Tom is grateful
My interview with a man worth interviewing. Also, 7 other things worth knowing today.
Most days I’m helped out on Understandably by Tom Acquin, who helps me think through what to write, proofreads the newsletter, and generally helps keep me sane.
Tom has written in the past about his challenges as an adult living with cerebral palsy. Since we’ve had so many new subscribers, I thought we’d convert a recent interview I did with him into a Q&A. It’s largely about his experiences and his impressive sense of gratitude.
Even though it’s in this Q&A format, we basically wrote it together.
Tom is grateful
(Bill interviews Tom)
Hello Tom. We’re awkwardly starting this reconstructed conversation in media res. Can you explain your medical challenges, especially for new readers?
I have cerebral palsy, which basically is a fancy word for brain damage, usually suffered at birth. I had an umbilical cord wrapped around my neck, depriving me of oxygen.
As a result, I’ve mostly depended on a wheelchair for mobility, and exclusively since I was in college.
Oddly, I've had multiple brain scans and they can't actually find the brain damage. At least, as of the last time they tried in the 1990s. So, apparently I must be really good at faking it. I'm just a super method actor, I guess. I'm committed to the part.
A while back, you wrote about how you were relearning to walk.
When I was 18, I was at my peak, and I could walk about a quarter of a mile using a walker without getting winded. Recently, I realized this is about as good as it's going to get for me, physically. So, I set a goal of walking 10,000 steps per day.
So far, I've got it up to about 1,900 steps on average. My record is 2,586, in 200-step intervals. But I also realized that the "10,000-step" goal is really a marketing pitch, not so much based on health.
In the 1960s a Japanese clockmaker invented a pedometer, and the list name of the device was the "10,000-steps meter." It's a big, memorable and achievable number, and it’s also where I think this all started.
So, what's it like to have mobility issues but also to live in a fairly rural area?
I'm in rural Maine. I mainly leave my house for medical appointments, since COVID. I have friends, and we used to do stuff like go to lunch, but when COVID hit, everyone at least that I hang out with just stayed in our houses and we're still sort of in that mode.
But, I have an outdoor deck, and I can be outside my house.
I used to travel and fly a lot more. One of the things I liked is how they put me in first class whenever they could, because they just didn’t want to have to carry me to the back of the plane.
One of the words I’ve used to describe you is ‘grateful.’ And, not just in spite of your disability but even because of it.
I am grateful for my disability, which I know might shock some people. For one thing, I never had to shovel snow. I like that.
I never had to worry about bullies. If you're gonna make fun of a kid in a wheelchair, it's not gonna get you very far.
I also just got a lot of extra attention. For instance, I had a big brother, sort of a “Big Brothers/Big Sisters” thing. He was at Bowdoin College, and my first college party was when I was 12 years old. I got to hang out with some really beautiful women.
Nothing nefarious happened or anything, but I was 12. It was just really fun.
[Bill note: while Tom and I wrote this together, we tracked down and found his ex-Big Brother. Maybe they’ll have a reunion and we can write about it again. Or maybe not, we’ll see!]
I mean, I just had a really idyllic childhood. I went to Pine Tree camp, which is a camp for disabled people, and I met my best friend there. Of course, it’s a camp for disabled people, so all these years later, not everyone has survived.
I probably had 10 good friends from there, but we were all medically needy, so to speak. Life’s hard, until it’s not.
And I think I've told you this: I just enjoy the fact that I get to do a lot of sitting and thinking, which a lot of other people don't get to do. They just don't have that luxury.
I’m sorry: ‘Life’s hard, until it’s not?’
I think I’m more comfortable with mortality than most people. I’m not a fatalist or anything, but I know that I’m going to die someday and I’ve just accepted it.
I’ve experienced losing people, including friends, long before now. In my 20s, I think I had five people die in the space of a few months. They weren’t older relatives or grandparents; they were my friends.
It was a really difficult time.
But, because I’ve experienced this, it’s not as hard to deal with now. For example, I don’t think COVID was as stressful for me as for some people as a result—although: living in a science fiction dystopia, not really a life highlight.
So what does the future look like?
The problem I find with CP is that once you turn 18, they’re just like, ‘Well, we've done as much as we can for you. Good luck for the rest of your life!’
You know what I mean? And it's like, I still have CP! And it causes different things as you get older.
‘Yeah, we don't really study that. So good luck figuring that out.’
But I just saw a guy in the last month or so and he turned 79. That was pretty cool. And there’s one other person that I've seen who was like over 100.
The thing about that is that if they're 79 or 100 now, that means they grew up when people really didn't know anything about CP. They had no treatments. From the beginning, those people were really pioneers.
I might write soon about student loans and reports that the Biden administration might forgive some of them. In advance of hat, if you’re on Twitter especially, and you’d like to participate in a short, one-question poll, please feel free to chime in at this link.
7 other things worth knowing today
Here's the first mention in Understandably of the Johnny Depp/Amber Heard defamation trial. The jury in this trial, which has been covered extensively by everyone else on the planet, reached a verdict, awarding Depp a total of $15 million from Heard, and awarding Heard a total of $2 million from Depp. (NBC News)
Think you’re too old to become a digital nomad? Think again, at least according to this columnist. (Fodors)
Tesla CEO Elon Musk sent an email late Tuesday to his entire company, announcing the end of remote work: “Everyone at Tesla is required to spend a minimum of 40 hours in the office per week,” Musk wrote. “Moreover, the office must be where your actual colleagues are located, not some remote pseudo office. If you don’t show up, we will assume you have resigned.” (Bloomberg)
No more big vanity projects: How Netflix says it's going to deal with losing a massive number of subscribers and market value. (Hollywood Reporter)
Sheryl Sandberg, COO of Facebook parent Meta for the last 14 years, is stepping down. (CNBC)
Yes, I am one of those insufferable people who asks if you've seen The Wire, and if not, tells you to watch it. The show just turned 20. Here's a good, lengthy interview with its creators. (NYT)
When she was just 7 years old, a girl named Leah Menzies lost her mother to liver failure. Menzies is now 18, and she wondered what her mother would have thought of her boyfriend, Thomas McLeod. Why we’re sharing this: The teenagers happened to look at McLeod's kindergarten class picture, where they realized that Menzie's mother, Yan Menzies, had been McLeod’s teacher. (WashPost)
Thanks for reading. Photo: Pixabay. Want to see all my mistakes? Click here.