In 2014 I was entered into the Lady of the Erne, which I guess you could call a pageant here in Ireland. I was extremely lucky to have won this, and even more lucky to use it as a platform to tell people about Huntington’s disease. As part of the pageant, we had to perform a talent on stage, at the time in my life my talent included water, a water ski and a boat. Not something I could demonstrate on stage. I also had done a lot of public speaking, and work for HDANI, my local Huntington’s Charity, so I thought it was the perfect time to tell people about Huntington’s disease.
I am honoured to have has the chance to spread awareness about Huntington’s disease, it may be a horrendous disease but any chance I get, ill always tell them my HD story and spread as much awareness as possible. That’s why I do #imotdrunk, I want to tell everyone all about HD. If you are comfortable, tell people your HD story, people who may not know what is wrong with your loved one. It is so easy to get annoyed with people when they stare or say something mean, I did all the time. We can’t blame those who are not educated. Let us educate the world together. I read this poem on stage to a room full of people! A lot more than I could count, people from across Ireland and Northern Ireland, most had never heard of HD. Before this, I emailed my mum the poem and made her read it. She cried, several times!! On the night, when I read it, everyone cried. So please don’t cry! Here it is,
Heredity gives us 50% risk of death in prime Which one of us will be cut short in time? Chances are slim that we will be fine I see you watching me for signs of decline
There are many things that I wonder I don’t want to be left to ponder If it’s me who’s got the gene Will you turn away or be mean If food or drink is what I spill Will throwing me out be your will? If I am afraid to swallow Will you and I together wallow? If you see me stumble Will frustration be what you mumble? If I cannot walk or talk Promise me you’ll not let the public talk If anyone says I must be drunk Go ahead, scream at that ignorant punk!
If wheelchairs and restraints make their way into my fate, Know it’s the helplessness that I would hate If I look at you with a vacant stare Please understand that I am still there If I call you by some other name I may recall later that it was you who came Whenever I should go ballistic Always remember my true spirit is altruistic
And when I feel overwhelmed with despair Ill value knowing that you care Whichever of us deteriorate? I’ll forever resent this genetic fate Do not ask me to feel blessed Faith is impossible given such a tragic mess Growing apart I do fear
Please don’t become distant if my time is near Self-pity id be guilty of
If it’s me who dies, Stand by me with love
I believe this poem was written by Rebecca Ambrose and it is called Siblings, I love this poem and thought i would share it with you all.
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