6. Let Loose
1986 was the year for me. I moved into the apartment Diana’s sister Jenny and her boyfriend René left behind when they bought their own house and together with Peter Heyt, I formed the sympho band Ligeia Lie. My brother had mentioned a few times, “Heyt wants to talk to you. Every time I run into him at the Blaauwe Steen, he says he wants to start a band with you.” On a Thursday evening, Peter and I spoke and made big plans. I played IPs of Marillion, IQ, Pallas, Pendragon and Twelfth Night, music like that is what we were going to play too! Pure sympho where everyone could let loose. We quickly assembled a lineup. We had an excellent rehearsal space and a large sound system at Gerrit’s house.
Gerrit was our guitarist. I met him on his birthday. He and his brother had been renovating a very large house for months. Peter had his drum set there and I had gone to check it out with him. “Shall we go to Gerrit’s parents’ place? It’s his birthday today, he’ll probably be there. Then we can talk about it right away, it’s nearby.” We hopped on Peter’s Mobilette and zoomed to Gerrit’s parents’ house, which turned out to be less than a hundred meters away.
It was a fantastic period of over three years in which I gave my best. I wrote almost all the music on my guitar and Martijn’s synthesizer, which I always took home after rehearsals. The ideas I brought were further developed by the band and the most usable pieces became songs. One evening, Roel came up with a name. The four of us were sitting in a pub: Gerrit, Peter, Roel and me. “I have an idea for a band name,” said Roel. “What about Ligeia Lie?” “Write it down,” Gerrit asked. Roel grabbed a beer coaster, asked Kees for a pen and wrote down the name. We took turns looking at the coaster. “Beautiful!” said Gerrit. “Awesome!” said Peter. “Brilliant!” I said, “but what does it mean?” “Ligeia is a story by Edgar Allan Poe and I made up Lie,” explained Roel. “I’ll lend you the book.” “Ligeia Lie, Ligeia Lie, sounds good, let’s keep it,” I said. “Okay?”
I didn’t play saxophone much in the band because I had discovered something else I could pour my heart and soul into: singing. Roel had a good voice and I always helped him with creating vocal lines. So we often stood together singing and because it sounded great, we decided to continue doing that. Roel with his high voice and me with my low voice.
In the studio, it became clear how beautifully Roel could sing. We had gone to a studio in Vrouwenpolder to record a few songs. We had pooled some money to make a demo. It turned into a very mystical audio tape that received an important response. The Marillion fan club called me to ask if we wanted to play at their annual fan club day in Tivoli Utrecht. There would be a thousand people attending and there was even a chance the guys from Marillion themselves would come. It seemed amazing to me, but since we were without a bassist at that time, I asked for a week to think about it. Huib, whom I had been in the same class with for years and who had also played in Beaux Trytus and Edge, offered to help us and quickly learned our songs. Seventeen of us set off in a packed bus and four cars towards Utrecht. I became more and more nervous as we approached the city. The performance was a success, the highlight in Ligeia Lie’s history.
A year later, the curtain fell on the band. It was a shame because the atmosphere was very good and we were just working on a new demo. We had a great time during our trips to the studio in Werkendam and we were in the process of recording a song of over twenty minutes in Vrouwenpolder with a producer. What happened? Half of the band wanted to expand and the other half vehemently opposed it. An unsolvable conflict arose and the only thing we could do was end Ligeia Lie. However, we did finish the recordings in Vrouwenpolder because a lot of money and time had already been invested. Peter, Roel and I stayed together, though. I bought a synthesizer and with Thijs on guitar and Pim on bass, we continued. We named the band simply Ligeia, rehearsed in a warehouse and after over a year of practice, we made a demo. Unfortunately, there weren’t many performances for me because a few months later, I had a stroke. Thijs visited me in Neurology and asked what he should do with the band. They had just placed second in a talent competition and weren’t sure if they should continue. I didn’t want them to stop, so they kept going… And how! With a new keyboardist, they made a fantastic demo dedicated to me and Ligeia became one of the most requested bands in the province. The demo featured an incredibly beautiful song, ‘Pyramids,’ which deeply moved me from the first moment I heard it. Then Peter and Roel quit. They did something with different vocals and drums, but for me, the final chords of ‘Pyramids’ were the final chords of Ligeia.
How would my life have turned out if my father had brought a tuba instead of a saxophone for me back then? Would I have played in Beaux Trytus? Edge? Blubber de bie? Ligeia Lie or Ligeia? Diana would probably have been a vague acquaintance I occasionally ran into.
On the wall in the living room hangs a beautiful golden saxophone. I bought it in the last year of Ligeia Lie. Anyone who thinks it hangs there uselessly is mistaken. Maybe it’s idle, but it’s definitely not useless. My thoughts often wander back to the past and I cherish my memories.
Currently, I’m listening to the CD with all the songs we recorded in the Vrouwenpolder studio. We had nine copies pressed and ‘Pyramids’ is on it too. I can listen to this song a thousand times and a thousand times it touches me emotionally. Roel sings, “Dream with me, I’ll give you a reason to slip away.” I hear the tremor in his voice.
“Hello, first row, second row, third row, fourth row, function1, function2,” mutters the voice of my speech computer, but it has trouble with the correct emphasis. On a large table next to the TV is a modern laptop computer. Various wires come out of it, neatly concealed. They lead to various devices, a speech module that can sound like a woman or a child, a color printer and a switch box with a touch contact I can operate with the tip of my lip. The touch contact is similar to the touch keys you used to see on TVs to select the right channels. Inside the computer is a program specially written for me. Unfortunately, there are a few moments when the speech module goes haywire. “First row, second row, third row, fourth row, function1, function…” it says rapidly and I can’t keep up. There was a time when something like this would have greatly upset me, but nowadays I just laugh about it. The few times I use the thing, it’s just a computer. I’ve experienced too many frustrations, disappointments, disillusionments and feelings of helplessness in the past before this little device was here. I don’t care much anymore.
Carefully, Ans, the speech therapist, enters my room in Neurology. She pushes a cart with a monitor and a computer keyboard. She parks the cart next to my bed and asks if I can see the monitor well.
“We’re going to see how many letters you can read in a row.” She folds down a railing on my bed and places the keyboard beside me. A few days earlier, I was still in the ICU and Ans and Harry had started with the letters. Together with Diana, I had practiced a lot and we were already doing reasonably well. “Computers, I don’t know anything about them,” Ans said. She plugged in a plug and searched for the buttons to turn on the computer. The monitor flickered on. “I received some instructions from the guys from IT downstairs.” I saw Ans take out a piece of paper from her pocket and type something thoughtfully. A four-letter word appeared on the screen. “Can you read that?” she asked. Through lettering, I indicated it said ‘hand.’ “Great,” said Ans and we did a few more four-letter words. “Now let’s do words with five letters.” ‘Bloem’ appeared and I had no trouble reading what it said. That only came later. Words with six letters were already difficult. Words with seven letters posed problems and with eight and nine letters, it was a guessing game to figure out what they said. I could see them, but I couldn’t read them well. Seeing had become limited to perceiving. Ans said we had done enough for the day. She looked at her watch, turned off the computer and said she would come back on Friday.
That Friday morning, large letters appeared on the monitor. They filled the entire screen. It made me think of the many times as a boy when I would sit for hours watching my father draw letters with a pencil, a ruler and a compass. He is a painter and can set letters like no one else. He even won a national competition with it when he was a student. These letters resembled his. Ans showed me the rows in the computer and explained with a simple press of the keyboard, she could stop the letters that appeared on the screen one after another. She also said, besides these three rows of letters, I could expand the system with as many rows as I wanted. In the following weeks, we filled the rows with punctuation marks and numbers, came up with short messages, chose the most common verbs. Also, there were rows for possessive and personal pronouns and the names of all my friends were entered. Actually, I would have liked to have the whole dictionary in it, but fortunately it never got that far.
Martin Willems, the social worker from the hospital, told me people from BRC would come to get acquainted. They came on a Monday afternoon and sat by my bed. They introduced themselves. “Hi, I’m Wies van Dalen. I’m a nurse at BRC and I’ll be your mentor there, you can call me the contact person,” said someone who looked sympathetic. “I’m Wim Hartenbach, the social worker,” said someone who seemed to be retiring soon. “And I’m Bart Zegsman and I work as an occupational therapist at De Kern. I specialize in communication aids,” said a boy with short red hair and thick horn-rimmed glasses. Harry, Ans and Martin were also there and they talked a lot about me. “I want to try something with you,” said Bart, bending down to pick something out of a briefcase. “Can you move something?” I tried to open my jaws as best as I could. Bart saw it and said, “That’s enough.” He showed me a switch and held it under my chin. “The idea is you move your chin a little when I give the signal, so the switch makes a click. I’ll count to three: one, two, three,” said Bart. I opened my jaws slightly and heard the switch click.
“One more time,” said Bart. We did this about ten more times and then Bart said, “I think you can write a letter within six weeks.”
Ans sent her floppy disk to Bart, but I never got the impression he looked at it. All her work was set aside and Bart did his own thing. First, he came with a small black device the size of a pocket calculator. I immediately saw I couldn’t do anything with it. Where were the reports from the ophthalmologist? The occupational therapist? Speech therapy? Wasn’t anything transferred? It had been known for months I couldn’t read small letters and now I was looking at them. I couldn’t understand it! And the operation. A flexible rod was attached to the gate of my bed, with a switch that barely touched my chin. It was all still in the experimental phase, but I found it so clumsy. I saw myself lying there with a headband around my head and a plaster chin rest, but it got even weirder.
Bart installed the ‘Luci’. I recognized this device as the board with the lights. Where Dr. Terpstra needed a morning to discover I couldn’t work with the device, I spent five months with Bart. And I even went along with it. It must have looked ridiculous. I was sitting right up against the board, which had been turned a quarter turn, wearing large glasses and a patch over one eye. “Here it became clear that the wrong horse had been bet on.
One morning an ear doctor was in my room. Bart had come up with the idea that I would get good fixation for the switch by using an earpiece with a little brace attached to it. The ear doctor filled my left ear with silicone and a week later, the earpiece was ready. I had to wear it day and night for a whole week to see if it wouldn’t cause irritation. At night I was terrified that my head would twist in the pillows and that I would knock the earpiece against my eardrum. A normal person would adjust their head if something wasn’t comfortable, but not me… When the night nurse came I would gladly hand over my ‘ear’ and only then dared to go to sleep. In the end Bart attached the brace to it and I felt just like a receptionist.
Henk Jacobse was my rehabilitation doctor. At a certain point he felt that something had to change because I couldn’t leave empty-handed. Contact was made with the private company Omega. Just a few days later, a delegation visited BRC. Now that was decisive! Omega had been founded by the blind Boudewijn Vermeet. He had started it out of his own need to connect a computer to a speech module in order to ‘read’ texts in this way. The company had turned into a goldmine.
In a room he and Werner (a German computer geek) had set up a trial arrangement. I was thrilled that I no longer had to look at a board with letters and wished I had met these guys half a year earlier. By the way, the first encounter with Boudewijn and Werner was quite funny. Holding onto Carolien’s arm, the speech therapist, Boudewijn approached me to touch my face so he would know who Dick van der Heijde was. We were quite the trio – Werner barely speaking Dutch, Boudewijn unable to see, and me unable to speak.” It was all about communication! I was allowed to borrow the trial setup and it was placed in a separate room so I could practice undisturbed. The computer program was written for me in a few days and still had many areas needed improvement. Diana and I made a list and soon I received an improved version. I had forgotten to mention the speech module should stop if I didn’t use the switch for, let’s say, ten seconds. Now, if the switch was no longer in place, the speech module continued tirelessly: “first row, second row, third row, first row, second row, third row, first row, second row, third row…” Sometimes it took ten minutes before someone came to check and I sat there, “first row, second row, third row, first row, second row, third row, first row, second row, third row.” I was getting completely annoyed by it and developed a huge aversion to this device.
When I moved to the Ter Bosch nursing home in Goes after BRC, I was allowed to continue borrowing the computer. Bart still hadn’t managed to find a proper way to attach the switch to my chin. He tried everything, but nothing was successful. “I can’t exactly drill a hole in his head,” he once said desperately to Diana. My brother immediately figured out how to attach the switch at Ter Bosch. He lived close by and would always drop by after work. One time, he took my electric shaver, shaved my chin, placed the switch in its hollow, covered it with a plaster and said, “done and dusted.” Later, he made a perfectly fitting bracket out of flexible wire. Once I was living at home, Bart brought the final computer and saw the bracket. Yes, I thought, “take a good look at it.”
The Luci had a nice alphabet divided into four rows, which I had memorized well because I thought I might need it. The alphabet was divided both horizontally and vertically, with the most common letters appearing first. I wanted this as the basis for the computer. A period of writing and calling Werner followed. He regularly sent floppy disks with improved versions, but whenever I had two things improved, a third mistake would often creep in, which then had to be corrected.
Werner was supposed to come over one afternoon. Diana and I had been waiting since one o’clock, but Werner didn’t come. The phone rang at six o’clock. Diana picked up the receiver, pressed the eavesdropping button and said her name. “Allo, mit Werner,” came through the speaker. “I’m standing in Kapelle at the station, can I still come over?” Of course, said Diana, “but why are you so late?” “I accidentally went to the wrong Kapelle with the train and couldn’t find your street. Then someone said there are two Kapelles there and I should go to the other Kapelle.” “Well,” said Diana, “luckily you’re here. Do you know how to walk to our house?” She told him the best way to walk and said, “We’ll see you later.” She hung up the phone and turned to me. “It’s a shame, he was in Capelle aan den IJssel,” she laughed. Five minutes later, Werner was in the room. He ate something and settled behind my computer. His long hair hung on the keyboard, but apparently, he didn’t mind. His fingers flew skillfully over the keyboard. A real freak. After a few hours, he asked Diana to call the station to ask what time the last train to Arnhem was. Diana called and it turned out he only had five minutes left. She suggested we drive him there in the car and while she hurriedly put on her coat, she shouted from the hallway, “We have to leave right away.” Werner wasn’t in a hurry. In his own sweet time, he continued typing. He shut down the computer and calmly put on his coat. They made it to the train just in time.
The period with occupational therapists, speech therapists, technicians and computer geeks came to an end when Diana had to sign a receipt for the computer. Since then, we haven’t heard anything from anyone. The equipment is in perfect condition. There’s nothing wrong with it. However, the program is just not complete. Let’s say 95 percent is in order. The remaining five percent is what makes me constantly uncomfortable behind the computer because either the speech module can go haywire, or the entire program can get stuck. I’m always afraid of losing my entire text. I always compare it to a car. It runs fine, but there’s a button next to the turn signal suddenly makes the car zoom at two hundred kilometers per hour. Who dares to signal the direction then? And another thing. I prefer to communicate from person to person. It’s very simple: if I say ‘mu’ to Diana, she knows I mean ‘music.’ Computers???
It was quiet in Jan Boonman’s room. There was a sad atmosphere. John, Diana’s brother, paced nervously, Sandra sat staring at their wedding photo in front of her. René was in the kitchen, Jenny sat defeated on the couch flipping through a book and Koen, three years old and Anne, five years old, Jenny and René’s children, took turns climbing onto a chair next to the casket. “Grandpa, look!” Diana drove me as close as possible to the casket and bent my head forward so I could see better. For the first time, I saw the body of someone who had passed away. There he lay: Jan Boonman, Diana’s father. He had only reached the age of 65 and had always been perfectly healthy. A cardiac arrest had put an end to his life. He could have meant so much more to us. I felt the muscles in my face tense up. A title came to my mind: “Crying on the inside.” Never before had I felt such injustice. I was desperate and the emotions pounded against my skull. René stood next to us and, according to Catholic tradition, placed a string of beads in Jan’s hands. This is called a “rosary” and is always placed on a deceased body by Catholics.
The day before, everything had seemed so different. I was watching TV and Diana was cooking. Then John called to ask if Jan Bomman was with us. No one called him Jan Boonman, everyone said Jan Bomman, except for Diana and me. We called him Jean or JB, it was so easy. John said the neighbors had called because the curtains had been closed all day. Diana already had a feeling something was seriously wrong because she had been with Jenny all afternoon, so he couldn’t be there. “Then hurry up and go there,” Diana said, “and let me know immediately how it is.” John picked up René and together they found Jan. He looked as if he were asleep. No sheet or blanket had been moved. He had just passed away. René called Diana with the bad news. “No, no!” Diana exclaimed, bursting into tears. “My father is dead, my father is dead! I want to go there!” At that moment, I wanted to say a hundred thousand things to her and wrap my arms around her, but all I could do was sit still and watch. With tears in her eyes, Diana called my mother, but she wasn’t home. Diana realized someone had to come who could communicate with me easily so I could express myself properly. Priscilla was called and within a few minutes, Diana could leave (Priscilla is our helper and spends thirty hours a week with me. We get along well and communication is never a problem). Brenda had also come and my parents were already here. Still, it took a day for it to truly sink in for me.
The last time Diana let me look into the casket was the very last time I would see JB. The last time I had heard him was on Saturday evening, three days before his passing. Diana often called him. Just like that, often when she had a spare fifteen minutes or for something trivial. JB always told me which soccer matches were on TV and other little things like that. That Saturday evening, there was a power outage in Kapelle and we were waiting for the final of the World Darts Championship on the BBC. With a few candles lit, we chatted with JB for a while. This would be the last time we spoke to him. On the day of his cremation, I wore the Pink Floyd sweater he had bought for me in Rotterdam. He liked going to the market there and once took a stack of T-shirts and sweaters with prints for me on his own initiative. As a sign of appreciation, I insisted on wearing one of those sweaters that day.
The church was packed. JB was a deeply beloved person. Priscilla would take care of me that day because Diana had enough emotions herself. In the days between JB’s passing and his cremation, Priscilla had been a great support to me. We talked a lot. In the evenings, Diana would lie in bed with me. I didn’t know what to do with myself. After the church service, we set off in gloomy weather for the crematorium in Middelburg. The crematorium was located right next to the Pedagogical Academy and a teacher always made jokes whenever smoke came out of the chimney. This time, there was nothing to laugh about. Reluctantly, we went inside. In the main hall, Chris de Burgh’s “A Spaceman Came Traveling” was played and everyone found a seat. There were a few speeches and a piece from Mussorgsky’s “Pictures at an Exhibition” was played in JB’s memory. Alongside immense grief, I felt I should have said something. I wanted to express how much I appreciated, after his wife had abandoned him and their three children aged three, six and eleven, he had chosen his family and raised his children wonderfully. I wanted to thank him for everything he had done for us, especially in the past five and a half years.
He would often stay with us for a few days and take care of the garden and various chores. Whenever something needed to be done, JB was there. He would varnish the floor, help decorate the Christmas tree, fix a squeaky door, lay tiles in the attic and he always had something in his shed for everything. I might not have been the ideal son-in-law, but I felt his love and concern. Anyone who came after me was coming after him. I also wanted to tell him how much support he provided to Diana and how significant his role was in our lives. How much he meant to us.
During the final farewell, Jadis’s “More than meets the eye” played and I was working on a speech. I couldn’t keep my thoughts focused on reality. I constantly searched for words of praise. Even during the condolences, the ride to Jenny’s house, the meal. Days later, weeks, even months later, I was still giving speeches.
In the cemetery in ‘s-Heerenhoek, there is a special place where urns can be buried. The urn can stand in a PVC tube buried in the ground. An engraved tile measuring fifty by fifty covers the tube. Diana looked at it and choked up. She keeps things to herself. She, like Jenny and John, will have to find solace in the thought JB knew how much his children loved him. But that’s not enough, of course. She’s having a hard time with it but she doesn’t always show it. I was having a hard time too. Every time I see an older man, I think, “Why JB?” Every time I watch a soccer match, I tell him the score. Every time the phone rings, I think it’s him calling and every time the garden gate opens, I expect him to come into the garden.
On the TV, there is a figurine of an elephant with a baby between its front legs. This was from JB. Diana took it as a memento when his belongings were divided. It symbolizes exactly who JB was. Determined and caring.
Whenever I watch TV programs about breast augmentation, I immediately think of my wheelchair. Huh? I hear everyone thinking. Well, in the seating area of my chair there’s a gel cushion filled with… silicone. It’s nice and soft and comfortable. It’s there out of pure necessity. Without this cushion I could only sit in the chair for maybe an hour and a half. To prevent the silicone from hardening, the cushion is placed in a basin of warm water once a month. It’s kneaded and kneaded until all the silicone becomes supple again. When I first got this cushion the girls from BRC weren’t aware of it. After a while I started to feel a bit of pain in my tailbone. It got worse and eventually felt like my tailbone was on fire. I couldn’t bear it anymore. How much would my upper body weigh? Forty kilos? Fifty kilos? The full weight pressed on my tailbone, cutting off the skin underneath. It felt like someone was squeezing my buttocks with pliers. Joyce, the occupational therapist who gave me that cushion, knew what the problem was and since then the gel is always softened on time.
“I’ll do your cushion, have a bite to eat and then come to get you out of bed, okay?” Diana suggests. She’s always taking care of me. She has her father’s caring nature. I always want to be involved in the decision-making. She would never just wash me without consulting me. We always discuss it together.
The worst thing about a nursing home and Diana knows this, is you feel like a patient there. You’re outside of society, just a file, a number gets washed when the neighbour is done or when the break is over. Not being able to talk is one thing, but not being allowed to talk is a disaster. The most essential achievement of humanity is the right to free speech. Often, I think of the brave mothers in Argentina who demonstrate because of their missing sons and all the prisoners in the world who expressed their opinions. The extent to which I can express myself, even if it’s just to indicate my arm is not in a good position, depends on someone’s willingness to communicate with me. I strongly suspect most caregivers didn’t bother to engage in conversation with me. “Just wash him,” I heard them think, “he’s already labor-intensive enough.” The uniforms at Ter Bosch didn’t sit well with me. In the hospital, I found it normal and it didn’t bother me at all to see the nursing staff dressed that way. It would have been strange if they stood at my bedside in their everyday clothes. At BRC everyone wore their regular clothes and it would have been strange there if Alette had traded her sweater for a uniform. So at Ter Bosch I was once again faced with uniforms and I immediately saw it as a big downside. I also didn’t like the room where I could stay. An impersonal room in an old barrack. The only thing that added some color was the painting Wies had given me which I hung above my bed. When I left Ter Bosch for a day I was really happy, but when I had to go back again I was frustrated. The prospect of finally being allowed to go home helped me to keep my spirits up. Honestly with all my willpower, I can’t remember ever laughing there.
Diana dips her washcloth in the water and starts washing me. Meanwhile, little Juul jumps on the bed. He’s our white cat. He walks over me, licks my stomach and then lies down between my feet. Through the gap he managed to create in the sliding door Floyd waddles in. Floyd is the opposite of Juul, except he’s also a male. He’s smart, big, black and fearless. You can’t say the same about Juul. He’s a goof. Floyd jumps on the bed, sees his spot is taken and lies down on Diana’s bed. From a shelf next to my bed, a ghetto blaster plays the sounds of The Flower Kings with the beautiful ‘Stardust We Are.’ I see the curtains we picked out together. The lamp, the linoleum, the clock, the TV on the rails. Diana turns me onto my side. My eyes fall on the modern wallpaper and the fresh paint on the frames and door. I look at Stuart Nickolson’s face. On a bulletin board hangs a poster of Galahad I got with a CD. He’s their singer. Besides the poster, there are a few cards of Marillion and a bag of plastic gloves on that bulletin board. Diana turns me back. I feel like myself. We have it all figured out. Everything is perfectly arranged. Diana made sure she could work half days right away. It wasn’t easy, but after a few months it was decided she could work less. We got permission from the Home Care Foundation and the Employer Association to hire a private caregiver. Not someone who would be with us for only six weeks and then move on to someone else, but someone who would work for us permanently.
In Ter Bosch, Patricia worked night shifts and heard we were looking for help. One evening, she said she wanted to come work for us. She was 22 years old and as kind as can be. She explained how she wanted to combine her work at Ter Bosch with us and after a day of discussions, we hired her. She worked for us for nearly two years, but eventually she couldn’t handle it anymore. Her husband passed away when she had been with us for only a few months and since then everything changed. She moved, had a lot to do at home and had to do everything alone. She also ended up in the middle of a reorganization at Ter Bosch which meant she had to drive quite a distance to come to us. One Saturday she came to resign. She wanted to pursue a demanding study as well. Patricia had been seriously ill a few times and we thought it was a good idea to turn it into a job share. We had many candidates come for interviews through the employment agency. I found it a very strange experience: Dick, the boss. We hired Annet and Willy at that time. Annet was 22 years old and Willy was 52. They were both nurses and it was precisely the age difference that appealed to me. One week Annet worked and the other week Willy worked. Annet was excellent and I had a hard time when after six months she came to tell me she had been accepted for training at the psychiatric hospital. It was fantastic for her of course, but I struggled with it. Did we have to start the hiring process all over again?
The last candidate who came for an interview was Priscilla and my intuition immediately said, “That’s her!” She turned out to be the right person in the right place. Despite Willy’s excellent care, I had a clear preference for Priscilla, also because Willy didn’t communicate well with me and our worlds clashed considerably after a year. Willy left on her own because she found another job. After Willy left, we didn’t try to hire anyone else. Priscilla started working the weeks Willy used to work and with Annet we made an arrangement she would fill in during Priscilla’s sick leave and vacation if her schedule allowed. Diana goes to work with peace of mind. When she comes back the whole house is in order and I’m sitting comfortably in my chair. Priscilla does grateful work. The CD is almost finished and Diana is almost done shaving. Meanwhile, she turns on the radio, but it starts playing pounding house music so she turns it off again. Diana puts away the electric razor and asks me which CD I want to listen to. I feel like listening to “Searchlight” by Scottish band Runrig. It has the beautiful song “Every River” with the fitting lyrics:
All the ways of my life
I’d rather be with you
There’s no way
It always reminds me of Ter Bosch.
I made a tape of Runrig for my mother. I think she’ll like the emotional singing. I certainly do and this time, I don’t think I missed the mark. She resembles me quite a bit. I know her inside out and she knows me. When I see her hands, I think “Hey, those are my hands.” She does everything in her power to help us. We have a lot of support from her. I can sit without assistance for at most half an hour. There’s always a chance something might go wrong if, for example, I cough. My head can painfully tilt forward or backward, my arm can fall off the chair, or my foot can twist. There’s always something that can happen. The parasol can twist, or the CD can skip. My mother is often here; we can almost always count on her. If Diana wants to go out for dinner or to the movies, my mother is always available. A course, a late-night shopping trip, a visit to the doctor or physiotherapist, she’s there. She reads to me, we do a lot of lettering or we watch TV. A large part of this book has been transcribed by her.
We designated Tuesday afternoon as Diana’s regular free afternoon. She goes into town, visits her sister or something like that. Thursday afternoon is similar. Jeanet, Priscilla’s mother, comes over to read for a few hours. I enjoy listening to books by Stephen King. They’re thick books and because they’re incredibly suspenseful, I can keep my attention focused for a few hours. Diana can do something for herself during that time. I receive a lot of friendship from my Ligeia buddies Peter and Roel. Peter comes over every three or four weeks to keep me company for an evening. It’s always a great time when he’s here. Peter is a musician through and through and I love it when he sings a song for me at the top of his lungs. Sometimes he sits next to me and starts drumming on my chair, imitating various super drummers like Neil Peart and Mike Portnoy. The imitation of the leather of my armrest sounds fantastic and with his foot on the wooden floor, he has an incredible bass drum while he strikes imaginary cymbals in the air. Pss pss tsj tsj ks ks. Peter is a professional musician and plays at weddings and parties. He does it very well and always brings his agenda and mobile phone when he visits me.
Roel is a completely different type. I also greatly appreciate it when he comes. He has a calm nature and can keep himself occupied by listening to a CD on the couch. Peter and Roel always come during the week. If Diana wants to do something on the weekend, she calls my mother or my brother. On a warm summer evening Diana wanted to go to a pop festival and Marco and Silvia were in the garden to keep me company. Marco told me a funny story. The doctor who was on duty on the night of my stroke had been our family doctor for years and was therefore well-known. Marco had heard him say to my mother, “You raised him well. When I tried to shake his hand, he used his at that time good left arm to hold his right arm and offered me his hand.” I didn’t know that myself and I enjoyed hearing it from Marco. I like it when people come to visit me. After the summer, Diana is taking a break with Brenda. Five days in Malta or eight days in Lanzarote, she deserves it. My parents will stay with me and together with Priscilla, they will do their best to take care of me. In the evening, Wil will help me get into bed because my mother doesn’t have much strength. Wil is Brenda’s husband; he used to be a nurse and has been Diana’s colleague for years. He lives about three streets away. Recently, Wil and another colleague completely redesigned the garden. The garden used to be JB’s domain and it’s not always easy to ask other people for help. The willingness is there, but it’s not nice to have to ask all the time. Diana feels burdened quickly.
I’m fully dressed and Diana places the lifting mat under me. She lifts me up and takes me to my chair. She puts on my shoes, fastens the chest strap and goes to check if there’s any mail. Later, she comes walking through the kitchen with a stack of letters in her hand, laughing. A bank statement, two letters from our accountant, a brochure and an envelope with a stamp from The Cage. Diana takes out a booklet from the Arena fan club from the envelope and shows it to me briefly. “Your mother is coming later and she’ll have something to read to you,” she says while brushing my teeth. “By the way, can you feel your pillow?” she asks. Unfortunately, I have to answer “no.” Diana sees I want to say something. She sits on the bed and I say I only feel the pillow when it’s not good.
10. In The Patient Lift
“The flying doctor himself” Harry joked as he turned the crank of the patient lift. I had seen such a device before at Diana’s workplace, but this one was different. First Harry placed a mat underneath me and then he attached four straps to something that resembled a hypermodern bicycle handlebar. Two straps were placed next to my shoulders and two between my legs near my groin. Lotte, one of Harry’s colleagues, held my head to prevent it from hanging off the mat. The lift reached its highest position and carefully Harry and Lotte brought the lift towards my chair. I could catch a glimpse of the undercarriage. The forks you see on pallet jacks used to move crates of fruit formed the movable part. It seemed impossible to tip over. Harry slid the forks under my chair, turned the crank and I descended into my seat. “Perfect” Harry said.
This was much better than all the tugging to get me out of bed. Almost every day I left my room in the Neurology ward to spend an hour in a wheelchair going to the meeting room of the department or to the hospital cafeteria. Diana would dress me first and then press a button to summon a nurse to put me in the chair. After a few minutes someone would arrive. Diana slid her arms under my armpits and crossed her hands to grip my forearms while my head rested against her shoulder. The other person held me under my knees and together they lifted me to the edge of my bed. Then came the worst part. Diana counted down: “Oooone, twooo, oomph.” With combined strength I was lifted. The joints in my shoulders, elbows and pelvis took a beating, especially because one person exerted much more force than the other. I felt like a sack of potatoes. The only consolation was being able to see things from a different perspective. I let it happen and never got worked up about it because I knew all too well this would eventually change.
Harry loosened the straps and removed the lift. He checked if I was positioned properly and told me he had just come to test the lift. “Damn” I thought” is the tugging going to continue?” Harry and Lotte laid me back on the bed and left the room with Harry pushing the lift in front of him.
At the local healthcare organization in ‘s-Heer Arendskerke Diana was able to borrow the same lift for when I was home on weekends. The mat was slightly larger, allowing her to assist me in and out of the chair on her own. On occasion, René had placed me in my chair without the lift. He had wedged his arms under me and like a groom carrying his bride over the threshold brought me to my chair.
They also had the same lift at BRC. Nobody else needed it except me, so I could always use it. Thankfully, the tugging had come to a definitive end. However, not everything was perfect. The mechanism to which the straps were attached could rotate. The nut in the center, which held everything together, had a soft piece of plastic for safety, like a bumper. I often bumped into that thing when I had to cough and I was always afraid of hitting my face against the tubes of the suspension mechanism. The damage would have been unimaginable. A few broken teeth, a pierced eye or a broken nose. A shattered eye socket or a damaged esophagus. Nothing ever happened, so I won’t dwell on that any further.
An amusing incident occurred when my parents came to stay at BRC one time. BRC was divided into pavilions. I was in Pavilion Three, which was called “The Cauldron.” On weekends most children went home and the remaining children from Pavilion Three and Five were combined. During a weekend when I wasn’t going home, my parents came to stay and they were given the entire Pavilion One for themselves since it wasn’t in use. Such a pavilion had considerable dimensions and could be compared to a school building in a village. It was luxuriously furnished and modernly decorated. On Saturday evening we were watching TV when Lianne came to fetch me to take me to bed. I went with her back to Pavilion Three and my parents who wanted to see how I was brought to bed with the lift followed. Lianne normally worked in Pavilion Five and had no experience in getting me out of the chair. Wies had written down every step on a piece of paper. Lianne carefully studied the points from behind her owl-like glasses. It seemed she felt quite scrutinized by my parents. She cautiously followed the instructions on the paper. When she was done (or better said when she thought she was done) she began turning the crank. I felt myself going up and at the same time I felt an increasingly heavy sensation in my lower abdomen. My father started laughing and my mother exclaimed “Oops, his chair is still secured!” Lianne took a step aside and then also noticed something was amiss. She lowered me and checked if the mat had gotten stuck somewhere. She couldn’t find anything, fiddled with the straps a bit and turned the crank again. For the second time I went up with the chair. I laughed hard and my father couldn’t stop laughing either. It was a hilarious sight to see me hanging there while the chair dangled beneath me. “Did you release the belt he has under his sweater?” my mother asked Lianne who had put me back on the ground. They lifted my sweater together and the buckle with “press” on it became visible. The belt was undone and for the third time I went up. This time everything went smoothly and when I was safely in bed my parents came to say goodnight. I looked at my father and he said “Oops, there he goes, including the chair, up in the air!” Joyce, the occupational therapist, knew I was a bit afraid of coughing and hitting my head on the suspension mechanism, but overall the lift worked fine.
One afternoon Joyce came into the living room of my pavilion with a man in a three-piece suit. “This is Mr. Durand, a representative from Moliften Nederland. He might have a better lift for you. Would you like to come with us?” Joyce asked, calling Wies over. We all went to my bedroom. There stood an attractive-looking lift next to my bed. The bottom part resembled the lift I used every day, but the rest looked completely different. A tall upright red pole had a supporting arm at the top. About three-quarters of the way up the pole, there was a crossbar with another supporting arm. The supporting arms were thickly padded and I found it odd I didn’t see any hooks for the mat to hang from. “There must be a mat included” I thought. “I can’t possibly have to lie on those supporting arms.” A few minutes later everything became clear. Mr. Durand took a mat out of a bag and handed it to Wies. As usual she placed it beneath me. The mat had long loops and Mr. Durand threaded one loop through another at my legs. He rolled the lift under my chair and pressed a button on the control panel. The lift descended. Mr. Durand slid the loops over the supporting arms. “Aha” I thought, “so that’s how it works.” He pressed the button again and the lift went up. I watched as the supporting arms disappeared from my view, the loops tightened and I went up in the air.
“This is ideal” I thought. “Now I can finally cough without fear.” Joyce stood behind me just like Lotte in the hospital holding my head and Mr. Durand mentioned there were also mats available with a headrest. When they laid me in bed, Wies and Joyce expressed their admiration for the lift. They didn’t need to ask me anything; they could see it for themselves: this was the perfect lift for me!
It took a few months before the lift was actually delivered to us. In the meantime I had to make do with the lift used on the Ter Bosch ward. On BRC I was the only one using the lift but it was different at Ter Bosch. There was I believe, only one lift for the entire Ter Bosch, or at least that’s how it seemed. Often the caregivers would be gone for fifteen minutes to fetch the lift from another department. I could hear it coming from miles away. Some idiot had carpeted the hallway not in the lengthwise direction, but in the widthwise direction with linoleum. There was a seam every two meters and it had been filled with a strip. Kedeng, kedeng, kedeng, kedeng. Later Guus Meeuwis had a hit song that sound like that, but while everyone was thinking about a train I was thinking about the lift at Ter Bosch. The flooring would have been done differently by the carpeting company where I used to work. I had only been there for half a year and yet colleagues would regularly visit me in the hospital. Even now, I receive a Christmas package from them every year and they stop by. They haven’t forgotten about me.
On my first day at Ter Bosch I was lifted into the lift with a much too small mat. They had a solution for that. The next morning two caregivers came to wash me. After they had washed me they placed the mat underneath me. One of them turned the crank and then I saw what they had done. I froze in fear. The loops that are normally supposed to be between my legs were placed on the outside of my thighs instead of going through the middle. When the loops are applied through the middle they act as a securing mechanism, but now I could easily slip out of the mat. I found this so clumsy and irresponsible my aversion to Ter Bosch grew even stronger than it had been after just one day. What stupidity. What bothered me the most was they did this deliberately, supposedly to create more space in the mat. Relieved I sat back in my chair. What a fright!
Now for five years I have been safely lifted out of my chair with the Molift. Officially a trip to bed is called a transfer, but I prefer to call it “relocating”. The term transfer reminds me of football players. I have been to the hospital a few times for check-ups. For example when X-rays needed to be taken I would be lifted out of the chair and placed on the X-ray table in the old familiar way. For once I didn’t mind the pulling and tugging. I knew a good lift was waiting for me at home. I always see the lift as an aid and I am happy every time I sit in the chair. I say even though I know the Molift is optimal. It can’t get any better, according to the flying doctor himself.