so you roll on with the best you can

It’s Valentine’s Day in Austin and good god is it fucking gorgeous outside tonight. I’m at my sister’s house, doing my laundry and sitting on the patio watching through a baby monitor as my nephew sleeps. My sister and her husband went out to dinner, and in return for baby monitor-sitting I was promised a slice of cake from the restaurant.

I’m single now.

I never thought much of Valentine’s Day to begin with, but that was easier to say when I was in a relationship. It’s a dumb made-up holiday! Why can’t we show love whenever we want? Why go out when everything’s so crowded? Cards are stupid! and so forth. And I still think all of that is true, but this year it’s hard to see my coupled friends’ smiling faces in pictures from their dates. I talk to these coupled friends about my breakup, and I imagine that after I leave their houses and head home, they look at each other and say, “I love you so much! Thank god we have each other!”

Well, thank god you do.

I tried to reserve a houseboat on Lake Travis for myself for tonight. I thought, what better way to spend Valentine’s Day this year than alone with myself and the lake and some wine and good snacks and, I don’t know, sleeping in a berth or something? The houseboat turned out to be booked for tonight, but I got so attached to the idea that I claimed it for tomorrow night instead. I’ll still have the wine and snacks and berth, and it’ll be a nice thing to do for myself.

I can’t talk about the breakup here, of course, but I will tell you this: I’m moving to St. Louis. My dad’s condition never improved much after his brain surgery last July (I have a half-finished part 2 post on that I’ll revisit sometime), and my mother is now his full-time caregiver. When I told my trapeze instructor that I was considering moving closer to my parents, she said, “Well, you have to lead your own life, right? But I guess that’d be hard to do if you just sit around Austin worrying about them and feeling helpless.”

And that’s pretty much it. They’re too young and able to start thinking about assisted living, but the house and my dad are too much for my mom to take care of by herself. She puts on a very game, very capable face, but I can see the cracks forming in it, both figurative and literal, and I know she can’t go on much longer without my help.

My sister and I tried to get our parents to move to Austin, since she and I both live here and could share the workload, but my mother won’t hear it. When we brought it up she revealed that she hated all thirty years she spent living in Houston, and now that she finally got out of Texas she doesn’t want to go back, even to a different city. I’ll admit it hurt me a little to hear that since I was raised here, but I understand. In any major life decision involving multiple people there is always a stubborn one, and this time my mom has earned it.

There are other factors. I’ve lived in Texas my whole life, and I’ve always said I would like to live somewhere else eventually. I work remotely now, so I can move without having to find a new job. The Texas summer heat is getting to me, the cost of living in Austin is skyrocketing, I’m tired of the politics here. St. Louis isn’t exactly what I pictured, and it isn’t perfect, but it’ll do. In my mid-thirties I’ve found myself desperate to own a house in a way I never was before, and St. Louis has lots of beautiful, affordable old houses I’d be comfortable and happy living in.

Alone. Which is fine. It’s fine.

I cry a lot these days. It’s triggered by random, mundane things, and then when it starts I don’t even know why or what it’s for. Is it the end of my six-year relationship? Is it leaving the town and friends I’ve known for ten years? Is it not being near my baby nephew to spend time with him and watch him grow up? Is it leaving Texas, the only state I’ve ever known? Or is it the fact that my father, my constant, my rock, the person who always understood me even when nobody else did, isn’t really there anymore?

I mean, he’s there. But he doesn’t know what day it is.

I think about how excited the pre-surgery Dad would be to help me with buying a house. He’d have all sorts of advice about it, which he’d only give me if I asked, but I would ask. He’d know what to do about the financial aspects, the inspection process, the weird little problems and quirks that come with owning an old home. He’d help me knock out walls and install and fix things and we’d have a great time doing it.

But if he wasn’t in this condition, I wouldn’t be moving to St. Louis, and I wouldn’t be buying a house, so none of that would ever happen anyway.

My active imagination allows me to think about all sorts of things that might happen to me, and live them out in my head as if they were real. Last year I wrote that applying and interviewing for jobs was like living a thousand different imaginary lives. With each application, with each interview, I’d picture myself driving to that job, working in that office, traveling for business meetings, moving to a different area of town to live closer to work. And with each rejection, that little life in my head would die, and I’d have to start all over again.

I do that with everything. When I make new friends I invent road trips we should take together. When I used to go on dates I would think about what my life would be like with that person. When my nephew was born I pictured all the time he would spend with his grandfather, learning about sports and woodworking and music and farming and history and all the things my Dad knows and taught me about.

But that won’t happen either. My father is not able to care for his only grandchild.

Okay, maybe I do know what I’m crying about.

I’ll be all right eventually, I guess. I’ll move to St. Louis in a few months and live in an apartment until I can buy a house. I’ll take little weekend trips to places in the Midwest I’ve never been, or to visit old friends who live nearby. I’ll restart my jewelry business. I’ll learn trapeze at a different aerial studio with a different instructor. I’ll make new friends. I’ll meet someone? Maybe? I suppose it’s not impossible to imagine that someday my life won’t be a hot garbage fire, and someone new will come along and say, hey, I want in on that.

But then while I’m on the date with the someone new I’ll get a call from my mom saying that my dad fell down the stairs again, and I’ll have to leave the date to go help him, and then I’ll never hear from that guy again.

Which is fine. It’s fine. That guy sucks anyway.

In the past four years I’ve lost two jobs, my beloved dog died, my nephew was born, my father had brain surgery that didn’t work, I ended a long-term relationship, and now I’m going to move to a different state to help care for my father. When does it ever stop?

It doesn’t, does it? I keep waiting for things to calm down and they never do. I’ll get my heart broken again or I’ll lose this job or my other dog will die or I’ll fall off the trapeze or my new house will burn down or my mother will get sick.

I was talking to my sister earlier about everything I’m going through. I was telling her about some unexpected feelings I’m having, and how I think they’re maybe just my grief over what’s happening to Dad and the end of my relationship and moving away from my friends, but my brain is manifesting them in a different way so I can handle them better.

“Does that sound right to you?” I said. “How’s my armchair psychology?”

She paused. “It sounds fine, I guess.”

“What?”

“Well, why can’t you just feel your feelings? Do they have to be manifestations? Can they just be what they are?”

“I… I guess they can.”

“I mean, they are what they are, and you’re going to go through them no matter what shape they take.”

This had never occurred to me.

Every few years I get the overwhelming desire to blow my life up and start over. I’ve only done it once, when I left Houston and moved to Austin in 2005, but the compulsion is often there. What I learned in 2005 is that when I feel this compulsion, it always means that what I’m not happy with isn’t my life, it’s myself. I blew up my life when I moved to Austin, but it didn’t work, because when I got there I was still me.

But I’m not the same me now that I was in 2005. I’m still a little weird and self-centered and abrasive. I dramatize things to cope with them, I’m plagued by insecurity and anxiety, I’m oversensitive and over-serious and over-analytical. But I’ve learned how to take care of myself in a way that minimizes these things. I’ve learned how to be a better friend and a better family member. I’m stronger now.

When I move to St. Louis, I can take me with me, and that’ll be okay.

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)