The fragile nature of my life’s work

June 23, 2023

On June 16, 2023 a storm rolled through Mississippi. Violent straight-line winds and, possibly, a tornado caused several telephone poles in my subdivision to snap and fall, knocking out the power and blocking the only way in and out of the subdivision.

Unfortunately, whole swathes of Mississippi’s power grid failed, overwhelming repair crews and leaving many residents without air conditioning during a Mississippi summer.

I’m somewhat prepared for short power outages—those lasting less than a day. I charge my wheelchair every night. My patient lift—a thing I use to transfer to and from my wheelchair and bed—is usually charging when not in use. My MacBook Pro is usually charged and is a newer model with great battery life. My desktop Mac is attached to an uninterruptible power supply (UPS) so that I have time to save my work and shut down properly. My modem and router are also connected to that UPS. That keeps my internet connection powered for several hours.

But this was not a short outage. The June 16 outage lasted (for me) four grueling days until the evening of June 19. My internet connection held up long enough to communicate with my fellow remote coworkers to let them know what was going on. I submitted my end-of-pay-period timecard form just before my UPS died.

After my UPS died, taking with it my internet connection, I tried to switch to my phone’s personal hotspot. I couldn’t get it to work and wouldn’t discover until after the fact that the problem was that my particular wireless plan didn’t include the feature. ^[1]

I’m much more capable using a Mac than a mobile device. My hands aren’t strong enough to use a touch screen. So I try to maintain internet access on the Mac as long as I can. But after fighting with the hotspot and also learning that the outage was gonna be a bad one, I decided that I needed to shut down the MacBook Pro and use it as a power bank for our phones. I’m extremely limited on what I can accomplish on a phone, but I’m not totally helpless thanks to Apple’s Voice Control feature.

More on technology later.

The harsh realities of a power outage began to set in after about 12 hours—the house warmed to an uncomfortable temperature, food in the fridge was no longer being properly cooled, the house was dark.

Mississippi has hot, humid summers. We jumped back and forth on whether opening the windows helped or harmed us. I had to sleep without my BiPAP, which meant I had trouble breathing at night. That prevented my body from resting like it needed to.

As we rolled into Saturday morning it became apparent that repair crews were busy elsewhere. And there was another problem. Those downed telephone poles were blocking the only way in or out of our subdivision. Ours and our neighbors’ only way to get out of the subdivision was going offroad through an uneven patch of land belonging to a neighbor.

For all intents and purposes, we were stuck at home. Dealing with power outages is already difficult. Having a significant physical disability makes it even tougher. It was hard on me and my brother, but also on our mother and caregivers.

Overall we did okay. We were never really in physical danger. Had the power outage continued further, we would have had more significant problems—batteries in our durable medical equipment would have eventually died. At a certain point, we would have been forced to set up a generator or either figure out how to stay in a hotel (which is a tricky accessibility problem).

But that four days without power gave me time to think. There wasn’t much else I could do. As SMA has continually weakened my muscles, my interface with the world around me is increasingly computer-based.

I’m a web developer by trade. I make websites. Websites are just computer files. If the world was suddenly without power, websites would more or less cease to exist. The things that I have spent the majority of my adult life learning how to build would be nonexistent and meaningless. All the skills I’ve developed in programming and digital graphic design would become useless.

When the power is on, I’m worth a competitive web developer’s salary, despite only being able to move a few fingers. When the power is off, there is nothing productive I can offer the world on my own.

Many people have this problem. Not just me. What does it mean that the livelihoods of so many people rely on an intangible world of our creation?

But it goes beyond just working. All of my hobbies and interests are either computer-based inherently, or either I interface with them via a computer. I am a side project enthusiast and I run several websites and apps. Without power, I can’t work on those at all.

I’m also a writer. I write for this website, but I also write fiction as a hobby and have participated in National Novel Writing Month for many years. There was a time when I had enough strength in my hand to write with pen and paper. But that time has long since passed. I require a computer to be able to write. I’m writing this very article on two different computers—a Mac Studio on which I’m using an onscreen keyboard, and a MacBook Pro on which I’m using voice recognition software.

My life has become increasingly screen-based, but as a generally optimistic technologist, I’ve embraced it.^[2] But being without power for the better part of a week made me acutely aware of how detached from the physical world I have become.

During the power outage I started listening to We Are Legion (We Are Bob), the current read that my book club at work is on. Hilariously, it is about a man who has his mind uploaded into a self-replicating spacecraft. That is about as reliant on technology, and detached from the physical world, as it gets. So I still have a ways to go.

I guess what I’m saying is I need to get out more, as soon as I figure out what that means.