My daughter was ill for eight years, lying in the dark, being fed through a tube. Today she is well

Until the winter of 2012 I had two healthy children; a big brother and a 12-year-old daughter. Two healthy, well-functioning, active children. In the winter holiday my daughter fell ill. I remember vividly the day I arrived home and saw the sledding board tossed outside the front door, shoes in the middle of the floor and our daughter lying on the sofa. She had the flu quite badly, and we realised that this holiday would not be a very exciting one. Rest was the operative word.

Several weeks after returning to school, she was still not herself. She was off colour, but we parents pushed a bit and told her to keep going; things would gradually improve. She did not improve, however, and many times she had to drag herself home from school in the middle of the day.  She was constantly lying on the sofa; her resting periods getting longer every day.

A couple of months later she was examined at St. Olav’s Hospital. After lengthy assessments we finally had a conclusion: post-viral chronic fatigue syndrome. A sad diagnosis where everything is diffuse. No one is sure what the prognosis is or what to expect. We should be aware that it might easily take a year before she recovered – and many never recovered properly from post-viral chronic fatigue syndrome. A sad and vague diagnosis…

From St. Olavs hospital. (Photo: Private)

Sick for eight years

Our daughter was sick for nearly eight years. For a long time she was one of the sickest of those lying in the dark. A simplified timeline shows that she gradually deteriorated during the first year, reaching a low point in the winter two years after falling ill. At that time she was transferred to BUP, the clinic for child and adolescent psychiatry. After a certain improvement (marginal and only visible to her parents) the following year, she reached a dramatic low point in Easter 2015. She was acutely ill, had very strong spasms and difficulties breathing. She was taken to hospital by ambulance and admitted to the children’s ward. Thorough examinations found nothing whatsoever, but she remained in hospital for three months. Then she was well enough to be brought home by ambulance. She was in pain, had no energy and was fed through a tube.

For a long time she was one of the sickest of those lying in the dark …was in pain, had no energy and was fed through a tube.

The months went by, and gradually she was able to feed herself. Apart from that, her condition was the same. Our home had more or less been converted to an institution, where  assistants, physiotherapists, teachers and her GP came and went. Our house was rebuilt to allow for a wheelchair and everything that comes with that.

Many ME parents will recognise so many aspects of our story. Indeed, parents of seriously ill young children play an extremely important role. It is to you as a parent that the health authorities turn when they have information to impart. It is you who must assess and make decisions on behalf of your child. If there is a need to fight for the right to benefits or a need to study government regulations, you’ll be the one doing it. You must facilitate for treatment at home. Very likely, you also have a busy job to take care of in the middle of all this. And it is you who must try to comfort and provide some hope, all the while seeing summer holidays and Christmases come and go, while your child is just lying there, her childhood and adolescence passing by. How was I as her father able to bear all that? How did we address this situation? And what did we do to keep her as happy as possible, hopefully heading for a recovery?

How was I as her father able to bear all that?

When our daughter was given the diagnosis, there was no shortage of advice from all and sundry. Someone had read about a girl who had something similar, and she was helped by a healer. Others had heard about a lady in Mo i Rana who went to England, completed a programme there and come back totally well! Some would tell me that it’s all in the mind; others were convinced it was due to a tick bite and antibiotics would be the way to go. There were so many stories, and it became quite irritating. 

From the hospital corridors. “How did I endure it?” (Photo: Private)

Waiting for a breakthrough

Early on we chose to trust only the people in white coats: the GP and the expertise at St. Olav’s Hospital. The hospital does not provide for home visits, so when our daughter was discharged, our GP took over responsibility for her. Like myself our GP is sceptical by nature, so “luckily” we agreed that we would only relate to what might be described as established medical treatment. Alternative therapies such as Lightning Process were out of the question. Our daughter was ill because of an infection, and the problem was not located in her mind. We would have to wait for a medical breakthrough, some therapy where a pill would sort out her body. I was so pleased when from time to time I read about researchers who for example had found “clues in the blood of ME patients”. After some failed attempts to make her more active, our daughter was allowed to put aside various activity plans, instead deciding for herself what tiny bit of activity she was able to handle. Life in the dark continued in this fashion. She needed help with absolutely everything and didn’t have a shower for months on end. If her condition allowed, a teacher might visit for 15 minutes a week. Still, we all hoped that one day she would recover.

An argument with the GP

A couple of years ago I had an argument with our daughter’s GP. One can just imagine how frustrating it must be for a doctor to be responsible for such a very sick patient long-term, when the treatment in reality is to do nothing, and the recovery doesn’t happen. Concerns were increasing regarding other consequential damage. That’s when the GP suggested I should have a chat with Live Landmark about LP. I was sceptical, to put it mildly. I had read parts of her book just after our daughter fell ill, but I threw it away in frustration and never finished it.

After some preparations by our daughter’s GP, I telephoned Live anyway. The call didn’t go too well. When Live asked if we could come to Oslo to attend a course, I was just amazed. Didn’t she understand how ill our daughter was?

“She cannot handle a trip to Oslo,” I said. “She is bedridden, you know!?!”. 

“Is she in nappies, then?” Live asked.

“No she isn’t, but still…??”

I didn’t show my feelings, but I was angry. The Oslo trip didn’t happen. I was afraid such a trip might be quite disastrous, and our daughter was equally sceptical. 

A new self-awareness

Two years later: our daughter remains in more or less the same condition. There is certainly no definite improvement, as we had been hoping. She is entering her eighth year of being ill, and our patience will again be tested when the spring sun comes into her room. She has spent her teenage years in bed, with no indication of a change on the way. It is 18 months since she last sat in her shower chair, having a proper shower and her hair washed. Her only kind of treatment is a monthly visit from an osteopath she really likes. She says those visits do her good. The GP’s frustration has gone up a few more notches, and she has spoken to Live about LP again. But this time the GP will not give up.

But this time the GP will not give up.

Having reflected on my own 50 years of life, I had had a thought that might be relevant: When as a younger man I was given a very busy job with responsibility for a large staff and a turnover over many millions, I began to feel unwell. Not that I was terribly ill, but sometimes when I was out shopping, I suffered attacks of dizziness, heart palpitation and breathing difficulties. I consulted a doctor, who examined me carefully. He found nothing, but referred me to the hospital for further assessment. Nothing. The doctor asked if perhaps I suffered from anxiety, and my response was to get irritated. “Anxiety is something old women have,” I fumed. Gradually, however, I saw a connection between my own state of stress and the frequency of these attacks. Then I slowly came to the conclusion that after all, I don’t die from these attacks. Once I realised that, things got easier! The attacks still came from time to time, but it was easy to limit them by having a different focus. The attacks then passed after a few seconds, leaving me right as rain.

My new self-awareness made it a bit easier for me to accept that there is more interaction between the brain and the rest of the body than I had thought to begin with.

My new self-awareness made it a bit easier for me to accept that there is more interaction between the brain and the rest of the body than I had thought to begin with. It also became easier for me to accept new ideas and to discuss with our daughter’s GP whether maybe she ought to try LP. My own scepticism would to some extent have been instrumental in shaping our daughter’s sceptical attitude, and if we were going to change her opinion, I would have to share with her how I looked at things now – in a new light. The osteopath also told her good things about LP and helped make her more receptive. The GP gave our daughter Live’s book to read, with many good hand-written notes and simple illustrations which showed how the brain works – the chemistry behind it, and so on. This was brilliant! Our daughter was convinced and wanted to try it! Still sceptical, but “What the heck, what have I got to lose? I don’t believe I’ll get worse, anyway,” she said. Her father was perhaps a bit more sceptical once the course looked like becoming a reality. Our daughter sent the application to Live. I let go, and didn’t think any more about it.

The strangest and best

One Sunday in November, Live called our daughter mid-morning, before she had made any attempt to start her ‘daily routine’ around noon. It is difficult to describe what happened, because it seemed totally unreal. Our daughter had not walked unaided for many years, but now, out of the blue, we see her bedroom door open and she comes tottering out. Like a ghost, with the phone in her hand and Live’s voice in her ear! It was too surreal to be described in words.  She staggered over to the sofa and landed there – totally worn out. She stayed on the sofa for three hours before she could be taken back to bed in the wheelchair. But then she insisted on having her bedroom door open into the living room, where we sat open-mouthed in amazement. This had never happened before.

It was too surreal to be described in words.

This became the strangest and best December ever. It felt like the sun had come out again! In the course of one month, our daughter managed to improve sufficiently in strength to get to the bathroom on her own, walk down the stairs, out of the flat and then, after some time, even up the stairs again. Our first trip by car was to a café, where she stayed for 10 minutes before being wheeled back to the car. But she didn’t go home in order to just lie down and rest. After less than three weeks she was ready to go to Oslo and do the LP course.

Reflections with hindsight

To sum up: This was a few months ago. Our daughter has learnt the technique at the LP course and has recovered. She has gone back to school, goes shopping, visits the cinema, our holiday home, etc. Of course a lot of exercise is still to come for a stiff and unused body, but this will go well. I remember someone at the hospital saying that our daughter “would never become a North Sea diver”, if indeed she would be among the lucky few who improve. A nice way of telling us not to get our hopes up too much! But when I look at her now, I feel that if anyone would succeed in becoming a North Sea diver, should she want to, it will be her.

Do we feel bitter for not having tried this earlier on? No, we’re not bitter. We are delighted that she tried.

Although I felt concerned that I might have transferred my own scepticism to my daughter, her scepticism was clearly also based on her own experiences. She was totally fed up with all the talk about a positive attitude, spending time with friends and being told that it was her own fear of becoming tired which kept her sick. It became more and more difficult to believe that a gradual increase in activity would solve anything, even though she dutifully did everything she was told to do and trusted the physiotherapists. And LP had been described to us in quite the wrong way. This was what we had believed LP was about: “Spend thousands of kroner and travel a long way, just to be told that positive thinking will do the trick.” 

I think that if LP had been presented to us the way it actually is, we would have found it a lot easier to have confidence in its effect much earlier on. We had heard and read of people being told that they ‘created’ tiredness, meaning it was all in the mind, and it was all about pulling oneself together! Just do it! Just walk! Keep going!

We had already seen what that kind of talk had done to our daughter, and of course we wanted none of it. Please could people stop recommending Live Landmark’s book? But then we discovered something. This was not what the course was about, and its content had been misrepresented and distorted due to suspicious minds and vague retellings. 

LP is a tool for training up unconscious parts of the brain that have got stuck. That way you can give your brain good experiences which get it out of the nerve paths that give you those  unconscious thought patterns – without you destroying yourself in the process. The tool is easy to use, says our daughter, surprisingly easy! But it requires a kind of faith that may seem a little odd until you understand what it’s all about. 

It is obvious that you have to believe in what you are doing, when you use your brain to turn round eight years of illness in a few weeks. Of course you have to believe! It is difficult for the brain to stake out a new path if all the time you expect things to stay the way they were. 

One thing would definitely have helped us all to take this seriously: everyone ought to know that although LP believes a part of the brain has got stuck, this doesn’t mean ME is not a physical illness. The illness is physical – she had physical symptoms, and appointments with a psychiatrist had no effect.

Now that she has recovered, this seems clearer than ever; as soon as she used the process and gained more energy, she went straight off to Christmas parties, hiking trips, school, physiotherapy. Friends came to visit, she was cooking, knitting, reading … Of course it is a change and she needs to adapt to normal life again after eight years in her bedroom, but that is only to be expected.

This is the thing that was so very hard to fathom: Our daughter had influenza, and by the way; her mind is perfectly fine! Her psyche remains incredibly good, bearing in mind that she has been ill for eight years. There are no mental issues to sort out, it was all entirely physical. It was so obvious that it almost became comical – think positively? Can you recover from influenza by doing that? You can’t, so why should it work with ME? Our daughter has been thinking positively all the time, and it hasn’t helped her one bit, but LP works. I see it every day.

ME/CFS is not a mental illness, but it is very much possible to cure it by using your own mind. You haven’t imagined something, thought up something, tricked yourself or the people around you; you have been ill, and this is a tool that can make you well and keep you well. Our daughter and all of us around her didn’t do anything wrong by helping her as best we could, by letting her rest. But then we wanted to try something different. And the concept we tried worked so amazingly well.

Any part of the human body can get stuck and impact our entire body in strange and terrible ways. In this case the part that got stuck is located in the brain, but that doesn’t make ME a mental illness. If anything, it is even harder to deal with the physical symptoms, since you are also fighting against the organ that controls all activity in your body. If your own brain, that part of the brain which you don’t have access to, is convinced that a little movement is very dangerous, what chance do you have without the right tools?