Gadgets

As Stephanie encountered health issues, day-to-day life became more difficult. That's the story of the last six or seven years of her life — but that's a terribly sad story, and not the story I'm telling today. No, today it's a happier story, about gadgets that proved helpful with some of Stephanie's problems.

One of her first problems with day-to-day living came when it strangely became difficult and painful for Stephanie to walk. Her legs were mysteriously weakened, and she saw doctors who scratched their heads, unsure about what was causing this and what to do about it.

Meanwhile, though, Stephanie had to deal with walking unsteadily, so we bought her a cane (the first of several). She also struggled with such mundane but suddenly scary tasks as sitting down on the toilet, and getting back up again. Lifting herself off the toilet was so difficult that our short-term solution was for Steph to call my name, and I would come into the bathroom, take her hand, and pull her from sitting to standing. Which worked fine when I was at home; it was quick, easy, and painless — but Steph was stranded if she needed to use the toilet while I was at work or out running errands. 

So we bought our first helpful gadget, a set of toilet rails, for $25 or so. They were easy to install, and they were sturdy enough to trust them with Steph's weight. When she was done on the toilet, she could push herself up with the side-rails. It was a great relief that she could lift herself off the toilet, but it was still difficult.

So we bought this riser seat, for $20 or so. It's plastic but sturdy, and it nestles securely inside a standard toilet seat, so the seated position is five inches higher than it was. Five inches made all the difference, and with the rails attached as well, going to the bathroom was no longer a difficulty.

Showers became dangerous when Steph was having trouble standing, so I immediately bought anti-slip pads, and glued them to the shower floor. Still, though, standing in the shower was precarious. She was embarrassed to ask me to be her "spotter" while she showered, but it was necessary, so I stood outside the shower and held her arm, keeping her stable and myself close enough to grab her if she started to wobble. This method was successful but it was a mess, both logistically and in soaking the entire bathroom, so we only did it twice.

By then I'd ordered a shower chair, like this one. It was expensive — $150 or so — but it was well worth it. Steph could sit outside the shower, then slide the seat and herself into the shower, where she could safely and easily close the curtain and reach for the shower nozzle, and shower all by herself. "Like a human adult," she said happily.

As I've said elsewhere, we lived in an apartment that wasn't wheelchair-accessible, with a few steps separating the front door from the sidewalk. Those steps were difficult when Steph had trouble walking, and we mastered a routine where I went up the stairs first and pulled her up after me, by the arms.

Once Steph was in a wheelchair, though, we needed a ramp, and we bought one similar to this picture. It's solid metal, longer and heavier than it looks, with a nice convenient handle that fell off after a few months, and couldn't be repaired. But the ramp worked well; I would carry it to the stairs, unfold it from briefcase-shaped to a ramp, which could take Steph up or down. Amazon sells ramps like this for about $120, though we bought ours used for a lot less.

One of our smartest gadgets was also the cheapest. Getting up to get a drink of water was a hassle for Steph; she had to either wake me up to get some water for her, or else she had to scoot herself from the bed into the wheelchair, then roll down the hall and into the kitchen for the water, and then roll herself back down the hall and scoot herself off the wheelchair and back into bed. I would never have complained about being awakened to fetch her some water, but Steph didn't like waking me up, so getting a drink of water in the middle of the night meant five minutes of serious effort, and of course she'd be wide awake by the time she'd quenched her thirst.

The solution? We bought a water-spigot, similar to what's pictured here. It was easily refillable, and we kept a full one in the fridge, so the water by her bedside was nice and cold every night, for at least a few hours. It was like having an instant sink. Stephanie could roll over, get a glass of water, and go right back to sleep.

When she was bedridden, sometimes for weeks or months at a time, I would make Steph's lunch before going to work — hot soup in a Thermos, cold milk in another Thermos, and she liked to chew ice, so I'd leave her a third Thermos full of ice cubes. For a while, we kept a toaster and a loaf of bread on her nightstand. In the winter, when Wisconsin gets cold, we bought a space heater with a remote control, so Steph could warm up the room as needed, without having to scoot in and out of her wheelchair. I wanted to get her a Clapper, so she could clap-on and clap-off the lights, but she thought Clappers were too kitschy and classless, so alas, we never bought one of those. But her bedside lamp was on an extension cord with a switch, under the blankets.

We always tried to find gadgets that could help, and we were generally successful. If there's a moral to this story, it's only this: If you're going to be disabled, it's preferable to be disabled in a well-off first-world country like America, where gadgets can help for a reasonable price. And it's obvious but it needs to be said, that I wish she was here, to wake me up for a glass of water in the middle of the night.

Ugly Fish


We never slept in our apartment's first bedroom, between the living room and the master bedroom. Instead, for the first five or seven years that we lived in this building, that room housed our two desks and two desktop computers — hence we always called it our "office."

Steph was healthy when we both used our office almost every night. We'd sit at our desks, back to back, surfing the net or listening to music or podcasts — sometimes different soundtracks with headphones or earbuds on, or sometimes sharing the same soundtrack over the speakers attached to her 'pooter or mine.

Sometimes we'd watch movies together, streaming or via DVD on one of our computers, sitting side-by-side in our chairs-on-wheels, years before Steph was in a wheelchair. Other times we watched stuff separately, but still interrupted each other to talk about what we were watching, what we were listening to, what we were working on, or what we were thinking about.

Those were such wonderful evenings together, yet it probably never seriously occurred to us while we shared so many hours in that room, that those were some of our "good old days."

When Stephanie's desktop computer fizzled and sparked and stopped working, we simply replaced it with a laptop, since she'd saved most of her important files on disc. We never had her desktop computer fixed, so it's still in our office. Our computers are always cheap and second-hand anyway, so it's generally more cost-effective to replace than to repair.

Once we'd both switched from desktop computers to the more portable laptops, the office became a room we rarely entered. For a few years it was our clutter space, where stuff we didn't much use went to die. And then, when Stephanie went on home dialysis, I half-cleared out that room and it became the storage area for the 1,000 pounds of supplies that dialysis required every month.

Never weighed the stuff, but 1,000 pounds is probably an under-estimate. Every month, at a pre-arranged time and date, an 18-wheeler pulled up in front of our apartment, and a husky, muscular man made a dozen trips wheeling fully-loaded hand-trucks from the truck, down the sidewalk, up the stairs, down the hallway, into our apartment, and into the office.

Thoughtfully, the kidney conglomerate — Baxter is the company's name — didn't have their name emblazoned on the truck. Instead, to avoid embarrassment, the truck was painted in some fictitious company's colors and logo. I think it was "Jet Blue," or something like that.

After Stephanie died, Baxter was kind enough to send the same Jet Blue truck and driver to take away the supplies we'd had on hand — fifty or sixty boxes of kidney-cleansing liquid, with two six-gallon bags in each box; several boxes with filtering cassettes and twenty feet of tubing in each box; a few small boxes of caps and connectors.

From these boxes which always half-filled the office, Steph and I had always assembled the needed plastics and fluids for her nightly prescription, which she hated so much. "I'm stuck in this wheelchair all day, and tethered to the bed by all these tubes every night," she sometimes complained.

And yet, 95% of the time, she remained upbeat about it all, which always struck me as mighty dang optimistic. Certainly more optimistic that I'd be, if I had to endure dialysis every night. How about you? Do you think you could keep your spirits up in the face of that thoroughly unpleasant routine, overnight every night? Doubtful.

Under Stephanie's desk in the office, there was a huge and heavy box of tubing and cassettes that the Baxter guy had missed when he was carting away her supplies. The Shrine already holds an empty box of Baxter fluids and a half-empty box of Baxter connector valves, because I believe we should honor the worst of times (dialysis) along with the best of times (everything else). So we're not keeping this 40-pound box of medical plastics.

Once delivered to our home, none of these supplies could be used by anyone but Stephanie — that's the law, which makes sense. And all this plastic (six thick empty bags every morning, and what seemed like a quarter-mile of tubing) wasn't recyclable, so it all went straight into the dumpster, day after day. The last of it is going into the dumpster this afternoon.

With Stephanie and most of the kidney supplies gone, over the past year the office has again become clutter central. I've been and remain unwilling to sleep in our bedroom without Stephanie, so I've been living in the living room. Soon, though, I'm planning to relocate into the office, and start living and sleeping there.

There are two cheap particle-board desks in our office, one for each of us. Steph assembled hers first, in San Francisco, and it moved with us to Kansas City and then to Madison. As with most things Stephanie did, she did it well her desk is still stable and sturdy, and it's the desk that will stay in the room. The desk on the other side of the room is much newer, but it was assembled by me, so it's wobbly, falling apart, and destined for the dumpster.

Today is all about working my way through the clutter in our office. Boxes of old books and old clothes destined for Goodwill. Lots of other old odds and ends, most of which should've gone to to the recycling bin years ago.

And there's something immensely and enormously sad about looking through old paperwork — Steph's disability claim, our taxes from ten eleven and twelve years ago, proof of insurance for the car we owned before our current car, the lease for our apartment in Kansas City, and so much more — and realizing it's of no use to anyone. Most of it is just going into the trash.

And here's Steph's old, busted computer. She once told me where to find her passwords, bank info, credit card details, and all her other most personal information, if I ever needed any of it. "It’s all in a folder on my desktop, labeled 'Poems I wrote when I was sad.' I figure if some bad guy or hacker ever accesses my computer, that's the file they'd have absolutely no interest in opening." She was a smart woman.

More than ten years after she last sat at her desk, I've trashed her last non-portable computer, disconnected the screen and keyboard, stashed the usable parts in our electronics box, and the remains are in the garbage. Of course, everything is sad any time I stop to think, but there's an extra sadness to unplugging Steph's computer for the last time.

There was a thumb drive plugged into her dusty old CPU. The CPU itself, we knew, was fried, but I wondered whether the thumb drive might work, whether it might have something interesting on it — something from Stephanie. Plugged it into my laptop, and yup, it's fully functional and full of files from the late 2000s and very early 2010s.

In a folder titled "Cheese," here are all of Stephanie's notes for the practice podcasts that we were doing, September to December 2010. There are no audio files, as we weren't recording those sessions, but her notes vividly bring back the 'episodes' we did.

Another folder is titled "Games" — all about the video games she was playing, Angband, Klepto, Legacy, and half a dozen more, with links, downloaded stuff, cheat codes, and whatever else made the games fun for her. Here's an entire spreadsheet listing characters and trinkets I'm pretty sure are related to Sims, a game she liked and played quite a lot, until she decided that its publisher, Electronic Arts, is a company so vile that it had sucked all the fun out of its own games. Browsing through Steph's Games folder is all foreign to me, since I've never enjoyed video games, but it's something that made Steph happy, so it's important and absolutely worth keeping.

A folder labeled "Camping" — here's Stephanie's checklist of things to pack for one of our weekend camping trips. It's a word-processing document, and I remember having a paper copy of the same page in front of us as we packed, several times, for our camping trips.

"Jobs" — Here's a collection of info on jobs she was looking into, after she was laid off at the bank, but before she was hired by the State of Wisconsin. This is a list I'd never seen before, but it's as well-organized as I would've expected. Stephanie was always methodical about difficult tasks. Me, when I'm job-hunting, it's an index card with a few phone numbers, but Steph kept detailed job descriptions and rigorous records of who'd been called or had a résumé mailed to them.

Under "Future Crafties!", here's a list of several knitting and crochet projects she wanted to undertake. Top of the list is "two-color hat with ear-flaps," which Steph finished and gave to me a few months later.

Under "Recipes to Try," there are about a dozen recipes, and most of them I don't remember but don't doubt that Steph prepared them and they were terrific. One of them I do remember, is the "ugly fish." We both liked it a lot, and it had the added attraction of being easy to make. It was so easy that Steph would eat it even if I cooked it. Understand, I didn't cook much in our marriage, because Steph usually found my kitchen efforts inedible, but she would always eat the ugly fish, whether she'd made it or I had.

And sure enough, on the thumb drive here's a folder labeled, 'Poems I wrote when I was sad.', with all the accounts and passwords she was using ten years ago. Gaming stuff, the electric bills, her library card number and login, and more and more. Somehow I'd forgotten that her usual password for all these accounts was an intentionally-misspelled version of my name. And here's her parents' address, and me, as her emergency contact thanks, love, I'm honored.

Whenever I'm looking through Stephanie's old papers or, in this case, an old disc drive, I'm always hoping to find a letter she'd written to me. And here's a folder titled, "Doug," but alas, it's empty. Whatever she wrote to me there, she either gave it to me or deleted it years ago.

Still, it was a marvelous morning and afternoon, sitting here clicking through a list of the things that mattered to my wife, nine years ago. My eyes are wet, my heart is full, and I'm headed to the grocery store because I want ugly fish for dinner.

Ugly Fish
2 tablespoons lemon juice
¼ cup mayonnaise
¼ cup green-can cheese (aka, powdered Parmesan)
‎⅓ cup crushed Saltine crackers
½ stick of butter
1 pound of cheap fish

Mix the first five ingredients and spread over the thawed or fresh fish. Cook twenty minutes in a pre-heated 350° oven.