I used to have a night-time routine. I would help my mother up the six stairs from the living room to her bedroom, give her a hug, and set her up in bed. Sometimes, if she was feeling particularly weak, I would bring her toothbrush to her with a mug of water, so that she could brush her teeth in bed.
I could hear the rolling stand that held her food pump against the hardwood floor as she moved around at night, to go to the bathroom. My dad had all the carpeting removed when they bought the house — carpets harbor dust and fungus that could inflame her lungs.
Years out from a double lung transplant, it was no longer the pulmonary fibrosis that was causing her pain: it was the anti-rejection drugs. The operation had saved her life, but it was far from a magic bullet. For eight years, she seemed to go from near-death experience to near-death experience: operations to remove scarring on her lungs, fungal infections, feeding tubes, inability to eat, nausea, pain. In 2019, we spent eleven straight weeks by her bedside. In 2020, the silver lining of the pandemic was that I no longer had to go into an office, and could spend most of my time helping to care for her. In 2021, on an awful Sunday evening in June, we lost her.
She fought for over a decade. Even at the end, she said she wasn’t ready to say goodbye. She still had life left. She didn’t want to leave us.
There are so many things I want to tell her; so many things I want to talk through with her. There’s so much I want to apologize for, too: she had told us, over and over again, that she didn’t want to die in a hospital. In some of her last lucid moments, she tried to remove the tubes on her arms. “This is not okay,” she said. Palliative care, which is supposed to be about making her as comfortable as possible, seemed in the end to be about making us as comfortable as possible. They starved her. I watched as my sedated, unconscious mother starved to death in a hospital bed.
This is not okay.
I feel compelled to go back to that hospital room, as if she’ll be waiting for me there. When I was still in San Francisco, I’d walk by the hospital and look up at the corner room, facing the trees on the hillside, hoping to see her silhouette.
I wish she would show up in my dreams, so I could at least talk to a version of her, even if I intellectually know it would just be my own projection. She hasn’t shown up there once, except as a brief staccato “oh my god, you guys” that came out of nowhere and woke me up like a nightmare.
The morning she died, I collapsed into Erin; I’m not ready, I said, over and over, as if it could change anything.
I’m not ready.
I will never be ready.
I came back to Britain for my friend’s wedding a year after her lung transplant. I didn’t stay long: whenever I went anywhere, there was always the fear that something would happen. But I’d ripped my life apart to come to California to be with her, and returning there made me feel at least a little bit connected to what my life had been. I saw my friends, I saw the places that used to be home to me. But rather than slotting back, there was a bittersweetness to everything. It had all changed, my life and theirs, and this couldn’t be home to me anymore. I was severed.
I gave a presentation about the indieweb at an Edinburgh TechMeetup where my laptop had frozen up and needed to be hard-rebooted halfway through. Afterwards, we all gathered at a nearby pub, and a prominent member of the Edinburgh tech scene said to me, “I wouldn’t have gone. I would have said, ‘sorry, Mum, you made the choice to move there’.” I couldn’t understand, and I still can’t. She had never met my mother. She would never understand who my mother was. And she misunderstood me if she thought I would ever say that. (Did I do the wrong thing?, I asked myself that night, and for years afterwards, over and over.)
Ma’s illness was genetic. We’ve lost five members of our family — people we dearly loved. Researchers were finally able to figure out how to identify the relevant mutation in the TERT gene, which eventually led to my sister and I getting cleared. But, of course, the science is evolving; there’s no complete guarantee that we are actually cleared. It will hover over us forever either way: we lost people we dearly love to this thing as recently as this summer, so any relief we might have felt was painfully hollow.
Holy shit, did it fuck me up.
I remember my first experience of really feeling different when I was around eight years old; the dawning understanding in my third-culture mind that people saw me as some kind of other. One boy used to drag me into the ditch at the side of the school playing field and just jump on me, as if he was trying to break my legs. The teachers at my school mocked me for having a German name; forty years later, the war still weighed heavily for them. I have wondered if they would have acted differently if they’d known my Jewish heritage, but honestly, I don’t think it would have mattered. I wasn’t one of them, was the thing; I was Other.
When I was a teenager, I became so tall that I often loomed over people. My new presence attracted yet more attention, and I grew to hate the looming hugeness of my body, this bounding form that people found it necessary to laugh at. I wished I could have disappeared. I wished I could have been normal. I fantasized that there was a magic word that other people knew that I didn’t, and if I could only figure out how to invoke this special incantation, I would finally feel like I was okay.
So when this happened, when I tore my life to bits at the hands of this terrible terminal disease, I felt like I deserved it. I didn’t feel like Ma deserved it; I didn’t feel like my dad deserved it; I didn’t feel like my sister deserved it; I didn’t feel like the other members of my family deserved it. Intellectually, I don’t believe in fate or karma. Nonetheless, I deserved it. Of course I did.
The internet, though. Here was a place where I could write something, or take a photo, or build some software and release it, and the world would respond. Every response was a distraction from what was actually happening. This other world, not so much a backchannel to real life as a parallel universe with its own culture and rules, could take me away, just as it had when I was a teenager. Even then, I would check for new messages relentlessly, dialing up to Demon Internet and logging in many times during a long, after-school evening. Now, decades later, the web seemed infinite, and there was always something new to say, to get involved in. It was a balm, and then an addiction, and then a distraction. A way to feel less worthless. And whereas my teenage self had needed to dial up from the desktop computer in his bedroom after school, the iPhone gave me access to it anywhere.
I wrote recently about needing to pull back from social media. It’s not the first time I’ve written a post like this: it’s been a cycle of addiction. But I don’t think I’ve ever written in depth about why I needed that back-channel. It’s sometimes easier to look down at the device in your hands than take life squarely in the face.
But that doesn’t mean the escape is reasonable, or healthy, or right. There were times over the last fifteen years when I needed to be present in the moment and I just wasn’t: when I was racking up points sharing links rather than facing up to what was happening. It made me avoidant and disconnected; untethered me from the world. It dulled my empathy and let me remove myself from it all.
This isn’t a “screens are bad” post. It is a post about being forced to reckon with what actually matters, even when it’s hard to look at.
Maybe what I’m saying doesn’t make sense to you. But when I say I want to remove myself from social media, when I don’t think it’s good for me, and when I keep coming back, this is what I mean. This is what’s happening.
Which means the indieweb isn’t just a technology movement to me. It’s a way of reclaiming more of myself. And in that light, perhaps I should just own my mind and switch it all off for good.
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