As a child Mark was a pitch perfect piano player and he dreamed of a future as a musician. So when his sight and hearing started to deteriorate as a result of Usher Syndrome, he was distraught. He is now left with no useful vision and little hearing, exacerbated by tinnitus and visual hallucinations (Charles Bonnet Syndrome) which are each difficult to live with but when combined this severely impacts his everyday life. But, with the help of the right kind of hearing aids and some creativity, he ensures that his piano playing is still a big part of his life.
He said: “I am fortunate enough to have some very good hearing aids which make the piano sound very natural. Thanks to these, I use composing and improvising techniques to learn new music. I hear a piece of music and re-play it by working out which notes I hear. I will improvise various parts to change the music and make it my own as well.”
Mark, from London, regularly appears in concerts and has attended and organised various piano courses all over the country. One such course was the prestigious Cheltenham International Piano Summer School where he was selected to perform his own composition by memory as part of one of the main concerts. Mark recently performed a solo at the Barbican Hall as Resident Pianist with the London Symphony ‘Create’ Orchestra. He also has a regular slot providing background music at a local restaurant two evenings a week.
Living with a severe dual sensory loss is difficult but Mark has found music is a great therapy to help him cope. “It gives me the most amazing sense of wellbeing, I love the discipline, the creativity and the emotion of it. Playing is so exhilarating – it’s a natural high!” He said.
When he is playing in an orchestra, Mark has a Music Assistant who communicates between him and the conductor using a method known as Social Haptic Communication. “We have a tactile communication method which involves the Music Assistant communicating instructions to me, from the conductor, discretely on my upper arm. For example a circle means it’s my solo, a line up my arm is an instruction to get louder and a line down my arm means get quieter.” He said.
As Mark’s condition worsened, he was forced to give up his career as a Civil Servant in the Department for Environment, Food and Rural Affairs in 1996. He said: “I was given all sorts of equipment to help me do my job but it got to the point where I just couldn’t cope any more which was deeply upsetting.”
Desperate to keep busy and fill the social void that his job no longer could, Mark has become an active member of his local Deafblind UK social group in Camden. He really benefits from the group interaction and finds it helps him to manage with his sight and hearing loss. Mark has even held two percussion workshops with both the Camden and Newham and Tower Hamlets groups which the other group members really enjoyed.
Mark finds that one of the most frustrating aspects of living with dual sensory loss is being unable to access information independently. Therefore, Deafblind UK’s Information and Advice Line has been enormously beneficial to him. Mark regularly makes use of this service, particularly for things that we often take for granted: “I find it extremely helpful; as I have no sight I can’t use websites so I frequently call and ask for someone to look things up for me. It makes a big difference to me and I find it reassuring to know that this service is there when I need it.” He said.
As he is unable to work, Mark relies on benefits to support him. However, this in itself poses another difficulty for someone with sight and hearing impairments; simply making a phone call or completing a form can be challenging. So, Deafblind UK’s Community Engagement Officer, Tania, supports Mark in liaising with his Local Authority and to complete the relevant forms. She has also attended Department of Work and Pensions (DWP) assessment interviews and the local authorities annual assessments with Mark to help ensure he has relevant support he requires.
Mark says “Tania helps me to let other people know about my condition which is essential, especially when we are dealing with the Local Authority or government departments. I don’t look deafblind, so if you didn’t know me, you wouldn’t be able to tell. Tania helps to ensure that where possible I am put in contact with someone who can help me and who is preferably trained in deafblind awareness. Hopefully we will be able to make sure more organisations are trained and qualified in how to deal with people having both sight and hearing loss soon.”