‘I do not see myself as a person with restrictions. I am just Jeff.’

He was born deaf. And he will be blind as well. Jeff Horsten sings a self-written song about his restrictions on YouTube. The 23 years old man from Waspik, the Netherlands, suffers from Usher Syndrome, a very rare disorder. Still, Jeff surprises the people around him with his laughter, his creativity and his optimism. ‘I want to inspire people. I do not see myself as a person with restrictions. I am just Jeff.’ The film of his song ‘Welkom in mijn wereldje’ [Welcome to my small world] has been watched thousands of times and dozens of people have shared it on Facebook. The film was put on-line a couple of weeks ago. ‘Tears’, ‘respect’ and ‘goosebumps’ are responses to the touching song.

Not alone
‘I want to show other people suffering from Usher Syndrome that they are not alone’, says Jeff. He sings the song together with singer Jorien Habing. The text is about the ‘tunnel’, as the man from Waspik experiences his life. It refers to his deafness and poor eyesight: Jeff looks through two holes of half a centimetre in diameter. ‘People usually can see 180 degrees.’ When Jeff looks at someone, he must move along his head. His eyesight is blurred: now 50 to 60 percent. Jeff will eventually become blind. With the help of his friend, Joep Rijk, Jeff had the song recorded in the Swamp studio in Raamsdonk. The idea came up in rehabilitation centre Het Loo Erf in Apeldoorn, where Jeff has spent nine months by now. He hated music for years. Just because he could not hear it. “One moment I heard Ring of Fire by Johnny Cash. I managed to listen to the rhythm. Later I started to experiment with music. I sometimes take a guitar and play a little. However, it remains difficult because I cannot listen well myself.’ Jeff has plenty of texts. He writes a lot. ‘Writing is my way of release. It provides a means to express myself. As a teenager I often picked up the pen. It was a kind of game to me. Suddenly all emotions are lost.’ Jeff’s parents think that the song is really confrontational. Father Pierre: ‘I listened to the first lines but I let the rest of the song rest for a few days.’ ‘Of course, this is not new to us, but many tears were wept in our house when we heard the song’, according to mother Marja. Jeff’s parents experience their lives as a struggle for their son. To get him to the right school, to give him the proper guidance. His poor eyesight was discovered only after seven years. ‘As a boy, Jeff often had quarrels. I was at school almost every day to stick up for Jeff. Now we know that he could not express himself. He felt misunderstood.’

Jeff often stumbled over things, he became night-blind and fell over other children while playing. Marja and Pierre later heard in the Radboud Hospital in Nijmegen that Jeff suffers from Usher Syndrome. ‘We had looked up a lot of things on the Internet. Then everything clicked. We were quite sure about it. When then things are actually confirmed, the world stops turning.’
It is hard to accept that Jeff’s restrictions are increasing. He cannot participate in things that are self-evident for other people of his age. Marja: ‘Like riding a bike or a moped. Jeff loves cars, but he will never be able to drive one.’

I am always mentally tired.
I seem to get up with an energy level of 10 percent.

‘It is putting up with things again and again’, Jeff describes the setbacks. His resilience has grown in the course of the time. ‘I give things a place and I have become more flexible. Now I can say “I cannot do it”. I have no choice. In the past, I was only surviving. Now this has been changed into living. I am living. I have switched over.’ Thanks to a cochlear implant he can follow conversations fairly well. He can also talk. His voice is not really bright, because he missed sounds in his early childhood. Jeff manages to follow an education at the Prinsentuin College in Andel and is a qualified animal carer. Jeff can enjoy things, such as Johnny Cash, films of cars on YouTube and the dog that he hopes to have soon. However, despite his humour and positivism, Jeff is struggling with his feelings. ‘I have my difficult moments. Sometimes these last for a day. Then I withdraw into myself and I want to be alone. I do not want other people to see me like this. Shit happens. Everything has its price and I have to pay mine.’ At this moment, the man from Waspik is going through the last phase of his rehabilitation. Jeff is prepared to becoming blind at Het Loo Erf. It is still uncertain when this will happen. ‘I do not notice any major changes between one day and the next. It goes in tiny little steps.’ The man from Waspik is teaching himself some practical things, such as doing the laundry, cooking, shopping or read Braille. ‘Only 10 percent is about the restriction, whereas 90 percent of the rehabilitation is about mentality. They give me self-confidence. I can do much more than I think.’ Marja: “I am surprised about how cheerful everyone is at Het Loo Erf. Its; incredible. We can learn a lot from them.’ Jeff nuances: “In our tiny world there is no place for grey, as many people experience days in their lives. We are either happy or sad.’ His tunnel vision costs really a lot of energy. ‘The greatest problem is the fatigue. I am always mentally tired. It feels like I get up with an energy level of 10 percent. When I do something for a few hours, I have to go to bed. I have to prevent getting a burnout.’ When Jeff is ready with his rehabilitation, he has to take a big step. He will go and live by himself. In the centre of Waalwijk. 100 percent independent. ‘I do not want to live under supervision. Never. My parents are helping me really a lot. They do everything.’ Jeff will probably move house next year. This will be another difficult moment for the Horsten family. ‘We are afraid of the loneliness. This is our major concern’, Marja says. Jeff: ‘I am not easily frightened. I know this will be a struggle, but I have had to fight for everything in my life. I am convinced I will manage.’ His mother endorses this: ‘It has cost a lot of energy. Still we look ahead with a positive mind. We have already struggled, struggled and struggled for 23 years …’

Watch and listen to ‘Welkom in dit wereldje’

Source: Brabants Dagblad
By: Sjoerd Marcelissen