September 2013
Our daughter Aftur has been ill for three weeks now. She has flu symptoms and a headache. We’ve already been to see the doctor, but we go again. To the GP. A young man. This time he refers her for an MRI scan, because her legs hurt, particularly her upper thigh. Her appointment is next Monday, in a week.
A few days later Aftur’s GP calls to say her blood sample indicates Borrelia. However, the sample is inconclusive. He wants to wait for the MRI scan, which is in a few days, before he takes more samples.
Sunday night I’m told she’s lying on the sofa in the lounge, feeling very ill. I run to her. She’s screaming in pain. Her head is particularly painful. I ask if she feels pain at the back of her neck. She does. I call 113, the emergency telephone number. I tell them I suspect meningitis. She’s 14 years old.
The ambulance arrives shortly after. Armed with masks and plastic they enter the lounge, looking like aliens. It’s a bit of a shock to us. But Aftur is calm.
Perhaps she’s one of those people who perk up when help is at hand? Does she seem a bit better? Or is she pulling herself together for the doctor?
They take her in the ambulance. I’m allowed to come with her. A family member follows the ambulance in our car. Speed cameras flash as it passes at an alarming speed, on its way to Larvik.
I feel we’re in safe hands now. They are professional and quick.
The doctor on duty takes blood samples. All tests are fine. But she is puzzled by Aftur’s general condition, which doesn’t match the samples. She suggests she should go to the hospital in Tønsberg. I have to take her there myself. She seems better, but I take the doctor’s advice. We’ve been struggling for 3 weeks. I have the doctor’s referral and I want to make use of it.
At the hospital, a paediatrician with an Icelandic name receives us. She examines Aftur thoroughly, focussing on her reflexes. She studies her face. I’m impressed that she sees that Aftur’s face is starting to droop. I can’t see it. The paediatrician does tests to see if she can wrinkle her forehead and smile.
As she starts to examine her feet, I feel ashamed. Aftur probably has the dirtiest feet ever seen at Tønsberg Hospital. Later I realised that she was depressed, that she had stopped washing herself. I didn’t know at the time. But the paediatrician does her work. She’s a professional. She requisitions a lumbar puncture test the next day.
They ask me if I want to stay, but I go home. It’s 3 am in the morning. I’m a bit scared of hospitals and the situation makes me slightly anxious. Also, I think the people at home might want to ask some questions and get some answers. I only get a few hours’ sleep anyway. I’m back at the hospital before 10 am the next day.
Aftur has had a good night’s sleep. It’s time for her lumbar puncture test. She has to roll into a ball. It makes it easier to insert the needle into the spine. I see now that her face is starting to droop. One side of her face is drooping. One eyelid won’t close and on the same side of the face her mouth is drooping. It’s a shock to us both. The doctor provides no information and we don’t ask.
We have to come to the hospital every day for an intravenous course of antibiotics. It’s administered through a small tube in her arm. She has to sit like this for 90 minutes, every day. She doesn’t have to stay in hospital. We drive back and forth.
We should have been given more information, the hospital forgets the psychological part of a human being. A beautiful 14-year-old girl has had half her face distorted and we don’t know what will happen.
In a shop we run into her best friend and her mum. Suddenly and unexpectedly they stand in front of us. They freeze and look scared. The mum puts her arm around her daughter. Terrified she looks at Aftur and her lopsided face.
I shouldn’t have stopped at the shop. This makes it all worse. Everyone is scared. I should have asked the hospital for more information, but I was probably in shock too. In a state of shock my actions become automatic. It’s difficult to think new thoughts.
For two weeks, we drive to and from the hospital. She’s not better. Her face is still distorted. I’m a bit worried about her eye that won’t close, that she should get something in it while she sleeps.
Perhaps she should have worn an eye-pad to protect it, I think a long time afterwards. In my state of shock, a thought will come to me, but then it will stop. I can’t finish my thought, I can’t act.
The course of antibiotics is extended for another two weeks. Four weeks of antibiotics in total. The paediatrician with the Icelandic name, who noticed Aftur’s lack of reflexes, no longer works at the hospital. A smiling new paediatrician tells us that Aftur is in good health, even though she’s not.
Then, her face starts to fall into place, slowly. It’s been 20 days. It’s a relief. But still. The fright has taken hold. She complains of pain in her feet, arms and head. We see the paediatrician once a month. Each time, I’m told that our child is in good health, even though she says she’s not well. She’s not back to normal life yet. She doesn’t go to school. She stays in, most of the time in bed. It’s getting darker outside. It’s nearly Christmas. She’s sensitive to light, and particularly to noise.
It’s the autumn of 2013. The newspapers write a lot about Borrelia and the explorer and broadcaster Lars Monsen. He’s been on antibiotics for months. I read about the Borrelia bacterium and how it can hide inside cells that the antibiotics can’t reach. That’s why it’s important to stay on antibiotics for a long time. (Today I know that that’s incorrect).
I start to be selective about who gets to know about Aftur’s illness. I tell only a few people, people that I know are sensible, who won’t fall into sentimentality and need comforting. I don’t have the capacity to comfort others right now. My family in Western Norway know a little bit, but not how ill she really is.
I contact a cousin of mine, who suffered from ME for years but has now recovered. He says: “It’s important not to feel scared, then she’ll be ok.” At the time, I didn’t understand what he meant. We were going to meet so he could tell me more, but we never found the right time. In retrospect, I understand it so much better. But it’s not easy to decide not to be scared.
2013: Late autumn/early winter.
I look into alternative medicine and book an appointment with a biopath. We order a lot of pills from Iherb. A strict regime of pills 3-4 times a day. She also has to go on a special diet, which means no sugar or other carbohydrates, etc. The diet makes her very skinny, but not well.
I run backwards and forwards between the sickbed and the computer, trying to find help. I’m feeling quite stressed. I have a sick child who nobody can cure. One day I trip over the door sill. I was going fast, almost running when I tripped. I crash into the wall. One side of my body hits the wall, taking the full blow. The impact is loud enough for people to hear, they come running.
For several years, our family was involved in lawsuits about our finances and tax payments. In 2013, we attended three different court cases relating to this. The stress factor was high. My thoughts were paralysed by fear. Our daughters Aftur and Myndin were too young to come to court with us (their brothers were present). We were absent a lot of the time (attending court cases in Oslo) and they were at home or at school, worrying about how things would turn out for us in court.
2014
It’s a new year. 2014. We try acupuncture. Again, we shuttle to and from. We have a faint hope, but acupuncture has no effect in Aftur’s case.
We still have monthly appointments with the paediatrician at Tønsberg Hospital. I’ve started cancelling the appointments. They’re a waste of time. Also, I find it depressing to meet this smiling person who won’t listen to us. Last time we saw the paediatrician, I mentioned that Aftur’s symptoms resemble ME symptoms. The paediatrician dismisses it outright, saying that Aftur does not have ME. We are also informed that the waiting time for an ME diagnosis is 18 months, and, as a rule, the child must have been ill for at least six months before ME can be considered. It seems like the paediatrician tries to avoid this diagnosis.
During this period, I’m sometimes reminded of an incident that occurred when Aftur was little. She was four years old and had had her tonsils removed. The operation went well, but over the next few days she started to feel worse. It should have been the other way around; she should have been feeling better. We were worried and one night she sat in her bed screaming in pain. We looked at her, I guess we looked worried. I took her to ER. They asked her questions. Aftur was crying in pain. Her throat was hurting. The doctor wanted to take a blood sample and pricked her finger. It made her cry even more. She screamed out loud. The doctor asked where she was hurting. She pointed to her finger. The doctor and I both realised what was happening. She was scared. The doctor comforted her, told her that’s she was ok and that the prick in the finger wasn’t dangerous. This calmed her and we went home. The child was completely healthy.
I keep thinking about this ten-year old incident during the winter of 2013-2014, as, again, she’s lying in bed in pain. She screams. In the winter of 2014, I keep thinking: is it some kind of fear that she can’t let go off?
Winter 2014
It’s February 2014.
We’ve given up on the homoeopathic pills. She asked if she could stop taking them. She also wants to give up the diet and the acupuncture. She’s cooped up in her room. She’s now 15 years old.
Before Christmas, I asked a friend about a girl I remembered from folk dancing classes. The children took folk dancing lessons when they were little, and there was a girl there with a strange disease. She was lying in bed in a dark room much of the time. People had to be quiet if they walked past her room. I remembered this story and asked my friend how the girl was doing. My friend said she’d been ill for three years, until she attended a three-day course. I thought it sounded like a religious thing. How could anyone recover in three days? It sounded like some kind of revival. But the story stuck in my mind.
At the end of February, I go to Bergen, where I spent my childhood. I get in touch with an old friend.
She’s a newspaper journalist and has written articles about people with ME who have recovered after attending a three-day course in the UK.
I read the articles carefully. On the same day, I contact the mother of the girl from the folk dancing classes. She replies to me, saying: “It’s a good course whether she recovers or not. It’s something she will benefit from for the rest of her life.”
I take her on her word. I remember her from the folk dancing classes. There was something trustworthy about her.
She gives me the contact details of the LP course instructor in the UK. Our daughter will talk to her daughter. The girl who recovered. They talk for over an hour. It’s a pivotal moment. After the telephone conversation, she is more optimistic and I’m positive to contacting the LP instructor Heather Thomas in the UK. Now things are happening fast. She gets an appointment with the instructor on 26 April. Just after Easter.
On 9 May, our twin daughters Myndin and Aftur will have their confirmation ceremonies in church. Aftur has not attended any of the preparations, but she’s allowed to be confirmed, nevertheless. The school has been fantastic. There have been no reports to the child protection authorities. We’ve been met with nothing but understanding, positive messages and consolation. Perhaps it helped that her twin sister Myndin attended school every single day.
I have altered their national costumes this winter, so they’ll fit. They were a present from their grandmother. I don’t know if Aftur will have recovered in time for her confirmation, but we have sent out invitations, hired a chef and organised everything.
For Easter we go to Berlin. Aftur, who’s ill, go in the car with me. The others go by plane. As soon as Easter is over, we go to England for the LP course. I can hardly wait. I have started to believe in it. I read Phil Parker’s book. Phil Parker is the inventor of the Lightning Process. I didn’t like the book very much. It’s too boastful. I’m from Western Norway after all. I’m not used to such boastfulness.
But the patients’ stories on Heather Thomas’s website are nice and encouraging. Heather is an LP instructor, trained by Phil Parker. She suffered from ME for 20 years and has held several courses both in Norway and the UK.
In Berlin, our daughter stays in the rented flat most of the time. She comes out with us once, but after about 50 metres, her big brother has to carry her. She can’t walk.
25 april 2014
Finally. We’re on the flight to London.
We take a taxi to Kings Langley. We stay in a small, simple-standard hotel.
I notice that she’s very thin. I’m thinking: “What if she dies here in England, in this small hotel room I’ve brought her to? “I’ve been cancelling the appointments with Tønsberg Hospital over the last few months. “If she dies here, all this will come up and I’ll go straight to prison.” These thoughts arise because, at times, I’m not sure I’ve made the right choice. And, because it’s a personal choice, not sanctioned by the authorities, who after all are entitled to punish people if something bad happens to our children.
Day 1
The morning after we go to the address Heather Thomas gave us. It’s a bit far for her to walk, about 200 metres. But I’ve made time for it.
Heather greets us in the doorway. She tells us that the other participant couldn’t make it. Our daughter will stay there alone. I leave the house, feeling sceptical. Aftur is alone with a stranger. For four hours. What if she’s mean? What if she strangles our daughter, or drowns her in the river that runs in front of her house? I call after 10 minutes. Everything is fine, Aftur reassures me.
After 4 hours, I pick her up. She’s alive. We walk ever so slowly back to the hotel. We take many breaks on the way. She’s the same. She walks slowly. Her feet are hurting, and she has a sad look on her face. Sometimes, at the hotel, she shuts herself in the bathroom.
That night she falls asleep early. It’s so strange to see her sleep. She’s sleeping peacefully. As if she hasn’t slept in months. At home, I often used to peep into her room at night when she was ill. She almost never slept. She was just resting. She’d wake up as soon as I came into the room. Perhaps she hadn’t really slept at all? In retrospect, I understand that she shut herself in the bathroom to do the exercises she’d been taught at the LP course that day.
While she’s sleeping (it’s still early evening) I visit Heather’s website. There’s a film at the bottom of the page. I watch it. I read about Thomas Overvik, who suffered from ME. He was gradually getting worse. In the end he was confined to his bed and could not feed himself. He could not stand any noise or light. I thought I could smell the stale air in his bedroom. His wife had given up. The film shows a colleague of Heather Thomas’ entering the room. After two or three hours, he’s able to let a bit of sunlight into his room. The day after, on day 2, he is ready to get out of bed. His muscles are weak, he must be careful. He actually recovered because the LP instructor talked to him!
The next morning, we again take a long, long time to walk the 200 metres. Earlier that winter, I thought of getting her a wheelchair. But it was such a big step to take. In the wrong direction. In a direction we don’t want to go.
Day 2
I’m feeling calmer. After four hours, I pick her up. I’ve planned for us to go into London.
I see her on the other side of the road. She’s walking quickly! I walk up to her and say: “How nice to walk fast with you again”. She smiles. That’s when I know that she’s recovered.
We take the train into London. From there we take a taxi from one tourist site to the next. She takes about 1000 pictures out the window. We go to a restaurant of her choice. Then to the hotel I’ve booked.
She’ll go to Heather’s again in the morning, for her last session.
Day 3
The day after I send a text to my family. I write: “We will return home in triumph”.
Then I text the three people who pointed me in the right direction:
1. My friend from Oslo who told me about the girl who recovered. 2. The mother of the girl who recovered. 3. The journalist from Bergen who wrote about the ME recoveries.
I write: “Aftur is well, we return home in triumph.” They are all so happy and excited. They know what it’s all about.
We fly home, then go on the long train journey from the airport, then to our house. Aftur runs from one room to the next. In a short while, she’s visited every room on the farm. As if she wants to bless all rooms and tell them that she’s recovered. Her big brother thinks she’s put on weight. In five days?
We return home on a Saturday. On Monday she’s back in school. It’s the end of April. It’s lasted eight months all together. The state of emergency is over. Myndin has got her sister back.
It’s confirmation time. Her relatives come from Western Norway, together with a few friends. Not many of them know how bad it was.
Myndin (left) og Aftur (right) (Foto: Trine Mikkelsen)
Epilogue
A mother with a sick child is not entirely in her right mind. She can easily make mistakes. I made many mistakes and I did some things right. I had bad luck as well as good luck, but it turned out well in the end.
I see that fear and terror are recurring themes in my story. It’s a well-known fact that too much stage fright makes it impossible to perform. A healthy dose of stage fright is like a pinch of spice, it makes the performance better, but total fear and panic is paralysing.
But it’s too easy to say: don’t be scared. This is when the LP course provides the tools. A carpenter needs a hammer to build something. A plumber needs a spanner to fix a pipe. I’d also like to add that the course of antibiotics was crucial and perhaps lifesaving in the first phase.
Writing Aftur’s story has made me realise how important it is to hear about people who have recovered, that’s the whole point of this after all. All three people who helped me told me about people who had recovered.
You can read Aftur Spildo’s story in her own words here: This illness will last for a long time. And why is that? Because I am already prepared to die – inside