When we talked about the things we wanted from life, Stephanie didn’t have a lot to say. More than once, she told me that she had always dreamed about meeting a man who accepted her as she was, who’d be supportive and content to be with her, and that her dream came true the day she met me. That’s as sweet as a buttery blueberry muffin, and I was proud to be her dream spouse. The feeling was, of course, reciprocated.
Beyond such romantic talk, though, she didn’t (to my knowledge) have any particularly poetic or exotic aspirations. She liked watching cooking competitions on TV, like Top Chef and Guy Fieri’s Grocery Games, and she always knew what she’d prepare to win any of those shows, but she never mentioned actually applying to be a contestant. She never told me she wanted to run for Congress, or be the first woman on the moon, or anything like that. She had ordinary daydreams about getting a promotion at work, or buying a motorcycle, or living in an RV on the road. Other than her sweet talk about me, though, none of her dreams ever came true.
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She didn’t do much writing after our zine days, but when Isthmus, one of Madison’s local weeklies, announced that they were accepting applications for a new advice columnist, Steph applied for the job with a trial column that was flat-out hilarious while also being wise and insightful. I’m hoping to find that column somewhere in a box or an envelope, and if/when I do I’ll add it to this page. Meanwhile, trust me – it was excellent. But she didn’t get the gig.
Occasionally I read the weekly advice column in Isthmus, written by the person they selected instead. It’s not 2/3 as good as Stephanie’s material.
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She wanted to see Europe, to visit the museums and the ancient buildings and ruins, dine at the restaurants, listen to the language. She wanted to go on a Caribbean cruise, see the ocean views, explore the ports-of-call. She wanted to return to Russia, seeing again the fabulous mosques and ornate subway stations, eating pirozhki and maybe mastering making it. She wanted to see Washington DC, and China, and the Amazon. She dreamed of traveling, but we couldn’t afford any of those trips.
She had been to Memphis once, before we met, and she wanted to go again, to show me Tennessee. A driving trip to Memphis was vaguely on our agenda, and probably would’ve been our big vacation for 2020 or 2021, but now it’ll never happen.
We moved a few times over the years, first to San Francisco, then to Kansas City, then Madison, so we sorta saw the country that way. But once we were settled in Wisconsin our only travels were day trips – puttering around in some adjacent and nearby counties, just looking at the scenery or having lunch at a park, and then driving back home. We had occasional overnight trips – brief stays at her parents’ house in Racine, or at a hotel in Milwaukee (100 miles from home), a few drives to a casino in Dubuque (100 miles the other direction), one trip to Chicago (150 miles), and our longest vacation, a two-day excursion to the Mississippi River and north almost to Minneapolis and back (350 miles).
When she went on dialysis, though, our leash got a lot shorter. The nephrology team will tell you that kidney patients can travel, and that’s true, at least literally. Anyone who can sit in a car or a plane can travel. Practically speaking, though, travel is difficult if you’re on dialysis.
On hemodialysis (where patients visit a clinic three times a week and spend several hours hooked to a machine), you can’t travel unless you book your clinics in advance like you’d book hotels, and you can’t even do that unless your insurance will cover roaming dialysis; our insurance wouldn’t. Without insurance, a single session of hemo costs about $500, so unless you’re rich or have gold-plated insurance, travel on hemodialysis is not really an option.
On peritoneal dialysis (PD, done at home seven nights a week), you’re somewhat more portable, because you can bring the machine and the supplies with you. But the machine weighs thirty pounds or so, and the supplies weigh another thirty pounds – per night – which rules out going anyplace on a plane, and quite quickly fills the trunk of a car.
While Steph was on PD, we never did anything longer than one night in a hotel, before returning home. She wasn’t enthusiastic about such trips, because she was embarrassed to know the front desk at the hotel was watching me lug the machine and the supplies in, and anyway, she said, “It’s really not a vacation if I’m hooking up to dialysis. That’s what I need a vacation from.”
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When we first knew that we were in love and we’d be spending our lives together, we spoke briefly of running a pirate radio station out of our home. That never happened – the technology was beyond us, plus we had perhaps too much common sense to invite the Federal Communications Commission to be our enemy.
But later, when podcasts were invented, that seemed like a workable succession to our radio dream. So we planned a podcast, a weekly hour of news and commentary with a sense of humor and a leftist perspective. Since we lived in Wisconsin, it was going to be called The Cheese Report. We bought some of the necessary equipment, and we prepared notes and talking points, as if we were doing a show. For several weeks we did “rehearsal” episodes, and it was a lot of fun. In front of a microphone Steph became “Abby,” and she was every bit as funny and quick-witted as I’d expected. I wasn’t quite as good at it, of course.
The problem was that the audio sounded cheap and tinny, and we both wanted the show to sound like real radio, not like something done by a couple of amateurs in their spare room (though that’s exactly what it was). So we did several more weeks of rehearsal without even a microphone, while we researched the purchase of better equipment. And then her health issues started, and our energy and enthusiasm puttered away before we got anything on-line.
So there’s no audio of our podcast, because there was never a podcast. All I have is Stephanie’s notes for the weeks of rehearsal shows we did – notes found on a thumb drive a few days ago, notes I’ve read, re-living our practice podcasts. It would’ve been an enjoyable show for people to download and listen to, I think. Maybe not as good as she wanted it to be, maybe not Radiolab or This American Life, but it would’ve been better than some podcasts I’ve heard. Instead it’s another dream that became a disappointment. I’m so sorry, sweetheart.
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She dreamed of walking again, but that was not allowed.
It was, in retrospect, a remarkable cruelty – when a doctor told Stephanie that the infection in her leg had reached the bone, and there was no hope of stopping it short of amputation, he added easily in his next breath that she would soon be walking with a prosthetic leg.
In answer to Stephanie’s questions, the doctor explained that a prosthetic leg would actually be an improvement over the leg they’d be cutting off. Walking on her infected leg had been difficult for months, and more and more painful, but her new prosthetic leg would be virtually painless, he said. Fitting would be quick and easy, said the doctor, and training and the related physical therapy usually takes only a few months. After she became accustomed to her new leg, why, she would probably have no noticeable limp.
We later tried not to hate that doctor. Perhaps his glib answers were true for most people who have leg amputations. I don’t know anything about “most people,” but for Stephanie almost every word he said proved untrue. After the amputation, Stephanie spent the rest of her life in a wheelchair.
The amputation was followed by unrelated complications, which meant that the whole process of fitting her for a fake leg was delayed by months. Much of that time, she was in a nursing home and unable to get out of bed, even to go to the toilet.
Then, her first appointment with the prosthetics lab couldn’t happen until someone judged that her stump had healed enough to wear a prosthetic, and even that took weeks and weeks – not for the healing, but simply getting someone to evaluate the healing. The evaluation was postponed repeatedly, until we started raising a stink about the delay. When she was finally seen for the evaluation, we were told that the stump looked ready to go – and looked like it had been ready for a prosthetic fitting for quite a while. The frustration was palpable, and just beginning.
When she was scheduled for that long-awaited appointment to be measured and fitted by a prostheticist, it was a morning appointment – which seems ridiculous to me now, but we were new to all this. We assumed that the professionals would know what they were doing, but they didn’t.
Here’s something you might have never had any reason to think about: Your leg is not the same size all day long. Your legs are the lowest part of your anatomy; gravity pulls blood and fluid downward, so you can reasonably predict that your legs will be plumper at the end of the day than at the beginning of the day. Most people’s legs swell up a bit each day, and then shrink a bit overnight. The swelling and shrinking isn’t much, but it doesn’t take much to make a metal and molded-plastic prosthetic leg an uncomfortable fit.
But they measured Steph’s stump first thing in the morning, and we later believed that was the baseline problem. That’s why her prosthetic leg was always uncomfortable, to the point of blisters and bleeding. It was a tight fit every morning, and hurt like the dickens a few hours later.
To compound the problem, the prostheticist would never agree to re-measure the leg or re-make the prosthetic; instead he “tweaked” it by loosening (or saying he’d loosened) some setting or other. He gave Stephanie “shrinker socks” to wear on her stump overnight, putting pressure on the stump to shrink it, and then myriad “stump socks” to add circumference when the shrinker sock had shrunken the stump so much that the prosthetic became too loose instead of too tight.
Too tight, too loose, and always too painful. Stephanie was never able to wear the fake leg for more than a few aching hours at a time. At one point she had to sign an acknowledgment for receiving the prosthetic, and we marveled at the bottom line – our insurance had paid about $15,000 to have that uncomfortable, unwearable prosthetic built. It was the most expensive decorative piece we owned, sitting in a corner of the living room attracting dust.
For the last two years of her life, fighting to get the prosthetic leg re-measured and re-fit was near the top of our To Do List. We knew it would be a struggle, though, and Steph wanted to wait until she was feeling better and had no other major battles to fight. So we put that endeavor on hold, but there were so many other health issues to deal with, the battlefield was never cleared. We never marched into their office to demand a better leg. Thus the promise of walking again after the amputation, with no great effort and no perceptible limp, was another aspiration never attained.
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And of course, she dreamed about the restoration of sanity to American politics, about a time when very stupid people who believe demonstrably unfactual facts are seen as simply wingnuts, instead of being elected President of the United States.
Why, yes, it’s Donald Trump I’m referring to. We thought we’d seen some lackluster politicians and untrustworthy Presidents in the past, but with Trump the lies never end. If he’s talking he’s lying, and when he’s not talking he’s busy dismantling legal protections for the environment, for minorities, for women, for LGBTs, for immigrants, for the poor, for the disabled, for the unhealthy – everyone who’s not a billionaire is worse off under Trump.
I’m allowed to talk politics without hesitation here on Steph’s memorial website, because I know that Stephanie agreed absolutely with everything I’ve just said. The only difference is, she would’ve said it better. She loved America, and it’s no exaggeration to say that so long as Trump is in the White House, everything that makes America great is imperiled.
Stephanie would be pleased to know that I early-voted a few days ago at the library. She never missed voting in an election. Voting meant America to her. Among many other positive traits, she was a good citizen, and some of that rubbed off on me. I promise I’ll never miss an election, long as I live.
She would’ve voted if she could have, and she would’ve voted the sanity ticket all down the ballot, same as I did. I’ve added her uncast absentee ballot to the Shrine, and I’m hoping next week’s election gives her one dream come true, posthumously.
More about Stephanie.