Little lamb in Jesus' arms
MS transformed Janet Ruitenbeek from a woman with a zest for life into a physical wreck. She knows that she does not have much longer to live. ‘I want to be with Jesus, so that I no longer have to experience this pain and sorrow.’
--By Gerald Bruins (Photo: Jeroen Jumelet/Brian Elings)
--Translated by David Llewellyn Dodds
In the second week of Passiontide she sent an e-mail to friends that had an effect like a punch in the stomach. Janet Ruitenbeek (53) has reached the last phase of MS.
A year-and-a-half ago, she had to move from her specially-adapted rental home in Nijkerk to the nursing home, De Wijngaard [‘The Vineyard’], in Bosch en Duin. Her powers declined swiftly. Now, she can only lie in bed, her time nearly up. She looks up addresses for the funeral and burial. Then, all such matters are settled for the family.
She decides to accede to the request for an interview, having consulted her doctor, who suggested she also consider her immaterial legacy. Ruitenbeek want sto share her story of pain and sorrow, but also of expectation and hope.
In the nursing home, bright with its white paint, a serene sense of rest of people in the evening of their lives reigns. The still relatively young woman has a spacious room on the first floor. The scent is that of disinfectant and medicine. She lies in an adjustable bed by a window with a view of the budding green of spring in the woodsy area. Her eyes are as blue as ever, and full of strength of will. But the disease has left its mark on her now thin, pale face. The first appointment turns out to be a bad time. Ruitenbeek has been suffering from constipation for a couple days. ‘I have such a terrible lot of pain’, she exclaims, while tears run down her cheeks. ‘These are the sorts of days when I’d rather be dead.’ This happens again, with the second appointment, a couple days later. A new air-mattress does not afford the relief anticipated, accounting instead for increased discomfort and pain. ‘Like lying on a rocky beach.’
On both occasions, after long silence, she assembles new strength and continues the conversation. She explains that she does not really want to die, yet. ‘I say I want to die, because I have such pain all day long, unbearable. I don’t want that anymore – it’s more than I can stand.’
Ruitenbeek suffers from a progressive form of Multiple Sclerosis, a disease that affects the central nervous system. She cannot sit anymore. Her legs are effectively paralyzed, in her armsshe has some strength remaining so that, with difficulty, she can still pick up things on her nightstand. She is plagued by bending and stretching spasms. At unpredictable moments her now thin legs cramp, or succumb to a kind of compression.
‘But what’s worst is that I have neuropathy, horrific nerve pain. From my waist to my toes I have terrible pains. It feels like my legs are on fire, as if I’m being flayed alive. The sheet burns on my body. If I put it off, I get too cold. The thermostat of my body is out of order. Sometimes it feels like there’s a truck parked on my legs.’ She gets all sorts of medicine against the pain, but they do not help anymore. Recently, she tried medicinal cannabis, but without the desired effect of warding off pain. She now receives fentanyl , patches with a morphine-like substance. ‘If these don’t work anymore, there is still one last option: a morphine pump. But I’m waiting as long as I can with that, until there is really no other possibility.’
Zest for life
How different Janet Ruitenbeek was once: a woman with a zest for life, full of energy and ideas. Then, if she was downcast for awhile, she always managed to come out of it again. She was enthusiastic, made contact with people easily. Extroverted, too, and if she spoke, it was like someone switched on a radio, thanks to her clear voice. ‘When I was younger, I often spoke first, and thought later’, she says, with a glimpse of the self-knowledge she attained. She was inseparable from her guitar. She had taught herself to play it, and was an autodidact on the piano, too, and the drum kit. ‘If I heard a song on the radio, I could just play it without practicing.’ She developed into a songwriter herself.
Ruitenbeek grew up in the little city of Nijkerk on the edge of the Veluwe, in the neighborhood of Amersfoort. She came from a family which thrived in the spiritual atmosphere of an Evangelical congregation. She has a good contact with her oldest brother, who will manage her affairs for her when she can do so no longer herself. A few photos in her room testify to how close she is to both her nephews, twins hoping to turn seventeen soon. (Photograph: nephews Niels and Rick and their father, the older brother of Janet, Willem)
Growing up, they were not well off. Her father (who died in 2003 at age 67) had been incapacitated by a motorcycle accident. As far back as she can remember, he was at home. She thinks their straightened financial circumstances account for why she did not receive a lot of encouragement to develop her talents. She learned woodworking from her grandfather. She made a number of pieces of furniture herself. On a cupboard in her room lies a wooden sword. On the wall, hangs a little painting of a squirrel, yet another talent she did not work out further.
She was able to put her creativity to work in the journalism program of the Evangelical School of Journalism, at the time, located in Amersfoort. She went to work at the BDU (‘Barneveld Print Union’) in Barneveld, as editor of a medium which has since disappeared, the cable-television information service. Later she became the first internet editor of the company. In 2004 she moved to the Evangelische Omroep (‘Evangelical Broadcasting Corporation’: EO) where she worked on the website of the children’s program, ‘BlinQ’. There she became acquainted with Elly Zuiderveld when she provided the website for the program, ‘Elly en de Wiebelwagen’ (‘Elly and the Wobble-wagon’). Together with her husband Rikkert Zuiderveld and the singer, Elise Mannah, she once gave a private concert in Janet’s house in Nijkerk, she recalls with grateful satisfaction.
Ruitenbeek describes herself as a ‘control freak’. She has already planned most of her funeral in detail: from the card and its text to the music and the minister, ‘a good friend’. She only wishes she could be present for the service herself among the living. ‘The philosopher, René Gudde, said in the EO program, ‘De Kist’(‘The Casket’) that what he found most perplexing was, that after his death he would no longer be there, involved in things, in anything. That is so recognizable. You’re not with the people you love, with what they do and suffer, joy and sorrow, and just being together, anymore. Before long there will be a service and people will remember my life in thanksgiving. It’s crazy to think that I won’t be there with them.’ She falls still and reflects awhile. ‘Although… maybe I will experience it all. I don’t know. We’ll have to see.’
For someone who likes to have a hand on the guy-lines, it was not easy to have, slowly but surely, to let go of everything. First she could still walk, then only with a walking frame, finally, with a rollator. In the next phase she ended up in a wheelchair, to come at last to be confined to bed, the moment of complete dependence. In between, she had to give up driving. Playing the guitar had already become impossible. ‘Slowly I have lost my freedom completely’, she says with regret and acceptance in her voice.
The once so capable, independent woman raises the subject of ‘euthanasia’. Despite the unbearable pain without prospect of improvement, she dismisses the idea of a self-determined death resolutely on the basis of her faith. But she can imagine that people do choose for it. ‘ There was a woman with MS on Umberto Tan’s talk-show who had resolved to commit “euthanasia”. She was not fully confined to bed, yet, but she did not want to experience any more of the process of deterioration, especially not the pain. I understand that completely.’
Soberly she proceeds to explain how she sees things: ‘And yet I really believe that God decides when my time comes. However difficult I find that. There have been moments when I’ve called out, “Lord God, why must I suffer so much pain.” But one of the commandments is, “Thou shalt not kill.” Then you’re not allowed to kill yourself, either.’
Together with her doctor, Ruitenbeek has drawn up a declaration which states that her suffering may not be prolonged unnecessarily. ‘If I get a lung-infection, I’m not going to the hospital. Or, say, I get a gallbladder infection or appendicitis, then I won’t have an operation. Then I’ll stay in the nursing home and they will try to do as much as they can to lessen the suffering.’
She has gotten thirsty from all the talking. She reaches her hand diagonally behind her to get a bottle on the nightstand by her bed. There is no water left in it. She asks to have the plastic thing refilled, with a couple instructions added. Her guest can also put a little yellow pill in the foremost compartment of a medicine box, so she can get it and take it herself. In a holder by her face, is an iPad, for her a window that makes her world appreciably larger. She not only uses it to communicate extensively with friends, but combatatively expresses her opinion on Facebook and Twitter about what she sees as the steadily declining provision of health care.
Thanks to internet, she also came into contact with the confessional Lutheran internet-church Aletheia in the United States. She joins in a church service on Saturday with people from all over the world by way of a video connection. She can join in the singing, there is room to ask questions after the sermon, and each week there is a celebration of Holy Communion. The pastor of this Church, Chris Rosebrough, is of great significance for her. Crowdfunding brought him to her bedside on 23 February. The pastor had the conversation with her that he has with people who know they are going to die. Sometimes she curses, she says, when the pain drives her to distraction. ‘I find that terrible. At first I felt so bad. Every time I thought: see there, I’mnot a Christian. I began to doubt. In what is my spiritual background, you sometimes get the idea you can no longer sin, as if the “old man” was gone entirely. But we still wrestle with sin. Pastor Chris said that I may confess my sins. He in turn may, in the Name of Jesus, say to me that my sins are forgiven forever, thanks to Jesus’ sacrifice on the cross. That was liberating for me. I experienced an enormous sense of peace.’
Her suffering may be great, but she enjoys small things. On the outside of the window of her room, there is a little transparent birdhouse held in place by suction-cups. A little European robin redbreast regularly picks seeds from it. When she had so much trouble with her intestines, and finally relieved from it lay recuperating a bit, the little bird remained sitting there for a quarter-of-an-hour. ‘He kept taking little bites of food and in between sat warbling gloriously. I enjoyed that so much. I see it as a wink from God.’
How does Ruitenbeek look back on her life? She always stayed single, and felt lonesome in this, and so never had children, and felt that as something she missed. In retrospect, she really would have enjoyed going to the conservatory. With growing older, came acceptance. ‘Life has gone as it has gone. I have peace with that. I have been able to teach a lot of people from the Bible. I see them as my spiritual children. It sounds crazy, but I have never been able to witness to Jesus in conversations with people as much as in the past year, while it went steadily worse with me.’ As her illness progressed, so her longing for Christ grew. ‘I want to be with Jesus, so that I no longer have to experience this pain and sorrow.’ In the course of time, she fell back on the essence of her existence, Jesus. ‘I have the feeling that, thanks to Him, I have been allowed to become ever more human. I want Jesus to be central to the service of thanksgiving. Those present think of me, and see me, but I am held fast by Christ. I hope that those attending see that, too. What I mean, I can best explain with an image: I see a Shepherd with a lamb. Christ is the shepherd…’ she begins to weep ‘… and I am that lamb.’
Tomorrow is Easter. What does that say to her, that Jesus is risen from the dead? ‘He is the firstfruits Who is raised from the dead. Therefore I may know that I shall be raised and receive a new body. And through the sacrifice of Jesus I may know that I have eternal life.’
Janet Ruitenbeek hopes to reach age 54 in October. Before her window stands a great beech tree, still largely clad in its autumn finery. ‘I pray God I may still experience this tree in full bloom.’
Janet Ruitenbeek grew up in Nijkerk in Gelderland. From 1985 through 1988, she attended the Evangelical School of Journalism, then still located in Amersfoort. Thereafter, she worked at the BDU (‘Barneveld Print Union’) in Barneveld, first for the cable-television information service, later as their first internet editor. In 2004 she moved to the Evangelische Omroep (‘Evangelical Broadcasting Corporation’: EO) where she worked on the website of the children’s program, ‘BlinQ’. In 1996, she had her first MS attack, called a ‘plaque’ or lesion (‘sclera’). But it was only in 2008 that she received a definitive diagnosis, and then the MS proved to be progressive. In 2011, she was forced to stop working. In November 2015, she was admitted to the nursing home, De Wijngaard [‘The Vineyard’], in Bosch en Duin, where, since January of this year, she can no longer do more than lie in bed.
Caption with the first photograph, of Janet as a child:
Janet is the oldest of a family of five children. Immediately after her is a sister with multiple handicaps who lives in an institution. Then follow three brothers. Of her parents, only her mother is still alive. In the photo, Janet can be seen with a couple of her brothers, a cousin, an uncle and an aunt. (Left: Janet, boy with glasses is nephew, the other two boys are Janet's brothers Geurt and Willem)
Caption with the second photograph, of Janet with guitar:
Twelve years ago, Janet did not yet know she had MS, the diagnosis had not yet been made. At that time, she could still do almost everything, play the guitar and the piano and sing. She wrote several songs for a cd, then, for which this photo was taken. On her own channel on YouTube, she has put a number of songs, among which the sensitive ‘Loslaten’ [‘Letting go’] from 2010, that became an ever greater theme in her life as her illness progressed.