Mobility

My partner is a high school art teacher. She’s very good at her job, having earned the state-wide Art Teacher of the Year award in Maryland. Unfortunately, she has a mobility disability — she can still walk, but only just, and the current plan is to switch her to a wheelchair starting this summer.

Yesterday, after getting ready for school and heading out the front door, she had a sudden panic attack. It was only a few minutes before school was to start, but she felt completely unable to even get to the car in that moment. After trying repeatedly for ~five minutes (an eternity when you keep trying and failing to move the way you want to), she called in to work. This is the first time such a panic attack has come along so suddenly. Sure, she’s missed work before because of mobility issues, but it was always because it was raining heavily and she was afraid of slipping, or she ran out of energy on the previous day and so knew in advance she wouldn’t be able to teach and so scheduled a substitute teacher. This was the first time she had to call out merely a few minutes before class was scheduled to start. This scared both of us immensely.

We had thought to get the wheelchair during the summer because it comes along with so many other tasks: installing a ramp in front of the house (and getting permission from the HOA ahead of time), installing some kind of device on the van so that she can drive by herself even while using a wheelchair, and modifying the house a bit to accommodate it as well. This process may well take weeks or even a couple of months, so we didn’t want it to interfere with the constant school schedule from here to the end of the school year. But now, with the problem she had yesterday morning, we were afraid that maybe getting a wheelchair was instead an emergency that she had to do immediately, and maybe she’d even have to take off the from her school children in order to do it.

So we were both surprised and amazed today when getting to school this morning ended up easier than it has been in literally months. The process of getting to the car, which usually took ~10 minutes total with her disability, only took ~two minutes today. The look of her face when she realized how much easier things were made my heart leap for joy — she was so very happy to realize she could do it so quickly. And all it took was a small device that helped her to be steady as she got to the car.

Every day, small things happen to people all over the world; some are good, some are bad. This small story from our household isn’t that momentous. We still have to switch to a wheelchair in the summer. She still has mobility issues. But the fear we felt yesterday morning when she was completely unable to get to the car compared to the joy we felt when using a mobility device made things extraordinarily easier this morning is something that I think is worth remarking upon.

It’s a good day today.

Denise Saladyga

Today is the funeral of Denise Saladyga. It is also what would have been her 71st birthday. Her loss is felt by many today, but I wanted to take a moment to share that particular slice of her life that intersected with my own. Others will be sharing stories of how completely and utterly stoked she was to be a grandparent; of how her personal experience with breast cancer became a driving need for her to become an advocate for fellow breast cancer diagnosis recipients, especially in the educator community; of her infectious love of drama she shared with her students; of how she worked tirelessly to educate some of the least privileged students with severe learning disabilities and help them to become true participating members of our shared society; and of how she was a true and close friend of my partner, Katherine Hess, being there for her many times in her hours of need.

I didn't know Denise in most of these capacities, except in stories. I first met Denise through my partner, who introduced her as a friend. The stories they would share when they got together were wonderful to experience second-hand. Some of them were great positive stories about students and what they went through to turn those lives around. Denise also had a few horror stories about particular administrators and staff in Montgomery County Public Schools, some of whom apparently didn't act very appropriately with Denise at particular points in her career. However, the most memorable moments for me, having only met her in the last decade of her life, are the games we would play.

Each year, I would drive from Maryland to Florida for Dice Tower Con (now Dice Tower East), a board game convention where lots of games are played over the course of a week. On our way back, we would often stop at Denise and Joe's place in Myrtle Beach, South Carolina. They had a wonderful place. I would sleep in the spare bedroom and partake of their amazing and generous breakfast. And, each night, we would play board games.

Katherine also owns the special edition Azul Giant.

Joe wasn't as much of a fan, but Denise just adored Azul. It's a board game about laying down tiles of various patterns. She loved the beauty, but also how the puzzle of the game ramped up in difficulty as each round of the game progressed. Denise, Katherine, and I played repeated games of Azul each time we visited, and Denise loved it.

What I remember most about these experiences is the conversation. Katherine and I would talk about the convention we'd just left in Florida, describing the games and the people we'd interacted with. We'd often have to pause mid-sentence because the turns would get so complex. Then, on my turn, I'd get to hear about so-and-so student that both Katherine and Denise had mentored, and I'd inevitably make a mistake that would cost me the game.

The boards would be set up on a circular crocheted piece by Denise. Unlike other games that use a rectangular board, Azul is played with a series of smaller circular boards that surround an empty space in the middle. This made it perfect for the crocheted cover on the table, and the game pieces beautifully adorned the space made by the various colors. At home, we have a rather large blanket crocheted by Denise, lovingly made in identical colors to a painting that Katherine made. It's a wonderful addition to our house, and it makes for something nice (& beautiful!) to cover up in on sadder days. The fact that the blanket matches the colors of Katherine's painting is an amazing bonus. Denise really took a lot of time to think about the things she crocheted for her friends, and it really shows.

The four of us playing Azul.

I last met with Denise and Joe at The Cheesecake Factory last year. It was one of the first times I interacted with someone without my mask post-COVID other than my partners. It was wonderful to get caught up after the COVID years, which really derailed our plans of being able to see them in Myrtle Beach for a while there. The food was especially good that day. We shared an appetizer and talked of all kinds of things. I was inundated with photos that day — Denise was so very, very proud of being a grandparent. We ordered dessert, said our goodbyes, and after too short a time we found ourselves walking back to our respective cars. I never got a chance to speak with her again.

I know that Denise did a lot in this world. She was very well known for her cancer activism in the educator community, standing up for her fellow teachers when they needed it most. Among students she was loved dearly for her dedication to teaching the dramatic arts. She was quite close to her family and undoubtedly has many stories there that should be told. But that small slice of her life that she shared with me was mostly just about board games. I wasn't Denise's closest friend. I certainly wasn't as close as Katherine is. But I really and truly appreciated Denise all the same. She was a tough opponent and won more than her share of the games I played with her.

I'll miss you.

My beloved friend Denise passed away a few weeks ago from her third battle with cancer. Today she would have turned 71,...

Posted by Katherine Hess on Thursday, March 9, 2023

A Ten Year Anniversary

I met Katherine ten years ago, on January 13, 2013.

We met online. Before she'd sent her first message to me, she'd already learned quite a bit about me. Back then, OKCupid was not as worthless as it is now. I'd first joined back when it was called TheSpark — it was common to go online there and take personality tests (I think I first found it when I searched for a way to take the Myers-Briggs Type Indicator test online (yes, I realize it's a junk test today, but remember this was the same year google was created and I was just a kid)) — and by this time I had answered thousands of questions on my OKC profile, allowing anyone looking me up there to get to know all kinds of things about me prior to ever having to talk to me. Honestly, I miss that kind of interaction today. All too often when I meet someone new I don't have nearly as much information about them as I did back in the early '10s.

From Randall Munroe's xkcd 2521.

That opening message was about the status games we all inevitably play, and how my veg*nism plays into that. We spoke of McClane's shoelessness in Die Hard; of using syringes to inject toothpaste back into a tube; and of the moniker "bolt" having two contradictory meanings: being loyal in the sense of being bolted to one's closest friends and being skittish in the sense of potentially bolting from them. Katherine felt that both senses of the word applied to her.

Within a few back and forth messages, we had already graduated to sharing made-up-on-the-spot fiction about toothpaste tube refilling and I was seriously impressed by her quick wit and creative mind. She made me laugh from the very start, and perhaps that is what made me fall for her so quickly. A few days later we had a very long phone conversation, and soon we were seeing each other regularly. It was perhaps the most important turning point in my life.

Personally, I prefer prime anniversaries to those considered significant merely because of base ten. But Katherine's preference is for increments of five, so this is the second such anniversary we'll have and I'm especially looking forward to it on that basis. Katherine means the world to me, and I'm so happy to be able to celebrate this anniversary with her. <3

Disability

I live with a disabled partner. Sometimes, it's just…hard. Things that other people take for granted don't always apply in our family. Simple tasks sometimes take extra time. Moderate tasks can be difficult to perform regularly. Hard tasks can be impossible.

Thankfully, I am an able-bodied person, and so I can pick up a lot of the slack when it comes to chores or dealing with heavy or far-away things. But this cuts to the core of my personal struggle: where exactly do I draw the line between offering my help and allowing my partner the opportunities to be self-reliant? It seems like the appropriate threshold is different from day to day, mostly based on how many spoons my partner has available. Yet knowing where this threshold lies on a given day is opaque to me unless my partner explicitly shares where the line is.

I am thankful that we are fortunate enough to have sufficient help beyond just us. Recently, we installed a stair lift to make it much more easy to travel between floors in our home, and this has greatly increased our quality of life. Almost as important are the emergency services officials in our community; twice this month they have been extremely helpful when we have needed it most. But at the same time, I find myself worrying; needing outside help two times in a month is two times too many. I feel as though I need to find additional solutions — like the amazingly helpful stairlift — that will help to ensure that we can get by even on bad days.

Currently, my partner uses canes to get around in the house. I think that will likely continue. But when it comes to being outside the home, I believe that we may need to switch to a wheelchair. I know this will only be positive for us. It will allow a level of mobility that has been lacking as of late. Yet at the same time I find that it brings somewhat unpleasant emotions. Without good reason, I sometimes emotionally feel as though I am somehow failing my partner, merely because we are needing to turn to additional expensive devices. I'm enormously grateful that we can afford these things, but it's not the price that is seemingly getting to me. It's more the unjustified feeling that, somehow, if I were a better partner, I'd have been able to make things better without resorting to these devices.

Things are just really hard in my personal life at the moment. I am doing my best, but it scares me that perhaps my best is not good enough.

Motivated Reasoning

I do not feel well at all.

I first encountered effective altruism in 2011. Since then, I've personally given nearly $100k (in both direct and in-kind donations) to what I've considered effective causes, and I've raised tens of millions of dollars via the orgs I've worked with. I did all of this because I strongly believe it to be the right thing to do. I've dedicated an entire decade of my life to EA organizations. I moderate the r/effectivealtruism subreddit; I organize the EA wikiproject on Wikipedia; I've served on two boards of EA orgs; I've worked at several EA orgs and volunteered at several more. Quite frankly, the field of Effective Altruism has been my life for as long as I've taken charity seriously. It is perhaps what has defined me the most for a very long time.

But the betrayal of SBF makes me feel sick to my stomach. The mere possibility that there may have been some in the movement who knew SBF was crossing a line haunts me. Before, I suppose I had an unreasonable blind trust that others in EA would cooperate in the prisoner's dilemma, that superrationality would hold sway, that I could trust my fellow EAs to be honest. And maybe I still can trust these things. As far as I know, the fraud stops at SBF and those running FTX. But even if I'm 95% sure of this, the 5% chance that others are like him makes me feel ill.

I wasn't friends with him. We merely served on the same board of directors. Maybe it is unreasonable to think this, but I cannot help but to feel like I should have known. With knowledge of how things eventually ended up, maybe the things I experienced should have clued me in, but they seemed reasonable at the time.

But today I caught myself practicing motivated reasoning. A person I think highly of mentioned that purchasing Wytham Abbey is not consistent with doing effective altruism. Usually I just ignore these comments and move on, but for some reason I decided to try to explain why it might have been thought to have positive expected value. Keep in mind that I do not even know for sure that it is _true_ that CEA bought the place. I just started generating possible reasons unnecessarily. It was only a few minutes later that I realized that this is motivated reasoning. Even if my arguments were true, I had not thought of them at all until this situation had come up, and I gave them as responses to defend something when I don't even know if it is a good thing or not. What am I even doing by tweeting in this way?

There is a difference between being clever and being wise. Maybe it is clever to be able to come up with reasons for things. But it is not wise, for if you can equally come up with reasons for two sides of a dilemma then you do not have reason to choose either side. If you can just explain things, regardless of how things end up, then you don't have true understanding. Instead, you must be able to register your own confusion in order to tell the difference between fiction and reality.

What should have happened today is that I should have registered confusion. I should not have rushed to come up with explanations for things that I do not even know. I should have been modest. I should have not have commented.

It's true that I am clever. But I am so very far away from being wise. I feel sick by what has happened; I feel hurt and deceived and taken advantage of. The org I founded has experienced a huge loss from this entire FTX debacle and I am seriously wondering how I can in good faith continue forward with raising money for causes where I am no longer quite as confident in all of the people running them.

I still believe in the arguments underlying EA. I have for years, and they still ring true. But I am much less confident that my fellow EAs would cooperate in the prisoner's dilemma. I find myself looking with just a smidge more suspicion that the posts written on the EA Forum may not be completely honest. Really, the truth is that each time I look at EA content on Twitter or anywhere else these days, I find myself feeling not entirely well. 

Perhaps I just need to step back for a bit. (But how can I even do that when I need to continue raising money with the org I run?)