[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.