Dreams and disappointments


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 said she wanted to apply 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 write much after our days of zines and love-letters, 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. She sent the paper 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 China, and New Zealand, 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, living in California and Missouri before settling in Wisconsin, so we sorta saw the country that way. But beyond the moves 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 road trip north almost to Minneapolis and back (350 miles), driving along the shores of the Mississippi River.
When she went on dialysis, though, our leash got 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. A single session of hemo costs about $500, so travel on hemodialysis was 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 or forty pounds — per night — which rules out long trips or 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, it seemed like a workable succession to our radio dream. 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, we decided to call it 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). 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.
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 we 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, and that was her biggest dream. But it was not allowed.
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 prosthesis 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, 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. Or so the doctor said.
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 that doctor said proved untrue. After the amputation, Stephanie spent the rest of her life in a wheelchair.
The surgery led to unexpected complications, and the 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. Four months after the amputation, she was finally seen for the evaluation, and 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 finally scheduled for an 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 on the bottom of your anatomy; gravity pulls blood and fluid downward, so most people's legs swell up a little during the day, and then shrink a little overnight, when you're lying horizontally. The swelling and shrinking isn't much, but it doesn't take much to make a molded-plastic and metal prosthetic leg frightfully painful.
Yet they measured Steph's stump first thing in the morning. We later believed that was the baseline problem. That's why her prosthetic leg was a loose fit most mornings, and then so tight it hurt like the dickens a few hours later. It was often painful, to the point of blisters and bleeding.
Despite our complaints, 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 internal parts. He tweaked the fake leg several times, to no discernible effect. He told Stephanie to wear "shrinker socks" on her stump overnight, putting pressure on the stump to make it smaller. He told her to wear several "stump socks" to add circumference when the fake leg was too loose instead of too tight. She had — no exaggeration — dozens of special socks in all manner of different strengths and purposes, which were supposed to shape her stump and force it to fit the prosthetic.
But still, the fake leg was too loose in the morning, too tight in the afternoon. Stephanie was never able to wear the prosthesis for more than a few aching hours at a time. When she practiced prosthetic-walking the hallway in our apartment building, she would be crying after just one painful "walk" to the front door. And still she persevered, practicing for hours on the stairs, until her stump was blistered and oozing.
After several months, she stopped the painful practice sessions. But Stephanie hadn't quite given up. Fighting to have the prosthetic leg re-measured and re-fit remained 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 healthy and had no other major medical battles to fight. Well, "no other battles to fight" was a day that never came. She was still recovering from the amputation, and her kidney specialist had switched her from dialysis at home to in-clinic dialysis, which always left Stephanie exhausted. She was arguing with the kidney crew, trying (successfully, eventually) to switch back to dialysis at home. Plus, there were other health issues to deal with, too complex to detail here. And she never wanted me to fight her battles, so I couldn't pound my fist on the counter in her stead.
And so, Steph's fake leg became the most expensive decorative piece we owned, sitting in a corner of the living room attracting dust. How expensive? 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 unwearable prosthetic built.
If it seems like giving up on the prosthesis was in any way Stephanie's fault or failure, then I've done a rotten job explaining the situation. You can't expect someone to continue walking on a prosthesis that literally drew blood from her stump. No, Stephanie simply got scammed by a prostheticist who did a half-assed job. And the promise of walking again after the amputation, with no great effort and no perceptible limp, was another dream dashed.