Maren and Mona (daughter and mother)
My experience with LP from 2009.
I was diagnosed with ME in 2008, after a thorough medical assessment by the GP and at Haukeland University Hospital.
About ten years ago I though I had recovered. I was completely convinced, in fact. I started to exercise to get strong enough to go to a folk high school with nature excursions and dog sledding. Finally, I could join something that “every” other 19-year old did. I was going to make new friends. Become part of a community.
That was something I had missed for the last three years. But now! Yes, now I was on the threshold of a new life! I was healthy, wasn’t I? I was no longer sick because I didn’t do sick. I had stopped doing that two years earlier.. I had recovered from ME!
The fact that since 2008 I hadn’t been at school more than 1,5-2 months, where I’d attended for a maximum of five hours a week, was trivial now. I just hadn’t bothered with going to school, and it had been no fun to start in 1st grade (high school) for the third time either. Above all at the same time my baby sister began high school..
The fact that I had tried working, and that hadn’t worked out either… No, I didn’t even think of things like that!
I was completely done with having ME! (doing ME)!
Life was truly about to begin. Because you just have to want it enough. Live Landmark had told me that two years earlier. Because SHE had recovered from ME. She didn’t do ME anymore. We who were in the basement of a rehabilitation center in Bærum, all saw it.
I thought it was quite awkward standing there and stomping the floor, shouting “STOP” and pushing my hand forward as a stop sign.
So after the first day, I preferred to do the process in my mind. I was doing the process all the time when my mother was dragged around a shopping center in Oslo. Because I had recovered – after the first day of the course. And we had two course days left.
I believed in, and had faith in, Live Landmark. She wouldn’t hurt me. She was clear about that. But she also said I had to want it enough. And I can promise you I wanted it! Finally I was going to be recovered.
In any case, the doctors had said that young people recovered after a few years. So it was a good thing to develop ME as a 16-year old, because then I would get well again quickly.
10 years ago (August 2011) I went to a folk high school. Because I had recovered. Live Landmark had told me that a couple of years earlier.
To be honest, I have suppressed most of the course. I remember we stood in a circle and shouted STOP – and some other things. But as I said, most is suppressed. (I think we were 6-7 adolescents on the course – and everyone had a relative with them throughout the course due to their young age).
I couldn’t complete the folk high school, but had just enough attendance to get it approved. And I wasn’t able to complete high school despite beginning in 1st grade three years in a row. The schools unfortunately knew nothing about adaptations for pupils suffering from ME. So I’m left with completed 10 years of schooling. I tried to take some high school subjects as a private student, but was too poorly to manage it.
I got lucky and got to have a go at working life, by myself and independent of the Norwegian Labour and Welfare Administration. This failed as well.
This year I’m worse than ever. So no, I haven’t recovered.
I have lost trust in people who say they can help me. But the hope is still there… somewhere…
Since I was a minor and doing quite poorly, it was my mother who acted on my behalf regarding the contact with Live Landmark, papers and so on concerning the course. I was kept informed by my mother about what happened before the course, but didn’t get much involved. I was simply too sick.
I (mom) heard about LP through a colleague, who had a friend whose daughter had ME. They (mother and daughter) went to London and the daughter recovered completely from ME. The GP recommended a course in LP and thought it could be of help. As a mom, I was almost desperate and would do anything in my power to help my daughter get better. To see a healthy girl, an animal lover, with dog, cats and horses, who without big problems could move hay bales weighing 300 kg together with a girlfriend, and who had many dreams for her future – fall into illness, was simply heartbreaking! “Luckily” there now was a certified LP instructor in Norway, so it wouldn’t be so expensive that it was out of my reach.
Everything that followed happened in close collaboration with my daughter, but she was only concerned about: get me well! Thus, in reality, it became my responsibility to make the choices.
I had contact with LL by phone, and received some forms to fill out. I convinced LL that my daughter was 100% motivated for this and we got a place on the course. We – because I had to attend the whole course as my daughter was under the age of 18. Both my daughter and I felt this as very reassuring.
Even before we left I realised that this was a method I felt a bit uncomfortable with as a mother, but “everyone” around us believed that I induced illness on my daughter by not nearly kicking her out of bed every morning and getting her to school. As a single mother, with two children, horses, dog, cats etc, – and in addition a very demanding job, I probably thought that I couldn’t fix this on my own. I therefore chose to talk with my daughter and explained to her a bit about motivation and so on. And I prepared her for what was going to happen (based on the conversations I had had with LL), and how she (my daughter) and I would interact along the way and afterwards. In other words: I was skeptical, but desperate.
We went to Bærum, and I got to meet like-minded parents and my daughter got to experience that she was not alone in having an ME diagnosis. No one in our circle of friends had ever heard of the disease.
I sat ringside and experienced the whole session – all three days. Next of kin, who were sitting on chairs behind the adolescents, were not allowed to say anything. We were more supposed to be some sort of witnesses to see that there was no treatment in the true sense of the word going on. I was happy and satisfied that my daughter got such a kick after the first day, that she wore me out with walking in the streets of Oslo.
As parents we were told not to have contact with other ME sufferers. We were not to talk about ME with each other. And by no means were we to join the Norwegian ME Association, as they were just “enjoying themselves with their ME” (my creative rewriting).
The first thing I did when I got home was to contact others with ME (read: the ME Association).
My daughter got a little hyper after the course, and I had to work hard with making her understand that it’s ok to take it a bit easy (contrary to the advice we had received).
I saw that my daughter was far from well, and only waited for a solid crash. When she proclaimed that she wanted to go to a folk high school, located as far North as you can get in this country – I panicked, but didn’t want to stop her. I saw and heard that she was struggling a lot, but still she pushed her body all the time. Every Day.
She went, tried, didn’t tell me the truth about how poorly she was doing, and crashed several times during the year. I had to travel north to bring home all her belongings when she became too ill to take part in the graduation of the school year.
The following years she was doing very poorly. Partly bedridden. I called LL a couple of times during this period and told her how my daughter was doing. She (LL) said it wasn’t possible that she was so sick. Quote: “You signed that she is recovered. Then she is still doing ME, and she has to stop”. My job as mom was to tell my daughter, over and over, that her still being sick, had nothing to do with her being unwilling to get well.
Now, 12 years after the LP-course, she’s realised that she’s not well. And that she needs to pace in order to have a good life. Unfortunately both she and I still meet a lot of stigma. There are many people who have heard of these miracle courses that can make you well in 3-4 days. But there are few who bother to follow what’s happening in the research field out in the world. The mantra we encounter is thus: there are no biomarkers for ME. So it’s in your head.
As a mother I defended my choice of letting my daughter take the LP-course with the idea that it’s good to have some coping tools for mentally difficult periods. I had no extra energy to take a deep dive into everything concerning ME. I myself had worked with motivation on several levels for years and at that time thought: what can go wrong? I also didn’t experience the huge pressure that “it’s your fault if you don’t recover”, but have unfortunately seen afterwards that it has probably affected my daughter to a very large extent, and have worked a lot with her to raise her self-esteem in relation to ME not being her fault!
And when I contacted LL a few years later, she showed who she really was and what she and LP stood for.
Today I don’t recommend LP to anyone!