esperienze

My name is Lise-Lotte Bundgaard I am from Denmark. I am 38 years old and living in Aarhus with my fiancée, in our own apartment. I work partly as a receptionist and partly with some fundraising for the members of the Danish MDA three days a week. I suffer from Limb-Girdle Muscle dystrophy, which was discovered when I was 9 years old.

When I was about 20 years old I began using an electric wheelchair, and when I was 26 I began using a respirator, which came as a big surprise. For a long time I didn’t feel well. But it didn’t occur to me, that my problem was related to my respiration. I hadn’t in my wildest imagination, thought that I would ever need a respirator. My oxygen percentage was only sixty - usually the percentage should be in-between of ninety and hundred - no wonder I didn’t feel well.

Luckily I was tracheostomized, and now a hard time began, trying to use the respirator only when I slept. For a year I used the respirator, only at night, and when I started using the respirator 24 hours, it was quite a relief. I think I was more dependent when I only used the respirator when I slept. I used a lot of energy when I was out, thinking of when I could go home to my respirator, I got so tired. I do manage to breathe by myself, though I am not very good at it, but it makes me feel a kind of secure.

It makes me feel secure in the way, that even if the respirator should break down, I can breathe myself, for some time, I will survive. I think of, it in the way, that it can’t be that bad, if I can breathe myself.

When I started using a respirator I obviously feared that almost everything could go wrong. Until I realised that I was alive, and I had to do something to make myself a life worth living. Before I got a respirator, I already had people employed, so that part of being a respirator user wasn’t new to me. As time went by, I learned to live my life depending on the respirator and people to take care of me, as a respirator user. For a while I was very careful going out, but very soon I found out, that I could almost live life just as I had been used to. I have always been very curious, and with support from family and friends and of course the helpers, I started to do things little by little.

Living with my fiancée and working as a volunteer, I do in many ways live a quite ordinary life, just like other persons who is not disabled. And I very seldom think of myself as sick, I even sometimes forget that I am a respirator user. It has become an integrated part of my life.

In Denmark you have a unique possibility, being a respirator user, living in your own apartment, with helpers whom are employed by one. You get a chance to arrange your life, in any way you prefer.

In Denmark we try to make people with disabilities as independent as possible, in terms of trying to compensate for the difficulties, implied by the disability. If you want to achieve an extent of independence, I believe it is necessary to live in your own apartment, have helpers employed whom you have yourself chosen, to have your own car adapted to ones needs. To be able to get these things, you have to get a pension from the state, and the state has to pay the wages for the helpers. It is not in the way that I am wealthy, but I manage to cope. The pension in Denmark is at the same level as the salary of an unskilled worker. All these things make me able to live an active and challenging life, just as I want.

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