[10] Catch My Breath

-- 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.

Fight with us.

[1] Skyscraper.

-- Closer to the clouds up here --

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.