Exactly six years ago – in 2013, when he was 12 – Emil’s illness was at its very worst, but just a few months later he was well on his way out of the ME misery. This is the story we wrote down 18 months later, in 2014. Emil has consented to having this story published on Recovery Norway’s website.
“Our son is now an energetic and healthy boy. Just 18 months ago, the situation was quite different. He used to be active and happy: he went skiing, did orienteering and enjoyed outdoor life. In grade four the atmosphere in his school class deteriorated badly. At the same time, his homework increased. For a highly conscientious lad who wouldn’t allow himself to go outside and play before all the homework was done, this often meant three hours of homework every day. While his mum and dad were at work and his school mates played football outside our house, he would sit inside for hours, doing homework.
A complete stop
During this period, he started becoming ill quite frequently. It was just common colds, a sore throat or an upset stomach. But it happened more and more frequently. In fifth grade he might be ill one out of four weeks, but in sixth grade it was three out of four weeks. After his first day of school in grade seven, things came to a complete stop. As usual, he had a very sore throat and a headache, only this time it didn’t pass. The symptoms just got worse, and there were more of them. After a while he constantly had a strong headache, a sore throat, painful ears, nausea and vomiting several times a day. He was tired all the time and only wanted to sleep.
Emil had several rounds of medical assessments, but the doctors could not find any cause for the symptoms. Blood tests showed that his immune system was close to failure, but the message we were given after a while, was that this would improve after a few years. An assessment by a psychologist at Drammen hospital concluded that he was optimistic and had no mental issues. In the autumn he was diagnosed with ME.
It felt wrong not to try
Emil was too weak for visitors. Even half an hour with Granny on the sofa led to a serious aggravation of the symptoms. We tried desperately not to give in completely. Emil was forced out of bed every morning, and we tried to keep him active as long as possible. But he was worn out well before noon and had to sleep until we woke him up again around 5 pm. He went to bed again just after 8 pm and slept until 8 the next morning.
After six months with our son in bed, and countless investigations and assessments of what to do, we began to consider Lightning Process. We were told the usual horror stories and felt quite uncertain to start with, but we also found many stories about people who felt they had become completely well again through LP. We made up our minds; it felt wrong not to try this. We got in touch with Live Landmark, and the very next day she called and spoke to our son. He felt very motivated and was ready to try. He really looked forward to it; this was something he was going to succeed with.
The first part of the course went much better than expected, but we could see that he had to work extremely hard. He fell ill at the end of the first day and was unable to attend day two. Emil was then offered a private tutorial in Live’s home that same evening, and this he was able to do. We really felt that Live wanted to do everything in her power to help. Unfortunately, only mum was able to attend the third day of the course while Emil stayed in bed at home. Yet both he and we now realised that this was the way forward, and we became quite determined to succeed. The alternative would be to stay in bed for years, hoping for things to pass.
Joy and activity
We had discussions with Live and drew up a plan. We were to create joy and try to keep Emil as active as possible. He felt more worn-out than ever, but he was utterly fed up with being ill and was very willing to work. However, he couldn’t do it by himself. This is where the project began. We kept Emil in activities that brought him joy every moment he was awake. We read to him, played games, did carpentry, always with a focus on having a good time in fun activities that would draw him in. We played badminton in the snowdrifts outside our house, and Emil was given the job of walking our neighbour’s old dog. When he was busy with something he felt was exiting, interesting or fun, his ME symptoms disappeared. But if we allowed ourselves a little break and he sat down on the sofa without anything to focus on, he became much worse straight away, and all the old symptoms returned with a vengeance.
When he was busy with something he felt was exiting, interesting or fun, his ME symptoms disappeared
He was still allowed a sleep in the afternoon, but this was gradually reduced as his need for rest decreased. We continued our discussions with Live throughout. After a while we started venturing further away from home. We made small excursions just for the sake of it: visiting a café or a museum, going to Ikea to buy buns, to a petrol station to wash the car. If we were baking a cake, we hid the flour so that he had to go the shops and buy some. He wasn’t able to do what the others had learnt at the LP course, and so we tried to “trick” his head and body onto the right track.
Back to school
Three months after his first LP course, Emil had improved so much that we agreed with Live that he should attend another course as an observer. This went exceptionally well, and after those three days even we as parents felt we could start relaxing a little. Emil learnt the techniques and used them frequently. Another thing that worked well, was his simplified way of countering negative triggers and painful symptoms: he just smiled. Smiling created a joy inside him, and this joy always grew if someone returned his smile. The very next day after the course, he went to school for the first time in nearly 10 months. He managed one hour, and after two weeks he managed a whole school day. By the end of the school year he was able to walk to school with his friends. During the school holidays he went on a road trip through Europe, rode his bike a lot, took part in 11 orienteering competitions and attended a training camp, everything with a great delight that he was finally well again and could spend time with his friends.
After the summer Emil started secondary school and loved being able to go to school. The whole of last year has been much better than we dared hope. He is doing well at school and needs the challenges he is given there. At the same time, we need to make sure there isn’t too much pressure on him and too much homework – we keep reminding him that it is important to have some fun. We are so delighted and grateful to have our healthy and happy boy back!”
Epilogue
When we now think back to the time when Emil was ill, it seems clear that he had got into a state where the brain’s natural mode of working was to focus on the pain and sicknesses that he had endured for so long. As parents we had probably noticed that the pain and symptoms decreased when he was engaged in something he enjoyed, but it was only after that first LP course that this became our strategy for getting Emil out of his ME condition.
Emil had his 13th birthday around the time of the first LP course, and he was not mature enough to manage the techniques we learnt there. That was why we as parents had to make sure his focus was transferred to something exciting, fun, pleasant and engaging. “Create joy”, LP instructor Live Landmark had told us, and we tried to do a lot of that. And then we saw that it worked, for longer and longer periods each day.
To achieve this, we had to change our attitude to Emil. We had to stop treating him as a patient, and that was hard at times. It might be about wearing ordinary clothes rather than a fleece suit during the day, but there were also more challenging issues. A couple of months into the improvement we had a period when Emil felt much better in the daytime, but had a thundering headache once he put his head on the pillow in the evening. We checked with the doctor how much paracetamol and ibuprofen he could take, so that he at least could get some sleep, and then we carried on with the joy-creating treatment next morning. The headache gradually disappeared after some weeks.
We had to change our attitude to Emil. We had to stop treating him as a patient
After the second LP course Emil learnt to control his focus by himself, and then things improved very quickly.
Today Emil feels that even though he missed out on an entire year and had to endure a lot of pain, he has emerged a stronger person. He is grateful for the experience and for what he has learnt. He says: “This experience has taught me to really appreciate the freedom of being well.”
January, 2019