‘The thing that counts in the end is what you make of your own life’
Kim Straver is 34 and lives in Doetinchem (in the east of The Netherlands, near the German border). Since she was born, shes been coping with a deformity of her hips and back. This makes she experiences a lot of pain when she practices too many physical efforts. Her disability also makes she must lay down for the greater part of the day and is not able to sit up straight. But, Kim is not the person to be easily daunted. Below follows her story.
Kim did have a quite normal youth despite her disability. She went to a normal school and practiced several regular jobs until she had to stop working in 2004 because of her physical situation. While I was working in the health care, I managed to get some certificates for the study clinical psychology by studying in the evening. At one moment, I had to stop working in the health care and decided to switch to the job of office manager for which I followed an education as well and I got a job with a publishing company. In 2007, I also studied the Arabic language at home. The moment I had to stop working, I did miss it a lot in the beginning. The satisfaction, the fun, everything. With some colleagues I still do have contact. Fortunately, that hasnt changed. I dont miss the rhythm of being at work. I still have it, only at a much slower pace than I used to do. Ive been in a relationship since 1988, but I live alone with my three cats.
I have had my disability since my birth, but it has gotten worse over the years. Every time I noticed a deterioration, I became against the grain. In 2005, I didnt recover from an operation I had had in 2004. As a reaction I didnt take notice of my physical barriers on purpose anymore. I wasnt able to sit normally, because my hips and back obstructed each other. My wheelchair was adjusted in such a way it became my sitting chair. This way, I was able to sit up straight for one hour the maximum. A longer time wasnt possible and made me feel terrible because of the pain. But, I refused to give up. Ive got an "adrenalin button which I "put on as soon as the pain got too worse. Such a button is practical, but I went beyond all my physical barriers unconsciously. In my brains, I can do everything. Unfortunately, my body often says no. It took me a lot of blood, sweat and tears before I realized I was pushing myself into the abyss.
In 2008, I didnt recover anymore after an activity. I know how long it takes to recover. This time, I didnt succeed in building it up anymore. After three months, I still was only able to sit up straight for two times five minutes a day. I went to the physical rehabilitation doctor. He sent me to a rehabilitation course immediately. Slowly, my eyes opened. It had not been an individual action which caused my situation, but all those years of going beyond my barriers. From then, a lounge-chair entered my life and I consciously tried to find a balance in my life and to maintain it. In 2009, I was that far to live in the moment itself. I did let go, which gave me inner peace.
Disability part of identity
My disability is a part of me. At home, it wasnt really a subject. Not as far as my parents and sister were concerned and I didnt make a big issue of it myself either. During my childhood, it didnt cause that many problems. I experienced pain, but only told my mother about it. I had to go to the hospital for medical examinations. I never talked of those to my friends. In my opinion, they were not that important.
Nowadays, I live independently and do have guidance and personal care. Im free to choose the people I want at the moments I wish for. This freedom feels good to me and I find it only normal. There are also relatives standing by to take care of me, should it be necessary, so I dont complain about the amount of help. I will always fight very hard to be able to live independently. Fortunately, people around me have the same opinion. I understand savings in the health care are necessary. But, when I look at the amount of money available for my own care thats already shrinking I wonder where this will lead to On the other hand: with each new elections, political parties present new plans for financing health care. It will always remain a difficult subject.
The thing that characterizes my disability the most to me is the fact that the pain influences how I spend my days. After each activity, my pain gets worse. Think of things as getting up, taking a shower, making a cup of tea, go visiting someone etc. I pay a price for each activity. I can only recover when Im lying on the bed. The art is thus to find some balance. I have to sit up straight twice a day. This varies from five till 30 minutes. When Ive been on a visit during the evening and thus have exceeded my barriers a lot, it again takes some few days to build things up from those five minutes. Most of the day I lay on the bed (21/22 hours on the average). To sit is difficult and only possible in an adjusted wheelchair. I cant sit in normal chairs or on normal sofas. Thats totally impossible. To make my situation clear to people, I sometimes tell them that my disability is a full time job including working overtime and work in the weekends, without any holiday! Because of the fact many ordinary things are not common to me, I enjoy small pleasurable things and trips intensely!
The Netherlands have extended provisions and legislation with regard to people with a disability. Recently, it also adopted a law which says the UN-convention concerning the rights of disabled people must be applied in the whole country. Which obstacles does Kim nevertheless experience being a person with a disability? Personally, Im thankful for being Dutch. One does have the right to receive a benefit and good medical care which isnt always the case in other countries. Thats what I hear from people I know in other countries. I did notice much myself too while travelling at the time I was still able to.
As far as accessibility is concerned, my experiences are diverse. Many staircases or toilets are not adjusted to disabled people. Either theres no toilet for wheelchair users at all or it is being used to put stuff in. Pavements are often hard to get on or off by wheelchair. Furthermore, it would be practical to have one single policy as far as parking spaces for the disabled is concerned. One community lets you pay for it, another doesnt. In Doetinchem you dont have to pay when you park, but you have to pay for your ticket that allows you to park on such a parking space. Its all rather confusing.
Sometimes, I go to a concert or the theatre. I do have "bad luck using a lounge-chair that takes more space than a normal wheelchair. This makes I hardly see anything in some theatres. When I want to go somewhere, I first have to find out whether it is possible to get there. In general, everyone tries to help. Because they cant imagine how it is to be in a lying position, it sometimes happens the sight is still a big problem. One learns of such experiences and nowadays I can perfectly tell which places I can go to and which not.
Lust for life despite physical uncertainty
Its not easy to plan ones future in case the physical disability gets worse in time. How does Kim cope with this knowledge? I keep on enjoying life, no matter what happens. I certainly have fear my physical condition will deteriorate. Two years ago, something new happened which made Ive been in and out of the hospital for the past 18 months, undergoing several operations. It didnt improve my situation at all in the end. Thats frustrating! Fortunately, I always see the sun shine. The glass is filled up to the half. Of course, I wished to ride a bike, walk, work, visit people as long as I want to, travel etc. Since its not possible, I look around me and enjoy what Im seeing.
My message to other people with a disability is: the only thing that counts is what you make of your own life. Disability or not, everyone wants to participate in society. Its important to everybody to experience the feeling of being useful and to get satisfaction out of a day. Someone with a disability finds more obstacles on his path most of the time. Think of things such as transportation, accessibility and limited condition. That should not hinder one to make the best of it and to enjoy within your capabilities.
As her favourite music, Kim did choose 'Hall of fame' by The Script. A song that tells a lot about her perseverance.