Thursday 12 September 2013

[12] This Is Our Party


-- We did it our way! --
In early August I spent a long weekend in Dublin, and asides from lighting digital candles I turned into a tourist for a few days. I was supposed to blog that week, but got stopped by a kidney infection that brought my temperature to an almost record high of 39.4C within a few hours.  This is that long overdue blog.
The beauty of going from Northern Ireland to the Republic of Ireland is that I get to keep many of the tastes and sounds of home, but still have to hate roaming phone charges.
We started off our three hour long roadtrip with me drowning myself in loud music. It ended that way too. We spent no longer than an hour at the revolutionary Muscular Dystrophy Ireland Home from Home before we took off to see Peter Pan at The Helix.
En route on the streets of Dublin we hit a far too well hidden speed bump. This caused me to come completely of my chair and fly in the air for a few seconds. I landed awkwardly on my right side and I ended up with a painful right shoulder, neck, side and hip. I three nights without much peaceful sleep as a result, and my hip still hasn't fully recovered as I don't have a fully formed hip.  I'm more interested in more recent injuries now caused by a suddenly faulty mattress.
Of course, six hours without a cup of tea is completely unacceptable. Tayto and Tea became dinner, before I accidentally ran over some poor woman's toe while in a tight space. Peter Pan was highlighted by a little lad thinking it was Panto season and shouted that Peter was behind the rock during the Lagoon scene to rapturous laughter. The quote of the day definitely went to the nephew, who exclaimed that the cartoons were "speaking China" when I put an Irish language station on.  A widespread relief washed over him when the iPad spoke English to him.
20130816-234322.jpg
Pre-Show tea!
The next day, asides from being Candle Day, was spent at the zoo. Belfast Zoo is built on a mountain and me driving on the hills gives me the heart rate of someone doing an Iron Man race! So when we get to Dublin this is always on the top of the list. Kian started presenting his own nature show in front of some of the animals to my amusement, and I found my Squirrel Monkeys. And I even managed to avoid getting wet! Kian and I were both crazy in our amount of fun, even if he did sit on my knee most of the day so I could cart him around.
20130816-235226.jpg
I spent my 2013 SMA Candle Day in a zoo, yes.  I also spent it talking to a new friend with Cystic Fibrosis from Dublin and putting a digital candle on my phone.  I lit it as much in memory and support of all the Angels and earth warriors with SMA as I did for all other types of neuromuscular disease.
Candle Day
Candle Day
The next day we got to visit Kilmainham Gaol, a former Irish prison.  When I studied history as a GCSE student, I understood Americian, Russian and even Asian history without much of an issue.  The very second that there was Irish history involved I was confused.  I credit a local writer with the fact that I actually passed that section of the exam.  When in Kilmainham I was in the spots where the people we learnt about met their death, and their futures.  I saw their cells, and how they lived.  The irony of it all was that it was so much more accessible than what I've been told of the modern day prison.
Kilmainham Gaol
Kilmainham Gaol
We then skipped over to the interactive medieval museum Dublinia, and I laughed the whole way through it. My nephew dressed up multiple times, and definitely looked like something out of How To Train Your Dragon.
Viking Hut Family
Viking Hut Family
From there, I assumed my natural throne as high navigator of the unexplored lands, and found my way to the Wax Museum, which presented me with one of my favourite things - science.  Right down to Batman and the ejector seat which was invented by a local man from down the street.
BatDude
BatDude
Ejector Seat Daddy
Ejector Seat Daddy
On our way back to the car we found the awesome Mr Simms Sweet Shop.  It's safe to say I exited with enough sweets to last me the rest of the month.  They also had pretzel M&Ms which delighted me to no end.
Our last day in Dublin was bittersweet, but gave me the best pizza in Dublin, cinema and my favourite picture of the whole holiday.  It also reaffirmed my hate for cobble stones.  I hate the things more now than ever.
Kian and Angela impatiently awaiting pizza.
Kian and Angela impatiently awaiting pizza.
Kian and me dodging the rain.
Kian and me dodging the rain.
Of course, no trip to the cinema at the moment is complete without a picture with One Direction, however crazy you may look doing it.  Dublin clearly knows that I'll be back soon to see those very people sing up a storm.
IMG_1659
And with that, we headed home.  We will be back soon, as my obsession with Wicked will lead me south in December.  Until then, it's back to university in just over a week.

The music this time comes from the amazing Savannah Outen and Jake Coco.  Buy their stuff and support independent music!

Thursday 5 September 2013

[11] The Sky Will Guide You Home


-- When the darkness comes... --
When I was just 16 I attended my first Muscular Dystrophy Campaign lobby in Westminster.  I was greeted by MP's, Ministers, Peers and a Clay Aiken look-a-like who has become our high master of all things lobbying.
The 16 year old me was quiet, shy and often petrified of starting a conversation.  I very quickly found a piece of home in that room and in those halls, and I had my first conversations with Dave Anderson MP and Baroness Thomas.  Those two individuals constantly battle on behalf of those of us with muscle disease in the chambers.  Within those few all too short hours, my eyes opened and I began to realise the difference just talking to people can make.
With Dave Anderson MP
With Dave Anderson MP
With Ivan Lewis MP and Baroness Thomas
With Ivan Lewis MP and Baroness Thomas
After that day, I couldn't stay away.  I was back and forward so often that I actually had a steward ask if Dave was my MP when we were talking in the corridor.  We started making real progress on a UK wide front, and it was time for Northern Ireland to make some progress itself.
In January 2010, a 19 year old me went into my second AGM of the Northern Ireland Council for the Muscular Dystrophy Campaign.  On the agenda was a visit by Carmel Hanna, an MLA who had just retired from public life.  Instead, a Dubliner cycled in and filled the room with so much fresh air that we were all bowled over.  So many of the things he said made sense, and within a half hour he got us, and what we fought for.  While what he said will never leave my lips or fingertips, his words of wisdom that day will never be forgotten by anybody in that room.
That person was Conall McDevitt.
Before he left that day, he had managed to find out that I was a Broadcast Journalism student, told me that he had just left the world of PR and not to let go of the power of the written word over the spoken.  Little did I know of the power he would bring to our voices, or the progress he would give us.
When we established our Muscle Group here in Northern Ireland, Conall was the first to cut through the air and fix problems.  He wanted details, phone numbers and names.  He got people jobs, he gave their failing muscles strength.  Most of all he gave me hope.  A light at the end of the tunnel that we just might get there.
By the end of that meeting he had found out that I was moving into the world of PR, and gave me a valuable early insight into the world of communication studies and applications.  Stormont was about to dissolve to allow the election to take place, and it was then that he told me that whether he won back his seat or not, he would make sure we got an All Party Group.
Election time was the hardest election I've endured, except for the Obama through the night results.  When I finally heard that Conall had been elected, the cheers through the Hollywood household could have been heard in California.  We were delighted, and the public had picked a man we knew would represent his People with all heart, soul and gusto.
September came, and Conall sat in our Chairperson position.  He opened each session thanking people for taking time off work, and praising me for being a University rebel and skipping class once in a while.  He led us with grace, intelligence and humour.  He examined some of the most cruel disability on earth, while he somehow managed to only see people and not wheelchairs or ventilators.
When we started people were being given devastating diagnosis over the phone, wheelchair services were horrid, and the Health Minister didn't understand or know what was going on.  Piece by piece, Conall helped us put our jigsaw lives together into a report.  A report that will transcend millennia as our first step towards a better future.
In his two years with us, Conall has gave us laughs, gave tears less reason to fall and he has improved our services beyond compare.  Yes, they were our stories, and yes there were teams behind him.  But if one man doesn't take a stand, progress can never be made.
Walt Disney always said to Keep Moving Forward.  We never moved as forward in the past as we did with Conall at the helm.  He's helped many of us individually, and all of us collectively.  He taught me what a true politician stands for - progress, honesty and their People.
Without wading into too much politics, Conall made a simple, stupid error.  I made a few of those in my time.  It's life to make mistakes.  Unfortunately, one tiny slip as a doctor or a public figure can ruin your professional standing in moments.  Make a huge blunder in an office, and you're just told off.
While Conall did the honourable thing in stepping down, there are things asides from his politics we'll all miss.  His wit, his football crazyness, and the constant will to move forward.
For many of us there is a Martin Luther King, Nelson Mandela, or Bob Dylan to spur us forward.  Conall guided me through much more than a report to improve neuromuscular services.  He was and is an unofficial mentor who showed us all the lines between honour and dishonour.   His politics will forever be a breath of fresh air, and his lessons will never be forgotten.  As he moves away from public life, I know we will still receive his wisdom, as he serves us in a different capacity.
Conall will find the sun in this situation.  He will continue to be a positive footprint on this earth.  I look forward to running in a marathon beside him in my wheels.  He has my respect, thoughts, prayers and positive vibes.  All the methods and words of thanks in the world could never repay what he has given us.  This is a thank you, a good luck and an acknowledgement that he can't get rid of me by resigning!
That being said, I have one final public message for Conall.
Keep Moving Forward.
Conall McDevitt
Conall McDevitt
Please buy Colbie Caillat's When the Darkness Comes from iTunes as it isn't available on YouTube.  The light will shine again!