IMPACT OF THE DIAGNOSIS

Receiving the message that you or your child will become deaf and blind because of Usher Syndrome, this can be really shocking. Everyone responds differently to this. The one person will be very scared, the other will mainly be angry and yet another will be numbed by the news. Everything may suddenly have become completely senseless. It may also be that the message initially does not fully get through to you. Then the full understanding will come at a later time.

SELF-IMAGE

The way you respond to the diagnosis depends, among other things, on the following:

  • the stage of life that you are in.
  • the way in which the people around you react to the diagnosis.
  • how you grow up and the education that you receive through special education or through regular education. These are important ‘environmental factors’.
  • the extent of your poor eyesight and hardness of hearing, deafness and loss of balance. Of course, these are really important as is the chance of any perspective and hope for a treatment.
  • the development and the fastness with which eyesight and hearing deteriorate. Every moment requires a new way to deal with things.
  • the chances you will be given to study, to obtain a diploma, to work and to participate in the hearing and seeing society.

J“As an adolescent, I always thought that everything would be over by the age of thirty. By that time, I would no longer be able to see and hear, and be dependent on other people. What would my life be worth then? “

YOU DO NOT SUFFER FROM USHER SYNDROME ON YOUR OWN

Usher Syndrome is not a disease you suffer from on your own, as it has a great impact on your family, partner and children as well. Read more about this in the sections ‘Child and family’ and ‘Relationships’.

IN DAILY LIFE

LIVING LOSS

“If you have to live with an impairment, this will not be over at a certain moment. You have to be able to organise your life with those limitations every day again.” Manu Keirse

LIVING LOSS

A“It is like a computer game. Every time I master a new level, I lose another piece of eyesight, which means that I have to be more creative in order to be able to keep doing what I want to do.”

DISBELIEF AND POWERLESSNESS

J

“I was sixteen and completely in shock. It is really something to be told that you will slowly become both deaf and blind at such a young age.

L

I was scared and felt lonely. I did not know anyone who suffered from the same disorder. I had to go through this alone. I would become dependent on others.
How could I remain in charge of my life? What is living exactly? Sense was nowhere to be found.

THE FIGHT AND THE BATTLE

C“As a child, the deafness affected my self-confidence, but it also stimulated my fighting spirit.”

L“I did not want to become dependent on other people, unable to go to the supermarket on my own. Therefore I did not learn Braille and I do not want to use a white stick – I just can’t.”

FLEE AND HIDE

C“I kept myself going be means of a kind of (self)-mockery. I also sometimes pretended to be more pitiful and ‘disabled’ than I actually was. For people do get suspicious indeed when you walk without a white stick in the afternoon and use a white stick in the evening.

J “I have my difficult moments. Sometimes these last for a day. Then I withdraw into myself and I want to be alone.”

DISCOVER USHER

D“Meeting another fellow-sufferer eased my mind. I realised for the first time that I did not have to worry so much about the future. There is a solution for everything.

J“I do not have to dwell on the fact that I am losing my hearing and eyesight, this will happen anyway. I will manage – this feeling is so meaningful to me.

GET USED AND GO ON

J“I cannot change the fact that I suffer from Usher, but I can change the way I deal with it. I try to let it go and to live by the moment.”

J“If I think about this every day again, I will go mad. My grandpa got blind only in the last year of his life and this gives me hope.”

ADJUST AND FIND NEW POSSIBILITIES

R “Usher forces me to push the frontiers every time again, as I continuously lose things again and again. I try to remain as positive as possible and to do my thing. I do not always find it easy to accept my impairment, but I have learned to deal with it.

M“I live today. Whatever happens, I will find a solution to cope with it”

SEEK HELP

The first period after having received the diagnosis is a tough period for most people. It seems that you have lost your grip on life. What may help here?

  • Talk about it
    If you feel the need, talk about what you are going through. You can talk with someone who is close to you, for example your partner or a good friend. Or you can talk with someone who is less close to you, for instance someone working for a patient organisation or a spiritual worker.
  • Contact with fellow-sufferers
    It can also help to talk with other parents or people who suffer from Usher Syndrome themselves.
    Meeting fellow-sufferers can be really confrontational, especially if the others are further in the process of the disease. This is your future and this can be really difficult. At the same time, a meeting can also have a very positive effect. There often is mutual recognition, you know – often without words – what the other needs and, besides, it may help you to hear what will still be possible at a later age even with the impairments.
  • Write about it
    If you rather want to keep things to yourself, then try to write about it. It may often help to put your feelings and thoughts in words. This will enable you to distance yourself from it a bit.
    It can also be nice to keep a blog. Here you can express yourself and at the same time keep people around you informed about your worries, fears and feelings.

A“Everyone is struggling with learning to cope with the diagnosis for Usher Syndrome and everyone experiences things in different ways. You can learn a lot from each other.”

Sometimes things do not go the way you want or you need extra help. It may be that experiences from the past are hindering you to learn to live with the diagnosis for Usher Syndrome. Timely seek the proper professional help with respect to this.  For instance, try to find a good psychotherapist who can support you.

I“When I had finally reached the point that I could talk about the pain of violence and abuse in my childhood, my living with Usher automatically seemed to become ‘easier’. I felt confident again, for I was in charge of my life again, even if I will become dependent on the eyes and ears of others. I may and can refuse help and set my limits again.”