[1] Ignorance Won't Fight the Fires

Blog Number One always tends to leave a blank space for the opening line. It's like writing a book; the first line is never enough. I mean, who can compete with Austen's:
"It' is a knowledge widely known that every man must be in want of a good wife"
Or maybe that's the other way around... I haven't got a copy of Pride and Predjuice on me at the minute...

So, welcome to my Blog. Not my first Blog; by far my first. Still, this feels all fresh and new. Ever wished you could just stop life, erase the mistakes from your past, get rid of the bad memories, bad decisions? That's almost what it's like when I'm sat here writing a brand new entry of a brand new Blog. It reminds me of the smell of a newborn puppy that's washed away eventually. It's a feeling you don't really forget.

This Blog, the purpose of it I guess, is to tell you all what it's like to live with Spinal Muscular Atrophy in a little village in the middle of nowhere. There's a lot to tell you in eighteen years of life. I've got a whole legacy behind me already, and now I'm starting to make another one to look back on when I'm thirty. Without my wheels, I'm a statue, stuck in one position until somebody comes to move me. With them, I soar above the clouds with ability that a lot of people take for granted; to look at CD's on the rack, to browse through a book store. Hearing aids give me the gift of music, wheels give me the gift of independance; one of the things none of us have, is inclusion. I can soar above the clouds all I want, but I can't be whole without someone to converse with when the going gets tough, or someone to go out with for a laugh. This Blog, hopefully, will change the mind of those who feel that just because I have a set of wheels, they'll have to ask my Mum if I take sugar in my tea or if I need a straw.

Today's Sunday. I'm not religious, but I believe in something. I can't say I know what I believe in. A friend passed away a week ago today, and when I heard I found myself praying to her. Same when my Uncle Pat went, and when my Auntie Mary went too; I prayed to them. I have a personal belief in people I knew from life, flying above the clouds and stars, singing a whole new song from above; they look after us all in a way they couldn't before. I believe in a lot of things; you'll just have to stay tuned in so you can find them out!

Basically, I'm going to wrap every entry around a line from a song. Today, we've got a line from Josiah Leming's Her:
"Ignorance won't fight the fires"
Think about that line. Ignorance is a word that a lot of people misuse. Here though, I think it's used perfectly. By treating things such as genetic disorders, uncurable but rare cancers or drug use with ignorance, we don't help them. My second cousin has Brain Stem Glioma; it's a Cancer which is very rare, and survival is nil. There is a clinic in Houston that claims to be able to treat it, but just because it's a rare cancer, people don't give it the same attention as they do for other Cancers such as Breast or Bowel. I don't understand that. Those of you living in the UK will have heard of the new Human Fertilization and Embriology (HFE) Bill. It allows scientists to produce hybrid embrios (half human, half animal) to extract stem cells from for research. I praised God for letting that bill go through. I'm sure some, if not lots of you are against this. Have you ever heard of ALS, Steven Hawking, Lorenzo's Oil, Muscular Dystrophy... The list goes on, and by using these stem cells we can cure them all. In fact, one Motor Neuron Disease has a cure, but it can't be used because no human evidence is there - HFE quickens research for cures, and treatments, to be found quicker. Surely it's not immoral to save lives using these cells? Surely, this acts for the better good of humanity. Surely, this helps us keep the geniouses of the world days and years longer than we can now. 50% of children diagnosed with Spinal Muscular Atrophy before the age of two will die before their second birthday. One stem cell can, and will, change all of that. Why ignore it, when we can support it? We now almost have a blood test for diagnosing Downs Syndrome during pregnancy while posing no threat to the unborn child; surely if we can do that, we can get some eyes opened to see what we really need in this word; lives saved, children's smiling, but most of all we need love.

Clay Aiken was speaking at a gala a few years back, and he talked about the most simple form of ignorance. In his speach he said:
"When you walk down the street and you see a wheelchair user; do you see the wheelchair, or the person inside it?"
That, in everybody's book, is ignorance. You can deny it if you want, but you know you'd be lying if you did. Ignorance is bliss, if you want to miss out on some of the best people and talents in the world. I have had the pleasure of meeting a Peer in the House of Lords; she has Limb Guirdle Muscular Dystrophy and uses a walker. Bethoven was deaf as two short planks; I don't know how many years on it is now, but we still know his name and celebrate his music. Eva Cassidy had Cancer. Many celebrities were on the beach in Indonesia when the Tsunami struck. We ignore science, we ignore the truth, and most of all we ignore people. Life shouldn't be lived by the saying "ignorance is bliss" - if it is for you, then you're missing out on some marvellous times.

If I decided ignorance was bliss, I'd be missing out on my almost three year old nephew calling David Cook, Clay Aiken and vice-versa. I'd be missing out on him plastering vaseline all over himself and me thinking he'd given himself a shower. I would miss out on some fantastic concerts with my neice completely star-struck when she see's Same Difference come out from below the covers of the beds on stage to sing "Wake Me Up". I'd miss playing endless games through the summer with my eldest nephew, and I'd miss my other nephews French accent. Point is, I'd miss the little things in life, like Hawthorne loving with all his heart in the 1800's, or the way holding a new book in my hand is like holding a million secrets, burning holes through the pages before I read them. Ignorance is bliss, but hurting lets you know that you're alive.

T.B x