11. ‘Music, all I hear is music’

In the early 1970’s my mother worked in a shop that sold electrical appliances. She had purchased a large stereo cabinet there. Such a thing was the latest of the latest back then. A radio was built into a sideboard-like cabinet and behind a sizable flap there was a record player. In the middle of the turntable, a pin could be inserted, allowing up to twenty LPs to be played in a row. The sides of the cabinet housed two powerful speakers. It was all very luxurious and my father gave me their old mono suitcase record player. I was very happy with it, my first little turntable.

At that time my mother would regularly bring home singles from her work. The Poppys, The Sweet, The Osmonds, Middle of the Road. I played them all incessantly. Arjo also received a turntable from his parents and when we weren’t playing in the fields, we were imitating our idols in my room or his. Arjo would make strange jumps on the bed with a tennis racket as a guitar and I would drum on a chair with a salad fork. Our favorite song was ‘Wig Wam Bam’ by The Sweet. We would stick pieces of white adhesive tape on our faces and wear Indian headdresses to fully immerse ourselves in the song. I had about fifty records and a few LPs. For my birthday, I once received an LP by Middle of the Road. I was as proud as a peacock and wanted to let Carlo, a friend from the campground, hear it. At that time, we were driving a DAF, so there wasn’t much storage space. I had safely placed the suitcase record player between my feet and the LP on the rear shelf. The sun was shining brightly, perfect camping weather. When we arrived at the caravan, I got out, placed the suitcase record player in the awning and walked back to the DAF to get the LP. I almost burned my fingers on the black cover. The LP was untouchable. “What would it look like inside?” I wondered. With a tea towel wrapped around my hands I took the warm object from the rear shelf and assessed the damage. A warped record emerged from the cover, resembling a deep dish from which you could eat soup if it didn’t have a hole in the middle. In the caravan I tried to play the LP but the needle slipped right off. Carlo never heard the LP, only saw it. At home heavy books were placed on the LP for days, but the record was ruined forever.

With the arrival of the saxophone I lost interest in the records. I was mainly focused on learning to play the instrument. That was until the day Vincent took me to a record store in Goes. It was sometime in February 1977. Vincent was a classmate of mine and he had the same school agenda as me. There was a photo of Genesis in it and he asked if I knew the band. His brother had a few LPs of theirs and they were magnificent according to Vincent. I had never heard of them and Vincent suggested skipping class for an hour to go and listen at a record store. It was supposed to be amazing I had to hear it! We cycled to the city center of Goes and entered the first record store we came across. Vincent searched through a bin under the letter G, pulled out an LP and said “Got it, Nursery Cryme”. He showed me the cover. On a yellow-green lawn a young girl was staring blankly ahead. She raised a croquet mallet in the air. Various heads were scattered on the lawn, very mysterious. Vincent walked to the counter and made a face as if he was going to buy the LP.

“Can I listen to this?” he asked the man behind the counter. The LP was put on and the man pointed to the headphones which consisted of a left and a right side you, like the receiver of a regular telephone, had to hold against your ear. Vincent took the right side and I took the left. We only had half stereo, but with the beautiful music of the first song, The Musical Box, it didn’t matter. “Play me my song. Here it comes again,” someone with a very haunting voice sang and Vincent handed me his part of the headphones. “Now comes a beautiful part!” For the next few minutes I became completely enthralled by the music. What a fantastic piece! Superb! Unparalleled! I had never heard anything so beautiful. Goodbye The Sweet. Goodbye The Poppys. This was real music! “Well?” Vincent asked. I vigorously nodded yes. I gave him back his headphones and we continued listening. The song ended with an even more beautiful section, dominated by organ sounds and a brilliant guitar played at the end. There was subtle drumming and highly emotional singing. “Why don’t you touch me, touch me, touch me. Touch me now, now, now, now, now…” It gave me goosebumps. It tickled in my stomach. I was thoroughly enjoying it. Vincent told me all the songs were just as good. We barely listened to the second song because I knew for sure the LP would soon be on my suitcase record player. I looked at the price tag on the cover. 16.90 guilders. I could get pretty far with the dimes from my piggy bank. We told the man behind the counter we would buy the LP soon and left the store. In the afternoon I carefully counted out 169 dimes from my piggy bank and exchanged 150 of them with my mother. The next day, it was Saturday I went to get the LP. In my haste, I had forgotten my gloves and because it was freezing, I could barely get the remaining nineteen dimes out of my pocket.

When I got home again I first warmed up my completely frozen hands and spent the whole afternoon listening to the LP. I had become a lifelong symphonic rock fan.

Underdog was a small cozy record store on the outskirts of the city center of Goes. There were a few other shops like it. It’s a shame nowadays such stores have been pushed out by large chains and franchises. Everything has become standardized and you see the same facades in every city. I spent many hours on the bench in Underdog.

Huub was a new classmate of mine and he had written down a lot of unfamiliar names on his pencil case. He was a member of the record library and knew a lot of bands. Yes, Pink Floyd, Camel, Caravan, Barclay James Harvest, Kansas, Jethro Tull, Kayak, Focus. Genesis was also proudly displayed on his pencil case. For years I listened to looked at and bought LPs with Huub and Vincent at Underdog. During that time I also spent a lot of time with the Lemmens brothers. They lived in a large house in Wilhelminadorp, Mark and Pascal. Often friends of their older brothers would come over and coincidentally they also liked the same music as me. I discovered many new LPs.

Around 1979 I went to a concert for the first time. Like every village, Wilhelminadorp had its group of teenagers. Every evening around half past six I would ride my moped to the field. This was a sports field behind Wilhelminadorp where all the teenagers from the village would gather to talk about everything and nothing. Nina Hagen and Kayak were playing in Oost-Souburg and we wanted to go. With about ten mopeds we rode to the sports hall in Oost-Souburg on a Saturday night. Nina Hagen opened the evening. I was greatly disappointed. I had a tape with her music and I thought it was fantastic. Probably she had just released a new LP because I didn’t recognize any of the songs.

After that it was Kayak’s turn. I thought it was fantastic! They had a new singer, Edward Reekers, someone with a golden voice. From Boos (everyone in Wilhelminadorp had a nickname) I had recorded their latest LP, ‘Phantom of the Night.’ I knew all the songs by heart and went completely wild. Especially when the drummer stood up and started singing the oldie ‘Lyrics.’ I loved it and when the last notes of ‘Phantom of the Night’ faded away, I knew for sure I would go to many more concerts.

12. Signals from the Mind

Due to the brain infarction normal signals no longer reach my muscles, for example to walk or press the keys of my saxophone. Instead my muscles receive only uncontrollable, disrupted signals that make me tremble and shake. I experience strange twitches and cramps. These are called spasms and luckily they usually don’t cause me pain, but they are troublesome. In fact they are very troublesome. It can be compared to vigorously shaking a bottle of beer. It churns, it fizzes, it bubbles, it wants to come out and it takes a while for everything to calm down again. I take medication to reduce excessive muscle tension, but there’s nothing else that can be done. I have no control over it. The signals leaving my brain are disoriented and reach various muscles simultaneously. Sometimes I shake quite intensely. I can go for hours without any problems and then suddenly experience it five times within an hour. Fortunately my heart, lungs and all the organs are controlled by another part of the nervous system, or else…

Every tremor is caused by a stimulus. For example, it can occur when I’m comfortably lying in bed and someone removes the duvet. The cold makes me spasm. If someone with cold hands touches me it becomes even worse. I experience other stimuli from itching, certain movements, pain, coughing, yawning, warmth, when Juul or Floyd walk over me, fever and intense emotions. When Patrick Kluivert scored the winning goal in the 1995 UEFA Champions League final between Ajax and AC Milan, not only did the entire stadium erupt, but I couldn’t stay still either. My chair rattled vigorously and each of the penguins on TV fell over. I could hardly watch the rest of the match; I was completely tense. Even when I hear a beautiful piece of music, I start spasming intensively. Thrilling movies, sudden frights, funny comedians, bad news, or the feeling of “I need to say something because something is not right”—all these make me spasm. Most of the stimuli come from a muscle in my neck. That muscle serves little purpose and causes me a lot of trouble. Even a slight backward tilt of my neck compared to my back triggers a spasm. We’re talking about millimeters here. It’s crucial the headrest of my wheelchair is properly adjusted. When I have to cough or when I put on a sweater I always hope the headrest isn’t tilted too far back. Otherwise the muscle will cause a massive spasm. I feel it throughout my whole body. It lasts a second and then all hell breaks loose. In that one second I know what’s about to happen. I can’t suppress it. If only the headrest were positioned a bit forward. Additionally that muscle causes my head to tilt to the right with every spasm. I have no head balance and it’s nice when my head is centered on my body just like everyone else. My head is repositioned to the correct position numerous times a day; it’s almost automatic. I prefer it to be done with a bit of force as otherwise my head often jerks back out of alignment. And there’s a high chance another spasm will occur.

Believe it or not, the spasm offers me two advantages. With a little effort I can induce a spasm myself. I have to focus on something that bothers me until my head assumes a different position. That triggers a spasm and if I’m lucky my bed starts shaking. This way I can call for Diana if for example I’m feeling too hot in bed or if my feet are hurting. I can also get attention from my chair using the same method. Diana knows me inside out and sometimes senses something is wrong just from a sniffle. However during the night I have to resort to shaking the bed. I don’t do it for pleasure; there has to be a genuine issue. When I hear Diana getting out of bed in response I feel immense relief. That’s the first advantage—the call function. The second advantage is more physical in nature. The spasms ensure my bones, joints and muscles remain in good condition. I used to be very flexible and I want to keep it that way. Twice a week, Pol Smaneel, my physiotherapist, visits to mobilize and move me. This keeps me supple and prevents deformities (contractures) and limitations in movement. It also makes it easier for me to get dressed. If I hadn’t experienced spasms the circulation in my joints would have been so poor I would have faced significant problems. I see that as a tremendous advantage.

In the hospital in Goes the spasms were actually completely suppressed by the Valium. The struggle to put me in my chair, which I described a few chapters ago, was accompanied by almost no spasms. Once I was transferred to BRC I started experiencing more and more spasms and I hoped there would be a doctor somewhere who could help me get rid of them. It took months before I could accept the spasms. Now I know it is what it is and with the excellent care and support from everyone around me I really have nothing to complain about.

13. Re-evaluation

The number of times I’ve seen bands perform live over the years probably exceeds five hundred. From large international stadium acts like Genesis, Pink Floyd and The Rolling Stones to regional amateurs. Festivals like Torhout-Werchter and Pinkpop. I traveled to Amsterdam, Rotterdam, Kerkrade and Leiden. It was a part of my life.

At the end of the 1970s and the beginning of the 1980s, punk emerged and symphonic rock was seen as something reprehensible and ridiculous. Those who liked symphonic rock had to be ashamed. Many symphonic rock bands departed from the progressive path of long, elaborate songs to create more accessible commercial music. Genesis released the incredibly disappointing album “Abacab,” and there were other examples as well. I sought refuge in the more jazz-rock oriented groups like Mahavishnu Orchestra, Brand X, Jeff Beck and Jean Luc Ponty.

In Goes, there was a shop called “De Waterput” that sold clothing and LPs. It was run by Engel and Steve and it was always very cozy there. I often visited, especially after Underdog went bankrupt. I bought all my LPs there, many of which were unfamiliar to me. I was a bit in search of something.

Until suddenly in 1983, a new group emerged with a fantastic LP. All symphonic rock fans were awakened. It was Marillion with the fabulous album “Script for a Jester’s Tear.” Some called it a revival, others referred to it as regressive rock. For me, “Script” was a reevaluation of symphonic rock. The LP had a beautiful cover with a lot of symbolism. Marillion had a very charismatic singer in Fish. A towering frontman whose voice and lyrics were sharp, biting and venomous. The LP contained six songs, each one a gem. I particularly loved Forgotten Sons. I played that song endlessly. It dealt with the Falklands War, which was very topical at the time. In an impressive lyric, Fish lashed out at the British government: “Minister, minister, care for your children, order them not into damnation to eliminate those who would trespass against you.” I still consider it the best song lyric ever written. In the wake of Marillion, new bands sprouted up like mushrooms: IQ, Pendragon, Pallas, Twelfth Night and later It Bites and Jadis. Symphonic rock became interesting again and I became more passionate about it.

Diana and I once went to a concert of IQ and Pallas in Amsterdam with five friends. We left early in the morning from Goes and arrived in the capital around eleven o’clock. We parked the cars behind the Rijksmuseum without any problems and wandered through the city, Leidseplein, Dam Square, Kalverstraat. I felt at home there. It had been quite different five years earlier. I had visited Amsterdam for the first time on a school trip. It was during the time of the squatting riots and the week John Lennon was shot. For a whole week I felt like something could happen to me at any moment. Five years later, I walked along the canals with the feeling I had known the city for years.

The concert was held at Paradiso, the rock temple of the Netherlands. There were two balconies on either side of the hall. We stood on the right balcony, waiting for what would be one of the most memorable concerts I have ever experienced. It was fantastic! IQ already blew the roof off the place and Pallas played like there was no tomorrow. The six hundred attendees created an amazing atmosphere and the organization (Sym-info) later wrote on the cover of their monthly magazine: “Chills down your spine.” Sym-info was one of the many music magazines I read. I wanted to stay informed about everything. Another magazine I often read at the time was Music Maker. In addition to interviews and album reviews, it featured articles about the latest instruments. Almost every musician I knew read it.

After the concert, from the balcony, I saw a few members of IQ and Pallas mingling with the departing audience for a chat. I ran downstairs because I wanted to be part of it. In the now almost empty hall, I talked with them for over fifteen minutes. We discussed Pallas, the concert and of course Ligeia Lie. On the way back, I frequently dozed off against the fogged-up side window of Ben’s car. I dreamt of playing with Ligeia Lie in Paradiso. Together with Pallas.

In 1989, I bought my first CD player. In the years before, I always had a very poor sound system. I fooled myself by claiming it was about the music and not the sound. On a Thursday evening, Diana and I went out to buy a new stereo because I was convinced I needed a good system. Gerrit and Ben had huge speakers at home and when they turned up the volume… That same evening, I bought three CDs to inaugurate the system. Even when CD stores were still called record stores, I found it difficult to choose what to buy. With all those CDs in front of me, it was even harder. Rows of cases. However, I had no trouble with one CD. I took it out of the bin and placed it on top of the stack of CDs I might potentially buy. On a yellow-green lawn stood a young girl staring into space. She raised a croquet mallet in the air. There were heads scattered on the lawn. I didn’t need to look at the title anymore. I knew it already. “Nursery Cryme”.

During a vacation in London, it was the last time I rummaged through the CD bins with my fingers. I bought a CD by Ozric Tentacles. I didn’t listen to it much anymore. Throughout the entire period I was in the hospital, I only listened to cassette tapes. I had about fifty CDs at the time, but I wasn’t interested in them. Diana often brought me some tapes and I also received some from my friends, but lying down and listening comfortably… no way.

At BRC, Diana gave me a gift. She had bought a portable CD player with two small speakers. She brought a few CDs from home. I called myself a symphonic rocker again. I started enjoying the music and found pleasure in it once more.

A week after I received the CD player, Diana brought the new issue of Sym-info and read something from it. There was a catalog of Sym-info-music on the center spread, a mail-order list where you could order CDs. The order form was already included. We filled out the form and ordered two CDs. Many more would follow.

14. The Baguette and the Herring

When Diana and I didn’t feel like cooking in the past, we made a baguette A.C. Diana worked as a substitute at the activity center at that time and had learned how to prepare this quick and unhealthy snack. We split a baguette into two equal halves and Diana started making deep cuts every two centimeters. Meanwhile, I prepared a creamy spread using two tubs of cream cheese, a generous knob of margarine and a few squeezed garlic cloves. Once I finished making the spread, I filled the cuts generously with it. The messier, the better. Diana took out a packet of bacon slices from the refrigerator and placed one slice in each cut. We wrapped the whole thing in aluminum foil and put it in the oven. While the cream cheese soaked into the baguette, I made our favorite soup… oxtail soup (from a packet with some extra vermicelli). The soup always came with a complimentary packet of croutons. I always called them Chip-munks, my favorite cartoon series about the three singing chipmunks. I loved them, both the Chipmunks and the croutons. When our soup bowls were empty, we went to the kitchen. The baguettes were ready. We took them out of the oven and refilled our soup bowls. I sat cross-legged in front of the TV and opened the silver package. I placed the foil on my legs because the baguette was quite messy. I broke off the first piece and started eating the delicacy. Every time I finished a piece, I licked my fingers and took a few spoonfuls of soup. Yum, yum, yum.

I have never been a big food lover, but the baguette A.C. couldn’t be surpassed by any fancy restaurant. A beer, a pan of spaghetti, a sandwich with sausage, an apple, or a Greek salad, what I miss the most is the baguette A.C. Not so much the food itself, but the whole atmosphere surrounding it. Making it, the Chip-munks, cleaning up the foil with a piece of baguette afterwards, the dripping, the soup. In the years that followed, I never saw Diana make a baguette A.C. again. I think it was out of solidarity. The baguette A.C. was something that belonged to both of us. It’s like the red blouse she wore on the night of my stroke in the ambulance. She never wears it anymore either.

Due to my stroke, there is a great tension in my jaws and I can only swallow reflexively. Eating has become impossible. In the ICU, I had a feeding tube in my nose. It extended into my duodenum, where it provided me with a feeling of satiety through drip-feed nutrition. The tube was taped with a plaster, quite an unsightly sight. Next to my bed, there was a stand that held a bag of IV fluid and a bottle of enteral nutrition. Thanks to the enteral nutrition, which contained all the essential nutrients (carbohydrates, proteins, sugars, etc.), I never felt hungry from the beginning. It was a miraculous substance. In the Neurology department, a surgeon created an artificial opening in my abdomen. About ten centimeters above my navel, a tube emerged from my belly, to which the bottle of enteral nutrition could be attached. A device ensured the right amount of drops. I found it remarkable people around me had more difficulty with the fact I couldn’t eat than I did. Everyone wanted to make me taste something, feel something in my mouth, perceive something. Ans had started giving me spoonfuls of custard pudding and soon I was drinking milkshakes from a spout cup, regularly eating ice cream and even trying cola and coffee. I felt 28 years younger.

At BRC, I used to get a small bowl of yogurt with a generous splash of Roosvicee every day. After a few weeks, they came up with the idea of giving me a mashed-up mixture every evening. You see, an ice cream or a spoonful of yogurt goes down easily, but a mashed portion of endive or peas only triggers coughing reflexes. And when I had to cough, it was a strong cough. The splatters flew around.

Fortunately, I always gave a warning so everyone could take cover. It often resulted in amusing scenes. I will never forget the bewildered face of Jeroentje Treur after I had sprayed his face full of endive.

There was also the time when I received beets in my room…

Carolien, the speech therapist at BRC, came to visit me one morning and held a red/yellow apple in front of me. It immediately reminded me of the many apples I had handled at the experimental station in Wilhelminadorp during some sorting process. “Do you like apples?” Carolien asked. I was startled. I blinked, but thought of Snow White. “Okay, then you’re going to bite into this apple later,” she said. She cut a piece of the apple, peeled it and wrapped it in gauze. She held the ends of the gauze firmly and brought the package between my lips. “Open your mouth a little bit,” she said. The gauze tickled my lips and I spontaneously opened my mouth. Carolien quickly placed the gauze with the piece of apple between my teeth and I immediately closed my mouth. I heard the crunch of the apple piece and tried to chew. I got some juice in my mouth and after a minute, Carolien asked if she could remove the gauze. She showed me the piece of apple and proudly said, “Those are your teeth,” pointing at the imprints.

A few days later, Carolien entered my room with a cheerful tone and said, “Thursday is candy day.” She had a plastic bag filled with tasty treats. Caramels, licorice, truffles and various other soft candies. “I think we can put these in gauze,” she said, placing the bag on a shelf in my bedroom. She informed everyone in my pavilion on how to let me enjoy the candy. However, the bag quickly emptied as everyone knew where to find it. I didn’t mind that much because I was afraid of getting cavities in my teeth. It was a well-intentioned gesture, but eventually, I gave up on all the extras. It went too far anyway. I received chips in gauze from someone who didn’t quite understand, ate spaghetti and apple pie, drank pea soup and when someone had a birthday, I also got a pastry.

Only once did I eat a bowl of yogurt functionally. My feeding tube was clogged and the infusion pump alarm kept beeping. Dorien and I went to the hospital that afternoon and we were told to come back the next day. It was nothing serious and I would get a new feeding tube the next day. A day without food would be possible, but it was necessary for me to take my medication. Normally, it was also given through the feeding tube. In the evening, I received a bowl of yogurt with my finely ground medication. I couldn’t taste the difference. The next morning, Wies and I went back to the hospital. We checked in at the reception and a sturdy nurse said, “Dr. Stassen is still in a consultation and can only see you around three o’clock.” Wies looked at her watch, told me it was only half past eleven and asked if I wanted to wait that long or if I wanted to go back to BRC for a while. I didn’t feel like going back and forth in taxis and said I wanted to stay. Wies informed the sturdy nurse we were willing to wait and we were directed to a small room. I was placed on a bed and the long wait began. Wies asked me if I had any idea what to expect. I could hardly remember how the feeding tube was inserted back then. I had no clue what Dr. Stassen was going to do and Wies explained in broad strokes what would happen. We passed the time with a few crossword puzzles and I asked regularly for the time.

Exactly at three o’clock, someone came to fetch us and I was wheeled into the treatment room. Amidst a room full of equipment, there were four nurses standing and Dr. Stassen sitting, reading through a stack of papers. He came up to me and introduced himself. Meanwhile, a nurse pricked my finger with a sharp needle. “That’s for you’re memory,” she said. “Later, you’ll receive a medication through this that will make you forget everything about this procedure. We’ll put you in a daze.” Dr. Stassen inspected my feeding tube and grumbled. “Hasn’t anyone ever told you how to clean it properly? The old sutures are still there,” he said irritably, “ridiculous!” Wies was quite annoyed no one had informed her about it. Dr. Stassen explained to Wies how she could clean the tube in the future and went to a device. A nurse inserted a tube into my mouth. Dr. Stassen held a long black tube and handed the end to a nurse. “You still remember this thing, right?” he asked. “We’re going to look into your stomach and replace your feeding tube at the same time.” The nurse inserted the tube through the tube in my mouth and I was asked to swallow. I had never seen such a thick piece of licorice! Whether I wanted to or not, I had to swallow tremendously, or rather, I felt like gagging. When the tube was halfway in (the official name is gastroscopy), the tube slipped out of my mouth. Panic ensued. “My scope, my scope!” Dr. Stassen exclaimed, “That thing costs forty grand!” I did my best to keep my mouth as wide open as possible. Fortunately, a nurse quickly repositioned the tube, or I would have bitten the scope in half. I don’t remember the rest of the procedure because the memory jab started working.

The first thing I saw again was a nurse pulling down my sweater. It felt very strange. I felt like they had just started, but they were already done. It was like with a video recorder, when one recording transitions into another. Dr. Stassen came up to me and bent down. “Excellent, you did great,” he said sympathetically. I was taken to a recovery room to regain my strength because I felt like I had run a marathon. Wies explained the significant change Dr. Stassen had made. He had repositioned the tube of the feeding tube, which normally entered my duodenum through my stomach, so that it ended in my stomach. Now, I could receive tube feeding in whole portions instead of drop by drop. The pole that always stood next to me with the infusion pump could be put away in the storage room. That evening, I received my nutrition in the new way for the first time at BRC. Dorien picked up the piece of tubing on my stomach and screwed the sleeve of a large syringe onto it. She filled the syringe with nutrition, opened the valve of the tube and I saw the tube feeding enter my stomach. Although I couldn’t taste the nutrition, it suited me just fine. Mentally speaking, that is.

The next day, my new feeding tube and the scope, which I had almost bitten in half, were the talk of the day at BRC. Proudly, I showed the tube to everyone, although from the outside it didn’t look much different from my first one. What no one could see at that time was I was getting fatter and fatter. Probably, I was receiving a bit more nutrition than before and when I went to Ter Bosch, I received even more. I also started receiving fiber-rich tube feeding instead of standard nutrition. By estimation, I weighed around 85 kilograms at that time, while I had always weighed between 62-65 kilograms. By the way, I think I weighed around 50 kilograms in the first months in the hospital. Eventually, I was at risk of becoming a chubby blob with a double chin and Diana put me on a “diet”. I received 400 cc less per day. Within a few months, I looked just like before. The tube feeding also kept my skin incredibly strong. I felt perfectly healthy and was convinced nobody in the world ate healthier than me, even though I couldn’t taste a thing.

To prevent the tube from getting blocked again, I went to the Oosterschelde Hospital every seven months to have the tube replaced. I did that for two years and every time they used the scope, I felt it was one time too many. It came to an end when Diana took off my sweater one time. She loosened my upper belt and routine-ly pulled my sweater up. Then she heard something fall to the ground and picked it up. She let out a gasp of astonishment, “Dirks, your feeding tube!” Between her thumb and index finger, she twirled the broken tube of my feeding tube. “Didn’t you feel anything?” she asked, looking at the bloody end where my tube had snapped. I hadn’t felt anything. It seemed to me that it had just happened recently. Something had to be done about it, because otherwise, the hole in my stomach would close up in no time. It was one o’clock in the morning and our regular doctor, Dr. Xang, was not on duty. Diana had called a substitute doctor and meanwhile, laid me down on the bed. The unfamiliar doctor awkwardly examined my stomach and inserted a urinary catheter into the hole. It was ready in case anything went wrong and now it came in handy.

When the doctor left, Diana turned off the light with a relieved heart and I lay down, pondering how this could have happened. With the urinary catheter as a temporary solution, I managed to get through the day. I had come to understand why the tube had broken. My stomach acid had made the internal part fragile and a fracture had occurred right at the transition between the inside and outside.

At the Oosterschelde Hospital, they had a first for me. I would be the first person to have a new type of feeding system, the mic-key button. The scope would no longer be necessary. Diana could change the mic-key button herself. It had an internal balloon that could be filled with water from the outside, ensuring the button stayed in place. The syringe’s barrel could be attached to the button with a tube. In terms of feeding, nothing had really changed, but Diana being able to change the button herself was a significant improvement.

Every week, Diana removes the button from my stomach to clean it in a soapy solution. It feels like someone is poking hard into my stomach with their finger, but it doesn’t actually hurt. The button is ideal. It has been over two years since the scope last went inside me. I receive my nutrition five times a day and in between, I take a good sip of water. Diana, Priscilla and my mother come at regular intervals with a tray full of small pitchers. When it’s time for feeding, Floyd and Juul are there in a flash, clumsily getting in the way in hopes of getting the last bit from the pitcher. The beggars.

After Diana prepares her own meal, she always comes to show it to me. I requested that. I’m afraid I would otherwise become detached from everything related to food.

Occasionally, I even go to a restaurant, but instead of feeling jealous, as one might expect, I only feel boredom.

Every now and then, I still have an ice cream or a cup of yogurt. Diana will never forget the time she wanted to pamper me with a filled gauze. The gauze didn’t contain truffle or a piece of apple; no, it contained a piece of herring. I had a bad breath for days. Although I didn’t mind it myself. Since birth, I’ve never been able to smell anything.

15. Thresholds

There are two significant imaginary thresholds around my chair. The outer one is the threshold of social contact. I sit in the middle, along with a few people who have crossed the threshold while the majority of society stands on the other side. Wherever I go, I always feel the eyes on me. Over the years I have grown accustomed to it, I even find it logical, but in the beginning, I found it very difficult. I still don’t feel very comfortable when Diana and I go out, but as I have written before, I enjoy being outside.

Once a year, our village holds Kapelle Day. The organizing committee always goes all out for it. There are hundreds of stalls in the village center. There are terraces and bands. There is a fair and a puppet show. You can bungee jump, there are flea markets and various other activities. I always want to go and have a look. Around noon, Diana and I squeeze through the bustling crowd. I see people thinking, “Wow, look at that, terrible and that girl, how awful!” I never truly get used to it, especially when there is a continuous flow of people and repeated encounters.

But there are also moments when I couldn’t care less. Like the time when I went to the zoo in Rotterdam with Diana, my parents, Marco and Silvia. Somehow, I felt solidarity with the monkeys in their cages. I didn’t feel like I was the only one being watched and thought, “So what.” I had learned that from the monkeys. Throughout the day, I didn’t care much if people looked at me. Sometimes, I am able to shut myself off from everything and everyone; it’s the great advantage of someone with locked-in syndrome. I live in Holland, where it is customary to celebrate birthdays with a large circle of guests. I have never heard anyone say they looked forward to it. It’s always a loud buzz. Everyone talks over each other and I don’t understand a thing. So I go to what I call “the hall.” This comes from a line of lyrics by the Swiss band Clepsydra: “I am in a hall, down somewhere in my mind.” The hall is my contemplation room. I close all the windows and doors and shut myself in with my thoughts until someone knocks on the door and says, “Do you want to say something, Dick?”

In the past, I easily connected with anyone and everyone. I was always quick to strike up a conversation and had a large, diverse circle of acquaintances. That’s quite different now. Nowadays, I only have contact with a small number of people and that’s why I appreciate it even more when people step over the threshold to seek contact with me. Like at Priscilla and Peter’s wedding. There was Karin, a friend of Priscilla’s. She spent most of the day with us. Early in the afternoon, all the guests gathered in the backyard of Peter’s parents’ house. Karin introduced herself to me and later asked if she could ride with us to the town hall and a venue in Wemeldinge, where the rest of the day would take place. In the evening, my parents also joined the celebration and since my father would drive back, Diana could have a drink. It turned into a wild, enjoyable evening and Karin even took me to the dance floor. The threshold of social contact… luckily there are people like Karin who dare to step over it easily.

On the other hand, there are people who, upon seeing my wheelchair, immediately assume I have intellectual disabilities. “Can he hear me? Can he see me? Does he understand us?” they anxiously ask Diana. Oh well, I understand. What bothers me more is when I am completely ignored. At JB’s cremation, I happened to be the first in line to offer condolences as part of the family. It turned out to be a bad move. About thirty people simply skipped me and started offering condolences to Diana. Later, I discussed this with Marco. He was getting married and to prevent people from skipping me again during the reception, I wouldn’t be placed at the beginning of the line. I ended up being placed ninth, with my father on one side and Diana on the other. It worked. Almost everyone congratulated me. Mind you, almost everyone. Some people just went looking for a seat after shaking hands with eight people. I think there will always be people who are too afraid to approach me. We’re talking about a thick high wall here. To them, I’m an outcast or, as Peter Gabriel sings on one of his solo albums, “No, you’re not one of us.”

In that regard, the person who worked as a nurse in the lab at Oosterschelde Hospital, where Diana and I went one Friday afternoon, deserves an award for the dumbest remarks of the year. The entire lab already looked deserted around quarter to five. We were attended to immediately. Diana pushed me into the booth where we both had to be pricked. A nurse followed and studied our papers. “Has your husband already been here this morning?” she asked Diana. “He said, ‘My wife will come this afternoon’.” She drew blood from both of us and then made such an thoughtless remark. “What did you think? I’ll come along with him so I can combine it nicely?” Diana just said, “Yes.”

The threshold of communication is the second threshold that surrounds my chair. Technically, this threshold is part of social contact, but I still see it as two separate thresholds. It is possible to have contact with me without communicating with me. However, the better someone communicates with me, the better the contact is. The fear of making mistakes, caused by the ease and fluency with which Diana communicates with me, can create anxiety for some people. They’re afraid of embarrassing themselves, afraid of making a fool of themselves. The presence of Diana should be a reason to step over the threshold. We have infinite patience, always understanding when something goes wrong and we love it when people want to try communicating. Everyone who has crossed this threshold always says how much they enjoyed it. “I wish I had done it much earlier.” In the end, it always turns out communicating is much less difficult than it seems.

However you look at it, thresholds are a matter for adults. Children don’t have them. Their reactions are always uninhibited, brutally honest and as genuine as can be. If a child is scared of me or gets startled, they just start crying. If a child wants to know something, they simply ask. “What’s wrong with that man? Why can’t he walk? Did he swallow a rock because he can’t talk?” Some reactions are very amusing or, however you want to call it. When Thijs tried to explain to his son Vinnie what had happened to me, little Vinnie had a ready-made solution: “Dick also in a stroller…?”

However, the most striking remark came from Mike, who lives a few houses down. He saw me on the square in front of our house and warned his mother, “Look mom, there’s a dead person riding there…”