“I was told I could not, but I did”: Marit Koma Egseth and living in Norway with a disability

Marit by a lake outside Steinkjer. Photo: Marit Koma Egseth
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These are firsthand insights about living in Norway with a disability.

Marit Koma Egseth is a badass Norwegian woman with cerebral palsy.

She lives life to the fullest, focusing on being positive and facing challenges as they come.

In a sea of high-profile interviews with politicians and celebrities, sometimes we need to hear a different type of – but equally, if not more, powerful and important – voice.

This is Marit’s story.

Meet Marit, a lively lady with an infectious smile

“I am 57 years old. I was born in Bryne, which is in the Jæren area of southwest Norway. Bryne is where my siblings and I grew up. I am the oldest of four.

“I currently own my own apartment in the village Hommersåk, in Sandnes munimunicipal area. It’s a caring and nice community which I really like.

“In my free time, I love to take photos and write about what happens in my life. I like going for walks. I read books with a love for crime books in particular, and watch films, and most of all – I love being with friends.

“My favorite Norwegian food is without doubt komle! My favorite Norwegian dessert is tilslørte bondepiker. Layers of apple jam, caramelized breadcrumbs, and whipped cream make up the dessert.

Marit with waffles
Merit enjoying another classic Norwegian dessert. A friend took this photo during a past summer day trip to the site Helleren, an old settlement under a huge rock. Photo: Marit Koma Egseth

“I am a widow after my husband Greger. I have one daughter from a relationship before my late husband. Kathrine is now 24 and lives on her own, a 30-minute drive away from me.

Marit and Kathrine
Marit and her daughter Kathrine in Cannes in 2010. Photo: Marit Koma Egseth

“For three years now, I have had a boyfriend named Musa from Gambia. I last saw him in April of last year. He tried to apply for a visa but UDI rejected it – we were extremely sad.

“Gambia has now opened their borders, so I have my ticket ready for the end of November! We are so excited and happy with the prospect of finally being together again. I don’t know how long I will stay. Corona decides.

“I was formally diagnosed with cerebral palsy (CP) when I was 3 years old. It’s dyskinetic CP, where muscles move involuntarily. In my case, it’s because of core icterus that happened when I was two weeks old, and I had jaundice that wouldn’t go away. My mother had to stay five weeks at the hospital with me where they tried blood transfusion three times.

“My friends and boyfriend all say they don’t see me as a disabled person. They see me as me because they are used to me as I am.

“I am a woman who is strongminded and independent.

“I have lots of humor, and I am honest and myself always.

“As a friend I am helpful. I try to be a good listener and love spending time with my friends.

“As a girlfriend, I am caring, passionate, and a little bit jealous. I want my man to see the best of me.”

Ups and downs in Norwegian schools

“During my first two school years, I attended a special school for disabled children. In those days, it was normal to send a disabled child to a special school for the disabled. 

“However, they soon discovered that I was too clever to be there. So, I started an ordinary public school which was great, because I was learning so much more. But school was challenging for me because I got bullied for walking and talking differently.

“After finishing public school, I spent a year at folkehøgskole. This is where I found out for the first time that people could accept me for who I am.

“This led to my path of education.

“First, it was Videregående [secondary school] at a boarding school in Telemark.

“Then, it was a gardening school in Vestfold where I said nothing beforehand about my disability and gave them quite a shock. That was one of the best years of my life. I got my driving license that year.

“After this, I studied botany, ecology and recourse geography in Tromsø for a couple of years, and then in Oslo where I got my bachelor’s degree.”

On working in Norway

“For me, it turned out to be difficult finding a job. Nonetheless, I have worked.

“I spent a little over two years with the youth section of the Norwegian Disability Organization in Oslo.

“For four months, I worked at the NAV [the Norwegian Labour and Welfare Administration] office in Oslo.

“Over the course of six months, I was at Planteforsk – The Norwegian Crop Research Institute at Klepp stasjon.

“I worked at the agricultural section of the Klepp Municipal Office for two years.

“For four years, I was a driver for Klepp child services.”

On public health and infrastructure

“I don’t use public transport often because I drive. But when I do take a bus, I find the steps too high, so I rarely do it.

“Walking with crutches can make it difficult to open doors at restaurants and other venues but I find that people are kind and hold doors for me. Still, it would be helpful if there were automatic doors at more restaurants and venues.

“As a disabled person, the winter months are no doubt the most challenging part about living in Norway.

“Slippery roads and pavements are no good for me. Luckily, I live in an area with almost no snow. But the cold and moist weather gives my muscles pain.

“Other than that, I have no issues getting out and about.

“The medical care in general is good in Norway.

“But, there is too little knowledge about adults with cerebral palsy. The impact spasms can have on the body can be tremendous. For my own part, my spasms led to fractures in the neck, scoliosis, hip replacement, which has been making my mobility worse than before. I could walk independently and now I need crutches.

“The best treatment I have had is at Haukeland Hospital in Bergen.

“The cost of physiotherapy and home-help / practical assistance is too high. I wish the government would give free physiotherapy like before for people with permanent conditions. A fixed price on council home help services regardless of income and better quality on that service is what I would like.

“I live on a disability pension and manage on my own with all the practical things. This is because I find the quality of public help is not worth the cost. I know people who prefer private help because of this.

“If I need help my daughter is kind to come over. Friends are also happy to help out sometimes. Helping each other is always mutual.

“The pandemic has affected my day-to-day life. I wish to be able to freely meet up with friends, to have a meal, or see a film, or drive visiting a friend in another part of the country.

“The fun of going out has gone because of social distancing and the registration wherever we go.

“I have friends in the risk group and of course I respect that people want to restrict how many they mingle with. But this makes it so hard living alone.

“Thank God for my 3 cats, always happy to see me! :)”

Marit with cat
Marit visiting a friend in Holmestrand who takes care of homeless cats. The cat she’s holding is one of his oldest. Photo: Marit Koma Egseth

On facing discrimination

“I have faced discrimination. Mostly when out in pubs etc., where I have been refused to come in.

“Also, when looking for work.

“My CP-affected voice was a problem. I never got a regular job because I was told I could not show my face in customer service or take phone calls.

“The fact that my work guide at NAV said something like that made me quit any attempt to have a regular job.

“I have also been refused on a bus.

“At least I don’t have a boring life!”

Marit’s epic road trips

“I love driving because of the freedom it gives.

“My latest solo trip lasted two weeks. My road trips started long ago when my friend in Steinkjer wanted me to come every summer.

“Last year was the first time I did the trip alone in many years. The reason is a combination of having a boyfriend in England for seven years and going through five major surgeries in five years. I had to train myself to be independent again every time.

“Last year, my walking had improved a lot, so I felt confident to do the trip. And it was only natural to do it again this year!

“I hope to do it next year too or to do a trip to Lofoten with a friend.”

“My annual trip around Norway”

On the road, Marit is a modern-day Norwegian Jack Kerouac. She was kind enough to give our readers a peek into her personal travel diaries.

There’s nothing unusual about traveling alone around Norway, but what many people find exceptional is that as a disabled woman I drive around Norway alone.

For two years now I have carefully resumed my travels. Two years ago, I took a trip to Eastern Norway only. Just to see how it would go. I hadn’t had the stamina to do this up until then, due to all the surgeries I have had in the last six years. It led to the deterioration of my body. Neck and back surgeries have done irreversible damage to the nerves and muscles in my legs, but luckily, I can walk with forearm crutches. I walk slow, but I walk. And I can still drive!

Last year, I went on the long trip to Steinkjer in mid-Norway. Lots of other people were thinking the same thing because it’s beautiful along the fjord with high mountains and apple trees up the hills.

Marit by a lake outside Steinkjer. Photo: Marit Koma Egseth

I was slightly unlucky with the start of the trip as my tire hit a sharp stone and exploded. It happened on a narrow road in the Hardanger area. This happened on the first day of my trip and I felt like a bloody fool… Thought ‘Ouch, that was how my trip ended’. Well, I was able to move the car away from the road. Nobody came to see if I was ok, nor asked if I needed help. But I phoned the insurance emergency number and they gave me road assistance. They gave me a rental car so I could continue my trip. Had a lovely trip after all.

Spent the night at a hotel in the middle of Golsfjellet. High up on the mountain road. I’m just sorry I arrived so late due to my accident. The rest of my trip went well, and being with Sofie on their Swedish property, it was natural to drive through Sweden on my way south. I had a lovely stay at a small hotel, or rather a pension, in Härjedalen. When I ordered, I forgot about my problems with stairs, and even the landlady was worried. ‘Well if someone carries my luggage to the room, I would be fine’ I said… Even if I wasn’t quite sure how to cope with the steep stairs. It went well, and next time I go, I want more time through Sweden to know and see more of the north. I have been to many places in the south due to my late husband being half Swedish.

Later, it turned out the frame of my car was knocked out of shape, so they ditched my car and paid out insurance money for it. I was really panicking about asking, but thought ‘Eh, I need a car to be independent’. So I found another. From Ford to Hyundai, a smaller car but very stable on the road and with a good engine. The only bad thing about it is that I sit bad in it. The seat and neck support are completely wrong for me. So, I slightly worried about how it would be to use this car on my trip. But I had already decided to go, so off I went.

I was scared of taking the same route as last year because this year, even more cars would be on the road due to people prioritizing holidays in Norway due to corona. I took a long time disagreeing with myself which route to take, but then it sort of resolved itself. A few days before my trip started, I got a call from one of my friends in Bergen. A hunch made me ask her if she was free to see me. It turned out she was more than happy to have my company for a couple of days. Nora is a friend from my high school days when we both attended the same boarding school. When attending boarding school, we got to know each other really well so the connection is there even if years and months pass between our meetings.

The trip to Bergen is ok and goes really fast because I take two ferries. These give a nice relaxation and break up the trip in bulks. Bergen is a terrible city to drive through because there are a lot of lanes and the turn offs come quickly. I had made a deal to meet Nora at her local shop. She lives at Askøy, as far out to the end of the road as you can go. It’s beautiful where she lives. Her house is close to the seafront, so when we sit in her living room, we see the sea and mountains. The boats can’t pass without us seeing them.

It was very funny because I was on the island just as Nora was finished her work. Before I could even think ‘Maybe she will be right behind me’, I saw her in my mirror. I was giggling all the way to the shop and when we arrived at the same time there was even more giggling.

I spent two nights at Nora’s place. The weather was not too good, but we managed to go for a walk between the showers and sat at a bench at the end of the road trying to enjoy the view. The wind was too chilly, so we soon had to walk back. When I walk, I use a lot of energy, so I am warm as soon as I start my slightly wobbly unsteady stroll, but I don’t mind as long as I in fact manage to walk. My biggest problem is to keep my head up, due to the way they operated on me. It feels as awkward as it looks, but I can’t think about that. I have to focus on the strength I have within me. The time with Nora is always nice, because we can be ourselves together.

On day 3, I planned to reach Fagernes where I had a room ordered at a hotel. I followed E16 past Voss and decided to have a stop and meal at Flåm. I don’t usually stop at tourist places like this, but Flåm has something about it that I like. It’s a small community situated at the end of a fjord with tall mountains around it. It’s famous for the Flåm railway track where a small older train takes you up the Flåm valley to Myrdal through gorgeous landscapes.

I have never taken the train, but when I was a student in the 1990s, we drove a bit up the valley. People can bike or hike up too, or they can take a horse and carriage. The last one would be perfect for me giving me plenty of time to enjoy the scenery and take photos like I love. The newest tourist attraction is a zipline that takes you down the valley… That is if you don’t mind heights! In fact, it’s the world’s longest zipline.

I wisely stayed at the bottom of the valley strolling round in Flåm, exploring the tourist shops. After all, I was a tourist. And I was amazed over all the items one could get. I bought two Norway caps for my Gambian boyfriend Musa. Before driving further, I had a nice dinner eating the traditional Komle, which is potatoball, served with mashed swede, bacon, sausages, and salted lamb meat. Yummy food, but most people don’t like it if they didn’t grow up with it.

After enjoying my meal, I proceeded and decided to take an older mountain road. Ugh, a real challenge because not only was the road full of curves, it was also full of many-kilometers-long dark tunnels. When I say dark tunnels, I mean with no lights, so when a car appeared in the distance it was really hard to determine how far away it was. So, I was driving slowly and when I finally reached the top, it was absolutely worth it. The scenery was stunning. Bare mountains with patches of snow as far as I could see.

This evening, I checked into a hotel at Fagernes, a small mountain village in the area Valdres. The staff was so helpful. Carried my bag to my room and because I am on crutches, they gave me the first room in the hallway. There was not as many guests as normal, so I was practically alone in this big bar enjoying my beer watching the sun set behind the mountains. I enjoyed myself. Made a fool of myself when I was leaving… The crutch found its way outside the ramp and I fell. The man carrying my bag got shocked and rushed to my assistance. Thank god I had my small backpack on, so I landed on that. I drove off feeling so embarrassed.

The next day I was planning to reach my friend in Rennebu, south of Trondheim. I drove over the mountain region called Valdresflya. If anyone thinks I love mountain scenery, that is completely true 🙂 Valdresflya is a relatively flat area with easily accessible tops for those who love hiking.

Photo from Valdresflya
Valdresflya. Photo: Marit Koma Egseth

Because of the corona situation, there were more people than normal in this area. The traffic went so slow. Crossing over normally takes one hour; now it took an hour and a half because of so many cars and camping cars. It is so tiring when the traffic moves slow. So, I stopped at a café appearing to have few guests. What I didn’t think about was steps. Steps to the door, steps to the café itself, but I needed the toilet and had no choice. I wanted my coffee outside because fresh air is so nice after a long time in the car.

The rest of my journey went well with the exception of going down from Dovrefjell. For some stupid reason, they were doing road work in the middle of the day, and for one hour we were driving 20 km speeds and it got us nowhere. But when the road workers finally let the queue pass, the rest of that day’s trip went very smoothly. I reached my friend not too late, but I missed the turn since it was six or seven years since the last time I was there. About time. I found my way and she was so happy to see me and I her.

My friend Birgit wanted us to stay at her cottage up in the woods. It’s a lovely place with views of a lake with mountains in the background. The issue for me is that the path to the cottage was across a marsh. Another woman had indicated that no way I could walk across on crutches. But my friend knew I would manage with time, so I made her walk beside me and I did it with high concentration. Without falling on my bum. 🙂

Marit by a cottage
Marit after successfully crossing the marsh. Photo: Marit Koma Egseth

I had three nice days with Birgit before heading further north first to see my old friend Thea who lives just outside Trondheim and is newly married in her adult days. I am so happy for her. So, I wanted to meet her husband and see how she was doing. Thea and I went to Folkehøgskole together some 30 odd years ago and we spent a lot of time together when we both lived in Oslo. Thea was so happy to see me, and the feeling was mutual. We chatted as if we had seen each other yesterday and not years ago! I have many such friends from way back – when we meet it’s like yesterday. Such friendships are worth nourishing.

This trip was about meeting friends I hadn’t been able to see for a while due to my health. Five surgeries in five years is a lot on the body I can tell you that much. So now it’s so nice to finally have my energy back and have the social life I like.

After Trondheim, I took off to my final destination; Ongdalen outside Steinkjer. My friend Sofie lives and runs a farm together with her husband and son in lovely surroundings here. Hills with forests as long as the eye can see. The moose thrive here and along the road to the farm, I saw four of them grazing on a field. The area is a typical hunting area because there are lots of moose. The meat from these animals is the tastiest I have had besides lamb.

Farm outside Steinkjer
The farm outside Steinkjer. Photo: Marit Koma Egseth

Sofie and I had a nice week together. She is quite busy with the farm but in between, we had lots of nice chats. They are breeding dogs, one of them had just been mated, and they are now expecting puppies any day 🙂 They have 3 types of dogs. Setters, Dachs, and Norwegian moose dog.

Marit with a dog
 Marit on a different day, in a local park with her daughter and her Pomeranian named Pippin. Photo: Marit Koma Egseth

We were able to go for small trips in the area. The weather was nice and warm, so I tried to go for a walk every day. From the house to the main road there is maybe 300 meters which for me is enough. We went to a lake not far from where they live. A beautiful large lake surrounded by woods and round-shaped hills. So peaceful to sit there with our coffee. I love taking photos, so I always find motives everywhere. The sunsets in this area are just gorgeous.

A trip to the town, a birthday celebration were among the events of the week. Whenever I am there, my task is to make dinner and to always keep them with warm coffee. We wanted to go to their property in Sweden, but the corona situation didn’t allow us. They have a lovely property just across the border, and we were anxiously monitoring the updates on travel restrictions, but none for our benefit this time round.

My love for taking photos can sometimes give me challenges. I have to put the crutches in front of me supporting them with my stomach if the motive doesn’t allow me to put them somewhere. Imagine this. The evening light was really nice, so I took a walk up to the main road. One of the horses was out and they are a motive I love.

I was planting the crutches in front of me, then one of them fell down due to slight wind coming… The horse got startled, which got me startled, and the other crutch also fell down. In the evening, my muscles always are tired, so I knew I wasn’t going to be able to pick them up, but I tried. And the muscles failed me in the attempt. So, I sank down on my knees and had to call Sofie for help. I was so embarrassed… And the horse well he continued his evening meal and couldn’t care less about anything else 🙂

After a lovely relaxing week, it was time to head home. It was done in four days because I was visiting so many old friends. I promised Thea in Trondheim to drop in again since we don’t see each other that often. This time, I managed to get a better impression of her husband. He seems to either not understand what I am saying or he’s just shy or both, but the main thing is they seem so good together. She deserves a good man because she always did wish for a family life.

That afternoon, I was driving towards Folldal to spend the evening and night with my friend there. Margunn is a woman who runs to a mountain top every occasion she can, and I have been reluctant to reach out to her. When I mentioned this, she laughed and said she can relate to me even if I can’t climb a mountain. And it’s true, she is one of these who I always talk very well with, and it’s like yesterday when we meet.

Folldal in eastern Norway
Folldal in eastern Norway. Photo: Marit Koma Egseth

On my way to Oslo, I stopped at a small place named Hakadal to meet a friend there. The meeting point was in the middle of a sharp curve. I missed it and had to turn back. My friend Elise laughed.

I reached Oslo not too late and was having a nice evening with Kari there who is one of the most good-hearted women I know. Her mission in life is to support organizations or private persons who are rescuing cats. So, since I was going to see Daniel in Holmestrand who does a lot for homeless cats in his area, she put three bags of cat food in my car for him.

Kari and I had a nice evening. I was lucky to borrow the guest apartment in her building for only NOK 300. Lovely. Slept well and could use my own time in the morning without stress. I went to the Oslo city center because I was searching for an English shop that I could not find. I ended up going to my old tea shop for my favorite tea: a type of green tea with lots of citrus fruits in it making a lovely flavor 🙂

My next stop was a cat friend in Holmestrand who welcomed me with open arms. He is a man who takes in cats from the street that initially would not survive, but in his care, they heal and get a good cat life. He and I talked till late night. My idea was to reach home that night, but after driving for one hour I decided that would be too much. So, I called my good friend in Arendal to hear if her guest room was available. It was available, and then Olivia and I also got a nice evening together. We talked about getting together in her cottage in Telemark later but decided to monitor the corona situation.

The next morning, I arrived home. My three cats were only too happy to have me back. The cat sitter had taken good care of them for two weeks, but it’s obvious that I am the best human in their lives :)”

Note: Names in this section have been changed from the original.

To the readers

“It’s so nice to make readers more aware of the challenges disabled may meet.

“But, beyond that, I am an ordinary and non-ordinary woman who simply wants to live the life I can – to the fullest.”

Marit on a bench
Marit last year in northern Sweden, where her friends in Steinkjer have a property. Photo: Marit Koma Egseth

Source: Norway Today

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2 Comments on "“I was told I could not, but I did”: Marit Koma Egseth and living in Norway with a disability"

  1. A most inspiring story and an enjoyment to read

    Phil

  2. wonderful story by a couragous woman

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