My parents were at the hospital, where they’d been since early that morning. My mom was sick — the kind of sick that made her lose 20 pounds in three weeks and caused so much bile in the back of her throat she constantly felt like her molars were floating. The kind of sick that caused night sweats so extreme they were changing the sheets once, twice, sometimes three times a night. The kind of sick that made her look like a living ghost, translucent and frail, sitting on the staircase and resting her head against the wall, unable to do much else when I had visited the house the day before.
Even so, she’d been at the office the Thursday before, like the powerhouse she’d always been, seeing patients though she was sicker than all of them combined. She thought her hospital visit would be outpatient. It was stress, she kept saying. She neglected to mention her liver was failing, as well as the conviction that it was something worse. Yet as I stood in front of the refrigerator and answered the phone, I knew it would be bad. Her voice came through, weak but calm:
“I want you to hear this from me. They think I have an aggressive lymphoma.”
Over and over I remember myself in the kitchen, telling her I would drive over right away, hanging up the phone, and then crumpling to the floor. I remember how much I wanted to sob, that there should have been an emotional sensation to go with my fall to the well-worn black and white squares that lined the kitchen, Real tears, a deep low rumble in the chest, a gut wrench, anything. Instead, as I landed, I felt how I might never really feel anything ever again.
There are many wards in a hospital. There are the happy wards, with new parents and new babies. There are surgery recovery wards. There are wards where sick people have recently been admitted, before they know where they’ll be going, or even whether they’ll be going at all. Then there are the wards that are a mix of both, the sick people wards, or the very, very sick people wards. I think they’re called units now, but a unit is something we measure, something technical and removed. To ward is to protect and to guard fiercely, even if all we’re keeping safe is the illusion there’s anything we can do.
My mom was first admitted to a ward full of a mix of people, including patients who wouldn’t be there long as well as those who would probably never leave. The never-leaves were a previously unknown form of heartbreaking. They were sick and usually alone, with diseases that had eaten away at their brains and made them cry out to no one in particular. One of them, an old woman, cried out “Mommy! Mommy!” whenever I walked-ran by to my own mom’s room.
The first few days in the hospital were a mess. No one seemed to have any idea what they were doing or what was going on. There were two good doctors, but one went off duty immediately after admitting my mom, and the other was in and out of the hospital, busy at the cancer center too. A few of the nurses were nice, but others were irritated, dismissive, forgetful. Orderlies would take my mom for a procedure even though the nurses had forgotten to complete the paperwork. I’d rush the paperwork off to the nurses’ station, where one would snap at me and then, seeing the error of the forgotten paperwork, take it sheepishly. After at least one procedure, a nurse and I stood in my mom’s room, discussing when to move my mom to the oncology ward while the recovery room called me on my cellphone to ask where they should take my mom. Even in the hospital, I seemed to be the only one connected to anything, especially to the patient, my mom.
From the moment I walked through the doors of the hospital, I had assumed control of my mom’s care. My dad had been with her when I had arrived and wordlessly handed over the reins to me, in a state of near-shock. He went home to work — under my mom’s orders to finish his project for her — and took care of paperwork, did grocery shopping, tried not to fall apart.
In the oncology ward, things were less messy but much more powerfully disconnected from any real world experience. This was my world now. I spent 14 hours a day in her hospital room, the day room, at the nurses’ station. The nurses asked if I wanted a pair of scrubs.
One night, her first night of treatment when things went horribly wrong and she was too sick to argue with me, I spent the night curled up on a cot half-asleep, waking up to beg technicians to wait until morning for repeat tests they’d only just performed — to let her get some sleep, two solid hours, please. I was surrounded by people busy and working hard, but ultimately I was alone. I didn’t have anyone by my side; I was too busy being by someone else’s side.
It seems like a punchline to say I turned to the internet at my most emotionally distant, during such a crisis. But punchline or no, at 3:00 a.m., when the world was asleep and the day room lights buzzed, there was always someone awake. There was sometimes even someone awake who had sat in a room much like that day room, with someone they loved down a similar hall attached to similar tubes.
We complain about how lonely technology makes us and how awful social media can be. But this is often a loneliness of our own making. We fuel our own jealousies, don’t know how to limit our own obsessions, binge and purge. We make a thousand “friends,” though we scoff nervously at the notion of a real connection. There is nothing so worthy of an eye roll as someone using technology to be sincere, and yet on any given Saturday night there we are, a nation of us, checking in and tweeting our hearts out in hopes that someone will know where we are, and respond. It’s not technology that’s making us lonely. Most often, we just are lonely. What we do with technology is up to us.
I have to remind myself of this. The levels of technological loneliness I’ve experienced are too often self-inflicted wounds. There was the loneliness of 5:00 a.m. when a hospitalist with a loping gait, himself at the tail end of a long shift, beckoned me down a hall to talk about what I thought my mom meant by her do-not-resuscitate orders. Or the hours I spent in the waiting room of the cancer center as she dozed in a treatment room, or when we were back at the hospital, watching her sit with no immune system in a sterile room for weeks on end, awaiting a stem cell transplant. Or simpler still, day after day spent at the house, trying to figure out what she could eat that didn’t taste like cleaning solution one week, burning rubber the next, and something far worse the week after.
Throughout it all, I was lonely at my core, alienated from myself, steady but adrift.
It was nothing short of a blessing that a best friend was here on a trip when my mom was admitted to the hospital. My friend and I both felt a powerful gratitude for the timing, as much as anyone can be grateful when cancer makes its appearance. I was glad for the support she offered, for her willingness to help in ways unasked yet deeply needed, for her mere presence briefly at nights when I would leave the hospital to sleep. She, in return, was glad to have been here rather than 10,000 miles away when I needed her most. To have not been across the globe feeling unreachable, helpless, powerless. She had been here for a week or so, staying in the apartment I shared with my then-boyfriend, when my mom was admitted to the hospital. On the day my friend came with the notary to be a witness as my mom signed her will, my mother, true to form, reached up from her bed and patted my friend on the arm. “I’m sorry I ruined your vacation,” my mother said.
But by the time the first week of home care rolled around, my friend had to return to Australia. And within days of the diagnosis, and as the months rolled on, the boyfriend broke the unspoken promise of love. Even given a list of tasks — clean the house, make sure fresh food is available, offer to visit across the bay when necessary — he did none of them, seemed at a total loss for what to do. The constant presence of family crisis and my dedication to it caused him to burrow further and further into his own life. It might have been painful and heartbreaking for me under more normal circumstances, but instead it made me angry, borderline resentful. Love would have been wonderful, but even more than that I wanted to lean into something steady that itself would not inch away. During the months of her treatment leading up to her stem cell transplant, I slowly moved in with my parents to take care of my mother. Shortly thereafter, I ended my relationship so dispassionately it surprises me still.
There is only one way I have ever been able to explain how I felt that year. It was a graying of emotions. I suppose a little like the blues or the mean reds, but more like trying to click on something and finding it’s no longer available to you. It’s been grayed out. Food had little flavor. I stopped listening to music almost entirely, something I still haven’t entirely recovered from. Some days I wondered if I’d ever be interested in sex again, or even in being intimate at all, in touching and being touched, in letting someone be close to me emotionally, because of what it would require and because of what I would need to access inside myself. After nearly a year by my mom’s side, I remember having an amazing kiss with someone in whom I was otherwise uninterested. He wanted me to come home with him and when I demurred, he asked me why. “It feels good enough just to remember what ‘alive’ feels like,” I told him.
I was in charge of something bigger than anything I had ever imagined because it wasn’t anything I could have ever imagined. Not until I was suddenly, unavoidably there. How do you imagine being in charge of a deathly ill parent?
Emotions were inconvenient. They weren’t even a luxury. Locked up for another time, they were to be brought out when breaking down wouldn’t derail me from staying focused on moving forward. Emotions would get in the way of being eagle-eyed at every stage, watching six spinal taps unflinchingly or knowing how to handle the hospital staff when major errors in treatment were made during the chemo for her stem cell transplant. I had to disconnect, if not from the world then at least from myself.
I wanted to connect to others in order to have someone to rely on. I imagined what it would be like to have local friends leaving food on my doorstep or dragging me out to take a break, checking to make sure I was taking care of myself. But the truth was that my social network was small. I had only recently returned to live here after many years away, had been distracted by work, and was fortunate to have a handful of incredibly dedicated friends who just happened to live hundreds, maybe thousands of miles away. I had never thought of the repercussions of being so unmoored in a sea such as this.
That human connection eluded me and so I craved it. I wanted to not be so isolated in a world of chemotherapy, cancer, fear, sadness, and an inching-along dissertation.
I have no doubt there are many people who have a deep need to perform their trauma and grief. They need an audience, and there is nothing quite like the combination of performative grief and the vast reach of technology to create a sucking vortex of mutual need. There are those who create and crave grief porn. There is a voracious public interest in other people’s tragedy.
Yet even for those of who are less performance oriented, technology has changed how many of us negotiate, discuss, express, even understand our experiences, emotions, and the often exquisitely painful crises we encounter. The boundaries of external and internal, the distinctions of public and private: do we think first about how we feel, or do we put it on the internet and then understand it as it is reflected back at us? Is it possible for us to communicate our tragedies and traumas without the internet, email, and social media? Do we put it all out there for everyone to see, or do we keep it hidden to all but the closest of friends? And what of our moods — is it acceptable to let them be as grim as necessary until we’ve healed, in both our private and public worlds? Do we — should we — put on a smiling face, in real life, online, everywhere, anywhere, even as inside we are devastated?
For many of us, our online selves are some version of our “regular” selves — maybe a pared down version, maybe an idealized version, maybe no different as anything in living breathing Technicolor. Some of us will open tiny windows into our lives that offer virtually no glimpse into the back rooms. Others will only light up the windows of the parlor, where the happy, tidy feelings are. Still others will fling open a window into what seems a most private passage, only to have fooled you into falling for a locked foyer.
But sometimes, even now, I think about public mourning rituals. I think about how the Victorians treated grief, how publicly they wore it, how they wore rings made from the hair of their beloved deceased. I recall telling myself I could say something, I could document my grief. It was okay to make it public, even if it felt like a very wrong, obnoxious, and strange thing to do. I remember thinking I needed someone to do something, but I didn’t know what it was and I didn’t know how to ask.
That’s the rub, isn’t it? Under even the most ordinary circumstances, how difficult it is to tell people we feel awful, to ask for a little extra patience, to ask for comfort. So to reach through the emotional distance when the stakes are so much higher, when the cost of rejection is risking further isolation at a time when you are already floating on what seems like the last splinter of wood from the great wreck of your life — well, you know, maybe throwing a thing or two at the internet and seeing what sticks doesn’t seem so crazy.
Not everyone knows how to behave in the worst of situations. Some people will behave admirably, and some will be tremendous in ways that are astonishing. while others will disappoint, leaving you to wonder if they alone have ruined your ability to trust, especially given your current fragility of spirit. But because they are human, some of these people, in fact many of them, will be kind and generous, even if they are far away, typing, sending photos, texting, sending so much love it will astonish you. You’ll keep them with you always. You’ll forget to tell them as time passes but you’ll never forget them. They will do for you what so-called friends cannot. Even if they are not, as we like to say, here with you in real life.
Eventually, as is most always the case, my world started turning again. My mom made it through her six rounds of chemo and her stem cell transplant. She continues to endure a long recovery that has been difficult and is still sometimes painful. We have connected in new ways and disconnected in others. Same with me and my dad. Cancer continues to change everything long after everyone else assumes that, in one way or another, it’s over.
So now that food again has flavor, now that an attractive man will turn my head on the street, now that I’ll easily blare Jean Wells at full volume while driving down a sun-drenched California highway, how do I let these pieces float to the surface? When the continued effects of being a caretaker make themselves known, what do I do? I find I have again retreated into that place of fear, of pride, of projecting only strength and confidence.
This technology, the one that facilitates these human connections: it is only as human as we allow it to be.
Illustrations by Yael Levy