Linn Kathrine Skaret-Johnsen

I met Frode on a warm day in July 1995 when I was 18 years old. We fell in love with each other and had no idea about the reality we would be thrown into two years later. Until then we lived a life without worries. We dreamt about a future with education, work and children.

Already in my childhood I felt that strange things happened to me. Friends have told me that they remember that during games and play I could just collapse and at high school I began to feel the fatigue. I had always an explanation and I used to blame it on the fact that I did a newspaper round before school started. But the fatigue was not just that I was tired, it was more extensive. I had no idea about MS at this time, I had hardly ever heard about MS.

During the next year more frequent symptoms indicated that something was wrong. Half the side of my face grew numb for a long period of time and also other parts of the body grew numb now and then. It was difficult to explain these things to others. During the summer of 1997 my left arm gradually grew numb and became paralysed at the end. I also got neuralgia and at last I searched for a doctor. Both Frode and I were confused the day, a month later, when we sat at the hospital and got the message that I got MS, Multiple Sclerosis. Both of us had just started studying and there were no space for MS in our lives. Immediately I dissociated myself from the diagnosis and after the doctor's appointment I went straight to a lecture I had at the university.

I was quickly reminded that my life had changed direction. In the early phase of the disease it became a Relapsing-Remitting MS with increasing frequently and intensity of the attacks. The attacks wear and tear me just as much as the disablement that came with it. I tried several forms of disease modifying therapies for MS such as Interferon Beta-1b (Betaferon), Glatiramer acetate (Copaxone) and Octagam, but the progress quickly got worse. Me and my health advisor had hoped that the progress would calm down but the disappointment increased with the frequently of the attacks. New additional symptoms appeared for each new attack and there was less recovery time after each attack.

After three years with this form of progress, the situation had become very critical. We realised that traditional treatment had no effect on me. After a consultation with the Neurological ward and Cancer ward we decided to start with an immunosuppressive drug; mitoxantrone (Novantrone).

To start with cancer medicine was no easy decision for me as in spite of it I was to become paralysed. At this time there were several conditions that became of vital importance for the decision. The fact that I was young (22-23 years old), my health and my low weight (only 40 kilogram) were conditions that were against the decision at that time. There were also other conditions that I felt were important. These were things like the side effects with this treatment, the capability to be pregnant, the possibility to loose my hair and damage to the internal organs.

I realized that we were not capable of having children in the condition I was in anyway. The side effects of the cancer medicine became less frightening as the progress of the MS gave me more frightening experience. It was harrowing to stay face to face with the MS and realize that I needed stronger treatment and that I was no longer capable to take care of myself.

Besides being my boyfriend, Frode had become my personal domestic help. Even if the daily routine had become tough we kept the humour and the good chemistry between us. Everyday there was laughter and we had a good relationship. Of course I was worried about Frode and had a lot of bad conscience for him. I was afraid that he would leave me and find someone else he could have fun with and who was not handicapped and needed daily help. Frode did not understand my concern. He had never thought he would leave me. He said I were the same Linn with or without the wheelchair. He said the same thing he said when I got the diagnosis back in 1997, that he always will love me and stay with me no matter what.


I was the first MS-patient in Norway to take the treatment of mitoxantrone / Novantrone in August 2000 (until then this form of treatment was been very controversial in Norway). In advance there were several preparations such as ultrasound of the heart and lungs and blood tests. The dosing were 12 mg/m2 with a total dose until 150 mg/m2. I got the treatment every second month at the cancer ward the first year. The next two years I got the treatment every third month. My total treatment was more than three years. I had my last treatment in October 2003. In August the same year Frode and I got married. We had a big wedding with 180 friends and family as guests.

Today in 2005 my treatment is Interferon beta 1a Avonex. I did not get any attacks during my treatment with the cancer medicine. That gave me the opportunity to slowly build myself up again and I became stronger every day. I had physiotherapy twice a week and I did exercise every day. The positive progress became greater than we had expected.

My life is radically changed today compared to just a few years ago. I have recently returned to studying again, I am studying psychology through the internet. I can almost live a “normal” life again and I have accepted that MS is a part of me but not more than that. I am so much more than just MS. I am Linn. MS is just a small part of my identity. I have a lot of other roles in my life that means so much to me. I am Frode’s wife, I am big sister and little sister, daughter, daughter-in-law, friend, customer in stores etc.

I am very humble and thankful that I am so well today. That is not for granted. I live with the unanticipated in the highest degree. As the situation is today I will live with the MS for the rest of my life. Even if I do not have any visual handicap today I still feel the exhausting existence of the disease. I cannot predict the future. I do not want to know anything about the future. I live my life here and now and will not throw away my strength preparing for things that may not happen. I can only make the best out of my life when I got it.

And so I do.


27. August 2004
I released my book about my life with MS. This is the first book in Norway where someone with MS describes how it is to live with MS. On the same day I received the first MS award in Norway. The reasons for receiving the award were among others my openness about MS and that I gave MS a face.

The book ”Thanks, it`s going well. - But the MS Ghost is harassing me” (translated directly from Norwegian) started with my diaries. I have always written diaries but when I got the diagnosis in September 1997 I wrote even more. The diary became my private little psychologist that helped me to put all the painful thoughts and feelings behind me. I am usually an open person but I kept all the difficult feelings inside myself in the belief that I protected those around me.

After a while I let friends and family read my diary so they could gain an insight into my more and more difficult life. The most painful things however people could not read about because I even protected myself through refrain from writing about it.

When a lot of family and friends had read my diary some of them asked if I would like to write a book about it. That was never in my thoughts. I felt that only the people that were closest to me should have an insight in my life. I felt to much shame about the things I wrote so I would not share it with strangers. I would not expose my private life. I believed I was alone with this disease though I knew inside that there were a lot of people who shared the same disease.
As the time went by and I begun to know other people with MS and their families, I realized that we had the same thoughts and worries. It is in particular important for us with MS to be understood in the society and people around us, though it is difficult for others to understand. Often we meet comments like: ”Yes, I am also tired” and ”Well, we all have our problems.” etc. Then you lose your courage to talk about your worries that often is more in-depth than just being tired. We try to comfort ourselves that it is just ignorance and that most of them means it well.

When I at least started to write the book I decided to show one of the many faces that MS has. I would open my diary for everyone that was interested. In every person that has got MS there is a story and this is my story. I would like to share it with you in a attempt to contribute to more openness and knowledge about MS.

If you would like to contact Linn please send your message to info@msif.org and we will pass on your e-mail.

”Thanks, it’s going well – But the MS Ghost is harassing me” ISBN 82-92400-13-3 is published by ”Communicatio forlag”, Trondheim, Norway. The book is now planned to be rewritten into a theatre play. You can buy this book at http://www.bokkilden.no or at http://www.norli.no