26. Background Magazine

On February 23 1994, I received a letter that would have a big impact on my musical life. At the time, I had my feet in a basin of soda and when Patricia read the letter to me I spasmed with joy so hard I kicked the basin across the bedroom. The letter was from Stephan, the older brother of Michiel van der Ven, a guy I had met through Ligeia Lie at the Marillion fan club day. Michiel and Stephan had started a magazine called Background Magazine, which featured various articles about progressive music. We had stayed in touch over the years. In that letter Stephan asked me if I wanted to write reviews, critical articles about CDs, for his magazine. A few months earlier, Roel had come over one evening and read Background to me. There was a survey in it we filled out together. They were giving away a CD to one of the respondents and I was the lucky one. When Stephan sent me the CD back then, there was a accompanying letter asking me to let him know what I thought of it. I probably sent a nice note in response.

While Patricia mopped up the spilled soda water, I thought about various practical aspects. Background was in English and I didn’t feel confident giving my opinions about CDs in English. Someone would have to translate my reviews…

I also wanted to write under a pseudonym because Background had already featured Ligeia Lie a few times and I wanted to avoid the readers knowing who I was. Additionally, I came up with a bunch of abbreviations because it seemed cumbersome to spell out names and titles in full. The fourth row, which Ans and I had filled with various punctuation marks in the hospital, had to be brought out again and I would need to use the fifth row with numbers more than ever. That evening, I composed a letter to tell Stephan I would love to write reviews for Background and suggested he call Diana. A few days later, he called and we discussed everything. He said he would translate my reviews. We also made an arrangement for him to come by and hand over the first CDs.

By that time, I had come up with a good pseudonym: ‘Dirksen de Raker’. Dirksen is the nickname Diana always gives me. De Raker refers to the time when Roel and I would go to café La Strada on our free Friday afternoons. The day before, we would always ask each other, “Are we going to hit them hard again tomorrow?”

My first review was a bit of a struggle, but eventually, I managed to write a decent article. Patricia recorded the letters in a blue notebook. When my first review was published in Background, I was over the moon with pride. That day I was being taken care of by Marian, the district nurse. She helped me shower along with my mother. When Background arrived in the mail, I was eagerly curious to see if my review was in it and in between getting dressed Marian read the review to me. My mother showed me the review carefully. “All right!” I thought when I saw Dirksen de Raker. “I’ve accomplished something good.”

I have already written over 130 reviews. That averages out to about one review every ten days. I listen to each CD about five times. In the meantime, I form an opinion and gather all sorts of information about it. Then it happens. At any given moment of the day I start formulating. I weave various sentences and interesting facts into pieces of text I repeat in my head a hundred times, I change a hundred times. I keep listening to the CD and its individual tracks. I spin some CDs around twenty times. Once I have a good start I start writing the review. Depending on the importance of the CD I let the review reach its length. Usually, for a CD I find worthwhile it takes about three or four writing sessions of around 125 words while for a mediocre CD I write it in one go.

The notebook is already completely filled. I have been working on my second notebook for a while now. It’s a thick notebook with a cardboard cover. From there the reviews are transcribed neatly. Along with the CDs Diana sends them to Jerry, a few at a time. Jerry is the central point of collection for Background. Nowadays he also translates my reviews. Stephan has less free time since he has a permanent job, so he has delegated some tasks. However, he still sends the packages with CDs to the reviewers. I always enjoy seeing them arrive. It gives me the feeling I am not just on the sidelines. Through reviewing I feel like I am included, I haven’t had to throw away the knowledge of music I have gained over the years.

A few chapters ago I mentioned the need for recognition. Well, I truly make myself heard in Background. Although Background is not that big I still feel like I can make a difference for others. In my reviews I always write what I would want to know if I were reading those reviews myself.

I used to call the saxophone the outlet of the soul and in a way I see writing a review as the same. In addition to providing a lot of information, someone reading my review, who by now knows my preferences, should be encouraged to get to know that particular CD or not. It should create a stimulation without losing objectivity. To show what I’m working on, I have selected a review and included it here. In English, because Background is also in English. The review is about an unknown Polish band that has released their first CD. That is also the goal of Background: to give attention to bands that need it. They can count on me!

27. Personality

Personality is formed in the frontal part of the brain and fortunately that part was not affected by the brain infarction. The damage occurred in the back. My character, knowledge, memory and taste in music or movies are still exactly the same as before. “You haven’t changed a bit” my mother said. While my personality may still be intact it would have been hardly noticeable if I had lived in a nursing home. It is precisely the reason I live at home and receive loving care that my most important character traits flourish. I can laugh, I’m usually cheerful and upbeat, optimistic and approach everything as positively as possible. It’s a mutual interaction. It’s not good for Diana to have to look at someone with a gloomy face all day. Diana deserves better. I also benefit from Diana caring for me with a cheerful face. Of course there are moments of splashing, which relationship doesn’t have those, but after a few hours we’re back to being great pals. Humor is often the best medicine. Not everything can be fixed with a joke, but still. With a smile you can conquer the world.

Having a friendly face often makes life much easier. Nuno, the son of Roel and Marijke, has a very friendly face that wins everyone over. The laughter in his eyes.

John Wetton wrote a beautiful song about it. It’s about someone whose smile has disappeared from their eyes. I truly find the live performance of that song on the Asia album ‘Live Mockba’ to be of great class. ‘The Smile Has Left Your Eyes.’ John Wetton sings as if it comes from the depths of his soul. Every time I hear this song I inevitably think back to the week when the smile had also vanished from my eyes, the week when I lost all joy for life, the week when my entire existence seemed to be collapsing.

It started on a Monday morning. While showering I couldn’t hear very well because some water had gotten into my ear. It happens sometimes. Just a matter of tilting my head and it usually runs out. Except that morning. “Cotton swabs,” I signaled. “Do you want me to clean your ears?” Priscilla asked. I could barely understand her. She took a couple of cotton swabs and gently cleaned my ears. It didn’t really help. Priscilla laid me down on the bed and tried again. There seemed to be a slight improvement. “Better,” I let her know. “Later when you’re in your chair I’ll take another look, okay?” she asked. In the chair there was some blood on the cotton swab. I must have imagined it was better. ‘Blood?’ I thought, ‘that’s not good. I’m on blood-thinning medication so it won’t clot easily. This is a disaster!’ Once in the living room I started to worry more and more. I had hardly enjoyed the CD’s I had received from England a few days earlier. I had planned to listen to the silver discs that morning. That didn’t happen. I could only hear the music partially. It felt like I was in a swimming pool. Reviewing CD’s was out of the question. Stephan wouldn’t have any use for a partially deaf reviewer.

Priscilla called Doctor Xang. My mother read a passage from the IO Pages and I could barely understand her even though my chair was practically next to hers. Diana had also arrived home by then. Doctor Xang examined my ear with a light and found a small wound in the ear canal that was bleeding quite a bit. He let Diana take a look as well, told us the blood would clot within a few days and then I wouldn’t have any more problems because the clot would naturally come out on its own. I had never doubted his expert judgment before, but this time I was convinced something more serious was going on. In the morning I even imagined my eardrum was coming out or something internally had been damaged. Something as simple as a wound seemed a bit too easy. A few days later there was little improvement and in fact something was pressing against my eardrum, causing me the most discomfort. I was starting to believe the doctor had been right all along and that there was a significant blood clot in my ear. I grew grumpier with each passing day. On Saturday Diana called Doctor Xang to inform him the blood clot was still there and I had the grumpiest face in the whole world. We agreed the doctor would come by on Monday to flush out my ear. I felt great joy when I felt the blood clot pop out of my ear that Monday afternoon after Doctor Xang forcefully sprayed water into it. I had my normal hearing back. The smile had returned to my eyes. Immediately, I listened to one of the new CDs from England. It was beautiful and I had worried for nothing.

Over the years some aspects of my personality have changed. Not necessarily due to my brain infarction, but more indirectly as a consequence of it. Changes I attribute to the limitations I face as a disabled person and the constant need to maintain my self-worth. In the past I was someone who didn’t pay much attention to details, but now, thanks to Diana as well, I prefer to live a structured and regular life. Those who knew my old bedroom at my parents house know what a mess I was. Everything was in chaos. My desk was the worst; it was covered with a huge pile of books, folders, notebooks and so on. I was the only one who could navigate this organized chaos and find everything without a hitch.

Since I can no longer reach for things or even point to them I always want to know where something is placed. I don’t like it when people have to search for my things. I want to help them by indicating, for example, that something is in the left cabinet of the sideboard or next to the television. It’s important to me my music-related items are systematically organized. My CD’s are arranged alphabetically, my vinyl records are in order in crates on the upper floor and I have my own drawer filled with various items such as the IO Pages, Wondrous Stories and my reviews. All my Sym Info magazines are stored in suitcases and my cassette tapes have colored cases. The latter is quite handy; otherwise everyone would be searching endlessly. Here’s how it works: if I want to listen to a Pulsar tape I indicate “PU.” Diana (or someone else) retrieves the folder where all the tapes are listed, opens the “P” section and finds the name “Pulsar.” There it is: Pulsar Halloween (red). She can leave most of the tapes untouched; she only needs to search in the box of red tapes which is not a problem. Ronald clearly wrote the name on each tape so among the thirty red tapes the one from Pulsar is easily found. It’s a handy system that saves a lot of effort thanks to a few packs of origami paper. I’ve thought about it for a long time. I’m not obsessive about details, but a certain level of neatness cannot be denied.

It’s not just for my own benefit; it’s primarily meant to make things as easy as possible for others. Everyone benefits when I live in a well-organized environment. No more mess like in my old bedroom.

When I was still in that hideous wheelchair I hardly paid attention to my clothing. Faded T-shirts and sweatpants defined my outfit. I did have a few nice sweaters, but they were marred by a broad safety strap that ran across my chest. In Ter Bosch all my clothes had to be labeled with my name. It wasn’t good for my self-worth. It made me think of a prison. Everything changed a month before I was finally allowed to go home. Someone from De Kern came to our house to deliver the long-awaited wheelchair that had been modified by them, which meant I would no longer be transferred from the ugly one. At the time I spent four days a week at home and three days in Ter Bosch. The staff there told me how happy they were for me I finally had a beautiful wheelchair and how sorry they felt for me when they saw me in that ugly one. The girls at Ter Bosch were okay, for the most part. It was the nursing home itself I despised. The workload there was abnormally high. They couldn’t provide me with the intensive care I actually needed. I hope never to return there again.

The wheelchair I received from De Kern (the one that would later have its backrest break) looked magnificent and each day my self-worth increased. It had a black faux leather upholstery and beautiful star-shaped wheels. During the days I was at home I wore well-groomed modern clothes that matched my wheelchair. Diana was afraid if I wore those clothes in Ter Bosch they would get lost or fade.

From the day I started living at home clothing with labels became demoted to nightshirts or, even stronger, “cleaning rags.” I want nothing to do with them anymore. At some point Diana came home with an advertisement from a company specializes in adapted clothing for people in wheelchairs and since then I’ve almost exclusively worn jeans. We want me to appear as normal as possible. When I buy a new sweater it always goes to my mother first. She sews a few pockets into it to keep me warm and makes two notches under my armpits at chest level, so the unsightly safety strap can be hidden under my sweater. I still have a few photos from the time when the strap used to go over my clothes. It’s an eyesore pushing me further into the wheelchair. Now it looks like I could get up from the wheelchair at any moment, or at least that’s what my mother says.

Every five weeks Lia, the hairdresser, comes by. She is the wife of the bassist from Blubber de bie and visits her clients’ homes to cut their hair. Having a normal hairstyle is often overlooked for people in wheelchairs. Just think of all those crooked bangs. Although there isn’t much to trim at my hairline, I still want to look dignified. Speaking of dignity, my appearance is slightly disrupted because there’s always a napkin under my chin. You see, I often cough and sometimes a string of saliva drips from my mouth because I have difficulty swallowing. The napkins are made of fabric because otherwise there would be paper lint sticking to my chin, especially in the evenings when stubble grows on my face. From experience, I’ve seen people who didn’t know where to put their wet tissues and would just stuff them next to my legs. “I’m not a trash can,” I thought. Diana has dyed most of the napkins black so they don’t stand out as much against my clothes. I got the idea when I saw a singer with a black arm sling in the Sym Info magazine. It always takes a moment for me to swallow when I see the napkins flapping on the clothesline. It’s a strange sight.

Miraculously I’m never depressed (except for that one time with my ear). It seems to be quite common among people who have had a brain infarction, but luckily I don’t experience it. What does concern me is the external Dick is starting to differ more and more from the internal Dick. “Turn,” the unsympathetic one says curtly. “Could you please turn my wheelchair so I can see the television better?” I think with a smile. Hopefully people can see beyond that authoritarian, indifferent, tactless egoist and recognize a perfectly normal person resides in this body.

28. Going To Bed

Diana always likes to go to sleep early and I always stay up late. This has never been a problem because of the television on the rail. It doesn’t matter to me whether we go to bed at nine or eleven o’clock. I don’t tire myself out during the day and can potentially sleep in every morning (although I never do). Many evenings I stay up watching TV well past midnight. Sometimes I doze off around eleven o’clock and doze until I wake up at seven o’clock to the alarm, but usually five to six hours of sleep is enough for me. Diana can sleep through the television sounds and within five minutes, she’s already in dreamland. She deserves a medal, in my opinion.

The bed where I always lie so comfortably is the favorite playground of Koen and Anne. When Jenny and René come to visit we often play a cartoon on the TV on the rail which Koen and Anne can watch from my bed. They love it and Jenny and René can enjoy their coffee undisturbed. For the children the fun part of my bed is it can go up and down. I’ve never seen their faces when Diana presses the control button, but I’m sure they light up with joy. What I think they also really like are the safety rails on either side of the bed. They’re covered with thick padding making my bed like a sort of box. They give the bed a protective, secure and intimate feeling. They mark off a specific area. An area that brings back memories of the many times when my camping buddy Carlo and I would lay all the seat cushions from the caravan in a large square around us to build our own fort. Recently I saw Carlo on TV. He has become a famous keyboardist. On an organ he accompanied Gary Brooker in the world hit “A Whiter Shade of Pale.”

The safety rails are meant to prevent me from falling out of bed. I’m so afraid of that, so afraid. Actually the word “afraid” doesn’t fully capture it. “scared” is a better word or “fear.” I always shudder when I see even just a one-meter drop. Even though Diana says she’ll always stop me in time, the feeling of depth already frightens me. Sometimes I wake up trembling in the middle of the night and a plaintive whimper escapes my throat. In my half-asleep state I imagine the rail is open. In the dark I can’t see the rails and I only calm down when Diana turns on the light so I can see for myself that everything is fine. What I also think is I’m lying on a bed that’s not much wider than myself, a bed where I can easily slide off with the slightest coughing fit. These feelings of fear are there because I’m completely dependent on someone else. I need to be able to trust someone 100%. The first thing we taught Patricia, Annet, Willy and Priscilla is to make sure the rails are closed when they leave my bed. I also have trouble watching TV programs that involve heights. It’s strange I hardly had a fear of heights in the past. I worked for a while with someone who installed blinds. If I didn’t have to work at great heights I would climb the ladder without trembling knees. Nowadays I get extremely anxious when I see the acrobatics of a circus performer hanging from a trapeze in the peak of the tent or when I see someone climbing across a ravine on a rope for a thousand guilders.

When we still lived in the apartment Floyd always played with the birds that flew along the clotheslines on the balcony. He fell down three times. We lived on the third floor. For Floyd, it’s a piece of cake to balance on the rail while I receive my tube feeding. He’s always there, sitting on the rail and it always reminds me of how scary it was when he used to try to catch birds.

In the hospital, the safety rails didn’t have thick padding, so several times after a coughing fit, I hit my head hard on the metal bars. In the last few weeks regular pillows were placed next to my head, but it didn’t work well. At BRC they wanted to improve it immediately. The technical department was called in. One afternoon when Alette and Lilian, the intern, were putting me to bed someone in a work coat knocked on my door. He came in and leaned two enormous yellow contraptions against the wall. “I cut two strips off a mattress with an electric bread knife. Try if this works for him,” the man said. “Let me know.” He gave a thumbs-up and closed the door behind him. “Mr. Briene made this for you,” Alette smiled barely able to contain her laughter. She showed me one of those yellow contraptions and burst out laughing. “Quite thick, huh, Dick?” Lilian came to the other side of my bed with a similar contraption. It was a ridiculously funny sight and all three of us couldn’t stop laughing. “Let’s see if you fit in between” Alette said, tears of laughter streaming down her face. They placed me between the contraptions and Alette asked Lilian “Do you have mustard for this hotdog?” It looked absurd. “The hotdog principle by Mr. Briene,” Lilian roared. “We’ll have to tell him!”

At BRC I had a great time from the first day I was there. Currently BRC, or at least the staff, has merged into a large organization. That was already happening when I was there. So, I’m actually one of the last of the Mohicans. It’s a shame because I would have liked to visit the pavilion where I lived for seven months one more time. I went there initially to find a proper means of communication. It didn’t quite work out, but I left with effective adjustments and a lot of good memories. I couldn’t have been in a better place.

When Diana puts me to bed in the evening she’s always done within fifteen minutes. Although she’s used to it everything still goes smoother, even if she probably doesn’t realize it herself. The faster the better. The last thing she does is put eye drops in my eyes. Three times a day, my eyes are moisturized with what they call “artificial tears.” It sounds absurd, but I don’t blink enough. To prevent my eyes from drying out they are kept moist with those artificial tears; the night can begin.

Something that has led to a lot of misunderstandings in the past and is still difficult for Diana is I sleep with my eyes open. “Is he asleep or is he awake?” It’s hardly noticeable, only I am aware of it. Diana always does her best not to wake me unnecessarily. I do see her walking around the room quite regularly for a pee or something and I notice how she tries to do it as quietly as possible while I watch her wide awake. I have made a pact with myself when I lie awake at night ,which used to happen often, that’s when I let the less pleasant thoughts come and go so I have the day to think about enjoyable things. If I contemplate my fate I prefer to do it during the nighttime, so nobody is bothered and not when I see Priscilla’s friendly, kind face in the morning. I wonder what purpose it serves to worry during those moments. I prefer to fill my thoughts with reviews, letters to Ronald or just daydreams.

It’s in my nature to focus as much as possible on the things I can still do and not mourn too much over the things I had to let go. I am someone who wants to make the most of what I have. Optimal use of the possibilities. My whole story can be summarized in one question: how livable would my life be if I didn’t live at home? That determines everything, really. I still look forward to each day. I have my tricks for that. I make sure I have something to look forward to every day.

Currently, “home care” is a hot topic in politics. Newspapers often write about it and television gives it a lot of attention. It’s a timely subject. I hope my story can contribute in some way. It underlines the importance of personal contact. If Diana hadn’t made the decision to take care of me back then, I would have fallen through the cracks. That’s what my nighttime thoughts often revolve around. I also often think about the cause of my stroke, Mr. Cholesterol, the silent killer. A silent killer, that’s what it is.

For years, I had been struggling with a genetically high cholesterol level. I had my blood checked a few times a year to monitor the levels and ironically, a month before my stroke, I had my blood tested. The level was at 7.1. It had never been that low before. I often wrestle with the question of whether I was unlucky the silent killer struck so devastatingly or if I should consider myself lucky to still be alive. I always come to the same conclusion: I’m glad I’m still here!

Afterword

29. Let It Go

On television I saw Gianni Romme fulfill his dream by winning two gold medals in the five and ten-kilometer speed skating events at the 1998 Olympic Games in Nagano. When my story is standing as a book on the shelf my dream will also have come true. It has been a long intensive period of more than eight months of blinking and thinking which I compare to walking around the world on foot. Fortunately there were always people on the sidelines cheering me on and that’s what I needed. I move step by step, write letter by letter. What started years ago with “quasar” has developed into a whole story of thousands of words.

Every day my mother came by to transcribe a few sheets of scribbles. Not only my mother but also Diana, Priscilla, my father, Peter and Roel have taken note of my thoughts, but I owe the most gratitude to my mother.

I had about two sheets of scribbles transcribed per day. Then my thought tank would be empty and Diana would neatly write it down in a notebook. I started in May ’97, but after a few weeks I put a stop to it because I needed to convince myself if this is what I really wanted. During the summer months I kept thinking about it. In August I made the decision and picked up where I left off. From that moment on I worked on the book every day for a few hours straight and I already had a rough idea of the story’s content.

The working method was based on three pillars:

1. What do I want to say?
2. How do I want to say it?
3. The act of transcribing itself.

Fortunately I have a great memory. I made grateful use of it. Certain fragments I could recall exactly like the first time I went to Jan Florusse’s place to play the saxophone or the time Lianne lifted me with the chair and all in the patient lift. It seems people with locked-in syndrome develop a large memory capacity.

Through daily transcription and writing reviews I have learned how to remember pieces of text effectively. For example, I know it’s crucial for the piece I did yesterday to seamlessly connect to today’s, meaning I have to imprint the first paragraph precisely in my mind every day. For the rest I can often work with a set of keywords. As long as I know what I want to write.

The day I handed my first notebook to Marijke was a milestone, a joyful moment. Marijke, Roel’s wife, Peter’s sister, types up my entire story on the computer. The first notebook contains thirteen chapters which amounts to 150 pages and translates to 75 computer pages.

I can say I have fully accepted the consequences of my brain infarction and Diana has too. We’re doing well mentally. We’re quite content. However, through writing this story I have learned a lot. It has organized my thoughts, made me realize once again how incredibly valuable Diana is to me. I have learned the importance of getting along well with our caregiver, how much I value my friends and how wonderful it is my parents come to visit us, we can always count on their help.

My story is nearing its end, the third notebook is almost full. I have filled the notebooks with 350 pages. There are still millions of things I would like to share. Like the time someone tried to brush my teeth with an electric toothbrush and I bit it into pieces. Or the time I had the hiccups and they thought there was a dog on the hospital ward. Or the bizarre date that kept appearing on television when Lady Di had her accident. August 31, 1997, the day I had my brain infarction six years ago. I would like to tell so much more, but as I often think, “Oh… let it go.”

30. (Continuation) Twenty years later

Recently my son Owen posted a set of photos on Facebook from the visit he and his girlfriend made to Paris, the city of love. They looked great and I was proud of them. “Je t’adore,” I texted them on the morning of their departure. It was more than genuine. Owen deserves to be extraordinarily proud. He’s doing well, so to speak. As a welder he earns a decent salary and hard work is his motto. He frequently travels to Belgium or northwestern France to complete jobs. Nothing is too much for him and I’ve known this helpful attitude since his birth. He has always been the “I’ll do it” kind of guy. He was the one climbing the highest tree, the one skating the fastest down the street. I loved it when he piled all sorts of things from the house on me, like a basin, the couch cushions and the square pouf, with the yellow children’s chair on top, where he would sit. He was easily a meter taller than me. It was actually irresponsible what I let him do. He always had the greatest fun when he stood on the footrests of my wheelchair and jumped up and down so vigorously my head whipped in all directions. When Diana saw that we both got scolded. I let him do anything. However I was always afraid he would stick his fingers in my mouth because I have an involuntary biting reflex.

On September 22, 1998, Diana and I got married. It wasn’t a grand celebration. Only a handful of family members witnessed us saying our vows, Diana verbally and me with my eyes. Afterwards, we had drinks at our home and we had ordered a large platter of snacks. In fact, we did it for our future child. Moreover, the baby was already comfortably nestled in the womb for a few months. We already had a name: Ewa if it was a girl, Owen if it was a boy. When Diana was heavily pregnant we had to go to the hospital once. I had a severe eye infection and because an antibiotic ointment wasn’t sufficient, I had to undergo surgery. The doctor cut it open and scooped out the yellow delicacies. You have to endure certain things as a locked-in person. It must have been a comical sight to see Diana with her big belly walking behind me in the wheelchair with my eye covered.

Our marriage lasted eight years. We were overjoyed when Owen was born and made every effort to give him the most carefree upbringing possible. When I look at photos from that time, I see nothing but a happy child who feels good. We really managed that. However, behind the scenes, there were quite a few issues and in the spring of 2006 things escalated to the point Diana and I decided to get divorced.

Faster than expected, Diana managed to secure a house through the housing association and that summer she moved in with Owen. With the help of neighborhood care and several other caregivers I did my best to create a working schedule, but I was often alone and usually went to bed early. In the meantime I had joined a care organization and before the year was over I was surrounded by at least ten caregivers.

A lot changed for me. Not only did I have one or two caregivers coming over for about fifteen hours a day, but I also shaved my head and grew a beard, to great success. I also decided to see what effect it would have if I let beer flow through my feeding tube. Eventually it was arranged the caregivers would work directly under me, bypassing the agency. I felt as free as a bird. Nothing “Bourgondisch” was foreign to me and every day I stuffed my mouth with all sorts of indulgent treats like lasagna and macaroni. I couldn’t swallow, but when my mouth was full enough I would naturally have a swallowing reflex. It never went wrong and I actually enjoyed it when I had a coughing fit. It felt like I was clearing my lungs. Well, that wasn’t the case. One evening I was already short of breath and the next day I constantly struggled to breathe. I called the doctor, my oxygen saturation was at 82, and I was rushed to the hospital with sirens blaring.

I spent two weeks in the intensive care unit in Vlissingen with a pneumonia that could be raised to the power of three. Under my bed, as my mother told me, there was a big jar with the mucus they extracted from my lungs. I was incredibly sick and on top of that the medications had me as high as a kite. I had the strangest hallucinations and barely registered an attack had been carried out on our queen. It was April 2009 and I turned 46. I felt 96 and thought it was appropriate to ask a doctor if I could ever have sex again. After two weeks I was transferred to the hospital in Goes where I could recover on a regular ward. I promised Owen I would never eat anything again.

In the following years I still experienced respiratory problems regularly. Actually, most locked-in individuals I know have that. I started using an oxygen mask at night and later on I also wore it during the day. In late 2013 I was admitted to the hospital a few times in quick succession and I was advised to have a tracheostomy tube placed. It’s an opening in the airpipe with a tube through which the lungs can be easily cleaned. I was also advised to use a ventilator at night. I had pneumonia one more time. It was a severe one and they even feared for my life. In the years that followed everything went great for me. I feel as fit as a fiddle, have a fantastic blood circulation and sleep ten times better. However, organizationally, it’s quite a challenge. All my caregivers had to obtain the necessary certification to handle the equipment. In that regard, I’m well taken care of and can keep going for years.

Diana, Mom, Priscilla, Marijke, Ernst-Jan, Peter, Roel, Thijs, Dad, Petra, Hinke and Chris, thank you! The online version was made possible by my caregiving team.