Living for praise is empty and self-destructive.

-J.D. Remy, M.D. in Ballad of a Sober Man

The "Actually" Guy

About forty times a day, unable to avoid listening to my parents' conversation from the other room, I feel the need to chime in. In all but the most egregious examples, I try to ignore them and move on. Occasionally I empty my inventory of "actuallys" later in the day. Mostly, my ideas are left unsaid and eventually forgotten. 

It's annoying to have this much insight; no one wants to learn from the "actually" guy.

Note to Self

Note to self: No one cares what you ate for dinner. Tell them what you were thinking; tell them how it felt.

 I'm finding, in recent years, that I'm drawn to anyone who pays me attention. 

Sometimes I think I should be out, in public, all of the time. So people can see me; so people are forced to know that I, and people like me, exist. 

The Earth Revolves Around the Sun

One last quote from Mr. Pinker's excellent book:

"The first step toward wisdom is the realization that the laws of the universe don't care about you."

It didn't feel like home anymore

I drove by the old house yesterday, and made sure we slowed down. It's been more than two years since I moved; sometimes it feels like much longer. We used to pass by, and I felt like I should pull in the driveway. It still looked like my house; it still seemed like my house.

For perhaps the first time I felt different as we rolled down Rotax: something had changed; it didn't feel like home anymore. Maybe it's the two years, and the changes I've been through. It's hard to imagine I was walking and driving, I was so independent so recently. Maybe that's it: the house hasn't changed; I have.

The new owners have made a lot of changes: the once sadly empty backyard has been filled. There's an oversized shed at the back of the property by the orchard. An imposing children's jungle gym once took up that space. To the left, where there'd been nothing but a lonely, underused fire pit, was an ambitious fenced-in garden, and another structure behind it. It must be a chicken coop, I thought, though I didn't see any birds.

I feel happy for them, but a little sad at the same time. Like a jealous friend attending a wedding. I'm glad they're enjoying the house and the yard; I'm happy they're making improvements. They're making the most of their purchase; embracing the life that they chose. I can't help but feel a little empty.

I try to consider all of the ways in which I am fortunate

I try to consider all of the ways in which I am fortunate. 

I have parents who love me and take care of me. (The details of "take care of me" are indeed quite extensive.) I have a roof over my head and plenty of food in my belly. I have friends and family to talk to, spend time with, and laugh. I have money in the bank and don't, thus far, struggle to pay my bills. The progression of my disease has been unusually, odds-defyingly slow.

I live in a time when so much is available to me, of historically unprecedented understanding. Social Security Disability Insurance exists; Medicare exists. I'm privileged to have worked five years for an employer that provided private disability insurance. I'm able to work part-time from my house on a computer.

Medicare―along with supplemental insurance which I pay for―bought me a battery-powered, technically advanced, joystick-operated wheelchair. In this way I've been able to maintain some semblance of independence. I was able to purchase an accessible van to transport my conveyance. I'm fortunate that these things exist.

I live in the age of computers, of easily and endlessly available knowledge and entertainment. For all of the modern methods of communication, to help me feel a little less alone. I'm lucky for pen and pencil alternatives: the mouse in my hand and point and click on-screen keyboard. 

It's easy to forget about all of it, and usually, I do. But I have to remind myself of the good things, and try to give them some weight in my mind.

Note to Anonymous Eyeballs

 If we haven't spoken in a long time, reach out and say hey.

Who says a serious examination of the world can't include a few zingers?

 Within a few pages of each other appear the following gems:

"...in the 1986 Chernobyl disaster, the result of extraordinary Soviet-era bungling..."

"...because of Mao's bone-headed schemes like backyard iron smelters with copious emissions and zero economic output."

Steven Pinker in Enlightenment Now: The Case for Reason, Science, Humanism, and Progress 

Did you ever see an old man in a lawn chair, sitting out in front of his house in the afternoon watching the road? Did you ever wonder what he could be doing, how he could spend hours alone, seemingly staring at nothing? Did you always assume―even though you couldn’t see it―that he had a beer in his lap, and more at the ready? I used to have a neighbor like that, up the hill behind my house in Monkton. I liked to see him as the Vermont country version of Clint Eastwood’s character in Gran Torino, sitting alone with a can and a cooler, gazing out over the valley, passing the time in the shade of a striking old maple.

In the late afternoon before dinner, the guy sitting in the chair at the end of the driveway, that guy was me. I didn’t have a cooler of beer to occupy my time, didn’t wave at the cars (because I really can’t muster a passable wave) as they drove home from work, but couldn’t find anything I’d rather be doing at the time. Finding the smallest of pleasures from something so simple, and objectively boring―even as runners and bikers passed by and my heart ached a little―shows just how much my life is different from yours.

These are the Things that I like to Remember

Tomorrow is June 6th. Every year around this time I think about, and often try to write about my brother. It's been eighteen years since that Friday morning. The time―and truthfully the difficulties in my own life―has done what time does, creating an ever-growing distance between myself and my memories of Nick. I don't often think about where he might be in 2021―I know he'd have recently turned 39, which I find impossible to fathom―because I can't; I don't know the person I'd imagine. Instead, I try to focus on the person I remember, and leave reality undisturbed.

For most of my childhood he was a head taller, and always and unmistakably the big brother. He was shy, quiet, and reserved in public, and an innocent goofball around the house. I tormented him often, in that stereotypical little brother way, prompting a level-headed request to our mother, “Can I kill Nate?” He could dole out a dead-arm punch with the best of them.

I've told you before that Nick and I were not particularly similar―in many ways he took after my mom's side of the family while I took after my dad's. I didn't look up to and try to imitate my older brother; we were different and I knew that. But I never needed or wanted a clone (I guess I'd be the clone) and I'd like to think that each of us learned from our differences along the way.

In lieu of any particular story, let me tell you some things about the Nick that I grew up with. He was into the cosmos, and asked for a telescope one year for Christmas. We used to lay out under the stars in our head-to-toe snowsuits in the backyard in January. We collected baseball cards together, that is to say we strapped on our backpacks and rode bikes to the card shop together. Our collections were as separate and sacred as pillowcases of candy on Halloween night. We hardly ever traded, this wasn't a game, and besides we each had our favorites. (In those early 90's days, his was flamethrower Nolan Ryan, mine was Yankee first baseman Don Mattingly.)

Like outdoor cats with instinctive, ever-increasing perimeters, we explored every patch of woods and neighborhood road within the reach of our pedal power. We were not allowed to cross Williston Road, and we didn't―that was the only rule our mom put in place. The woods behind our house and across the street to the barbed wire-topped airport fence, we were there; the tree fort in the gully at the end of Clover, and the network of bike trails at the end of Duval, we were there; the deceptively expansive patch of woods beside Kirby, and the mysterious and seemingly isolated wilderness behind the new condos on Patchen, we were there.

There was a beaver pond at that last one, and for a time we'd bike there every day after school. Each afternoon we'd walk around on the beaver dam near the base of our newfound favorite sledding hill. We spent hours pulling sticks from that dam, maniacally dismantling the water-tight structure and tossing its pieces near and far. With the compromised dam at our feet, our anarchy was limited to creating some leaks and watching the pond water escape. Nick and I returned each afternoon to find the dam patched back together, some freshly chewed trees now a part of the structure. The unseen beavers won out when the humans became bored and moved on.

Nick was more than fond of his food, sometimes sitting at the table with fork and knife in hand, like a batter in his stance, ready for the pitch. Our endless list of outdoor activities, and later, his near-constant running turned both of us (though him more than me) into hot-burning furnaces in constant need of feeding. His favorite was lobster―I can still see his ear-to-ear smile from the Polaroid of his birthday at (the long-defunct sister restaurant to the also long-defunct Sirloin Saloon) Perry's Fish House. My mom would make crepes for dinner, the ever-simple recipe finally written down (in English) by her mother in observation of her grandmother. She used twin copper skillets over high heat while Nick and I ravenously devoured each round, gradually falling behind the pace of production. There was only one way to eat crepes in my house: one by one as they came off the pan, doused in maple syrup, rolled with a fork, and cut into pieces with the side of the fork. The whole show must’ve been over in about fifteen minutes.

We talked all the time―in some ways I don’t think we ever stopped. I’m quite sure it was my mouth running most of the time, but he made it so easy. We competed at everything, often punctuated by childish outbursts of raw (always negative) emotion. There was no trash talk or gloating from the winner―all Nick showed was that muted, sheepish half-smile after getting a big hit or scoring a goal with his rocket-strong wrister. I can still see his face, holding the game ball in his hand, after throwing a backyard no-hitter: a visibly restrained, embarrassed shit-eating grin.

I can also hear his frustration when things didn’t go his way. In the backyard on the wiffle ball field, or across the street at the ice rink, he almost never let it out around the older guys in the neighborhood. He’d walk slowly back to the bench after making an out, head down in silence. But when it was just the two of us, I saw that competitive fire burn its way out.

We used to ride our bikes to the high school and play tennis. Neither of us had ever had a lesson, and our overhand serves were a work in progress at best, but we did our best and quickly learned enough to get by. (It didn’t much matter that our games weren’t polished, we pretty much only played each other.) I can see him pound a ball into the net and erupt in frustration, “I suck!!!!!” But it always seemed to blow over, once the competition was done, things were never particularly tense between us. Or maybe they were for a time; it’s hard to hold a long grudge against your brother.

“Nick and Nate” they called us. We existed together in their minds and our own. We walked to school side by side, and later stood at the bus stop in the dark. We played Legos and Nintendo for hours, and complained to our mother, “I’m bored.” We collected rain water off the roof of the run-down old back porch, filling every container we could find. We had epic battles of Nerf (actually tennis ball) basketball in my room, and (tennis ball) hockey in the basement and garage. We played catch―he threw me grounders and fielded my throws―long after he’d quit playing baseball. We fought all the time, running around the house, slamming and plowing into doors, for every reason and no reason at all.

We grew up together, in most every way. I never needed to wonder if he’d be there―he was. I never felt alone as a child, because I wasn’t. These are the things that I like to remember.

Random Access Memories

At middle school socials (dances), when we weren't "fight dancing" to Reel Big Fish or The Mighty Mighty Bosstones, multiple girls slow-danced with me on their knees―I was that short. I don't have any pictures―of awkward slow-dancing, repeatedly jumping off the stage and into the crowd, or doing full-speed, head first penguin slides across the cafeteria floor in the green Adidas pullover hoodie that I wore just about every day of the 7th grade. I don't know what brought that to mind, but I'm going to have to listen to "Sell Out".

Human Nature is Primitive

They think that words and thoughts can impinge on the physical world in prayers and curses. They underestimate the prevalence of coincidence. They generalize from paltry samples, namely their own experience, and they reason by stereotype, projecting the typical traits of a group onto any individual that belongs to it. They infer causation from correlation. They think holistically, in black and white, and physically, treating abstract networks as concrete stuff. They are not so much intuitive scientists as intuitive lawyers and politicians, marshaling evidence that confirms their convictions while dismissing evidence that contradicts them. They overestimate their own knowledge, understanding, rectitude, competence, and luck.

Steven Pinker in Enlightenment Now: The Case for Reason, Science, Humanism, and Progress 

A conversation includes both talking AND listening. It can be steered by either party, and should be equally satisfying - that is to say, it should not feel like work to one side - to both parties.

The idea that people feel they need security systems on top of homeowners insurance - and even complain about the cost of each - when compared with global and historical norms, shows the almost ridiculous privilege of the American homeowner. 

I'm inconceivably, torturously bored at the moment.

Go ahead and assume that every photo you see online has been altered.

Do you feel jealousy for the people that appear to have more, or sympathy for those who seem to have less?

Five minutes into shopping for some wheelchair accessories - cell phone mount, cup holder, fold-out table, etc - I remembered how much I hate shopping on Amazon.

If you're constantly retelling jokes from TV shows or movies, you're not funny. Most people are not funny. You don't need to entertain us. You should stop trying.

It seems like I should be able to opt out of ads that don't pertain to me. It seems that the advertisers would want me to do just that, and spend their marketing dollars more effectively. Yes, I do watch the occasional car video on YouTube, I am male, and in my mid-thirties, but I'm not in the market for a Ford or Lincoln. I'd love to pretend I'm going to buy some sweet new ride; I'd love to be wooed for my automotive dollar. But I'm afraid you're wasting your money, and I'd like to be able to help. 

Acknowledgments

Finally, I must thank my friends and family for reading draft after draft of this manuscript...

Sebastian Junger in The Perfect Storm

I never fell down those stairs, or any others, again. I was also never again so casual about using the handrail. The handrail, along with the occasionally required opposite hand from a helper, became an absolute necessity in the years to come. My gait gradually―almost unnoticeably―deteriorated until I was pausing at each successive step, always leading with my right leg. I'm not sure the last time I traversed a single step―it's been that long.

 I eat a lot of mangoes.

I Grew Up in the Backyard

I grew up in the backyard, on the sidewalks, streets, and driveways, and in the half dozen parcels of woods that made up the neighborhood. My brother and I, and the handful of kids closeby, grew up under each other's supervision, mostly outside. We rode bikes and built tree forts, (three that I can think of); we played basketball in the driveway and roller hockey in the street; we spent winters walking with sleds to hills in the woods known only to kids. We made up and adapted games, from "poor golf" to "tree ball" and "0-2" to playing ping-pong with cardboard cake-round paddles on an unhinged door in the basement. We built an ice rink with full-size plywood boards, and made our own goals from two-by-fours, many of us learning to skate in the process. We spent every spare moment - throughout the spring, summer, and fall; during the day and under the lights; in the heat and in the cold - in my backyard playing game after game of whiffleball. 

I never thought of any of it as exercise. When other kids would say they liked to "hang out with friends" on the weekends, I was confused, unsure what that meant. But what did you do? I'd think to myself. The kids in the neighborhood, from across the street and a few blocks away, were always in motion.

It's what we did, and became who we were. As I made my way through high school and college, and the neighborhood's activities and characters were gradually left behind, I found new interests among new friends. In my brother's footsteps, I took up cross-country skiing; we went running and hiked mountains, always with speed and ease, like we'd done it before. In college I started downhill skiing, going on canoe and camping trips, playing pick-up basketball, and walking, biking, and rollerblading all over town. Early in my post-college career, I added more golf on the evenings and weekends, and spent my winter weekends at the mountain. 

Almost all of the people I spent time with, throughout each of the phases of my life, were through sports. I never thought to ask what we had in common - I never had to. Though my life was always full of more questions than answers, I never needed to wonder who I was, or what I liked, in the world of athletics and competition.

Through the difficult times in my life - whether sad, or lonely, or stressed - physical activity was always there. In those moments when I needed to clear my head, or feel the satisfying, familiar sense of accomplishment, I instinctively knew where to turn. When I began to lose that pillar of my life, I did the only thing I could, I fought to keep it.

Remember when you could go out and see friends without them coming by to see you like a patient in the hospital? That was nice; I miss that.

I no longer have a gender. Rather, I have a wheelchair. I'm entirely absorbed into its gestalt. I'm now misrecognized as a man more often than ever before, almost every time I go out. I'm not surprised. I know that 82% of spinal cord injuries are suffered by young men, and middle-aged butchy women must be statistically negligible in that accounting.

-Christina Crosby in A Body, Undone

I never hated being short because being short is who I am, and I don't hate myself.

People ask me things like, Did you always write? and Do you like to read? I'm never quite sure how to answer; I don't think they know what they're asking. 

These are the things I can do; I don't have a lot of options. It's no coincidence that I started reading more after my diagnosis. Everyone gravitates towards the things they are good at, and enjoy. Those things change for everyone, if maybe not so severely.

I can answer, Yes, I do like to read, and watch movies, and take down my thoughts, but I've only learned to like them. If they're trying to determine whether my choices are in some way genuine to my true self - and in that way, perhaps, less sad - I'll save them from wondering - they're not.

If you want to ask me a question, spit it out, bluntly. I don't want to waste time on dishonesty.

How would I have spent my teens and twenties if I had known what was coming? Do I only feel such regret because of how things ended up? How could it possibly matter? 

I got a new breathing machine yesterday; the first one didn't work so well. This one's better, and it has to be - the day will come when I can't breathe without it. It's mounted on a stand on wheels like an I.V. in the hospital. The last one came in a handheld case vaguely resembling a laptop bag. It seemed so easy - I could bring it on a plane or over to a friend's house. This one's much more daunting.

It's a rental from the supplier - there's a sticker that says so - a real vote of confidence to my longevity. I can't help but think that two short years ago, I was living in my own house, driving my own car, and walking (poorly) where I needed. The next two years will surely go as fast - it's hard to think about where I'll be.

 My eyelids have been fluttering. Imagine that. What happens if I can no longer blink?

Natty Update

I don't often give specific updates on my health - here's what's been happening.

I went to the ALS clinic yesterday after a Zoom call with my neurologist. It's been about 18 months since my last visit.

I weighed 122.5 pounds. Over the summer I weighed 119; June 2019 I was 114. My "natural" weight is at least 140. I'm eating more at my parent's house - everyone's happy with that.

A PT and OT checked the strength, tension, and flexibility in nearly every muscle from my fingers to my neck and back to my legs and ankles. As always, they're impressed and amazed with anything that works.

My lung strength and capacity have stayed relatively steady since my last visit a little above 60%. It's worse laying on my back.

My lung function has contributed to my difficulty sleeping, especially on my back. I'm getting a CPAP machine to maintain an open airway at night. It will take some getting used to, but if I sleep and feel rested, it's more than welcome.

The nutritionist once again talked about a PEG (feeding) tube as something to think about. The surgery and associated anesthesia requires a certain lung capacity they tell me. Sometimes people wait too long.

I'm getting a cup holder and phone mount for my chair, and an adjustable-height rolling table to eat and drink wherever I may be - like while watching a football game. 

My mom and I were in a fluorescent-lighted, windowless room for about 3 1/2 hours - a long time, but a Covid-induced improvement.