Anniversary Book of Muscular Dystrophy Ireland - 40 Years of Support and Solidarity
10 November 2012
During 2012, I worked with the wonderful people at Muscular Dystrophy Ireland (MDI) on the writing of the organisation's 40th anniversary book. The book charts MDI's history from 1972 and was distributed at an MDI anniversary event in Dublin in October 2012. It is set for an official launch soon.
It is priced at €15. For further information, visit http://www.mdi.ie/40th-anniversary-book.html
Below is an extract from a chapter where current members reflect upon their experiences with MDI and on living with muscular dystrophy.
Member Sammy Brill certainly lives up to her name...
Member Interview: Sammy Brill 'I wish I could fight for everyone.'
Sammy Brill at home in Athlone, Co Westmeath
Sammy Brill is captivated by the life and times of Marilyn Monroe, a fact that bears testimony upon entering her cosy home in Athlone, Co Westmeath. There are so many pictures of the Golden Globe-winning actress that you can almost feel Monroe eavesdropping on all that’s said.
Sammy explains that she has long admired the classical beauty and talent of the late actress and notes how these attributes concealed Monroe’s considerable inner struggles. Sammy feels that people should ‘try to be happy’, but she understands that this can be hard for some.
Aside from a fascination with Marilyn Monroe, Sammy adores Bon Jovi (‘I almost met them once’), loves socialising, and hopes for a bit of romance. She sounds every bit the bubbly 33-year-old that she is, and yet she has faced challenges above and beyond her years.
Sammy was born with Anterior Horn damage, a neurological condition affecting the spinal chord’s nerve cells and the voluntary skeletal muscles of the muscular system. It is allied to muscular dystrophy and has resulted in Sammy being a wheelchair user since infancy. ‘Mum knew there was something wrong,’ says Sammy of her early years. ‘When I was crawling, I’d crawl with my hands twisted.’
In more recent times, Sammy has come close to death, endured a tracheostomy, spent a considerable time in hospital and battled with the HSE for home nursing care. She credits the strength instilled in her by her mother and late father – and the support of MDI, where she is a Board member – with helping to see her through.
Originally from London, Sammy emigrated to Ireland with her mother at the sensitive age of 15. Her new home was near the small village of Lecarrow, Co Roscommon. It was a severe culture shock. ‘There were two pubs and a shop, and we lived two and a half miles out from that!’
At the age of 20, she went on to study for a social studies certificate for two years at Athlone IT and it was just after this period that she first became involved with MDI. Her initial contact with the organisation was through the family support service and she remembers MDI organising a carer for her one weekend so that she could travel to Galway. ‘I was able to do whatever the hell I wanted,’ she says, of this empowering experience. ‘I went to a night club, I went out. It was like...freedom.’
She has since been on numerous group trips with the organisation, including to Madrid, Lanzarote and Malaga and has benefited from MDI’s loaning out of equipment including wheelchair-accessible vans.
But aside from practical supports, Sammy suggests that it has been the moral encouragement she’s received from MDI that has mattered most. ‘They gave me hope,’ she says. ‘It’s when I met them that I thought it was possible to move out [into independent living]...that’s kind of when I started fighting for my rights with MDI’s help. Joe [T Mooney, MDI chief executive] would have the same type of personality in terms of fighting for what we believe in.’
This support was especially vital when Sammy was confined to Portiuncula Hospital for nearly two years due to a lack of funding towards home nursing care. Her situation only changed when she personally relayed her case to the then health minister Mary Harney, who was opening two new units at the hospital in February 2010. Sammy got the home care she needed in May of that year and continues to live an independent life with the support of family, friends and carers. Sammy says MDI’s support has echoed the encouragement she had received from her parents, who would always tell her to ‘get out there and get on with it, you are who you are’. She strongly credits MDI as having people who understand the condition at the heart of the organisation. ‘We know what other people are going through; well, we kind of know,’ she says.
Sammy is presently serving on MDI’s Board, a platform which has helped her cultivate a voice. She is glad to have become involved, but initially felt a bit reluctant to put her name forward. ‘Siobhan [Windle] forced me to go on it,’ she says with a smile, before adding: ‘Not forced me, but coerced me. I’ll think of another word – persuaded!’
In May 2008, Sammy headed to Brussels to attend the European Conference on Poverty and Social Inclusion as part of a wider European Anti Poverty Network (EAPN) network, with which she was linked by MDI. Sammy kept notes of the trip:
Our group was Housing and Social Inclusion. We listened to all the presentations that had been prepared. I found them very interesting. Hearing that people all over Europe were experiencing the same problems and that Poverty and Social Exclusion was a very wide problem...It was at this point that I really truly believed how important what I said and did really was. Michael, who had come representing the Simon Community in Ireland, and I did our presentation together...We spoke about the problems with Housing and Social Inclusion for homeless people, refugees, Travellers and disabled people in Ireland. I was very nervous but was very pleased when I had it done.
MDI has given her the encouragement to ‘pursue what I already had in me and use it a bit more...I am a fighter and I always fight. I fought to stay alive.’
Of course, there are days ‘when you say, for f**k’s sake, just give me what I need and stop making me fight for it’, but Sammy says her inner desire to improve her situation always kicks in.
‘I feel sorry for people who don’t have a big mouth like me and don’t fight like I do,’ she says. ‘Some people just don’t have it in them, don’t have the energy or are just not physically able. I wish I could fight for everyone.’