Thursday June 01 2017 02:18 PM
This week to mark the occasion of World MS Day, Aoife Kirwan talks to TDs and Senators in Leinster House about the quality of life for people living with MS in Ireland. Read Aoife's inspiring speech!
‘I'm here to talk to you this morning as a person with MS but I am much more than that. I am many things, a friend, a sister and mother. I am a person with hopes, dreams and ambitions. I, like each of you - and each person who makes up our country's population, am Ireland. I'm proud of my heritage, my culture, my country but I'm scared.
I was diagnosed with relapsing-remitting MS in 2011 -aged 23. I don't think there's any way to fully prepare you to receive that kind of news as a young person, a student, someone who is just about to embark on life's journey after almost 20 years in education. I was heartbroken. Instead of excitement for the future, I feared it. I feared the unknown. What would my life be like from that point? How was I to move forward? The symptoms of MS were frightening, I had a string of them, one thing after another but the diagnosis came after I lost 98% vision in my right eye. Worse than the fear of MS was the fear of what MS meant? I grieved for the life that I planned but I could no longer count on.
Everything became tainted with 'what if'. What if I lose my independence? What if my condition deteriorates? What if I become so bad that I can't work? What will that mean for me? For my child? How can I build and secure our future? What if I become a burden on my family? What if, instead of helping parents as they age they are the ones trying to take care of me? These are not the common fears of a 23-year-old. Instead of bouncing into my future like I thought, I was being dragged. I felt sadness, I felt grief, I felt despair. MS doesn't have to mean fear. With access to the right services at the right time - I can let go of grief. I can let go of sadness. I can let go of despair. I can embrace hope. I can embrace happiness. I can embrace my future.
I don't want to have a lower quality of life than others. I want the quality of my life to be determined by the amount of effort I put into it. By maintaining my quality of life I can follow my destiny without fear. 60% of people with MS across the EU are working, in this country, that figure falls to 43%. Why are we less worthy? What does that mean for my life? My future? My child's future?
As a mother there isn't much that I think about that doesn't involve my child. He looks to me for everything- for guidance, for love, for support, for sweets. I wonder how many of you are parents? What kind of Ireland do you want to leave your children? I want my child to see his community and his country working together to help each other. I raise him with values that I believe will help him to be a positive and valuable member of society. I teach him to be respectful, to work hard, to think of others. He is Ireland.
There is no strength without unity. In a time of political uncertainty across the globe, it is important that we look inwards, that we look after each other and support each other. The MS community is strong and I stand before you as one of over 9000 people with MS in Ireland. We are powerful. We are passionate. We are positive. But our positivity is not to be mistaken for lack of struggle. Each of us has our own symptoms, our own stresses and our own stories. I encourage you to read Declan, Niamh and Magg's case studies which you will find in the report. We have lives behind the numbers that you see throughout this report. We are people. We are Ireland.
You have the power to help me and others like me to stay well, to have the opportunity to live life, to raise families, to work, to contribute to society instead of being a burden on it. Putting vital services in place will allow me to live the life that I dream of. To ignore the needs that we are telling you we have, is to condemn us to a future that we deserve more than. You have the power to change the path of each person with MS. Leave your mark, leave your legacy; let it help me to make mine. Let it help the thousands of people with MS live the lives they deserve to live. You can make this happen. You are Ireland.
We are all Ireland and I stand before you, asking you to be the Ireland that I and over 9,000 people in this country needs’.
Ni neart go cur le Cheile