was perfect lighting, and it had this whole wall of windows and I was able to get a six-month lease.
And so I got into the studio and I bought all these canvases and some house paint and, later, acrylic paint and I thought, you know, what am I going to . . . where am I going to start? And then I started thinking about my sister and I thought, well, maybe it’s not opera I need to start painting about; it’s probably about my sister, Rochelle, and her sad life, and I started thinking of Rhapsody in Blue—I knew I was going to paint to music—and sure enough, all of the flood of memories . . . This was in the year 2000, and these deaths, of course, began with my mother in 1967, and so this was long after all of these five deaths, and it was like, it was like something otherworldly happened. There was a spirit that embodied me and it was kind of automatic, like automatic writing that you hear some people talk about. For me, it was automatic painting, but I knew what it was when it was happening; I knew what it was about, and all of a sudden, just these paintings poured forth.
BUZZ: After a couple of weeks, I thought I’d visit her and I was astonished by what I saw. She had started to paint and was in the midst of painting a couple of large pieces, and I couldn’t believe what I saw—they were colorful, the design was there, and it just amazed me because she had no training at all.
Mom,
You oohed and ahhed over baby Hannah. You made a big show out of each toy, each piece of clothing, you brought for both grandkids, drawing each one slowly of out of a plastic Gap bag like a magician pulling a bunny from a hat. But something was off. Something in your eyes. In your restless energy. And then you started to talk about white vans.
“They’re following me,” you said. “White vans following me everywhere I go.”
I flashed on when I was a kid and a girl in our area had been abducted into a white van with no back windows; I had grown up distrusting every single white cargo van.
“There are lots of white vans around here,” Matt told you as I tried to tamp the panic rising up my spine.
“Yeah,” I added. “Remember when we were in Scottsdale and the parking lot at our hotel was full of white cars?” It had looked eerie, like a ghostly car cult. Then someone explained to us that everyone had white cars to reflect away the Arizona sun. “It’s like that.”
“I have the license plate numbers.” You glared at me.
You could be stubborn, narcissistic, judgmental, melodramatic, overly sensitive—when you weren’t being creative, supportive, ballsy, generous, loving and fun—but you had never been paranoid before. This was new, and this was terrifying. I was grateful Arin was busy with his new puzzle and couldn’t see the expression on your face. Or mine.
“Your father’s behind it,” you said. “Your father put them up to it.”
“Mom, what are you talking about?” I asked, cold sheets of adrenalin cascading down my body. Dad was, is, the most gentle guy a person could imagine—soft spoken, funny, completely devoted to you, even now.
“There’s a lot about your father you don’t know,” you said.
You showered me with papers. It was like they were rice or flower petals at a wedding. You tossed one white page after another, hurling them across the coffee table, but these pages weren’t thrown in celebration; these pages were thrown with anger, with spite. You spit them at me like bullets while I held newborn Hannah; I wrapped myself around her so the pages wouldn’t nick her new skin.
You told me the papers meant Dad was hiding millions of dollars from you, from us. You told us he was part of a vast international money laundering scheme, that these “hand notes”—random jottings of numbers—proved it.
“Look!” you yelled as you tossed another page, as I cowered, frozen, as if the paper had been laced with anesthesia. “Look what your father has done!”
The pages fell around me like snow. I was covered in a drift of white and numbers. Everything I knew was drifting away. I was still bleeding from birth, wild with sleep deprivation. Life was already a fog, but you turned it into a blur, a whirl, dizzying as those carnival rides that plaster riders to the wall. The only thing that kept me from spinning off my own axis was the sweet weight of the baby in my lap.
NOVEMBER 22, 2009
My belly wakes me like a punch at 6 a.m. This is no Braxton-Hicks contraction. I wait for another one, which arrives a few minutes later, making me gasp, then another, then another.
I’m having a baby.
I’m having a baby!
Up until now, the baby has felt somewhat theoretical. I’ve felt him move, of course; I’ve talked and sung to him; I’ve seen him on the ultrasound; I have blankets and diapers and onesies ready; my breasts are leaking colostrum, but part of me has believed I’d be pregnant forever. Part of me hasn’t fully comprehended I’m going to have a real newborn in my life again after almost sixteen years. A rush of excitement travels through me. A baby!
I remember the whorl of hair on the back of Arin’s head when he was a newborn; I remember the little rosebud purse of Hannah’s lips, the way she held them in an “o” right after she was born, as if she was in constant amazement at the world she had just entered. I remember the burnt sugar smell of their new scalps, the way they looked right into my eyes as they nursed.
I should probably let Michael sleep—we have a big day ahead of us—but I can’t help myself; I whisper, “I’m in labor,” into his ear.
“Awesome.” He touches my belly and gives me a groggy smile without opening his eyes.
Then I remember my Mom is right down the street and the excitement curdles in my veins.
“What if she shows up?” I ask. “I can’t go through labor with my mom here!”
“Her car is here,” he reminds me, his eyes still closed. He’s snoring before I slip back out of bed. I’m glad. Michael is intensely empathic—if I get a headache, he gets a headache; if I get a urinary tract infection, he gets a urinary tract infection. If anyone has ever been a candidate for sympathetic pregnancy, it’s Michael. I worry that I’ll have to support him through labor more than he’ll have to support me. Plus he often gets deeply tired—dark orange circles under his eyes kind of tired, skin-turning gray kind of tired, the kind of tired that makes me worry about his health, which makes me worry about our future. The more sleep he can get this morning, the better.
I sit on the giant pink ball in the office and call my sister. I groan with each contraction, and she coaches me through it, her voice calm and encouraging. Her clients are lucky to have her as a midwife.
“I wish I was there,” she says. She’s not due in until Thursday. Thanksgiving.
“I wish you were, too.”
“I’ll try to get an earlier flight,” she promises.
Michael shuffles into the office a couple of hours later, his curly hair wild.
He checks his e-mail. “Huh,” he says. “She went home.”
“What?” I ask, the ball rolling beneath me. “How?”
He gestures for me to come over. When I do, he pulls me onto his lap even though I’m worried I’m going to crush his skinny legs. He nestles his chin on my shoulder as I read the e-mail:
Michael, you are the dearest son-in-law any woman could hope for. Thank you again. I hope both you and Gayle are feeling well, it is not my intent to create havoc in her life at this tender time. Unfortunately, someone else has created havoc in my life, the domino effect happens.
I left the hotel around 2:30 am. I knew it would not be a good night when I saw what I told you about. A noisy group occupied rooms 213 and 215, on either side of me. They were speaking loud and stomping around outside my room. It sounded like a couple, and at least two east Indian men, speaking on the cell phones asking more to join them. When they entered the rooms on either side of me, I dressed, asked for security and a cab. The night desk clerk came up and put me in the taxi to pick up my car. I did manage to sleep from about eight to midnight.
We will need to decide how to manage Thanksgiving. I am unable to be with Buzz. It would put me in a coma. Perhaps since Elizabeth is not due in till 2:30, and I will bring much of the food, Buzz could come late or wait until Friday. Another option would be for me to wait to see Elizabeth until Friday. I’ll do whatever. The first Thanksgiving I was in California, Elizabeth was unsympathetic about my being alone. She said “you choose to be alone,” because I moved to California. At the time I did not understand my separation was a package deal with my daughters. And both Gayle and Elizabeth never understood my leaving their father was not a choice but a need.
Thanks again.
The drive home was very foggy in spots, but I managed just fine.
Much love to all of you.
Your very appreciative mom-in-law
Reading my mom’s words makes me wonder once again if I’m being too hard on her. Her love is coming through the e-mail in a way it hadn’t in person. The fact that she understands this is a “tender time,” that she doesn’t want to cause havoc, softens my heart toward her. Maybe she’s not as far gone as I had feared. Maybe she’s just foggy in spots.
“She’s not right down the street,” Michael whispers into my ear. I nod as a contraction lifts me off his lap.
“Time to call the midwife?” he asks.
“I think so,” I tell him, trying to breathe.
“I better set up the birthing tub,” he says, and heads into our bedroom to deal with the folded up inflatable pool and the monstrous-looking air pump. It starts to whine in the background like a lawn blower, and I growl through another contraction. Hannah peeks out of her room to see what all the ruckus is about.
“I’m in labor,” I tell her, still bent over, and she looks alarmed. She calls her dad, who she hasn’t seen in weeks, and asks him to pick her up. I don’t blame her. I know how hard it is to see one’s own mother wild-eyed, strange sounds coming from her mouth.
From: Arlene Brandeis
To: [email protected]
Cc: Elizabeth Brandeis
Sent: Friday, March 27, 2009 2:28pm
Subject: “The ART of MISDIAGNOSIS”
Dear Gayle and Elizabeth,
I want to let you know about the producers I met with, Kerry at KPBS and Peter at KOCT. They are both astonished (I’m unfortunately accustomed to being treated that way by both of you) by your lack of support. You may both want to reconsider, and decide to support me, and help with my project, with your presence and individual stories.
Having successful and powerful women who have transcended these genetic problems, is the face I want to present. The whole point, to give hope to others and to lift these two conditions out of the pack of 6000 conditions in NORD, National Organization of Rare Diseases. I fervently believe Porphyria and EDS are not rare conditions, only rarely diagnosed properly. Desiree Lyon told me something interesting. “Porphyria had a spike during the Atkins Diet craze.” The importance of understanding the role of carbohydrates and vitamin C are such simple things for the general public to understand. There may be hundreds of thousands of others who are like Rochelle, lives that have been ruined by mental health professionals misdiagnosing many like her. I also believe there is a link to post-partum depression and Porphyria. There may also be thousands who could be saved from sudden death with vitamin C, from Vascular EDS.
Another reason your absence would reflect poorly on you, the program will be dedicated in the memory of your grandmother.
The producers both think this is an important project that could attract a lot of attention.
I want to be sure if we film the EDS group in my home on the 27 of April, you will not make me uncomfortable, Elizabeth, talking about my art and the medical history of my daughters. I may change the date of that shoot if you give me a hard time. There is a family (mother and two sons with EDS) who want to come in from Texas on that date. Cindy Lauren, the Executive Director of the Ehlers-Danlos National Foundation will also be in from LA. Dad will also record his impressions of my “painting out of the blue in 2000.” At the very least, it would be good to have both of you help behind the scenes. We may also film a Porphyria expert on LA on May 6, with Desiree Lyon, Executive Director of the American Porphyria Foundation, who will also come in from out of state.
Love,
Mom
Mom,
So much of the time period after Hannah’s birth is hazy to me. Did I confront you or was I was frozen, numbed by your flurry of paper? I am guessing the latter, but it would be good to know for sure.
I texted Ma
tt to see if he could help me fill in some blanks, help illuminate some spans of that time that have gone dark in my brain. He texted back saying he wasn’t interested in rehashing the past. Rehashing is all I am interested in, though—gathering choppy bits of my life, throwing them together, trying to create something cohesive; a bunch of leftovers seasoned to taste, like any good hash.
The first time Dad called you, he said, “I love hashed brown potatoes!” when you answered the phone.
No “Hello.” No “Um, this is Buzz, we met the other night at the Quadrangle Club?” Just a bright, enthusiastic, “I love hashed brown potatoes!”
Fortunately—for the sake of my own, and our descendants’, existence—you didn’t hang up. Fortunately, you laughed. Fortunately, you remembered the line, which came from an Ionesco play you had both seen the night you met.
You had been taking a Great Books class through Adult Education at the University of Chicago; your class attended the play and a reception on campus afterward. Dad came as the guest of one of your classmates. He was getting over a rough divorce; he had been living in a small hotel room where he had to put bottles of milk on the window sill to keep them cold, where there wasn’t much room for his teenage kids Sue and Jon to visit. You were getting over the death of Eli, the man you would consider your true love the rest of your life. Dad thought you looked exotic; he imagined you were Greek.
I can visualize that night more clearly than I can picture much of my own past. I can see your short beehive hairdo, your salmon-colored cocktail dress, the cigarette perched in your elegant hand; I can smell the waft of whiskey in the room, can see Dad’s slicked-back hair, the gap between his front teeth, his fitted suit as he leans toward you, enchanted. He looks so young; you are surprised to learn he is twenty years older than you. I hear live piano music, ice clinking in glasses, people talking about absurdism as they lift rumaki from silver trays. I can see you trying to keep up with the conversation, smiling, using words you’re not sure you fully understand.
The Art of Misdiagnosis Page 4