-- No-one can hold me back. I ain't got time for that. --
Today is August 31st. I'm awaiting my letter from University for my final year induction, and I feel like I'm going to be flung into a whirlwind. I'm recovering from a nasty UTI, and my liver is most definitely suffering from the treatment for it. My stomach isn't playing ball either. I have a 12 months ahead of me which I know will bring me hugs 10 years in the making from Kayleigh, music I can dance to, and Christmas in a thousand different ways.
August is SMA Awareness Month. So many of us seek a cure, a treatment, something and anything to stop hundreds of kids going to heaven every year before they even see their second birthday, dozens of those before they turn eight months old.
My chance at a cure is gone. My hips are too malformed, and my knees too stiff to let me even stand if I could take weight on my feet. I stood only once, when I was about nine, being held up by too many people to count and I screamed harder than I ever have. If someone walked in my door now and offered me a cure, I would refuse it. My mum would probably curse me up and down for it.
If someone walked in now with a treatment which gave me a chance at a healthy life where I could go dancing in the rain, wave my arms at a Jason Mraz anthem, and let me give free hugs instead of receiving them then I would have it in a split second.
If Music is the food of Love...
My wheels are part of me. I like speeding down empty hospital corridors after nine with my nephew when I'm supposed to be on the ward drinking plenty and resting. My room has as much hospital equipment as it does evidence of a 23 year old who acts like a big child. My desk is dotted with CD's, bead art, and a picture of the biggest day of my life signed with a message from the man who pushed me towards making a difference instead of just existing.
Truth is, I was sick this August. But I haven't coughed up any nasty stuff since April. APRIL! I'm singing in tune again, in one of my rare moments of lung health. There are bruises on both my wrists, the inside side of my right arm, and a red needle prick between the knuckles of my left hand. But I don't have bruises on my ribcage, and it's not painful to breathe.
When I was discharged on Tuesday, it was so I could go home. I had missed too much cinema to do that, and went straight to my local. Since then I've seen Elysium, This Is Us and The Mortal Instruments. I've all but moved into screens 3 and 5.
Being a fangirl never hurt a smile!
Truth is I have SMA. I have to fight it every single day, not just in August. I hate it when it makes me sick. I am honoured to fight beside my fellow SMAers.
I'm catching my breath from my most recent antibiotic. There's no point in stopping to do it. I will keep living, fighting, breathing, singing and probably giving politicians headaches. I will never be normal - I'll always be a crazy Claymate, WordNerd, Obama-loving wheelie trying to bring chariot races to the masses.
I'll always have SMA.
SMA makes me who I am. I'll spend the rest of my life making tyre tracks, and proverbial footprints. I wouldn't change that for the world, aliens or Tonto's humour.
As part of my recent official induction into Directioner-land, I've been discussing all things One Direction with a long time friend. When we got chatting she happened to mention that the boys are what I define as huggers.
There are plenty of huggers in the music and entertainment industries, and there are just as many hand shakers and wavers. I've met my fair share of them all. But I'm a wheelchair kid, and people don't realise that something as simple as a high five can take two or three minutes for me to pull off.
When I was little my physiotherapy routine included as much activity in my arms as possible. For you, playing with Woody and Buzz was probably the easiest thing ever. I always needed an adult on hand to help me pose them whichever way I wanted. But it was good exercise. Fast forward 12 or so years and I've grown substantially - from 22lbs when I was 11 to 60-70kgs. With that weight comes strain on my muscles so I just can't move as well as I used to.
Although kids are able to hug me, I'm rarely able to hug back. The only time I can actually achieve that is when the kids actually pull my arm around them. I used to be able to bring one of my arms round the other person myself, but as I've grown big that has now become impossible. So I get hugs like these instead.
Kian gives the best hugs!
I want you to look at the picture of me with my nephew and think - when was the last time you hugged someone in a wheelchair? Now, there are certain times when I can't have hugs off family, like when they feel slightly sick. The wrong infection can land me in hospital for months - but most of the time I'm free to hug.
A hug is warm, soulful, friendly, supportive and full of muscles. Most of us with severe muscle disease can't remember the last hug we gave to someone, and so often it's the only thing that'll help. There are two things which heal all my ails - hot tea with milk and two sugars, and hugs.
While my family are used to hugging me and not asking, most other people don't even seem to consider that an option. I've found a few exceptions though, and they are my gold medal winners.
One of my old carers has a young daughter. We often see her out and about, and you know she's coming when she squeals my name and flings her arms around me. Despite having never really had much contact with someone in a wheelchair, this was the first thing she did when she met me. She is a pure star - love always goes out to her!
I met Jo O'Mera of S Club 7 fame shortly after my spinal surgery in 2000 as an incredible present from Paul Ward. The 10 weeks I spent preparing for my rods to be put in was done to a soundtrack of S Club. We have a picture in the house of me with her and her arms wrapped around me. Top girl!
H from Steps - also known as Ian Watkins - is probably best described as a childhood crush, even with the curtains he rocked. I met H and the rest of the Steps gang when I was about 9 - before my spinal surgery and shortly before I was due to try an implanted hearing aid. He spent over 20 minutes with me during the meet and greet - during which time the rest of the guys had seen everyone and were already gone. He hugged me, kissed me, tickled me and more. H is honestly the most genuine person, and I will never forget how incredible he made my experience.
Top of the pack by a clean mile is the one and only Tyler Ward. If you haven't heard of him, popping his name into YouTube will show you the sheer popularity he has as an independent music artist, starting his career from his parents' basement. After suffering a major anaphylactic shock to an IV antibiotic I had been receiving for a number of years, I had the choice of a present. I got to meet Tyler, and I got my puppy. When the meet and greet rolled round I was still suffering headaches and tiredness from my anaphylaxis, but was ready for a string of concerts. I came round the curtain in Speakeasy and got a huge grin and what was definitely the biggest, most genuine hug I've ever had. I still haven't quite recovered. What was even more amazing is that Tyler was taking all the high fives and hugs he could get, whether or not I could give them back. Without a doubt an incredible artist, but an even more amazing human. Superhero!
Tee-Tee the Very, Very Awesome
This is just a selection of the hugs I've had from incredible people. But I wanted you to see all sorts of huggers not be taken back by disability.
Mandatory Credit: PNP/ WENN.com
Here is Nicki Minaj - American Idol judge and singer - hugging a man at a signing she had in New York City. Top stuff from someone I secretly wish wasn't on Idol.
Adam Lambert!
We've all established that I love Adam Lambert. But when he's hugging someone with muscular dystrophy I can't help but love him even more. It's impossible to not like him now!!
K-na and Clay
I think we all know I love Clay Aiken, but even more right here. My late friend K-na had an undiagnosed type of muscular dystrophy due to the Chernobyl incident. She met Clay three times - this being the first during the Independent Tour. She met him during Christmas in the Heartland too, and both times he has his arm around her and couldn't possibly get any closer unless he sat on her. Shortly before we lost her, Clay appeared in Spamalot on Broadway, where he remembered her and fixed her glasses. Below are two different angles of Clay talking to her at the stage door on March 15 2008.
But there's one thing about Clay Aiken. If you have a disability, you will never get different treatment. He remembers and hugs many of his fans. It just so happens that he completely forgets about the disability and can only see the person. I sit and watch him perform in concerts, get excited that he's doing all sorts of things, from my computer. I have received my own gift from Clay thanks to magic fairy dust and Christmas magic where he signed a picture of me carrying the Olympic Flame.
Receiving my gift!
I've truly been blessed by the best Claymate friends anyone could ask for. Clay has brought us together through music, and used his voice to tell us to use ours. He is what I wish everybody could be - open, accepting, loving, funny and honest.
The next time you see someone with a disability, don't just wave at them. Hug them tight. Follow Clay's lead - see the person in front of you, and honour them by treating them just like the non-disabled.
I'm currently teaching myself to hug using my WREX arms. I'll update you every time I'm able to hug someone. Slow progress is progress. If I ever meet One Direction my goal will simply be to not accidentally hit one of them if I get a hug! I've hit far too many people by accident already.
Please send me your pictures of you hugging people - and I'll put them all in a gallery for us to enjoy!
To wrap this up I want to share some pictures of incredible friends with SMA.
Jacobson Family
Cory and her husband Ian just welcomed little Kinley into the world back in July. She's almost two weeks old and thriving on her mom and dads' love. We're all sending our congratulations as Kinley makes huge progress towards getting home!
Zion and Zoe
Zion has SMA and uses a life support machine just like mine every time he sleeps. He's here with little sister Zoe and is one of our happy go lucky kids we all love to follow and support!
The Gardner Family
Cashel Gardner runs his Facebook Page SMA It Forward from his bed using just one thumb. He and his sister Ali have the most severe form of SMA - Type 1. Support Cashel and go like his page!
To finish off please listen to Clay singing Don't Save It All for Christmas Day in Clearwater on his Christmas tour in 2012. Clearwater is one of the friendliest places on earth and I've never been treated as equal as I was there in May 2002.
Life is often like a fire. It burns, sometimes eating forests of life. Other times, it struggles in the rain. For all of us with muscle disease, we must find ways to burn strong through tropical rainstorms. More than anything, we must fight for each other.
Spinal Muscular Atrophy is just one of many types of neuromuscular disease. These muscle-wasting conditions affect 70,000 people right across the United Kingdom. An estimated 2,000 of those live in Northern Ireland. I can count the number of people living with SMA I have met, face to face, on two hands. I have met dozens of people living with neuromuscular disease. It is that which makes the Muscular Dystrophy Campaign community so special.
I have seen families with numerous types of muscle disease infiltrating nieces, nephews, brothers, sisters, sons and daughters. I have also seen families with just one strong flame who they fight with and for. Our conditions have different names, but one thing roots us to the ground - our muscles. One way or another, we struggle to get our muscles to do what we want them to. Gravity becomes our enemy, but many of us find a way for the dark side to help us unwittingly, and we balance our wobbly heads on weighed down shoulders with the help of gravity.
This past weekend I had the honour to help a condition other than SMA. Duchenne Muscular Dystrophy is a condition which robs mainly young boys and men of the ability to run, jump, and in some cases the ability to breathe. I have lost many family friends to this cruel disease, which I refer to on the days when my knees hurt more, or I can't catch a breath for coughing. To have the ability to run and jump and to end up in a chair some day is so much worse than just never being able to do it in the first place for so many reasons. My family struggle to see that from my point of view, but to me there's always something worse I could face. I'm eternally thankful for the fact that I never learnt to stand, as that makes sitting so much easier.
One of the friends we lost is Christopher McCollum, a young man who lived for sport. Whether it was Manchester United or Belfast Giants, he'd know all the ins and outs. Cheering him on was his mum and dad. When Christopher passed away, they devoted themselves to improving the lives of others like him for generations to come. The McCollum Report on Muscular Dystrophy was named in memory of Christopher as much as it was in honour of the efforts of his parents, who were named Campaigners of the Year by the Muscular Dystrophy Campaign.
Christopher McCollum
The Christopher McCollum Fund is a charity set up by his parents to raise money to fund equipment for other young disabled people in Northern Ireland. They are currently Sainsbury's Bangor Charity of the Year. I had the honour of joining them on Saturday to help with their fundraising efforts, half of which is going to the Duchenne Research Breakthrough Fund. As much as I live with SMA, there are thousands in the UK alone living with Duchenne. Their fight is as important as ours.
When I received a phone call to ask if I would like to have the honour of carrying the Olympic Flame on its journey around Northern Ireland, I immediately said yes. As much as it would be a great victory for me personally against muscle disease, it would make a statement. We are here, we are citizens, and we stand alongside you all as people achieving dreams, living life, and loving life. More than that, I knew people would stop and not think about my disability, but me. I had one wish through it all - that Torch and the Flame it held were sacred to Olympus, but to everyone in Northern Ireland who had lived through muscle disease, whether they had it or someone they love. So I made the decision to not sell my Torch, but to share it with the community in what I like to call Torch Tours. Rather than show up with the standard bucket, I wanted to bring my Torch out of the living room and share it round for a little while.
Sainsbury's Flyer
Fundraising has been in my blood ever since dad put his cap on the floor when he was waiting with Martina and me on mum coming out of an inaccessible shop and a man threw £20 in. When I get to do more unique challenges, I thrive on the fun I get to have. Provided I have an unlimited supply of tea, you know it's going to be an illegal amount of FUNraising. This was my first outing with The Christopher McCollum Fund, and the first time I had the chance to specifically support a particular condition - in this case, Duchenne.
I met hundreds of people, so many of whom had an unparalleled interest in muscular dystrophy and the things we were doing to chance perceptions. Sainsbury's staff were incredible, and the McCollum's were as enthusiastic as ever. I met many of those in their team, and was amazed by the enthusiasm of so many people who were rallying around a local charity with a big heart.
With Gerry and Sainsbury's Staff ready to collect!
The Sainsbury's Team
Of course, as part of my fully fledged initiation as a Directioner, we found time to hunt out and oogle the GQ covers when we had a lull in people. I also found time to dance, and laugh at my niece trying to make me laugh while I was talking. All in her days work.
OM-GQ! It's HARRY!!!
I also met a wonderful young girl who restored any faith I may have lost in humanity. Her first words to me were "are you really smart?" - something which imediately put a grin on my face. And when we talked about how I could be really silly, and how important it was for me to work hard at my exams, she was content having had her perfectly innocent questions answered. As I was preparing to leave, she came back to me with a necklace which she had bought for me - something which floored us all with shock. I have been wearing it with pride in the human race since - and to her I say thank you, never change!
I came home and went out to party that night - burning the candles at both ends and in the middle. None of us are guaranteed tomorrow, but we have right now. So rather than hold off, no matter how much pain your foot feels, it's important to love life. Yes, I may well have drank tea in a bar - but that's me. I am me, not the girl three doors down. I have SMA, not Duchenne - but they need support as much as I do.
Those of us with muscle disease are fighting flames in a tropical storm - something Northern Ireland has seen plenty of these past few weeks. We burn brightly. Even though today has been drowsy, my flame stays lit with the arrival of my Muscular Dystrophy Campaign wristbands. It gives me cause to fight through the Spatone and Pineapple cocktails and endless cups of tea that have made today what it was. Tomorrow is another day, and who knows - maybe one of those £1 coins we got on Saturday could cure Duchenne tomorrow.
Heartbeat by The Fray speaks of a number of things to me, depending what state of mind I'm in. Today, it speaks of the Flame inside everyone - and how you should use it to educate and make the world and your universe a better place.
Please visit www.spiritofchris.com for more information on The Christopher McCollum Fund and their partnership with Sainsbury's Bangor.
Living with the number one genetic killer of children under two is an interesting, yet thrilling ride that can take a sudden dip during any turn. People are often petrified at this prospect, and when they hear that Spinal Muscular Atrophy took my sister when she was 14 they tend to run 10 country miles.
The fact is that using a non-invasive ventilator, which is more commonly known as a life support machine, a feeding tube, a cough assist that is akin to a vacuum cleaner and any number of medications when my lungs to succumb to another infection does not change one simple fact:
Life is a ride we all take, in sickness and health, in disability and ability. It goes one way - closer to heaven with every second - every breath. All muscle disease does is make you aware of that with every movement.
I'm on top of that proverbial skyscraper - acutely aware that whether you are 101 years, months, weeks or even seconds old, life has to begin and end. It is merely taking the chance to live life while you have it that makes the difference between a self-imposed destruction, or happiness.
Here, I will be telling you about my life as a music lover born with no ears, the latest saga on the reality music TV programme I'm watching, or how life is from inside a hospital. I will also be blogging about disability, and how we all need to find the ability in ourselves - disabled or not.
Welcome to this little virtual piece of Hollywood. It won't always be glamorous, and it certainly will get crazy. But this is the story of how knowing that your rollercoster car called life might not go as far, gets you more happy time than you could imagine.
I will end most blogs with a video. This time, it's the turn of Angie Miller with her stunning version of Demi Lovato's Skyscraper.
