I hope this blog post finds you well

rock on.

I have what is called Young Onset Parkinson’s Disease (YOPD). I don’t know what the cutoff for “young” is, but I was diagnosed when I was 45. Today I attended my first big Parkinson’s event: the Georgia Optimism Walk. (Other diseases get to race for a cure, but people with the Park aren’t very fast and there isn’t much hope for a cure, so we just get to walk for optimism, I guess.) There were a lot more people without the Park than I expected, people in athletic gear who came to walk with vigor, not slowly clomp around like a Frankenstein. And there were a lot of old people. People with canes, with wheelchairs, with those little walkers that you can also use as a chair. The majority of the vendors were for elder care/assisted living/hospice companies. It was a glimpse into my future. And at first it unnerved me.

Since being diagnosed, I’ve struggled with staying positive about my future. I think about my uncle, who had Parkinson’s and who died way too soon. I think about growing old alone and wonder how long I will actually be able to live on my own. I worry. But after attending the walk today, I came away actually feeling motivated about my long-term future for the first time in a long while. It was a big help seeing people, both with and without the Park, being happy and energetic and motivated. It felt good being outside, which made me feel more confident in my summer goal to go camping and to spend more time outdoors. My life will never be what I thought it would be even just a couple of years ago, but I feel better about what it can be. And I found out that if I raise enough money, I can get a medal. I want that medal. I will use all the resources at my disposal. I will make a difference for people with the Park. And I will get that medal.

#Parkinsons #Optimism #BonJoviBridge

I didn’t know. I had no clue. All this time, I thought the idea of owning a tactical EDC flashlight to be patently absurd. Why would I ever need 1300+ lumens? Is 1300 lumens even a lot? I have no way to contextualize what 1300 lumens even means. Until today.

I take prescription meds for Parkinson’s and depression. The Parkinson’s meds can cause addictive/compulsive behavior. I don’t drink and sports gambling is illegal in Georgia, so I online shop too much. I recently changed depression meds, and now I don’t sleep. I’m up all night tinkering with my tiny keyboard or my tiny computer and eventually I see an ad or get a thought in my head that leads me to spending $100s of dollars at two in the morning. Usually I end up canceling my order or returning what I buy. But last week I went a little overboard with my online spending.

Tweeting about tactical flashlights makes the algorithm send me ads and affiliate link spam articles about tactical flashlights, and as it turns out, one flashlight company was having a pretty good sale. I got a flashlight, a charger (that can charge other USB devices), and a free tiny flashlight. The tiny flashlight sold the deal for me. Now I have a tiny flashlight on my keychain. It joins my tiny Hydro Flask, my tiny keyboard, and my tiny wireless trackball as the latest member of my tiny everyday carry. Just look at how cute the little guy is!But the tiny flashlight was just a bonus. The tactical flashlight changed my life. When I saw how it illuminates a dark room, I knew that I had discovered something wonderful. I had uncovered a beautiful new facet of the universe. Look at how bright this thing is.The room is completely dark, but the flashlight beam is bright enough that I can read the spines of Volumes I-XX of the OED from across the room. This is what the discovery of fire must have felt like. I feel powerful. Indestructible. I want to start dressing like Oppenheimer. And if any of you think you can sneak into my house at the night and steal one of my weighted blankets, think again. The darkness cannot hide you from the tactical EDC flashlight. Unless I forget to charge it, because I guess the battery only lasts like seven minutes on the highest power. But during those seven minutes, I am the modern Prometheus.

#flashlight #tinyedc

I have a patio area in my backyard. I call it the party patio. It has a fire pit, Adirondack chairs, a picnic table, and I recently added flowers and an umbrella with LED lights. It’s pretty awesome. But I rarely use it. The only guest I have ever entertained on the party patio is my dad, who will sit by the fire and smoke a cigar. But today, when I went out back to throw a bag of cat poop into the garbage, there was a woman in my backyard.

She was sitting at the picnic table, decked out in St Patrick’s Day green and beads, drinking something from a stainless steel mug. She got up and introduced herself when she saw me come out of my screened-in porch (the non-party patio.) She came with a girlfriend from North Carolina for the Savannah St. Patrick's Day festivities. She’s an ocean girl, not a mountain girl, and she loves SCUBA diving and her 16-foot boat. She gets a lot of carpenter bees at her house, but she wishes she had more bumblebees. (She told me this as she stood watching a bumblebee gather pollen from my party patio peach tree.)

She explained that she was walking through the neighborhood and thought that the person who had my backyard must be really cool. That my

🚨I INTERRUPT THIS POST WITH AN IMPORTANT MESSAGE 🚨

I am typing this on the party patio and the woman just came back. She asked me if I was married, told me her husband recently died of cancer, and then she invited me back to the house where she’s staying for dinner. I declined, as I already had leftover frozen pizza for dinner. She said she might be back, then she picked up her can of Michelob Ultra and left. I thought this story would have an ending (woman left and I never heard from her again), but apparently not yet. I should have gone to Asheville this weekend.

I write this a broken man. I am typing this not on my tiny (40%) keyboard, but on a small (60%) keyboard. I ordered new switches for my tiny keyboard and I got a little overeager and disassembled it so I can install the new switches the moment they arrive. But having to type on a non-tiny, non-ortholinear keyboard is not my biggest problem. My magic bracelet isn’t working.

Without my magic bracelet, I don’t know how I’m supposed to feel. Did I get enough sleep? Should I take a nap? How hard should I row? Do I dare eat a peach? Am I even in the physical condition to make generic and uninspired Eliot references? I don’t know. Without my magic bracelet, I am helpless.

There was a time when I didn’t have a magic bracelet. I kept track of how I was doing with a mood-tracking app. I logged my mood for 1137 consecutive days. 595 of those days were Meh. (On a scale of Rad (6 days) to Poop Emoji (27 days), Meh is right in the middle.) Logging half of my days as Meh didn’t help me pinpoint my struggles. It just made me aware that I was dissatisfied with life. Mood tracking was valuable, I guess, but it didn’t help me get any better. When I was diagnosed with The Park, I knew I would have to make changes in my life, especially concerning sleep. So I tried all the major options for sleep and activity tracking.

I tried a Fitbit. It was garbage. I don’t care about how many steps I clomp, the strap would get all nasty when I exercised with it on, and the sleep data wasn’t that useful. I bought a new strap for it and gave it to my mom. Then I tried the magic ring. It was okay. The data was more useful, but I didn’t like the ring. I’m not a ring guy. I don’t have the charisma to be a cool ring guy, and I’m too self-conscious to be a shameless dirtbag ring guy. There is no in-between ring guy. I was in limbo. Like a jilted lover, I returned the ring. I thought about trying an Apple watch, but I don’t use an iPhone. And when I used to wear a smartwatch, I got too easily distracted by it. I don’t need a screen on my wrist feeding me notifications and demanding that I get up and clomp around. I don’t want to be judged by my watch. Finally, I tried the magic bracelet.

The magic bracelet doesn’t have a screen. It doesn’t care how many steps I clomp. It doesn’t tell me when I need to be active. It just tells me how I’m doing. Did I get enough sleep? Then I’m in the green. Am I in the yellow? Then I might want to take a nap. If I get into the red? Then it’s time for yoga and meditation and maybe a relaxing soak in the tub. I have no idea what determines whether I’m in the green, yellow, or red. I know it’s a combination of sleep and stress and activity. And I know it’s usually right. On green days, I can go hard on the rowing machine and still feel great. Nights without sleep and long days at work lead to red days. A stressful day of frantically clomping around a school puts as much strain on my body as a workout. The magic bracelet knows this, and it does not judge. It provides information to help me reach my goals. If I don’t reach them, it gives me suggestions for what I need to do the rest of the week to make up for it. There are no missed steps, no unclosed circles. It is the perfect device for those of us who struggle with consistency and are easily disheartened by criticism.

Is it bad that I need a magic bracelet, that I lack the willpower to improve myself on my own? Probably. But it is what it is. I live alone. I don’t have friends. I hate going out, and I especially hate crowded gyms. I know the Park will take years off of my life. I won’t live long enough to retire, have grandchildren, or own a home in a Margaritaville active adults senior living community. I could easily let myself sink into my depression, never exercise, and stay up late every night scrolling RSS feeds. And there are some days when I do that. But as easy as it would be to give up, I don’t want to. I want to get better. Not in the rah-rah sense of “I‘m going to beat this thing!” I’m not. The Park will kill me. But not this day. I can keep going. I’ve lost weight and I feel more energetic than I have in years. The magic bracelet works for me.

But my magic bracelet is broken. This first happened a month ago when I was in Nashville and I was sent a replacement, and now it’s happened again. Perhaps the magic bracelet is actually a piece of trash. But do you know what else is trash? My body. The magic bracelet and I are made for each other. We both try our best and will work really hard for a little while, but eventually we’ll both end up in a dumpster behind the Best Buy.

The other day I wrote about toast. About how toast with peanut butter is helping me lose weight and stop eating breakfast at McDonald's every day. This was significant, not because of the topic, but because I was actually writing something.

When I worked at the mall unloading trucks, I was a writer. I would write every day, or almost every day. I wrote about the mall and its people. The Black Friday shoppers, the mall walkers, the Pooper. I would also write movie reviews, book reviews, political commentary, year-end best-of listicles, and whatever else struck my fancy. I was even internet friends with some real writers. Several years ago, one of those internet friends was giving a talk in New York City. I remember thinking, “That guy used to compliment me on my writing. Now he’s giving professional talks and editing a literary website, and I don’t even write anymore. What happened to me?” What happened? I’ll tell you what happened: I became a high school English teacher.

As a teacher, I taught writing, I assigned writing, I graded writing, but other than the occasional Goodreads review, I didn't actually write myself. While the surreality of the suburban American mall was a constant source of inspiration for me, high school was just a place where I went to work. Maybe the amount of time I spent grading writing and figuring out how to teach writing turned me off of writing. Maybe I didn’t feel like I could write about school the way I could about the mall. I was too inexperienced to write critically about teaching or education writ large. And students are just kids; they don’t deserve the same level of scrutiny as the guy who worked at the Verizon cart and would come into our store every day and poop on the bathroom floor. Whatever the reason, becoming a teacher ended my writing life.

There were, however, a couple of moments where the writer within me tried to awake. Twice within my first four years of teaching, I attempted the challenge of National Novel Writing Month (NaNoWriMo) to write a 50,000 word novel during the month of November.

My first attempt was a sci-fi novel about a boy who befriends an alien. The bulk of the novel took place on a cross-country train ride because they had to travel from Delaware and they couldn’t sneak the alien through TSA. Oh, and the alien couldn’t speak, so he communicated with the boy by stabbing a conductive metal rod into the boy’s neck so they could communicate by exchanging brain waves. I gave up after 20,000 words or so.

My second attempt was a pre-apocalyptic fantasy novel called The Breaking. All the characters were named after Dickens characters. The protagonist was a minotaur named Jaggerth. It was just as bad as it sounds. I threw in the towel after maybe 10,000 words. After twice failing to even come close to succeeding at NaNoWriMo, I was done as a writer.

Almost 10 years after I made the transition from mall to school, I decided to get my doctorate. Although my main goal in getting a doctorate was to become a better educator, I was also excited that the coursework would get my writing life back on track. I would have to read. I would have to write. I would become a writer again.

And write I did. Just not well. The reason I’m writing this right now is because I’m teaching a section of the first class I ever took as a doctoral student. The first major assignment is a writing history narrative. I decided I would be a good teacher and model writing by sharing the narrative I wrote for the class way back in 2014. I opened up my Google Drive, found the document, and quickly skimmed through it. It was terrible. Boring, banal, and filled with typos. I decided to rewrite it.

If I were to look back through all the academic writing I did in my doctoral program, I don’t know if there’s any piece of writing that I’m truly proud of, that I wouldn’t want to immediately revise. I’m proud of the research I did, of the presentations I gave at conferences, and of the things I wrote for NCTE, but academic doctoral writing was a struggle for me. Everything took longer than I thought it would, and nothing came out the way I intended it to. I came into the program without any intention or real desire to follow the traditional tenure-track academic path, and my struggles with writing during my coursework confirmed to me that a publish-or-perish life in the academy was not for me.

And when I talk about my struggles with doctoral writing, I don’t just mean writer’s block or struggling to find a proper academic voice and tone. I’m talking about deep, existential struggles that kept me up at night. At one point, when I was struggling with the opening chapters of my dissertation, I got up super early one morning and drafted an email to my chair. In the email, I said I was quitting, that I couldn’t finish my dissertation, that I just wasn’t cut out to be a doctoral scholar. I was ready to give up on years of work. That’s the level of struggle I’m talking about.

After reflecting on the email, and debating whether or not to send it, I decided not to. Not because I suddenly found confidence as a writer, but because I knew it would disappoint everyone on my dissertation committee, and I couldn’t bring myself to do that. I respect them all too much to waste their time and support by quitting. So I deleted the email draft and carried on with my writing. Eventually, with the help of my committee (and after locking myself in a hotel room for a weekend), I was able to finish the revisions my dissertation needed. It was done. I was done. Now let us never speak of it again.

After finishing my dissertation, I had no real desire to write. And I had nothing to force me to try. Fortunately, tiny notebooks came to the rescue.

Part of my job involves classroom walkthroughs and teacher observations. I don’t want to use a laptop to take notes as it makes it look like I’m just sitting there answering emails. I tried to use an iPad, but I didn’t like the feel of “writing” with the Apple pencil. Enter the Field Notes notebook. Fits in my back pocket, doesn’t need to be charged, and I don’t need to sit at a desk to use it. I started doing all my notes for work by hand in a Field Notes journal. Not the exactly type of writing that we think of when we think of the word ‘writing.’ but taking notes by hand did help me value the act of writing again.

Another part of my job is providing professional development for teachers. For one session earlier this year, I made a short video on how to model writing. Inspired by a New York Times student writing contest, I decided to write a 100-word narrative. I took out one of my little notebooks, setup my phone to record, and wrote 100 words about the doctor appointment when I was diagnosed with Parkinson’s disease. A heavy topic for a virtual training, I suppose, but it’s what I needed to write about. And it felt good to write about it. I realized that it was going to be through writing that I would process my diagnosis and the changes it will bring to my life.

Since then, I’ve been writing. I participated in a writing marathon at NCTE in Columbus. I write in a five-year journal every morning and every night. I hand write meal plans and my agenda and my to-do list for the day. And, when the moment strikes me, I write more extensively. Sometimes in a tiny notebook, sometimes on the computer. A Letterboxd review of the Taylor Swift movie. A blog post about my travel anxieties. An ode to toast. I am writing again. Not every day, but often enough. And next month I’ll host a writing marathon for teachers in my district. It took me almost 20 years, but I’m back to where I was when I was working at the mall.

I am a writer.

It is Sunday, and my bracelet says that I am in the high stress zone. Why? Is it from watching football? From eating mediocre ziti leftovers? Or is it because this is the last weekend before I leave for vacation Saturday morning?

I enjoy traveling. I do not enjoy crowds, lines, or standing around waiting to get a table at a restaurant. I need a detailed plan for a trip to a city I’ve never been to (this doesn’t happen when I go to someplace I’m familiar/comfortable with, like Vegas or Seattle or Jekyll Island), and the process of planning brings out all my worst qualities: indecision, self-absorption, and an eager willingness to spend more money than I should. Here are just a few of the planning choices I had to make that filled me with the traveler’s dread.

When should I have a milkshake?

There is a soda shop near my hotel. They have real, old timey milkshakes. If I drink I giant chocolate shake, there is a chance it will upset my stomach, possibly even giving me a case of the poots. When do I want to risk the poots? On my first day there, before a hockey game? The last day, before my flight? Or should I just not drink a milkshake? I reorganized my itinerary (shoutout to the Wanderlog app) at least a half-dozen times trying to find the perfect slot for a frosty chocolate milkshake. I ended up going back to where I first had it. Probably wasted close to an hour on this. The milkshake had better be good.

Do I go to the zoo?

I like zoos. But it will be cold. But it will be cold everywhere, not just at the zoo. But I don’t want to bring my good camera. But my cell phone has a decent camera. But no zoom lens. (Can’t spell zoom without zoo.) But they have zoo lights at night. But the animals aren’t out at night, so I’d have to buy a ticket for a day visit, then wait an hour for zoo lights to begin. But there’s a Greek place nearby, so I could get a gyro while I wait. But there’s no convenient public transit nearby, so I’d have to spend close to $50 on Ubers. But I like zoos. It just goes on like this in my head. Currently, I am not planning on going to the zoo. But if the weather is nicer than expected…

What counts as an authentic Hard Rock Cafe experience?

I cannot visit a city that has a Hard Rock Cafe without going to the Hard Rock Cafe and coming home with a magnet and a shot glass. But the Hard Rock Cafe sucks. Do I want to spend one of my meals during my limited time in a new city on an overpriced, overcooked cheeseburger? Could I just stop at the gift shop after the hockey game and buy a magnet and shot glass without getting food? No. No, I cannot do that. I must eat the burger. I must be a true aficionado.

Do I have dinner at a fancy steakhouse?

This is a birthday trip and normally on my birthday trips I have dinner at a fancy steakhouse. The type of steakhouse where they don’t print the prices on the menu, but you know you’re spending at least $60 on a steak. I made a reservation and canceled it. Then I made another reservation. I was confident I was getting steak. I felt good about my choice. But when I went back to the website to make sure it was open on the holiday, I noticed it had a dress code. I don’t want to pack nice shoes. So I canceled the reservation and made one for the Jack Daniels themed restaurant at the same resort. Going to a whiskey themed restaurant even though I don’t drink? That’s the kind of stupid vacation choice I can make without regret.

#travel

How much did you spend on breakfast at McDonald’s this year? I spent $1328.79. Is that a lot? It seems like a lot. My usual order (bacon egg and cheese biscuit and a large Coke) runs about $6.25. So that means I ate breakfast at McDonald’s roughly 212 days this year. 58% of my days in 2023 started in a McDonald’s drive-thru. No wonder I’m depressed. But there is hope. I haven’t been to McDonald’s since December 21st. And how have I managed that feat of restraint? Toast.

Toast is good. Toast with butter and jelly. Toast with honey. Or my personal favorite, toast with peanut butter. Toast with peanut butter is saving me. Instead of scarfing down 700 empty calories of sugar and fat each morning, I’m now scarfing down two slices of Dave’s Killer Bread with one knifeful of Jif peanut butter split between the two slices. I also have a glass of fizzy water or juice and a couple spoonfuls of Greek yogurt. No cooking eggs or frying bacon or constantly wondering if the milk in the fridge is expired. There are only a couple of dishes to wash and it takes me about 10-15 minutes to prepare and scarf (less time than I would spend driving to McDonald’s.) I am not rushed. The toaster does all the work. I can relax and read RSS feeds while I scarf. It’s a great way to start the morning.

Now I know what you’re thinking. You’re thinking I’ve only managed to accomplish this week without McDonald’s because I’ve been on winter break. That once I go back to work, I will once again be scarfing biscuits and slurping soda in the TJ Maxx parking lot. Possibly, but I do not doubt the power of toast. Not only is toast delicious and part of a filling breakfast, toast is inspirational. Just this evening, I was going to prepare some beefy noodle slop in my Instant Pot. But I’ve been trying to do a digital detox and the other night I deleted 28 gigs of apps off my phone, including my recipe app. My recipes were not backed up in the cloud and I could not find it online. I started to make the recipe from memory, but soon realized I didn’t have several key ingredients. In the past, in my pre-toast days, I would have gone to the grocery store to get the ingredients. But I also would have told myself that by the time I get to the store and back, it will be too late to cook dinner so I probably should just stop and get something to eat tonight on the way. (I live in the suburbs, so on my way to the grocery store, I pass a Burger King, a Subway, a McDonald’s, a Sonic, a Chick-fil-A, a Panera, a Dairy Queen, and, if I go the back way coming home, a Panda Express.) That’s how I would go from having a nutritious dinner of homemade slop to having a dinner of fried rice with double orange chicken.

But that didn’t happen tonight. With the power of toast winding its way through my colon, I stood strong. I got some adobo seasoning powder from my spice rack, a can of not-yet-expired refried beans from the garage, and the giant bag of shredded Mexican cheese that all suburban households must keep in their fridge and I made tacos. Not great tacos, but filling and satisfying tacos. I did not submit to the siren song of fast food. At the age of 45, I am a stronger man than I have ever been, and it’s all because of toast.

#toast #wellness

Of all the Parkinson's symptoms (and there are plenty to choose from), the one that makes me most uncomfortable is I guess is called REM sleep behavior disorder (RBD). I’ve always called them night terrors. Whatever you call it, it’s when you physically act out your dreams while sleeping. So I was just dreaming about kicking an albatross, and I woke up physically kicking in bed. Now it's not that bad for me since I live alone and the cats have learned not to sleep by my feet, so I'm not in danger of harming anyone with my sleepy violence. But it always unnerves me. The tremors and stiffness of Parkinson's are if not constant then at least regular symptoms. This is only the second RBD occurrence I've had in the last couple month. Of course since I sleep alone, I only know about the vivid dreams that wake me up. Lord only knows what sort of archetypal creatures I'm kicking at in dreams where I don't wake up.

Like many aspects of Parkinson's, the impact these dreams have on me is difficult to explain. Whenever I have one, I can't get back to sleep. I stay awake for at least for a couple hours. At least today I'm trying to be productive and get some writing in.

I think it's the fact that I'm asleep when it happens that makes me so uncomfortable. While I can't control the tremors or stiffness, I'm at least aware of what's going on and can make attempts to compensate by doing things like switching to voice typing or being more deliberate with the way I walk. I can't make those adjustments when I'm asleep. Even my 25 pound weighted blanket isn't enough to hold down my body. I'm at the mercy of my broken brain and I feel completely helpless to do anything about it. And I'm pretty sure the cats don't like it, either.

#Parkinsons