Stories

Our goal is to introduce Parkinson’s patients, their families and caregiver, as well as therapists and the health care community to the cutting-edge, voice-strengthening app, HAL. We aim to educate the general public about Parkinson’s disease and remove the stigmas surrounding it so that patients can boldly step forward and seek the support they need to navigate their symptoms. Hal and Minter are a splendid example on how to continue to create and live a loving, vibrant life while managing the challenges of Parkinson’s disease. They are unique vanguards to the HAL app and to the Parkinson’s community on a whole, offering our participants educated, candid, illuminating, and often times humorous accounts of their experiences. Through Minter’s stories, readers will learn how she and Hal dealt with Parkinson’s disease at its early stages, and then living with the disease for twenty-two years. A gifted poet, and with a deep sense of humanity, Hal writes forthright as a defining action and inspiration. Minter has meticulously documented and written about the many complex and various aspects of handling life with Parkinson’s; she brings the perceptive of an accomplished writer and a wife/caregiver of someone who has Parkinson’s disease.

For Better or Worse

by Minter Krotzer

I think about my wedding vows from time to time, mostly the “for better or worse” part. When you agree to “for better or worse” you think, or at least I thought, we’d have a long period of “better” before having “worse,” it’s like a bet with God. I married Hal despite what might come ahead, but in the back of my mind I believed it would be a while before we were tested. The worst would come later, much later, in ten or twenty years, or so I thought. I expected to have time enjoying my husband while he had some control of his symptoms and we lived a close to normal life. His illness would get worse when he was older because that’s what happens when you get old. I had the notion that our middle-aged youth somehow protected us and it wasn’t the natural order of things to be met with challenges anytime soon. What I’ve learned about life so far, and especially from Hal’s illness, is you never know what to expect or what the timing of things will be. Each day is different and each month and year is different. Having expectations or belief in order and predictability is futile, almost naïve. I read in a Buddhist book long ago that the secret of man’s discontent is his expectations and so I have tried my best not to have any. This can be difficult, though, because you need hope to get through the day, and expectations sometimes arise out of the hope you have created.

The Voyage Across the Room

by Minter Krotzer

We’re at Two Boots in Brooklyn, having dinner with the editors of Hanging Loose press, old friends and publishers of Hal’s. Two Boots, is a Louisianian/Italian restaurant in Park Slope (boot of Italy, boot of Louisiana/food of Italy, food of Louisiana), decorated with paraphernalia from both places – plastic wine grapes, Mardi Gras beads, maps, doubloons, a papier mâche alligator and empty Chianti bottles- fond reminders of my home state of Louisiana. While waiting for a table, we observe children riding the electric alligator outdoors, we watch pizzas being made and a local Cajun band beginning to set up. We stand in the crowded bar waiting for a table, watching people drink the special Two Boots Bloody Mary’s and Hurricanes. No one likes a crowd or waiting for a table but for someone with Parkinson’s it is even worse. In Hal’s case it has to do with needing a clear path, so that he can focus on moving ahead when the time comes. Sometimes he walks with his right arm bent behind him in the air to help with his balance – like a sail or fish fin plowing through the water. I know, from the look on Hal’s face, that he is worried about trekking through the crowd, the tipsy bar flies, the hungry children, people not paying attention because they are out having fun. What I’ve learned to do is walk ahead of him, clearing a path, saying “excuse me” in a polite tone. Usually people will step aside but not always in New York City, where space is a commodity. When the hostess comes to bring us to our table, she leads us to a booth in the far corner of the room, all the way across. I sigh, knowing it will be hard for Hal to make the trek (we had not yet learned to mention needing a table close by). Our group follows her, and then I follow them, in front of Hal. It is not easy: the tables are crowded together, waitresses hold trays of calamari and pitchers of beer high up in the air, children throw balls of pizza dough and dart from table to table. There are parked strollers, too, and loud music. I can hear Hal’s quiet shuffle behind me. I turn and look to make sure he is okay but he is focused on the voyage across the room, using every bit of concentration. I quickly turn away, looking ahead, making sure he doesn’t notice that I am concerned and that the path is still clear. Eventually we make it to the table and Hal sits down with relief. Now there is the voyage out of the restaurant, at the end of the meal, which I’ve already started thinking about even before looking at the menu. Can we make the walk home or do we need to take the subway or bus? 

Crowded restaurants, sidewalks and parties have become a problem, the newest challenge of his illness. With Parkinson’s it’s best to keep going and not stop because you don’t want to have to re-start again because that’s when you freeze. For years, Hal and I had been going to the Norwegian Consulate’s Christmas party because of Hal’s success in Norway. They were always the highlight of the holiday season and held in a different place each year: in restaurants, loft spaces, bars and art galleries. We’d recognize the same people year after year: Norwegian artists, businessmen, doctors, entrepreneurs, models and translators. Most knew about Hal and his “mother said” poems – some even brought their books to be autographed. I ended up finding this annual party to be a  “disease marker” because each year Hal’s symptoms were different, more pronounced. That final year in New York ended up being the last consulate Christmas party we went to. It was in a recording studio off of Chambers street and was one of the largest gatherings I had seen yet. Once Hal had made it across the room, he stayed there, not wanting to make the trip back or stumble through a crowd. Instead, people came to him and he held court. Hal would now always seek out corners at parties or a chair. I’d keep my eye on him to make sure he wasn’t alone too long and had something to drink or eat. I was developing a second sense, an attunement to his disability to make sure he was okay but at the same trying to be unnoticeable, so he wouldn’t notice my concern and think I wasn’t enjoying the party. I was learning the fine line of being watchful but also discreet, in my new role as a caregiver. Although I did not yet consider myself a caregiver in the true sense, the heightened awareness and attentiveness would be the beginning stage of that role, the shift from wife to caregiver-wife.

Top photo: Hal’s parents.

Jumping for Jesus

by Minter Krotzer

Hal and I went to the New Orleans Jazz and Heritage Festival one spring, just after I turned forty. I had been going to the Jazz Fest since I was a child, in the early 70’s, when it was mostly a hippie festival. Then it became hip, and now it is commercial, a huge production with t-shirts, posters, and music from around the world. In the old days, when it wasn’t so crowded, I saw B.B. King perform and Chuck Berry (there’s nothing like listening to “Johnny B. Goode while eating an alligator sandwich.) Nowadays it is almost impossible to navigate the crowds. We arrive early in the morning, to avoid them, but as the day progresses, the crowds get larger and lines start to form. The sun is direct and hot, overwhelming, even though we wear hats, drink bottles of water, and stand underneath shady oak trees. I’m concerned about Hal since Parkinson’s symptoms get worse in the heat and can cause fatigue. After standing in a long line for jambalaya with shrimp and oysters, and another for lemonade, I decide we need to find somewhere to sit so we don’t have to eat standing up in the direct sun. I look around for a place in the shade but can’t spot one. I check my map for a disability tent but none seems to exist. In all of the planning and years that this festival has gone on, you would think there would be a place for people who are disabled or handicapped. Instead, you see places to charge your cell phone or check email, even to send a Fed Ex package.

The fairground has tents for most of the musical acts, brightly colored striped ones with stages and straw floors. And there are uncovered outdoor stages too, especially for the larger acts. Performances go on even during heavy rain when people wear panchos, not even bothering to hold an umbrella. There is an attitude of survival here, to stick it out, no matter what, so you can enjoy the music and food and have a good time. Carrying our lunches, we try the bluegrass tent, then the Cajun and brass band tents. They are all standing room only. I’m at a loss about where to go, knowing that Hal needs to eat his lunch soon to process his medication and be in the shade. But then, in the distance, a huge white tent, without stripes, beckons us, appears on the horizon like a bold invitation, come to me. It’s the gospel tent, of course, and there are always seats and complementary fans. I hung out in the Gospel tent in high school; it’s where we would eat our pot brownies, in the back rows, so we could be high during the escalating beats and singing. No other tent was as good to be in after a pot brownie.

“Let’s go to the Gospel tent!” I say to Hal. He didn’t care where we went at this point so long it was in the shade and there was a place to sit. We head towards it. I have Hal’s paper plate on top of mine, with a napkin cover, as I lead, carving my way through the loud throngs, people wearing cut offs, men without shirts, women with bikini tops, tourists wearing Mardi Gras beads even though the season is over. It is just 1pm and many are already drunk and sunburned. 

As we get closer, I can hear the music and voices storming out of the tent. There is clapping and dancing and the sound of an organ. I spot some seats in the second to last row and point to Hal. We are handed fans as we walk in, with advertisements for a local funeral home, and head to our seats. A woman is on stage, Sister Theresa, who now has started singing a sad, slow song, with a chorus rocking behind her. At the end, she reaches out in the air and looks up, clenching a hand to her chest as she cries out for God. The shade feels restful and I fan Hal and then myself, as we sip on the lemonades and finish our lunches. A little girl in front of us lies on the chairs, asleep, with her head in her grandmother’s lap as she fans the two of them. There is a break after Sister Theresa and we watch as a new band sets up on stage, a young group, all dressed in bright purple gowns with long sleeves, even in the heat. The electric organ pipes up and a young group, full of energy jumps on the stage, screaming ferociously. “Everyone get up! Time to wake up! Wake up for the Lord!” They pound the stage with their feet, shout “Praise him! Praise him!” into the microphone. The crowd gets up from their seats and starts joining in with the shouting. The music forms a possessive beat and we set down our dirty plates and get up too, despite our post-lunch, post-heat exhaustion.

“Okay, everyone, let’s praise the Lord. Let’s clap, clap for Jesus!” The leader of the group belts out. The audience claps and claps, sways back and forth. 

“Now, let’s sing, sing for Jesus!” And the audience sings “Let’s sing for Jesus.” 

“Now, are you ready? Let’s jump, jump for Jesus! I don’t care how old or young you are, I want all of you to jump for Jesus!” And the lead singer and choir jump up and down on the stage, even though they are sweating, even though some of them were too heavy and probably had no business jumping. 

The voices seem to carry and lift me up, and so, I, too, found myself jumping for Jesus. And then I turned and saw Hal jumping, thrusting his arms up and down, in his Hal dance style. Mothers holding babies were jumping, toddlers held the backs of chairs, jumping, there were old ladies with flowered hats, a man with a cane - the whole tent was jumping for Jesus.  We were swept up in the powerful music and the wondrous feeling of jumping with hundreds of people at the same time. We forgot about how tired and hot we were, or that Hal was Jewish and didn’t believe in Jesus or that he might fall. It didn’t matter that I hadn’t been to church in ages. None of it mattered, because we were having so much fun jumping for Jesus.

Walking on Water

by Minter Krotzer

Hal and I have been swimming this summer, in a friend’s pool, and it has become a kind of haven for us. It’s nestled on the edge of Fairmount Park, surrounded by woods on one side. There are blue and white striped cabanas and comfortable chaise lounges, a field of grass instead of concrete. The only thing missing is a waiter with a tray, taking drink orders.

It’s a large pool and during the week it’s mostly empty. We go at the end of the day, after writing. While I swim laps, Hal walks in the water. I only swim for a certain period of time but Hal keeps going until we leave, walking back and forth methodically, a kind of meditation. He uses his hands when he water-walks, creating small ripples of water around him.

The other day he walked for over an hour, until there was no one else in the pool. Dusk was beginning to settle in and all was quiet, except for the low splashing sounds from the walking. I looked up and saw deer eating their dinner at the corner of the woods, next to the tennis court. He was walking so slowly, so peacefully, that not even the deer were disturbed.

Tricking the Brain

by Minter Krotzer

When we take the dog on our morning walks, we choose the route with the best sidewalks even though there is a prettier way alongside the woods. Our favorite kind of sidewalk is newly made, with distinct lines and smooth concrete. In our neighborhood, sidewalks can be challenging because of all the trees causing havoc underneath them – roots bulging out and buckling the pavement. And there are blocks without sidewalks at all which we try to avoid, so Hal doesn’t have to walk in the grass or on the street.

Hal likes sidewalks because the lines in them help with his walking. Instead of avoiding lines, as admonished in the old childhood nursery rhyme, he steps on them with intention. The lines help him to establish a rhythm and a stride; they enable him to focus and move ahead. In being focused, he tricks the Parkinson’s brain; the thinking that he is taking normal steps instead of small ones. Looking ahead at the lines, he takes bigger, safer steps. It’s the same thing with walking on stairs – focusing on the steps helps Hal with moving up and down. Some people with Parkinson’s use a cane with a blue light to focus on the light’s beam ahead.

When walking without lines, on pavement or a trail, Hal’s brain reverts back to the Parkinson’s way of walking. He walks more slowly, with hesitation and short, jerky steps. This kind of staccato walking is dangerous since the feet shuffle and barely leave the ground; it’s the kind of movement that can lead to a fall. His physical therapist is always saying, “Take bigger steps.” I remind him, too. When he is walking on a sidewalk he doesn’t have to be reminded – the lines keep him in line- and he glides ahead sometimes even faster than me.

Micrographia

by Minter Krotzer

One of the symptoms of Parkinson’s is what they call “micrographia,” exceptionally small handwriting. All over our house you can find examples of it, Hal’s poems written in notebooks, on scraps of paper, handwriting so little that it appears to be like a fuzz or intricate design. The brain still thinks it is writing normally but it translates small on to the page – similar to Hal thinking he talks loud enough or takes big enough steps when he is really talking low and taking baby steps. If you hold a magnifying glass up to Hal’s handwriting you can see the precise details of his handwriting made small – no healthy human brain would be capable of making such a miniature- with all of the little loops, dotted I’s and crossed T’s. Hal’s love letters to me show the continued progression over the years of this illness. Earlier you could easily read his good school boy handwriting. Now I almost have to squint my eyes and use that magnifying glass. Hal’s says the micrographia stays pretty much the same size now but it seems, to me, to vary according to his “on” and “off” periods – when he is tired and it is the end of the day he is much more likely to write smaller.

The micrographia has been a challenge to Hal as a writer. He has developed the habit over the years of writing long hand in a notebook and then typing it out later. Nowadays he is sometimes not able to read the micrographia, though, and the writing he is not able to transcribe it and loses writing. What he tries to do now is type up the writing as soon as he can after he writes it. Lately he has changed his writing habits, writing on the computer first and not in a notebook at all, or only writing in a notebook when he has to.

An artist friend once commented on how beautiful the micrographia is, how unusual it is to look at, how amazing it is in its miniaturity. She thought about making an art exhibit of it and that thought has not left my mind. It’s something I’d like to do in the future.

Here is an example of micrographia:

When you look at them you can see how the writing gets smaller and less clear towards the end of a line. The copies here are enlarged so the real thing is much smaller.

Finding Out

by Minter Krotzer

At first you could hardly tell anything was wrong. It wasn’t until a month after we’d been dating I found out and it’s because he told me, not because I noticed. I’ll never forget the moment. We were in my apartment in Park Slope and had just finished watching a movie. I didn’t have any comfortable furniture, in my hodge-podge of street finds, so we lay on a big pink fuzzy blanket on the living room floor. We were sharing a bowl of chocolate mint chip ice cream and, right after the last bite, Hal leaned over to give me a kiss. I could still taste the mint in his mouth and smell it on his beard as it rubbed against my face. (I was not the kind of woman who liked beards but I had become fond of Hal’s.) After pulling his face away from mine, he looked at me. At first I thought he was just looking looking, like he sometimes did, but I detected he was trying to get up nerve. “I have Parkinson’s disease,” he said. He paused, as if to give us both a break after just those four words, and then continued: “But I am okay. Everything is okay. It’s a mild form.” He kept watching me, waiting for a response. I knew nothing about Parkinson’s or its forms. All diseases with names converged in my mind within one big abstract sphere (Lou Gehrig’s, Asperger’s, Crohn’s) so I didn’t understand what it meant to have Parkinson’s. I did realize having any kind of a disease was not a good thing, especially when it’s the man you love who has it. And it must be bad if he’s watching me this way, trying to read my face for a reaction. His consolation continued: “I am fine, really. I have good benefits, and insurance for a private nurse.” But none of these words stayed within my world of thoughts, I couldn’t think about any moment beyond the present. 

I turned from the hold of his eyes and looked out of the window, at the brownstones across the street, the view I had been observing for years: the elderly Polish woman’s house with the pigeons settled comfortably along a window ledge; the water towers on the roofs of apartment buildings in the distance; and the clouds sinking towards Manhattan. And there were the familiar background sounds too: the echo of voices from Seventh Avenue, children’s cries from a nearby yard, the persistent beeps of a truck backing up. The every day sights and sounds of Brooklyn were somehow different to me now even though Brooklyn hadn’t changed. 

Shaker or Freezer

by Minter Krotzer

While picking up dry cleaning at the New Spring cleaners in Brooklyn, I told them I will be moving to Philadelphia and thank them for the good work they have done over the years. The seamstress came out and said goodbye as did the owner and her husband.

“Here,” the owner said, handing me a Chinese wall calendar for the next year, “for you. Why leaving New York? “ She asked, concerned.

“My husband has Parkinson’s. It is hard here with the subways,” I explained. All three of them nodded. They knew Hal.

The woman behind me in line, a stranger, spoke up in a Brooklyn accent. “Is he a shaker or a freezer?” (With accent: shakuh or freezah?)

I had a puzzled look on my face, wasn’t sure what to say.

“You know, with Parkinson’s you’re either one or the other,” she explained. ”My father was a shakuh but my brother is a freezah.”

I had never thought about Parkinson’s in quite that way. The symptoms were very different for each person but I hadn’t realized that if you were a shaker then you usually weren’t a freezer. But I knew what she meant; I had never seen anyone both shake and freeze with this illness.

“He’s a freezer,” I answered.

Of all the years I’ve known Hal I have never seen him shake with tremors but he does freeze when he walks. Freezing is the term used to explain when someone with Parkinson’s tries to move their feet but can’t, they become glued to the ground. With Parkinson’s you can become a human statue, unable to move, grounded to the ground.

“It’s a hard disease,” the woman behind me continued. “I wish you and your husband the very best out there in Philadelphia.” (Every place outside of New York City is often referred to as “out there.”) Out there in the abyss.

“I wish you well too,” I said, waving to all, taking my dry cleaning and heading out the storefront. As I walked home, past all of the other stores I will miss, Terrace Bagels, the Kim Family’s Food Mart, the used bookstore, I think about how, in a minute long conversation at the corner dry cleaners, I learned something about Parkinson’s I had not known.

Sometimes it’s the everyday people you learn the most from, the ones who are also living with this disease, who speak of things matter of factly. We both knew there was a whole lot more going on than shaking and freezing but we didn’t say anything else. After all, this was small talk in a Brooklyn dry cleaners.

(Another version of this essay was previously published in the March 2015 issue of Wordgathering)

Isn’t It My Story Too?

by Minter Krotzer

In the beginning I used to think it was only Hal’s story to tell. He was the one living with this illness so he was the one who had the right to write about it. I encouraged him to write about his Parkinson's and he did. In fact, he wrote some terrific poems and essays, some of which earned him a Pushcart Prize nomination. But I kept seeing more things he could write about, almost every day, and I didn’t want to keep saying why don’t you write about this? No writer wants to be told what to write about much less a spouse-writer. (Not nagging about writing is an unspoken rule in our household. It’s hard enough getting away with nagging about non-writing things.) So I began to write about Parkinson’s myself, to tell the stories I had to tell rather than expect Hal to. And I did have a story. I learned that my experience of Hal’s Parkinson’s is not the same as Hal’s. Even though I am not living out the illness physically it is still a part of my daily life. It’s there in the moments, when I listen for a fall or try to distinguish Hal’s words, and in the larger realm of things, such as thoughts about our future, where we might live or travel to, whether we could have a kid. Parkinson’s affects almost all that we do and all that we decide to do. It’s there during introductions, on walks, in dressing rooms, at trash and recycling night, on the subway and busses, and shoe stores. It’s present in dentist’s offices, car dealerships, at dinner and during every phone call my husband makes. Parkinson’s is in the room when my husband gets dressed and undressed, brushes his teeth or when we make love. It’s there in his handwriting, his love notes, Valentine’s cards or grocery lists. It comes with us on trips, when we get on the plane, train or bus first and get off last. It’s there every time I look at my husband’s face, the masked Parkinson’s face that hides emotion and expression. It’s a part of decisions about going to parties, poetry readings and trips to Vermont. It's there whenever he reads his poetry aloud.

Mouth Yoga

by Minter Krotzer

When I woke up this morning, I heard strange exclamations coming from the living room. They sounded like extended yawns, or a prolonged version of the “ah” you make for the doctor. I put on my bathrobe and walked down the steps, to see what the noise was about.

Hal was sitting on the sofa, reading from a folder of papers, mouth opened wide. “Ahhhh!” he said, and then came another “ahhhh,” followed by an “uhhhh.”

“I’m doing my mouth yoga,” he explained, mouth opened wide, ready to make another sound.

Hal started speech therapy a couple of weeks ago and his therapist had given him homework. Aside from doing mouth yoga, he’s to read aloud thirty minutes a day, preferably from one of his own books of poetry. The idea is to exercise his mouth and vocal chord muscles, just like he exercises his legs.

“Ahhhh!” he calls out, this time with a longer emphasis on the “h.”

Meanwhile, the dog is lying on the sofa, in a spot of sunlight, oblivious to the unfamiliar sounds going on around her. Observing this domestic still life, Hal doing mouth yoga and the dog sleeping in the sun, I walk into the kitchen to make coffee.

First Diagnosed

by Hal Sirowitz

At first when I was diagnosed with Parkinson’s, I saw it as positive since I’m a stoic. It helps me to think that way. Since Parkinson’s is one of the slowest-acting diseases I could view my death in slow motion. I could practice dying. Then, I realized I didn’t need the practice.  Unlike a driver’s license, in which you need a license in order to drive, I didn’t need any permission to die. But the fact that I had a chronic disease – it would never go away but will haunt the rest of my life scared me. 

Some people let their illness define their life. I planned to define the Illness. You could divide the illness into two parts. The first part we – the sickness and me – were on intimate terms. No one knew I had Parkinson’s. And the people who noticed I was acting and walking a little differently were too nice to point that out to me. During the second part everyone knew there was something wrong. 

I thought of going to a support group; but my neurologist persuaded me not to. She said you’ll have time to see the future up close. Seeing people in wheel chairs will only depress you. I remember when my father was using a wheel chair. He had cancer. His gaze was intent on a dog who was running away from its owner. I told him great men accomplished great things while stuck in a chair like Franklin Delano Roosevelt fixed the country during the Great Depression. Father got angry and said that dog was probably laughing at him, because he had freedom and I didn’t.  

Nightmares on Steroids

by Minter Krotzer

At four in the morning, there is a crash. I jump up, Hal jumps up, the dog jumps up. It is the lamp, the gaudy lamp with pointy ceramic flowers, the one Hal inherited from his parents – the kind you’d see at someone’s beach house in the 1950’s. It has fallen off the night table, a victim of Hal’s nightmares. Hal thought he was fighting someone, punching away, but it was only the lamp. He acts out nightmares as if he is living them in real life. The lamp did not break; it is indestructible. I couldn’t help but think it could have been me he punched instead. I put it back on the nightstand and turn it on, finding that it still works. Hal is sleepy-eyed, groggy, barely remembering the dream. The dog keeps staring at the floor where the lamp fell, not understanding where the crashing sound came from. She is afraid and wants to leave the room. We give her special permission to sleep with us, just this one night.

Parkinson’s nightmares are common. Hal’s says they are the most frightening dreams he’s ever had. It’s usually the Gestapo or the mob who’s after him. Before the nightmares arrived a few years ago, Hal was dreamless. He’s gone from having no dream life to having the most intense dreams he’s experienced. He takes Klonopin for the nightmares, just half a pill, but sometimes they still come.

The bedside table is now pushed back against the wall so he can’t fistfight the lamp. Throughout the night, I check to see how close he is to the edge of the bed, encouraging him to move further in so he doesn’t fall out if a nightmare does come.

“Why don’t you get one of those hospital bed railings?” someone in my support group once asked. “Not yet,” I replied, “we’re not quite ready for that,” imagining that bed rails are the beginning of some kind of end.

The Parkinson’s Shuffle

by Minter Krotzer

I can hear Hal shuffling around the house. It’s his signature step, the Parkinson’s step, when the foot slides instead of lifting off the floor.  It makes my heart almost stop when I hear the shuffling get faster, as if there’s going to be a stumble or a full-fledged fall.

“Don’t worry,” Hal always says, “I’m not going to fall.” But I do worry, all the time. This makes being at home hard– listening for that almost fall.  While I’m writing or reading, cooking dinner or feeding the dog, I listen to Hal when he walks. Inside the house he doesn’t use a cane, like he should, because it’s one more thing to keep track of and when the cane falls (as it often does), it scares the dog. So, he prefers to hold on to furniture and walls, shuffling between them. The hardest walks are after he’s been sitting for a while, when the body becomes more stiff and rigid. He takes deep breaths before attempting the first post-sitting step, as he’s learned to do in physical therapy, hoping it will propel him to a second and third.

He wears heavy- duty shoes -Doc Martens- and they still don’t last long with all the shuffling, even with the thick, tough soles. We go to a special, old-fashioned shoe store, the kind that hardly exists anymore, where the salesman wears a tie, sits on a small stool and measures your feet, presses the foot inside the shoe to make sure of the fit. The salesman knows our names, first and last; he even remembers the last time we were there.

A friend was visiting from out of town last year and she commented that our poodle, Bijou, shuffles when she walks too. She thinks Bijou shuffles because she sees Hal shuffling, a pet becoming more like its owner.

Davy Crockett Country

by Minter Krotzer

It has been a long day in Tennessee and Hal is tired after dinner. I go into the guest room where we are staying, Hal is lying on the king size bed, asleep, still in his clothes, on top of the bed covers. His book about Davy Crockett is lying on his chest (we are in Davy Crockett country and he likes to read books about where we are visiting). I go up to him and kiss him on his forehead, telling him that he should take off his clothes and get into bed. I pick up the Davy Crockett book and lay it on the night table. I help him take off his shirt and pants and get underneath the covers. I love you, he says, his eyes barely open. I give him another kiss, on his mouth this time, gentle so as not to wake him up even more. I love you too, good night, I whisper. But then his eyes open wider and he kisses me back. When I look up, afterwards, I see how handsome he looks at this moment, almost ageless. Sometimes this happens when I look at him- I feel like I can see him at any age: as a boy, a young man, an adult before Parkinson’s. It’s Hal I see, the Hal beyond time, beyond age, and beyond disease. I feel lifted seeing those brown eyes, as if it is really just the two of us and no one, nothing else. 

(Previously published in Apiary as “Tears”)

Nightmares

by Hal Sirowitz

One of my worst experiences with Parkinson’s are the nightmares. I woke up one morning slugging the lamp. I knocked it off the stand won that fight, but it was a Pyrrhic victory. The lamp lost. I used to record my dreams every morning. Now, I try quickly to forget. The doctor gave me medication to reduce the intensities of the dreams. Many times I wake up with the Gestapo on my tail. I’m hiding from the Nazis. I got pretty good at interpreting my dreams until Parkinson’s entered the picture. Now, I think of ways to keep busy in the mornings, so I won’t think about the dreams. 

I’m like The Man of La Mancha, fighting lamps instead of windmills.

There’s a battle going on between the dreams (solace, clues to living) and nightmares. I used to make a joke all the time, by saying that when the cancers cells started to develop, I would tell them to go away, that my body has no room left, you came too late. There’s no more room left for you. 

T.S. Eliot in the Four Quartets measured his life in coffee spoons. I measure mine by how many pills I still have to take each day. 

My dreams popped up my ego. Now I hide my ego by my degree of activity. 

After Dinner Talks

by Minter Krotzer

“I’d like you two to have a conversation every night after dinner,” Hal’s speech therapist said to us.

That will be easy, I thought, we talk all the time. Or at least we try to. Over the years, Hal’s Parkinson’s disease has made him difficult to understand. His vocal chords have restricted movement and so it is hard for him to make it to the end of a sentence. He often swallows his last words or they just barely come out. Sometimes he sounds like he is underwater – the words indistinguishable from one another, blurry and pitchless. 

“There was a study,” she said, “most couples talk about logistics, things that need to be done. They don’t have substantial conversations.” 

And it was the same with us. In our case, though, it was because of Hal’s speech. We tended to minimize what we said to each other in the interest of comprehension and frustration.

“Start out talking for twenty minutes and then build up to thirty,” she suggested, as a personal trainer would prescribe the number of sit-ups or tricep curls, “and remember to start at the end of the meal, after he has finished eating.” After dinner, rather than during, because of the danger to Hal - the possibility of his choking or aspirating on food.

“How long do you want us to do this daily conversation thing?” I ask, taking notes.

“Forever,” she answered.

And so we began our after dinner talks, at the table with candles burning, our real conversations about topics we’d chosen. We each had a list. Sometimes the twenty minutes seemed to go on forever and we’d stop too early but then I started timing them with the kitchen clock. At first the efforts were minimal and tired, talking because we knew we had to, but then we started getting into it, taking turns with themes. We talked about books we read and films we’d seen. We shared ideas about our writing projects. It was often frustrating to try and understand his sentences but eventually I could, even if it took two or three repetitions. It was like the conversational French classes I had in high school; talking to someone in a language you were just learning, trying to grab on to the words you understood in the midst of those you didn’t. The difference is that in learning a foreign language, you gradually come to understand more, but in Hal’s case it doesn’t get easier. 

I have always learned something about him during our after dinner talks, even though we have been married for ten years. He explained he needed my help walking down the street, something I had been waiting for him to bring up, and that he’d preferred for me to hold out my elbow instead of asking him. We’ve talked about his early career as a poet, before I knew him and before the Parkinson’s diagnosis, when he performed in nightclubs and performance spaces. 

As pleasurable as the after dinner conversations have become, they are often still effort-filled and tiring and we usually end at the designated time. For Hal, it is exhausting to have to carefully say each word, practicing intonation and pronunciation while remembering to breath. I try to understand him, even though his words can be interpreted to sound like almost anything. The distortions can be humorous and we laugh about them– I’d think “just saw” was “chainsaw” or “chicken” was “children.” I have to make sense of the words in context of the conversation and subject matter. I keep reminding him to scream because a scream in Parkinson’s comes out like a regularly spoken sentence to the listener, even though it’s a scream to Hal. It’s the same with walking and writing: when he thinks he’s taking big steps they are small and large letters turn out on the page as indecipherably small “micrographia.” It’s the miscommunication between the Parkinson’s brain and the body. 

His therapist explained the forever part of the assignment that day. “His vocal chords need practice. He has to keep talking, no matter how hard it is. The more he keeps quiet the less practice he’ll have and the more they will weaken. It will become harder for him to talk at all.”

Hal always says Parkinson’s is not his identity, and it isn’t, as long as he doesn’t let it claim him, or as long as it doesn’t claim us. In giving up our attempt at communication, we would be allowing the illness to take over. That’s when it becomes your identity, when you let it be the boss.

Our after dinner conversations have now become a lifeline, a way to hold on to the pleasures of daily life that Parkinson’s is always trying to take away from us. In telling our stories and sharing our thoughts, in striving to be understood and to understand, we are not claimed by the illness that shadows our life together. 

(Previously published in The American Journal of Nursing)

The Hardest Secret

by Minter Krotzer

When Hal told me about his illness, he swore me to secrecy. Only his family knew about it and his best friend. He asked me not to tell anyone until he was ready. Like many, he was in the closet with Parkinson’s, trying to go as long as he could without anyone noticing. He was afraid of losing his job as a teacher and limiting his opportunities as a poet (he often performed two or three nights a week). But mostly, he didn’t want Parkinson’s to become his identity. On stage, he was interested in making people laugh, not cry. I promised not to tell anyone but I didn’t realize how hard it would be. In fact, keeping my husband’s Parkinson’s a secret was the hardest secret I have ever had to keep.

I am not someone who likes having secrets in her possession; I find them unbearable. I was afraid the Parkinson’s secret would burst out of me after a glass or two of wine.  The most difficult part of keeping silent was I needed to share what we were going through, to explain why Hal was not acting like Hal. I wanted everyone to know about our experience and to have support.

When Hal proposed to me one evening, a year later, I said yes. It was easier back then for us to downplay his illness since the symptoms only displayed themselves late at night – when the left side of his body would become stiff and his feet would have a harder time lifting off the ground. We both thought the worst would come much later.

When we went to New Orleans to introduce Hal to my relatives, I thought he’d be okay with telling them since he was becoming part of the family. But he still wasn’t ready. I worried they would figure it out but they didn’t - perhaps it was because they were preoccupied with the fact that I was marrying a poet. For dinner the first night, my aunt cooked her special jambalaya made with Andouille sausage from the Louisiana countryside. While cooking, she read Hal’s first book of poetry where his mother cautions him not to marry a gentile because her family will keep trying to feed him pork. She ran out and bought a rotisserie chicken for Hal who ended up eating chicken and the jambalaya.

At our wedding in New Orleans, months later, we left our reception early so people wouldn’t notice Hal’s symptoms. They began to appear at the end of the evening, even though he’d taken extra medication for the occasion. Ten was always the bewitching hour; the hour we rushed home for. We left earlier than my one-hundred-year old grandmother.

Hal’s body ended up being the one to give him away. Friends started to ask whether he was okay, thinking he’d had a stroke. We’d say he was tired from teaching but I could tell they knew something was wrong when we left parties early. Late at night, on our way home from Manhattan back to Brooklyn, the Parkinson’s medications would begin to wear off more dramatically - his left leg would start dragging on the sidewalk and his face would become expressionless (in what is known as the Parkinson’s mask). The transformation was like the story of Cinderella, when the coach would turn back into a pumpkin and the carriage drivers into mice. Hal would turn from Hal into a symptomatic Hal, or into a zombie as he has called it. We knew it was only a matter of time before we had to let people know what was really going on. There was no such thing as a mild form of Parkinson’s. Hal had only described it as such in the beginning, when his symptoms were not as bad.

By our first anniversary things got worse. Hal wasn’t sleeping well because his toes would club up into painful feet-fists in the middle of the night and he couldn’t walk at all in the early part of the morning. Ironically, he could walk backwards and I remember watching out of the window of the apartment as he walked backwards down the street to the subway entrance. He kept turning around to make sure he wasn’t running into anyone but no one gave him any notice (it takes a lot to startle a New Yorker). His neurologist suggested he go on disability, retiring from teaching after twenty-five years. Retiring early had not been in his plans; he wanted to stick it out as long as he could. Even the kids he taught were starting to notice something off about him. “What’s wrong, Mr. Cereal?” they’d ask him, not being able to pronounce his last name. Hal ended up coming out of the closet because his disease forced him to.  

There was freedom for both of us in having the Parkinson’s out in the open. He’d announce the fact before poetry readings in case the audience wondered why he his hands were in his pockets. “I’m keeping my hands in my pockets,” he’d say, “so they don’t knock over the microphone.” The crowd would laugh but I’d know how hard it was for him to share the truth, to shed his image of the cool East Village poet.  I felt relief not having the burden of such a big secret. It helped to talk to my sisters, parents and friends. We found, once the secret was out, the world was there for us and we had a community. We joined a support group, did the Parkinson’s walk in Central Park, and sometimes he was even given a seat on the subway. If he could still get away with it, though, I am sure he would still be in the closet. And why wouldn’t he? He’d have his job and regular income, a full pension. He would continue his travels around the world reading and teaching poetry.

A couple of years ago, we received an invitation to a friend’s retirement party featuring a drawing of him riding a horse into the horizon. He’d recently been diagnosed with Parkinson’s. When we RSVP’d we’d be coming to the party, he sent an email back to us: “Don’t tell anyone about my Parkinson’s. Please! Not even my mother knows.” Like Hal, and most other newly diagnosed, he’s going to stay in the closet for as long as he can get away with it. Now that I am free of my husband’s secret, I have those of others to keep. But it doesn’t get any easier, this keeping Parkinson’s in the closet. At the party, I ended up talking with our friend’s elderly mother, trying to keep the subject to poetry or the weather if I had to.

It’s interesting to me that people aren’t in the closet about many things anymore but they are about disease. Like Hal, they are concerned about holding on to a job and not losing benefits.  But keeping disease a secret has its own cost, adds pressure to a life already challenged by illness. I’d often see Hal become symptomatic the more concerned he was about being “found out.” I remember one year watching him read at the St. Marks Church poetry reading on New Year’s Day, where he read in front of hundreds. In the old days, it was no big deal for him to perform in front of such a large crowd, but in trying to hide the Parkinson’s he became more sweaty and agitated on stage. Many, like Hal, don’t want to bother anyone with their hardships; they’d rather people not know as a kind of protection for them. Suffering becomes a private matter.

So much has happened since that day back in Brooklyn, fourteen years ago, when Hal shared his disease with me. He now has electrodes in his brain, hooked up to a neurotransmitter in his chest, to replace the missing Dopamine. He has written three more books of poetry. We have made friends in the Parkinson’s community where we have met other poets and writers, painters, a former Olympic medalist, and a famous judge (who was convinced smoking pot would cure him). Our relationship has changed, with my growing responsibilities as a caregiver. The time when Hal’s Parkinson’s was in the closet seems so long ago; I can hardly remember it. Hal’s disability is now one of the first things you notice. He uses a cane and sometimes a walker. I walk alongside him with our dog, reminding myself to slow down so we don’t outpace him. We see more of the world this way, walking our slow walk together. And it’s okay. We aren’t in a rush to go anywhere.

Photos: Hal’s parents, and sisters.

Poetry and Parkinson’

by Minter Krotzer

The month of April was both National Poetry Month and Parkinson’s Awareness Month – a fact of particular significance in our household since I happened to be married to a poet who has Parkinson’s. Hal has been a poet for most of his adult life, with five books to his name and one laureateship (as the former Poet Laureate of Queens, NY). Being a poet is Hal’s identity and his love. The Parkinson’s has become a not so welcome part of his life, though, one that he struggles with every day, every moment. Hal has had Parkinson’s for almost twenty years now, he struggles to walk, swallow and speak. But he doesn’t let the illness stop the making of poetry; it’s too important. In fact, the Parkinson’s motivates him to work even harder, writing against the movement of time, not knowing how much longer he will be able to do it. He writes even though his handwriting has become indiscernibly small, “micrographia” (the smallest letters you’ve ever seen), and even though he loses steam.

Since having Parkinson’s, Hal has written three books, travelled to Israel, Finland and Iceland to perform. The American Embassy gave a party for him in Reykjavik, where two of his books were published, and where he performed on National Icelandic television right before the “adopt a cat” show.

Hal writes about Parkinson’s now, too, poems that he’s performed all over the East Coast. We’ve taken to the road, so he can read his Parkinson’s poems to support groups, hospitals, and conferences. The Parkinson’s poems encourage others struggling with this illness, help them to find some humor in the unfortunate circumstances they find themselves in.

Being married to Hal, I’ve seen the power of poetry, or the written word, to transform. Through poetry, he has been able to forge a way through the illness and make art from the experience. To me, this is what writing is all about, going beyond the constraints of our lives, or the pain and limitations of a disease, and sharing one’s experiences with the world. In doing so, he encourages, inspires and lifts up. Keeping on with the writing of poetry is a way of saying “so there” to the Parkinson’s – I’m still at it.

(Previously published in The Philadelphia Inquirer on April 26, 2015)