“Let’s cross one bridge at a time,” I said, desperately wanting to change the subject.
“I can’t do that. I will not be the creator of this level of pain for a child.”
I kept quiet. My daughter, sitting across from me picking at her food, green foam earplugs peeking out of both ears, head bent, hair falling away exposing a pretty startling craniotomy scar, clearly meant what she said and wanted to be understood.
That night in our hotel room, I set up my rollaway bed at the foot of Brittany’s bed. I wanted her to be able to sleep. I didn’t want her to feel me move or hear me clearing my throat right next to her sensitive ears. She fell asleep before I did, playing Scrabble on her Kindle. I crept over and took her picture. She looked like an angel sleeping.
The next day, we headed to a street fair. Brittany wouldn’t let me take any photos, and grabbed my camera to delete any picture taking I attempted. She allowed me to keep the one I’d taken of her sleeping.
“Dan took a photo of me sleeping, too,” she said, her head cocked to one side, her finger hovering over the delete button.
“Because you look like an angel.” I breathed the answer like a prayer.
Inside a restaurant, we ordered wine and dinner. Brittany began to talk about death. “I’m going to try to donate organs. I have to get my driver’s license in Oregon anyway. I’ll register for organ donation then.”
I looked across the table at my daughter’s huge almond-shaped sea-green eyes and she said, “I’m going to donate my corneas. They have to harvest them within twelve hours of my death, which will be easy to arrange, since I will know pretty precisely when I’m going to die.” The waitress set our plates of food down without a word and then retreated hastily. “My corneas will go to someone that is approximately my age.”
I looked at Brittany’s face, her beautiful eyes. Tears splashed onto my shaking hands.
“Oh for fuck’s sake, Mom. Can’t you be happy that some good could come from my death?” Brittany took a bite of her pasta.
I couldn’t speak. I couldn’t move. The noise and activity in the restaurant seemed detached, as though it was part of an old movie scene viewed through wavy old window glass. I felt numb, and I certainly couldn’t eat. I wasn’t able to search my purse for a tissue, or even wipe tears away with my hand. I could only sit still and feel my heart’s thready beat. The image of someone cutting her lovely eyes flashed graphically in my mind.
“Corneal transplants have a very high success rate. Someone might be able to see, thanks to me,” she added.
I felt dizzy and clammy.
Brittany continued to eat. “Aren’t you going to eat?”
I shook my head no, and the dizziness grew worse.
“This is ridiculous.” Brittany motioned to a busboy. “Could you bring us some to-go boxes?”
Brittany scraped the food into the boxes and paid the bill. I sat frozen, tears streaming down my face.
“Let’s go.” She was out the door before I’d staggered to my feet. When I stepped outside, I tripped and regained my balance. I looked around the crowded street, but I couldn’t see Brittany.
I knew the direction to go in. I began weaving around people, still crying. I realized that I wasn’t entirely sure how to get to our hotel. I stopped in the middle of the crowd and tried to orient myself, wondering if I’d stumbled too far down the street. The wave of people broke around me as I stood deciding whether to keep going or turn back.
Someone grabbed my arm. “Follow me,” Brittany said, dragging me forward for a short distance. She dropped my arm and took off at a brisk pace.
I followed, but couldn’t keep up. I was trying not to trip again, and by now my vision was blurry from crying. When I finally arrived at the hotel, the room door stood open. Brittany was already in pajamas and coming out of the bathroom. “Pull your shit together, Momma. I can’t take care of you when I have a terminal brain tumor.” She stuffed the earplugs in her ears and climbed on the bed with her Kindle.
I lay on top of the covers of the rollaway bed fully clothed, and continued crying. This weeping seemed not to be a choice, and it wasn’t loud. Usually when we cry, we sort of choose how long we will indulge ourselves. This crying seemed endless. I used the corner of my sweater to wipe my nose now and again. I didn’t think of anything, except occasionally I was forced to address how to breathe.
They say you can’t think of nothing. But when I recall this crying binge, I can’t remember thinking a single thing. Oh yes, I can remember one thing: thinking that I wasn’t sure if I’d ever be able to pull my shit together again.
The next morning, we went downstairs for massages. There was no mention of last night. When we came out of our much-needed therapy, Brittany slipped on her black bikini and acted like nothing had happened. That took some acting because my eyes were two puffy slits.
I put on my bathing suit, and we staked out chairs by the pool. Brittany took a photograph of our feet and the glittering pool, and posted it on Facebook. We ate a light lunch, saving room for the great dinner we hoped to have later that evening.
We got just a little sun, but it took a lot out of Brittany. After our showers, I asked if she’d like me to go get dinner so we could eat it on the balcony near the outdoor fireplace. I could see she was relieved.
I yelped nearby restaurants and settled on a charming Greek place across the road. We’d brought wine with us, so we uncorked a bottle of red and dined under the stars. That evening remains one of my favorite memories of that trip. We were loosened by massage, sunshine, and wine.
Our last day in Palm Springs was Valentine’s Day. We shopped in the part of town that caters to those enamored with midcentury modern décor. It was fun and relaxing, and Brittany found a few things she wanted. She selected a little pair of owls for Dan. “I’m going to write a note with them and leave them for him to open after I die,” she said.
I felt the familiar knife of pain in my gut. After lunch, we took the tram up to the top of Mount San Jacinto and hiked a little. Brittany’s energy was understandably still low, and I was grateful after my emotional outburst to not be hiking as far as Brittany would normally have insisted on.
A new phobia surfaced as I watched Brittany walk to the edge of the mountain and look out over the valley. I felt like I was going to hyperventilate. The fear that grabbed me was illogical and powerful. I was terrified that Brittany might fall and hit her head. I had suffered from claustrophobia since childhood. It was an embarrassment to me, but a very real physiological reaction to enclosed spaces. Now I felt that same panic rise in my throat. I called out to Brittany, “Come back here, further away from the edge!” and clawed the air as if I could magically pull her close.
“Mom.” The exasperation in Brittany’s voice was palpable. “There is no edge. It’s a slope.” She moved even closer to what appeared to be an endless abyss.
“I’m serious! It’s making me afraid. I feel like you could fall and hurt your head.”
Brittany laughed a hard, bitter laugh. “Hurt my head? Geez, Momma. I think my head is about as hurt as it can get.”
As we continued to walk around and take photos, I relived this irrational fear several more times. I tried very hard not to show it, but I would grab for her arm or make noise when she got near the edge.
“Momma, I need you to let this go! I’m going to travel between now and the time I die, and I’d like you to travel with me. But this overprotectiveness isn’t going to work. I want to go to Alaska. I want to hike on the surface of a glacier. I want to zipline, dogsled, kayak, and in general do anything that strikes my fancy.”
“Okay. I just feel protective of your head.”
“Well, I don’t. If I bashed my head and died doing something I liked doing, it would be a gift. It would save me from having to take things into my own hands, because this precious head and brain of mine are on a steady course to rob me of everything that’s important to me. And that, I’m not taking lying down.”
&nbs
p; It was time to head home. That night I told Gary about Brittany’s marked escalation in cursing, the discussion about donating organs, and my horrible reaction. “You were in shock,” he said. “It’s like Brittany has lost her ability to feel sympathy or compassion.”
I wish that I’d thought carefully about what Gary said. I wish I’d done some reading. I didn’t, though. I just thought that I’d been weak, that I’d tested her patience.
Much later, I read that victims of traumatic brain injury—and I would say having a chunk of your brain removed would qualify as traumatic brain injury—sometimes exhibit egocentrism and insensitivity to the needs of others, because they have lost emotional empathy and their capacity to understand the facial expressions of others.
Gary and I had several conversations about Brittany’s cursing, saying that we needed to de-emotionalize ourselves to it.
What I didn’t know then was that scientists had determined that strong swear words are not stored as sounds or phonemes (as other words are). Curse words are stored as whole units in the right hemisphere, and therefore we do not need the left hemisphere’s help to process them. There is also ample evidence that swearing affects human perception of pain. Humans are able to tolerate levels of pain longer while swearing than if just using neutral words.
How I wish I’d known this. It would have helped our family to depersonalize some of what Brittany was saying. As it was, my spirits were floundering. I worked as hard as I could to try to help Britt, yet I felt that nothing I did was good enough. None of us did. We were not doctors or clinicians, and we didn’t understand the neurocognitive changes that she had been undergoing for years. It would gradually become apparent to us that Britt’s impulsivity, her inability to apologize, her desire for adrenaline-pumping activity, all were quite likely a result of her slowly growing brain tumor. Because these behaviors were typical young adult behaviors, we hadn’t noticed.
Sunday morning at our house, Brittany stayed immersed in her laptop, sipping a cup of coffee and hopping up and down to do laundry. Gary and I prepared brunch as she sat at the kitchen counter.
As soon as we all sat down to eat, Brittany pulled her laptop over and asked us to watch something. It was a video of an awake craniotomy in which the patient was being asked questions. Gary, who gets queasy if someone cuts their finger, held up his hand. I looked at my husband’s pale face and knew he was nauseous.
“Brittany, stop,” I said. “We can’t have these kinds of discussions at mealtime. Let’s talk about this later. Let’s enjoy some downtime together.”
Brittany’s eyebrows drew together and her eyes widened in a bold stare. “You’re telling me that you can’t stand to talk about my illness, about my options?”
“Brittany, come on. Anyone would think that talking about, much less watching, a craniotomy at a meal is gross.” As soon as I said it, I knew that I’d pressed some irreversible trigger.
“Gross. Now I’m gross? My tumor is gross?” Brittany yelled.
“We’re asking to take a break from disturbing conversation while we eat,” I said. Gary’s face looked ten years older. He had pushed his plate away.
“You think it’s disturbing to discuss a brain tumor, to discuss a craniotomy? I’ll tell you what is fucking disturbing: Having a brain tumor and craniotomy!” Brittany snapped her laptop closed and pushed away from the counter.
“It’s not unreasonable to ask that we not discuss surgery or plans for death at the dining table,” I said, looking at my husband’s washed-out coloring.
“I’ll talk about this whenever I damn well please.” She opened the dog gate at the kitchen entry.
“Then we’ll have to ask you to go back home to Dan. We can’t live like this,” I said. “There have to be some downtimes where we let the subject rest.”
The dog gate slammed shut. “Really? Really? Like ‘this subject’ ever . . . ever . . . ever gives me downtime? Like ‘this subject’ isn’t racing through my mind 24/7?” She stormed down the hall and slammed the door to the guest room.
I started toward the gate.
“Let it go, Deb. Let her have some time.” Gary scraped his food into the trash can.
Later, working at my computer upstairs, I heard the front door slam. I ran downstairs and saw that all of Brittany’s things were gone. I’d been thinking about what she’d said. Of course she was plagued by this subject every waking moment. Were we selfish to ask that it not be discussed at meals?
As I stared at the empty room, everything felt wrong. Everything.
14
Spreading Wings
2000—2001, Ages Sixteen and Seventeen
But they fly. It is what fledged birds must do, and she’s always known that. The nest can’t always be full.
—Susan Fletcher, The Silver Dark Sea
I sat outside the hair salon, watching Brittany sweep the floor, collect the hair in a dustpan, and empty it in the trash. True to her word, she had gotten a full-time job as the receptionist at a hair salon. Seeing her do these simple tasks tugged at my heart. Her car was in the shop, and thus a great excuse to pick her up and have dinner together. Most of the employees were immigrants from Vietnam, and Britt had gotten to know one woman who’d escaped on a boat with only the clothes on her back. Brittany was learning up close and personal about people who hadn’t lived a life of privilege, and her heart and mind were expanding in new ways.
My therapist had kindly walked us through the steps we needed to take in order to get Brittany enrolled at the local community college. Her high school wrote a letter about Brittany’s stellar academic career there and sent her incomplete transcript. The community college accepted Brittany, and gave her special permission to take a heavier load of eighteen units. She was anxious to accrue enough credits to transfer. Because Britt was older now, I had left teaching and returned to sales for the much higher pay. This time I represented an engineering company that placed engineers in mostly aerospace environments. Once again, I found that I excelled in the sales environment. Often I didn’t come rolling in until eight o’clock at night, since I had a long commute.
Britt and I were squabbling again. Except they weren’t really squabbles; they were ugly exchanges that left me tired and feeling bad about myself. One day when we’d had a particularly vitriolic disagreement, I stopped by her room. “Sweet Pea,” I said, “all daughters do this angry dance in and out with their mothers. You dance away because you feel you don’t need me, and then dance back in because you still do need me. This is normal. Let’s just try to be a bit kinder to each other. Okay?”
Brittany came to the door and stared into my eyes. “Nothing about our relationship is normal,” she said. “I hate you, and when I’m able to move out, I will never speak to you again.” She started to close her door, pausing to say, “And for the last time, do not call me Sweet Pea!”
This war over absolutely everything went on for weeks. The good thing was that Brittany attended class regularly and was doing extremely well scholastically. Finally, exhausted, I saw the therapist again. “How can I continue to live like this? I’m not getting enough sleep, and every single day I dread coming home. Brittany turns everything into a world war.”
“I think you need to think of three rules that would improve your life. Only three. These rules are nonnegotiable. You don’t have to justify these rules. You don’t have to explain them. These are three rules that are not about Brittany. These rules are about you, and achieving an environment that allows you to work, because you are the breadwinner.”
“What do I do if she says no?” I asked.
“If she can’t follow these three rules, she will need to find another place to live.”
My mouth opened and closed. “She’s only sixteen.”
“And you’re worn to a frazzle. I’m concerned you’re not going to make it to your next birthday.” The therapist flipped some pages in her notes and looked up. “Brittany will be seventeen in a few weeks. She’s extremely bright, and she is a
lso very sure of your love. You are the target for all her teenage pain and angst. Right now that’s toxic for you. I’m quite worried about the situation.”
I nodded.
“I’ve dealt with many troubled teens. Drug addicts. Alcoholics. Cutters. Sniffers. Eating disorders. Brittany is verbally the most detached girl I’ve ever seen when in conversation with her heartbroken mother. Even all these hard, rough, kick-ass troubled kids would soften around their mother’s tears, but Brittany doesn’t. She’s lost the ability, for the time being, to see you as a separate human being with your own needs and feelings. I hope she will grow out of this stage. Because until she does, your life is pretty much like that of a donkey standing in the rain.”
I listened and nodded, thinking of how Brittany raided my closet or read my emails. I imagined a donkey, ears laid back, with heavy-lidded, limpid brown eyes, stoically standing in the pouring rain.
“When she was a child, you two had no boundaries. You became enmeshed. The teens are a natural pulling-away period for children as they begin to want to separate from parents and establish personal boundaries. However, you are not being allowed to do the same. It isn’t healthy for either of you.”
I decided to write a kind but firm note. I gave Brittany three rules. They had to do with my being able to sleep and be comfortable in my own home. Britt’s curfew was 10 p.m. Sunday through Thursday night, and 12:30 a.m. on Friday and Saturday nights. If I’d fallen asleep, I asked that she wake me up to let me know she was home. She must always ask permission to drive the car; “just so you know” would not cut it. The note explained that none of the rules were about her. The rules were intended to keep me healthy; to allow me uninterrupted rest during the workweek so that I could keep my job and pay the bills, including the bills for her education. I told her that I wanted her to graduate debt-free.
When I woke up the next morning, she was gone.
Over the next few weeks, I cleaned Brittany’s room and carpet. The grimy places she’d put her feet on the wall disappeared under a new coat of paint. I got a new bedspread for the bed.
Wild and Precious Life Page 13