By Maeghan E. Arnold

Summer, 2013

Pure bliss. I was 26 years old, enjoying the summer off from graduate school and life as a newlywed. I married my soulmate that May in an intimate gathering of friends and family. My three-year-old daughter was delighted with my choice in a life partner; she named him “Big Daddy” due to his height compared to her biological father. 

After our honeymoon, we returned to our jobs. I was working as an RN in an outpatient hematology/oncology practice and teaching in an LPN program, and my husband worked across the street from the clinic as a hospitalist physician. We celebrated our daughter’s fourth birthday in July and adopted our first family pet in August — Libby, a rescue dog. A wonderful addition to our family, Libby had soulful eyes and a patient, pleasant demeanor. It was a busy, beautiful life. 

Fall and Winter, 2013

I started the fall semester of graduate school days after we brought Libby home. I had developed left axillary discomfort but attributed it to carrying my daughter or perhaps picking Libby up. One evening, in the shower, I felt a searing pain in my axilla while drying off. I palpated a cord-like structure and in a surge of nurse stubbornness, was determined to find its origination point. 

As I probed along the cord, I felt a rubbery, mobile lump near the left upper outer quadrant of my breast. It felt like a lymph node, so I thought little of it. The next day, I went to my annual gynecological exam and mentioned it to the nurse practitioner. She too thought it was likely a lymph node but ordered an ultrasound to set my mind at ease. 

I went the following day for the ultrasound.  I watched the screen as the ultrasound probe glided down my left arm toward my breast, and then — I saw it. An image resembling a comet with two tails. Instinctively, I knew. The ultrasound technician quietly excused herself, and I sat up and began texting my oncology nurse coworkers. “Pretty sure I have cancer,” I texted. Incredulous, several texted back. “It’s probably nothing!” The rest of the day still felt like a dream. 

The ultrasound technician came back and said the ultrasound had shown “something,” and the radiologist had ordered a mammogram. Still in my gown from the ultrasound, somewhat slimy from where the ultrasound gel, I walked down the cold hallway to the mammogram room. After moves that would likely impress a contortionist, they finally were able to get the portion of my breast-meets-armpit in the optimal spot for imaging. 

I saw a video game-like creature on the screen after I asked to view the image that had been captured. The mammogram technician said nothing. I was again taken down a cold hallway, and the radiologist himself appeared. We mutually recognized one another from the hospital where I had previously worked. We exchanged pleasantries, but I knew what was coming next. “We found something on the ultrasound and mammogram and would like to perform a biopsy.” I quietly replied, “I thought you might.” 

We discussed scheduling. My second live class of the semester was the next day, Advanced Health Assessment and Diagnostic Reasoning. I explained that we had been told that we could only miss if we were extremely ill or dying, so if there was any way to get the scheduling done today, that would be ideal. He scheduled me for later the same afternoon. 

Feeling numb, I left, but at the same time oddly at peace. When I arrived home, I found my husband of three months weeping in our home office. I rushed to comfort him. The same radiologist had called him to tell him that there was a high suspicion of malignancy. I remember saying as I hugged him, “Don’t worry. Everything will be ok. It’s all going to work out.” But I didn’t know that for sure. 

We went to a fast-food restaurant for lunch, but I hardly touched my food. My husband went with me for the biopsy, and the radiologist who performed the procedure was a former classmate of his in medical school. They exchanged awkward pleasantries while I was lying on an exam table, preparing to have my biopsy performed. My husband was escorted to the waiting room. Before we left, the radiologist told us that it was highly probable the cells were malignant, but they would call the next day to confirm. 

I called the oncologist with whom I worked with to let him know. He ordered scans for the next day, “just in case.” He told me, “We can always cancel them if the results are negative.” 

The next day, I walked into Advanced Health Assessment and told my instructor matter-of-factly, “Well I’m pretty sure I have cancer, but they’re going to call me around lunch to confirm. If I have it, I’ll need to withdraw I guess.” Stunned, she nodded. Distracted, I took my quiz and listened to the lecture. 

Like clock work, the office called just before lunch, confirming what I already knew — I had cancer. I left class, called my husband, and met him at the hospital for my scans. I called my parents, my beloved grandparents, my father-in-law. Strangely, I did not cry. While in the scanner as it scanned my chest, abdomen, and pelvis, I began to pray. I thought about my preschool daughter, my new husband, my family, and friends. I wanted to LIVE.  

My parents, who divorced when I was 18 and had not been in the same room for any substantive time in eight years, met me at the oncologist’s office and embraced one another. My eyes watered, but not because I had cancer. Perhaps this would be a turning point? Time would tell. The treatment plan was established that day — I would be completing neoadjuvant chemotherapy, which meant I would complete chemotherapy before surgery.

The next couple of weeks whizzed by, first with meeting my new breast surgeon, who also placed my infusaport the next week. My first surgical procedure. I had never had anything other than strep throat before this — not even a cavity or a broken bone! I explained to my four-year-old in the only way I knew how. “Mommy is going to be taking some special medicine through this special button.” After I arrived home from the procedure, she asked to see it and asked if it hurt. It did. I lied. “No! This is going to help Mommy get better!” Smiling, she went to play with her toys. 

Next, I completed my staging scans with a brain MRI. My oncologist called the same day. “You also have a brain tumor,” he said, “but it’s not related to your breast cancer. The way your brain has accommodated it, it has probably been there since you were a child. We will keep an eye on it with routine imaging. It is most likely an oligodendroglioma.” “Great,” I thought. The MRI had been the most annoying thing to date, with all the loud sounds. I met with a neurosurgeon at a private hospital, who agreed with routine imaging to follow the tumor. 

A friend from high school had a side job as a photographer. She came over, and we did a photo shoot before I had to cut my long hair that fell nearly to my last rib. I had it cut into a bob and I felt spunky, even though I knew I would soon lose my hair completely. I returned to the classroom and told my students about my recent diagnosis. They were wonderful, and had t-shirts made. We made plans to walk in Race for the Cure in October. 

Two weeks after my diagnosis, I started chemotherapy on Wednesday, September 11, 2013. Several of friends came, brought presents, and my husband was there, in addition to my friends who were working in the chemo room. It felt like a party, although I couldn’t wrap my head around why we would celebrate this. We went to a casual restaurant right after my treatment. Bad idea. The chemotherapy hit me while I was sitting at the table. I got up and ran to the bathroom. Fortunately, nothing happened but I didn’t eat after I returned to the table. Just to be safe.

One of the chemotherapy medications was notorious for causing myelosuppression, so I was given an injectable medication to stimulate my bone marrow. It came to the house packed in dry ice. “Fancy,” I thought. I would take it every other week for four weeks. I stood in the bathroom and injected myself in the abdomen. Later that night, I cried — not because I was sad, but because I felt as though my bones were going to shatter. It hurt to be touched, so my husband could not even hold me to comfort me. The pain was unabated by the Tylenol and ibuprofen I had taken. Finally, I fell asleep, exhausted. I awoke next day, surprised that I felt somewhat normal after the grueling night of pain. 

The 17 cycles of chemotherapy that I received became routine. After the first four cycles, I went weekly, every Wednesday. Things seemed to be going well, and I was tolerating the treatment with minor side effects. I continued to work at the clinic and the school, with minor adjustments in my duties while I was immunocompromised. I did not provide any direct patient care at the clinic, and I no longer went with my students to clinical. I walked the entire 2K of Race for the Cure and pushed a wheelchair, but never sat in it. I felt proud of myself — I was among the thousands of women who had earned the title “survivor.”

Interestingly, I had become a sort of local celebrity during my months of treatment. I was interviewed by a local news station alongside a former patient of mine. It seemed novel that an oncology nurse could be diagnosed with cancer. Friends hosted fundraisers and raffles to help cover treatment expenses and upcoming surgery. I was featured in a commercial advertising the oncology clinic, my bald head glowing. I rang the chemo bell, signaling the end of traditional chemotherapy in mid-December. I would still receive targeted therapy for the next year. 

2014

The commercial aired for the first time during the 2014 Winter Olympics in February. I received several calls that night, with excited voices on the other line saying, “I saw you on TV! I saw you!”  It was a strange feeling. I felt flattered to have so much attention but puzzled and a little embarrassed regarding “why.”  

February commenced the “year of surgeries.” I had seven surgeries that year — a skin sparing double mastectomy with immediate placement of tissue expanders, a total hysterectomy including both ovaries and cervix, three eye surgeries (one of the chemotherapy drugs had clogged all of my tear ducts), a tissue expander exchange for implants, and another breast reconstruction revision surgery. With each surgery, I would whisper a prayer that I would wake up from surgery to see another day. After all, that was a lot of anesthesia. My husband and dad did find me pretty humorous when they would visit me in pre-op, though. Midazolam (Versed) made me an instant comedian. Libby was a wonderful companion for me during my recoveries. Between surgeries, we would travel, eat, laugh, and love. Life is in the in-between.  

That summer, the celebrity status picked up again for a brief season. I was asked to speak at a cancer fundraising event, and there were lots of promotional activities. I was interviewed by the paper and was featured on TV twice to advertise the event. 

I started back to school that fall. It felt surreal walking into the same classroom in fall 2014 where I had told my instructor that I likely had cancer. It had only been a year, but I was a completely different person when I returned. I passed Advanced Health Assessment, ready to move into my specialty course work to complete my master’s degree. I spoke at the fundraising event in December, wearing a black gown with embellished sleeves, thankful to be alive and given the opportunity to tell my story. Everything was falling into place. 

2015

By early January, the celebrity status had fallen off again. I entered my last year of my graduate program with fresh determination to learn everything I could to improve care for my patients. I still went for routine scans, both for my breast cancer and my brain tumor. I traveled to Guatemala for a week that summer on a medical mission trip, grateful to be able to give back. 

Finishing my final summer semester of graduate school,  I received a call from my neurosurgeon’s office. “The tumor has started to change,” he said. I remember feeling a pit in my stomach, afraid of what he would say next. I remember asking if he thought I had time to finish my degree in December, or if it would kill me first. He said it wouldn’t, but that we needed to schedule the surgery. I scheduled it for the Monday after I would submit my last assignments.  

I completed my final presentation on Wednesday, December 2, 2015. Finally, I had completed my master’s degree! My husband and I took our daughter to Walt Disney World the next day. We did our best to celebrate the season with Mickey’s Very Merry Christmas Party, knowing that surgery was looming, but not knowing what would happen next. I had shaved my head again in preparation for the surgery, but I had been wearing wigs since my return to graduate school, so no one noticed the change in hairstyle. We flew back on Sunday afternoon, and by 5 a.m. on Monday, I was in pre-op, waiting for brain surgery. I was incredibly nervous. Brain surgery seemed so much scarier than the other seven I had in 2014. I said another prayer.  

I woke up in the surgical ICU, relieved that I had survived my scariest surgery to date. I had a quick recovery with no deficits. The pathology confirmed what had been seen on imaging, a slow-growing oligodendroglioma. Any neurosurgery provider would be disappointed in me to read this, but I drove within a week as my grandmother needed to go for an urgent appointment and had no one else to take her. I took my Keppra as prescribed, and stopped when I was told I could. I was not recommended any further treatment, and life went on. 

2016 – 2018

The next couple of years were fairly uneventful. I worked hard and played hard, as much as my roles in academia and clinical practice would allow. We traveled as often as we could. I enrolled in a doctoral program in the fall of 2017. My daughter continued to grow up before my eyes into a smart, funny, sassy, beautiful girl. I went to all the field trips I could, as I knew that those years would go by quickly, and they did. We adopted a second family pet — another rescue dog named Brodie. Looking back, I didn’t fully appreciate all those experiences. It’s easy to take little moments for granted, but life is in the in-between.  

In the fall of 2018, one of my routine imaging scans showed new activity in the surgical cavity in my brain. The oligodendroglioma had grown back, or rather, it had become apparent on that scan that it was never fully resected. I went for a second opinion out of state and was told that I would likely die of something else before I died from the brain tumor. While there, I met with a neurooncologist who offered me chemotherapy and radiation. I declined, as I had just been told that I would die of something else before I died of the brain tumor. Why would I want to sign up for that again? No one, not even the neurosurgeon or neurooncologist, told me that it was actually cancer, and not just a tumor. I had been told that even if it ever needed to be removed, I would not need systemic treatment. So, I went back home, and life continued.

Spring 2019 – Winter 2021

Before I went for the second opinion, I had talked to my advisor in my doctoral program about the possibility of needing surgery, pending the results of my visit. She recommended that I take only one class. I agreed, but that meant that my next opportunity to resume coursework would be in 2020 as they only offered courses once per year. I was scheduled to graduate in December 2019, but I was ok with delaying a year. The remainder of 2019 was uneventful; we enjoyed the extra time I had as I was not taking any courses in summer or fall. Life is in the in-between, remember? 

When I e-mailed my advisor in late 2019, I received an automatic reply that said, “Please contact (name of other faculty) as your new advisor. I am no longer with the university.” I learned that in my absence from the program, most of the faculty had left to pursue full-time clinical practice. My project that I had been working toward was no longer going to be permissible as the rules had changed during my sabbatical. I was going to have to restart the clock on my entire project, and there was not a clear answer from the new advisor on when I would be finished. I transferred to UAMS to complete my degree, as I was able to receive a definitive answer on a graduation date but lost several credits because of the transfer. It was worth it, though. I could see the light at the end of the tunnel. I enrolled in classes in spring 2020, and I would have my doctorate in May 2021. 

Cue COVID-19. Life, as everyone knows, and perhaps shudder to remember, became very different, seemingly overnight. I continued to take online classes and pivoted to online instruction for my students. We developed decontamination protocols for when my husband would come home from the hospital to prevent our daughter from catching a virus that was poorly understood. I grocery shopped with a mask and gloves during off-hours. It was a drastic change of pace from what we had grown accustomed to in previous years. Our travels came to a screeching halt. Everything slowed down, in a sense. But there were some beautiful moments as well. I learned that I enjoy bird watching. I learned to cook several foods from scratch. I learned that a slower pace is not the worst thing in the world. Remember, life is in the in- between.  

In early 2021, my grandmother began declining significantly. She had been on dialysis for a year at that point. My Nana was my best friend, in every sense of the imagination. She was my encourager, my confidant, my road trip companion, my babysitter. She died in March, and I felt the world collapsing beneath me. I had to forge ahead because of work responsibilities and all the remaining tasks before graduation in May.   

May — it was finally time to graduate! I longed for my Nana to see me graduate; she may have, just on a different plane of existence. My husband did the honors of hooding me at home during my Zoom commencement ceremony. Some of my family members were at our home to celebrate. It was a bittersweet day; I was thrilled to be finished, but I was also missing one of the most important people in my life to celebrate with me.

Late summer, I began acting in ways that were out of character for me. I initially attributed my mood to be grief. In hindsight, my husband and I should have known something was wrong. One day in early fall 2021, my boss called me after a series of incidents that were very unusual given my past behavior and performance. She asked when my most recent scan had been. I realized it had been two and a half years prior; I had fallen behind on routine scans during COVID.  

I went for my scan in early October, not expecting anything drastically different, given the previous slow rate of growth. When I received the report, I immediately called my best friend. She was living in Houston and was, coincidentally, married to a neurosurgeon. He asked me to send my images. He informed me that I needed to be seen, sooner rather than later. He was instrumental in getting me to MD Anderson Cancer Center, a place that I have grown to love. I was told that I did in fact have brain cancer. Similar to my breast cancer experience, things moved so quickly that it was a blur. I was put through a battery of tests, moved from clinic to clinic for evaluation. They left no stone unturned in my preoperative workup. It was a well-oiled machine. 

Due to the tumor’s size and location, I was told that there was a possibility that I would be unable to speak or move, at least temporarily. I was terrified, and I felt terrible that my husband was going to have to be in alone in the waiting room, as COVID was still going strong at that point. We were far away from home, far away from our primary support system. 

I underwent an eight-hour surgery for gross total resection on November 11, 2021, the day after his birthday. We went to dinner on his birthday with my best friend and her husband, celebrating him, but not knowing what was next for me. I tried my best to stay positive. There was a question of whether I would need to be awake for the surgery. Thankfully, I was under general anesthesia the entire time, as the surgeon determined that it might cause too much swelling if I was awakened during the surgery. 

I awoke in ICU and was reportedly combative at first, coming out of anesthesia. I was having difficulty with word finding, but being proficient in sign language, I was frantically signing to my husband who did not understand anything I was saying. He got mom on FaceTime; she was able to decipher what I was trying to say. A couple of hours later, I was talking but still having some word-finding difficulties. Miraculously, I was able to move all of my extremities and follow commands. After a couple of days, I moved to the floor for my continued recovery. I was able to walk to the bathroom with standby assistance. I was discharged home after four days of hospitalization and felt pretty good! 

Things were going better than planned. I returned to MD Anderson a few weeks later to receive the treatment plan from the neurooncologist. I also met with the radiation oncologist, who discussed the pros and cons of proton therapy versus photon therapy (traditional radiation). As we did not have a proton center in Little Rock at that time, and the recommended course was six and a half weeks, I opted for traditional radiation therapy at my local cancer center. I started radiation two days after Christmas. 

2022

I sailed through radiation with no side effects. I started chemotherapy the following week after I completed radiation. I tolerated the chemotherapy fairly well in terms of energy and quality of life. However, my liver function tests had started to rise, and my blood counts fell. In the end, I was only able to complete three of the six recommended cycles of chemotherapy, which the neurooncologist told me was the average number of cycles that most patients could tolerate. I continued to work throughout the course of my treatment, and all things considered, I had done remarkably well. I even published a manuscript during my treatment, using my precious Nana in the case study portion. I returned to working on campus in late fall of 2022, gained a new colleague in my specialty, and my scans were clear. Life was good, and I was incredibly thankful. 

2023 – Present Day 

In 2023, we made up for lost time with travel. We went somewhere nearly every month, sometimes two trips! I received two grants, implemented a new teaching style with my new colleague, and presented the findings at several conferences. I published another manuscript and started working on a third. I returned to clinical practice. I took my daughter to figure skating classes. I ate, drank, laughed, and loved. I LIVED and continue to do so; there is still so much I want to accomplish, see, and do. I try to be more cognizant these days of the little things and more intentional to savor them. I’ve lived to see my daughter blossom into a lovely, intelligent, good human. I celebrated my ten-year wedding anniversary with the love of my life in May, complete with a string quartet concert and reception. My latest scan in January 2024 was still clear. I’ve been told that the gross total resection, radiation and chemotherapy may have reset the clock for approximately 10 years. Only time will tell. In the meantime, I plan to continue to enjoy this beautiful life while in the in-between.

Maeghan E. Arnold, DNP, APRN, is an Assistant Professor and the Adult/Gerontology Acute Care Nurse Practitioner Specialty Coordinator at the University of Arkansas for Medical Sciences College of Nursing. A native Arkansan, Dr. Arnold lives in Little Rock with her husband, Dr. James A. Arnold, her daugther, Meredith, and two rescue dogs, Libby and Brodie. She enjoys time with family, nature and travel.

By John Graham-Pole

Maybe I don’t need a doctor. I could just 
come back and get you to do another picture.

Rachel likes to spend night times in our emergency room — not as a patient though. She’s an artist with a successful downtown studio. It’s just that she finds herself high as a kite after a twelve-hour spell at her canvases and has a hard time settling to sleep. Sometimes she can come down enough by creating funny collages. She keeps a store of old magazines and thumbs through them till she happens to come across two images that make a jokey juxtaposition, the more absurd the better — like a boy in bathing trunks looking up from the bottom frame at a runaway railway engine in the upper frame passing right over his head. It looks exactly like nothing’s keeping them apart. 

But more often than not, shortly after midnight she’ll take herself off to our ER a mile from her studio home and set up her easel in the waiting area. She can count on always seeing a few folk there, some of them waiting most of the night to be triaged before seeing one of the overstretched doctors. She’s come to know that word triage pretty well. She looked it up once and found it’s been military parlance since the 1930s for assessing the severity of battlefield wounds. Medicine’s fond of borrowing war images to describe its work, so triage has come to describe an ER nurse’s quick assessment of each newly arriving patient to prioritize who needs the most urgent help. 

For Rachel this is an ideal “studio away from studio,” given that patients have only desultory conversation with fellow sufferers and short naps in unyielding plastic seats to while away their waiting hours. She chooses subjects to sketch who simply catch her eye and donates her work to whomever she’s picked out. She’s never met anyone who objected. This particular early morning, she’s just setting up her easel in her customary corner when in bursts a maybe-seventeen-year-old—unkempt clothes and eyes rolling like a maddened horse. He stops in the center of the room, stares about him muttering, then starts pacing in irregular circles. He’s apparently oblivious to the curious looks of the other occupants, who suddenly have something to divert them. Up to that point, Rachel had been planning to sketch a collage of the family of two bleary, but wide-eyed, grown-ups and two school-aged children stretched out asleep head-to-toe on a bench. 

But the abrupt entrance of this young man grabs her attention. She’s asking herself if he’s an addict looking for a fix, or simply worse for drink. He doesn’t seem to be hurting physically but he sure ain’t happy. Is he dangerous? She eyes him a few more moments, then starts outlining a preliminary sketch on her pristine canvas, trying to catch the agitation in his steps, the to-and-fro twisting of his torso, the sudden swirls of his head. His contour begins to jump out from under her brush as she fills in the outlines. 

As he turns for the umpteenth time the boy stops abruptly, apparently aware of her steady focus upon him. And as she looks up over the top of her easel, Rachel realizes she’s made contact. She wonders briefly if he’s going to turn belligerent, but he simply studies her then edges towards her with no hint of threat. Though Rachel has never encountered anyone who took exception to her quiet daubing, this could be a first. She unwittingly grasps her brush tighter, as though it’s a weapon she could use to defend herself. By now he’s drawn within a foot or two of her easel and has halted mid-stride. He’s still breathing fast and still has that bewildered look in his eye, but he’s noticeably calmer. She slows her own breathing, lets her eyes drop back down to her canvas, loosens her grip on her brush, and resumes her work. When she looks up again, the boy’s once-wild stare is now one of simple curiosity, and it’s like a game she played as a young child. When she looks down, he feels free to edge closer, trying not to let her catch him moving, then stops abruptly when she glances up. He’s now close enough to her to see the beginnings of his portrait outlined in black with as-yet-unformed daubs of color within. 

“That’s me you’re painting?”

“That’s right.” She keeps it nonchalant.

“What you up to? I mean painting and all that?”

“I often come here. I like it. A lot of the folk I paint seem to as well. They spend a lot of time waiting, some of them, so it gives them something to look at. I usually give them their portraits if they want them.”

He’s silenced for a moment, then, “I just came in here to get my meds. I have to take ’em, otherwise I get real anxious an’ all.” He’s starting to display some of his earlier agitation. “The doctors say I mustn’t stop taking ’em, but I ran out yesterday and I couldn’t get hold of anyone in the doc’s office.”

Now he’s so close that Rachel can see the sweat on his cheeks and neck and the way his shabby tee shirt sticks to his chest. 

“You mind me doing your picture?”

“No. No.” He’s getting self-conscious, making to smooth his hair straight.

“Better if you just relax. I don’t want you posing for me! Go on pacing if you want. Just take it easy.”

“Okay. Cool.” 

He backs off a little, looks about as if for approval, and restarts his pacing, but with slower and more even strides. Every couple of turns he’s back to gazing over at Rachel’s handiwork. The third time, he draws up sharp. 

“Hey, that’s really me. Yeah, you got it. Cool.”

“You think? You like the look of it?”

“Yeah. Yeah. So you do this for a living, kind of?”

“Well, I don’t make any money here in the ER! But yeah, I paint for a living.”

“Wow!”

He’s clearly blown away. Meeting a real live artist who makes a living at it is too much to grasp. 

“So what kind of pills did you run out of?”

“Nerve pills. I get real upset and jittery without ’em. Like I said, I’m not s’posed to miss any or I’ll end up in the hospital.”

“Well, you seem to be doing pretty well right now. You think maybe you could last till morning? Doesn’t look like things are moving too fast around here. But I’d love it if you’d stick around so I can finish your portrait. Then you can take it home with you.”

“Okay. Hey, maybe I don’t need a doctor. I could just come back in here when I need to and get you to do another picture.”

John Graham-Pole, M.D., a retired professor of pediatrics formerly with the University of Florida, co-founded the Center for Arts in Medicine, the Shands Arts in Medicine, and the pediatric bone marrow transplant unit, all at UF. A prolific writer with three novels among his literary contributions, Dr. Graham-Pole also co-founded HARP: The People’s Press, dedicated to publications on art for healing and health equity. He lives in Nova Scotia, Canada.

By Bowen Dwelle

My friend Meredith always had a knack for finding places where rent was optional. I was on one of my early trips to New York City, summer of ’97 I think, staying with her and another friend from college in a fourth-floor walk-up on Second Avenue near Eleventh—and the owner had just disappeared. Not quite a squat, like the occupied warehouses that I knew of in San Francisco and also in Italy—andiamo al centro sociale!—but nobody was paying, and when it rained it came in right through the roof. I have a photo of the three of us on a sunny spring day there in the East Village—my buddy Mark has got on a pair of Doc Martens and a T-shirt from the Beastie Boys’ first tour, and, sorry to say, I’m wearing my goofy West Coast Teva sandals on the streets of NYC. 

Mark is a bit ahead of us walking up the avenue. Meredith, sweet friend that she was, turns and asks me, “So what happened with Samantha, or Kristen, or was it Gretchen, or—which one did you just break up with?” I watch someone roll through the intersection on a bicycle, hands off the bars, just cruising, and then turn back to her. Meredith had long, wavy, red-blonde hair and green eyes, cutoff jeans, and the old Pentax SLR that she carried with her everywhere those days, loaded with black-and-white. She might have been the first woman in my life who was a sister from the start. “You know how it goes with me,” I said, “but I’ll tell you right now, I’m gonna be married with kids by the time I’m thirty.” She gave me deadpan Detroit—“Really, Bobo?” and I just said, “Yes”—feeling convinced enough myself, in the moment. She smiled back at me and said, “I can see that. I can see that happening,” and I think she was doing her best to conjure it up for me as we carried on, north toward Union Square. 

We were both the same age, but to me she had a maturity that I longed for, and I looked up to her like an older sibling. In telling her that I would soon be married with children, I was the one trying to cast a bit of a spell. Becoming a father was something I’d absorbed as part of what it meant to be a man, but I had no idea what it might actually mean. I had no idea what it felt like for my own father to be a father, how or even if he decided to do so, or whether he ever talked about it with anyone—because I’d never talked about it with him, nor with anyone else. My parents were high school sweethearts who paired up to escape Long Island—and I was born not all that long afterward, when they were just twenty-five. I know now because I’ve asked since that they didn’t have much of a conversation about it. Once they’d found a place on the West Coast, they didn’t get in the way of what came naturally, and they were young parents with two kids under five at the age that I was having this conversation with my friend from college. 

Kate and I got together twenty-odd years later when I was forty-six, and she was younger enough to still be very much in her years of prime fertility. We did have some conversations about our intentions as we got together, but we left the question of children mostly aside to begin with. Things hadn’t become all that much clearer for me since my sidewalk talk with my old college friend. My feeling along the way had been and remained that if I was with the right person, then I could be interested in having kids. I no longer felt not ready, and sometimes I did in fact feel excited about the possibility of starting a family, but I didn’t feel clear that I wanted kids of my own accord, regardless of whom I was with. 

I guess that some people do just know. That wasn’t me, and I felt ashamed for not knowing, for not being clear, and of the slowly growing feeling that it just might be possible that I didn’t really want to have children at all. What little I heard from other men didn’t help much—mostly that “you’ll never feel 100 percent ready,” and that “there’s no right time” but that “everything changes” once you do have kids. That potential loss of control, that an experience would take over my direction and feeling in life—I have to say, that never sounded at all encouraging or interesting to me. 

In early 2018, Kate and I had been away in Japan and then returned to San Francisco for the holidays, and we were sitting in the living room one weekday morning talking about the coming year. The room around us was all strong colors—big, blocky lounge chairs in royal purple, my painting of a hot-pink, psychedelic Martian landscape above the nonfunctional fifties fireplace, and the bright splash of her yellow rain boots by the door. We sipped black coffee and ate toast with almond butter, starting our day together before she went to catch the ferry to work across the bay. Kate looked up at me over her coffee and said, “I’m thinking about having my IUD removed.” 

It’s not that what she said came as a surprise. We’d been talking more about starting a family, or, at least, there had been moments when it had begun to seem possible—and many of those moments had come from my own feelings of joy and openness and wanting to expand further into love with her. Even in those moments, however, I didn’t have enough clarity of my own feelings to make any movement forward. I felt open—in those moments—but when it came to thismoment, I felt a cold fear rise up in my chest and become heat as it traveled to my throat and face. 

By that point in my life, I was fortunate enough to have earned some measure of the freedom that I’d been working to achieve since I was just a kid myself. I knew some men who were happy as fathers—and plenty of others who were conflicted, beleaguered, beaten down, burdened, and envious of my freedom. I had close friends who were mired in endless, vicious, expensive divorce and custody disputes, with their children caught in the middle. Free enough but still not in the clear, I had only very recently achieved some measure of stable mental health, and I still wasn’t certain that I’d be able to handle the pressure of being a father, or that I’d want to share my relationship with my partner with children. 

Sitting there in the morning sun, beautiful in her hopeful openness, she asked, “How do you feel about that idea?” and all I could do was gulp, “Terrified,” as I scanned right, past the view of the bay, my eyes landing on the front door. The fact is, I had already found myself thinking—and it would be more accurate to say something like screaming—silently, of course, inside, to myself, “Get me out of here!” all too often in the preceding weeks, as I tried again, and again, and again to reconcile my fear and uncertainty with the fact that I was happy with many aspects of our relationship. Comfortable and content, and also in a stone-cold panic—I’m sure you know the feeling, one way or another. 

I know more now about the phenomenon of cognitive dissonance, the feeling of discomfort—pain, really—caused by acting or behaving, that is, being in a way that isn’t aligned with how I actually feel, but at the time I still wasn’t often able to see that as it was happening. I’d been living in that dissonant state for so long, in so many ways, that I’d gotten used to feeling disconnected and in conflict with myself, and not quite knowing why. I know now that this is what confusion feels like, and I know now that I had let confusion in at many times in the past, and that it was almost always in relationships, although it’s also true that I let confusion in in a much broader way from the time I started drinking and using drugs in my teens. 

Each time I pushed closer to the possibility of having children, I was running an experiment on myself, trying to find out how I actually felt by trying it on a bit more. Let’s see how this feels is a perfectly reasonable strategy, but it sure helps if you’re able to take note of how it actually does feel, and so I’d often get myself into situations and then discover that I didn’t quite want to be there, without really processing my feelings and integrating them into my sense of self. 

So many times I had felt that something was off, and yet didn’t have the courage or the clarity to ask myself what that something was, or to act upon it, and so I couldn’t understand how I could be experiencing all the good feelings of togetherness and also, at the very same time, feeling like I should run straight through the front door. Confused, and mostly blind to my own internal state, I kept running the experiment over and over and over. 

Just as Chris Ryan describes himself in Civilized to Death, “I was an angry teen,” not only with my parents for their passive neglect, and with my father for his failure to speak to me more directly, but also because of “the dawning realities of adulthood”^[1]—of “regimentation, meaningless work, and ever-increasing isolation.” And, it’s still hard to admit, but part of my anger was with the idea of having kids. The unspoken message that I received about the role of the father was the traditional picture of the man as provider, meaning that I would have to earn enough money to support a family to earn the right to have a family. 

I already knew this on my first date—the man pays, even if the man is still a boy. Although of course I know now that it’s quite possible that I wouldn’t have necessarily had to be the full provider, at the age when all of this began to come into consciousness, it seemed clear to me that everything I ever made would be given over to having a family, and that would take precedence over anything else. 

This whole idea of having to give up whatever I managed to carve out for myself made me angry from early on, and although I became less angry over the years, I also became less and less interested in giving up my freedom. What came along with that was an increasing awareness of the sadness that comes from having chosen not to become a father, even though that is the choice I have made. 

I have chosen not to have children, and I am grateful every day for the freedom that this allows me—and, not every day, but often enough, if I allow myself to wander toward the small orchard that my father was planting one day outside the farmhouse where we lived when I was a small boy, I see the hole that he dug there, and that I climbed into. That hole, two feet deep by three feet across—that hole meant for an apple tree, or whatever it was that would grow in the short growing season of 44° north, ten miles inland from Camden, Maine—I feel that hole in my heart, because I know that I am missing something irreplaceable, incomparable—and not irreparable, but that won’t be filled in my present lifetime. 

I miss the boy who never was. That boy is me, and he’s also the boy who would be my son. That hole in the ground—I don’t remember if a tree ever grew there. I just remember a boy—little me—standing there, waving out from the bottom. There’s a hole in my heart like that hole in the ground, and it’s a hole that I do have to live with. It’s part of who I am, a man who is not a father, a childless son, a single Tom, out on his own—and again, it felt like my choice, but as much as I made that choice for freedom, it’s also true that I have made that choice because I wasn’t prepared, and because I was hurt and damaged, because I didn’t know how to love, because I was afraid, because I had no one to talk to, and because I felt that I had to protect my precious self. 

Looking at photos of myself as a boy, I’m mostly alone. There’s nobody else in the frame with me waving from that apple-tree hole at three, nor at five staring into the fire I’m tending on the beach. I’m alone at eight jumping between boulders in the high Sierra, and I’m alone at ten riding my bike in the park in San Francisco. I know that I wasn’t always alone, but in those photos I see that my young boy face is held tight as I look away to the left. I see a boy who’s getting used to being by himself. As my parents separated and then divorced and my sister became more and more of a force of chaos in my teenage home, I just left—and really, starting then, I gave up on the whole idea of family. 

The seed of fatherhood was never planted in me, or it was stunted, and twisted, and only grew small. Only recently have I gained some awareness of the part of me that could or would be a father, what he feels like, what he loves, who he would have been. 

We don’t get to do everything in life, and I’m not working up to a revelation about how I’ve finally changed my mind. I’m not trying to go back and live a different life, and I don’t want anyone telling me that it’s not too late. I’m happy where and who I am—and I’m here to tell the truth. Sometimes I cry and cry for the boy who never was. I grieve his loss, and the pain that led me there, just as I celebrate my freedom and the person who I have become. 

“To be childless may be seen as freedom, but for many men it’s also seen as a failure”^[2]—and it is a failure, not so much on the part of individual men but of our culture as a whole. As Warren Farrell has written, “…as men discover they have been deprived of their fathers, they start asking if they are also being deprived of being fathers,”^[3] and while he meant that a man can be deprived of actively fathering his own children by working outside the home to support a family back at home, it’s just as true that the same patriarchal system is depriving many men of the opportunity to be fathers at all, by way of the same omissions that I experienced. 

Although the model for manhood is much broader than it used to be, my experience is that it still generally includes being a husband and a father. While there is plenty of support out there for fathers, there is little discussion of—let alone support for—childless or child-free men, even though—and this may surprise you as much as it did me—only 60 percent of American men become fathers^[4] in their lifetimes. Sixty percent is not that much more than half—and although just about the same proportion of women never become mothers,^[5] there is far less conversation and awareness about men who don’t ever become fathers. 

A 2020 paper entitled “When Men Choose to Be Childless”^[6] echoes much of what I’ve felt about having children. The men who were the subjects of the study cited both a “lack of conscious decision-making” and a conscious decision to situate themselves “outside the norm,” as well as absent fathers and a lack of an “emotionally open and frank conversation about having children.” Many of the men cited their fear of losing freedom, and also fear of the commitment to “support their family financially.” Although they do note their subjects’ desire to “form an identity in resistance to the dominant discourse,” the authors stop short of attempting an analysis of the root cause of that desire to resist.

I know from my own experience what it feels like to be so much “in resistance” to the environment in which I find myself so as to choose not to reproduce. Of course, there are a wide variety of reasons that any individual may or may not end up having children, but given that fully four out of ten American men do not end up becoming fathers,^[7] and that the suicide rate for men is roughly four times that of women,^[8] the stark truth is that many men are choosing to end their family lines, one way or another. 

We’re resisting the dominant discourse because we have created a world that is trying to destroy us. As much as men have had a hand in creating a culture which is still usually—and fairly—considered to disproportionately benefit men, that culture is also driving us to quit our most basic biological purpose. The increasing number of men who do not fulfill their first-order biological imperative as human animals is a direct and quite literally life-ending legacy of our patriarchal culture. Even though we know that we are foregoing the single most powerful built-in mechanism for personal fulfillment, and therefore, in a way, sort of asking for it in terms of lifelong happiness and even personal health,^[9] an increasing number of men see the evidence of what it is actually like to be a father in our society as enough to convince us to refuse that path. 

The stereotypical fear of commitment often ascribed to men doesn’t come so much from some sort of lack of stick-to-itiveness that is innate to masculinity. In fact, it’s quite the opposite. It’s not that we are reluctant to commit because we are men; it’s that some of us are unwilling to commit to the untenable bargain offered by patriarchal society. As Gerda Lerner called it, the “unwritten contract for exchange”^[10] of protection and financial support for love is a deal that, if it ever did serve us, served a past that is now long gone. In today’s world, this paradigm is finally starting to break down, but it has yet to be replaced by a cultural framework that offers men the identity, security, support, and knowledge of self required for more of us to want to become fathers. 

Patriarchy taught us that we are not really men until we accumulate wealth, marry, and have children. We have to earn the right to call ourselves men, and so, by these same criteria, we are not yet men until we become fathers. The catch is that if I have to become a father to become a man, then I have to give up much of my still-unformed self in service to family in order to become that sort of man. While that may well be the existential reality of the cycle of human reproduction as expressed in the formation of the psyche—that we must trade away some portion of freedom in order to become fully adult—if our culture does not prepare, surround, and support us in this process, then it can become a binding conflict. If some of us won’t commit to what patriarchy has to offer, it’s for a damn good reason. 

Being with Kate was the last time that I was faced with the choice of fatherhood, but certainly not the first. I’ve been almost married twice, and almost a father quite a few more times than that. Like most men, I’ve been in relationships that could have become families, and in others where pregnancy was an exciting possibility, a threat to be avoided, or a crisis to be dealt with—all of those and more. A couple of years beforehand, already in my mid-forties, I had gotten involved with a woman roughly my own age, someone who was both charming in her creative freedom and also rather wildly—and attractively—disconnected from the everyday world. The subject of birth control never came up, and the unfortunate result was that she did get pregnant. 

We were already headed in different directions by then and only seeing each other occasionally. On hearing the news I was struck with concern and flew across the country to be with her. At first I was excited by the possibility, conflicted. and then terrified—and then, just a short while later, I found myself certain that while by that point in life I was as prepared as I ever would be to become a father, it was also clear that it hadn’t been a priority for me, and that an unplanned pregnancy was neither what I wanted, nor a sane thing to proceed with. A few days later, and without further discussion, she took matters into her own hands. By then, my brief heartbreak had already passed. Hers isn’t my story to tell. What matters most for me is that, yet again, through my actions and with very few words, I chose not to become a father.

Despite what I’m aware of missing, I’m clear that this path is the right path for this life. Although I was “open” for so long, I’ve already chosen by my actions many times over to not be a father, and I don’t need to continue to choose again and again. Being child-free is a great way to be, and it’s also true that I feel the sadness, hurt, and anger—and the missing of not having my own children. It’s a choice for freedom, for creativity, and for light—and it’s also a dark choice that’s the result of growing up without enough truth or connection, and of the shadow of our culture, which paints an all-too-accurate, unsatisfying picture of what it can mean to be a father. 

Not having kids is not just succumbing to the fate handed down by patriarchy—it’s also a protest. It’s the end of the line for me, as it is for many other men today. It was in part my lack of a sense of self that led me to this path, and even though I can say now, and with commitment, that I’ve healed that missing self, there is still a part of me that remains missing, and that boy who never was will remain my deepest wound.^[11]

Bowen Dwelle, a graduate of the University of California at Berkeley, has been published in Good Men Project, Kiteworld Magazine, and Candy Magazine. His poetry is included in the anthology Side-Eye On The Apocalypse (Los Angeles Poets & Writers Collective, 2021). Mr. Bowen now works as a writer.

References

Curtin, Sally C. and Holly Hedegaard. “Suicide Rates for Females and Males by Race/Ethnicity: United States: 1999 and 2014.” CDC; National Center for Health Statistics, June 19, 2019. https://www.cdc.gov/nchs/data/hestat/suicide/rates_1999_2017.htm.

Farrell, Warren. The Myth of Male Power: Why Men Are the Disposable Sex. Berkley trade paperback edition. 1982. Reprint, New York: Berkley Books, 1994.

Kilmer, Val. I’m Your Huckleberry: A Memoir. Illustrated edition. New York: Simon & Schuster, 2020.

Lerner, Gerda. The Creation of Patriarchy. Paperback 1987. Women and History / Gerda Lerner 1. 1986. Reprint, New York: Oxford Univ. Press, 1986. https://www.scribd.com/document/268507687/Lerner-Gerda-The-Creation-of-Patriarchy-Women-History-1987.

Monte, Lindsay M. and Renee R. Ellis. “Fertility of Women in the United States: 2012.” U.S. Census Bureau, Current Population Reports, July 2014. https://www.census.gov/content/dam/Census/library/publications/2014/demo/p20-575.pdf.

Monte, Lindsay M. and Brian Knop. “Men’s Fertility and Fatherhood: 2014.” U.S. Census Bureau, Current Population Reports, June 2019, 70–162.

Myers, Justin. “It’s Hard to Be a Man Who Can’t, or Won’t, Have Children.” GQ UK, February 13, 2019. https://www.gq-magazine.co.uk/article/men-without-children.

Ryan, Christopher. Civilized to Death: The Price of Progress. Avid Reader Press / Simon & Schuster, 2020.

Smith, Imogene, Tess Knight, Richard Fletcher, and Jacqui A. Macdonald. “When Men Choose to Be Childless: An Interpretative Phenomenological Analysis.” Journal of Social and Personal Relationships 37, no. 1 (January 1, 2020): 325–44. https://doi.org/10.1177/0265407519864444.

^[1] Christopher Ryan, Civilized to Death: The Price of Progress (Avid Reader Press / Simon & Schuster, 2020), 149.

^[2] Justin Myers, “It’s Hard to Be a Man Who Can’t, or Won’t, Have Children,” GQ UK, February 13, 2019, https://www.gq-magazine.co.uk/article/men-without-children.

^[3] Warren Farrell, The Myth of Male Power: Why Men Are the Disposable Sex, Berkley trade paperback edition (1982; repr., New York: Berkley Books, 1994), 364.

^[4] Lindsay M. Monte and Brian Knop, “Men’s Fertility and Fatherhood: 2014,” U.S. Census Bureau, Current Population Reports, June 2019, 70–162.

^[5] Lindsay M. Monte and Renee R. Ellis, “Fertility of Women in the United States: 2012,” U.S. Census Bureau, Current Population Reports, July 2014, https://www.census.gov/content/dam/Census/library/publications/2014/demo/p20-575.pdf.

^[6] Imogene Smith et al., “When Men Choose to Be Childless: An Interpretative Phenomenological Analysis,” Journal of Social and Personal Relationships 37, no. 1 (January 1, 2020): 325–44, https://doi.org/10.1177/0265407519864444.

^[7] Monte and Knop, “Men’s Fertility and Fatherhood: 2014.”

^[8] Sally C. Curtin and Holly Hedegaard, “Suicide Rates for Females and Males by Race/Ethnicity: United States: 1999 and 2014,” (CDC; National Center for Health Statistics, June 19, 2019), https://www.cdc.gov/nchs/data/hestat/suicide/rates_1999_2017.htm.

^[9] Smith et al., “When Men Choose to Be Childless.”

^[10] Gerda Lerner, The Creation of Patriarchy, paperback 1987, Women and History / Gerda Lerner 1 (1986; repr., New York: Oxford Univ. Press, 1986), 218, https://www.scribd.com/document/268507687/Lerner-Gerda-The-Creation-of-Patriarchy-Women-History-1987.

^[11] Val Kilmer, I’m Your Huckleberry: A Memoir, Illustrated edition (New York: Simon & Schuster, 2020), 258.