James and Me

To mark its 50th anniversary, the Belgian organization Ziekenzorg CM held a prose and poetry competition on chronic illness. A selection of eight short stories and ten poems was published in the book ‘De pen als bondgenoot’ (ISBN 90-441-1059-4). Each story and poem offers a personal account from individuals with chronic illnesses or those close to them, showing how a chronic condition influences life, relationships, and work. They share how they have learned to live with illness—a life in which certainties have been replaced by the unknown, by fear, pain, and helplessness. The relatable stories and poems are conveyed in a personal and direct style that is easy to read. One of these stories was written by Agnes Spruytte - Lauwers, my grandmother. Ziekenzorg CM included her story in the book, and I would like to offer her story a place in the digital world as well. Enjoy reading. – Brecht

I Have a Relationship…

A few years ago, I met someone. He was following me without my knowledge, someone I hadn’t known at all before. Now we stay in constant contact — he with me, I with him — and our bond keeps growing stronger. We can’t be separated anymore.

His first name starts with a J, the J of “James.” Honestly, I find it annoying that James shows up so regularly. Sometimes he can be a real nuisance. So I could call him “James Last.”

It’s always James who takes the initiative, but I have to admit I sometimes feel weak. I already have someone at home, someone I promised to stay true to for life. So, in a way, I’m in a relationship. But it’s not what people usually call a “LAT” relationship (Living Apart Together). It’s more of a love triangle—my husband and me, plus James. The three of us live together.

My late mother would have said, “Just get rid of that guy and do your duty!” But James is stronger than my will. He’s scrambled my mind, both literally and figuratively.

James came into my life against my will; plus, he’s actually a foreigner. We’ve been involved for more than 10 years now. At first, I hardly spoke about it with anyone. I thought I had good reasons to keep it to myself.

James is romantic. He likes to sing, though his voice is a bit husky: “I’m so sweet and gentle, always sentimental.” He loves dancing, usually preferring a slow waltz where we gently lean forward. I try to better understand his traits and his language. “Slowness of movement”—that’s a typical feature.

In our early acquaintance, I felt a bit overconfident. Gradually, though, the rosy glow faded, and we both became impatient, irritable. When we strolled together through the streets of Barcelona, it bothered me how he dragged his right foot on the cobblestones. Sitting on a bench, we watched a mime artist. Yes, that would really be something for James—standing motionless for hours, staring blankly. He almost seems to have an eastern, unhurried nature. Certainly not an energetic type.

James also has a weakness for “drugs.” At every meal, he pulls out his pills.

Some insiders suspect this foreigner is from Pakistan. No, he actually lives across the Channel. I only discovered his true nature by reading a newspaper article devoted entirely to him. James is no ordinary man! He’s a London-based doctor, a true gentleman, and was even knighted for his contributions. So he’s entitled to be called Sir James.

I’m sure he genuinely loves me. He keeps repeating that in his love letters. Admittedly, his writing is tiny—almost illegible. Luckily, I can usually guess what he’s trying to say. I know he cares, because he’s made it easier for me by writing on a computer now. Is it my shyness that intrigues him, my sensitivity? Why did he choose me, of all people? So far, nobody’s been able to explain it.

James is a globetrotter. He seeks people out, regardless of rank or status, in every country—like farmer A., Dr. C., and mail carrier E. in Flanders (Belgium), banker B. in Switzerland, Prince Claus in the Netherlands, boxer Ali in the USA, Pope John Paul in Vatican City, and statesman Deng Xiaoping in China.

People around me are starting to suspect something. Only later did I grasp Sir James’s intentions. He knows exactly what he wants, and he forces me gently. Whenever we have a “faux doux” face-off, I feel helpless and unsure. I even start trembling under the icy grip of his hands. My smile fades behind a somewhat rigid, melancholic gaze. Could it be a midlife crisis?

My husband regrets my “liaison” with James, but fortunately, he understands the situation. Every time James makes a move, my husband seems to love me even more. Is it a “dangerous liaison”? No, my life’s not in immediate danger. I just have to learn to live with James.

Well, why keep you guessing? Yes, I’m having a relationship with someone named James—that’s true. His last name is Parkinson. James Parkinson is a London physician who first described this incurable disease in 1817. Hence, the disease bears his name.

So yes, I have James Parkinson’s disease. Living with a chronic illness is a challenge—a “challenge with James”—for the rest of my days…

What’s Going On?

I’m not even fifty yet. I’ve started noticing how heavy the chairs in the house seem, and how the knife doesn’t cut as well anymore. I also struggle to stir the sauce. Something’s going on with me.

The distance from the parking lot to the school feels longer; it’s hard to keep up with students in line, and I’m always lagging behind. Instead of strolling through the village, I choose to rest on a bench. I drag one foot along the floor—my right foot. Something’s wrong with that foot, or rather, there’s something going on with both my hand and my foot.

My husband says, “You need to stand straight when you walk—you’re leaning forward. Can’t you just let your arm hang?” I was pretty startled when I saw the video of our silver wedding anniversary. Could it be arthritis or rheumatism? My neck hurts constantly, so I go to physical therapy. There’s more going on than just a foot or arm problem.

I’m constantly tired. I only teach twelve hours a week, but even one full day wears me out. I need a midday nap. In the evening, I can’t manage to go by the grocery store. I come home and sometimes fall asleep on the couch.

Even at choir practice, I can’t wait for it to end, although I really love singing. We play cards with the kids still in high school. If I’m going for a trick or playing a “miserie” hand, I start trembling—though we’re not even playing for high stakes.

When the school year starts, I feel like everyone’s eyes are on me, and I begin to tremble. I fleetingly think of Parkinson’s disease, but dismiss it—it’s an illness for old ladies, right? Yet even when I’m calmly teaching, I notice my paper shaking.

I don’t know anyone personally with Parkinson’s. A friend once told me about caring for their eighty-year-old mother at home, “until it became impossible.” I also recall an older man, sitting sadly in his chair; his sister called him “the poor fellow.”

A colleague once remarked, “The students say you teach very well, but you speak rather slowly and monotonously. You probably can’t help it.” Over lunch, I tried telling an exciting vacation story—my right hand trembled, and I tried to hide it under the table. I tested myself, telling this story to a smaller group, then just one person. That went better each time.

In mid-August 1988, I sang the Hassler Mass with our local church choir for the first time. Our timing was off—the sopranos started, then the altos. My alto voice was momentarily flat, and I began trembling and sweating. I could hardly hold my folder and ended up following along with my neighbor. I felt panicked. It couldn’t just be the incense. I was angry at myself.

Yes, something’s definitely going on with me—body and mind both.

I casually mentioned the fatigue and helplessness to my general practitioner. “There’s definitely something with my right arm,” I told him. He advised me to see a neurologist if things got worse.

On Wednesday, January 4, 1989, I was about to go grocery shopping. I pulled the newspaper out of the mailbox and, as usual, skimmed the headlines: “Parkinson’s Disease: New Challenges.” I kept reading. The article said the disease mainly affects older people, but also those under fifty. Tremors aren’t the only symptom—there can also be slowed movements, a stooped posture, difficulty walking, and so on.

That very day, I dug into all sorts of materials. In an encyclopedia, I stumbled on the exact symptom—some patients hold their arm as though carrying a handbag. From everything I read, I became certain of my own diagnosis: I have Parkinson’s Disease (PD).

My knowledge of illness is no greater than anyone else’s. I haven’t studied medicine. Someone once asked me, “Pakistan’s disease? Yes, I know someone with that—it’s a nerve issue.” But that doesn’t mean I’m mentally ill in the sense of imagining symptoms. Parkinson’s patients also remain mentally sound.

PD is a neurological disorder in the brain that influences every aspect of life. Something’s going on with me, with my brain!

Who’s Behind James?

I only wrote the piece I Have a Relationship a few years after my diagnosis. Without fully realizing it, I’d decided to picture Parkinson’s disease as a person who constantly accompanies me—someone I have to accept in my life but who shouldn’t dominate it. Hence the title: I Have a Relationship with JAMES.

Writing or reading about an illness isn’t particularly appealing. People would rather have fun while they still can—life’s sad enough as it is! But writing about a relationship sparks more curiosity. Though, these days, that topic can also feel fairly routine. I just don’t want my efforts to go up in smoke!

Writing is good therapy for me. Honestly, it’s not just about complaining; I want to enjoy writing, too. And I can do that as long as I can inject humor into what I write.

Can humor coexist with a serious illness? People often say, “Comedy is close to tragedy.” Jokes are usually shared in lively groups. But in the world of the sick, laughter might be needed even more. I always find relief when I can blow off steam through humor.

“A relationship with James!”

Who is James? People get intrigued, and it can be misleading. I enjoy seeing the reactions of surprised readers. A friend who read the piece wrote to me, “Halfway through, I said out loud that I never expected you would dare have an affair…!”

Primarily, it’s a game to illustrate the symptoms in the story as clearly as possible:

“James scrambled my mind, literally and figuratively.”

• “Literally scrambled”: PD is a neurological disorder in the brain that impacts every aspect of life. Its mechanism is known: brain cells in a specific region gradually die off, disrupting the regulation and coordination of movements.

• “Figuratively scrambled”: Around 40% of patients experience mild or severe depression, more than with other chronic diseases. The disease can cause depression, but depression can also be part of the disease itself. Often, misunderstanding from others leads the patient to withdraw.

“…without me even knowing it.”

The disease emerges slowly. Could it be just a midlife crisis? Parkinson’s typically appears between ages fifty and seventy, but it can manifest earlier. In fact, most of the brain cells involved have already died by the time symptoms appear. Conventional wisdom calls it an “old-age disease,” but there’s a big difference between having it later in life and being struck in youth. The actor Michael J. Fox was only thirty at diagnosis; I know a patient who was diagnosed at twenty-five.

“That relationship grows stronger; we can’t let each other go… I even start trembling in the grip of his cold hands…”

PD is a progressive disease that gradually takes hold. It advances at different rates in different people. Some become disabled quickly, others manage to maintain their abilities longer. Tremors are commonly recognized: they usually start on one side of the body and then move to the other. However, not everyone who trembles has PD. Cold hands and feet also come with the territory.

“James prefers a slow… slowness of movement…”
“…not an energetic type… strolling through the streets of Barcelona, dragging his right foot along…”

Slowness is a classic hallmark of Parkinson’s—showing up in walking, dressing, driving, and even talking. The thinking process can slow down, too. Most movements become slower and less automatic. Along with fatigue, there can be difficulties walking and balance issues. Indeed, I sometimes bump into doorframes, or drag a foot, and I drive more slowly, especially on complex interchanges.

“James can stare motionless for hours like a mime, with a blank face, a poker face.”

Stiffness and loss of facial expression are also key symptoms. He can seem wooden and clumsy. Stiffness commonly affects the muscles around the shoulder blades and pelvis, and a stooped posture is typical. I do feel constant neck pain.

“James sings with a husky voice… always sentimental.”

My family says I can still speak my mind—just more slowly. I’ve noticed that under fatigue or strong emotion (like greeting people at a funeral), my voice can abruptly become hoarse.

“Love letters: tiny, almost illegible writing.”

I used to have neat, rounded handwriting—I can still see that in the letters I wrote to my sweetheart in the army (long before I met James). My writing has noticeably shrunk over the years, visible in my school planners from one year to the next.

“James Last is sometimes a real pest” “Against my will”

PD can bring various unpleasant symptoms: cramps, dry mouth, excessive salivation, incontinence, irritability, loss of smell, restlessness, easy intimidation, sudden stiffness (“off” phases), balance or sleep issues, eye and swallowing problems. I certainly didn’t choose James with all his irritating habits!

“Is it a ‘dangerous liaison’?”

No, I’m not in immediate danger; I just have to learn to live with James.

“Why did James choose me of all people? No one can say. James is a real globetrotter.”

Why these specific brain cells die off remains a mystery. The actual cause is still unknown. There’s no proven link between the disease and any particular place or social class. Some suspect environmental toxins might play a role. It’s believed not to be hereditary.

“James has a weakness for ‘drugs.’ He always pulls out his pills at mealtimes.”

In English, “drugs” simply means medications. Since around 1970, medications have existed that, while they can’t cure the disease, can counteract the symptoms. As the brain cells die, the body lacks dopamine, which transmits signals from one neuron to another. The signals get disrupted, causing these symptoms. By supplementing dopamine with levodopa, I experience significant improvement.

Medication cannot restore dead cells but can stimulate the ones that remain. Over time, a patient needs higher doses and more combinations. And because fewer cells remain, fewer can be activated. When problems become severe, surgery might be considered.

“My smile disappears behind a sorrowful gaze.”

Put yourself in my place—or any Parkinson’s patient’s—would you always keep smiling? Even if we want to smile, the stiffness might make it impossible (“poker face”). The combination of all these telltale symptoms is known as “Parkinson’s syndrome.”

Now you know “James and me” a bit better. We can’t break free of each other! “Accept what can’t be changed,” say the philosophers. “Come on,” people say, “R.I., look on the bright side.” They mean, lighten up.

Someone gave me Toon Hermans’ address. I’ve long admired his humor, especially the cheerful way he writes about serious topics. I felt an urge to send my short piece about my relationship with James to Toon, but without revealing Parkinson’s at first. I wondered if he’d respond.

Imagine my joy at receiving this handwritten reply:

Renate, your short piece is a little gem.

Toon Hermans – September 25, 1995

I’m following Toon’s advice and writing, because it’s on my mind (I mean the disease).

My First Steps With James

Everyone’s New Year’s wish in 1989 was: “Good health—that’s the most important thing!” So the most important thing in life is exactly what I’m missing, right? Is it really the most important?

Even so, I wasn’t discouraged by the diagnosis. Actually, I felt relieved that it wasn’t fatal cancer. That fatigue and need for sleep had really worried me. At least I knew now what I had to fight—James.

Exactly a year earlier, I’d had a laparoscopy. “There’s something with an odd structure,” they’d said, “we need to check it.”
I spent seven days considering the possibility of a fatal threat. But that experience ultimately helped me appreciate life all the more, even with a troublesome companion like James.

My husband’s words were a vital source of light. When I first felt shaken, he repeated the vow we made on our wedding day: “I’ll stay with you in good times and bad, in health and sickness.” I knew I could count on him, and I promised to do my best for however long we’d be together. Even now, that promise continues to support me.

My husband told our children. I sensed a certain hesitance. Meanwhile, I confided in a close friend who was a good listener. That same week, I received a compassionate note—what a meaningful gesture.

I waited months after my self-diagnosis before seeing a neurologist. I tend to avoid medication, and I knew they wouldn’t work forever. I felt I was doing okay, so I figured I’d save that “reserve” for later.

My first visit to the neurologist went well. The doctor offered hope: “We’re built to adapt.” I followed his advice: take medication, avoid stress, and stop teaching.

At first, I only needed half a Sinemet pill twice a day. The results were remarkable. I felt as though I were walking on air through the grass; Vivaldi’s spring seemed to play in my head. My husband was less thrilled—this confirmed the diagnosis. As for side effects like nausea, I didn’t mind. These pills seemed like a scientific miracle. Whoever invented them deserved a Nobel Prize. Of course, I realized such breakthroughs don’t happen through one person’s efforts but result from years of work by many researchers.

Looking back, I was overconfident in that period. I reread a note I’d written then, quoting a saying James sometimes whispers in my ear: “There are no problems in life, only challenges!” In my mother tongue: “Er zijn geen problemen in het leven, alleen uitdagingen!”

With James in the Valley

Gradually, the disease began affecting my life. I had to give up teaching. For family reasons, I chose not to share my diagnosis right away. Misunderstanding and prying from those who took over my role made me sink into a valley, alone with James. It’s so much easier for people to talk about someone than with someone.

James spoiled my singing in the local church choir too. That was my favorite group, sharing in both good and bad times. In my resignation letter, I requested to keep singing at funerals. James could handle that, and I’d stay useful. But the choir director wouldn’t allow it, and although a few people tried to mediate, he had other motives. The promised follow-up never happened, leaving me deeply disappointed.

Now I was brooding not only about my advancing illness, but also about a lonely future within four walls—neither of which I had chosen!

The neurologist said, “I know someone who can help you,” meaning professional help. I was startled—was I really that bad off? I refused to give in. I began studying psychology and self-help groups. The term “self” appealed to me; “help” not so much.

I searched for meaning in books and articles about powerlessness, disability, and friendship. I read Renate Rubinstein’s Nee heb je (“You’ve Got Nothing to Lose”) in one go. She was an MS patient who wrote powerfully and sensitively about her illness, with intelligence and assertiveness. I identified strongly with Renate. I wanted to do the same, writing about my experiences. But…I’m no writer—just an “ordinary woman on the street.” I felt discarded, overlooked, a nobody. I wanted to hide my sadness behind a pen name, so I became “R.I.”—Renate I.

And what does “I” stand for? “Patience”! I need that virtue, too. “Patience is a virtue, possess it if you can; it’s seldom found in women and never found in man.”

During this valley period, I also read interviews with celebrities and politicians. The first question is often: “What would be the greatest tragedy that could happen to you?” Many reply, “Becoming seriously ill.” Each time, it stings: “C’est la vérité qui blesse.” (Truth hurts.)

But what does it even mean to be seriously ill? An illness that can’t be cured, like most degenerative neurological diseases, can certainly be considered serious. In a sense, Parkinson’s also has something palliative about it. Toon Hermans put it more gently: “You don’t die all at once, but little by little.”

To me, those celebrity answers seem oversimplified. There are many types of tragedy and sadness. The worst tragedy is whatever burden you simply cannot bear. I don’t get to pick, but I do believe I can still take the reins of my fate. Doctors, caregivers—“the white world”—can lessen our burdens. The devoted, often invisible efforts of people at home, friends, and countless others can significantly bolster our ability to cope. When your capacity to bear suffering surpasses the weight of it, the illness feels less severe.

James and I struggled through the valley, eventually letting our soaked shoes dry and shaking off the last bit of dust.

How Do I Get Out of the Valley?

James gives me the answer: “A busy bee has no time for sorrow.” So we continue climbing the Parkinson mountain, stumbling but pressing on.

A page-a-day calendar offered this: “For your mental health, make sure you have a hobby.”

By chance, I acquired some old memorial cards. The artwork, the evolution of the texts—they were surprisingly interesting. My growing collection led to deeper study and a successful exhibition. The warm interest from others was incredibly uplifting. Focusing on something besides my illness felt therapeutic. I also discovered a fascination for local history. Learning about people’s histories unconsciously helped me take a broader perspective. And as Toon Hermans said, “To think about those who are no longer here…there’s a miraculous calm in that.” There’s plenty more I can do with this hobby and with listening to soft music—good for the time ahead, should I become less mobile. Once you get started, you find new possibilities you never imagined. Maybe you’ll try collecting stamps featuring birds or flowers. Then later focus on birds of prey or on roses. Trading with others can improve your collection and spark real enjoyment. You also learn to ask for help. This kind of hobby is perfect for exercising your memory.

I felt a yearning to sing with others again. Singing helps with vocal technique and speech rhythm. “Singing is beneficial, even on a purely physical level,” says Prof. Dr. M. Sebruyns. “You stand upright, take deep breaths, activate cells. It’s scientifically proven that our nervous system’s health depends on our activities.”

I know I shouldn’t stir up or dwell on sad thoughts. I need to feel good, to laugh, and find ways to enjoy life as much as possible. Singing generally brings joy: “Quand tout renaît à l’espérance,” “I immerse myself in it.” Certain songs can also stir sorrow—“Farewell, my brother”—but singing is still a release valve for emotion, a psychological boost. So I started a small singing group with friends. We make music quite casually, sharing a sense of achievement. James cooperates when the tempo isn’t too fast, but above all, it’s my determination that counts. Goodbye, worries.

Gradually, I rediscovered my sense of being “somebody.” R.I. = Renate Somebody.

I’m slowly leaving the fog of the valley. It feels good to know I’m not climbing alone. It’s reassuring when people stay close enough to accommodate James’s eccentricities, yet keep a watchful eye on him.

How Am I Doing Now?

“Now” is somewhere between the past and the future. The more I’ve been able to do in the past, the more I have to let go of. But I shouldn’t stand there sadly, staring at what I used to do better.

My life partner, James, fortunately doesn’t move too fast.

The “now” is important! Medication makes the illness manageable now. They aren’t really cure-alls. Without them, I’d be bedridden, forever in James’s company.

“Seize the day!” That’s Hagar’s philosophy: “Live one day at a time!”

So how does a typical day look now?

I shouldn’t just flap around like a bird in the sky; James warns me: “Failing to plan is planning to fail.” That means I schedule my day carefully, like a manager, around four daily medication doses—currently three types of pills in a compartmentalized box.

In short:

• Deep sleep.
• Wake around 4 a.m.; hard to fall back asleep; best time for inspiration.
• Cramps: James tinkers with my feet.
• Slow-motion start.
• Breakfast with first pills, soft music (largo, andante). Skim newspaper and mail.
• Personal care; house chores; at most one errand (presto, not prestissimo—avoid all “too much”).
• Feeling run-down.
• Lunch with second dose of pills. A midday nap—sacred home comfort with a fixed ritual: phone off, glasses on, lying on the couch, newspaper covering my face.

“Foreign” naps:

• On a bench amidst archaeological ruins at Ostia, near Rome.
• In a gallery among Gauguin’s paintings at the Hermitage, St. Petersburg.

Then coffee and a leisurely chat. A range of small activities (molto vivace) with the grandchildren: picking flowers, phone calls, working on my collection, making a mess (easy), cleaning up (hard), ironing (in two rounds), reading, TV news… so many things to do. In between, two more doses of pills, with each bringing ups and downs. I avoid gloom, noise, arguments, sudden decisions. Bedtime—sleep comes instantly.

“Patience overcomes all things,” James preaches. Patience conquers all.

And Later?

Whenever I worry about the future, James hums Doris Day’s tune: “Que sera, sera… Whatever will be, will be…”

But with a bit of humor, empathy, and a dash of assertiveness, I can echo the poet Guido Gezelle:

“Yes, there are still joyful days in life!”

I steer clear of the word never.

Renate SOMEBODY
“R.I.”