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Meet Vanja and Øyvind

Vanja

Vanja was a happy girl from Trondheim where she lived with her parents. She attended upper secondary school and enjoyed photography, films and computers.
She had some good friends and many interests. Vanja loved travelling to the family’s cabin in Trøndelag and to other places around the world. Her family and best friend were the most important people in Vanje’s life. With so many good helpers and a lot of determination almost everything was possible even though she needed someone alert and awake by her side 24/7.

Vanja suffered with a chronic respiratory infection and her lungs were stiff, as a result she was prone to infections. Despite this, the disease was kept under control for the last ten years with 14 days of chemical treatment at a hospital every three months. Sadly for all involved, her life came to an end in October 2014.
    
Vanja had many life desires and dreams, and luckily she got to experience many of them. Her family feel that it’s important that others in a similar situation benefit from the messages in the video interviews we made in Trondheim in April 2014. They’re about maintaining a sense of humour, togetherness, well-being, respect for one’s convictions and heaps of love!

Now you’re going to meet Vanja just before her 18th birthday.

Meet Vanja – 17 years of age – text version

My name is Vanja, I live in Trondheim, and I’m 17 years old. I like to play with my computer, and I do that every day. And I watch TV, films, TV-series, and listen to music.

The thing with illness, being next of kin, that life, it started when she was 10 months. And then she died on the way to the ICU, but fortunately she didn’t have any diagnose so she was brought back to life because she was healthy. Then we were sent back home, and were home just for a little while and then with a total crash, and with a respirator it was then that they started talking about tracheostomy and I thought that was a hard choice. Then she started elementary school when she was 6, she had then started with the respirator at daytime, both day and night. She didn’t use oxygen yet, but she had a nurse with her at school and had normal days, and there she met her two best friends, Janne and Lone.

We started in the same class, we were, well Vanja was 6 and I was 5. I can’t remember that much but I remember, that Vanja was kind of the one that, that there was much focus on Vanja in Year One and that I was very curious about who she was. In fact, now we’ve become so good friends that it’s almost like being sisters. And our interests, I don’t really know what we have in common. Vanja has a lot of technical skills with computers and pictures and stuff, that I don’t have at all, but we learn things from each other and we go to the cinema a lot, and we often go to cafes and to town and things like that. Vanja has travelled a lot and I have been on many trips because of Vanja. Copenhagen, Stockholm, Berlin, Amsterdam.

We have a caravan that we travel with in the summer. Then we put all the equipment in the caravan, and the employees have their holiday, and then we drive around with it and see different things, just follow the sun.

Now she goes to “Katta”, the Cathedral school on the other side of Nidaros Cathedral. It isn’t far away, and they were very sceptical of having her start there. After all, it’s the oldest school in Trondheim, and they had never had any students using a wheelchair, so I said that it was about time that they had one. And as the teachers say, they are very lucky to have had the chance to get to know Vanja. She shows life from the other side of the coin, and is industrious and hard working and gets on with the work, she wants it done.

I was going to substitute for a few days at the school for someone who was going on holiday, and since then I’ve been coming to school. Bodyguard yes, I follow Vanja and prepare the PC and the books, move her, and take care of suction and bagging and all that. In other words, make sure that she can participate as far as possible. The school day is different every day.

I have photographed Janne with some balloons. First I take the photos, then I edit them in Photoshop, and then I give them to the teacher. You have journalism as a subject, and you have worked with sound. It’s quite varied, lots to do.

They work in sections ending up in a project where they can demonstrate what they know. I like a lot of the things I’m working on, so I’m very happy here and could never have chosen a different curriculum. I think that children who go to school or kindergarten with Vanja, have learnt things that many have missed out on.

I remember the first time I met Vanja, I was sitting in the classroom and suddenly I heard a Darth Vader kind of thing that came in, and when I turned around Vanja was sitting there. We have wheelchairs in the classroom, so then I sit on one and hold on to Vanja’s wheelchair, and then I don’t let go so that I become like a trailer. I think everybody is fond of Vanja, even if she can be a bit of a bully sometimes i think most people tolerate it in a way,
and it’s also a little funny for those who are not being bullied by Vanja.

When we hire people the chemistry is important, and humour, and joy. Yes, humour and joy, they can’t be self-centred and self-centred and introverted, that’s not the right person for you.

It’s almost like, as mum says, you must have a sense of humour and not the least good chemistry. We are going to be together for many hours of the day.

So training is pretty tiring. At least for me, I spend a lot of energy on that. Every time I want to say something, and especially then..

I started as Vanja’s assistant 15 years ago, when Vanja was 3 years old. My job is mainly to make sure that Vanja is OK. In every way, not just the medical part, but also that she’s having a nice day. That she’s doing something that she likes.

Vanja is a very chatty girl, a very social and positive girl. She spreads happiness around and it’s very contagious. The most important thing for me, to feel confident at work, is time. To get to know Vanja in a calm way. To have people around that you can ask if you have any questions. Not to be put in situations you feel that you can’t handle. To have the chance to get some education myself, when I feel ready. Now I think it’s OK when the others leave the room and I’m alone in the situation.

There are assistants here all the time, 24 hours a day. The most important thing is that we become friends, we need to be comfortable with each other, and it needs to be a relaxed relationship so that we can be here and feel secure with each other. Above all that Vanja and I can be friends and talk about the things we care about and that it becomes natural to have a third person with us, without it becoming so that there are things we can’t talk about, it must be relaxed.

First of all, when you have a job like this you must be able to adapt to people and you must know how to read people. You need to have a connection with the user and be a little on the same level. We are with her day and night, if one person is on duty the other one needs to be present. We are alone with her each of us, but otherwise they are two. One welfare nurse and one nurse. But I think that working with Vanja is the best job in the world.

What are you going to do when you turn 18?

Then I’m going to buy a dog.

But I don’t want a dog.

No, but it’s going to happen anyway.

But there will be some changes when you turn 18, things that you need to think a little more about, you can vote in elections. It’s kind of like you need to think grown-up thought. So, which party are you a member of?

AUF.

Yes, AUF

Are you going to live by yourself when you turn 18?

Not straight away.

Are you going to live with mum?

Yes.

It will be nice to decide for myself, but I think it will be good and I can’t wait.

Then I rinse it with salt water, we don’t use any gel or anaesthetic cream because it’s so fine, but many people use gel and things but we only use salt water to make it slide down on it. This one must then be bent to the side, you can’t pull it out. Earlier you could just pull it straight out but now you have to do like this. You count to three, and then you pull it out yourself.

“Is this enough?”

“Like this, did it go in?”

“No.”

“Now, it’s enough.”

I have been very clear about the organisation at home, it has to be like I would have wanted to work in someones home. So we are very separated, but still close. Vanja has her room on the ground floor and a separate toilet for employees and her own bathroom downstairs, and then we have an equipment room. We have also reconstructed the house so that we have bedroom, bathroom, living room and kitchen upstairs. And then there’s the lift in between, so that when Vanja has company they are downstairs.

Vanja likes to be in her room and thinks that it’s very nice to be there. Oliver’s room is just next door and he must go to bed because he has school
in the morning, but Vanja likes to stay up a little later, so she makes a bit of noise. Laughs and fools about.

When I’m trying to sleep I can hear that she and the guard are talking. They talk pretty loud, and if they bang the wall or something, then it’s annoying.

We usually cuddle a little and we give many hugs. And sometimes I blow her on the cheek, she doesn’t like it but for me it’s fun. So I tease her a little.

We’ve been walking in the park a few times. I remember that we had a small car, a mini called Knerten, that she used to drive. One time I took it, and she took the wheelchair, and then we went for a drive. It’s quite nice, but of course I miss someone to play football with. But anyways I manage because we throw the ball to each other sometimes. And then I kick the ball at the wheelchair so it bounces back, it’s not like real football but, but i don’t think I could have had another sister than her so I’m very happy with what I have.

We have always gone to the same school, in the same class from the first to the tenth year. And when we started high school Vanja had other interests than me, and we started to go to different schools. Then we decided that to keep in touch we needed to have one fixed day that we saw each other every week. And we all love tacos here so we have taco Tuesday every single week and we’ve been doing this since we started high school,
meeting up on Tuesdays, eating tacos and spending time together that day.

It is so nice to see the youth together we like that there’s a little activity in the house. I can see that Vanja has become a person that enjoys life, like I though she would. I wanted to give her a good life, and I feel like we’ve succeeded at that. To give her the chance to be the person she is despite what people think she is, to put it like that.

Øyvind

Øyvind lives with his brother in a house in Narvik. Both brothers have home mechanical ventilation and require assistance with practical tasks. They have arranged it in a way that a team of assistants gives them around the clock care, so in that respect they live very well. They have a home cinema, a home that has been practically furnished with even a pinball game. They have a system for training their assistants and Øyvind likes to make his own decisions to the extent possible. He wants to take responsibility for himself and his health. The assistants are actually living ‘assistive devices’  – his arms and legs that no long function the way they should.

You are now going to meet 44-year-old Øyvind, who needs respiratory support and other assistance.

A better life with mechanical ventilation – Meet Øyvind (44 years of age) – text version

My name is Øyvind Hansen and I’ve used a respirator since 1998. I also have an older brother who has used a respirator since 1994. So, I have a brother who has experienced all the difficulties of not being able to breathe so I knew what was coming. So in a way I avoided that period with headaches, memory loss and the things that he experienced that the tongue slides to the back of your moth at night and the feeling of choking.

The earlier you start the better for your body so you should maybe start before you have all the symptoms. I already knew when to start because my brother had experienced it and really, I got the respirator a little bit too late. So I kind of had an advantage.

We need help with most things because our muscles are so weak now that even if we can control a PC with our arms we need help with most other things.

I studied to become a graphic designer here in town. So, I have both the technology, and my interest for technology and technical things from my older brothers and it was natural for me to start using the computer during my education. At the time there weren’t that many teachers who knew anything about computers so I’ve learnt most of it by myself, and it has come natural for me.

I’m interested in computers, films, TV-series and technology. I love technology and gadgets and whatsit, and for me the respirator is just a part of my life. It just helps me to breathe, it’s just a mechanical assistant.