I’m marooned on my couch, thick with sweaters and weighed down by blankets, so cold I can’t stop shaking. An invisible band is pressing into my head like a slowly tightening crown. My heart is a jackhammer. Something is terribly wrong with me.
Take one step back and this is me a few weeks after a bad mushroom trip. Take a few more steps back and this is me one year after realizing my mother is dying, abandoning my own life, and taking over hers.
I remember the moment I knew my mother was going to die. I was walking home from work and texting with her about a doctor’s appointment.
My mother had been battling pulmonary fibrosis for years, but in the past three months her condition had worsened dramatically. She was consigned to the first floor of her house, unable to walk up the stairs. PF causes inflammation and scarring in the lungs and hers could no longer supply her body with enough oxygen. She used to wear a backpack that held an oxygen bottle about the size of a liter of soda. We’d joke, saying it made her look like a spacewoman with a jetpack, but since her decline she’d been dragging a four-foot-tall oxygen tank behind her on a trolly everywhere she went.
I was either going to save my mother or keep her comfortable until she died.
My mother is from Poland, and when I was a kid, her thick accent was an endless source of entertainment to me and my friends. But now her grasp of English sometimes made it hard to decipher her texts.
“SEVER,” she kept writing, in her usual all-caps style.
I opened the X-ray result she’d emailed me and waited for the report to load. I was almost home, but I stopped mid-pace on the sidewalk, feeling the muscles in my jaw tense up. My foot tapped as I braced myself. The Brooklyn block around me shifted into late evening, and as the diagnosis took shape on the screen the only thing lit up in the night were the words in front of me: “SEVERE FIBROSIS.”
I’d spent many late nights googling my mom’s condition. I knew exactly what those words meant. Irreversible damage. Rapidly impending decline and death.
That night, back at my apartment, I felt numb, paralyzed in a deep state of dread. I was hanging somewhere between two worlds: The world I had just come from, where my life was normal, and the future world, where my mother was dead. For days I kept to myself, dwelling inside my own intense fear and grief.
And then a plan took shape. I would move in with my mother, take over her care, and find a miraculous cure. A warrior woke up within me, and after that everything moved very quickly. I sublet my apartment, took a leave of absence from my job, and moved back to the house where I’d grown up in suburban New Jersey. I was either going to save my mother or keep her comfortable until she died. I was prepared to face either end.
Our days were punctuated with urgency and desperation. I would often sit and read a book in the corner of a physical therapy gym as my mother did a few arm stretches with a tension band from her wheelchair. On our way home, I’d struggle to load my mother’s heavy wheelchair into the trunk, always getting one spoke caught. I’d shove it angrily until it fit, not caring if I scratched and bruised the car, the chair, or myself.
My mother would often have days when she couldn’t lift herself from the bed at all, her chest heaving sharply just to get a single, short breath. During these acute exacerbations, we would rush to the emergency room to get her hooked up to a stream of steroids, antibiotics, and high flow oxygen. As these treatments grew less effective over time, one of the ER doctors suggested the possibility of a lung transplant. It was risky and unlikely to happen; the mere mention of the word transplant sent a spike of fear through my gut.
Yet, we had no other choice. We went through six months of tests, interviews, and evaluations. Meanwhile, I often fell asleep not knowing if my mother would be alive when I woke up. Silent anger at her own degrading condition kept her company those days, relieved only by moments of sobbing as she sat trapped in her wheelchair, facing the TV in the living room.
Taking care of her was an escape. It was a way of focusing my energy entirely on her, leaving behind my own pain and the often scary possibility of following my own dreams and doing the work needed to get there. I had disappeared into her story.
What my mother avoided and feared most became the only thing that would save her: the transplant. Once she was listed, there were many false alarms, calls at 2 a.m. with a potential donor match, only to be told, after rushing to the hospital to wait in a treatment room for hours, that the lungs were damaged, not suitable, not the right size.
As summer became fall and October neared, I was fond of telling my mother that she’d get new lungs for her birthday. She was so despondent those days, but my falsely optimistic prophecy would cheer her up, if only momentarily.
Then, it happened. We got a call two days before her birthday at around 10 p.m. I got myself and my mother dressed and flew out the door in under 15 minutes, throwing our already pre-packed suitcases into the trunk. In the car on the way to the hospital, with my brother trailing behind us in his station wagon, we prayed.
Everything happened quickly. The nurses prepped my mother for the surgery, hooking her up to various IVs and washing her chest with an iodine solution as my brother and I waited. The surgeon, a handsome older man with a thick Argentinian accent, elegantly whisked himself into our room, exchanged jocular words with my mother, and very casually said “It’s a go.”
The surgeon continued to quip with my mother. She asked how long the surgery would take, and he said he’d be drinking wine at home by 6 p.m. As the nurses wheeled my mother out of the room on a stretcher, I kissed her on the forehead and simply said, “See you soon.”
What followed was a long and arduous wait. Worst case scenarios and scenes of surgical complications danced through my head. As I periodically expressed these to my brother during our six hour wait, he finally silenced me.
“Renée,” he said. “Let something good happen to us.”
Finally, the surgeon called us into a tiny windowless room. With a reassuring smile, he said, “Everything went perfectly. No complications. You will see her soon.”
A lung transplant was by no means a cure; it was more like swapping one disease for another. The surgery was dangerous and meant a life of complications and medications. But she was lucky. The surgery was a success, and, after a long recovery process, my mother gained back her independence. I no longer had to buy her groceries, cook her meals, help her bathe, change her oxygen bottles, and push her around in a wheelchair.
I was finally free.
I moved back into my apartment on New Year’s Eve. That night, on a whim, I took mushrooms with some friends. In the past, my experience with mushrooms had always been provocative and expansive, but this time something different happened.
I entered a very dark part of myself. A thick blanket covered me, one that no joy or happiness could penetrate. I vacillated between that deep isolation and the immense gratitude for emerging from it and coming back to myself.
Two weeks later I experienced what I can only describe as a nervous collapse. My body shook uncontrollably; I was trembling and cold and terrified. I had no idea what was happening to me.
I lived in this physical state for months. While my body hemorrhaged, my mind responded with intense bouts of anxiety and depression; I was sidelined by flashes of traumatic childhood memories. I recalled waking up alone in an empty apartment as a two year old, crying uncontrollably and searching for my mother in the building’s hallways. Other similar memories of being left alone as a child resurfaced. Something was terribly wrong with me. I was sure I was dying.
I tried to go back to work, but it was impossible to focus as my body and mind constantly trembled with worry. I had to quit my job and disappear from my social life quite inelegantly. My mother, who was still recovering, told me to come back home immediately so she could care for me. I dropped everything once again to move back in with my mother, but this time, I was the one who needed care.
I now understood why the possibility of my mother’s death had scared me so badly; it was the ultimate abandonment. I still had a small, unhealed child within who was terrified of being left by my her.
No one could pinpoint what was wrong. I stopped seeing doctors and turned inward, devouring books on healing and spirituality. An internal voice emerged, quiet at first, but soon I stopped to listen: “You are experiencing a release.” I felt momentarily reassured by this voice and developed a cautious trust in this guidance, being led to the work I needed to do to heal myself.
I sat with my pain, both physical and emotional.
I began to dive deep into those feelings of fear and isolation that I had run from my entire life. I started to see how being left alone as a child had caused me to feel unworthy of other people’s presence and love. I now understood why the possibility of my mother’s death had scared me so badly; it was the ultimate abandonment. I still had a small, unhealed child within who was terrified of being left by my her.
The fears I’d developed from those childhood experiences caused me to do something I’ve seen many others do to compensate for their feelings of unworthiness: I gave too much. To be worthy of other people’s attention and love, I gave and gave, with little to no regard for my own comfort, safety, and happiness.
I finally understood that I had done something very dangerous in the way I had cared for my mother: I had unwittingly sacrificed my own well-being for hers. I forced myself to go to very scary and painful places with her without properly supporting and loving myself through it, simply because I did not know how. I only knew how to support others, and because of that, I abandoned myself.
Outwardly, it appeared that I had loved my mother enough to sacrifice everything for her, and that is partially true. But buried within that gesture was also a seed of cowardice. Taking care of her was an escape. It was a way of focusing my energy entirely on her, leaving behind my own pain and the often scary possibility of following my own dreams and doing the work needed to get there. I had disappeared into her story.
Over the course of a year, I slowly began to heal and regain my strength. I learned how to support myself and set boundaries. I was met with outside support in the most unlikely of places. During one of the few social appearances I made that year, I expressed to my friend that I had been wanting to move out of New York City for ages but didn’t know where to go next. A huge part of my healing had included long walks in the woods, so I envisioned myself in a place deep in the forest surrounded by rivers and lakes. She mentioned that her mother lived in southern Oregon and that she’d be away that summer. Before I knew it, I found myself on a plane to Oregon to spend a summer in my friend’s mother’s house in the woods, immersed in the wilds of the Pacific Northwest. During that time, I allowed myself to deeply rest and spend time outdoors, wandering and following my heart’s desires. I’ve since made a permanent move to Oregon, where I feel more at home with the cedars.
These days, when I text with my mother, she asks me how I’m doing. Instead of an anxious, dutiful interrogation of her current symptoms and medication doses, we’re planning a trip to Hawaii, a place we’ve both wanted to go for years. It’s a mutually beneficial exchange of support, a dissolving of the lines of caretaker and the one who needs care. In the end, we all need to be both.
WHAT READERS ARE SAYING ABOUT THIS ARTICLE
Very powerful story! Tears flowing… Thanks for sharing such an eloquently written story about a very complicated time period in your life.