If you want to get this kind of arrangement you will have to fulfil different kinds of conditions, for example you have to live an active life and you must be able to deal with a lots of obligations being an employer. You will have to make sure that the ones you employ get their salaries in right time, you must be able to organize the work you want to be done, make sure that your employees get some pauses through the day etc. The persons whom I employ are typically young persons who are studying Italian, theology, ethnic etc. To me it is of great importance they have a great sense of humour, that they have an overview, that we have a good chemistry. To me my helper is not only care assistants they also by time become friends in the way that they most of all still are my employees.
If you can fulfil these obligations you get your "freedom" to choose which kind of life you want to live. I can't think of any other way to live my life. In this way I am the one who is in charge of my life. Some may think that I get depended on my helpers, but I would be just as dependent if I didn't have my helpers, in my situation I would never be able to manage myself. No matter how I look at it I will always be depended on others. I believe that the way I am having people employed, I am the one who sovereign is in charge of my life.
I do in many ways seek challenges, for me it is important to cross personal borders. I am a member of the board in a culture association, where we do some theatre, which is very exiting. I very much like to do some acting, to have the possibility to be someone else, the challenge it is to perform in front of an audience.
In Muskelsvindfonden (the Danish MDA) we every year have what we call "Grøn Koncert" which are concerts, where four or five bands play there music and the profit goes to members of the Danish MDA, in that connection I performed for an audience of approximately 50.000, fifteen thousand. It was quite cross bordering and fortifying for my self-esteem. In 1994 I went to Tuscany with two helpers and a good friend. I had rented a house and went there by car. I was at that time a little worried about the whole thing, but I had a wonderful holiday. It is of course a little difficult, being other places instead of with my own home where I have all my aid and appliances, but it can be done, the first times are obviously very demanding, but even travelling, packing all your stuff can be a habit, one of the good ones.
Having this experience, I knew that almost everything could be done; it was a kind of a proof, that it actually wasn't the respirator, which prevented me from traveling. To do things like going to Tuscany by car, of course requires a great deal of preparation. How to get there, where to live, how to get around, what do you need to bring with you and a lot of other practical necessities.
I myself prefer to travel by car, because of the freedom it gives. I can go where I want, anytime I want. I think it is easier than using public transportation. When I go abroad or just inside Denmark, I have to make a list of things, I need to bring with me. It gives me a kind of security to know, that I have remembered all my things. And believe me there are a lot of small things, to the respirator, which easily can be forgotten.
In the past years I haven't been abroad, but very often I have travelled in Denmark, for the fact that I have been a member of the Danish MDA board of representatives and the meetings were arranged at the other end of the country and usually for two days. I also work as a volunteer, in courses held for members of the organisation, where I look after children so their parents without disturbance, can attend the courses.
Almost any practical thing can be done; almost every problem can be solved. In terms of the bottom line I believe, it is more a matter of feeling safe, having the courage, and being curious. These three things make you capable to do almost anything.
October 2002
