Keeping the future at a distance

The interview with Monika below was written in 2013 and just a snapshot. I have no idea how she is doing now.  
Monika has had MS for five years. During the first years, her physical condition was well, so she was able to ignore it. After some two years her health detoriated, but now it is stable again thanks to a treatment with medicines. Not many people know about her illness and as long as it is possible she likes to keep it this way, because she 'doesn't like to be treated more differently than she is'.
Afbeelding invoegen 
                                                                                    At her own request no picture of Monika

The first symptom of the disease showed itself when Monika got seeing problems with her left eye. She was able to see, but not well. 'It lasted only two weeks, so I didn't worry about other things and after the eye problem was gone I picked up my normal active life and ignored the illness.'

But, things got worse over the next years. She fell continuously and had a bad feeling in the fingers of her right hand. Although her condition is still not totally stable nowadays she has been able to live an almost normal life for two years. Monika has been working in a new job since a couple of months and goes out like any young Lithuanian, except she gets tired sooner and  is not capable to have great physical efforts. Her mother has the same disease, but MS isn't inheritable. Monika herself thinks the incident at the nuclear power station in Ignalina in 1986 could be the cause of the MS. She was born two months after the incident. 

No need to talk about disease

Monika is reluctant to tell the outside world much about her disease. Because one doesn't really see it at the moment, she thinks it's better that only people who are close to her know about it. Otherwise, it could lead to misunderstandings. She also doesn't feel the need to talk to other people with MS. 'My mother does go to meetings which are held a couple of times a year. Personally, I don't see why it can be useful for me to visit them and hear other people problems, because whatever is wrong to them may happen to me as well. I know my own situation will get worse over the years and don't want to think about the future yet.'

So, in fact you are avoiding your illness. Do you never think about how life will be when your body doesn't function well anymore again and you will need amenities? 

'No. I still find it sometimes hard to accept the fact I have MS. That there are certain things I can't do like sports. I can be angry because of that, but I do not see why I have to talk about it. I know what it is like when my body doesn't function. I have experienced that. It's easier for me not to talk about it much. I only want to know how things are now and at the moment I feel like the way I want to. In fact, I'm talking more about my disease to you right now than I've done to other people I don't know well.'

Then, why did you approach me to tell your story?

'I want to share something, because I'm feeling well at the moment. At the time things went bad, I talked less.'

Vilnius not a bad place for disabled people

The treatment of MS is an expensive one. Every three months, Monika has to go to the hospital for control and getting a new supply of medicines. The Lithuanian government pays for these costs. There are other good things about living in Vilnius with MS as well. 'Vilnius is neither the best place nor the worse. I know where I can sit and rest when I'm tired. Some busses have been adjusted to disabled people and the drivers will help them. As far as I can tell they're not used very much by people with a disability. Old houses which are not adjusted are a problem and not all public transport has been adjusted yet, which will have to do with the costs of it.'

Live life every moment

There's no cure for MS until now. All the medicines that are being registered and used in Europe are available in Lithuania as well. Monika knows of a big European research for new treatments, but it will take some years before its results will be known. The problem with MS is that different parts of the body can be effected and one can't predict which parts exactly in advance. Therefore she refuses to look ahead. 'Future to me is next week, next month. I'm not thinking in years. In my current situation, I am never sure about my health and as long as I am still able to do everything what I have planned, I will do it. That’s why I do not plan for more years. First, I didn't want a boyfriend because of my illness. That way of thinking has changed. At the moment, I'm very active at work. We often do things together outside the working space. I also visit seminars, for instance about photography. Taking pictures is an interest I've inherited from my father. He has been taking pictures of me since I was a little baby. I strive for perfection, but am not perfect myself. I'm also impatient. I don't want to miss anything. I live my life every moment of it and if I have doubts about doing something yes or no, I try to do it.'

Is it always necessary to put ones disability at the first place? When one is being confronted with it every day, one tends to do that. Monika proves it doesn't have to be that way. I've tried to get more clearness about her emotional thoughts with regard to her illness and her look at the future. She just avoids to let her life be controlled by MS too much. She lives in the here and now and what the future will bring ...

Monika likes different kinds of music. English and Spanish. A Spanish video clip that always makes her smile is
"No Me Digas Que No” by Enrique Iglesias ft Wisin, Yandel.   
Copyright text: Johan Peters, May 30th 2013 - ...