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My Eyes Tell It All

© Dick van der Heijde 2023

I’m the solitary witness
and I can’t believe my eyes
I want to shout out to the world
but there my problem lies
for half the world lies sleeping
 and the other half’s a dream
and the solitary witness
is somewhere in between

taken from
‘Solitary Witness’
off the cd Infinity Parade by Landmarq
written by
Steve Gee

Preface

After The Night Market On August 31, 1991

It felt as if someone poured a glass of cold water over my head. I was aware something terrible was happening, but I didn’t realize it was a stroke. In panic I shouted our family doctor’s phone number to Diana, but it felt like a spinning meatball was trying to pass through my throat  and my mouth was filled with yogurt. I thought, “Let it go, we’ll see where this road leads to”. Then I collapsed onto the bed. I vaguely remember how the doctor, who had arrived by then, scraped my soles and  how I was carried down the stairs on a stretcher. “Bye-bye bedroom,” I never saw it again. That’s when the lights went out for me.

What I remember very well are the things that happened in the days leading up to it. In Middelburg, I struggled with heavy rolls of carpet in a stairwell scraping the skin off my arms and  my final job was carpeting an upstairs floor for a former classmate. The following days I went on sick leave because I was tired and nauseous. I watched TV on the couch with a sleeping bag over me and saw a live video of IQ (one of my favorite bands). I also witnessed Mike Powell breaking the world long jump record during the World Athletics Championships in Tokyo. I will never forget the images of his celebration. On that fateful evening Diana and I went to the night market in Goes with my parents, my brother Marco and his girlfriend Silvia. Afterward we went to a café for a drink. They went home, unaware we would meet again a few hours later. The ambulance first took me to the Oosterschelde Hospital in Goes. From there I was transported to the Dijkzigt Hospital in Rotterdam for a brain scan. They told me there was nothing more they could do for me. On the way back my parents followed the ambulance constantly wondering if I was still alive. Once back in Goes I was kept out of reality on the Intensive Care with valium injections because I found myself at a crossroad.

A Familiar Face

Due to high doses of Valium I constantly had the most bizarre dreams. Diana had placed a cassette recorder on my bedside table and from the speaker came the most beautiful sounds of All About Eve with the fitting song ‘Dream Now.’ I remember this so well because the music often served as fragments in the background of my dreams. I dreamt  my arms were branches,  a cook in a nurse’s uniform accidentally dropped my voice into the soup, Marco and I were lost in London and much, much more. And while I lived in another world, everyone had to face the facts. A cholesterol clot had blocked the blood supply to my brain. In the brainstem, of all places; you couldn’t think of a more worse location! My entire motor function had shut down and  I couldn’t speak anymore. The only thing I could move were my eyelids. I had also become completely spastic. Later, through various tests, they found out I could see and hear. They also discovered my intellect was still intact. I had become locked inside myself. I was in a body that couldn’t communicate, with my normal mind intact. This is a very rare phenomenon, but medical science has a name for it: locked-in syndrome.

Dr. Terpstra, the rehabilitation doctor at the hospital in Goes, made inquiries at other hospitals and in the Netherlands, he could only find one other person who had something similar—a woman in the southern part of the Netherlands, who was cared for by her husband. So, I had locked-in syndrome. Now, a few years have passed. Some facial expression has returned and  I can express myself with blinking signals. When I mean ‘yes’ I open my eyes wide and for ‘no’ I close them briefly, but more about that later. The door that was once locked is now ajar.

After spending a month on the Intensive Care I was transferred to the Neurology department. There I had a permanent catheter to my bladder and  the feeding tube in my nose was replaced with a gastric tube (my super piercing). That’s when I was first put in a wheelchair. Fortunately, because at least I saw something different; I was tired of staring at the specks on the ceiling.

From the first days in the Intensive Care, Diana decided to take care of me at home in the future. It seemed better for both of us. She learned how to shave me, wash me, dress me, feed me and  everything else that was necessary. Thanks to her job as a care worker at a center for multiply disabled individuals she quickly mastered the caregiving tasks. Of course, this was also due to her big heart, immense dedication and involvement.

In the following months, I was allowed to go home regularly to practice home care. The first time was during the Christmas holidays of 1991; the stroke had happened just four months earlier. I was transported for the first time in a wheelchair taxi. I found it horrible. The big bus took an hour to pick up various Christmas revelers and  because I had a lousy wheelchair at the time, it felt like I was in a bumper car. I arrived home with a pounding headache. Diana had borrowed a height-adjustable bed from the nursing association and set it up in the living room. I immediately made use of it. Gradually, it became clear what I had been fearing for a while. Our house in ‘s-Heer Arendskerke, where we had moved to a year and a half ago and had renovated from top to bottom, was not suitable for a disabled person. It had dawned on me that it was better for us to move again.

After four months in Neurology, Dr. Scholten, my attending physician, declared me stable and  I was transported to Arnhem. Nestled among the woods of Arnhem is BRC, a rehabilitation center for children. I had made the choice to go there myself because BRC was just a stone’s throw away from De Kern, which specializes in communication aids for the disabled. Besides, I thought it would be nice to be among the children at BRC because I could use some liveliness after all those boring hospital hours.

During the seven months I spent at BRC, all the necessary adaptations were assessed and ordered. As the summer of ’92 was coming to an end, I was ready and went to the nursing home Ter Bosch in Goes for a short stay. I didn’t enjoy it there and realized there was no better place for me than BRC. What a transition, even though there was a youth section. But then they would have to change the nameplate on my door from Mr. Van der Heijde. By that time, I was already 29 years old and  it was terrible to see how the coughing old men and the hunched women shuffled to their designated spots in the living room every day.

I was so glad Diana had done everything possible to bring me home. When the wheelchair taxi finally drove me home in November, I felt immense joy and happiness. The same joy I had seen on Mike Powell’s face over a year ago. I felt like I had conquered the world. And not just me. Triumphantly, Diana opened the door and wheeled me inside.

1. “I have to read this to you first.”

It was a pleasant spring morning in April ’97. The melodious sounds of Pendragon echoed through the room and  the chairs and table had been pushed aside as I sat by the window, basking in the sun. My eyes were fixed on the garden gate, which swung open with a swoosh. My mother came walking through the garden, waving a newspaper with enthusiasm. It wasn’t particularly unusual as she would bring the newspaper and have coffee almost every day, but this time I could tell something extraordinary must be in the newspaper. She paused the CD player and said, “I have to read this to you first,” while tapping her fingers on the newspaper. There was an article about Jean-Dominique Bauby. Bauby was a Frenchman who, at the age of 43 in ’95, was struck by locked-in syndrome and managed to write a book by blinking his left eye. A writer named Claude Mendibil established his story. A few days after the publication of his book, “The Diving Bell and the Butterfly,” Bauby passed away.

The newspaper article also mentioned there would be a documentary about Bauby on TV the same evening. I sat attentively in front of the television with Diana in a chair beside me to read the subtitles. I have difficulty following them myself as the letters dance before my eyes as if I were intoxicated. Moreover, my eyes cannot read a text horizontally and  it’s not practical to tilt the TV on its side. I can follow English text well, but for other languages, I prefer the subtitles to be read aloud.

I recognized some aspects from the documentary, such as the rosy hands devoid of calluses, the safety rails around the bed and  Bauby’s aversion to seeing himself in the mirror. But overall, I found the documentary to be too somber and melancholic. It was poignant. Long dark corridors, a cold bedroom often filmed from above to emphasize Bauby’s isolation. I saw him gazing out over the endless sea in complete solitude and  I witnessed the monotony of the passing days. Brr, it gave me chills. I found Bauby himself to be a pitiful man. I felt like I was watching someone who had given up on life. This documentary once again made me realize how fortunate I am to receive care at home and still have a future. My optimism and positive attitude made it impossible for me to identify with Bauby. I absolutely didn’t want people to see me in the city and think of me the way I thought of Bauby. I thought it would be best if I also wrote a book so everyone could see  I am different from him. I had been hesitant about whether I should do this for months. I was afraid  I would spend whole days lost in contemplation and I would fall into a deep hole once I had written the last chapter. In the end, I made up my mind and decided to put my thoughts on paper. The reason for this was actually quite simple: I have something to say and  everyone should know it!

2. Sand In My Hands

It was a fortunate thing I wasn’t fully conscious when I confronted myself with locked-in syndrome. When I lay awake in my small room on the Intensive Care Unit, the Valium was doing its job. I mixed everything up, unable to distinguish between dream and reality. I thought I could walk for about five minutes, I had chewed on some gum. I convinced myself I regularly went to the bathroom. I even once considered Diana to be bossy and saw the clock’s hands moving backward. I couldn’t match voices to the right individuals.

The room on the Intensive Care Unit didn’t look like a room. I always imagined I was watching a vast deserted stage with actors waiting behind the curtains, ready to come out again. But they never came. I sat waiting for hours. What a silly rabbit I was. Nevertheless, there were moments when I could think reasonably well. A physiotherapist tried to explain to me what exactly was wrong with my motor skills and made the remark I had lost the brakes. I didn’t understand. In my perception, the brakes had been slammed so hard, everything had come to a complete halt. Until one time when I had to cough and my arms and legs flew about a meter up in the air; then I understood what he meant. Little by little, my condition became clear to me.

My initial thoughts were filled with tremendous anger. Why did such a profound condition have such a trivial name? Locked-in syndrome. I expected a beautiful Latin name. Locked-in syndrome. The fact  there was even a name for it. I tried to imagine how others would picture the locked-in syndrome. I quickly came to the conclusion  it was impossible. You can’t grasp it by staying still and remaining silent.

I had a comparison that perfectly captured the paralysis of my arms and legs, but I’ve never heard anyone else make it. It’s so simple. Who, as a child playing on the beach, hasn’t allowed themselves to be buried under a mound of sand? Just like Monique van de Ven in the movie “Turkish Delight.” How she screamed to get out! For me, this is the ultimate comparison to locked-in syndrome. Only, in this case, you have to replace the screaming with blinking your eyes.

3. A Surprise

I was eleven years old and  as often was the case, I was in Arjo’s room that evening, my neighbor and friend. I was reading an Asterix comic, while Arjo was assembling an airplane model kit. “Heidekid, your father has a surprise for you,” shouted his mother from the bottom of the stairs. Arjo’s mother had been calling me Heidekid ever since we moved in next to each other. It was already getting dark when I curiously entered our living room. There, on the table under the lamp, was a saxophone. My parents stood proudly next to it. “Tomorrow, Bram van Overbeeke will come to give you some guidance,” my father said, after I had claimed the saxophone, with all its buttons, seemed like the most difficult instrument to play in the world to me. Bram van Overbeeke was ‘Teacher Bram’ to me. He had been my teacher for six years. He was also the conductor of the local fanfare and played the saxophone very well himself.

Late at night, I placed the saxophone on the green bench in my bedroom and stared at it for minutes. Little did I know what a significant role the saxophone would play in my life.

After school, on Monday afternoons, I received saxophone lessons from Teacher Bram and joined a practice group with students from the fanfare. I worked hard and  soon I was allowed to play in the actual fanfare. I was given a uniform I hated because it itched so much. With pajama pants underneath, I marched, performed serenades, participated in competitions and  gave many concerts with the fanfare. I spent hours practicing in my room and improvising on the records I bought as a teenager. I imagined myself as Tom Barlage from Solution, David Jackson from Van Der Graaff Generator, Dick Parry or Mel Collins. I desperately wanted to play in a band.

With the transition from the third to the fourth year of secondary school I got a lot of new classmates. Some of them played the guitar and I was fascinated by it. Joost and Rick played various Beatles and Presley songs, Michel had a real Fender and Marcel Kroon from The Hague had a big amplifier. I loved everything they did. Together with Joost, I used my savings to buy a guitar and he taught me my first chords. Being fickle as I was, a few months later I bought an old drum kit for a hundred guilders and along with Arjo, who had become a punk rocker by then, we formed our first band: D-Control, a punk band. My skills as a guitarist and drummer were miles away from those as a saxophonist, but hey, I had a lot of fun.

In the bar of the youth center ‘t Beest, I met Jan Florusse. I only knew him by sight and had never exchanged a word with him. “You play the sax, right?”, he asked. “I plan to start a new band with Udo and Frank, you know them. Do you want to join us?” “Of course”, I said, “that sounds amazing!” “Great, I think it’s best if we arrange something soon”, Jan said, pretending to be professional. Jan lived in Wemeldinge and  I was already annoyed I had sold my moped that same morning. “Can you, uh… Do you have a moped?” Jan looked at me surprised. “I wish I did. I’m only fifteen.”

“Really?” I asked. “I thought you were much older, like eighteen or nineteen or something. No, no,” Jan shook his big head of hair. I already felt like an old man at eighteen years old. “Can you come visit me on Tuesday afternoon?” he asked. I nodded. Jan explained exactly where he lived, got up and said he had to do some shopping and wend away. “Bye bye, see you on Tuesday,” he said and left.

With my saxophone case in the middle of my handlebars, I cycled as fast as I could along the Oosterschelde on my way to Wemeldinge that Tuesday afternoon. Jan had explained the way clearly because I arrived right away in front of a building with the words “Zeilmakerij Florusse” written in large letters. I rang the doorbell and  one of the large company doors opened. An older boy looked at my case and said, “Hello, you must be here for Jan? I’m his brother, Guus.” He let me in through a large hall where an enormous boat was standing on a couple of sturdy supports. Guus maneuvered past it, opened a door on the side of the hall and  called out, “Ja-han, the saxophonist is here.” Jan appeared at the top of the stairs, behind the door and  told me to come in. We went to his room where Jan showed me various guitar chords. He was bursting with ideas and  I had never heard such a good guitarist among my friends. I struggled to come up with enjoyable melodies myself and missed the examples from my records. Now I had to come up with something on my own and  it wasn’t easy. I limited myself to the safe bass tones of Jan’s chords and realized I still had a lot to learn.

Jan had arranged for us to practice in the atelier at his home in the sailmaker’s workshop. Every Saturday afternoon, a few of us would take the bus to Wemeldinge to make our instrumental music with eight of us. We named our band Beaux Trytus, a unique spelling for a word with a somewhat less elegant meaning. Botritis is the Latin name for a rotting fungus on strawberries and raspberries; I had learned that during my holiday job. I thought it was a beautiful name for a band and  the boys agreed. The eight boys became five when three of them left to start a new band together. This was an important event for my development as a saxophonist. Our experimental prog rock in the style of King Crimson and Focus became more organized and structured. I felt like I was playing better, took more of a leading role and  was greatly assisted by the genius keyboardist Udo, who regularly wrote some parts for me on paper.

The creativity and drive were immense. So immense, in fact, as young enthusiasts, we often took on more than we could handle, making us interesting only to ourselves. We became quite absorbed in our own world. The concert we gave at the antikerndag in ‘t Beest was the clearest example of this. Jan couldn’t make it that evening and  for the occasion, Udo brought along his cousin so we would perform with two keyboardists. To have quick access to everything, Udo had set up all his instruments – and there were quite a few – on tables at the edge of the stage. It looked like an aquarium! In our perception, the concert was fantastic, but the audience? They only saw legs.

Gradually, I started getting more and more requests to play as a guest musician in various bands. I spent some time in Edge, played many graduation parties with the new wave band Intensive Care (what’s in a name) and  participated in an LP with regional musicians. In the end, I chose to play in Edge for the second time. Edge was under the inspiring leadership of Thijs, my best friend and a magnificent guitarist. I had stopped playing with Beaux Trytus for a while and  since I had my own saxophone and was a night owl, I also left the fanfare behind.

After a night out, Thijs and I would stand and talk until the early hours of the morning at the place where our paths diverged. We were inseparable.

In the music room of the Pedagogical Academy, there was a piano I had taught myself to play a little bit. Therefore, I borrowed a string ensemble from Udo to add more color to the music of Edge. Edge was a beloved band among the audience. This was mainly because we played so many different styles and  vocalist Thea always managed to win over the audience. We played a blend of rock, symphonic, jazz, funk, blues, reggae and  ballads. I could really let loose on my saxophone and  since I often borrowed a synthesizer, I began to enjoy playing keyboards more and more. In 1984, we came up with the idea of releasing a single independently. The day we could pick up the thousand copies at Van Gent en Loos was fantastic. To promote the single, we performed frequently during that time. One day, we played at the Klomppop festival. Diana, whom I already knew a little bit, was there too and  I couldn’t stay away from her. After the festival, we sat together in the back of the band’s bus on our way to a discotheque in Goes. There was something beautiful in the air. In the disco, Diana was being bothered by two guys on the dance floor and  she sought protection from me. We sat down on a quiet bench and looked at each other. Then she wrapped her arms around me and  for the first time, we kissed. I closed my eyes and thought I was dreaming…

From that day on, Diana witnessed all my musical endeavors. She saw how the single flopped and how Edge fell apart. She saw how Thijs and I tried again with a few other guys and  how I ended up in ‘Blubber de bie.’ Blubber de bie was something completely different. This band played cheerful pop rock. Armed with a straw hat, a Hawaiian shirt and  a colorful checkered blazer, I formed the brass section of the band alongside Dirkje, the trumpeter.

The driven singer/guitarist Alex was the leader of Blubber de bie. There were also three backing vocalists, a bassist, a keyboardist and  a drummer. We rehearsed in the middle of the polder and  within a year, the band fell apart again. However, the best was yet to come.

4. Learning Letters To Communicate

The lecture hall was bustling with activity. I sat in the middle of the high rows of tables and chairs that resembled more of a sports bleacher than classroom furniture, surrounded by Diana and various family members. Two professors who reminded me of the teacher from Pink Floyd’s ‘The Wall’ called me down. I shuffled through a sea of knees to the center aisle, recognizing many faces along the way. Gerrit the guitarist, Kees Sorber from the pub, Adrie van Oosten, Uncle Tom, Wim Tielkemeijer, Roel and  Peter. Once downstairs, the professors, now wearing white coats, placed me on a stretcher. They pushed the stretcher through two swing doors and  I found myself in a small room. The larger of the two grabbed a drill, inserted a feather duster into it and  began cleaning my throat. The other pulled a plug, similar to a sink stopper, up from me. I was dreaming. In reality, a tube was being removed from my mouth. It’s a plastic ring placed between the teeth to keep the mouth open. I often coughed uncontrollably and  to get rid of those annoying globs, I had to be suctioned frequently. To make it easier for the nurses, a tube was placed between my teeth.

With the removal of that tube, my mother’s last bit of hope for a speaking Dick was also removed. For the doctors, however, it had been clear from the beginning my ability to speak had been permanently disabled. Encouraged by the highly enthusiastic and passionate rehabilitation doctor, Dr. Terpstra in Goes, they searched for an appropriate communication system. One morning, he entered my room in the ICU with a large gray device under his arm and attached it to the back of my bed. It had various letters and flashing red lights. Its functioning was explained to me and  it was my task to demonstrate what I could do. I just had to use a blinking signal to stop the light at a letter indicated by Diana. Nervously, Diana held the button to transmit my response to the device. The disappointment was immense when it turned out I couldn’t do it. The letters and lights appeared distorted to me and  I always reacted too early or too late. The device was removed from my bed and  everyone left the room as I visibly tired. One illusion shattered.

A few days later, two strangers stood by my bed. “Hello, I’m Harry de Smet from occupational therapy,” said someone with a Flemish accent. “And I’m Ans, a speech therapist,” spoke a somewhat shy lady. I had last received speech therapy ten years ago at the Pedagogical Academy in Middelburg. I wanted to become a teacher and  because I didn’t speak standard Dutch clearly, I received speech lessons. It wasn’t clear to me why I was receiving speech therapy again now. “We heard from Dr. Terpstra the board with the lights wasn’t very successful. We want to try something else with you,” Ans said to me. “The principle is similar to the light board, but now you don’t have to see the letters. I’ll say them out loud for you,” Harry explained. “It’s important you can understand me well.” He grabbed a chair and sat next to Diana and my mother, who had taken their familiar places by now.

“I’ve divided the alphabet into three rows. The first row consists of the letters a-b-c-d-e-f-g-h-i, the second row j-k-I-m-n-o-p-q-r and  the third row s-t-u-v-w-x-y-z. Take a good look at it and let me know when you’re ready,” Harry said calmly. I repeated the rows to myself a few times and quickly discovered a few mnemonic devices. ‘ai’ is an animal, ‘jr’ plays in Dallas and  ‘sz’ is an indication of a company vehicle I’ve driven a few times. I went through the rows again and decided to signal Harry. “Okay,” he said, “are we ready?” I blinked and  Harry continued. “The goal is for you to think of a word and  we’ll decipher it letter by letter. Each time I’ll ask: first row, second row, third row. When you hear the correct row, blink and  I’ll mention the letters in that row. When you hear the correct letter, blink again. Do you understand?” I blinked. “Then think of a word,” Harry said. I didn’t feel like choosing a basic word like ‘aap-noot-mies’ (a Dutch learning phrase), so I wanted to come up with something more serious. The first word that came to mind was ‘Quasar.’ I thought this would be a good word because the ‘q’ and ‘u’ would immediately show my language ability was still intact. I blinked at Harry to indicate he could start. In a calm pace, he said, “first row, second row, third row,” but nothing happened. “Once again,” Harry said. “First row, second row,” and then I blinked and  Harry gave a thumbs-up. He listed the letters from the second row and  when he reached the letter ‘q,’ I blinked again. Harry wrote down the ‘q,’ and without any mistakes, we continued with the other letters. After the ‘r,’ Harry said, “Quasar? Is that the word you want to indicate? I’m not familiar with it, are you?” and he handed the piece of paper with the six letters to Diana. She thought for a moment and  then it clicked. “That’s a band he has a CD of!” she said relieved.

I looked into Harry’s smiling face and  he showered me with pats on the back. “Well done, lad, well done!”

There was a euphoric atmosphere in my room. “That went well,” Harry said. “We can do another word.” This time, I opted for a simpler word. I wanted to indicate ‘glas’ (glass), but whereas Harry stopped after ‘Quasar,’ he continued after the word ‘glas.’ “First row, second row, third row.” Quickly, I thought about how I could extend ‘glas.’ Just in time, I figured it out and turned it into ‘glasses.’ In the same way, ‘bril’ (glasses) became ‘briljant’ (brilliant) and  ‘briljant’ became ‘briljanter’ (more brilliant). Harry asked if I wanted to indicate anything else and  that’s when I made a mistake. I was indicating ‘Marco’ and had already made the letters ‘Mar’ clear. The letter ‘c’ is the third letter of the alphabet and  accidentally, I signaled the third row instead of the first. Quickly, I thought about which letter from the third row I could use. Marxisme, I would indicate ‘marxisme.’ Until this day, it has remained a mystery to everyone why I indicated such a strange word. Harry tapped my chest and said in Flemish, “Let’s not get into politics, little man.” Everyone laughed.

That morning marked a major breakthrough for me. The silence had been broken; they had made me speak again.

5. The House In Kapelle

At BRC, during the first few weeks, I would always take a nap in the afternoon because I couldn’t sit in the wheelchair for long hours yet. That needed to be gradually built up. Alette was in the middle of helping me out of the chair when the sliding door opened a bit and  Ton stuck his head in. “Phone call from ‘s-Heer Arendskerke, Diana on the line.” Alette swiftly wheeled me down the long hallway towards the phone, making those “beep-beep” sounds along the way. In the entrance hall, the phone hung on the wall, with a few headphones next to it. She put one on me, checked if it was positioned correctly and  said, “Dick can hear you well, go ahead and speak.” “I have good news,” Diana said, “this morning we received a letter from the housing association. They have a adapted house for us in Kapelle. I went to see it, it’s located in the Eliwerve district.” A broad grin spread across my face. That was sooner than I had expected. Through Alette, I chatted a bit more with Diana and  it became clear how difficult it was for her to say goodbye to her hometown. “I’ll still come on Saturday, then we can talk about it some more,” she said. “Do you want to say anything else?” I gestured with the letters ‘d’ and ‘k,’ and Diana immediately understood what I meant, responding with a “mwah” through the headphones. “Big kiss back.” When Alette placed the receiver back on the phone, she did a little happy dance next to my wheelchair; she was so happy for us. Everyone was full of praise for the house. Even the occupational therapy department wrote a report using words like perfect and ideal.

During a weekend at home to celebrate my birthday, we decided Diana would call the housing association on Monday to let them know we would accept the house. After Diana tackled the necessary bureaucratic hurdles, in the summer of 1992, family, friends and  acquaintances worked up a sweat renovating the house. While I moved from BRC to Ter Bosch, Diana moved our belongings from ‘s-Heer Arendskerke to Kapelle. The move had an important side effect. It became clear to me once and for all Diana was serious about taking care of me. I always had the anxious feeling she would leave me and end our relationship. In the hospital, I had once asked her if she could guarantee she would stay with me. A ridiculous question, of course, no one can guarantee that. “Don’t worry,” she said, “the chance of me falling in love with someone else has actually become smaller rather than larger.”

“Seventeen meters, the whole house is seventeen meters long!” my father shouts from the storage room. He walks into the room and puts the tape measure in the closet. It seems bigger than it is. We live in an ordinary row house, but instead of stepping into the backyard from the kitchen like the neighbors, you enter our house through the extension’s hallway. My father is pleased to see we are perfectly content with our living space. The spacious living room, the simple kitchen, the stepless hallway, the large bedroom with a big window overlooking the garden and  the wall with sliding doors that conceals the shower and storage room. For years, these rooms have provided an excellent foundation for Diana to take care of me optimally.

In the bedroom, there’s a painting Wies, my mentor at BRC, gave me as a farewell gift. It’s a fitting present. Thalie, Jeroen, Gertie, Merel, Janine, all the children from my pavilion, were allowed to paint a little with their fingers. The image doesn’t represent anything, but I see a big fly trying to get into a tent. Wies had told them not to mix the colors. As a result, the colors appear fresh and turn out to match the sunny yellow of our bedroom. Flotsam and Jetsam are two fairy-like clay heads that hang above the door, just like the grinning figures at the drugstore. They hold the cornice of the sliding doors in the bedroom with their hands. They were made by Brenda, a friend of ours and  I named them that way because I believe fairy-like characters shouldn’t have ordinary names. Hence, Flotsam and Jetsam, the title of a song by Peter Gabriel.

In the past years, there have been regular changes to the house. Above my bed, my brother and his father-in-law mounted a substantial rail on the ceiling, with a TV attached can be rotated and tilted in any desired position. The TV is controlled by a timer, allowing me to watch late into the night if I want to.

I place great value on having a warm room. Thermostatic valves have been installed on all the central heating radiators, allowing the temperature to be individually regulated in each room.

The backyard is completely tiled and  a gigantic pavement has been made on the side of our house, where we can always park the car close to home. A neighbor from ‘s-Heer Arendskerke, whose wife comes to give my feet pedicures every four weeks, made calls far and wide to find a suitable car for us. In the end, he managed to obtain a splendid specimen in Rotterdam. The clumsy large van we had bought as a temporary solution and  which had gotten stuck under a viaduct once, could be sold. It is now driving somewhere in Macedonia with street children.

I am only familiar with the upstairs of our house through a few photos and a video. Diana has her own shower and a separate room for tanning. Our old double bed serves as a guest bed and  my LP records are stored in storage boxes while Diana takes care of her administrative tasks there. I feel little connection to the upstairs. I lived in an apartment for many years and  when I stare at the ceiling now, I occasionally feel like I have upstairs neighbors.

Our house is in an ideal location. Eliwerve is a newly built neighborhood in Kapelle. We live in the first houses that were built there, close to the town center. This is very convenient for Diana because Kapelle has good infrastructure and  you can buy everything there, from a postage stamp to a drum set. Whether you want to go swimming or have Chinese food, it’s just a hundred meters from the garden door. Also, the many asphalt roads in Eliwerve are very nice. Most people wouldn’t think much of it, but for someone in a wheelchair, the road surface is crucial.

If possible, I avoid small polder dykes, country roads, or back routes. The jolting on the notorious Belgian Boudewijnweg is nothing compared to the shaking I sometimes have to endure. Clattering teeth, with luck, my tongue or lip not caught in between, eyes giving the impression I’m sailing in the middle of a wild sea and  a headrest dealing blows to my neck. Give me an asphalt road instead. It’s more pleasant for myself and the person pushing me.

There have been two incidents closely related to this, incidents that those involved may never forget. On a scorching hot day in ’95, Diana, my mother and  I went to the city to buy a few things. The city center of Goes is a nightmare for me to navigate with all its decorative paving. We had just bought some CDs and were on our way to a cool terrace because we were sweating profusely. For the third time, my mother complained  the wheelchair was so heavy and I was lying more than sitting. Initially, we thought there was something wrong with the tilting mechanism, but then Diana noticed it: my backrest had broken off! My mother and I found a spot in the shade and  in the meantime, Diana brought the car to the nearest parking lot because it was parked all the way on the other side of the city. As I waited against a wall, I became more and more anxious. I could already see the ambulance coming. Once Diana returned, I was brought to the car as best as possible. With my mother panting and groaning behind me, we made it home, where the comforting bed was waiting for me. In the afternoon, I watched the Tour de France and wondered what would have happened if my mother hadn’t been there behind me.

A year later, I got even more scared and had terrible thoughts for months afterward. On a Sunday, Diana and I were going to visit my parents, who also live in Eliwerve. We decided to take a different route and make a nice walk out of it. Along the way, we ran into a few acquaintances and stopped to chat for a while. After about ten minutes, we continued our walk and ended up on an old access road to Kapelle. On one side was Eliwerve and  on the other side was an orchard with a deep dry ditch beside it. At a certain moment, I saw a car grille coming towards me and  to make matters worse, the driver leaned down to fiddle with his radio or something. The car was speeding toward us. My heart was pounding in my throat and  there was no room to move aside. The only thing Diana could do was shout loudly in the hope the man in the car would hear her. I don’t know if it helped, but just in time, the man straightened up, saw us and  narrowly avoided us. When we arrived at my parents’ home, I calmed down a bit and said I never, ever wanted to walk on that road again. I had stared death in the face.

As I survey my entire living situation, a major dilemma arises. As helpless as I am, our house offers so much protection and  as protective as our house is, I long to go outside.