Living with Duchenne Muscular Dystrophy
My name is Daniel Harry. I am 23 years old and have Duchenne muscular dystrophy. I have often found in my life that others have considered people with DMD, who achieve things in life, to be inspirational. I would like to challenge this belief and put a different perspective upon it. A few years back I was a representative for Queensland at the NEWS and we had a guest speaker opening the games who made a comment that all the athletes there were inspirational and special people. But I thought to myself, ‘no this is not the case, we are not special, all we are is human beings getting together to play sport like anyone else.’
People may think I am inspirational but there are other people in this world who have prevailed over a lot tougher situations than I will ever have to deal with in my life. I feel this attitude has helped me a great deal throughout my life.
As you all ready know, muscular dystrophy is a terrible disease and can have a major negative impact on people’s lives. However the Dalai Lama has some very useful advice. He says:
Looking at problems from different angles actually lessens the mental burden. Every event has many aspects and naturally one event can be viewed from many many different angles. It is very rare or almost impossible that an event can be negative from all points of view. Therefore, it is useful when something happens to try and look at it from different angles and then you can see the positive or beneficial aspects. Moreover, if something happens, it is very useful immediately to make a comparison with some other event or with the events of other people or other nations. This is also very helpful in sustaining your peace of mind.
The first two major positives in my life are that I have been born into a family with two fantastic parents and I was born in Australia. These two positives have given me a major stepping stone in achieving what I have achieved. If you are going to be born with a disability, Australia is the best country to live in. We have a system here which you are able to speak up and fight for what you believe in.
Major achievements in my life include:
Traveled to Sydney, Melbourne, Canberra, Perth and Adelaide representing Queensland at NEWS from 1989-2001.
Chosen to represent Australia in 1992
Finished High School
Done an administration traineeship while working for two years
Currently attending University
Attended TAFE for 1.5 years
Went camping for a week at Moreton Island
Been to New Zealand
Went to the Australian Open (Tennis Tournament)
Been to Rockhampton on Tilt Train
Go on holidays every year
Play wheelchair sport twice a month
Was on committee for MACS
I believe it is important for parents to treat their children with DMD like they would anyone else. I have witnessed parents who have harmed the character and growth of their children by being overprotective of them and sheltering them from the realities of life. Doing this is not beneficial to the child, because the child needs to be treated like an average person.
Another thing that I believe is that dying should be something a young person with DMD must be made aware of and be encouraged to talk about positively and maturely. People often ignore the idea of dying because they are scared of it themselves. Dying is not something that should be considered bad, it is as natural as being born.
I may have missed out on some opportunities because of my disability but I can assure you that I have lived, and am living, a fantastic life. If people with DMD are given the proper support from their family and the government there is no reason why they cannot contribute to society and live a fulfilling life.
I would like to end this story with some more useful advice:
As a great Indian scholar said: ‘If there is a way to overcome the suffering, then there is no need to worry; if there is no way to overcome the suffering, then there is no use in worrying.’ That kind of rational attitude is quite useful.
-Daniel Harry, 2002