«This illness will last for a long time. And why is that? Because I am already prepared to die – inside»

To Mammi…

The infection came suddenly – like a bolt og lightning out of the blue. The Chronic Fatigue Syndrome, however, came tiptoeing, slowly but surely. It came to take away from me everything you might call an identity. And it succeeded. In the end I was no longer myself. I “was” a fatigue syndrome.

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Aftur Spildo

After Spildo (Photo: Private).

Introduction

A couple of weeks ago I was asked by Recovery Norway to write a text about my story as an ME patient and survivor of Lyme’s Disease and meningitis; an infection and a chronic fatigue syndrome which came to affect not just me, but my whole family. Perhaps especially my mother, Turid Spildo.

Let me start by saying that I felt very uncertain at first that this might work out at all. 

I can’t write an article like that!? For a long time I was convinced that my brain had automatically blocked out most of my memories from that time. I understand this can happen to people who go through traumatic experiences. The body responds by forgetting. All the bad and ugly has to be removed – in order to enable the patient to approach a healthy life.

Well, that was what I thought.

The truth of the matter is that the very morning after I had been handed this impossible request, thousands and thousands of images came flooding back into my memory. Suddenly I saw everything clearly before me.

I saw all those times my mother struggled to discover some alternative medication, acupuncture and other types of treatment for me.

I saw those few weeks before Christmas – when she was feeding me all sorts of weird remedies – natural pills, syrups, oils, restricted diets, herbs, etc. – in the hope that maybe, just maybe, I might get better for Christmas.  

I saw the look on her face when she said good-night in the evening, and I knew how heavy her heart was with this crisis.

Words were no longer needed. Her eyes told me how much she cried. And all this time I gave no thought to what she was going through. It was all just about me. How I was going to get well again. How much I cried and suffered because of my exhaustion. Only now – four years later – am I able to see the bigger picture.

It is true what people say; that in cases involving severe illness, it is sometimes the nearest and dearest who suffer the most.

It is true what people say; that in cases involving severe illness, it is sometimes the nearest and dearest who suffer the most. They may be the ones who find themselves traumatised afterwards. A parent, for example, may feel so endlessly much more pain than a dying child does.

It was actually my mother who went through utter hell four years ago. Her pain cannot even be compared to mine. And yet; it was me she fought for.  

So, let me start at the beginning:


Phase 1: A last cry for help

The year is 2013. I am fourteen, in year 9 of lower secondary school. It is Tuesday, the time is around 8 pm. It is Autumn and already getting dark outside. I’m in the lounge, in front of the fireplace, trying my best to focus on the text in the Food & Health textbook. There is an important exam coming up tomorrow. The first test in a completely new subject.

I need to do well now,” I thought. “If I don’t, I will make a bad impression on the new teacher, and she’ll always remember me as the student who didn’t do well at the first test in the ninth grade”. Only problem is, I’ve already had flu for almost three weeks and it’s just not going away. All my limbs are aching, and my neck is terribly stiff. I decide to do something about it, so I go into kitchen to look for some painkillers.

As I walk, I slowly but surely feel my legs beginning to buckle under me. “Am I hungry? Haven’t I got enough energy?” I ask myself.  I finally decide that must be it, so I struggle to make myself a slice of bread and butter. But as I am cutting the loaf I find myself going dizzy. The colours begin to swim. My eyesight weakens. A headache flares up again for the third time today. For a moment I am frightened. I imagine that I am undernourished from all these days of being ill, so I begin to gobble down two sandwiches as fast as I can. And then I wash down two painkillers with a big glass of water.   

That helps. But the stiff neck is still there, so I decide to read the Food & Health book standing up, not sitting down.  

As I return to the living room, I begin to feel some serious pain. My head ‘locks together with my neck’ and sends ‘electrical signals’ up to my brain. (I have no idea whether this actually happened, but this is how it felt). My legs have also ‘locked together’. I can no longer walk. They are too tired. Just one step feels like I’ve done a 10 km run in thirty minutes. I begin to get seriously afraid. Scared for my life.

“Help!!” I cry, as loud as I can. My twin sister, Myndin, comes running down from the first floor. I ask her to get Mammi.  

Mammi comes down right away, and as she gets to the living room I am lying on the settee, flat as a pancake, holding my head with both hands and crying: “Make it stop! Make it stop!”  

Make what stop?!” she cries.

Electrical. Shocks. My brain! My neck!

Mammi doesn’t waste a single minute. She calls the ambulance and tells them to come at once. This is an emergency.  

The ambulance arrives, they check my blood pressure. I am then taken directly to the hospital in Tønsberg (a town in south-eastern Norway).  Mammi begs them to let her come along. She is allowed to.  

On the way in the ambulance, I am resting in Mammi’s arms, half unconscious, half awake – and one hundred percent ignorant of what is about to become of me. She strokes my hair and keeps telling me that all will be well. “Everything will be fine, Aftur. We are on our way to the hospital now”.

Extremely tired and very confused, I wake up at the hospital in Tønsberg, where they tell me I have been diagnosed with Lyme disease as well as meningitis. There has probably been a tick located near my neck/head region that I had not discovered. It may have been there for a couple of months, spreading the infection. I am not surprised. I knew I hadn’t been very diligent checking for ticks the previous summer. However – what actually surprised me the most is the fact that I had been able to survive both these two infections, simultaneously!  

You are lucky she got admitted now!” the consultant says suddenly, turning to Mammi. “Otherwise things might have turned very nasty”.  

So … what will happen now?” Mammi asks, looking devastated. 

Aftur will get a shot of antibiotics every day for about two weeks,” she says, looking at me. “After that I expect she’ll be right as rain again.”

I smile at the thought of thinking about how quickly I will recover. Because all I want is to get back to my old self, back to Aftur before the illness.  

Little did I know that this pain had only just begun.  

Little did I know that this pain had only just begun.

Little did I know how long it would actually take. All I could think about, as I lay there in the hospital bed, was how to get a good grade on the next Food & Health test.  If I only I had known…

Phase 2: I guess this is what they call ME?

For two days I have been a patient at the hospital in Tønsberg. Despite the bland ready-made food and the white, boring walls, I am doing quite all right. The TV set doesn’t work, but I find some entertainment in chatting to the nurses and reading my schoolbooks. Mammi comes in as often as she can, bringing rolls and coffee, plus news from home.

The severe infection has paralyzed one side of my face, meaning I have to put up with a lopsided face for about two weeks, which seriously affects my mood.

Slowly I begin to lose hope.

Maybe this is worse than I thought,” is what I’m thinking. “What if I will actually NEVER be well again?”  

Maybe this is worse than I thought. What if I will actually NEVER be well again?

I put away the thought of going back to school again. Even when I am dismissed from hospital, I “know” that this isn’t over yet. I am still in pain. Walking is still difficult.  

I can’t even remember how life felt before the illness. 

Mammi, however, stays positive. Even though I now have to drive to Tønsberg every day to get my daily dose of antibiotics, she is delighted to have me back home again. After all, she is confident that as long as I get sufficient rest and proper nourishment, the illness is bound to go away again. A deep and fervent hope that good health will return like a shooting star from the sky – as long as I am fed sufficient quantities of proteins and water – is what keeps her going.  

But what were my thoughts and hopes of what would happen? Well, let me tell you – I had already begun to give up! 

After I was dismissed from the hospital in Tønsberg and opened the door of my own home, I practically KNEW it. This isn’t over! This will take a long time. Longer than anybody can imagine. And why?  

Well, because I am already prepared to die – inside; prepared to never again feel like a proper human being, a person who can walk and run around on two legs and wave her hands in the air. I am not that person anymore.


I practically KNEW it. This isn’t over! This will take a long time. Longer than anybody can imagine. And why? Well, because I am already prepared to die – inside; prepared to never again feel like a proper human being, a person who can walk and run around on two legs and wave her hands in the air. I am not that person anymore.

Bed rest for about one month was to be expected; this would be normal, according to the doctors.  

But I am now prepared to be bedridden for a whole year. I am the one who has “set” my brain to expect it. And this is how it turns out.  

My legs continue to ache for months. The headache continues. The electrical shocks behave like snakes – they wind their way throughout my whole body and bite me where it hurts the most. I can’t go into the forest to fell the Christmas tree in December, as I used to do with my brother Öde. I’m too sick. My strength runs out. I lose all my youthful energy. 

Dear reader, you may be thinking now that it was me – my own head, my own thoughts that caused this illness to last as long as it did. And I’m afraid I believe you’re right. Now, in retrospect, I can see that I practically “allowed” this illness to become a part of myself. But I didn’t understand it at the time. And it would take a long time before this notion became a conscious thought.

Now, in retrospect, I can see that I practically “allowed” this illness to become a part of myself. But I didn’t understand it at the time.

Outside it is still winter. Christmas has come and gone. We have entered a new year; 2014. I am still lying in a dark room, with hearing protection.

I guess this is what they call ME …?

Phase 3: A sinister word

It seems to me that some people – like me, for example – may tend to get really familiar with their illness or syndrome. And that things can go so far that the patient may be reluctant to let it go. As though the illness is a close friend, a mirror image of oneself, or perhaps rather – «who I think I am». For my part, I will even go as far as to mention the Stockholm syndrome – inside the world of the sick. Just like a kidnap victim may fall in love with their kidnapper, I – the sick me, could fall in love with my illness. 

Just like a kidnap victim may fall in love with their kidnapper, I – the sick me, could fall in love with my illness.

So, where am I in the middle of all this?  

I am still lying in my darkened room, and with every day that passes I become more and more aquainted with my fatigue syndrome. I take some comfort in the thought that I will never get well again. This way I can let go of all the pressure of school. I no longer have to strive to be liked by the popular kids in class. I no longer have to suck up to the teachers in order to get better grades. I no longer need to keep those horrible words «10th grade exams» screaming inside my head. It’s all peaceful and quiet now. Here with me and my fatigue syndrome. We shall sleep peacefully and undisturbed.

And then – suddenly one day – everything changes:

I suppose we must have reached the month of March by now. There is still some snow outside, and I am on the inside, counting down every day until spring. Mammi comes up to my room and sits down on my bed. She says she has something important to tell me, and can we have a talk?   

I have found a potential solution for you», she says, with a glimmer in her eyes. “There is a course called the Lightening Process”.  

As soon as I hear the name “Lightning Process”, I envisage some evil sect, ready to brainwash me with loads of unwanted hogwash. 

Just like the Scientology Church!  

Hrmpf, no thanks,” I say, firmly. “That just sounds spooky”.

Oh no!” Mammi says, looking slightly distraught. “I am sure this will be good. It has worked for lots of patients with ME! Please, come with me to England and do this course! It can’t do any harm, just to try, can it?”. “But Mammi, I don’t have ME. I’ve got Lyme disease, ok? It’s just that he doctors didn’t manage to cure me. That’s the fault of the Norwegian health service.”

Mammi looks down at the floor. She tries to find other ways of persuading me. 

Let me show you this article!

After reading the article about a woman who got through ME with the help of the Lightening Process, I give in. I decide to go, but I am not doing this for myself. I am doing it for Mammi.  

Phase 4: “Imagine that your energy is silver coloured. A beautiful silver colour. And you only want more of it. All the time”.  

Day 1
On a Tuesday, on the 22 April 2014 to be precise, we arrive London by plane. I never like flying at the best of times, and do not feel too good on the flight. But I’ve always loved London, and everything to do with England. After all, I was devouring British BBC series when I was bedridden, and so I keep my chin up.

But I’ve always loved London, and everything to do with England. After all, I was devouring British BBC series when I was bedridden, and so I keep my chin up.

I am only going through this for Mammi, and because I love England, is what I’m thinking. After all, I know this course won’t help. This is a course for people with mental problems. Not for those who is ACTUALLY suffering from something physical.

Our first night is spent at a hotel in Kings Langley; a quaint, little village in Hertfordshire, north-west of London, where the LP course is going to take place in a private house. The course is set to start in 24 hours, and here we are. In our hotel room. And we’re actually not tired. We are wide awake. Excited. Nervous.

Mammi is looking at me all the time. What does she see? My pale face? My bluish and bony fingers? My emaciated body, which makes my head look bigger?

I am not attractive. This I know. I am ill. Mentally as well as physically. My clothes are too big for my fragile frame. My hair is dry and matted. I’ve actually even spotted some grey strands of hair.  

But she says nothing, my Mammi. She is simply there, by my side, the whole time. She is probably hoping for some miracle; some magic cure to sort out her gloomy, dull daughter.  

That night I feel like putting an end to it all. I haven’t started the course yet, but I believe I know inside of me that it is not going to make any difference. And when people realise this hasn’t worked, everybody will be so disappointed.  Mammi will break down! I cannot be responsible for something like this to happen … “Why can’t I just lie down, close my eyes and disappear from the world?” is what I’m thinking. “This is what I do best, after all. Is there anything else I CAN do? In so many ways I am dead already. I am breathing, but dead all the same. A breathing corpse. That’s what I am.”

Day 2
Today I wake up in a slightly better mood than the previous day. And even though I am still convinced that this whole course is just so much poppycock, I nevertheless feel curious about the day ahead.  

What will I have to do? What sort of people will I have to take this course with? Which one of the other participants will I hate the most?

“Here we are!” cries Mammi, after we have walked a couple of very strenuous kilometres. “Such a cute little house, isn’t it?”

We knock on the door, and at once I can hear somebody leaping from their chair and running to open the front door.

“Hello, and welcome to my humble abode!!”

We are met by a cheerful English-speaking lady. She is blond, pretty and with a big smile on her face. This is Heather Thomas; the lady who supposedly is going to make me well again.  

“You must be Aftur?” Heather asks, still smiling.

“Yes, that’s me.” I say, attempting a smile.

“Well, I have some very good news for you!” Heather says suddenly, after she and Mammi has greeted each other. “The other girl who was doing the course with you couldn’t make it after all. Something got in the way… but you know; that is great for you! It must mean something. “ 

“Is that a good thing?” asks Mammi.

“Oh yes. You’d generally have to pay a lot more if you take the course just one-on-one. It is usually better, yes.”

“Oh, but that’s great!” says Mammi, looking at me with big eyes.  “I will leave you to it then. And I will pick you up in four hours, Aftur. Good luck!” 

Mammi gives me a hug, two kisses on the cheek, and waves me goodbye with tears in her eyes. How I wish I could tell you that all will be well, is what I’m thinking as I see her leaving out the door. But that would be a lie ….

Aftur, from King’s Langley, course day 2.

But it wasn’t a lie… Already after the first day of the LP course, it was like something changed inside me. And despite ALL the negativity I brought along to the course – I knew I would never be the same again.  

In the evening, I suddenly notice that my legs are a little bit lighter than I’m used to. They are not heavy as bricks anymore. My arms also feel light as a feather. And the food; I can actually taste the food – for the first time in eight whole months!  

Oh yes, I remember it like it was yesterday. Mammi and I go out for dinner at a local restaurant. I had a starter of fried Brie with cranberry jam, something I’ve never tasted before, but for the first time I find myself eager to try out new dishes. And – let me tell you – it tasted absolutely heavenly!

Never before has food tasted so good as it did that night, on the 23rd April, 2014. 

The cheese melts on my tongue, the berries in the jam are extra sweet – and the pizza we order next …. my taste buds take me on a journey to Italy, to Tuscany, Venice, Florence, Rome …  

Day 3
In the early morning, Mammi and I go for a little stroll to explore the streets of Kings Langley. I point out loads of coffee houses and cafes that MUST be checked out, as I have this desire to taste absolutely EVERYTHING! Every pie, all the scones. More and more I relish the idea that one can ACTUALLY eat everything one wants, despite sugars and carbs.

After a couple of hours into the course, at lunch – Heather and I sit outside on her porch, having tea and sandwiches. We talk about how the course has been so far, and she asks me what surprised me the most. I tell her I hadn’t expected to get such logical answers to everything. I, who’d expected this whole thing to be based on some spiritualism, was quite surprised at the distinct rationality that underpins the theory about how strongly the psyche is connected to the physical. It is simply wonderful to know that you can control your own physical health, just by making some adjustments inside your own mind!

After I’ve said this, I’m looking out at Heather’s green garden and the river. I see the trees and the leaves. For the first time I notice things. Everything looks so much greener. The colours are stronger, clearer. Life is simply MUCH BETTER!

I look at Heather, and think about when I first met her – when I was so puzzled by her smile. Because there is nothing artificial in that smile, she is completely genuine. Rarely have I seen such a genuine smile before. In fact; it is like her whole face is trying to tell me that all will be well. Why do you worry so much? You, with the whole world ahead of you!  

As Mammi comes to pick me up at the end of the day, I think she understands. She looks at me, and she understands. I am not who I was before. And I will never ever go back to that time. My brain has changed tracks already.  

I say goodbye to Heather, and suddenly – as I stand there in the doorway, on my way out – I realise who she reminds me of so much: it’s Miss Honey, the teacher in Mathilda, by Roald Dahl. That used to be my absolutely favourite book when I was little, and I always dreamed about finding a Miss Honey. And now, finally, I have found her. It’s Heather.   

Day 4
This is my last day of the course.

I wake up, brimming with energy and joy, tuck into a big English breakfast, and turn up at the course with a big smile. “I am ready,” I tell Miss Honey after Mammi has walked me to the house. Heather smiles, and makes us a pot of tea. Mammi says goodbye, and says that we’ll be going into London as soon as I finish the course today.  

“Aftur has dreamt about London for a long time,” she says.  “Now we’re finally going there.”

After the course is completed, and I have been handed my diploma, as a proof that I made it, Heather tells me something that I will never forget:  

“Aftur, you will be going back home again shortly. To Norway. Tell me, are you afraid of flying? “

“Yes. Very.”

“Ok. What’s your favourite colour?”

“Hmm … I really like silver a lot.”

“Now then, I want you to do something for me. As you’re sitting in that plane, look back at everything you have achieved through this course. Envisage the massive change that has taken place inside all of you.  

Feel this strong energy, and imagine that your energy is silver colour. A beautiful silver colour. And you only want more of it. All the time. When the plane takes you up into the air, a massive cloud of silver coloured energy surrounds you. And you will never be the same again”.  

“Ok. I will do that!” I say, smiling from ear to ear.  “Thank you ever so much. We’ll see if it helps.”

Suddenly Mammi arrives with two suitcases, informing me the train is waiting to take us to the capital. I jump out of my seat, hug Miss Honey goodbye, and tell her I will never forget her. 

When Mammi and I get into London, I pull my camera out and start to take pictures of everything. As we’re exploring the city, Mammi remarks that I’m walking faster. Without even realising it, I am walking twice, perhaps three times as fast as I could before the course.  

“Mammi, I can walk!” I cry out as we reach Little Venice. “And I’m not even the slightest bit tired! I can actually keep walking a lot more!  

Mammi waves and smiles. In her eyes I see an ocean of joyful tears.

But she doesn’t show anyone. It is the sort of thing only a daughter can see. 

In the evening, we check into Portobello House in Notting Hill; a perfectly quaint, adorable little hotel which I will never, never forget. I laugh with delight when I see there is a Victorian roll top bath tub in the middle of our suite, ready for use!  

After the LP-course. Turid and Aftur Spildo outside “The British Museum” in London, April 2014.

Epilogue

And so the day arrives when we have to leave London. But I am not sad. I know we have had a wonderful time in England, and now it is time to go home. It is time to show everybody at home the new healthy and well version of Aftur. 

On the airplane going home, I conjure up the silver coloured energy that Heather spoke about. And it works. As the plane takes off and heads into the sky (something that really used to scare me before), I just start laughing. I laugh and I laugh and I laugh. Never before had I believed that life could seem so simple, as easy as it does now. The silver colour pulls me all the way to Oslo Central Station, and then it pulls me onwards to our farm in Stavern.  

And here it remains. Right now. Even four years later, I can still feel the colour swell inside me – here I am sitting, in my little office in Sweden, Helsingborg, working with my husband. It is dancing inside me. It is what has made me write down all these words, in less than two days. Which led me to the love of my life; my husband, whom I married only two weeks ago. And how did I find this colour? This energy that was to lead me to the most wonderful things here in life? Yes, I found it through Heather, or Miss Honey – as I still call her.  

And it is all thanks to my mother (Mammi). She discovered the Lightening Process, “that scary word”, a FANTASTIC opportunity for everybody who struggles with the same thing that I did.  

To you who are reading this, who may be one of those who is lying in a dark room thinking “It’s over now. I may as well die” – I so much want you to believe that you can get well again.  

Because I once used to lie there, like you do now. And when I tell other people, many of them don’t believe me. They shake their heads and say “No, but you’ve got everything going for you in life. You’ve got it all; love, career, family, friends. And you’ve had ME? I don’t believe it!”   

Things aren’t always what they seem though, are they? If I happened to come across you in the street, you might look perfectly healthy to me. But when you come home, you may have to lie down because your whole body is aching and heavy like lead. I know how painful it is when people don’t believe you. But Heather understands, and we are many more of us who understand.  

And Mammi; I want to thank you for everything you’ve done for me. For so long, I’ve been thinking about what you’ve been through, for so long I’ve tried to find a way of thanking you. So I guess this a small attempt at one of the million things I want to do for you, to thank you for everything you’ve given me, and for everything you are to me.  

Thank you so much, Mammi.  I could never have done it without you.

Your devoted daughter, Aftur Spildo


Aftur Spildo was 19 years old when she wrote this story. It was first published on the Norwegian language webpage of Recovery Norway in 2018.

Children and adolescentsAdultsFemaleParentsME/CFSPost-Lyme disease syndromeLightning process