Tuesday, December 31, 2019

In 2019 I sold my house, sold my car, gave up my driver's license, got rid of almost all of my furniture, got two wheelchairs, and lost some more weight. And yet somehow it wasn't much different than the year before.

Sunday, December 29, 2019

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.

Friday, December 27, 2019

0-2 (Oh-Two)

I had lunch with an old friend the other day. He reminded me of a few things that we shared as kids. The things we did that no one else will ever share. We laughed at our mutual memories, inside jokes, and long-silent slang. He reminded me of 0-2, and although the audience for the following minutiae may be small, I wanted to better remember, so I wrote it down.

0-2 was a whiffleball variant game that some of the neighborhood kids invented. It served a very specific purpose. It was created for those times when we couldn't get enough guys together for a whiffleball game. 0-2 was ideally suited for four, and could be played one-on-one, while a proper game of whiffleball required at least six. There were many times as we got older that cars, girls, summer jobs, and maybe even schoolwork pulled us (some of us more than others) in every direction, and it became more difficult to get together. And of course this was the 90s, when kids and adults could be unreachable without alarm.

For those times when, after a dozen phone calls, and talking to a number of parents (or letting it ring ten or more times and returning to the group with "no one's home"), we were frustratingly short, we played 0-2. While we played whiffleball in my backyard (Dumont Diamond!!), 0-2 was created to be played on the site of the tiny hockey rink (Foley Forum!!) they built every winter, in the Foley's backyard across the street.

It was called 0-2 because that was the count. That was always the count. Zero balls and two strikes. Let me back up a bit.

There was a pitcher and a batter, and maybe an extra fielder. Behind the batter, against the side of the garage, sat an old aluminum and canvas lawn chair, facing the pitcher with a bike tire propped on the seat. The tire was tied down or attached somehow to make a circular strike zone. 

Everyone batted left-handed. That wasn't specifically the rule. The back of the house covered what would have been the entire left side of the field, and because nearly all of us were right-handed, we had to turn the batter around to avoid peppering the house. When the occasional natural lefty batted, he would be forced to hit from the right side, often slamming liners off the house. There was nothing we could do short of allowing them to hit from their natural side, (not an option).
The count was always no balls and two strikes, the batter was hitting from his unnatural side, and any pitch to hit or go through the bike tire was strike three. There were no bases to run.

If you're not familiar with our general whiffleball rules, (and why would you be?) we used only the skinny yellow bats and non-curvy, round-holed balls (from Mills & Greer!!). We allowed a certain amount of tape (usually hockey tape) on both the handle and barrel, enough to give the bat a better grip and a bit more weight. Occasionally, following intense debate, a bat would get banned for excessive barrel tape.

A batted ball caught or fielded before reaching the low, wire fence between the Foley's and the Churchill's was an out. Hitting the fence on the ground or on the fly was a single. Over the fence on the fly was a double. A ball landing on the Churchill's camper or garage roof was a triple. Over the garage was a homer. Fair territory was essentially the width of the yard. Any ball off the house (to the left) or into the woods (to the right) was foul. The game only shared a couple of things with our traditional whiffleball: two outs per inning, seven inning games. 

We played with ghost runners. There were no bases or running the bases. There wasn't room, and besides that wasn't the point. We had all of that across the street; this was a leisurely game, more of a whiffleball version of H.O.R.S.E.  Ghost runners means that you remember who's on base. Hit a single, man on 1st. Follow it with a double, runners on 2nd and 3rd. Although it prompts a lot of "4-2, one out, runner on 2nd" verbal reminders between batters, it's very simple and is unlikely to cause an argument.

I don't remember throwing a lot of curve balls. The batter was already at such a disadvantage, I think we mostly just hucked it in there. Another oddity, strikes (outs really, the batter always has two strikes) were determined by the bike tire, regardless of whether the batter swings. This created a strange circumstance in which the batter can swing and miss a ball outside the strike zone (bike tire) and not be out.

For a few years we spent a lot of time in that backyard, playing a little game that didn't matter, and shooting the shit all the while. We didn't keep track of wins and losses, hits, strikeouts or anything else. It was just a blip, long gone and mostly forgotten.

Thursday, December 19, 2019

On baseball

I watched Game 7 of the World Series the other day. Okay, it was like six weeks ago. I hadn't watched an entire baseball game in a long time. It ended at 11:55. 

I grew up on baseball. All of us in the neighborhood played and watched. I became a Yankee fan because my friend and his family were Yankee fans. In '96, when the Yanks came back from down 0-2 against the defending champion Atlanta Braves to win it all in 6, a bunch of the neighborhood kids went running up and down the street screaming. I didn't go out and join them, it was late and I was 12. My parents were asleep and would not have been pleased. 

Maybe it's a myth but I grew on a game in which the little things mattered. We were taught situational baseball: moving the runner over, the sacrifice fly, stealing bases, the hit and run, first and third plays, you know, the fundamentals. We were taught to shorten up when you have two strikes; put the ball in play, you never know what will happen. 

There is a movie called Little Big League where a kid tries to prove his baseball knowledge by answering questions like "runners on 2nd and 3rd, one out, Jackson at the plate, what do you do?" In fact, I found the clip, watch it yourself. It seems that these questions no longer exist. No one plays situational baseball. The answer is always "swing for the fences." 

There are just so many things that we learned in high school baseball, the fundamentals, the little things, that I rarely see in a Major League Baseball game. The game is so much more interesting with runners on base; for the pitcher and catcher, for the infielders, for the fans, and even for the outfielders. Without runners on base you may as well put a backstop, or a net behind the plate because you sure don't need a catcher. 

Without going into statistical geek-mode, there are more strikeouts, walks, and homeruns than ever before. And I don't know that I can argue with its efficacy, but all of it means fewer balls are being put in play, and the defense does even more disinterested standing around. Whether on the field or in the stands, runners on base turns up the excitement. Just to work in a hockey reference: defending with runners on base is like defending a power play, there is a nervous energy and the hope that you'll just get through it.

Why is this happening? Part of it is the Moneyball approach. And I don't think that's necessarily the appropriate name but it seems to have legs. Don't even think about swinging at the first pitch; work the count, a walk is as good as a hit. Stealing a base is not worth the risk of making an out. Make the pitcher throw as many pitches as possible. Tire him out; get him out of the game. Live by the mantra: outs are precious. Don't give away outs with sacrifice bunts, flies, or otherwise. 

That approach takes so much of the athleticism out of the game. It's like watching a quarterback that never throws deep, or the NBA eliminating the dunk. I want to see a play at the plate. I want to see the runner try to take the extra base, force the outfielder to make a perfect throw, and then tip his cap if it happens. Watch an old clip of Jackie Robinson leading off first and listen to the announcer's excitement. Every eyeball in the park is watching Jackie dance off first, hoping he goes.

Pitchers all throw hard. Everyone seems to want to be a strikeout pitcher, a Roger Clemens. Is anyone trying to be Greg Maddux? Would anyone with an 88 mph fastball and pinpoint control even make the major leagues? 

It's the same with the hitters. There was a time when middle infielders were known for their gloves. Ozzie Smith, and many before him, made the Hall of Fame for his glove. It seems that now, just to get a shot in the majors you have to hit 400 foot homers. Fans still love and revere Derek Jeter.  Derek Jeter was primarily a singles hitter who was not opposed to lining the first pitch out to right. 

NBA people sometimes say that everyone has become obsessed with drafting that superhuman athleticism. That's the Jordan effect. Skill level becomes an afterthought because "you can teach skill" but "you can't teach size, or quickness, or jumping ability". I imagine it's the same in baseball: flash gets noticed. Unless you're a catcher, fundamentals don't count.

Wednesday, December 18, 2019

Ramblings of a Sane Person

I googled "do women have less freedom than men?" not because I didn't know the answer, but because I wanted to see what the internet said on the subject. I read a few things, but nothing seemed to zero in on the areas I was looking for. Quickly, there is an episode of Master of None called "Ladies and Gentlemen" that is in the same vein.

A while back, amongst my ongoing ruminations, I began to think, How would my life have been different if I were a woman? And I don't mean in all of the obvious, surface level ways. 

I have a hard time believing that the male brain and the female brain are all that different. But I have realized that the way I would see the world, would be very different.

I used to revel in my independence. I think it was a big part of my identity for years. I never felt comfortable asking anyone for anything. So often I told myself you're strong, you don't need to lean on anyone. 

I've seen this referred to as an aspect of toxic masculinity. Which of course sounds like a new-age liberal, quasi-feminist man-hating label. But is most definitely a real sociological occurrence that can be partially described as "be a man" mentality.

When I was in college I walked everywhere; I've mentioned this and it is certainly not unusual. I walked to class, to work, to friends' apartments, to parties, to the bars. Most of the time I was alone. I don't know how many times I walked across town from a friend's place or a party, or walked home from the bars, just about always after midnight and often after 2. Again, I am definitely not alone in this, and I never gave it a thought. 

I was walking back to my hotel from a brewpub in Syracuse at maybe 10. It was Empire Brewing; I had a flatbread and a nitro stout. I would've had a second beer but it was packed and the bartender was too busy ignoring me and sneaking sips of vodka. This was the spring of 2012, post-diagnosis. 

I'm midway through the mile or so and a guy yells to me from a distance, asking for some change, saying he has to make a phone call, asking to use my phone. I looked up at first, startled, but didn't acknowledge him and kept walking. He was walking towards me from behind and to my left, and repeated himself, annoyed that I had ignored him. I felt scared and I didn't look back. I was very aware of the situation: if this guy wanted to rob me or cause me any sort of harm, I could not prevent it. If I tried to run I would fall. If I didn't fall I would be moving so slowly that he would easily catch up. In my mind, my fate was being handed over to him.

I never used to feel that way. Granted, walking alone at night in an unfamiliar city played a big role. But I had never felt so vulnerable. And that fear made me paranoid.

As time has passed and I have become less capable, I have encountered these feelings more. I have been shown all of the freedoms I had not considered.

And I began to think about all of the people who don't feel they have those freedoms. I remember a Dave Chappelle story about the time a gangster (drug dealer, whoever) paid him 5 grand and he rode the subway to Brooklyn at 4am with a backpack full of cash. This was when he first moved to the city, was 17, 18 and knew that people would kill for that backpack. The punch line is something like, "So that's when I learned what it's like to have a pussy." I would say, "be a woman" but I'm sure that's not what he said. 

That bit struck me: he had never felt that vulnerable because he never had anything anyone wanted. And by his logic, women always have something men want. And so the fear must creep in. And so you must do your best to avoid those situations.

And so I think of my own life, in this one little area of independence, and I know how different it would've been. It is just assumed that women don't do those things. Walking alone, at night, you're just asking for trouble. And I'm not saying that you should, or that anything will change. I'm only saying that I recognize the privilege of that freedom.
If the next time you ask how I am, or how my parents are, I say "shitty", will that be the end of it or will you ask more questions? 

Wednesday, December 11, 2019

It's almost inconceivable that my right arm was ever good for anything. For a long time it has been dangling at my side with little purpose. 

But I have pictures, and if I really try I can remember long-tossing with Perch at Smalley Park, (that's throwing a baseball for those unfamiliar; playing catch from as far as you can), or muscling a 3-iron within inches of a hole-in-one on #10 at BCC (that's 230 from the black), or spending all morning on the slicer doing everything from tomatoes and mozzarella, to ham and pastrami. I remember squatting down to pick up a tray of iced-tea highballs complete with lemon wedges and full to the brim. 

I'm really not sure that I can remember. I know that I did all of those things, but I can't imagine what it felt like. 

It wasn't me doing those things. I'm only watching someone else's memories. 

Monday, December 9, 2019

When I was diagnosed I was prescribed antidepressants; I didn't ask for them, that's just part of the deal. I took a couple different ones for a while, a year or two I guess. I don't really know what they did. One, and maybe both of them, when combined with the other drugs I was prescribed, messed with my gait, the way I walked. I remember feeling a little woozy when driving, like, Is this real? Am I really driving? Several years ago I stopped taking them, weened myself off of them if I recall. Or maybe that was something else; doctors are all about weening.

Over the years my doctors have asked me, "Are you depressed?" to which my best and most honest response has been, "Shouldn't I be?" And that is the distinction no one seems to make. And I know that it's an impossible, and with the way things seem to work unnecessary determination. How do we determine who needs these medications? Are we going to give them out like candy until all of us can't function without them? Maybe need isn't even the right word.

Whatever the problem is in your life, antidepressants aren't going to fix it. Maybe they help you get through the day, or maybe you take them because a doctor prescribed them and now they've become a new normal. Or maybe they make you feel better and I'm way over-thinking it. I don't know all of the answers, and sometimes I do need to hide from reality, but it seems I shouldn't be hiding all the time. Or maybe I'm just jealous of all those people with seemingly fixable problems who can't find their way out of the dark. And at times in my past I've been that person. And I'm jealous of myself.

Thursday, December 5, 2019

I saw Ford versus Ferrari last night at the Marquis in Middlebury. I'd never been there; I like it. 

In the process of buying tickets we were informed that the showing was upstairs, and this being an old building in downtown Middlebury, there is not an elevator. So I had a look at the stairs, and we discussed how we might get me to the second floor, (in the wheelchair or on foot with some assistance). Then the guy behind the counter, seemingly without checking with anyone, offered to change the theater for us. Minutes later both chalkboards were being erased and rewritten. And that's how it came to be that all of those Frozen 2 patrons had to use the stairs.

The movie was at six and we showed up early to get some food first. Yes, they have that, real food from an actual kitchen. It's Mexican. And by the way there is a full bar as well. There is also a dining room, complete with a projector on this night showing an episode of The Simpsons. Quick sidebar, just before leaving the dining room for the movie, presumably at six, in walked a woman who fiddled with the projector, or maybe the laptop it was attached to, and the next thing I know Christmas Vacation is about to start. Oh man I almost didn't want to go into the theater. There is a bar, as I said, and food and drinks are allowed in the theater. I know this isn't completely uncommon, but I find the idea of stepping out mid-movie to grab a fresh beer to be both unheard of and glorious. 

So I guess what I'm saying is that although most multi-plex theaters have no character, charm, or reason to visit over any other multi-plex theater, this one is different. I like different. 

Oh and the movie was good. I'm not used to sitting in a movie theater seat, (how do tall people sit in those seats?) for 2 1/2 hours without interruption, but I survived.

Saturday, November 30, 2019

Did you ever think about all those little personal grooming things that you and only you have ever done? Brushing, flossing, shaving, combing, clipping, plucking a hair from...wherever. I stopped wearing contacts years ago because I ran out and realized that I couldn't do it anymore. It's a good thing I don't have a face full of zits to pop. I wouldn't want to make anyone do that. Gross.

Tuesday, November 26, 2019

How old do you feel? Do you see yourself as the age you are?

I don't think that I do. I don't think that I can. I don't have any of the things that would allow me to see myself as an adult. House, car, job, wife, children; I don't have any of that. 

House, job, car; those are easy, I've had those. Wife is a distant planet. And there isn't a single tiny little piece of me that identifies with having children. 

My hair is still pretty thick and despite close examination of my temples, I have yet to find any gray.

I think I'm stuck in a delusional post-college 20-something world where nothing matters and the future is far off and best ignored. I'd like that to change, I'd like to move on, but I don't think I can.

Thursday, November 21, 2019

A friend told a story the other night, one I had forgotten. We were at 3 Needs, in the old location on College Street. No doubt it was well after midnight and I was sitting in a booth with a Chocolate Thunder Porter (or some other beer, but that was a go-to as well as a memorable name). A bouncer approached the table, saw me and said, "All you gotta do is stay awake." I looked up at him and nodded while my friends laughed endlessly. I guess I had dozed off.

Wednesday, November 20, 2019

The last time I parallel parked was in October of 2018. I drove to Burlington and met up with a friend for the Aziz Ansari show at the Flynn. I parked on the north side of College Street just below St. Paul. Despite my difficulties in turning the wheel at a dead stop, and the fact that my car was a stick shift, I made it in on the first try. 

So that was the last time, and the last time.

Tuesday, November 19, 2019

It's wood burning season again. 

I'm living with my parents now, and there's so much that I don't need to do. I get up in the morning, have a seat in the kitchen, and my mother makes me breakfast. 

Last year at this time, and for each of the last five years, I would open the wood stove, rake the coals, and add wood and/or kindling, and begin to turn smoke into flames. I would tend the fire all day, cycling through new loads of wood, and filling the stove before bed. 


Rarely did I let the fire go out. Only if I left for the night, or we got a warm stretch and I decided to give it a break and burn some propane. Had I severe OCD I would've kept daily burning stats: weather information, amount of wood burned, temperature in the house, etc. It'd be nice to know those types of things, but I would not be the one to keep track. 


I know that lots of people burn wood as their main source of heat, and of course I wasn't the one cutting, splitting, stacking, and hauling the wood indoors, but looking back, it was a big deal for me. It's different than clicking on a thermostat, it’s a metal box with a chimney. You light a fire in the box, shut the door, and adjust the airflow. It doesn't need electricity, doesn't need internet, it only needs wood to burn. And as people have for thousands of years, you get to sit and stare into the fire. I'm glad I had that experience.

Sunday, November 17, 2019

This may be obvious but one of the reasons I write this blog, and write emails, and write Facebook and Instagram messages, is that it's difficult to express myself verbally. When speaking I try to be as concise as possible. I filter out the majority of the thoughts in my head. In groups, I end up sitting silent for long periods. It's very frustrating to tell a story when you have to stop and repeat every fourth word. It's much easier this way.

Friday, November 15, 2019

I've learned a few more things about life in a wheelchair. 

Walking is exercise, sitting is not. Walking in public places, whether outdoors in the cold, or indoors in a grocery store, keeps you warm. I am already susceptible to the cold, given my lack of muscle and fat, and not exerting any energy is noticeably colder.

Being lower than everyone sucks. Now I know how dogs feel. My head is at everyone's ass level, which believe me is mostly a bad thing. 

Just because a wheelchair is a chair doesn't mean that all other chairs are obsolete. I can stand and move to another chair, and I probably want to.

Everyone apologizes. Yes, you are in the way. No, you didn't see me. You don't need to apologize like "Oh my god I'm so sorry I must be the only person who didn't see you!" Car accidents result in fewer apologies. 

I feel both hugely conspicuous and invisible at the same time. Some people see me, look me in the eye and acknowledge me, while others seem never to notice me or pretend not to see me. Maybe this is the same for anyone and I'm paranoid. The brain can wander when you're sitting silently, moving through a crowd. Or maybe I'm right to feel different. If you see someone who is an anomaly for one reason or another, maybe you could try to smile and nod instead of looking away. No one needs to feel like a freak.

Wednesday, November 6, 2019

I got a flu shot on Tuesday at Kinney's in Hinesburg. I hadn't been in a drug store in a while and it got me to thinking. 

Why are drugstores so effing big? Why can't they be like the size of a gas station? With a waiting area, a counter, and "out back". Why are they selling eight varieties (I didn't count but there were a lot, including multiple children's models with flashy trademarked names) of snow shovels across the street from a hardware store? I know the answer: because they have the space! But why do they have the space?

Why is everyone in there overweight, underweight, or old? I saw a guy walking in wearing the smallest fashion-forward, tastefully (but not really) torn jeans I've seen on a man. And they fit! I didn't know you could buy men's jeans like that; maybe they were his girlfriend's. Or maybe despite the fact that he looked like a 30-year-old meth-head, (like I really know what a meth-head looks like) he is in fact a 5' 10", 110 pound 14-year-old.

And why must they be so goddamned depressing? Is it the fluorescent lights, the lack of visible windows, the uninterrupted silence (outside of the musical intercom that inexplicably makes it worse), or is it all of those things?

It's all of those things and more. Somehow they've taken the worst aspects of a hospital and a grocery store and combined them. Granted, it's been a long time since I was in a Walmart. But at least those places have some life to them. Maybe it's more like a doctors office; no one seems to want to be there.

I could hear a song on the intercom, one that I would otherwise enjoy, and in that boredom factory it was powerless against its sterile surroundings. If there are zombies living among us, that's where they go.

Tuesday, November 5, 2019

I don't eat soup. At least not with a spoon. I actually think it's pretty stupid to eat a liquid with a spoon, but I get it; soup's not really a liquid. I'm better with a stew or a chili. It may not seem all that different, but it's much easier to keep on a spoon. 

When I go to a restaurant or get takeout I don't first think of what I'd like, instead I think about what I will be able to eat. Fork foods are good; you know, things I can stab. Hand foods can be hit or miss. I'm usually okay with pizza, a sandwich can be a little more challenging, a piled-high cheeseburger or other hot sandwich (the kind of thing you can't fit your mouth around, that is likely to be a mess for even the most efficient of eaters) is pretty much off my wish list. I can sort of handle tacos but it's always a mess. Given a menu of choices, usually it's not too difficult to find something agreeable.

I also occasionally exhibit an involuntary cough/choke/spit, so, you know, look out for that.

Sunday, November 3, 2019

After it came out on VHS (in 1991?! How long does it take for a movie to go to video?) a few of us neighborhood kids argued over who could watch Teenage Mutant Ninja Turtles the most times. My brother and I watched it a lot, well into the double digits. 

I watched it on Amazon a few months back. Still good.

Just to bring the nostalgia home: T.U.R.T.L.E. Power! by Partners in Kryme

Saturday, November 2, 2019

I'm in my room after having taken a shower and I hear my parents talking to someone in the kitchen; a friend stopped by. My mom says, "I have to go help Nathan get dressed," and I cringe. Somehow I'm still embarrassed and/or shameful about my failing health.

Not that it should matter, but she helps me with my shirt and socks. See, I still feel the need to explain myself.

Wednesday, October 30, 2019

I'm very tired of people thinking that I am stupid. I get that you can't understand my words, but that does not mean that I am wrong. You could at least try to listen before dismissing me and assuming that I don't understand the simplest of instructions. I am not stupid, you are stupid. 

I'm also very tired of people looking at me as if I were a child. Or a dog. Or some other unintelligent being that doesn't know you're full of shit.  I can see, and hear, and understand. I am an adult. Maybe you are not.

Monday, October 28, 2019

Saxophone


I've gotten rid of a lot of stuff over the past few years: bike, basketball, hockey skates, stick, and gear, skis, boots, and poles, and countless other things. One item I still have is my saxophone. 


I was thinking: what was I best at? If I went by other people's accolades, playing my alto sax would be high on the list.

It's also very high on the list of things I was most enthusiastic about. For a time. In the 7th, 8th, and 9th grade I couldn't get enough.

I spent the entirety of the 6th grade and perhaps half of 7th grade playing the clarinet. The school wouldn't allow 6th graders to play the alto sax. Actually one kid did play the alto sax in 6th grade. I won't name names but I imagine his parents threw enough of a hissy fit that someone caved. He practiced with all of the clarinets in the cafeteria where we lined up single file in chairs in front of the stage. There must've been at least 30 eleven-year-olds making mostly horrible noises. There's no knowing how many wanted to play the saxophone, but by the time I was a senior in high school and perhaps earlier, that horde of clarinetists had dwindled to two lonely girls. And me on sax. Three total. And not that they were lonely, I just liked the juxtaposition of "lonely" with "horde".

I didn't start out on the clarinet with plans to switch to the alto sax. In the 5th grade, when the music teacher played the sounds of a bunch of instruments for us, I liked the clarinet. That cassette, or whatever it was, didn't include any saxophone sounds. Those thoroughly coordinated sneaky bastards.

I remember when I first got my sax, midway through the 7th grade. It was a rental from that place in Bethel, Ellis Music. But you knew that. I remember opening the case in my basement (where I practiced) and just staring. I was mesmerized. By the shiny new object. I was 12.

I'm not sure why I decided to pick up the alto sax, but a few things are for certain: it's louder, it's cooler, and in most respects it's easier. A clarinet is made to be played at a low volume in a small room. The alto sax, though not as beefy as it's cousins the tenor and the baritone, is almost unbearable in a small room. 

In the 7th grade, louder is better. I didn't want subtlety, I wanted to stand out.

Just a quick aside, the reason I think the saxophone is easier than the clarinet is mostly because a sax has keys that you push down while a clarinet has holes that have to be covered with the requisite fingers. If one of the holes isn't covered properly, a clarinet produces nothing but squeaks and squonks. Squonks are the lower octave.

Because it was so loud, I always practiced my sax in the basement or garage. I spent my first days making up little riffs for hours in the basement. I still remember, and can do the fingerings for one particularly righteous riff I taught myself before I even knew what the notes were.

Playing in the traditional band always felt anonymous. The music didn't excite me (for the most part) and it always felt so serious. There was no room for personality. No one was pumped to see the high school band play. This was the opposite of what I think most people consider art. Not to say that there wasn't a great deal of skill involved, but tracing the Mona Lisa would also take skill.

I think I wanted to be me. When, in the 6th grade I started going to jazz band after school, (with my clarinet) I found the fun in playing music. 

The first songs we learned were "Now's the Time" (Charlie Parker) and "Mr. P.C." (John Coltrane). There were no arrangements; all of us played in unison besides the rhythm section (piano, drums, bass if we had any, guitar if we had any). It couldn't have sounded any good, but that didn't matter.

I carried my sax (and clarinet before that) to and from school every day. I practiced every day. I didn't need to be told to; that was one part of my homework that I wanted to do. In high school we had practice sheets (for band, not jazz band) that had to be signed by a parent, attesting that a kid practiced for 30 minutes each night. We had one-on-ones with the teacher (again, in band) where she would ask us what and/or how we practiced. I told her that a lot of times I just played. Whatever came to mind. And she was mostly okay with that. She knew I had very little interest in band and the alto sax's role in an orchestral band is nearly nonexistent. 

We would have "small combo" jazz performances at student art nights and (for some reason) in the middle school lobby. I have, or had, some old Polaroids of us in the art room: a couple trumpeters with mid-90s bowl cuts, a trombone or two, and two or three saxes. Not pictured: a drum kit, piano, and maybe more. I don't have the pictures in front of me, but the bowl cuts I’m sure of.

Our concerts were always in the evening, and the jazz band always performed last. (Do you think that was because jazz was lowest on the totem pole, or because had we performed first, the rest of the night would've been too much of a let down? Very likely it was both.) I was always so excited after shows that I would talk non-stop to (more like at) my mom and often my mémère for as long as they could tolerate it, at the school, the entire ride home, and at home. I don't know how I got any sleep afterwards.

We played the jazz fest every year: on weekday afternoons at various outdoor stages on Church Street, and at least one year at Contois in city hall. I have a recording from one of those street shows; my mémère brought her handheld cassette recorder. That was in 8th grade. We played James Brown's I Got You (I Feel Good) and I ripped off an incredible (I'm not a braggart, I've listened to it many times, it was damn good) solo. 

We played in the state jazz band competition every year: in middle school at Memorial, and in high school at the Flynn. Those were always a lot of fun. We would spend most of the day (a school day!) at the Flynn. There was just so much glorious down time. We hung out in the dressing rooms, got sandwiches at KKD, and sat and listened to a new school every half hour. Each band played three songs, and while there were always a few repeats, and some groups were better than others, we all got to spend the day watching a lot of talented musicians who masqueraded as high school students.

I don't remember every song we played. There were some old standards, (think Duke Ellington, or big band) some of those Latin jazz songs that were always a blast to play and whose names I've entirely forgotten, and some crowd pleasing funk like What is Hip? and Pick up the Pieces. Yes, those are links. Enjoy.

I even had the chance to play, along with seven of my classmates (five of us freshmen), on a couple of songs behind Trey Anastasio and his band. I believe we were introduced (by Trey) as the South Burlington High School All-Stars. The show was a benefit for C.O.T.S. at the Flynn, on a Monday night I believe. We were (I think I can speak for everyone in this regard) all so nervous knowing Trey would introduce each of us for a solo, we spent a lot of time pacing around the dressing rooms trying to at least form an idea of what to play.  We were on stage for maybe ten minutes and watched the rest of the set from backstage. Trey brought out Mike, Page, and Jon (of Phish) for an encore of Further On Up the Road and Voodoo Child. And of course Dave Grippo (our band leader) ripped two incredible solos on his alto. 

It was a great experience for all of us. I came away with a photo of the horn section on stage, a double CD of the second set, and a signed back-stage pass.

I got so many accolades after jazz band performances, (from parents but also from fellow middle/high school Kids, imagine that?!) that it's incredible that a bell didn't go off as in "I like this, I should take this more seriously." But I never did. It was a lot of fun and that's all I wanted at the time. I never considered it more than that. As with most things in my life, I never looked ahead. Am I going to do this in college? Do I want to do this for the rest of my life? I never gave it any thought. Eventually, like a lot of things, it became less fun.

I shouldn't say that it became less fun, because I think it was always fun, but in time I became less obsessed and more distracted. It was easy to spend a half hour, an hour, or even two hours tearing the roof of our garage (so to speak) when I was 12, 13 years old, but as I got older, other things started to creep in: after-school sports, part-time jobs, cars, girls, friends, even homework. 

I played in a band in college (shoutout to the F2 superfans) with some friends and rediscovered the fun in playing music. I got my hands on a tenor (thanks Kev) and realized how much better (and easier) it fit in with a guitar and bass. You know those typical portrayals of a teenage garage band where there always seems to be a fight for control? That wasn't us. We really had a blast hanging out in the basement. I do wish I had spent some time with a bari (that's the one Lisa Simpson plays), at least in part because I would love to be the little guy with the giant saxophone. 

It would've been so great if only all of us had more time for it. But we were in college, working part time jobs, living in tiny spaces, without the time or the collective obsession that I had many years before. I don't remember our last time playing together; things petered out at some point.

So there in the basement my saxophone sits, unplayed for almost ten years. Thanks for the memories, old friend.

Sunday, October 27, 2019

Do you ever have dreams that give you hope? Or dreams that make you anxious? Are they rooted in reality? Or completely off the wall?

In my dreams, I may see people I haven't spoken to in years, I occasionally even see my brother although I think I know, in the dream, that he is dead. It always seems as if I am normal and healthy, but I always know that I am not. I rarely awake disappointed because although I may mistake a dream for reality, it's never the reality that I want. 

Friday, October 25, 2019

I saw an old friend in a grocery store maybe six years ago. She looked at me kindly and said "How're you doing?" I responded "Still vertical" with a sheepish grin.

Not anymore.

Wednesday, October 23, 2019

I've been meaning to write about this for a long time: The idea that every day is worse than the day before. With time, my ideas of health and normalcy have changed. In 2011-12, I thought my health had gone to shit, and compared to previous years, it had. But when I look back, I got by okay. 

Most of the time people didn't even know that anything was wrong. And that was my priority, hiding and protecting myself. Instead of letting everyone know and accepting whatever the response would be. 

I've always been good at protecting any of my vulnerabilities, putting up a giant fence and pretending I'm bulletproof. I have a distinct memory of a girl in middle school telling me, "You're so conceited." I certainly acted conceited, but that was only an attempt to protect myself. From all of the shit I had taken growing up as the youngest kid in the neighborhood, and the smallest kid on the bus. 

I was one of those "Is everything okay?" "Yes" before you could even finish the question. I've never been any good at giving or receiving compliments. I've never been good at telling people how I feel. I've often struggled with even knowing how I feel without having to first figure out how the world feels. Even as I knew it wasn't important, I still needed that validation. I needed to know what others thought before I could be confident in what I thought. 

I of course wish that I had the easy confidence that I portrayed, in myself and my decisions. I wish I could've been proactive rather than reactive.

I feel like I'm always going to be remembering yesterday, wishing I had done more. One day I will look back on today with the same feelings. But it's just so difficult to appreciate what you have when you already feel that you have so little. 

Friday, October 18, 2019

"Money isn't real, George. It doesn't matter. It only seems like it does." That's from Ray Liotta's character in Blow.  I always liked that line, but now I see it from a different angle. I have a really hard time caring about anything other than my own health. There is a reason why for centuries the promise of improved health has been used to pilfer money from the masses. The UVM Alumni House, (the Edward Wells house, formerly Delta Psi) was built in 1892 thanks in part to the success of Paine's Celery Compound, a patent medicine of 22% alcohol and a hint of cocaine. A bit off topic I know, but I had to get that in there.

I would gladly spend any amount of money if it would improve my health. If I were told that I would be in debt for all of my life, would always struggle with money, and that I would work for all of my life trying to repay my debts, I would take it. I wouldn't have to think about it. 

Money doesn't solve every problem. I understand that everyone needs money for the most basic of needs, but sometimes I have difficulty seeing the value in it.

Thursday, October 17, 2019

Often when I sit for an extended period of time, one (I don't necessarily think that it's always the same one) of the vertebrae near the bottom of my spine comes out. When I stand it can feel like my hip is coming off. Put another way, when I lift my foot off the ground my leg gives a sense of dangling there. I have to (multiple times per day) arch my back and push my hips forward to (sometimes smoothly, often not), pop it back into place.

Friday, October 11, 2019

I went to a wedding this past weekend. I don't hate weddings as much as you might think. I'm not sitting there seething with jealously the entire time. But I certainly don't enjoy them the way that I would like to. The best part for me is to see old friends; the people I would almost never see otherwise. Sometimes I get emotional when they ask how I'm doing. I stare deeply at them and my eyes well up. I shrug my shoulders and respond with a underwhelming "Okay".

I went to the wedding in my wheelchair; the one that folds up and weighs next to nothing. I can't really move it on my own, except using my feet. I'm not like one of those people with buff arms self-sufficiently wheeling around. I got out of the car, sat in my chair, was pushed to the wedding site, had a jacket put on me because it was miserably cold and windy, and sat there until the ceremony was over. I could continue but you get it.

The reception was the same; plop me down at a table and people come to see me. With most of them it's the same, they ask me questions and I don't have any answers. And they can't hear me over the talking and music anyway. I'd like for people to just come up and tell me what they're up to. It'd be a lot easier that way. 

It's very easy to get stuck in a one-way conversation that is going nowhere. One where I look and act completely uninterested while the other person struggles to hear anything I've said, and with any luck gives up and leaves me alone.

I still feel everyone's eyeballs when I'm in the chair. Some people definitely give me special attention. I might actually enjoy it if I could express myself better, but I am not suave, I cannot schmooze, I can't even embarrass myself with a story that starts with "Funny story" and ends in silence. 

So I observe. I watch and I listen and occasionally, if only for a few moments, I am hugely entertained. By somebody's outrageous dancing, an obvious moment of drunkenness, or by watching the stern, "I will not be having any fun at this wedding" guy standing alone in the corner and wondering whether his wife will successfully drag him on to the dance floor. She did. And good for her. Do you have to be so serious all the time? Can you let your guard down for a little while? It's a wedding not a middle school dance. What are you afraid of?

People come by and sit. Some of them feed me gossip; some feel an obligation to keep me company.