The Utrecht organist Janjob Remmers (1956-1994) lived for four years with the diagnosis of AIDS when there was no treatment yet. His mother, partner and close friend have taken care of him during this time. His mother, Ina Remmers, then kept a diary. Below are some excerpts from her diary.
Living with aids
Janjob knew for four years that he had a disease that would kill him. In that time he has traveled a difficult road. Yet he really lived in those years; a life worth living. Many people have marveled at how he managed to live and how he always took an interest in others. Music was his indispensable inspiration, and humor relieved him. As a result, his family, friends and aid workers continued to visit him.
I was allowed to stand next to him and go with him. I often thought: who is actually helping whom here? Giving and receiving came from both sides, we shared joys and sorrows. They were precious years with special days, ‘pearl days’ I called them for myself.
The days before we knew the diagnosis, were tense. Mieke, my daughter, called me to say it was AIDS. She was with Janjob when the results of the test came out. They have been crying together. My youngest son who lives nearby came quickly to me. At least that’s how we were together, in bewilderment and dismay.
The next day I went to Janjob. It was almost impossible to sit quietly on the train. The people seemed so normal, the sun was shining. But I went to my boy who was going to die. That shouldn’t be! How do I manage to help him?
Mieke picked me up at the station and together we went to the hospital. In the car we let our tears flow, but once at Janjob not anymore. Janjob looked good. He was even excited. He seemed a little relieved to be out of the uncertainty. Together we went to the AIDS specialist. He advised to live carefully and avoid risks. He told Janjob that he was going to feel much better than he had lately. And: ‘I wouldn’t tell too many people. If everyone knows, it’s hard to just go on living and you can do that for now?’ The latter is also the best for me, I thought.
The upheaval of the first days lasted for a long time. Life went on, but it was like I didn’t belong. The next day I participated in a church music afternoon. It was undoable and doable: how was it possible? “You who expect his favor by day, bless his name also by night. I wasn’t singing inside. I kept the song outside of me to keep me well.
It wasn’t until Janjob came out of the hospital after two weeks that I felt a little better for the first time. He invited his sister and me to his home. His two best friends Fred and Sietse were also invited. That turned out to be a really nice meeting, but of course it was also strange to come back to his house. That double thought: less than a year ago he came to live in this apartment, which he was so happy with. His first own front door. And now: for how long?
A real boost came on Good Friday. The morning newspaper came in with a big headline: ‘Healing AIDS closer. Dr. Buck had made a great invention for a new drug. More tests had to be done but there was a lot of hope for success. I couldn’t read any further because of the tears in my eyes. Thank God, a new realistic expectation! Janjob called me in the morning. We were both crying on the phone. Many will begin to hope again, I thought, and we certainly do.
A few weeks later, the AIDS consultant put it very nicely: that we should not expect too much from this discovery of Dr. Buck. That doctor was later removed from office because of this affair.
For Janjob, the new therapy came too late. Six months after Janjob’s death, a friend discovered that he had AIDS. He’s on these new meds now and he feels good about it. He once told me during a visit that he felt bad about that towards me. I loved that, it also feels weird.
Janjob was very important to me and I was very important to Janjob. After my husband’s death, he had increasingly become my sounding board and pillar of support. Janjob and I shared a lot. Above all, it was the music. Janjob was an organist and a very talented one. Concerts by Janjob almost always gave me pearl days. Such a concert was a great beauty experience and my son could give it with his talent. The audience listened intently. The services in the cathedral were also special. Just the walk there on such a quiet Sunday morning. And then those heavy church bells that seem to ring out all over the city. Sometimes the hospital chaplain, whom I also saw in the hospital, was the pastor. Once we were standing in a wide communion circle passing bread and wine, when Janjob played Mendelssohn’s Andante with variations. I struggled not to cry. And then a song like that: ‘All that is doomed may you regain hope’. I only understood it a little and I only believed it a little. But let it be sung, I thought. Or that other time when Janjob played Le banquet célèste – Messiaen’s celestial banquet. The music gave the prospect of joy and anticipation. I knew that Janjob also played this hope for himself. The music rippled to the people. Something happened. The people who stood next to me will not have felt how I trembled inside. It felt like a piece of heaven was with us, while playing the organ is human work. When the organ fell silent, I knew what was happening; the deacons went upstairs and brought the bread and wine to the organist and registrant. Separate operation.
The music made the period of Janjob’s illness so beautiful and at the same time so difficult. I felt that I would never be able to endure a concert by another organist again.
Fortunately, there were many people who supported me. His friends Fred and Sietse, my daughter, my sons and many others. Sometimes people I hardly knew asked how my son was doing. I was out to dinner with my singing group once. It was the same occasion where we had all eaten together on my last birthday. When we entered the owner asked how I was; he hadn’t seen me in a while! Later when taking the orders, he asked, “How is your son?” “You mean my oldest son?” I asked. ‘Yes, I don’t know’, was the answer, ‘I mean that boy who is always so caring for you’. Such comments made me feel good.
There were also people who disappointed me. A friend I’ve always had a good time with stayed with me. She had lost both her parents early on. She said that it should have been. I stammered something like that you can make peace with some facts, but you can’t say everything that happens, an accident or a war, was meant to be. “Yes, actually,” she said. I felt all angry, all my hair stood on end. “Then you can certainly say the same about the AIDS virus,” I didn’t say aloud. Who should have said that then? Surely not from God – whatever we mean by that? I feel such thinking as blasphemy. AIDS came into God’s creation just as poisonous mushrooms. But I refuse to believe that God makes a plan who should eat those mushrooms. If God leads us, surely not exactly to that one path. When I Janjob told about this conversation, I could express my anger. We feared that many people thought that way.
No, then that minister, whose sermon I heard when I spent a weekend over at Janjob’s. He himself was blind and preached about the “quiet spring” and suffering. “It’s there, it can happen to you, but we don’t have to think that God has a special purpose for it, as if certain persons should learn something.” Anonymous in an unknown community I felt very drawn to. I had that too when we sang in church in the morning:
God’s goodness is too great for happiness alone,she goes through all life in all trouble.
Happiness and trouble, with God’s goodness. I wrote it to Janjob on a card.
I used to do that more often, write cards. With the last Easter I wrote: ‘Easter, experience, / revival, / passage, / assignment. / With much love to my son Janjob, of whom I am so proud.’
We talked to each other almost every day, about anything and everything. Besides the music, we also shared our faith. Janjob’s faith was strong. Even Fred, who is not a believer, once got him to read the twenty-third psalm. Janjob had once again suffered a terrible fever. ‘I know we shouldn’t attribute magical powers to reading the Bible, but the fact is that afterwards I calm down and improve.’ He explained to Fred that the Psalm words speak of the future, of a vision: “I lack nothing, I shall lack nothing.” Fred later said it was a special addition to their relationship.
Sometimes Janjob and I would read the Bible together after meals. We found good words in the Psalms like, “God is our refuge.” Or we discussed sermons we had heard. Janjob once told of a sermon from a wedding service where he played the organ. It was about the prophet Habakkuk. “Habakkuk saw the many injustices in the world and he complained to God. But at the same time he praised God who gave him the strength to go on: even if the fig tree did not blossom and there was no good harvest, I would still rejoice. Praising it is more than grateful for the beautiful moments, although that is of course also allowed. Praising should not only depend on happy events. It should continue in a larger whole, ” said the pastor to the bridal couple. “That is what Habakkuk meant and that is allowed I can say the same,” said Janjob. His eldest brother had been to the little church in Schokland that evening, where Henk van Ulsen gave a lecture on the book of Job. Just like with Habakkuk: the praise to God cannot depend only on what is or is not personal to us.
Another time a conversation about a sermon took us to angels. The minister had read the story of Tobit from the Good News Bible. In this the angel Gabriel had helped the people, but they did not know that it was an angel. The message of the sermon was how people can be human and angel to each other. A few nights before, Janjob had been feeling unwell and very sad. He called Fred and he immediately went to him at half past one in the night. He sat and talked with Janjob for at least an hour. After that, Janjob had gone to sleep well. He had experienced Fred as an angel. He was then also for Janjob. If angels are experiences of God, like faith itself, then an angel is like a part of God in people, we thought. We also talked about the danger of wanting to test everything against our own experiences and also about the reluctance to dare to speak of our own experiences. Janjob put it this way: ‘There is always a misty area between knowing, hearing and believing. Either you do or you don’t and if you do, you don’t always do it in the same way.’
Another time we walked through a castle garden in the spring sun. Inside, in one of the rooms, we saw a large painting that raised all sorts of questions. It was about Lot and his daughters. Lot’s wife had stopped. Looking back too much made her unable to move. There was no new way for her. Later I read an article in the newspaper about a monastery in Toledo. There is an inscription: ‘There is no way, only going. What a beautiful text! I wrote it on a large sunflower card and sent it to Janjob.
Janjob and I went out more often. On a Sunday afternoon with beautiful weather we took a ride along the beautiful waterways near Driebergen. At one outside we walked through the woods. It was a beautiful moment, no wind, the sun already gave warmth and at the same time a delicate light; in the forest there were countless snowdrops. “You’re holding up so incredibly well,” I said. “I can’t imagine another sick person with a mind saner than yours.” “But only with the help of all of you,” Janjob replied. “That’s true, we’re all happy to help, but you have to do it anyway.” When I took a picture later, we talked about ‘holding’. With a photo you make a memory visible, but the moment itself is immediately over. A week earlier I had followed a church service on TV, where the scripture explanation was also about ‘holding on’. I told Janjob how, according to the Gospel, Peter saw that Moses and Elijah the prophet were talking to Jesus when they were standing on a mountain. There was a light that thrilled Peter. He wanted to build tents for Jesus, for Moses and for Elijah. But it was not possible: Moses and Elijah disappeared from sight and Jesus and his friends had to go on; descend the mountain and walk the road that would lead to the suffering of Jesus. Couldn’t stand still. I’d also like to build a tent for that nice afternoon, a wall around it, stop time, not have to go down the mountain to…
The mud I almost slipped in was another reality.
A special memory is Janjob’s last holiday. He was so excited about it and so were we. He and Fred went to France together after a long hospital stay. He was not very well, but in consultation with the doctor they decided to go anyway. When they left, I very much hoped that, despite all the difficulties, he would still be able to enjoy himself. We had a drink and then Fred brought down the last things they needed. “You can’t have better protection than Fred,” I said. “He’s so capable and strong, to which Janjob said, ‘Yeah, but we’ve got the Lord too, he just isn’t here for carrying bags and stuff.’
A week later I went to France myself, but it didn’t go well at all. It was cold at first, but as the sun started to shine brighter, Janjob didn’t get any better. One morning he had a lot of blood in his mouth, we didn’t know what to think or what to do with it. The spot on his penis, which had been bothering him for months, was painful again. ‘I should come into the bedroom and discuss it,’ Fred said. “Shall I open the shutters, so you can see the mountains?” I said. Janjob had also been thinking about those words from Psalm 121 over the past few days. “Whence shall my help come, my help from the Lord, who created all things.” But we did not think that the Most High would immediately offer us an answer in our considerations, rather that we had been given reason to do so.
The next day we went back home. Janjob then immediately went to the hospital. He has been admitted many times. Usually suddenly. I remember we made an appointment the day before his thirty-fifth birthday. ‘You want to come and congratulate me. Come in the afternoon, then we eat somewhere and for the evening I ask some people at home; that should be possible. It seemed like a nice and good plan. I called him at midnight. ‘Hello boy, congratulations and all the best wishes’. ‘Thank you. It’s off to a good start,’ said Janjob, ‘do you also have the glass in your hand?’ We drank at the same time. ‘To your health, dear boy. Till this afternoon. That’s soon.’
The next morning, Fred called me from the hospital’s outpatient clinic. Janjob had developed a lot of pain in his elbow during the night and he had called Fred. An infection was diagnosed in the hospital. Janjob had to be hospitalized because of the high fever and cough. Fred had also immediately called Mieke, she was perplexed. A few days ago she had visited Janjob and they had exchanged holiday experiences. Janjob had said at the time that he felt so good. That happened more often and then he was in the hospital for weeks.
Janjob had had a liver biopsy a few hours earlier. He had to lie on his side for four hours and listen to music: “If you feel the way I do now, it’s best to listen to the Hohe Messe or to Wagner,” he said. There was a wonderful bouquet of flowers that friend and pastor Gerard had brought after the service in the main church. Janjob would have played there. ‘On behalf of three hundred people,’ Gerard had said. We can’t make comfort, I sometimes think, but sometimes it’s there anyway.
Janjob and I also talked about the hospital feeling, about what it’s like. There you are so absorbed in your own physicality that you can think of almost nothing else. “I wish there was something I could do for you,” I sighed. ‘Yes, you can’t squeeze oranges against such a deadly disease,’ was Janjob’s answer.
We discussed Janjob’s funeral thoroughly with Fred and Sietse and my children. He wanted the service in the cathedral with his colleague Peter as organist and his friend Gerard as pastor. And especially Psalm 84: ‘From strength to strength do they go on and on? Janjob said: ‘That’s great, you should sing that together in a church. Psalms help you to stay upright, to carry you further. You are not all that Christian, but sing along, you know. It has to be dignified and stylish.’ It certainly will, I thought, it has to be in your style and people have to know that. We should not call the church service a mourning service, but a service of Scripture and Table. In the large church people stand in a large circle at the evening meal. Those who do not want to participate can then stand by as a sign of solidarity. At the top of the ad, he wanted the text, “Behold, I make all things new.” If everything was properly arranged, things could be done on that day in order and dignity. He wanted the event to be experienced without any problems about practicalities.
I usually cried at unexpected times. My newlywed daughter came back from a beautiful honeymoon and called cheerfully. I was suddenly in tears. “They all do what they want and you can’t,” I said when I called Janjob afterwards, “I don’t mind that,” he said, “as long as I get better.” It also often happened to me after a period in which the acute danger had passed. Then I felt so relieved that I burst into tears. That’s how it worked for me. In times of trouble I was often quite strong and when things went well again, I felt the vulnerability even more obvious. I did feel that I had to let go of Janjob in a way. I shouldn’t get in the way of his detachment, which of course was there. I’ve often wondered how I was supposed to learn that. Then I thought: How can I continue later when this heat source is no longer part of my life? After my husband died, I often thought: was he with me just one more time. My son was still there, although I knew it was only temporary. How I shall long for him when he is gone!
I told a couple of friends about Janjob. He said, “Keep in mind it could be quite a while.” And she: ‘Don’t look too far ahead and take every day that is good with gratitude. It may be simple, but that’s all you can do.’ No, that’s all I can do, and I thought of the prayer of Francis of Assisi.
“Lord, give me the serenity to endure what I cannot change.Lord, give me the courage to change what I need to change.Lord, give me the wisdom to discern these two?”
I have often seen the second sentence of that prayer as a commandment to myself, but it was actually better to think of the first line. Janjob had that peace in him. He lived like a brave man. He took the days as they came, in wisdom and patience. But I usually couldn’t. If only I could get a few days of rest from my restlessness, I often thought.
My mother used to say: God calls his dearest children early. She had learned that saying from her father; a sweet young sister had died in their family. I vehemently resisted that thought. At a time when so many children died, I can understand that people came up with such ideas. It seems like a sense of suffering. They kept each other humble by believing that whatever happens can only happen by God’s will. But people aren’t born to die early, are they? That would be a nonsensical plan of God! It is true that someone who has been touched by illness and death has a different attitude to life than a carefree person. The seriousness of life can make people honest and thoughtful. It would be better for the world if such people just lived. I don’t want to think I understand any of God’s purposes when young people die. If, in a few years’ time, there is a chance of a cure for AIDS through natural possibilities and a lot of common sense, then that is great, but it cannot be any higher purpose that young people are now dying of it.
Once or twice I allowed myself to daydream: imagine if Janjob could get well again. Everything would change for him and for me, back to what we call a normal life. Are sorrow and death part of life? Is my life normal and people who know no sorrow know nothing about the depths and the heights? How did I actually live until before? Privileged, that’s for sure. With everything I thought about, I felt that today was enough. The loss was inevitable for me, but I didn’t know how to prepare for it. I knew about it, but I couldn’t comprehend it.
At some point, Janjob felt he didn’t have to fight to get better. There were those little signals. He asked his sister to stop saying “hold on” when she left him. He thought he didn’t have to be tough anymore. It’s hard not to say anything more than good luck or ‘goodbye’ when you leave. That’s why I usually said ‘goodbye dear boy’ myself, but actually I wanted to say so much more and there are no words. You don’t want to make it too difficult for each other when saying goodbye. A thousand words are not enough.
Janjob himself arranged for the possibility of euthanasia. We discussed that well. It all started when the AIDS consultant sent him forms for a declaration of euthanasia, following a few conversations. Janjob had received them on Tuesday, but then he ‘just didn’t feel like it’. But he thought it would be better if the forms were signed. He sent them a week later. Euthanasia was no longer discussed for a while.
Weeks later, Janjob told of a conversation with Fred. It was about a man they had both known well. He had AIDS and, although he appeared to be in reasonable condition, he had euthanasia performed. As I spoke, I clearly noticed that Janjob, one way or another, hadn’t had enough of life yet. He just wanted to get better. I felt that Janjob didn’t want to say goodbye to us and to life just yet. I was happy about that.
It wasn’t until months later, when Janjob had been in hospital with a high fever for weeks, that the theme returned. He asked if I had ever thought about euthanasia for him. Yes, I certainly had, especially in the last days and I also told him honestly that I still found it difficult to think about that, that my self-interest also played a role, that I did not want to miss him. I loved Daddy, that too was largely self-interested. Grandma loved me very much, self-interest also played a part in that; she wanted to have children. Janjob’s life was also my interest. I told him that no one has helped me as much as he has; that we always felt each other.
At that time he had not yet spoken to others about this subject, but the day before he had really thought for the first time that he was going to die. Fortunately that had not happened. The next time we discussed it, he said we still need to go over some of the details of his euthanasia statement. Then we talked about the Christian faith and euthanasia. We agreed that such a decision was not complicated by the Christian faith. Perhaps the opposite. The gift of life would have been taken from Janjob long ago had it not been for medical interventions. In the end this was already ‘intervention against nature’.
After this conversation, Janjob talked about it with one of the sisters and then with the AIDS specialist. The specialist had sat down quietly and had said that they should talk about it in due course. We didn’t know exactly what he meant by that, but at least there was a hint of a possibility. A few days later, the doctor had asked Janjob if he wanted to be put on a ventilator if breathing stopped coming naturally, like in a coma. Janjob didn’t want that. Sietse was there when the conversation took place and Janjob thought that was a good thing afterwards. “Do you think there is an immediate danger to life?” I asked when Sietse called that evening. No, he certainly didn’t think so.
It was the last time we talked about euthanasia. After that, Janjob recovered and we had a good time. When he went into the hospital for the last time, things went very quickly.
Mia Duijnstee, Henry Mostert en Evert van der Veen. Mijn kind kreeg aids. Het verhaal van de moeders. Utrecht: 1997.