Growing up in suburban Connecticut, my mom was the most together person I knew. She has always been extremely articulate, a feminist, over-prepared and confident, with bright red lipstick and a statement scarf. She is 5’11” and a regular wearer of heels. She was an executive at a huge corporation my entire childhood, part of the first generation in her family to get a four-year college education, and incredibly dedicated to leading my sister and me by example. She once took a month-long business trip to Russia where I’m sure she sat in a lot of meetings in a lot of grey conference rooms, but where she also got to shake hands with an astronaut. That last detail is what stuck with me as a kid, and in my mind’s eye that’s who my mother was: the one away making deals with astronauts and then coming home to give me a hug and tell me how much she’d missed me.
She also lived, undiagnosed, with early-onset Alzheimer’s disease for most of my life. In 2014 we finally got a definitive name for what was going on.
It took years for any of us to perceive her illness as a singular storm and not a series of ongoing-and-unrelated changes, but as a kid who gradually felt the intimacy of that mother-child relationship disappearing, the shift was acute. I was baffled people weren’t picking up on how far away from herself she was growing, and felt guilty for how upset it made me.
When I’m sitting at a computer and posting something sincere, I fear being cloying. I fear broadcasting things that are too intimate—especially as a woman and as a writer.
My mother took a break from her career my senior year of high school in 2005 and never returned to the corporate world. At the time, the hard-and-fast response to the extended family was that this was a much-needed hiatus to spend more time with us kids, but I remember wondering if the trouble she was having with her memory might have been a motivating factor. Would she be able to perform at the same level when she went back? I floated the question out to my parents a couple of times over the course of the first few months, and was told not to be ridiculous. She loved her job. Of course she’d go back having not missed a beat.
Among the many problems with Alzheimer’s is that it overcomes the brain in phases, and at a different pace for every patient. It’s difficult to diagnose for this reason. People can spend years treating one-off symptoms without realizing there’s something holistically degenerative running the show. This was the case for my mother. For years, one symptom would be tested and chalked up to aging, just to reveal another we’d never encountered before. The diagnostic process became a scramble to a finish line everyone was hoping we’d never reach. No one wanted to land on Alzheimer’s. No one wanted to talk about it either.
But I did. Like most teens, I talked to my friends instead of my family, and I did it online. In 2002, I started an anonymous blog on FreeOpenDiary that I kept for four years, along with a LiveJournal and a MySpace (both also anonymous) that I’d bounce between from time to time. The blogs were full of just as many run-of-the mill personality quizzes and Sufjan Stevens lyrics as they were personal posts, but I could say I was frustrated or having a rough day without feeling guilty for focusing on myself, and other kids were doing the same. As my mother’s symptoms got more pronounced over the years, my sister and I were often called upon to roll with the punches day-to-day. For most things, like when she started buying three jumbo bags of shredded cheese every week on her trip to the grocery store, it was easy enough to accept the new habit and avoid an argument. But other times, I just wanted to be her kid. When the car keys went missing or my textbook would appear in a hallway closet, I wanted to be as indignant and rebellious about it as I felt. But the more time passed, the more that desire started to feel like something selfish; so I’d go upstairs to our computer room, sit in my dad’s blue swivel chair, and hash things out anonymously.
None of my friends at high school knew how rapidly my life was changing, but to be fair neither did I. Things sucked, but wasn’t that a token teen narrative? Moms get mean and dads get distant, and then you grow up and don’t live with them anymore. It all works itself out. I knew people whose parents were getting a divorce or whose dogs had just died, and somehow those narratives seemed more real.
Posting teen angst poetry and being part of an active commenting community helped me digest the garden-variety pain of growing up—and, unbeknownst to me at the time—curbed the loneliness of being raised by one sick parent and one caretaker parent. When there wasn’t space or time for me in my parents’ emotional lives, there was infinite space and time online. I couldn’t offend anyone with my feelings there; readers just took them at face value and offered me their support. It wasn’t the best system of self-expression, but it worked well enough to get me through high school. I figured that when I got to college I’d forgo all the blogging and replace it with Real Things.
My Tumblr wasn’t a static, positive feedback loop for my venting like my high school blogs had been—it helped me find people I felt comfortable talking to and bring them into my life.
And I did do Real Things. I had a typical college experience; I went to a tiny school in rural Maine and made good friends. Every once in a while a care package would arrive for my roommate, or someone would receive a call from home after a tough exam, and I’d see how involved and lighthearted other families could be with one another. It would sting a little.
Back in Connecticut, my mom’s still-undiagnosed illness continued to rear its head in new ways. The dynamics in our nuclear family took hard shifts to accommodate the stress. She’d disappear for the day every once in a while, leaving her phone at home. Without fail, she’d walk in after dinner with a Lord and Taylor bag and announce that she’d been shoe shopping, but it never got easier not to worry. More than once up at school I got a call from my sister or my father, asking if I’d heard from her or if maybe she’d driven up to see me. In the midst of all this, my father had taken on the roles of mediator, therapist, and sole breadwinner for us all, and my sister was navigating middle school. After two years of vacationing in adolescence in Maine, it became harder to ignore how tied I still was to my mom. I felt a familiar itch; if I went online, I’d find the support I was craving. So I started a Tumblr blog over Christmas break in 2008. At the time, the Tumblr community was tiny, insular, and focused on connecting you to people with similar interests. I posted about television, music, and peppered in some personal writing, and so did everyone else I followed. The only difference was this time, I was posting under my own name.
My Tumblr wasn’t a static, positive feedback loop for my venting like my high school blogs had been—it helped me find people I felt comfortable talking to and bring them into my life. My senior year of college, I got an Ask Box question from a girl who went to the same school. We got lunch in the student union, met all of each other’s friends, and started making short movies together. I got my first full-time job because of people I knew through Tumblr when I graduated in 2010. I moved to New York, and most of the friends I made were people I’d met via social media. I’d tentatively get coffee or a beer with someone whose blog I’d been reading for years, and find out he or she was phenomenal and funny and kind. I was living only 45 minutes from my family, but felt so much more fortified than I had as a kid. I’d visit them regularly, and then retreat back to the emotional ecosystem I’d built for myself in the city.
After four years of knowing one punchy, sweet writer through social media and hanging out in real life when we could, I dove into a long-distance relationship in 2012. We sent each other hand-written letters, made .zip mixtapes, and visited one another every few weeks. A year later he moved in with me in New York, and I thought I’d done it. I’d found the realest of Real Things.
Just like when I was 18 and plugging into the emotional life of being at college, the itch to write about anything personal online disappeared once my boyfriend and I were in the same city. I still posted photos to Instagram and occasional jokes to Twitter, but I pretty much kept this new relationship off the radar. Our Tumblr community had inadvertently watched us start to date, and now it felt like I’d be betraying something sacred by exposing any more of our life together. For the first time in my adult life, my family wasn’t just comprised of the people on the phone back in Connecticut or the group favoriting my tweets, it was also sitting on the couch next to me watching Netflix.
My blog laid dormant for a year while we lived a silly, beautiful life together. Then, my boyfriend’s mental health took a sharp turn and he fell into a major depression. I didn’t know what to do beyond offer my support and keep an open dialogue, and easing his struggle day-to-day became a primary focus. I knew I could hop online and fire off a blog post if I needed a boost of my own, but this was his journey, and I felt that same old guilt at searching for support when his suffering was so much greater. Blogging had been appealing to me as a teen specifically because there were no repercussions for any of the people who lived in my house, or on my street, or in my town. No one I knew was going to see a FreeOpenDiary post about how I’d been stranded at basketball practice after my mother forgot to pick me up, and even if they did, I had changed all the names and locations. I could put the story out there without hurting anyone, and it would feel like I had asserted myself in some way. Now, anything I posted would be seen by our friends. More importantly, I’d be outing the person I loved before he was ready to talk about his experience, and I couldn’t do that.
Moms get mean and dads get distant, and then you grow up and don’t live with them anymore. It all works itself out.
When you’re being relentlessly forthcoming about most things in your life online, how do you organize your grief or your joy? Should those emotions simmer and become something you understand before you mention them? Or should they be reported live, like the funny conversation you overheard on the train this morning?
When I’m sitting at a computer and posting something sincere, I fear being cloying. I fear broadcasting things that are too intimate—especially as a woman and as a writer. When it comes to the parts of my life that matter most, I always worry about the implications of sharing too much at the wrong moment. You see it all the time in your feeds; announcing, say, a pregnancy leaves you subject to everyone’s advice and opinions, and it implicates the Internet ecosystems of the co-parent and the future child. Posting about a lost job can open the floodgates on everyone’s sympathy and turn your feed into a condolence headquarters instead of the bevy of links to job openings you’d hoped for. When you share good news and your community chimes in to congratulate you, it can be wonderful, but when the more nuanced parts of your life sneak up on you, the waters get murkier. At the end of the day, if what I was looking to hear from people was, “I’m here for you,” I started to suspect there was a better way to get there.
As it became clear my relationship was coming to an end, my dad called to tell me my mom was finally diagnosed with Alzheimer’s. The call was less emotional than it was relieving. There was a name, and it fit, and now there could be a plan. Our stress didn’t evaporate, but this was the start of whatever came next. It gave us all the opportunity to show up for one another more fully, and it provided a much-needed vocabulary for what had dictated so much of how we’d been relating to each other over the years.
Over the next few months, instead of blogging as I tried to process the weight of my mother’s illness and the loss of the relationship I’d valued so much, I tried something new: I took care of myself. I slowed down. I went to the doctor. I talked about how I felt aloud, face-to-face, so often that it probably bordered on eccentric for some people. But I learned to strike a balance between telling my full story and offering up a short version when it seemed more appropriate. The people in my life extended themselves to me, and I did my best to be just as generous back. As for my Internet presence: I mostly tweeted about Gilmore Girls.
Despite how dark it felt to search for a new apartment, move, and start a new life—my emotions became incredibly well lit. Instead of curbing my grief by blasting out posts and subsisting on the faves, I sat down with it on the couch. I patted the cushion and invited it closer. There were days when not crying was an accomplishment and shampooing my hair was an overachievement, but for the first time in my life, I felt like my whole self was in the room with me, and it made me proud. I woke up every morning and was patient and spoke clearly, and I let that be enough. I figured out how to be raw and open as hell in real life.