With long-term mechanical ventilation one can participate in society in the same way as others. Learn about Vanja and Jorgen’s experiences.
Vanja on participating in society
About Vanja and adaptation in her family
Jørgen’s experience with being employed
Participating in society
I do not currently have a regular job nor do I study, etc. However, from 2007 until 2010 I was employed by one of Norway’s largest broadband providers, as a customer service representative. I also found that using a breathing machine at work was different to when I did not use one. You can read about my experiences and thoughts on using/not using a breathing machine at work.
For most people, the word ‘job’ primarily means doing something that is necessary in order to provide for their families and themselves. Going to work is a necessary obligation; a way to obtain financial security. This has never applied to me. Since the age of 18, I have received the full disability allowance. Therefore, I have never had to fight for financial security. I have never had to depend on myself in daily life. Nonetheless, I still believe that having a job, even if not necessary, is a good way to become included in society. It was also valuable in other ways.
Always liked IT
It has always been natural for me to use a computer in many situations. Even though there are probably millions of possibilities that I have not yet tried, I always imagined working within IT.
I trained to be a network administrator at a vocational college from 2003 to 2006. This led to my first job in 2007. I enrolled on a job-training course through the Norwegian Labour and Welfare Administration (NAV). Whilst on the course, I had one month’s work experience using different types of computer networks. It turned out that my adviser knew someone who was a manager at the company concerned. He arranged a job interview. Three representatives of the company were present and I don’t think I have ever been so nervous as I was when I entered the company’s premises. I should probably have been more prepared for three people analysing me, but I wasn’t.
It all ended with a full-time position, which was eventually reduced to three days a week from 10am-2pm. My duties consisted of being connected to a computer with a headset on my head. Customers telephoned me for technical support for their broadband connection.
Better work with a ventilator
My assistant who accompanied me sat and wrote on the keyboard whilst I dictated reports. Consequently, I had to take a lot of breaths, especially as the words had to be clear and precise. I didn’t use a breathing machine for the first 18 months. As a result, I was frequently absent from work due to respiratory infections and my absence due to sickness was above the norm. In addition, it was difficult to hold long conversations over the telephone without my voice becoming low-toned with confusing speech.
When I finally arranged for a breathing machine on my wheelchair, it wasn’t very long before my workday improved. The lack of concentration and focus I previously endured was quickly transformed to the opposite. It was suddenly much easier to see the context in my work and my problem solving skills were boosted. I struggled to hold a conversation for more than ten minutes before, but afterwards it felt like I had added strength to do my job. My day, after work, also improved. My absence due to sickness significantly dropped to practically nothing. I think management was more satisfied with me after I made the change.
Not always equally motivated...
I will gladly admit that there were mornings when I did not want to get out of bed, when sleep seemed more of a privilege than sitting talking to a dissatisfied and angry customer. After three days at work, I was often exhausted both mentally and physically. It takes a lot more to get up early, and stay focused and concentrate hour after hour, than it does to get up around 11am/12pm, watch some TV and then surf on the Internet. It’s much more demanding.
Nonetheless, that type of life definitely had its advantages despite the stress. I greatly appreciated contributing to society and having a role to play. Prior to starting work, I had nothing to do for a year. When people asked me, “What are you doing nowadays, Jørgen?” I felt that I didn’t have much to tell them. However, when I was employed I was proud to say, “I’m a customer service representative for a broadband provider.” Often the response was, “You’re working?” That’s great! Although, you don’t need to work, but it’s good that you do anyway.” It boosted my confidence to feel that I was part of something bigger and more important than staying at home relaxing everyday. I particularly remember driving home from work. I’m the type of person who finds it boring to be serious for several hours at a time. It was only a 20-minute journey, but I used to send my assistant crazy with all the silly things I said about absolutely anything that came into my head. It was quite the opposite of a typical conversation with a customer. Such moments made my workday worthwhile. In the evenings I could enjoy a film and TV without feeling guilty that I should be doing something more constructive, as I did something constructive during the day.