Today, we rarely think back on the ME illness that our daughter suffered from, but we do get the occasional flashbacks when we come across tragic stories of children incapacitated by ME.
I feel the despair both of the parents and the children, and before our own experiences are all but forgotten and put behind us, I would like to recount our story. Today then, as I read the diary my wife kept and I retrieve the newspaper articles we cut out five years ago, I see that, regrettably, very little has changed both with regard to the symptoms and the conflicts about what ME actually is.
From bad to worse
Our active daughter was one of the youngest people in Norway to be diagnosed with ME in 2011/12. Following a bout of severe cold and what was later diagnosed as Mycoplasma, we sent her back to school again as usual in November 2011. This month she also participated in the club championship cross-country run with her friends. In retrospect we recognize that we should have kept her home from school and not allowed her to do the run, but she had always been such an active and hardy girl who never let a cold stop her from doing what she wanted.
Our active daughter was one of the youngest people in Norway to be diagnosed with ME in 2011/12.
The unusual thing about this Autumn was that she never really recovered. On the contrary, she gradually became worse, with ever more frequent onsets of headaches, nausea and listlessness. She would eat less than she used to because she felt so nauseous after meals, she became very pale and lost weight. This led us to run the gauntlet of GPs and hospital specialists. We changed our GP when we suspected it might be ME, but we were brushed off and told it was not a proper disease. The only food intolerance she was diagnosed with was milk intolerance. Other than that she was apparently healthy; based on the tests, that is.
Gradually, however, her condition worsened. Not least, she had more and more nights where she would wake up frequently and get very little sleep, which of course impacted on her daytime activities. From being a lively and active girl who was very happy at school, she ended up sitting listlessly at the kitchen table, looking out at all the children playing outside. She was exhausted, nauseous and had headaches and had no energy to join in their games. It hurt a father’s heart to see her this way.
The first ME specialist we saw told us a story about the first ever ME patient he had diagnosed, who had become absolutely furious and stormed out of his office. He’d happened to run into the same man several years later and asked him how he was doing. The man told him that as he walked out the door of the doctor’s office he had made his mind up: No way was this b… disease going to ruin his life! He had battled the disease mentally on his own and finally managed to get well again. I recall this story vividly, six years later. Was it actually possible to eliminate ME through mental processes?
We contacted the ME association, who recommended large doses of rest in order to get well again. … We were told that being active one day would result in severe repercussions the next day and might prolong the decease.
My wife and I googled and trawled the internet for solutions and help. We contacted the ME association, who recommended lots of rest, and calm and quiet in order to get well. They also informed us of the various kinds of remedies we might need some day: blackout curtains and wheelchairs. We were told that being active one day would result in severe repercussions the next day and might prolong the disease.
My wife joined a closed Facebook group for ME mothers. Perhaps it was only open to mothers because fathers might have had a more critical view of some of the things that was presented in this group? These desperate mothers kept vigil over their children and spent thousands of Norwegian Kroner on expensive papaya diets, oatmeal extracts, vitamins and – in some people’s opinion – dubious treatments to heal their children. Many sent blood samples across the world to confirm that they had ME, and tips about good doctors and possible solutions to the ME enigma was shared by mothers who left no stones unturned in their effort to help their children.
My wife was told by the Facebook mums that the LP method was directly harmful and a waste of money.
When we discovered that several ME patients had regained their health by trying the Lightning Process (LP), my wife was told by the Facebook mums that the method was directly harmful and a heavy financial drain (NOK 15,000 at the time). When we decided to give LP a try after all and our daughter gradually regained her health, my wife posted a story on the forum about her recovery back to full health three times. The first two postings were greeted by the mums on the forum with comments like: “Good for you, but your daughter did not have proper ME if she got well through this method” or “We tried the LP, but our son/daughter got worse”. The third time she tried to share the good news my wife got blocked from the group.
Bickering about setting limits
The different approaches to the ME also became a seed of conflict between my wife and I. I felt that our daughter needed to keep up a certain degree of activity, to avoid just lying on the sofa the whole time. I feared her body would ‘close down’ and stop functioning. My wife felt rest was the most important factor, and believed this might alleviate the sickness by and by. Not only did we have a sick daughter, but there was also more friction between us parents than usual.
One episode of disagreement was triggered when our daughter was about to get a visit from a good friend of hers who lived far away. For how long could they play together? Fifteen minutes? A whole hour? Was there any point in travelling for miles just to play for fifteen minutes? Summer had arrived, the illness seemed to be stuck since November, and all the time our daughter’s health grew worse. We had agreed to take the friend to a lake about a mile from the nearest parking lot. I carried my daughter on my back. They bathed together and enjoyed themselves. My wife called our daughter out of the water after fifteen minutes, whereas I felt she was being energized by the water and was able to forget her illness for a few minutes. This episode illustrates how I believe many parents of children with ME feel. How much activity can my child tolerate? How do we agree on common rules?
How much activity can my child tolerate? How do we agree on common rules?
At about this time we had come across Live Landmark’s book “Wake me up when it’s over”, which became an eye-opener for me, and gradually also for my wife. Even though she was sceptical, we made contact with Landmark, and through her we came to hear about other families with children who had recovered from ME through the Lightning Process. We phoned 5-6 families – and these are conversations we will never forget.
The decisive conversations
Parents from different areas of the country told us dramatic stories about their children who they had feared would die from ME. One girl in Stavanger and one in Mo i Rana in Norway lay bedridden behind closed curtains in darkened rooms. One girl was fed intravenously, but then developed an allergy against this type of nutrition as well. Both had to be lifted out of bed to be changed and lifted back in. Previously lively girls had to be regularly turned in bed to prevent bedsores. Young girls without a life.
The girl in Mo i Rana had not spoken for seven months and her parents were terrified she might soon pass away. As a very last resort they decided to give the LP a try. Following a forty-minute conversation with LP instructor Live Landmark, the curtains of the bedroom were lifted a little to allow some light into the room. The next the day their daughter was wheeled into the living room on a flat bed, and asked for dinner for the first time in years. On that day she opened her Christmas presents and Confirmation gifts that had been accumulating for so long.
We phoned 5-6 families – and these are conversations we will never forget.
As we spoke to the mother on the phone we heard a “Bye-now” in the background, and the mother interrupted our conversation to ask where her daughter was going: “I’m going roller-skiing”. Today Emilie Kalkenberg is a dedicated and hardworking athlete in biathlon in the top league in the country, and her whole story with ME can be found in Dagbladet (Norwegian newspaper). All the same, I would like to include a quote here:
“´We tore the drip out of her and fed her liquid food and drink from syringes. We could only get her to ingest tiny mouthfuls at a time. It makes me shiver to think of it today. I can barely understand how we coped. It was dreadful the way the medical professions were unable to help us´, says her mother, Trude Kalkenberg.
For more than seven months the undernourished, pale and sick Emilie lay immobile in a dark room. She tolerated no sounds, she was unable to speak and she had to be turned over in bed every other hour, night and day, to prevent her from getting too many bedsores. Not a single word did she say at the time. Her parents didn’t even know if she could still speak”.
Ingenious or banal techniques?
The conversations we had with these and three other parents made us decide to take the leap of faith and try the LP. What did we have to lose? We feared that our daughter might get worse, but decided to risk it after all. We were recommended an instructor and followed a three-day course together with our daughter. The course seemed so simple that I almost felt it was banal, and it seemed very strange how this might work? But mental techniques do not have to be all mumbo-jumbo, and I have later looked further into mental techniques in general and often found that the simple solutions work the best.
This course helped us in so many ways. Our daughter felt that she gained more control over her own situation; that she could contribute to getting well again. She received an assurance that this would end well. My wife no longer spent her time diving into symptoms and trawling the net for cures to ME together with the other mothers.
It was a matter of two steps forward, one step back; but our daughter used the techniques regularly and gradually became better
As parents we were given a wise word of advice by a third party and agreed on a common course ahead. There was no correct or direct way out of this illness, it was all a matter of two steps forward, one step back, but our daughter employed the techniques regularly and gradually improved. After a while she got fed up with repeating the techniques, so she found her own method/change of focus when the symptoms resurfaced. If she was playing with one toy, she would find something else to play with if she began to feel sick and getting headaches. She could also change the place where she was playing and the more she countered the signs with active changes on her part, rather than lying down on the sofa and giving in to the symptoms, the more she understood how important it was to distract the brain in a positive manner.
The restrictions that washed away in the sand
We had agreed to swap houses with some friends in Spain that summer, but as our daughter was unwell we had wanted to cancel the trip. However, we had heard about people with ME that had become better after a holiday in the sun, so we decided that a change from the sofa at home would be helpful. Having taken the LP course at the end of May we headed for Spain with high hopes a few weeks later.
The swimming pool in the Spanish garden was a huge success. Our daughter spent longer and longer time in the pool, and the more she swam the more energy she seemed to get. Despite the fact that a few symptoms still remained, we never cared about restrictions any more. They were simply washed away.
When she went back to school that autumn, it was almost a year since she had attended school full time. We discussed with the teacher and agreed that she should be allowed to go home at once should she feel unwell. But our fears proved unfounded, and she never came back home before the last school bell.
From ME patient to active athlete
Today our daughter attends a school for top-level athletics and is an active sportswoman who trains six days a week. To her, the ME illness is a thing of the past, and neither she nor us parents are worried that it will ever return.
I am often struck by the contrast to what her life might have been. She might be spending her life behind closed curtains in a dark room. Instead I am forever grateful for all the time and quality of life we get to share in her formative years. Just think about all the laughter and the nice trips and conversations about difficult choices which youngsters with ME lose out on. Today, my daughter is the one who pushes me to get up from the coach and out the door to train, even when it is dark and cold outside.
Attempt at a conclusion
Many people are convinced that ME is a physical condition, and the ME symptoms are definitely real and with physical impacts. Very often ME follows a prolonged bout of mononucleosis, mycoplasma and similar infections.
I am neither a doctor or educated in the medical professions, but as a layperson I will say that ME is a physical as well as a psychological illness. Psychological illnesses still carry so much stigma that we will quickly deny that ME is at all related to our psyche. However, our psyche and our physical bodies are closely interwoven.
Our LP instructor explained this in such simple terms that our eleven year old understood it: the body is fighting an illness that is no longer there, because the brain has become stuck on fighting a previous illness with all means. Now the brain needs to unlearn this faulty connection.
Psychological illnesses still carry so much stigma that one will quickly deny that ME is at all related to our psyche. However, our psyche and our physical bodies are closely interwoven.
I see ME as a derailed train where the patient needs to get back on track. A mental/psychological technique is required to get the physical body well and back in operational order.
I am sure there are many methods people can use to get the brain “back on track”, but the cognitive tool we used, which was the LP, worked for our daughter.