I sit in the 100-degree water nestled as close to the font of the thermal mineral spring as possible.
Above me are the blue-and-green mosaic-tiled domes of the Gellert baths, adjacent the near-century-old hotel of the same name. Honeyed light streams through glass ceiling tiles into the steamy, cavernous room.
I study the women — young and old, bulbous and sinewy, naked and suited. I study how they glide across the wet tile floors, how they descend the steps into the water without a ripple, how the light glistens upon their muscled limbs.
And I wonder how the hell I am going to get out.
My arms and hands are now like twigs, the nerves that power the muscles snuffed out by Lou Gehrig’s disease. More precisely called amyotrophic lateral sclerosis (ALS), it is a neuromuscular disorder that is incurable and unrelenting, leaving those who suffer it paralyzed, muted beings before killing them.
And since I arrived in Hungary a few days ago, my left leg and foot seem much weaker and have left me limping badly.
I have fallen a good bit in the past year, at door jambs and carpet corners and stairs or just walking on flat surfaces. As the muscles in my foot weaken, my foot drops, and I trip on my own toe. I have a brace for my left foot now, which helps prevent that.
But here in the women’s-only bath at the Gellert Hotel, I have no brace.
And no husband to lean on.
My husband, John Wendel, and I came to Budapest in February to celebrate our 20-year wedding anniversary in the place where our life together began. For the first two years of our marriage, 1992 to 1994, we lived here.
John received a grant from the Fulbright Commission to teach, and I helped start an English-language newspaper after the fall of Communism. Those years were hands-down two of the best years of our lives.
So when I got sick and made my bucket list, Budapest topped it.
The Hungarian capital sits on a vast network of hot mineral springs and is renowned in Europe for the medicinal baths they feed. There are baths centuries old, saunas and thermal pools, salt rooms and steam rooms designed to cure any number of ills. Baths are such an integral part of health care here that some offer dental services on site.
Now perhaps you read on these pages about another bucket-list trip I wrote about last year, to see the Northern Lights in Canada’s Yukon Territory, and a magical dip I had in an outdoor hot spring there. It left me energized and hungry and wanting more.
That’s how I found myself going it alone at the Gellert — creeping along the slip-n-slide pathways of the women-only bath, stooped over, focusing a cosmic zoom on each step, trying not to eat the tile floor.
After soaking an hour, I exited the pool, clutching the brass handrails at the steps, and stepped on wet tile under the honey-lighted center of the room.
The ladies in the pools just stared as I struggled in the spotlight on the slippery stage in front of them.
“This is one of those moments I have to choose,” I told myself. “To feel sorry for myself or not.”
I chose the latter.
“How’d ya do?” John asked when we met up again.
“Fine,” I said excising any drama.
I try to keep drama, complaints, requests for help and tears to a minimum around John.
I refrain from declaring things like “I can no longer lift my left arm” because what a unending cascade of “I’m sorrys” that would start.
When I think of which position is worse to be in — to be the spouse dying or the spouse surviving — I think it’s the latter. For the survivor will experience the same grief, will live the grief of the children, then must assume all the responsibilities and slog on.
Already the responsibilities are overwhelming John. The cooking. The cleaning. Trying to get our three children — ages 14, 10 and 8 — in three different schools to stop bickering and help. It’s like an alarm clock goes off every 15 minutes with those three.
John now helps dress and bathe me, writes checks and letters for me, prepares food, feeds me when I am too tired to try to hold the fork, talks for me when my language slurs because the muscles in my mouth are also failing.
At the first inkling I might be seriously ill, I began paving a path for John, finagling to winnow our financial debt to nil.
I made clear my end-of-life wishes and my hopes for him if I die: That he remarry. That he find some gorgeous woman who (unlike moi) would do triathlons with him. That it would be fine to bring her to live in our home.
It doesn’t even need to be said “find someone who our children adore as well” — such is the absolute faith I have in his judgment.
We met 22 years ago at the Lake Lytal pool in suburban West Palm Beach, where I was a lifeguard and he was a swim coach. I first was lulled into love watching him swim, his long fluid strokes torpedoing him through the water. Next his gorgeous outer self — a 6-foot statue. And then the soul inside: a modest, strong, smart, steady but fun man.
Why do I have unshakable faith in his judgment? Because he has never made a decision I considered rash, selfish or foolish. (Save for buying a used Ford with 80,000 miles on it.)
John, a pharmaceutical sales rep, rarely ever speaks of his own hopes in a life without me.
Late one night, only after a few drinks, he got all serious and said he was ashamed to tell me something.
“Lord, what could it be?” I thought.
He said after I die he wants to go back to school to become a physician’s assistant. That it was a better career for a single father of three, and he believes he would be good at it and enjoy it.
I was thrilled!
A new career, a giant change-up in his life, will speed burial of the past.
“Don’t you ever feel guilty to tell me what you hope for without me!” I said. “It comforts me. It makes me happy.”
So you see, traveling alone, the two of us, to Hungary could have been a forlorn sojourn.
Except for an old friend, a Hungarian pal from 20 years ago, who changed that, who hosted us daily around this country that we often failed to recognize.
When we left Budapest in 1994, Russian and East German autos chugged along Budapest streets. One was the Trabant, a cardboard car powered by a mix of oil and gas that spewed so much pollution building façades crumbled.
Back then, our friend Feri Der (pronounced Feh-ri Dare), drove an East German truck called a Barkas, which broke down regularly as Feri hauled supplies for the home he was building. John helped him build, which cemented their friendship.
As we exited the airport, we heard Feri’s booming laugh of decades before.
“Szervuszstok!” he shouted, greeting us in Hungarian with hugs and kisses.
Feri left us to pull his car around, and as we waited we noticed a white Cadillac Escalade nearby. “Man, that’s odd seeing here,” John said.
And out of the Caddy hopped Feri.
On the ride from the airport that winter night, we saw for the first time the business growth that has rooted in Hungary. Gas stations, German groceries, billboards, giant box stores and — Lord help me — strip malls. Once-dark streets are now awash in neon.
In ’94, Feri was living in a shanty on his property in a Budapest suburb, building his dream home himself. He scraped together money bill-by-bill, shoveled the traditional muck-and-straw mix, creating walls nearly 2 feet thick. John remembers the day they went to the forest and selected the tree that is now the home’s master beam.
Feri showed us each detail: the scalloped roof tiles, heated tile floors, the iron window latches he himself wrought. “124 of them!”
And his sweetest spot — a large, underground wine cellar. The walls are special stones brought from Hungary’s winemaking region that keep it cool. And on them grows a black mold Feri ordered from there that imparts taste to the wine.
In that cellar, Feri makes magic — red, white, sweet, dry, and a Hungarian firewater called palinka.
In no time, we were taste- testing.
“Relieve your glasses of their air!” he would shout out. “It’s so good you’re here. It’s like you never left.”
Feri said for the occasion he had planned a special Hungarian stew, cooked over an open fire.
“Tomorrow we slaughter the rabbits for it,” Feri said. “John will do so, too.”
Now John is a gentle soul — never hunted, never handled a gun nor wanted to, and certainly never bashed a rabbit’s head, strung it up by its hind legs and slit its throat.
“You going to do it?” I asked the next morning.
“I guess,” he said with a deep sigh.
John helped me into my long black coat, my boots and brace, and parked me outside on the porch so I could watch.
After some palinka shots to start, Feri selected the first rabbit to die, a 12-pound gray-and-white one, the largest of his rabbit collection.
He bashed it to break its neck, strung it up and sliced.
But not hard enough.
The rabbit mewed and mewed.
Feri sliced again, cursing.
And the mewing stopped.
Together he and John killed three rabbits, skinned and gutted them, chopped them in pieces, John grimacing most the time.
As I watched, I thought more of John than the crudeness of the kill, of how bizarre it was to see him doing something I had never seen him do before.
And how comforting the sense it gave me was — that he will have another life one day full of new adventures.
Feri’s partner, Vikki, brought fixings for the stew, a mound of chopped onion, tubes of spicy paprika cream, a block of lard.
She made dumplings by hand.
Feri boiled the rabbits in a cauldron over the fire, adding wine and water and the fixings.
He brought one of his finest wines from the cellar, a red, a cabernet, liquid velvet.
We huddled round the fire, our glasses propped in the snow.
“I am so glad to be here,” I thought. “I am so glad to be alive.”
Most every day Feri was with us, chuckling, breaking into show tunes, playing his accordion, stuffing us — with wild boar, a smorgasbord of kolbasz from venison and other animals, and sour cherry dumplings he fell in love with while working in Russia.
He took us to various baths, helped suit me up each day, was a constant presence who lifted our spirits just being near him.
Feri is a former top executive with Avon. As their general manager in Russia, he propelled raising sales there by $100 million.
“The Russian women, they must eat lipstick for breakfast,” he said, grinning.
With no formal business training, he soared to that huge position on ingenuity and pluck alone.
Feri, too, has a serious personal problem he’s struggling with, an unhappy situation he sees no way of changing.
“Well, if you can’t change the situation, change your attitude,” I said. “You are the master of your mind.”
“That’s so American,” he said, rolling his eyes.
Another thing different about Budapest was an unusual big, wet snow.
We had never seen her gray, gray, gray streets frosted pure white.
We wanted to be out in the enchantment even though walking in snow is like walking through cookie dough for me.
John suited me up again in coat, brace and boots, and we set out to hunt for a restaurant we had eaten at many times, but couldn’t remember the name. I did remember, however, the enormous portions of goose and sweet cabbage with apples worth traipsing through anything to eat again.
And I remembered the location, on a small avenue off a large, central square called Deak Ter — a place I passed daily when we lived there before.
So we traipsed and traipsed, round icy spots on the sidewalks, down cobblestone streets, trying not to slip, trip or otherwise. John wiped snow off a bench and left me there to scamper ahead and scout the scene.
But no matter how we approached Deak Ter, we could not get our bearings and figure where the little avenue was. The billboards on the square and new shops made it unrecognizable to me.
We abandoned the search, saying, “Ah, well, probably closed anyhow.”
I found out that the newspaper I helped start, the Budapest Sun, had folded three years ago.
As I walked the streets, I remembered well the pride I felt working there, representing the ideals of journalism in an emerging democracy. And the opportunities it opened for me — to meet Queen Elizabeth, ask a question of Boris Yeltsin, fly on a military mission to Bosnia, to travel extensively, to learn things I otherwise never would have known.
John and I also lived abroad two years in Bogota, Colombia. Today those experiences leave me with an abiding sense that I have seen some of the world and known adventure.
One day we met up with a former colleague of mine from the Budapest Sun, Steve Saracco. We asked about that restaurant. He pointed it out as he walked with us to the subway at Deak Ter.
John and Steve helped me down the stairs to the subway entrance. It smelled just like 20 years ago, of fried dough and fuel. We bought the same little flimsy ticket, punched it in the same little machine, boarded the same grimy escalator cycling too fast. We waited on the same platform, underneath the same hideous orange ceiling for the same blue train. Not a thing had changed.
Sadness hijacked my spirit.
We bid goodbye to Steve, and I wept uncontrollably.
“Why are you crying?” John asked.
“I can’t find even find words to explain.”
On our anniversary — Valentine’s Day — John and I set out alone.
Feri reserved a suite at the Hotel Gellert, ordered cake and candles and champagne, and took us there.
Now visiting the Gellert is like visiting a beautiful grandmother. Worn, outdated fashions but classic features still classic, still delightful.
The art nouveau hotel, finished in 1918, has stained glass and wrought-iron accents, as well as Soviet-era eyesores, fluorescent lighting in hallways, bulbous sign lettering of the ’70s.
Feri snagged us the Richard Nixon suite, named so after the prez laid his head there twice.
“I know. I know. No Tricky Dick jokes,” John said to me.
The room’s small balcony overlooked the Danube River, ice floes drifting upon it.
We donned the hotel bathrobes provided for the spa, and John carried me down the stairs to it.
Then we parted into those steamy, segregated baths.
Afterward, energized, we bathed, our first moments completely alone in a long time.
As he shampooed my hair, I asked if he was OK with our decisions thus far — the ones not to go Google crazy and hunt for false ALS cures, not to clamor to be part of a clinical trial only to receive a placebo, not to falsely hope that a drug will soon come.
Rather, our decision to just be. Accept. Live with joy anyhow. And die with joy, too.
“I don’t know how you do it,” John said. “If I were you I would probably drive myself into a tree.”
“I have thought of that,” I said.
“Please don’t do that.”
“I won’t. Because the children would never understand.”
“Absent that, I would free you and me of this burden,” I said.
“It is not a burden,” he said. “The least I can do for you is everything.”
He lifted me from the tub, dried me, combed out my snarled hair, fastened my bra. “This is the one I hook on the loosest notch right?”
“You are getting good at this!” I said.
For the first time he put stockings on me — silken black ones so sheer he could easily punch a thumb through. “Careful!” I said.
He slipped the sweater dress over my head, knelt and directed my feet into my brace and boots. “Toe curled?”
Once again, he negotiated me into the long, black coat, bum arm first. “Thumb bent backwards!” I said.
And black hat. “Flower not fully forward please. Looks like I have a bunch of broccoli on my forehead.”
On the way to dinner, I tripped on the pavement and fell, tearing a hole in my stockings.
“Wanna go back to the room and change?” John said.
“No. I just want to eat and enjoy.”
And there in a quiet corner of the hotel restaurant we did.
We feasted on five courses, each with its own wine, laughing at the English translations — “flap mushrooms” — looking back at the descriptions, tasting for every ingredient described.
The walnut polenta and ginger of the carrot soup.
The green mussel inside ravioli.
The mangalica pork — a Hungarian pig with twice the flavor of regular pork.
The marzipan and raspberry gelatin of the dessert tray.
And we savored each sip — red, white, pink, dry, sweet.
We talked of the trove of things and people we have to be thankful for. We laughed at how on that same night 20 years ago after we married we both had said “What the hell did we just do?”
We talked of how going abroad had catapulted us into marriage. And what good partners we made.
The waiter asked if he could go ahead and bring the check as the restaurant was closing.
We ended with a glass of fine champagne.
As we walked out, I leaned heavily on John, knowing there was no way I could make it back to the room on my own.
There he undressed me and carried me to bed.
About the author
Susan Spencer-Wendel, 45, is a former longtime courts reporter for The Palm Beach Post. She resigned last year after being diagnosed with Lou Gehrig’s disease.
John Wendel, 47, is a pharmaceutical sales representative for GlaxoSmithKline. The couple live in Lake Clarke Shores with their three children, 14-year-old Marina, 10-year-old Aubrey and 8-year-old A. Wesley.
This summer Susan will take a trip alone with each child: Marina to New York City for shows and fashion, Aubrey to Sanibel Island in search of a lion’s paw shell. And Wesley is still deciding.
Susan can be reached at email@example.com or on Facebook.