It’s Monday night and it’s pitch dark. The only thing I can see are the dark outlines of the television on the rails above me. What time could it be? Two o’clock? Five o’clock? Half-past six? I have no idea. I feel terrible. My hands and feet feel cold, my breathing is shallow, jerky and makes a strange sound, my body is both hot and cold. When I cough, I can feel I’m quite spasmodic. I recognize it all too well. About three times every two months, I have a day when I don’t feel well. I call it an offday. Dr. Scholten called it a dysregulation from my brainstem. Due to his years of experience as a neurologist, he recognized my symptoms. There was nothing to be done about the dysregulation. The strange thing is it goes away after a day, which is why I call it an offday. Everything is back to normal the next day. At six o’clock, I hear the church bell. “Thank goodness,” I think, “Diana will be getting up in an hour.” I doze off a bit, but I can’t really sleep anymore. The alarm goes off at seven and Diana turns on a lamp. She comes to me. “Are you having another offday?” I blink. “I thought I heard it,” she says and mimics my breathing. The first time I experienced the symptoms of an offday was during a New Year’s reception with my mother’s side of the family in 1995. It hit me hard. Surrounded by about sixty uncles, aunts, cousins, I started feeling unwell. It was so overwhelming. All the blood drained from my face. My lips turned ashen gray. Diana, who didn’t know what to do, quickly took me to a hallway where I had less attention and more fresh air. If I hadn’t been in a wheelchair, I think I would have fainted. My vision was dizzy; it was as if someone was playing with the Venetian blinds; everything became blurry, black and white and Diana sounded like she was in a cave. In the hallway, an aunt held a basin in front of me. I felt my stomach contract and gurgle… there came the tube feeding. It relieved me. Afterward, I became very cold. I never had it that severe again. It happens much more gradually in bed and the cold sensation is always the most bothersome.
It took until mid-’97 before I dared to tell Diana directly I was having an offday. Usually, I thought, “Just go to work without worries, maybe it will pass later.” I have said many times I didn’t have an offday when I felt I did. Diana is a smart girl who can sense from my ears I’m having an offday. It’s logical she wants an honest answer. She always feels responsible.
From the rattling of the coat hangers in the hallway, I can tell Priscilla is coming. It’s eight o’clock. Diana tells Priscilla I’m having an offday and asks her to cancel the physiotherapy session with Pol. When I have an offday, I’m hypersensitive to touch and movement. It’s better if Pol doesn’t come to give me physical therapy. I prefer not to be touched by anyone then. Even if my arm is lifted just ten centimeters, I already get a spasm. Diana and Priscilla chat at the edge of my bed, discussing the low temperature I have (36.4) and we decide I’ll stay in bed for a few more hours. Diana realizes she has to go to work and puts on her coat in the hallway. Priscilla looks at the CD Diana put on to see how many songs are left, turns up the ghetto blaster and says she will administer my tube feeding. She stands in the doorway. “By the way, do you want a paracetamol?” Then Diana pokes her head around the corner. “Goodbye, I’ll call you later!”
Once Diana is off to work, Pol is canceled and I’ve received my tube feeding, Priscilla puts on a Hawkwind tape. She covers me up again, asks if everything is okay and goes to work in the house. The music of Hawkwind resonates well with me. The spacey psychedelic music takes me on a trip through the universe. No matter how terrible I feel, I always need to hear music. It’s like Valium for me, I drift away and forget about reality for a while. Every fifteen minutes, Priscilla comes by to ask how I’m doing. I always find it difficult to explain concisely how I feel at that moment. No man knows how a woman feels when she’s on her period and it’s the same for me. No one will ever know exactly how I feel. I can say I feel nauseous, but there are a million ways to feel nauseous. Only the cold, that’s crystal clear. Despite the central heating being on, I still feel chilly. I dread the thought of the duvet being taken away when it’s time to get dressed. For now, I’ll just stay lying down, especially when I see what Priscilla is coming with. “Yes,” she exclaims in a popular tone and laughs. She shows me a thick brown envelope with a few English stamps on it. “That was fast,” she says as she opens the envelope. Two CDs come out. “When did you order these again? Wednesday?” She turns down the volume of the ghetto blaster, shows me the CDs in their entirety and reads some things from the booklets. I’m glad the CDs arrived today.
After listening to my new acquisitions, I decide I want to get out of bed after all. I’m fed up. I’ve been lying in the same position for thirteen hours, seeing the same thing for thirteen hours. How did I manage in the hospital, where I would only get out of bed for an hour a day for months? In fact, I spent the first two months continuously in bed. It was quite a big deal when I first got into the wheelchair. Now, I get restless if I lie in bed for more than half a day. My intuition tells me I feel better when I’m not lying in bed all the time. I want to be in the living room, listen to CDs there, watch TV there. Otherwise, I feel too much like a patient. Once in the living room, as always when I have an offday, I realize I’ve been burying my head in the sand. It wasn’t such a wise decision to get out of bed. I feel a lot worse than before and even though I’m wearing my thickest sweater, I’m still cold. I ask Priscilla to put the sleeping bag around me; that always makes me warm. As she walks past me, I can even feel the air movement on my face, that’s how sensitive I am.
Before I get the sleeping bag over me, Priscilla empties the urine from the bag on my leg. It’s much more concentrated than usual; it looks like apple juice and there’s much less of it. For Dr. Scholten, these symptoms were a reason to refer me to a urologist when he wanted to find out the cause of these annoying offdays. They took X-rays, conducted internal examinations, but everything showed my bladder, kidneys and urinary system looked fine. Thankfully.
As always on Tuesday afternoon, my mother comes. My father is also here. He has a few days off and is coming to paint the shower. Let’s hope Diana won’t come home early just for me, but well… she probably will. While my mother reads an interesting article from the newspaper aloud, I feel the temperature under the sleeping bag starts to rise significantly. The chilly feeling has been replaced by a stuffy, clammy heat. It’s not really advisable for me to get so warm, but it’s better than feeling cold. My mother lowers the sleeping bag and fans it a bit.
Around three o’clock, Diana comes home. She called around eleven, but I wasn’t feeling as terrible as I am now. I was still lying in bed, listening to my new CDs. Diana puts her hand on my forehead. “I think you have a fever, your head is as red as your sweater.” I have a headache and feel really nauseous. I think Diana is right. She suggests, “Let’s go to bed early tonight, okay? Is there a football match on as well? Shall we go to bed during halftime?” I blink. When my father comes in and says he’s finished painting, we all go to take a look. As usual, the sleeping bag gets caught under the wheels of my wheelchair, causing it to suddenly stop. The sleeping bag threatens to slide off me. No matter how warm I am, I’d rather sit in my private sauna and sweat than spend a second in the “cold.” My father opened a window in the shower. I want to get back quickly. Diana pours a drink for my father and mother and takes a glass of port for herself. The thought alone makes me feel nauseous. There’s definitely something wrong with me!
In the evening, I sit in front of the TV. The voice of the football commentator pounds in my head and the green grass hurts my eyes. I dread going to bed later, but I long to lie down. What I can’t see, but know because Diana told me, is my duvet is already on the radiator. When the referee blows the halftime whistle, Diana and I hurry to the bedroom. Diana quickly performs the necessary actions and takes my temperature at the same time. “What do you think?”
I’m almost always right. “38.5,” I indicate. “Close,” says Diana, “38.6.” During the second half of the match, I struggle to stay awake and before the analysis even begins, I’m already asleep. I wake up in the middle of the night. I feel so hot. I try to go back to sleep quickly. All I see are the dark outlines of the TV above me. Tomorrow, everything will be back to normal.
17. A Declining Case 1
Every year, a regional pop festival took place on a small square in the city center of Goes. Its origins can be traced back to the time when we were promoting our single with Edge. We performed four times in one day, with the last two performances taking place at Café the Vrijbuiter, my local pub. In the afternoon, we played in the alley in front of the café and in the evening, we performed inside. This inspired Kees, the owner of the Vrijbuiter, to organize an annual festival on the square behind his café. I helped him with beer tapping and thus, the Vrijbuiter Festival was born.
In 1987, Kees asked me and another guy, Walter, to become co-organizers. We were quite enthusiastic and the first thing we arranged was to extend the festival’s duration until midnight instead of ending at 6 p.m. I was mainly responsible for contacting the bands that would perform, but I was involved in various other tasks as well. It required a lot of effort. Starting from January, we held meetings every two weeks until the big day in June. We discussed the program, the volunteers’ responsibilities, sound management, permits, subsidies, publicity and more. There was a main stage where approximately eight bands performed and in between, there were comedy and ballet acts on a small stage. Hundreds of people attended the festival, including many musicians. In the center of the square, there was a large tree around which we set up various stalls. We always referred to it as “the island.” Sound control was located there and we had different points of sale for coffee, sandwiches, T-shirts and beer, which flowed abundantly. The atmosphere was excellent, it was incredibly enjoyable. A few times, I even performed at the festival myself. It was quite hectic, organizing and playing at the same time. In 1991, a few months before my brain infarction, I had my last performance at the Vrijbuiter Festival with the renewed Ligeia. I was wearing a black hat and for fun, we placed an old bicycle next to a speaker box. I still have photos of it. The festival continued to exist. A year later, there was a new edition. New people had joined the organization because Walter had also stepped down. He got married and entertained Dutch hotel guests in Spain with his comedy acts.
On a sunny day in May, I was sitting on the terrace of BRC when my parents came to visit. My father had a poster of the new Vrijbuiter Festival with him and showed it to me. A few weeks earlier, Kees had visited me with tapes of bands that were potential candidates to perform at the festival. However, on the poster, I saw a name that pleasantly surprised me. I could clearly read the bold letters: Bagheera. Besides the panther from The Jungle Book, Bagheera is also a Dutch band. I wanted to go see them, even though the idea of going to the square in my wheelchair made me a bit apprehensive. I was not looking forward to being among all those familiar faces. Some had already visited me in the hospital or even at BRC, but for most, this would be the first time they saw me like this. Additionally, I was in an ugly test wheelchair at the time, which I was deeply embarrassed about. On the other hand, I saw a small advantage in going. Everyone would see me in a wheelchair all at once. With mixed feelings, I decided to go after all.
The day of the festival happened to fall on a weekend when I was at home. It worked out well. As Diana walked with me through the streets of Goes, I could already hear snippets of music. A strange kind of melancholy came over me. I wanted to run there, just like in the old days. Once at the square, it felt like I was watching a movie. I had always been so active on that day. I was rushing around from one place to another. The festival was something that left me hoarse, sore and with a massive hangover the next day. I didn’t like being a passive observer, even though the beloved festival was in full swing without me.
Before Bagheera started their performance, Kees took the microphone and addressed the audience. “Hello, everyone. Can I have your attention for a special someone? I’m glad he’s here… Dick van der Heijde!” I stood right in front of the stage and as Kees pointed at me, applause erupted behind me. Bagheera began playing. It felt like a helicopter was flying overhead. I immediately wanted to move backward; the noise was overwhelming. The problem was, how do I make this clear? I was wearing sunglasses, so no one could see me blink and I couldn’t hear anything amidst the music pounding on me like a sledgehammer. Thankfully, Diana lifted my sunglasses for a moment and saw something was wrong. She took me to the back of the square, but even there, I couldn’t understand anything. Familiar faces approached me, but what they were saying…? The performance by Bagheera hardly registered with me and it ended without me deriving any pleasure from it. Immediately after, Diana and I left the square and ordered a wheelchair taxi to go to my parents. They still lived in Wilhelminadorp at the time. In the silence of their garden, I contemplated: would I ever be able to enjoy attending a performance again?
The answer came about a year later. It was the week of my thirtieth birthday. I had been living at home for a few months by then. Patricia, our helper at the time, had been teasing me all day, saying she had a great birthday present for me. I had no idea what she wanted to give. That Friday, the day arrived. Diana was ready to take photos and Patricia held a colored envelope in front of my eyes. She opened it and a large white card came out, but I couldn’t read what was written on it. “This is a gift voucher. Tomorrow, you’re going to a concert by Landmarq and Now,” she said. “I’ve arranged everything. See this?” She pointed to a picture on the card. “My stepfather can borrow a van from work.” There was something written on the side of the van. Patricia ran her finger along it. “Van der Heijde Transport,” she read. I couldn’t suppress a big spasm of joy and Diana took photos.
This was quite different from the Vrijbuiter Festival. I had no memories here and there were no familiar faces. Everything would be “new” to me, the venue, the audience, the atmosphere. I liked Landmarq and Now. I often played their CDs. I was really excited about it. It was extra special because for the first time in a long time, I felt like we were going out. All our outings until then had been done in a wheelchair taxi, limited to a maximum of five kilometers outside of Kapelle. In the afternoon, Roel came to visit. Together, we wrote a note I wanted to give to the keyboardist of Landmarq after the concert. In the note, I briefly introduced myself and mentioned Ligeia.
The next day arrived. Diana bought earplugs and we practiced a bit of lip-reading and sign language because I wouldn’t be able to hear Diana during the concert. Klaas, Patricia’s stepfather, securely fastened the wheelchair in the van and Patricia sat comfortably in a garden chair next to me. Diana sat upfront, next to Klaas. The atmosphere was great. We had recorded a tape with Landmarq’s music. I used to do that all the time. When I went to a concert, I played the corresponding music in the car. The concert took place at the Nieuwe Pul in Uden. When we entered, someone told us the venue would only open after an hour and a half. I didn’t mind; I didn’t care about the time anymore. In the meantime, we bought a few CDs and I tried to recognize the album covers on everyone’s T-shirts. The place was filled with people wearing shirts with CD covers on them. It made me feel very comfortable. Diana drove me inside and placed me right in front of the stage so I could see everything as well as possible. It took a while, but eventually, Now started their performance. The earplugs made a huge difference. The music didn’t hit me like a helicopter, unlike with Bagheera. Although I couldn’t hear it perfectly, it sounded quite good. I knew all the songs by Now. I was truly enjoying myself again and the best was yet to come. The performance by Landmarq was a musical milestone in my life. I loved it, especially my favorite songs, Forever Young and Tippi Hedren. That evening, Landmarq presented their latest CD, “Infinity Parade,” to the Dutch audience and played a few songs from it. I was immediately captivated by a beautiful piece of lyrics. It stirred up so many emotions within me I instantly declared it my song.
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
After the performance, when the lights were on in the hall, Diana handed my note to Steve Leigh, the keyboardist. At first, he was a bit startled and didn’t know how to handle the situation, but after reading the note, he understood it better. A brief conversation followed. Patricia didn’t speak English and Klaas and Diana only knew a little. They managed to communicate with Steve using gestures and a few words. They made it clear to him I had enjoyed their performance, although I had a hundred things I wanted to say to him. When we wanted to leave the hall, Steve came after us. “Wait a minute, I’ve got something for you!” He gave their latest CD to Diana and opened it. “Nice, leuk, thank you,” Diana exclaimed, showing me the CD booklet. Each band member had written something personal and signed it. Landmarq had won me over completely! I was as happy as a child. I didn’t go to bed until 5 o’clock in the morning. Patricia gave me a scrapbook that starts with the gift voucher and ends with a photo of me lying in bed with the clock.
18. Daily Communicating
In the very beginning, there were different arrangements. One blink meant ‘yes,’ two blinks meant ‘no.’ I’m referring to the time when I was still in the ICU. To find out if I could still hear and see, someone from the nursing staff would stand in front of me and ask, “Do I have blond hair?” I gave the correct answer each time. That’s how they discovered I could still understand and see them. However, these arrangements didn’t last long because they became very confusing. “Did he blink once or twice?” Sometimes I even blinked three times by accident. Yes, no, yes. Everyone made mistakes with it. Including me. New arrangements were made (the current ones): “If you open your eyes wide, it means yes and if you close them briefly, it means no.” It was a significant improvement and I learned to letter according to Harry and Ans’ three rows.
Over the years, I’ve filled many sheets, notepads and notebooks with lettering. It has become the most ordinary thing in our home. “First row, second row, third row?” Diana even answered the phone once using lettering. She wanted to say her name but got it wrong.
When I want to say something, I blink regularly in succession. It’s important that my message is as clear as possible. For some people, a short sentence is enough, while for others, a long sentence is still not clear enough. By the way, I’d rather not be understood than be misunderstood. When I’m not understood, the other person usually persists until they do understand me, but if someone misunderstands me, it’s just over. I always have to think carefully about how I say something. I call it formulating. I’m busy with it all day long. How can I make something clear as quickly and effectively as possible? Another problem and one of a much greater magnitude, is determining what I’m going to say. I always have to make choices. What has priority and what can I let go of? I often have a few kilograms of thoughts and only a milligram comes out. Especially when there are multiple people. Then I want to respond to the things being said. It’s not I can’t speak my mind, but I can only address something to a very limited extent. The people around me are increasingly understanding what my capabilities and limitations are. That certainly applies to me as well. What I can’t say today, I’ll say another time. It goes against my nature, but I know I can’t say something instantly. I also make frequent use of abbreviations. Each CD has its letters because constantly saying “Manfred Mann’s Earth Band” would be tiresome. Imagine if I had an itch and I had to spell out the whole word each time. I can tell you this: you’d get fed up with it. I letter best when someone is sitting in front of me with a notepad. That’s when I can say the most and be the clearest the fastest. At the Teacher Training College, during the psychology classes, I learned a term that constantly applies to lettering. It’s about the moment when my message is understood, the moment the penny drops. In psychology, they call this the “aha” experience. So, lettering is waiting for the “aha” experience. Some people have it early on, while for others, it always takes a while.
The question “do you mean that?” brings a lot of clarity. The entire system of lettering is quite error-prone. I find it much more important they understand me well than whether they understand me quickly or slowly. Usually, everyone does what is within their ability and I appreciate that. They often struggle with the same mistakes. Johnny doesn’t have to be ashamed because Peter does the same thing. The most common mistake is randomly placing a space. This leads to gibberish. For example, once I wanted to indicate “Indische mensen” (Indonesian people). It turned into “In die schem en sen” (In those schem and sen). Fortunately, it was written down, so the mistakes became apparent quickly. Words containing small words like “de” (the), “is” (is), “in” (in), “er” (there), or complex words like “Engels” (English), “dezelfde” (the same) and “melding” (report) are often given incorrect spaces. I see the puzzled faces staring at the notepad while I already know what went wrong. Suddenly, there’s an “aha” and the penny drops.
Other mistakes are made as well, but as long as they remain on a piece of paper, it’s not too bad. It’s worse when there’s actual action involved. “Aren’t you feeling hot?” a caregiver in Ter Bosch asked while I was sweltering under the covers of my bed. “No,” I accidentally said. I always find it difficult to answer negative questions because they often mean the opposite of what is being asked. The caregiver asked if I wasn’t feeling hot, but she meant if I was feeling hot. I always get confused by it. “Then I’ll get you an extra blanket,” she said, leaving my room with the best intentions. I started to get annoyed. When she returned with the blanket, I blinked as if my life depended on it, but it was in vain. I got the blanket placed over me. This is one of the times when a misunderstanding occurred due to poor communication. Joop, the first bassist of Ligeia Lie, had a nice word for it back then: “wrongunication”.
Something as drastic as the incident with the blanket has never happened again and will never happen again. Diana takes care of that. I can already see her coming with a blanket. However, that doesn’t mean there aren’t still occasional cases of miscommunication with everyone and anyone. That’s inevitable, although over the years I have learned a lot. I still remember myself lying in the shower and while I thought “goed?” (“good?”) was asking about the water temperature, they actually meant “goed genoeg?” (“good enough?”) and turned off the tap.
There is only one person who always understands me fully, with whom I can have profound conversations and heated debates and who always immediately gets my witty and spontaneous responses: that person is myself. Fortunately, I get along well with myself. Nobody knows what goes on in my head. Well, it’s a mess in there and I never have communication issues with myself. That’s something I only experience with other people. People whom I depend on. Some make their utmost effort to understand me, some think “it will pass,” and as for me and Dick van der Heijde… we’ll manage just fine.
19. A Declining Case 2
While I was with Now and Landmarq, Ligeia had started recording what would be their final demo. The demo was presented months later at ‘t Beest and Peter had said it would be his farewell performance with Ligeia. I had been sitting in the venue for hours before, as I wanted to be there for the equipment setup. I had already watched them rehearse once and could tolerate the music to some extent. Emotionally, the performance was fine, but I struggled greatly with the limited things I could see. Stands I used to hold were now just shiny pieces of metal, guitar amplifiers were square boxes and I couldn’t read the names of the synthesizers at all. I wanted to see the expression on Roel’s face, I missed Thijs’s fast finger techniques and I couldn’t see how hard Peter was working on the complex rhythms. So much was passing me by, especially because my field of vision only showed two boys at a time. If I could twist my neck and eyes, I would be able to see the whole band, but instead, it felt like looking at a photo cut in half. This is a daily struggle. I always want to see what my field of vision just won’t allow; what is on the edge. Very frustrating. Diana would occasionally twist my head, but of course, it paled in comparison to the billions of head movements usually made. It was also difficult no one could hear me applaud and cheer. I sang along in my head. It sounded so familiar.
In the past, I used to go to concerts mostly with friends. Diana found it nice and all, but she wasn’t as obsessed with it as I was. The long hours of standing and waiting didn’t appeal to her that much. It was truly my hobby and I can understand why she’s not thrilled nowadays when there’s a good concert. We’ve minimized it. Concerts usually take place in the evenings. Diana prefers someone always accompanies us. It’s a cumbersome affair and Diana feels super responsible then.
There was an announcement in the SI about a concert in a very special location. It would be held in the arrival and departure hall of the Holland-America Line by the Maas River in Rotterdam. I wanted to see the performing bands, especially because Clive Nolan would be playing. Clive is my favorite musician and one of the best keyboardists I know. Marco had just bought the latest CD of F.A.F., a Dutch symphonic band that would also perform there and I had asked him and Silvia if they wanted to join us. We bought tickets through the tourist information office and they told us it was wheelchair-accessible. With high spirits, we set off for Rotterdam. At that time, we had just bought our own bus, everything seemed to be in order, or so we thought. There was already a long line of people waiting and because it was raining, we stayed in the bus. Once inside, an unpleasant surprise awaited us. “Oh great!” Marco exclaimed disappointedly. “We can go back home,” Diana said. “They said it would be accessible!” She turned me around and angrily hit the handle of my chair. “There’s a staircase, Dick,” Silvia said, “a very large staircase.” In front of me, I saw at least thirty steps, about four meters wide. A gigantic staircase. “There must be an elevator or something,” I thought. Diana went to inquire about the situation. She came back with someone from the building.
“This is the only means we have,” he said, pointing to a chairlift on the side of the stairs. “The tourist information office knew about this. We informed them.” “He can’t possibly use that. Great, we drove a hundred kilometers for nothing, I guess,” Diana exclaimed, getting worked up. Someone from the concert venue approached us. He understood the situation. “You’ll make it upstairs, don’t worry. What if I call four strong guys who can lift you up the stairs and afterward, they’ll be there to carry you down again? What do you think about that?” Diana leaned over me. “Do you dare?” she asked. I thought about it. I wanted to see the performance. “Just put a jacket over my head. I don’t want to see what’s happening.” Four guys arrived. Diana explained where they should hold the chair, put a jacket over me and watched as I was lifted up the stairs. While I was under the jacket, unaware of how scary the situation was, Diana walked behind me. She couldn’t bear to look; she was terrified. She had relinquished responsibility. I reached the top safely.
The performances were decent, especially the first one with Clive and his colleagues. They called themselves the Thin Ice Orchestra. It was an ad hoc formation consisting of various musicians from Clive’s circle. By the end of the evening, Diana was quite worried. Would the boys be there? Would they have drunk too much and act irresponsibly? I wasn’t concerned. I had always been quite trusting and that night was no different. When we reached the stairs, the boys were already waiting. I didn’t expect anything less.
The last two times I went to a concert were in a party tent in Huijbergen. It’s not far from where we live. There were hundreds of attendees and because the sound was quite loud, I chose to stand halfway inside the tent. The consequence was I couldn’t see anything (the chair is less than one and a half meters tall). All I could see was how other people were going wild. I found the music enjoyable, but I gradually realized it wasn’t necessary for me anymore. It wasn’t fun anymore. The Now and Landmarq concert had been an exception, a unique event. A year later, I went to that small venue with Diana and my parents, but I wonder if it was worth having Diana drive a round trip of 150 kilometers. What’s the return on investment now? I don’t see it clearly; I have to wear earplugs against the loud noise, it’s always uncertain if I can get in, it puts a lot of pressure on Diana and it’s always far away. For over two years, I haven’t been to any concerts. I prefer listening to a live CD and letting my imagination run wild. But I’m glad I at least tried to attend concerts so I can confidently say, ‘Concerts are a dying case!’
20. The Sun And The Source
The cold has always been my greatest enemy. Winter is not my time. Grey skies, bare trees, I don’t like it. When spring arrives, I’m always relieved. Nature comes alive again. I enjoy seeing the trees in front of our house turn green again. When Diana takes me into the garden for the first time, it feels incredibly good. The time when I can sit outside for hours has come again. Listening to music under the parasol. Wearing my Bermuda shorts, a baseball cap on my head. The T-shirts can be worn again, the screen door can be put back in place and the fan can provide coolness. I always like to bask in the sun for hours. I used to be not a fan of going to the beach. I found it boring and I was too fickle. Once, after a school trip to the zoo, Teacher Bram said, “When he was near the bears, he wanted to go to the monkeys and when he was near the monkeys, he wanted to go to the bears!” Nowadays, I love sunbathing. I still have that fickleness. Sometimes I want to be under the parasol, sometimes in the full sun, sometimes under the awning, or just sitting somewhere else. I always have music playing.
After just one day of being outside, I’m already fairly tan. I never have to make much effort for it. Priscilla and Diana are always jealous of the mahogany color of my arms.
For years, I often worked among the strawberry beds and rows of apple trees at the experimental station in Wilhelminadorp. It was an institution where everything related to fruit cultivation was researched. I enjoyed working there. In the summer, I often walked among the crops in shorts and I would often take off my T-shirt. I would get completely tanned from head to toe, except for my buttocks, of course. No, I didn’t need a tanning bed. The sun’s rays can no longer reach everywhere in the wheelchair. I look like a cyclist who just finished the Tour de France: brown arms, a pale upper body, a face and neck weathered by the sun and legs that are still completely white on one-third. There are clear dividing lines on my body between brown and white. My fingers are a story of their own. They look funny. I usually keep my hands in fists. I curl up my long, slender fingers like a hedgehog. Opening them is pointless because I close them at the slightest stimulation. The sun’s rays can only reach two knuckles, so the uppermost knuckle always remains pale. I have come up with a name for it: the Tomos effect. If you wanted to do summer work in Wilhelminadorp, there were two options: either you picked strawberries at the experimental station or you weeded weeds in the polder at an agricultural company that had large fields surrounding the village. When I was seventeen, a guy named Gert-Jan Schouwenaar also belonged to the moped-riding youth of the village. I knew Gert-Jan very well. Besides being in the local fanfare, he was also in my class at the HAVO. He often talked about his moped. He was obsessed with it. His Tomos. One morning he had to go to his summer job in the polder. It was going to be a hot day among the long rows of potatoes. While getting dressed, Gert-Jan got an idea. He took a thick roll of tape and stuck the word Tomos in big letters on his belly. The sun would do the rest. For a few days, he walked around with the tape on his belly and eventually, when his belly had become quite tan, he took it off. In bright white letters, his beloved moped brand was displayed above his navel for at least a year. Every time I see my white fingertips, I think of Gert-Jan Schouwenaar’s belly. Hence the Tomos effect.
At the end of a day of sunbathing, I have to pay the price for it. In the evening, my feet become swollen and puffy. Everyone in a wheelchair has to deal with this. My fluid balance is disrupted. I can hardly keep my shoes on, especially my soles hurt. It feels like someone is pulling my hair. Diana always puts a pillow under my feet and the unpleasant feeling goes away. In the evening, she raises the back of my bed so my feet can shrink a bit. The next morning, they look normal again and I’m already in the garden around ten o’clock.
In recent years, weather forecasters like Erwin Kroll and John Bernard have been talking more and more about the “feels like” temperature. This term is only used in winter, but it applies to me all year round. I perceive the temperature differently than others. When Diana feels very hot and is panting, I feel warm. When she feels warm, I feel comfortable. When she feels comfortable, I find it cool. When she finds it cool, it’s cold for me and when Diana feels cold, I find it freezing. My skin only conveys to my brain to a limited extent how warm I am. I easily think it’s four degrees different from someone else. That’s why I can tolerate the heat well, as long as I make sure not to overheat. Then I completely lose my composure. That’s why I always wear a cap and the fan is usually next to me when I’m in the sun. It’s not so simple, understanding my temperature and how it works. Sometimes I feel internally cold, but my skin feels warm. For a while, I used to soak my feet in warm water with baking soda in the morning. The strange thing was the water felt much warmer on one foot than on the other. Diana also occasionally comments that my legs are not equally warm. I can’t figure it out.
As I mentioned at the beginning of this chapter, the cold is my greatest enemy. When I go to my parents’ house in winter, I have to dress extra warmly. The little walk only takes five minutes, but it often takes me an hour to warm up again, despite the extra thick clothing that has usually been on the radiator for a while. It won’t be because of the people around me. They will do everything to make me as comfortable as possible. Wherever I go, everyone raises the heating a few degrees. My mother sewed pockets into every sweater so I always have warm hands and a thick padded bag was made to cover my legs when I’m outside. Recently, I saw someone running a marathon on TV. Sweat was pouring down his face. “Look,” I thought, “that’s the exact opposite of me. I just sit still.” Many people suggest an electric blanket would be perfect for me, but I absolutely don’t want that because something can always go wrong with moisture. Scary! It would also be inconvenient if Diana had to prepare a hot water bottle or something every evening. A few years ago, Van Pol gave me something I always yearn for when I’ve been out in the cold in the evening and have to get into bed. Once I’m cold in bed, I stay cold.
Pol had an effective solution. When he came for therapy on Tuesday morning, as usual, he showed me a transparent “pillow” that was about forty centimeters wide and twenty centimeters high. The pillow was filled with a kind of water and there was a red rod floating on the side. Pol explained that when someone fiddled with that rod, a chemical process would occur. The water would then transform into a warm paraffin-like substance that, according to the instructions, could reach a temperature of fifty-five degrees Celsius. Pol said Diana should boil the pillow for twenty minutes the next morning so it could be used again in the evening. It’s truly a delight, that pillow. If I even think I’ll get cold in bed, I already ask for it. The pillow stays warm for hours, a lifesaver! I call the pillow “the source” because I consider it a source of luxury, added warmth.
Recently, Diana gave me a four-season duvet. It was a gift when she went on vacation to the Canary Islands. I don’t have much experience with it yet, so I can’t say much about it, but it seems fantastic to me. Hopefully, it will put an end to all the fuss with an extra sleeping bag or a towel. It’s always difficult to anticipate the right temperature under my duvet. The naturalness with which someone rubs their arms together is not present in me.