“For me it became vital to think that I was well, to say I was well”

This is to you, you who stood by me when I was so very ill with ME. We have not spoken since. However, you, and many others, made such a difference in my life and I never really got to thank you.

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Kirsti Dahl Johansen

In the following, I will refer to myself in the third person. I still risk emotionally reliving those traumatic years if I write about them from the first-person perspectiveSo I will write about Kirsti, who was so sick that she could not tolerate light, sound, touch or even contact with another person. And I will write about you, who helped her.


Collapse at the hairdresser

It was October 13, 2005. Kirsti had not been outside since long before summer. During the last few weeks however, when the weather was fine, she had sometimes been able to sit on the porch. But she still had to go inside as soon as the sun became too bright for her eyes.

Mostly, she felt so ill and exhausted that she had to lie down. When the pain took over, it often looked as though she was sleeping since she had to lie completely still to bear it. The hum of the traffic outside had turned into a buzzing in her ears that was present both night and day. It was getting more and more difficult to stay upright. The crutches had made this easier, but lately they had begun to weigh her down, as if they were getting heavier. You were one of those who came from Home Care in the morning to make Kirsti sandwiches and tea. You knew that she couldn’t bear long conversations, so you just peeked in and asked, in a gentle voice, if there was anything she needed before you silently left again.

Kirsti made an appointment to get her hair cut. Her hair looked terrible! Later, she would think “did it really matter?”. She had been sick with ME for six years now and during the last two years she had hardly been able to see anyone. It was as if her body was on full throttle all the time, like a car parked in neutral gear with the gas pedal pressed to the floor 24/7, not moving at all! But still, today, she wanted to do something about that sad reflection in the mirror. So she called a taxi. It was a beautiful day! The red and golden leaves of Autumn still fluttered in the trees. The car ride went far better than she expected, and Kirsti felt pleased when she sat down in the hairdresser’s chair. 

It was as if her body was on full throttle all the time, like a car parked in neutral gear with the gas pedal pressed to the floor 24/7, not moving at all!

That was when it happened. The music was playing loudly, drowning out the sound of the hair-dryers. It was the bass that was the worst, and the constant humming grew in her ears, stabbing like needles. The hairdresser was already half done applying the colour to her hair when Kirsti couldn’t bear any more. Dizzy, she had to lie down. The hairdressers had to mute the music. The hair dryers were turned off. But nothing seemed to help. Kirsti was escorted home. Walking up the stairs to her bedroom, she couldn’t even stay upright. One leg gave way beneath her and she crawled to bed. 

The whole family was stricken

During the following days, a lot happened. Nobody knew that it would be two years and two months before she would see people again, before she could make a call, before she could even be in the living room. Her children had to move out because Kirsti couldn’t tolerate sound! Not even a bit!

They had to be strong, they had to avoid straining their mother.

Her eldest son had already moved out and her other son, 19 years old, lived in several different homes over the following months. Her daughter was only 12 years old at the time. The last evening before they left, after they had packed their belongings, she and her brother tip-toed into their mother’s bedroom. They did not want to leave. They cried quietly, for a long time. They had to be strong, they had to avoid straining their mother. Maybe it was their fault that she had become worse, maybe they had not been quiet enough, maybe they had been a burden to their mother and now they had to let her have her peace and quiet.

Abruptly and brutally the family was separated. No one was prepared for this. Despite their mother having been sick for a long time, they had lived a good life. It was the worst for her little girl. She moved to her father’s house down the street. It was as if her mother were dead, but not dead at the same time. The girl was gentle and brave for weeks…for months…for years. And when it was over, when her mother came back into her life, her memories of childhood were gone.

Kirsti’s mother was 70 years old and her father was 80 when they moved in with her. All of the sudden Kirsti was no longer able to care for herself and she needed care around the clock. She couldn’t do anything but lie still. The humming and pain in her ears was now constant. Her head felt like it weighed a ton, and there was a thick, wet lump of wool behind her forehead every time she moved her head. Sometimes, she tried to count all of her symptoms, once counting more than 40 – all at the same time! This was when she stopped counting. 

Once she counted more than 40 symptoms – all at the same time!

In the beginning, she tried to write messages because she could barely manage to speak, and she became dizzy when others spoke to her due to the sound and volume of their voices. But it didn’t take more than a couple of days before the strength in her hands and arms failed and she had to give up writing. Now, she became entirely dependent on her parents to communicate on her behalf. Home Care assistants came every day, but Kirsti rarely managed to have them in her room. 

“The sister in law” who fixed everything

Youwere one of the doctors who knew about ME and who understood! At the time, many had never even heard of ME. It was so important to Kirsti that you believed her! You supported her family, gave good advice and you were there for them over the course of many years.

Kirsti had a cousin whom she spoke of as her “cousin-brother”. She thought of his wife as her “sister-in-law”. This sister-in-law organized everything. She provided crutches, wheelchairs and other things to help Kirsti. Periodically, she took care of Kirsti’s children, and she helped Kirsti’s parents. She provided Kirsti with things to cover her ears and eyes, she sewed blackout curtains, she wrote to Home Care, she maintained contact with the doctors, she facilitated everything so that Kirsti could get the peace and quiet she needed to get better.

Kirsti is scared

But Kirsti got worse. 

Youwere the nurse who helped her into the shower on New Year’s Eve that year. Kirsti had hoped that she could get out of bed on Christmas Eve, or at least get into the shower. But it didn’t happen. But on New Year’s Eve she managed. You were quiet as a mouse, your hands experienced and gentle. You helped her into the wheelchair, pushed her to the bathroom and helped her onto the shower chair. While showering, someone else changed the bedding and moved the bed to a quieter room. You took your time, and it was peaceful.

Would she die? Or worse, would she stay like this forever?

Kirsti began to get really scared. She had heard of ME patients who had been bedridden and in need of care for years. What would become of her elderly parents? Her mother cooked and her father served her food in her in bed. He placed felt pads underneath the tray so that it wouldn’t make a sound when he put it down. Kirsti mourned everything that was lost. Now, since as her children moved out, she wept her way through several of her father’s handkerchiefs every day. But she had never been scared before. Now, when she could no longer function, what would happen? Would she die? Or worse, would she stay like this forever?

In hospital

On February 5 2006, Kirsti was rushed to the Aker Hospital in Oslo. It was dramatic to be carried out into an ambulance in the winter cold. She was now so weak that could hardly eat. Kirsti’s sister-in-law had informed the hospital (both verbally and in writing) that Kirsti could not handle any sounds or light and that she was unable to tolerate certain foods. But she was admitted to the cardiology department, where emergency staff have to run in the hallways wearing clogs! No one had the time to read the instructions that Kirsti’s sister-in-law had written.

One nurse after the other came into the room and talked loudly. They wanted to take her temperature, her blood pressure, blood samples, her pulse, and an ECG. The doctors stomped in and ordered the lights on and the curtains thrown wide open. It was hell on earth! Kirsti got weaker and weaker and the pain worsened. Then youcame! You tiptoed into the room and over to her bed, sat down and whispered: “What can I do for you?”. Kirsti answered, “can you please turn of the lights? And shut the door?” After that, things got better. Everyone tried to be as quiet as they could, and no one turned the lights on. Suddenly, many of you did everything you could for Kirsti, for three whole weeks. And she got a little better.

You were there when, after the hospital, Kirsti arrived at the nursing home. While she was there, a soundproof room was being built at her own home. You had never heard of ME but it was as if you had never done anything but facilitate peace, quiet and shelter. It was peaceful, night and day.

What is pain? Kirsti experienced a pain so powerful that at one point it completely paralysed her. She became blind, deaf and paralysed from the neck down. At first, she was frightened! But then she noticed something that felt like a miracle…she was pain free! Perhaps her endorphins were responsible? What a relief! The next day her sight returned, then her hearing and slowly her body “woke up” again.

The soundproof room

You greeted Kirsti when she was admitted to rehab. You gave her soft handkerchiefs to cry into. You gave her hope that one day in the future, she would get better and that research would provide answers or a cure. During her entire stay there, Kirsti lay in her room, curtains closed. She had problems with her jaws that had worsened, making it hard to chew. The pictures on the walls began to bother her. You comforted her and told her that many people can’t handle pictures on the walls when ill. You carried the pictures out.

Kirsti couldn’t handle her stay in the rehabilitation center. Just the ride there was very taxing. When she returned home she was just as weak as she had been when she left in the ambulance. She had to be carried upstairs. But the soundproof room was finished, the blackout curtains hung and the bed was soft. It was such a relief to be back, yet it was so sad. Her mother and father were back and they were tired. Kirsti’s mother was not well and her sister-in-law was working intensely to provide relief.

A bed was made up in the room next to hers. “I can make it to that bed occasionally,” Kirsti had been thinking. But she never left the soundproof room. There was a TV in there and she imagined that she might turn it on at some point, with the sound muted and wearing sunglasses. But the TV was never used. Neither was the radio.

A couple of days after her stay at the rehabilitation center, she lost the ability to eat. Food had to be mashed. For a long time, there were only three people to help her. Her mother, father and sister-in-law provided round-the-clock care, cooking and feeding her. Metal cutlery was exchanged with plastic, which made less noise and wasn’t so cold. They used paper plates since they made very little sound when a spoon bumped against them. Kirsti could lift a paper cup if it contained only a little water. In the beginning, they helped her sit partly upright in the bed while she was fed, but after a couple of months she was so sick that she could no longer do that. She had to lie totally flat with her head down all the time. 

Darkness and silence

What is darkness? Is it dark when the curtains are closed? Is it dark when the lights are turned off? No. It’s only dark when you can’t see a silhouette or a shadow. Only total darkness relieved her. And what does total darkness do to a human being? And what would it do to her over months and years?

What does total darkness do to a human being?

What is silence? Is it silent when we stop talking? Is it silent when the TV is turned off? No, there’s no such thing as silence, not even when everyone is asleep. To live in total darkness and silence for so long…can anyone even begin to imagine that? Sometimes Kirsti could hear music inside herself, as alive as if she were at a concert. Other times she saw paintings in the dark, as clearly as if she were in an art gallery. 

To live in total darkness and silence for so long…can anyone even begin to imagine that?

What is powerlessness? Kirsti’s body was so powerless that she couldn’t move. Not at all. This would last three days at its worst and it terrified her. 

What is isolation? And what did it do to Kirsti? Her only human contact on a typical day was someone coming into her room and feeding her while she was blindfolded. No one entered the room unless she pushed the call button. For the rest of the time, she had only herself and her inner life. There were memories, with light and sounds. They were good memories. Even the memories she had previously considered bad seemed good now. It was as if everything prior to her isolation had been good. Even the cruelest moments of her old life were now dear and friendly. Because they were LIFE!

Even the cruelest moments of her old life were now dear and friendly. Because they were life!

It was a burden to Kirsti to have strangers in her room. Especially during the summer when new people came from Home Care, up to 40 different people over the course of two weeks. So her parents had to act as a filter. The Home Care people could prepare meals, but they could not feed her. Her sister-in-law fought for her to get permanent staff that could relieve them. But she only got rejections. After a while, the only ones who helped were friends and family.

You made a difference

You were one of the people from Home Care that Kirsti knew. You came to her room and treated her feet the first summer in 2006. After a while she couldn’t handle that either.

To Kirsti, it was a burden to have strangers in her room. Especially during the summer when new people came from Home Care, up to 40 different people over the course of two weeks. So her parents had to act as a filter. The Home Care people could prepare meals, but her parents still had to feed her. Her sister-in-law fought for her to get permanent staff that could relieve them. But she only got rejections. After a while, the only ones who helped were friends and family.

Kirsti looked forward to getting a visit from her children. It was February 4, 2007 and she was turning 48 today. Youwere the one who came to wash her hair in bed. You were quiet and careful. You did everything as gently as possible. Nevertheless, it would be 10 months before she could bear to have her hair washed again.

After some months, Kirsti finally got a permanent staff from Home Care and youwere one of those feeding her. You needed some light to find your way in the dark room, so Kirsti had to cover her eyes. You never spoke if Kirsti did not talk first. And when you replied, you whispered. You always made sure the food had the right temperature, you tiptoed and you never used perfume. Kirsti knew that it was you when you came, she noticed it by the calmness that surrounded you. Sometimes, she knew you were coming long before you entered the house. 

Time passed. Kirsti’s mother was exhausted. It was like being in prison – she and her husband never got a chance to leave. She wondered if Kirsti had a clue how hard this was for them. Home Care still only came for half an hour each day. In the springtime her doctor wrote a letter to NAV (Norwegian Labour and Welfare Administration) and threatened to sue. This helped.

Youwere the one who came to to Kirsti at night, when she needed to eat. She was happy that her mother didn’t have to get up during the night anymore. You had time, you had gentle hands, and sometimes, when Kirsti could tolerate a little contact, you held her hand. Then you whispered some words in the dark. Kirsti has never seen your face and you have never seen hers.

Notting Hill in the darkness

Sometimes Kirsti sang, and sometimes she shouted. Sometimes they heard her scream through the soundproof walls. But they weren’t allowed to enter her room; she could not bear to have them there. They had to wait for her to ring the call button.

Kirsti was agonized, desperate, and scared! Afraid of new symptoms, afraid of getting worse, afraid of the strain of it all, afraid of not getting better, afraid of dying, afraid of not getting the help she needed, afraid of her mother dying, afraid of those who believed that ME was “just psychological”, afraid of scientists never finding a solution.

She spent a lot of time meditating and in prayer, preferably in the morning. She imagined walks in the forest, and that she could lie on the beach or swim. She kept track of time. She kept track of weeks and days. She conjugated Spanish verbs, or French.  She played memory games with her own mind, quizzing herself with German prepositions, the names of well-known actors and Norwegian news correspondents. She developed her own word games. Sometimes she recalled movies, movies she had seen many times. It had to be a feel-good movie, like “Notting Hill” or “Pretty Woman”. She saved those for Friday or Saturday night. She removed everything with a negative association. If she didn’t, it would haunt her at nights, during nightmares. So, she looked forward to Friday nights, because then she would watch “Notting Hill” all over again, with her inner eye, scene by scene, from beginning to end. 

The children could visit their mother about once every third month and only for a few minutes, one at a time. It was an effort for Kirsti, but she longed for these moments. It might have been worse for the children. “Mom, you smell so good!” Her son lay with his head buried in her neck, tears flowing down on the pillow. Kirsti had to laugh: “Surely, you must know that it has been one and a half years since I last showered!” The boy had to think. “But you smell like mom!”

Nothing should be left untried

Kirsti had tried everything she came across to get well. Nothing went untried. From conventional medicine to alternative medicine, she tried it all. Both her mother and sister-in-law searched for advice everywhere. Youwere one of those who supported her. You had plenty of experience and gave a lot of good advice. And Kirsti received pleasant and encouraging messages from you.

Her cousin-brother was sent on missions to get various herbal remedies and supplements. But nothing helped. Kirsti grew even more intolerant to various foods and at the end, she ate only fish and tomatoes and drank juice. 

Even the air vent in her room had to be closed to remove the last bit of sound from the world outside. The window was never open for ventilation. Another layer of blackout curtains was added. She had brushed her teeth once a week, but now she couldn’t bear even this anymore. For a long time, she had used the toilet next door and walked the few steps herself. Now the toilet had to be replaced with a toilet chair. Her condition deteriorated. She thought she was going to die. She desperately wanted to get well. She felt buried alive. She wanted to die. She was about to experience her third Christmas in the dark. 

”I have good news, can you bear to listen?”

It was her mother who heard about the Lightning Process (LP). She heard about people who went to England and got help. Some of them had used crutches, others arrived in wheelchairs, some were wheeled in bedridden. Yet after three days they walked out on their own. Her mother became hopeful, and the next time she was in Kirsti’s room, she whispered, “I’ve got good news, can you bear to listen?” “Not today” was the answer. A whole week passed before Kirsti could manage to listen. But she was skeptical. 

Youwere the doctor who spoke with Kirsti’s mother and recommended LP. You had witnessed recoveries with your own eyes, and you said that LP couldn’t hurt. A family council was held and her cousin-brother and sister-in-law supported the proposal. After all, what did Kirsti have to lose?

You had witnessed recoveries with your own eyes.

December 13, 2007 Kirsti got up from her bed and walked out of her dark room. For two days, the LP-coach had been teaching her inside her soundproof room. The coach had visited her a couple of days earlier for a preparatory conversation. Kirsti had given her a maximum of three minutes. But she stayed for two hours and during that conversation, Kirsti had turned on the lights, pulled the curtains open, and the door had been opened. Finally, she had a spark of hope!

Since it had been such a long time since she had used her body, Kirsti had been advised not to use the stairs because she risked injuring herself. “Let’s kill that myth once and for all!” the LP-coach said. Kirsti went down the stairs immediately. It was a special moment. Her parents had not seen her face for at least two years. It was Advent. The lights were lit, and they hugged her for a long time. Then Kirsti went towards the front door. “No, you must not go outside, Kirsti!” her father said, “You might get sick!”. But she only laughed and went to the door, dizzy. Dressed only in a bathrobe and slippers, she went straight out in the fresh winter air, embraced the nearest post and shouted “THANK YOU!” to the starry sky. 


A long journey

This is when the work began! And it took a lot of time! It’s the most challenging job I have ever done. Several times a day, for over a year, I worked hard to keep myself on my feet. Somehow, it was like giving birth. There are few things more painful than giving birth, but birth is meaningful and, most importantly, it is vital. Yes, I can write in the first-person now. Because from this point onwards, it is good to be me telling this story.

I never went back to that dark, soundproof room. On the 13th of December this year (2017) I’ve been up on my feet for 10 years! Every day for 10 years!

It has been a long journey for me to arrive at this point, where I am now, writing to you. I’ll tell you more about the journey, about what I learned when I got diabetes, a little about how I understand the Lightning Process and towards the end I’ll briefly tell you about my life today. But first, I’ll tell you about my life long ago and about the mindset I had when I first became acquainted with LP.


Communicology

I’ve always been fond of learning. I started school a year early because I was so impatient to learn. While at university in Bergen and Oslo, I studied several different subjects at once. I started working in the IT industry and quickly took on leadership responsibilities. It was a lot of work but so much fun and there was so much to learn. At the same time, I established a family. During my third pregnancy, I started to feel pain and tiredness. I never bounced back afterwards. My doctor called it fibromyalgia. This was in 1993. But I kept working, until I went on sick leave in 1999. At the time, I was alone and caring for three children. I did not have a clue about what was wrong with me. I was bedridden for almost a year. Then I went back to work, in a part-time position. This went well for about three years before it all went wrong once again. And this time around, it was so much worse.

During my last job, I got an education in communicology*. It was a turning point in my life professionally and so much fell into place. Having this competence was, in my opinion, crucial for me and why the Lightning Process turned out so well. 

Communicology is a discipline that has studied other disciplines, such as psychology, pedagogy, sociology, anthropology and social anthropology. The material involves comparative studies of practitioners (such as teachers and therapists), methods, models, theories etc within and between various subjects and fields. Officially communicology is defined as: “The study of structure and dynamics in Communication and Change when all experience and all behavior is defined – described and understood – as communication. Communicology is thus a meta-discipline, while the Lightning Process is one of many methods within the field of change. 

I’m writing this because I’m not sure that my work with LP would have given the same result if I hadn’t had communicology as a background and framework for understanding.

When presented with a new method (such as LP), a communicologist would almost automatically analyze it to find out what it consists of. And even though I had been sick for a long time, I still remembered my “masterkeys” – the active ingredients in communication and change.

When are you ready?

In fact, I was lucky. I had never heard of the Lightning Process until my mother told me about it. And she had never heard any negative stories about people who had tried LP. Therefore, I wasn’t as scared as I might have been. I was still skeptical, very skeptical and I found the claim that I could influence my own health quite offensive. Plus, I really didn’t like that it cost money! But I gave it a chance as I had nothing to lose. 

Sometimes I have thought that it was a shame that I didn’t try LP earlier, because then I might have avoided all those years in the dark. Lately, however, I have wondered if I would have dared to try it earlier. If I had not been so severely ill that I didn’t have any other choice, would I have managed to make such a huge change?

Before I could start with LP, I had to reconsider my own “truths.” I had been ill for almost 9 years, bedridden and isolated for several years, waiting for ONE thing: a cure, a treatment that would work! My “truth” was that the only thing that could help me was a medicine. After the first conversation with the LP coach, I became aware that there might be another solution. I can never thank her enough. She had been bedridden with ME for many years herself and had managed to make herself healthy again. Why shouldn’t I be able to do the same? Previously, I had learned a lot about how powerful “truths” can be, how beliefs, doubts, myths and facts (or what we believe to be facts) can influence us. Being bedridden, I had been unable to assess my own “truths.” The LP coach told me stories about placebo treatment, studies in which people who believed they had received chemotherapy (but hadn’t) had actually lost their hair. “Truths” could actually result in powerful physiological changes. I started to believe her.

An unfortunate “truth”

I began to think about that time in 2005, when I had just received the ME diagnosis. I was in a wheelchair. There was a physiotherapist who told me that he believed that I would never go skiing again. I asked the question, “Do you think I’ll ever be able to go skiing again?” His answer did something to me. I became depressed, really depressed. The thought that I would never get well again became the “truth.” Not long after, I had a bad relapse. My physiotherapist only wanted the best for me. He spoke as a professional drawing from his own experience. He didn’t know what it did to me. 

There was a physiotherapist who told me that he believed that I would never go skiing again. He didn’t know what it did to me. 

But now I started to wonder, would I have become this ill if the physiotherapist had told me that I would get well?

I barely understood what the LP coach meant when she asked me if I WANTED to get healthy! Of course, I wanted to! 100% healthy! But what did it have to do with the matter? My body didn’t work!

“I CAN MANAGE TO MAKE MYSELF HEALTHY!” That was the belief that made me turn the lights on for the first time inside my dark room. That thought alone made me feel better. I had to chew on it for a couple of days, and then I chose it as my “truth”.


Getting back to oneself

I wasn’t myself after all the years in the dark. It was a shock to both body and mind to be active again and to use my senses. My mother was exhausted, she had used up all her spare energy. She and my father went home and my cousin-brother moved in to stay with me instead. I had just been granted a personal assistant for a few hours every day and she helped me in every way. The reunion with my children was both painful and pleasant. I had hoped to celebrate Christmas with them but I wasn’t strong enough. I felt confused, as if I existed somewhere between a dream and reality, as if life was tinged with gold. The sky had never been that turquoise and the worn old wallpaper was never that shade of gold! 

We celebrated Christmas Eve and my cousin-brother and I were the only ones at the table. For dinner, my sister-in-law served the best ribs (a traditional Norwegian Christmas dish), that I I ever tasted. I had dressed up and my pretty, black shoes, which were almost new when I become ill, sat on the floor next to me the whole evening. If someone saw me, they would believe that I had just taken them off. The truth was that my feet did not fit in them. It took several months before my feet were back to their normal size again. After the meal, I unwrapped my Christmas gifts, and those from the year before, and those from the Christmas before that again.

It was a painful process for my body. I was hurting everywhere but in a different way than when I was sick with ME. After a couple of weeks, my one leg began to ache more than the other. A nurse suggested that I use compression stockings, so I tried that. Four weeks later I was still limping. My father and I went for a walk around a lake in Oslo and my leg hurt so much that he thought I should get an x-ray. As it turned out, I had a stress fracture in my leg. And I thought “HURRAY! I have a totally normal fracture and there is a clear reason to be in pain!

The first time I went running, something happened. I have never been fond of running but because I had longed for it, I put on my brand new sneakers and went for a jog around the lake. And how I wept! From joy!

Slowly, both body and mind were restored. I felt quite a bit of sadness. It was as if I couldn’t get over what I had been through. And I was scared, scared to go out the front door, to take the bus, to do too much, to get sick again! It was a daily struggle to keep myself on my feet. But I managed, with the help of LP.  After a couple of months my personal assistant was able to leave. I was on my own. 


A sober, but elegant tool

So, what is the Lightning Process? LP consists of the same key factors (“masterkeys”) that are present in all kinds of change processes. Whether in individuals, groups or societies, there is a certain set of factors, conscious or unconscious, that enable change. The Lightning Process is about taking a pause, learning to stop completely and being conscious about some essential things about oneself. Where am I now, as seen from the greater perspective, as seen from the outside? What choices do I have? What are my “truths” about myself? Which possibilities do I have to achieve what I want? Maybe I need to negotiate with myself. Maybe there are some “truths” that are no longer valid or useful that should be exchanged for others. No matter what, it all comes down to making a decision, a congruent decision, and then to develop some strategies. And it’s about acquiring the power and motivation to put those strategies into action.

In addition, the LP student learns how to distinguish between “me” and “you,” between other people’s attitudes, values and “truths” and their own. 

All of this leads to changes in thinking patterns, behavior patterns and perhaps even language patterns. A lot can change when people break old patterns. With LP, they learn how to use their senses effectively, especially visually and when working with inner images. The teaching and learning process is made more effective by standing, walking and moving between different positions while working with their inner self. This stimulates the neuro-motoric foundation, which is most likely run-down in people who have been ill for a long time. Neuro-motoric training, such as in diagonal and rotating movements, help make learning easier and better.

There are many methods for achieving change that address several of these key factors (“masterkeys”) in different ways. The thing that makes LP special, in my opinion, is that it involves so MANY “masterkeys” and at the same time applies them in an EASY way. So easy that it seems simplistic. When people who have been severely ill experience such radical and exceptional improvements in only a few of days, it is often perceived as miraculous. However, LP is only a tool, one that elegantly enables people to become aware of, and tap into, resources which are inherent in humans (and have always been).

Kirsti with her daughter in 2009, one year after recovering.

Afraid to get ill again

I was terribly afraid of getting ill again. The whole first year, I worked hard to stop this fear and replace it with an inner calmness. It worked. 

The LP coach had taught me that stress is taxing to the immune system and it’s important to train with LP until it becomes automatic. A little like learning to ride a bike.

For me, the work was all about stopping and doing LP every time I felt abnormal exhaustion, pain, or any other symptoms. Every time I felt stressed, due to fear or frustration or whatever, I had to stop and do LP. When I had a thought that could lead to stress, for example “oh no, now I’m getting worse again!” I did LP. I didn’t do much more than LP for a long time. 

One of the strategies I used to avoid stress was to avoid contact with people who thought that I would relapse, or that I could never get well or that I had never been sick at all since I was so healthy now! So I avoided everywhere that ME was discussed, stayed away from all forums on the internet etc. It was too taxing. It is only now, with the backing of everyone in Recovery Norway, that I dare to write this. 


It is all connected

My blood sugar levels rise when I get stressed!

A year after I got back on my feet, I was diagnosed with a form of diabetes (LADA which is short for Latent Autoimmune Diabetes in Adults) and while being treated for breast cancer a few years later, I developed diabetes type 1. Does this have anything to do with ME? Who knows? I’ve had allergies and asthma since I was a child. I’ve had hypothyroidism that affects my metabolism for 20 years. ME is reportedly not an autoimmune disease but the immune system is reputedly involved, as one of many organ systems.

What I realized when I had to measure my blood sugar frequently each day, is that it rises when I’m in a troubled state of mind. As long as I am calm and/or happy, it remains fairly stable. My blood sugar levels are, of course, affected by what I eat and by muscular activity. But even when I have good control over my carbohydrate intake and the amount I exercise, they rise when I get angry, or if I’m sad or frustrated. The worst is if I am scared! Fear has a clear impact on my blood sugar, in addition to fever! Both result in really “all time high levels”. 

I’m saying this because it has taught me something about how difficult it is to distinguish between the physical and the mental. My emotional life has an immediate impact on my blood sugar levels! So maybe my emotional life has an immediate impact on a number of physical factors, even if they can’t be measured. Is it possible that all diseases are affected by our emotional life and that symptoms are worsened by, for example, fear? Could everything be connected to everything?

Yes, I’ve been through chemotherapy and radiotherapy over many long, rough months. Still, it was nothing like being severely ill with ME. Nothing!


The thought can control the emotion

I understand that it may seem strange that THOUGHTS can influence health. It might seem too simple. 

On the other hand, the idea that FEELINGS may result in physiological responses is something most of us can relate to. Everyone has experienced blushing when something is embarrassing. Or if someone really dreads something, the need to stay near a toilet might be familiar! The idea that FEELINGS influence health is generally accepted. Chronic stress may trigger a number of disorders, which has unfortunately become a social problem. It’s really important to reduce stress, to get all the negative feelings that lead to stress under control, such as fear, frustration, irritation, low self esteem, sadness etc. This is where THOUGHTS become so important.

By THINKING we control our FEELINGS! If I think about all of the things that may lead to a ME relapse for me, or that I might get cancer again, I’ll get scared! The more I think of it, the more scared I get, the more stressed my system will become and the more my blood sugar levels will rise!

It must have seemed strange to those around me when I declared myself healthy right after learning LP! Perhaps youwere one of those who had visited me in the dark room who met me later in passing. Perhaps you asked me how I was and I answered that I was fine. Perhaps I felt quite bad just then but still well enough. Like the famous glass of water – should I think of it as half empty or half full? The way it affects me depends on how I choose to think of it.

To me, it was vitally important to think of myself as healthy and to say that I was healthy. As soon as I thought I was in bad shape, a lot of negative responses rapidly started to interact. First, I was scared. Then I got stressed and tired. Then the thought “now I’ll be bedridden again” was just around the corner. I couldn’t allow that to become “truth!”  

When I look back at the first years after I got back on my feet, I was far from well. But my health was drastically improved and I had fully recovered my quality of life. I kept my thoughts of all the things I couldn’t bear to do to a minimum and I didn’t speak of them 

Unfortunate myths

Unfortunately, there are lots of misunderstandings and myths about the Lightning Process. It’s a shame that those misunderstandings are presented to patients with ME. There’s no point in asking a person with ME to think positively or to pull themselves together! That would create yet another stressor. 

When LP is portrayed as an ideology, reminiscent of a “religion,” and when those who have learned LP are called “The Congregation of LP,” people will of course become skeptical! When this becomes the image of LP, it is because the information available about LP has not been good enough. At the same time, I can understand that it may sometimes seem as if those learning LP may have been manipulated into an artificially elevated mood. But the urge to cheer about it understandable after recovering from such a serious illness. It may at times seem a little unusual, but it’s only pure joy!

Alt hemmelighetskremmeriet som regjerte rundt LP i noen år, var antagelig ikke noen klok strategi.

All the secrecy that has surrounded LP for years was probably not a good strategy.

All the secrecy that has surrounded LP for years was probably not a good strategy. The fact that it costs money is also a source of friction. Those who have been ill for a long period of time often don’t have much money and not everyone can afford LP. That is discrimination!

The attitude of Recovery Norway is that we don’t acknowledge the artificial division between the physiological and the mental. ME is a very severe, disabling illness, that involves strong physiological reactions AND that some people get well from ME with the help of cognitive tools, like LP.

The components of LP are not dangerous

A severe relapse of ME is deeply tragic, no matter what the cause. When some patients with ME try LP without getting better, it is sad. When some of them even report getting worse after trying LP, this is a good reason to investigate and find the cause. 

When some report getting worse after trying LP, this is a good reason to investigate and find the cause. 

The individual components of LP are not dangerous. LP by itself, in my opinion, is not dangerous. However, there will always be a weakness in every method. The method can become too rigid, or lacking in flexibility or it can be poorly adapted to the needs of the individual. The interaction between teacher and student is important. It can be important that teachers have a good support system behind them, which is not always the case. It is equally important that the student has a good support system around them, which, again, is not always the case. There are a lot of factors to be investigated if one wishes to determine why some people get worse after trying LP. 

However, to me, the most exciting question of all is: What makes so many sick people benefit from the LP? 

For eLP is a general tool or a method of change that, in principle, can be effective in any change process and in other diseases. I’ve heard about people recovering from chronic pain after amputation with the help of LP. I’ve heard of people getting rid of disabling anxiety and even some who recovered from post-traumatic stress disorder. I personally know someone who, in adulthood with the help of LP, found a solution to her asthma, which had reduced her quality of life since childhood. However, the majority of those who have benefitted from LP seem to be patients with ME. 

What can we learn from those who have recovered from ME with the help of LP? What has happened in their brains and within their system that has made this possible? I hope researchers will get curious about THAT.

I truly hope that the positive effects of LP and similar tools is documented. I hope that the tools will be officially recognized, made available and customized for patients with ME and others that suffer from “medically unexplained” conditions. I hope that the negative consequences that may sometimes result from the use of these tools can be avoided, that the tools can be accepted and recommended by doctors and covered by insurers and healthcare systems.


What is it to be well?

Sometimes, people ask me if really am completely healthy. How can I receive disability benefits if I’m healthy?

Well, what does “healthy” actually mean? People have different opinions about this. Some believe it is about performance in everyday life. I work a few hours now and then, from my home office. I have a big family and friends that I spend a lot of time with. I make dinners, I help the children with little things, I sing in a choir. In short, I feel I am contributing! And it feels wonderful!”

I consider myself healthy after the ME episode that I endured for nine years, from 1999 to 2008. I no longer meet the Canada criteria for a ME diagnosis. But I do have quite a few issues. I have become very vulnerable to stress and I have less energy and less capacity than I had before I got sick with ME. Sometimes it’s difficult to sort out what is what, since I have many diagnoses, take hormone medication after cancer and take many medicines for both metabolism and diabetes. But both are more or less well-regulated. 

Good relationships are as important as good health. That’s my “truth.” I think that having good interactions with those around is good for health.

You might remember my parents. My father died this spring. I’m so grateful that we had some good years together after the difficult ones. He lived until almost 92 years old. I don’t think he ever got over the fact that I had become so much better. He could hardly believe it. “How are you, Kirsti?” he often asked. “I’m okay, Dad!” I answered and he got tears in his eyes. “REALLY?” My mom is well. She and I are in a good place, and we have a lot to enjoy. 

I don’t know if I would have survived without the help of my mom and dad or without my cousin-brother and sister-in-law either. I can’t ever express how much they have all meant to me. It was just as big a change for them as for me, both when I got sick and when I got back on my feet again. 

Deep down they were likely afraid that I would have a relapse. But they understood how important it was for me to not talk about it. They supported me through it all then and during the years that followed! When my daughter moved back home with me, half a year after I had left the dark room, they expressed no doubts. They just cheered for me. They never told me to take it easy! They rejoiced in every step I took towards wellness, big and small.


I hope that what I have written can bring hope to those that are still sick.

And dear you, who was there for me when I was seriously ill, it meant more than anyone can imagine. Thank you very, very much! Know that you are appreciated!

Kind regards, Kirsti.

AdultsFemaleVery severe ME/CFSSevere ME/CFSME/CFSFibromyalgiaChronic painTinnitusLightning process

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