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.
* * * * * * * * * *
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 pretty good, but not 2/3 as good as Stephanie's
material.
* * * * * * * * * *
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."
* * * * * * * * * *
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.
* * * * * * * * * *
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.