Authors: Carolyn Roy-Bornstein
19
Home
I tried not to pay too much attention to all the media in those early days. There was so much to do to help Neil recover. His first days home were terrifying. His head still ached from the slightest ray of light or shred of sound. We unscrewed lightbulbs and drew curtains. We tiptoed around the house. Our dog, Lucky, had been staying with Saul’s brother, Louis, while Neil was in the hospital. We thought seeing her might do him some good, so we called Louis and asked him to bring her over. Then we worried that maybe this was not such a good idea. Perhaps her barking would be more than Neil could tolerate. It was even worse than that. Louis opened the door and Lucky padded over to where Neil lay, waiting to be petted.
“Go away, Lucky,” Neil told her, a washcloth covering his eyes. “You breathe too loud.”
Neil slept most of the time. He couldn’t seem to keep himself awake for more than an hour at a time.
Ever since we first told Neil of Trista’s death, he would wake up from every dozing-off with the same question.
“Mom, have I been dreaming?”
Every time I’d have to tell him the same thing: “No, Neil. I’m sorry. I wish I could tell you it was all a dream. But it’s not.”
I’d have to wait for that news to settle in. Every time. Like a recurring nightmare. I felt like one of those Marines charged with telling a family that their soldier-son had died, only instead of delivering the body blow once, I was caught in a
Groundhog Day
–type scenario, having to tell Neil over and over again that Trista was no longer with us.
I arranged for a mental health worker to come to the house to provide that psychological evaluation that the Brigham had not. Bob had come recommended by a couple of friends, themselves therapists. I knew Neil couldn’t participate very much in the process at first. He slept much and talked little. But that was precisely what scared me. I understood that a lot of his fatigue was physical, from the brain injury itself. But I worried that I might be letting him slip into a deep depression. I also knew that Neil was by nature a young man of few words. But was his silence now just part of that quiet personality, or was it something more? Part of the injury or a sign of an impending breakdown? I needed help here. I was out of my league. I needed another pair of eyes watching Neil; another set of ears listening for signs of worsening despair. Our family had never been through anything this traumatic before. I didn’t know what to say to Neil. I needed help finding the right words.
The first time Bob came over, Neil was not up for a full therapy session. Bob knelt next to Neil’s makeshift bed in the darkened living room for a short while. He spent most of the session with Saul and me in the kitchen, describing his experience, telling us what approach he would take with Neil, suggesting ways we might support our son.
Even in my own field—medicine, pediatrics—I felt at sea. I made charts for everything. I kept track of his daily Dilantin, afraid that if I forgot a dose, he’d have a seizure on me. I recorded his Percocet too, worried I would overdose him. It was overwhelming. I was terrified. I didn’t know what parents with no medical or nursing background did in these situations. My own degrees were doing nothing to help me keep my own head above water.
Neil had changed physically in his short hospital stay. He had always been a thin young man, but a week in the ICU with near nothing to eat had reduced him to a disturbing package of skin and bones. I made him milk shakes with ice cream, Carnation Instant Breakfast, and raw eggs. I calculated the calories of each and entered them in a notebook. I cooked all his fattening favorites: matzo balls made with chicken fat, fettuccine Alfredo. I bought the cheap, fatty variety of hamburger for his American chop suey. I kept track of his “
I
s and
O
s,” intake and output, as best I could. I measured every cc that went into him. I listened outside the bathroom door when he peed, making checkmarks in the output column. I worried he would get dehydrated.
I called the visiting nurses and arranged for a physical therapist to come to the house. Pat was a godsend. She taught us how to do daily exercises to stretch Neil’s leg. His muscles had atrophied significantly—even Neil noticed it. She brought him a walker. She expertly looped a strap around his waist to steady him. Pat taught him to take stairs one at a time.
Friends called, both Neil’s and ours. They wanted to pay us visits. They had gifts they wanted to bring. We appreciated their checking in and good wishes, but none of us were up to visitors just then, Neil physically, Saul and I emotionally. There was a real “circling of the wagons” feeling about our immediate post-hospital life. Neil needed the curtains drawn to protect his eyes from the light. We wanted them drawn as a symbolic cocoon—shielding us from a world we didn’t feel ready to receive.
Those first days home, I pulled a mattress down from the attic and slept on the floor next to my boy. I listened for his breathing to grow even and deep before letting my own lids close. Even then I didn’t sleep well, rousing at each cough or turn. It reminded me of my first restless nights as a new mother when my children were newborns. I listened intently to their breath in the dark, wondering if I would be able to detect something wrong.
That first week Neil did get stronger. He put on some weight. He was able to stay awake for longer periods, though he still tired easily. Pat lent us a shower chair and taught Neil how to transfer himself in and out of the tub. His first foray into the bathroom alone led to a major water leak when Neil left the shower curtain outside the tub. But Neil learned his lessons well. He gained strength and independence. At first I held onto the waistband of his pants to support him as he teetered around with his walker or crutches. Later I tried to resist the urge to spot him. Neil swatted my hands away, but I always went flying into the room whenever I heard the walker clang against the wall or over a doorjamb. Invariably he was okay, balancing himself on his crutches, giving me his stern “I’m fine, Mom” look.
By the end of his first week home, Neil insisted that I get rid of the mattress on the floor and return to my own bed upstairs. So we bought him a bell to ring if he needed something and a baby monitor so we could listen to his movements at night. He never rang his bell. And though we kept our ears glued to the tiny bedside monitor, no sounds ever alarmed us. By this time Saul had returned to work. He owned his own business. No one was taking over for him. Without him no orders were placed, and deliveries were piling up. With me it was different. There were more than seventy health care providers at the clinic where I worked. They could easily take over my patient panel. I spoke with the medical director and told him I’d be staying home taking care of Neil until further notice. Dan finally flew back to Mexico to finish his Spanish-language course. His brother was home and healing. He could sense his work here was done.
By our second week home, I was feeling better. Physical and mental health therapies were in place. Neil and I had our routine. I felt more confident and ready to let friends back into our changed world. Ready to open up the circled wagons just a bit.
Neil’s friends from school came in bunches. They brought stuffed animals, stickers, comic books, and Heroclix, a kind of action figure that the mother of one of Neil’s friends called their “stupid little men.” Neil and his friends could play with them for hours. They sent journals with quilled pens, giant get-well cookies from Mrs. Fields called “cakies,” packs of Old Maid cards, bags of movies. Our friends sent flowers and fruit baskets and pots of homemade soup. A friend of mine from work stopped by frequently with what she called “Lawrence food drops,” fare from the ethnic neighborhood of the health center where we worked: tabouleh and stuffed grape leaves from George’s Lebanese bakery, seaweed salad from the Asian Market. The owner of the artisan bakery in town made us four huge loaves of challah, big as breadboxes, with shiny brown crusts. They were sweet and eggy inside, the best I’d ever eaten.
“None of the get well cards I looked at seemed quite right,” he told us sweetly.
My friends from town gave me lotions and bath soaps, passes to the gym, and invitations to the movies. They brought Neil word puzzles and gift certificates for video games they didn’t understand. A friend’s mother who lived in New York crocheted him a small afghan to throw over his shoulders or lap. Neil’s dentist sent a huge floral arrangement signed by the entire office staff. A quilt from the Linus Project ladies arrived in the mail.
We all got tons of cards, letters, phone calls, and e-mails from people with warm thoughts and prayers and well wishes. Some were from people we didn’t even know, people who were just moved by the whole tragedy and compelled to reach out. To touch Neil or us in some way.
One day Neil’s theater friends dropped by after school. They gathered around his makeshift bed in the middle of the living room, acting out scenes from the musical they were doing at the high school.
“This is how Grant sounds when he sings,” one would say and launch into an operatic falsetto. The crowd went wild.
“This is what Seamus looks like when he dances,” another aped, flailing his arms and legs in exaggerated moves. Neil was grinning broadly. I ached seeing that beautiful smile again.
The doorbell rang. It was Neil’s therapist, Bob. The theater kids parted to make room for him, starting to gather up their things.
“I guess we’ll see you later, Neil.”
Neil’s disappointment was obvious—etched onto his face like a Greek tragedy mask. A moment ago he had been a part of the troupe, or at least part of the audience. Now he was different, alone, in need of treatment. It took Bob no time to decide what to do. He checked his watch then looked at Neil and me.
“No, you guys stay,” he told them. “How about I come back after supper?”
Neil smiled. His friends set down their books and settled back in. I winked a thank-you, my heart melting with gratitude.
20
Please, Please, Please
I subscribe to the Anne Lamott school of prayer. She once wrote that, for her, there are only two kinds of prayers. The first one goes
please, please, please.
The second one goes
thank you, thank you, thank you.
During the early hours following the accident, I lived the
please, please, please
, beginning with running to the accident scene.
Please, please, please
. One foot in front of the other. Please let it not be him. Please not them. Deep down, I must have known that it was.
I prayed for so many things then.
Let it not be them
(denied).
Let Neil be alive
(granted).
Let Trista make it
(denied).
My God is not a father in heaven. He is not a presiding entity who watches over us. He may not even be a He. My God is more loving presence than omnipotent ruler. When I pray, it is more like hoping than asking. I am more likely to pray in a car than in a synagogue. For me prayer is part review: Okay, this is where my life is at. The other part of prayer is hope: Okay, this is where I want to be.
Please, please, please
.
Events such as accidents stop us dead in our tracks. They take whatever we were doing at that instant and make it suddenly trivial. In that one moment of the accident, every other thought melts away like sand castles on a beach, leaving just this one thing center stage. One minute I am working on my novel, happily typing away at the computer. The next, I am running through the cold praying
please, please, please
.
While I am very good at the
please, please, please,
in the days following the crash I always seemed to be a little late on the
thank you, thank you, thank you.
I don’t know why that is. Baseball players seem to remember to thank God the moment their feet touch home plate. They put their hands together, or make the sign of the cross, or give God a big thumbs-up on national television. Look at Tim Tebow, so grateful to God for touchdowns that he sinks to one knee in the end zone, making the sign of the cross. I read a story in the
Boston Globe
once about a lottery winner who brought bouquets of flowers to three local churches to thank God for his kindness. Me? It can be days after Neil has made it through another surgery or received encouraging test results that I remember to say, oh, yeah,
thank you, thank you, thank you.
It’s not that I’m not thankful. I am. Maybe I worry about using up my quota of requests. Maybe there will be something bigger and more important to pray for down the road in Neil’s recovery.
Maybe it’s because I’m busy. With each new piece of information, each new event to be grateful for, I have to move on to the next task that needs to be completed. He made it through surgery? Great. Now there’s pain to manage and physical therapy to arrange. The CAT scan shows the bleeding has stopped? Hallelujah! But there are still antiseizure drugs to titrate and mental health appointments to set up. One foot in front of the other.
Please, please, please
. Always something more to pray for.
In asking for things, in praying the
please, please, please,
I feel it in my gut. The anxiety of not knowing the outcome of an operation or a scan somehow makes the asking palpable. Praying for things feels visceral. I cannot know the future, but I strain to see it anyway. Gratitude comes more gradually to me, like a slow unwinding of the knot in my stomach. I can breathe again, releasing my angst like pent-up air.
I have probably sat cross-legged meditating more times than I have set foot in a church or synagogue. I slow my breath and clear my mind. I picture air flowing into me through the top of my skull, a point called One Hundred Meeting Places in acupuncture. It is a center of creativity and flow. I visualize good things streaming into me through that spot. As I exhale, I try to let go of my worries, releasing stress and strain. Maybe that’s why I forget to say
thank you, thank you, thank you.
If gratitude feels like a cleansing breath, maybe I cleanse away any thought or reminder in my head of thanking a higher power.
But maybe it’s more than that. Maybe I’m just not sure enough that there is a higher power to thank. They say there are no atheists in foxholes. Maybe Neil’s bedside is my foxhole and I’m praying like there’s no tomorrow during each operation or scan. But as each danger passes, as Neil survives the crash, comes through surgery, learns to walk, I come out of my foxhole, my doubts reemerging with me.
I use a mantra when I meditate. I was encouraged by a yoga practitioner years ago to choose a phrase that captures my belief system. It took me a very long time to come up with the mantra, mainly because I’m so squishy about what my belief system actually is. I was raised a Catholic. I loved the rituals: the smell of the smoking incense rising from the thurible our priest used to bless us congregants each Easter. I fingered rosaries and lit Advent candles. I walked the Stations of the Cross.
Later I converted to Judaism. I liked the liberal politics of my reform temple. There were also new rituals to learn and embrace. I could light candles on Friday nights, inhale spices on Saturday evenings. There were prayers for waking up and prayers for going to sleep. Prayers before eating fruit, breaking bread, or drinking wine. But how do you capture all that in a phrase: the religion that raised me and the one that called me? And the incense, the candles, the Hebrew, the prayers: Wasn’t that just ceremony anyway? Catholicism and Judaism were my religions, but were they a belief system?
My mantra came to me one day in synagogue. It was right after the part of the service where we explicitly acknowledge our duty to teach our children our faith, to pass on the torch of religious tradition.
“These words I command you this day you shall take to heart. You shall teach them diligently to your children.”
And there it was. My mantra:
L’dor Va’dor.
From generation to generation. It captured my belief system perfectly. Family. I believe in family. I believe in us: in me, my husband, my sons. We are there for one another. My husband and I have taken turns as breadwinner and homemaker over the years. Saul watched our children when I started medical school, laid off from his restaurant supply sales job. He later started his own business, selling plates and flatware out of our basement, boxes of the stuff piled under our Ping-Pong table. We have cared for each of our parents as they aged and passed on. Dan flew home to be with Neil, literally sleeping beside him in the ICU. That’s what I believe in.
Maybe I take too much credit for things in my life. Maybe I owe more to higher powers than I know. Either way, I’ll probably continue praying in this same random and haphazard way. To a God who may or may not be out there. Grateful when my prayers are answered but not looking for reasons why when they are not.