As I Live and Breathe

By ELIZA BREWER

It was mid August when my mom and I made the trek into South Central Houston to visit Sidney. We wound through the dense medical district towards the massive complex of 5 buildings making up MD Anderson Cancer Center where Sidney, my mom’s former student, was being treated. As we made our way out of the parking garage, groping toward centralized air conditioning, I marveled at the sheer number of cars from all over the country occupying what was only a single corner of MD Anderson’s campus. I shouldn’t have been surprised. After dethroning Memorial Sloan Kettering as the U.S. News & World Report‘s best hospital in cancer care in 2015, MD Anderson boasted around 140,000 patients a year and rising.

If the boom in MD Anderson’s patient roster affected the quality of Sidney’s care, we certainly didn’t see any evidence of it. Just outside of the main doors was a garden with a reflection pool. Upon entering, we were greeted by volunteers who shook our hands warmly and asked what we were there for, then directed us past a wall of glass and some abstract sculptures to security. On our way to Sid’s room we passed a barber shop and a yoga class. I would have thought we had taken a wrong turn and ended up in a top-notch hotel or resort if not for the white coats and the sign on top of the building identifying the hospital with its classic red strike through the word ‘cancer’. The message was clear: if you want a cancer center, go elsewhere. This is an anticancer center.

I hadn’t met Sidney until that day, though I’d been apprised of her condition and treatment by my mom who had taken to visiting her often. Sidney was a student in one of the first classes my mom ever taught; they’d never lost touch in the many years since Sid had taken high school English. Sidney was diagnosed with a rare form of leukemia—a cancer of the blood—at 23. It was aggressive and wasn’t responding well to chemotherapy. As a last resort, her doctors sought a bone marrow donor and found a nearly perfect match in the database—an incredibly rare and fortuitous occurrence, Sidney told us, perched on the edge of her hospital bed. We were asked to wear masks because Sid was on immunosuppressors which put her at increased risk for infection. We weren’t supposed to touch her either but Sidney decided it was worth the risk to give us a bear hug.

She was in good spirits that day. It became evident as we chatted that she knew much more about me than I knew about her, but she wasn’t hard to get to know. She was funny and sharp despite the cocktail of heavy pain medication dripping down an IV line all hours of the day. She invited my mom to sit next to her on the bed. I watched them talk and laugh as Sidney pulled up funny pictures on her phone and messages from friends. She wanted to make us feel comfortable. Sidney had adjusted, at least a little bit, to her new way of living, but she understood that others had not yet adjusted to seeing her here, and she wanted to help make that adjustment a smooth one—a testament to her mindfulness and capacity for empathy. She wasn’t afraid to discuss her cancer, either. She showed us the bruising that peppered her legs and her swollen ankles. She recounted to us the loneliness and deep bone pain she felt during weeks spent confined to a hospital bed. She talked about how badly she missed her two-year-old daughter, Charlie.

 

It’s been three years since I visited Sidney. My mom is headed to lunch with a friend and I’ve asked her to take me to the museum district on her way downtown. She drops me off at the entrance to the Houston Holocaust Museum. I’ve been visiting the HHM every year since I was nine, save the most recent few years while I’ve been away working and studying. It feels like a pilgrimage I must make when I can, and today I’m honoring the tenderness I have for this personally sacred ground. The main gallery houses all of HHM’s permanent exhibits; I know the walk by heart. I remember my first time visiting, after months of begging my mom to take me. She held my hand while I bounced around the gallery, leaving our tour guide in the dust to examine a beautifully preserved Torah saved from the fires of Kristallnacht. My mom confessed to me, much later, that she had nearly taken me to therapy instead of the museum. She was worried that my newfound obsession with the Holocaust was evidence of something dark brewing in my psyche. I don’t blame her. Calling my interest a morbid obsession was perhaps not an overstatement. After learning about the Holocaust from a documentary in my fourth-grade music class, I relentlessly devoured novels and memoirs like Number the Stars, Milkweed, and The Hiding Place. Much to my mom’s horror, I talked about the Holocaust constantly and in detail with everyone: teachers, other children, and at gatherings with friends and family, spewing facts and asking questions. I begged her one night to take me to a talk by a survivor instead of attending my usual Jiu Jitsu training. She took me to Jiu Jitsu, kicking and screaming.

I now recognize my behavior as a reaction to what had been a difficult year. The summer of fourth-grade found me playing underneath our pecan tree while the neighborhood adults gathered in our driveway, whispering quietly. They were talking about our neighbor, Teresa, and the cancer that had been found during a routine surgery—stage four, incurable. I stopped my see-sawing to listen. Teresa was my favorite neighbor. She always bought my fundraiser cookies, and she allowed my siblings and me to play in her yard as often as we wanted, sometimes sitting on her porch to chat with us. Learning of her imminent decline was the first event that hit me squarely in the death spot. As Ross Gay puts it, “I had the stark and luminous and devastating realization—in the clear way, not that oh yeah way—that my life would end.” That’s the death spot—the place I landed, graceless and tumbling that summer afternoon.

My horror found another foothold as I attended my first visitation later that same summer. It was for a woman named Lisa, a friend of my mom’s and a gregarious and well-loved patron of our church, Baytown’s Second Baptist. She was in her 30s or perhaps early 40s when she died in the middle of a business meeting as a result of a pacemaker malfunction, leaving a husband and three girls behind. I had never met Lisa and I remember feeling incredibly awkward milling about in the cramped anteroom after viewing her body—young, beautiful, and caked in runny makeup—as an impressive line formed all the way out to the parking lot, people shouting condolences over the roar of an industrial fan. After the viewing, my mom and I located Katie, Lisa’s middle child. Katie was my Sunday School classmate and friend. She looked stunned and exhausted. She kept glancing at the adults around her, rotating between smiling, frowning, and tugging at her dress as though seeking cues as to how one should act at their mother’s visitation which, in hindsight, she probably was. Until that year, death had been a theoretical and mystical phenomenon; it didn’t belong to reality. It was also a taboo subject.

This taboo extended even into Sunday School and Sermon where death was discussed only in the context of bereavement prayer requests or as a troublesome hiccup on the way to eternal salvation. In the halls of Second Baptist, a place where my ontological and spiritual questions about death should have had a perch, I came up empty handed and isolated. Home didn’t offer any answers either. With parents working full time and maintaining a household of four small children, the demands of daily upkeep and the necessity of rest offered no space or permission for big questions. I also had a job to do: help raise my younger siblings. What was left to do of my own raising, perhaps the most delicate part, was left to me to do on my own. School also didn’t offer what I needed, and though I’m grateful for some teachers who taught books like Where the Red Fern Grows and The Giver and played Holocaust documentaries, there were far more instances of death denial than there were of death education. I remember, in the fifth grade, hearing people whisper about an important and grown-up movie we were meant to watch that afternoon. I was elated, convinced that someone was finally going to sit me down, pop in an instructional video (perhaps Miss Frizzle would be tackling the science of dying this week) and relay the secret of living while carrying death. Instead, a girl named Tina and her friends were on screen, listening to a girl-talk radio hour about menstrual products and body hair, filling us in on the finer details of puberty and conception. To say I was disappointed is an understatement. It seemed to me that teaching children about the creation of life without also teaching them about its cessation was a fundamental misrepresentation of reality.

After Lisa’s visitation, I couldn’t stop thinking about dying, imagining in detail myself and the people I loved suddenly winking out of existence. Children are sensitive to the unsaid, taking signals as to what is and isn’t acceptable to discuss and think about. I took those signals of death denial from church, school, and home to heart, often feeling as though I was the only person carrying around a deep terror. I felt crazy and alone and, though I couldn’t articulate it at the time, what I really needed was to find someone who was able to set aside platitudes and abstract talk of salvation. Someone to sit with me and my fear, to acknowledge it and to let me cry, maybe even cry with me, and to reassure me that there were ways to live with intimate knowledge of death. Holocaust suvivors were an ultimate expression of this form of living, and their stories were vulnerable enough to offer me some solace, company, and education.

 

During our visit with Sidney, I tried to be present with her. Sid’s room was spacious and on the wall next to her bed hung a canvas photo of her and Charlie at the beach, both of them grinning, holding hands as they searched for seashells. I admired the picture as Sidney searched for the bright purple wig she’d taken to wearing when she went to support groups. I asked about the support offerings and she dug a paper out of her bedside table. I scanned it and was surprised to find no groups for terminally ill patients or for coping with dying, especially considering that, even with the premier level of care available at MDA, long term survival was still the exception, not the rule. But Sidney wasn’t dying, she was healing. Her labs were promising. Her transplant had gone well. She had the best doctors. Most importantly, she was hopeful. Everyone, including my mom and me, bolstered this hope. We left Sidney with a small gift, a unicorn t-shirt to add to the collection of unicorns she’d been amassing since her diagnosis—like Sadako collecting her paper cranes—and a promise to visit again soon.

Sidney died in July of 2019, a little less than a year after our visit. Her transplant failed and her cancer came back. Her doctors tried experimental treatments and new medications that blistered her insides instead of the cancer. Her prognosis was poor, so early in the summer she made the brave and burdensome decision to stop treatment. To die at home with her family and her daughter. My mom saw her one last time, a few months before her death. She called me afterwards, sobbing, “She’s ready to die, Eliza.” I missed the funeral. I imagined a line out the door, condolences, and industrial fans. I imagined Charlie being held, passed around from person to person until she reached my mom’s baby-seasoned arms.

 

Today I’m visiting those HHM exhibits that impacted me the most as a child. First on my list is the German boxcar. A tour guide once told me that the museum had no evidence to support that this particular car had been used to transfer Holocaust victims to concentration camps, they were simply using it as an example. Then, one day during a routine cleaning, a small, rusted engagement ring was found wedged into a crack in the boards. There is no way to track down who the ring belonged to or whether or not its owner survived the camps. But our guide told us that it confirmed that the car was a legacy of the Holocaust.

The guides at HHM were saints in my eyes. They were a group of mostly women—skilled educators for a broad audience, even children, though I was usually the only person under 18 in attendance. I remember them pausing along the tour to allow me to ask clarifying questions, asking questions of their own to make sure that I understood words like ‘genocide’ and ‘ghetto.’ What was most important to me, however, were the points during the tour at which our guides would invite us to put ourselves in the shoes of Holocaust victims. These invitations to confront fear, death, and violence were, paradoxically, healing. In the garden monument, surrounded by stones etched with the names of Holocaust victims, my anxious mind found some stillness and, in that stillness, an answer to some of the questions that had been eating at me so persistently. Namely, that when it comes to death and dying, acceptance and leaning into experiences of grief are key in allowing ourselves to come to terms with what is perhaps the most inevitable event in our lives. I also learned, through emotional encounters with visitors who didn’t speak English, that death can also be a great unifier. Despite the heaviness of these topics, the guides and welcoming environment of HHM allowed me to feel held by death instead of weighed down by it.

Upon my first entry into the boxcar, I was invited to empathize with the ring-owner. I pictured a woman, trapped inside for hours, maybe days, huddled against the edge of the car with no possessions but the ring on her finger. She realizes that she can’t take even this where she is going, so in an attempt to prove she was there, or with the hopes of returning to find it, she meticulously inserts the ring between a crack in the walls. I felt her fear and sorrow, I wept and was not alone.

 

I wonder what the person who cleaned out Sidney’s hospital room may have found, forgotten or left deliberately. A receipt for taquitos, a left-behind unicorn. I wonder if the orderly pictured Sidney’s last days. I wonder if they wept. While, to MDA’s credit, there is a comprehensive palliative care wing catering to patients’ physical, spiritual, and emotional needs, this approach to end of life care is new and was initially met with skepticism. Dr. Bruera, chair of palliative medicine at MDA, said in an online article about the center’s palliative care wing, “At first, physicians and other health care providers were suspicious of palliative care practitioners, because they didn’t understand our role. They thought of us as ‘grim reapers.’ Acceptance was slow.” Today, I can find no public information about how the palliative care team supports patients in having conversations about the fear and loneliness that go hand in hand with dying, conversations that don’t involve logistical planning or improving quality of life. In an article on MDA’s website titled “Finding peace after my terminal cancer diagnosis” patient Larry Butler says, “The truth is, we all have a choice: wallow in self-pity – and it would be justified – and remain miserable, or get out of the mindset of dying and focus on living.” But dying is a part of living; it was a part of daily life for Sidney those final months. It was unavoidable as her body broke down a little bit each day and she became increasingly dependent upon others to perform the maintenance of living. What does a patient do at this stage? Are there mindsets of dying that empower instead of making a patient “miserable” and, if so, why aren’t we employing them for everyone, ill and healthy, young and old? As a child I craved such an approach. I can only imagine how much more immediate that craving had I been in Sidney’s shoes.

 

I pass by HHM’s garden monument towards a newer exhibit, a gallery housing dozens of paintings by Samuel Bak, one of the many Holocaust survivors who settled in Houston after the war. I’d forgotten how many of his paintings are about childhood. It is obvious how deeply the intensity of Bak’s own childhood experiences of death affected his work, animating paintings of young boys in various states of precarity. My favorite is a piece titled “Study for Akedah.” It depicts Isaac collecting the wood he will be bound to—the Akedah (the binding)—by his father, Abraham, before he is to be burned as a sacrifice to God. A masked symbol of death embraces Isaac from behind as a ladder rises towards the sky. This is Isaac’s education, his study. He, too, learns best when he is held by death. On my way out, I stop by the theater. On screen is a Houston survivor I’d seen speak before. “Mercy,” she had said, “is protecting someone’s ability to live and die on their own terms. Violence is depriving someone of that right.”

 

I have no doubt that Sidney died with as much mercy as possible under the circumstances. MDA has wonderful counselors and spiritual advisors. Her family screened messages those final months, filtering out the ones asking her to keep fighting, to be strong. They gave her a safe place to rest. I do wonder, though, how much mercy any of us are allowed in this oil city where free particles of benzine, an extremely carcinogenic compound, hang in the air like the bullets of angelic warfare. Where, in a way, cancer lived chemically in the early thrum of oil and industry before civilization did. Where denial exists under the guise of righteousness or of care, monuments to this righteousness standing steepled and gleaming on every other street corner. Where there is still no listed support group for the terminally ill at the nation’s premier cancer center.

 

I tell my mom about the subject of this essay while we sit on our apartment balcony looking out over the Exxon plant that built our town. She takes a deep breath. “It was really hard after the funeral,” she said. “There was no one at home who knew Sidney. No one to talk to about her death. And I needed to talk about it. When a young person dies, you can’t take anything for granted anymore. It reminds you that people do bury their children.” I know this is an ultimate fear of hers, being a mother of four. She’s said before that if any of us were to die, you might as well bury her too. But if my mom gets her way, that means that one day I’ll have to bury her, a thought that I don’t like to entertain. But still I ask her: “What do you want to happen? When you die, I mean.” We talk for I don’t know how long about her evolving spirituality and my more stagnant beliefs, about quality of life and the point at which she would prefer to cease medical treatment. We also talk about how hard this conversation is, how terrifying it is to acknowledge, in the clear way, not that oh, yeah way, that all security in living is illusory. My mom’s greatest confrontation with this fact was the death of her brother, Anthony, a young navy man who died in a car accident when I was a baby. We cry, grieving for ourselves, for Anthony, and for Sidney: a small mercy.

 

Eliza Brewer is an editorial assistant at The Common. 

As I Live and Breathe

Related Posts

Poem Pictures

To Autumn: Reading Keats in Pandemic Winter

NAILA MOREIRA
I’ve never felt so close to death as in the moment of birthing my baby. A hole into the blackness of the universe seemed to yawn, confronting me with the boundary between nothing and identity, the void from which we yank the stuff of emergent life.

Lolita in the Afterlife book cove

Badge of Honor

SUSAN CHOI
The safety I felt with that older man didn’t surprise me at the time. What shocks me now is that my trust in that hoary scenario didn’t get broken. This was pure luck, as my survival of the car crash was luck. No one sets out to have a car crash with the idea it might do them good.

Hand Writing

Mother’s Tongue

JENNIFER SHYUE
I thought to confirm this fact with my mother. She said, the expressive brows I inherited perplexed: “No, your first language was English.” Yesterday, I asked my mother the question again, at a slant: What was my first word? Her brow bunched. “I don’t remember,” she said.