dad part 1

Growing up, my father was the calm, organized center of our family. My mother had health problems and a demanding job, so working and caring for herself and spending time with us was all she could manage. Cooking, cleaning, bill paying, and administrative tasks fell to my father, who handled them with such ease and timeliness that even as an adult I sometimes don’t understand why my new car registration sticker doesn’t just show up on my windshield one day, or why it has to be my job to know what time my flight is.

When it came to traveling, my father was a machine. He booked our flights and hotels and car and loosely planned our sightseeing activities in advance. On travel mornings, he would wake my sister, mother and me up at the appropriate times, load the car, drive us all to the airport, check us in, find our gate, and handle our boarding passes all by himself. My mother and sister were grumpy and sluggish in the mornings, so they would trail behind my father and me as we walked through the airport to our gate. I always took it as a point of pride to walk up ahead with my father. The two of us were awake, we were organized, we were ready. No bleary-eyed stumbles down the concourse for us.

***

My father has Parkinson’s disease. I never thought of his Parkinson’s symptoms as being all that severe, but they’ve worsened over the past few years. He stumbles when he walks, he drops things, he can’t drive a car that isn’t his because his feet can’t tell the gas from the brake, he is taking naps for the first time in his life. These symptoms would be manageable, but there is also the forgetfulness, the lost sense of direction. Sometimes he forgets what he’s saying in the middle of a sentence, or can’t remember a specific word he wants to use. My aunt told me that once, when they were gardening at her house, he briefly forgot where he was.

He’s had Parkinson’s for 10 years, and 10 years is the point at which a Parkinson’s sufferer can have a deep brain stimulator implanted in their skull to relieve their symptoms. As far as my understanding goes, Parkinson’s is hard to diagnose, and the deep brain stimulator is a very bad idea if it turns out the person has been misdiagnosed, so neurosurgeons like to be sure they’re dealing with Parkinson’s before they go through with the DBS implant.

DBS implantThe DBS apparatus consists of a power supply, the nodes that do the actual stimulation, and a few cords that connect the nodes to the power supply. The power supply is about the size of a tobacco can and is implanted in the chest like a pacemaker, the nodes are implanted in the brain, and the cords are run from the nodes to the power supply through the neck. These parts are implanted in a series of three surgeries, and after healing time, a neurologist calibrates the unit and it’s supposed to relieve symptoms.

My family has known this was coming for awhile. My dad made jokes about it, mostly “I need it like I need a hole in the head.” For a long time I saw it as a sort of abstract concept that may or may not be necessary, but as his symptoms worsened, I began to look forward to it, and I think my dad did too. His neurosurgeon scheduled it, and it happened in July of this year.

My parents live in St. Louis and my sister and I live in Austin, so we heard about the first two surgeries over the phone. The first one went fine, he recovered nicely, and the second one went fine until he woke up confused and disoriented. The neurosurgeon said that this was normal, that he’d just had brain surgery after all, and that things would get better quickly. My father stayed in the hospital for a few days and then he and my mother went home.

They shouldn’t have gone home. Dad wasn’t any less clumsy than he was before the surgery, but now he’d had brain surgery, so if he fell and hit his head at home it’d be a very bad thing indeed. And he did fall, but thankfully he landed on his knees and elbows and not his head. Worse, though, he remained confused and disoriented to the point where one evening he became convinced that he wasn’t in his own house. He’s quite a bit taller and stronger than my mother, so my aunt and a visiting cousin had to come over and prevent him from walking out the front door into the night.

I got a text from my aunt: “One of you should come to St. Louis.” My sister needed to stay home with her six-month-old baby, so I caught a flight to St. Louis and arrived on the day of my dad’s third surgery.

***

 My aunt picks me up from the airport and drives me straight to the hospital, where I take the elevator up to the neurology floor and find my father’s room. He is tired and out of it, but happy to see me.

In all the confusion, my aunt and mother have forgotten to warn me about the surgery scars. My father has a huge scar across the top of his head and another one down the side. The one down the side is new; it’s held shut with large staples. They’ve shaved his white hair around the scars, leaving a lone wispy tuft at the top of his forehead, which makes him look strange. I’ve never seen a brain surgery scar before, and seeing one on my father as he lay in a hospital bed is almost more than I can take.

More than I can take will come later. My mother has been taking care of my dad around the clock for the past week, and she needs a break. I offer to spend the night in the hospital room with my dad so she can go home and get some rest.

***

My dad grew up on a farm in northwest Ohio. Gender roles being what they were in the fifties and sixties, his two older sisters helped my grandmother with housework, and he helped Grandpa with farm chores. They would get up very early each morning to milk the cows and do other things I don’t know about because my father can no longer type and has stopped writing his memoir. It sits in text files on his computer, which he took apart the other day while my mother was asleep because he thought something was wrong with it, and now he can’t put it back together.

My father is the one who taught me how to build and use computers.

Farm living was hard work, and eventually my father’s family sold the farm and moved into a nearby town, where my grandfather worked for the city water department. The farm work ethic followed my dad into adulthood, and I have never seen him wake up later than 6 a.m.

***

My mother gathers her things and goes home. My aunt and cousin arrive and the three of us talk for awhile. My dad doesn’t say much until my aunt is telling a story about the time she and my father were children and they were both in the hospital having their tonsils taken out. She’s saying that my grandparents were really worried about the tonsil surgery, because another child they knew had died during a tonsillectomy. “We were friends with the family,” my aunt says, “but I can’t remember their name.”

“Stevens,” my dad mutters from his hospital bed. “It was John Stevens.”

My aunt and cousin and I exchange surprised glances. “I can’t believe you remember that!” my aunt says. “You couldn’t have been older than 5.”

I don’t want my aunt and cousin to leave, but of course they have to, and then it’s just me and my dad. The other hospital bed in the room is empty, and I settle in with my e-reader, anticipating that my dad will go to sleep soon.

He doesn’t. They’ve given him all his pills and a sedative and some water and helped him go to the bathroom and tucked him in, but he doesn’t go to sleep. Or maybe he does sleep a little, but after 20 minutes or so I hear him sitting up in his bed. I get up and go over to him and he says, “Well, let’s go if you want to leave.”

“Dad, we’re not leaving,” I say, and he glares at me from underneath his imposing eyebrows and sighs. The nurse and an orderly come in and put an alarm on his bed, which will sound whenever he gets up so that they’ll know to come in and help him, and maybe he’ll realize he’s not supposed to get up.

The alarm does its thing, but it doesn’t deter him. He sits up anyway, or tries to stand, and says things like:

“It’s time to milk the cows.”

or “Let’s go if you’re ready.”

or “What time do you want me to get you up in the morning?”

This last one kills me, because when I was a kid he would say it to me every time we had to go somewhere early the next morning. “What time are we leaving?” I’d reply, and he’d tell me, and I’d tell him how long I’d need to get ready to go. The next morning, without fail, he’d knock on the door to my room at the exact time I requested. I’d hear his footsteps recede down the hallway, and then I’d hear him knock on my sister’s door.

Each time he sits up I put my hand on his shoulder so he doesn’t stand. He’s classified as a “fall risk,” and he’s not supposed to stand up and move around the room without an orderly or nurse present. “Dad, we’re in the hospital, and it’s not time to leave. I’m sorry.”

He glares at me again. “Why is everyone so sorry all of a sudden?”

The bed alarm is going off and an orderly and nurse come in. The orderly helps my father to the bathroom, and I ask the nurse if she’d mind watching him so I can have a break. She says okay, so I take the elevator downstairs and go outside, where I sit on a bench and sob.

My mother’s health problems throughout my childhood mean that I am used to taking care of her. In college I spent a night on a cot next to her hospital bed (though it pains me to admit that she asked me to do this in exchange for buying me a new pair of jeans, and I accepted), and I have brought her things she needed and helped her get up and move around as she recovered from multiple surgeries.

I have no such history with my father. He spent my entire childhood in near-perfect health, caring for my mother and sister and me tirelessly and without complaint. That I now have to help coax him back into a hospital bed he doesn’t think he belongs in is unbelievable to me.

***

My dad’s parents were very adamant about education; their goal was for their three children to have an easier financial adulthood than they did. After he finished college, my dad completed both a master’s and doctorate in chemistry in the span of five years. He and my mother married and moved to the Houston suburbs, where my dad worked for the same oil and gas company for thirty years, his entire adult career. My sister and I never wanted for anything important–we lived in a big lovely house and had our own car and studied abroad and never had to worry about debt or student loans. To say that my father had an easier financial adulthood than his parents did would be an understatement.

When my father was 55, the oil and gas company he worked for was sold to another company, and he was offered early retirement with full pension. He spent the first part of that retirement testifying as an expert witness against large, scary oil conglomerates similar to the one he’d worked for. At one point he gave my sister’s husband a jar full of mud, and assigned him the task of keeping it sealed until a specific date, on which he was to open it and see if it smelled bad. “It’s for a case!” Dad said. I don’t know what happened to the mud or if it smelled bad or not, but the case was eventually won.

In his spare time he did carpentry and genealogy, read books about science and the history of farming, sang and did sound mixing for a local adult chorus, collected old books and farm equipment, volunteered for Habitat for Humanity and helped cook breakfast at a soup kitchen. At my grandfather’s funeral he gave the eulogy, and when he got to the part about how my grandfather had passed to him his love of learning, I thought, “And how.”

***

When I go back upstairs to his room, the orderly is suggesting that my still-awake father might like to watch some TV, and I can’t help but laugh. My father’s hatred of television is notorious among our friends and family members; he enjoys PBS documentaries, Rachel Maddow, The Daily Show and TED talks, but as far as he’s concerned the rest of it can all disappear forever.

“He hates TV,” I say to the orderly, “but thank you, and thanks for keeping an eye on him. Dad, do you want me to read to you?” Dad says yes, so I flip through my e-reader to see what I have. On his recommendation I’d downloaded Angle of Repose by his favorite author Wallace Stegner, so we agree that I’ll read that, and I pull a recliner chair up next to his bed and sit down.

The book turns out to be narrated by an older man in a wheelchair who is suffering from a terminal disease, and the first part of the book has the narrator complaining that his children want to put him in a home. I can’t tell if Dad’s following the plot or not, but I skip ahead to the farm part just to be safe, and he doesn’t seem to notice. Eventually he falls asleep, so I stop reading, and then I fall asleep too until the bed alarm wakes me an hour later. He’s trying to get up again, trying to leave, and I say, “Dad, we have to stay here in the hospital. I’m sorry, hon.” I don’t realize how patronizing this sounds, but he does.

“Don’t give me that ‘hon’ crap,” he says.

“Okay,” I whisper. The orderly and I get him back into bed, and I sit back down in the recliner. I can’t remember where we left off in the book, so I just pick a random paragraph and start there. It’s 3 a.m.

We continue like this until 6:30 rolls around and it’s time to wake up anyway. I order us breakfast from the cafeteria, and we eat in silence with the TV in the background tuned to the Weather Channel, the only thing on that I think he could possibly stand. When he’s done eating he grins at me and jokes, “So, are we going to have this neurosurgeon disbarred or what?”

(to be continued)

i would’ve had us swerving through those streets

I read a lot, but I also watch a lot of TV. I have TV on while I work, while I clean, while I sew and make jewelry, and sometimes I like to put Netflix on my laptop on the edge of the sink while I’m in the bathtub.

I watch newly-released shows and shows I haven’t seen before, but mostly I watch things I’ve already seen. Give me a line from the X-Files and I can tell you which episode it was, which season that episode was in, and possibly even who wrote it. I can quote nearly entire episodes of Bob’s Burgers or early Simpsons. Sometimes things I say out loud are lines from TV shows that pop out of my mouth without my even realizing it.

My TV-watching used to bother me. A whole lot. I used to beat myself up for the habit, because I was better than that, or I should be writing instead, or successful people don’t watch TV. But mostly I’ve come to terms with it. As I’ve said before, it allows me to not think so much about my own life, and that’s good for my mental state.

Also TV shows are stories, and I love stories in whatever form they take. A well-done television show has plot and character development and themes and subtext to rival plenty of good movies and books. My old English-major habits die hard, and I usually examine the TV I watch as if I were writing a college paper on it.

***

There is a phrase that I use only in my own head, that I don’t usually tell anyone about. It’s “now is now and it’ll never be now again.” I wish I knew when it first came to me, but as far as I can recall it’s always been there. I say it in my mind when I want to capture and remember specific moments from my life, moments when I am particularly happy or content or when I’m doing something cool I’ve never done before. I say it to myself and I see

a little Texas valley in the winter, as two close friends and I look out over it on horseback

the sunset out the driver’s side window on a highway in Austin, this song on the stereo, a freshly-pressed plaid shirt

late afternoon light reflecting off the frozen Charles River

a red neon sign in Manhattan that blinks CO FF EE over and over, as I’m sitting on a bench talking with a friend

a specific little mailbox on a narrow street in Onset, MA

wooden posts submerged underwater as I glide past in a kayak

watching the sun set over Lake Somerville from the back of a crowded pickup truck

sitting at a sushi bar with friends, bouncing in my seat because the food is so delicious

streetlights mirrored in wet city pavement at night, walking too fast across the street

snow falling on the windshield of my old black Acura

I replay these and other moments in my head when I’m feeling depressed or bored or missing someone. Or sometimes they just pop up unannounced, and it’s like I’m there all over again. Now is now.

But those moments make me a little sad, too, and that’s the second part of the phrase: it’ll never be now again. Sometimes I re-watch my favorite episodes of a TV show over and over again, noticing little things about them that I hadn’t seen before: a billboard in the background, a character’s facial expression, a line I didn’t remember.

I have a freakishly good memory, but I still can’t examine my mental snapshots that way: try as I might to picture what color my horse was or what I was wearing or what street we were on or what the house behind the mailbox looked like, I can’t.

And I know that life can’t always be Good Times, otherwise the Good Times would become just Times, but it still frustrates me that I can’t rewind and watch the best parts of my life over and over again for new details. When I believed in God as a child, I used to say that in my version of heaven, I’d be allowed to sit in front of a TV in the clouds and watch my life unfold all over again on the screen, my finger hovering just over the fast-forward and rewind buttons on the remote.

I have plenty of things to look forward to in my life, of course: upcoming travels, pretty sunsets, seeing friends, watching my nephew learn to walk and talk. But sometimes I’m sitting in an airport or in traffic or on my sofa having normal Times and I think, why can’t now be now again?

(P.S. I made a public Twitter account, so you can follow me there if you like.
P.P.S. Post title is from here.)

i have a prestigious blog, sir

prestigious blog

post title from Party Down, one of the best shows that ever got cancelled

Some of you newer people (are there any newer people? who knows) may not know this, but this website and I used to be kind of internet famous.

Don’t laugh, I’m serious. At its peak (2001-2006), bluishorange got 4,000 unique visitors a day. Blogs were a brand-new thing, I was writing almost every day, and it didn’t hurt that I was young and cute. Sometimes when I sat down to write I would picture all 4,000 people standing together in a room–this was encouraging at times, but other times all those imaginary people were just staring at me expectantly, which was nerve-wracking.

Lots of good things happened to me as a result of that traffic. I met a ton of amazing people (many of whom are now my closest friends), I was nominated for awards, I got to be on a panel at SXSW Interactive. An anonymous reader (and eventual friend) gifted me his used MacBook to take on my road trip in 2007.

But some bad things happened, too, and I’ll tell you about a few of them here.

***

In late 2000, I quit my job as a web designer to go back to university, and after I quit, a former coworker began to send me lots of emails. They were friendly at first: he wrote responses to things I’d written on my website, or notes about what was happening at my former workplace. Then he asked me out. I politely declined, but the emails kept coming–mostly he was trying to convince me that I should in fact go out with him. We had not been in the same department at work, and though we’d worked in the same room of cubicles, we had never actually spoken in person. But as best I could tell, reading my website had made him feel like he knew me in a way that was very real to him.

Westheimer Street FestivalOne day I made the mistake of mentioning on my website a band that I was going to see at a street festival. I had a few friends in the band, and I’d made their website for them, and I was really excited to see them perform.

You can see where this is going, right? He was there. Of course he was there, and I can’t believe I was surprised by it. He sat under a tree near the stage, and though he was wearing mirrored sunglasses, I could tell that he hardly took his eyes off me. He was a big guy, and to a 22-year-old 125-pound girl like me, he looked a bit menacing. I had come to the festival with a few friends who were enjoying the show, so I didn’t say anything to them or try to get them to leave with me, though I probably should have. When the show ended, he went up to the merchandise table, bought a CD, and then walked away.

I got home that night to another long, desperate email, and (I remember this like it was last week) it ended with, “Please help me, Alison. Please be my friend.”

I replied immediately with, “Please do not contact me ever again,” put all his emails and my responses into an archive folder so I wouldn’t have to look at them in my inbox, and called my father. He insisted we talk to a lawyer (a family friend), who advised me to keep all the emails in case they were needed later, and told me that I needed to take my website down.

I took it down for about two weeks, which was all I could take, but I never again said anything online about places I might be going. The guy emailed me one more time in response to my plea not to contact me. It was full of invective–I was a bitch, and a tease, and I had led him on, and he was just trying to be nice and what the fuck was wrong with me.

Sometimes in my dreams I can still see my reflection in his mirrored sunglasses.

***

It was mostly easy to not inform the internet of where I was going to be in the future, but harder to avoid everyone knowing that I would be attending a conference I went to at the same time every year.

In the months leading up to SXSW 2003 (or 2004? I can’t remember exactly), there was a guy who would leave lots of comments on my website. The comments were mostly harmless, but his own website was less so. It was more of a home page than a website–he had a lot of different little sections on the page with his favorite quotes, links, and a few of his opinions, most of which were about what races of girls he liked and didn’t like. Fully half of the quotes and links on that page were mine.

He had never emailed me personally, but his apparent level of interest in me reminded me enough of my former coworker that I was pretty freaked out by him.

In a comment a few weeks before SXSW, he informed me that he would be in town during the conference and wanted to meet me. I did not want to meet him, so I ignored the comment, but I worried about the conference itself. I didn’t know what he looked like; would he just come up and blindside me?

I spent most of the conference looking over my shoulder. Eventually my friend Ryan met him briefly outside the convention center, then ran inside to describe him to me and let me know he was nearby and asking where I was. I quickly left the convention center via an exit on the other side of the building, and was lucky enough not to encounter him for the rest of the conference.

This is where my memory gets a little fuzzy. After the conference I remember uploading a lengthy .htaccess file to block his many different IP addresses from accessing my website. Eventually I stopped hearing from him.

***

There are other stories. A woman from the U.K. used my blog posts and photos of me to construct a fictional online identity, and after she was caught, the guy who had fallen in love with her attempted to transfer his affections to me. I got emails from men telling me that they had seen me out at this concert or that bar or cafe, but they hadn’t worked up the nerve to say hello. I would comb through my memories of those nights, trying to remember having seen someone looking at me.

All of this gave me a constant feeling that I was being watched. The 4,000 people I pictured in the 4,000-person-sized room usually stared at me expectantly, waiting for me to write something good, but other times they just watched. I kept on writing, because I didn’t know how not to write, and 99% of my readers were nice sane people who appreciated what I had to say.

Here is where I remind you that I’ve almost never done any non-blog writing. My stint as a person who writes (I don’t like to say I’m a writer) began with blogging, and continued with blogging, and doesn’t really exist outside of that. People always tell me I should write things just for myself and not post them. But I don’t exactly know how to write something that won’t be shared immediately.

Eventually I did stop writing regularly. Weblogs stopped being the best and easiest way to meet and keep in touch with people, and my site traffic fell. Blog commenting technology improved, allowing me to delete comments I felt were inappropriate or scary, but those comments never really came.

I’d be lying if I said I didn’t miss my internet fame from time to time, especially when it happens to my friends and I can see the looks on their faces when someone they’ve never met tells them they like their work. If I hadn’t stopped writing, would I be a professional writer right now? Would I have an agent? A book deal? (There’s an old, old message in my “Other” folder on Facebook from a publisher asking me if I’d be interested in writing a book. I never followed up.)

If I hadn’t stopped writing, would I be safe?

***

At the XOXOFest closing party, I was talking with my friend Casey about Anita Sarkeesian. She’d spoken at the festival despite the numerous threats to her life and family she’d received in response to her video series about women in gaming culture, and Casey and I were discussing how impressed we were by her work, her tenacity and fortitude. I told Casey that if I had to deal with what Sarkeesian has, I would just have curled up into a ball on my bathroom floor and stayed there forever. No way would I have been able to continue my work as she has.

And I guess I didn’t continue my work. Granted, that was more about my depression than my online creeps, and my online creeps were of a different caliber and much smaller magnitude than hers are, but I can still see the comparison.

I realized while talking with Casey that in not writing about my online creeps back in 2000-2004, I missed an opportunity to expand (start?) the discussion about What It’s Like For Women On The Interwebs. What it was like is that I wrote about myself, about being a college student and a waitress, about traveling, about living with depression and anxiety, and people (men) thought this meant that I owed them something. But I don’t owe anyone anything. I’m not sure what Sarkeesian’s harassers want from her (silence? an apology? I doubt they actually know what they want), but she doesn’t owe them anything either.

I’m glad that other people are now writing and talking about this issue and doing it better than I could have.