The things I do for science, rationalism and Tim!

Later this week I’ll be heading down to London to TAM. This is my wobble and I’m hoping that by writing about it it will relay some of the anxiety. Please bear with me as I trundle through my brain.

I first heard about TAM last year in the paper and thought it sounded amazing (no pun intended), then promptly forgot about it. Until someone retweeted it on twitter earlier this year. Almost I immediately I decided I wanted to go, but then my ever-so-practical side kicked in, as it always does. Can I go? How will I get there? Will I be able to cope? Those of you who know me will be aware I have Muscular Dystrophy, those who don’t – I do. I try to live as normal and independent life as possible, but I won’t lie – my life is hard, partly because I’m to stubborn to accept or ask for help. Still I have a pretty good life so I try not to whinge. But why should I miss out on something’s I really want to do just because I am disabled? I can’t do some things so I should do those I can while I can.

However, I do struggle with things other people don’t even think about. In some ways I’m a little like a blind person, in places and situations I’m familiar with I’m fine, in new and unusual situations I find it hard. Things like opening doors or standing up from chairs. How to balance, where to put my feet, will my back seize up if I sit/stand/walk too much, what if I fall down? These are the stupid things I worry about.

I’ve tried to be organized, I’ve contacted the hotel, the organizers, planned my journey. I can’t do much more. I’m sure everyone will be lovely (that’s what I keep being told) and I need to get some self-belief and if necessary, ask for help, even though that doesn’t help my self-esteem! I think my dad hasn’t helped, I know he only cares but he keeps coming across as ‘you can’t do this”. I don’t see why not, I’m 28, I’m a grown-up and I know what I can and can’t do. FFS, it’s a weekend in London, not backpacking around Peru! I think part of my negativity is that I’ve been let down so much in the past that I talk myself out of things so I won’t be disappointed.

So, I’m going. I’m meeting up with one of my oldest friends on Friday night, I’m going to have a great time, see some amazing speakers, learn interesting things, hopefully meet some new people (and put faces/bodies to twitter names), and maybe suck it up and take a note fro A Streetcar Named Desire ad rely on the ‘kindness of strangers’. And as my dad says ‘the things you worry about most in life never happen’.

Wonder Years

It's been a long time since I've blogged so I'm going to try to do better. Starting now.

I think it's my age but all my friends and people I work with are having children. Or at least are getting married and I'm sure kids are not far behind. Now I'm not going to have children but hearing them all talk about them has made me realise I do have an ethos on raising children. And it stems from my own childhood.

I know many people say how differently they would raise their own kids from how they were raised. In some ways I would (hypothetically) do things differently, the fights I had with my parents about hair dying or piercings were stupid and unnecessary, they should have conceded some of the small stuff, but looking back I had a pretty good childhood. Actually it was great, especially if you don't look at the bullying, torment and hospital visits. But that's another story.

There is a guy at work who is married with two kids under the age of 5. Nice bloke, nice wife, nice kids, nice family. But what bugs me most of all is the money he spends on those kids. I'm not talking hundreds on designer clothes or toys, but his philosophy seems to be that kids can only have fun if you spend money. An example, if I may. A few weeks ago he had the kids whilst his wife was at work, he asked for suggestions for things to do with them. Being a nice weekend I suggested a kick around in the park and perhaps a picnic. He shot me down and ended up taking them to some carnival where he spent £3.50 each on balloons, and money here and there on sweets, ice cream, games etc. Now I'm not saying that the kids didn't have a fun day but after £30 they are not going to remember it any more than a free day in the park. And that's not all, they can't take the kids out without spending money on something - entrance fees, souveniers, drinks, food, vending machines.

It got me thinking about when I was much younger. We didn't have a lot of money when I was growing up in the 80's and early 90's but I never really felt I was missing out, in fact the opposite. I was lucky, we were always busy and my sisters and I were always making something or doing something. And mostly for free or very cheap.

Every weekend we went for a walk in the countryside, and yes, we were sometimes bored, but our parents made it fun. When the rhodedendrons dropped we would collect them on sticks, we learnt the names of the trees and flowers. Our parents rewarded us with little things, a go on the swings, occasionally an ice cream, or even a lemonade in a pub garden. Because these were treats we didn't expect them and it made an outing extra special.

But we had just as much fun at home. When I think back at the good times I don't think of the toys or games, I remember cooking with my mum in the kitchen, making jam tarts and cakes, licking the spoon and helping to decorate. I learnt to bake at my mum's apron strings. But the most fun my sisters and I had was with a cardboard box. Sometimes things like a new TV came in giant cardboard boxes and we would spend days entertained by this box. We'd sit in it and push each other around, make den's or God knows what else. When it fell apart we'd draw on it or cut it up. So much fun!

We were all creative, playing in washing baskets, playing schools or supermarkets when my mum would give us packets and tins from her kitchen we could use with our till. We'd make 'rose perfume' from fallen rose petals or my nana would teach us to sew or knit. During the long summer holidays we would keep scrap books or diaries, sticking in pressed flowers or ticket stubs and even, on one rainy afternoon, cutting up and pasting an Argos catalogue!

It saddens me that so many kids now are not going to have memories like this. Where riding bikes, a trip to the library or pond dipping in the woods was a good afternoon. When these kids grow up they aren't going to remember what computer game they played, how many trips to McDonalds they had or how much money was spent. So, what are they going to remember fondly when they look back?

Snowed Out

In case you've been living under a duvet recently you may have noticed it's been snowing. For most people it's a joy, with a side of minor inconvenience. Schools shut, work cancelled, a great excuse for reliving your childhood then retreating back home for hot chocolate and warming up by the fire.

For me it's a nightmare. I hate snow. Sure it's pretty and levelling but it causes me no end of angst. I have been 'snowed out' since Tuesday. I can't walk on the snow, or I can but I need help. And don't even get me started on ice. I have two problems. If I fall I can't get up without help and if I slip and break a leg I won't ever walk again. Now that's life changing snow.

I live on my own. I obviously like my independance but when it snows I either stay home or go to stay at my childhood home with my parents. Staying home is not a long term option. For a start after about 24 hours I'd go stir crazy, and secondly, I work full time. I have targets and deadlines and responsibilities so I can't just sit at home and ride out an extended holiday. Working from home is not an option either.

The physically getting to work doesn't bother me too much. I have a four-wheel drive jeep (albeit a small one) and it handles the snow and ice like a dream. My problem is getting from the house to the car. Hence, my parents. At their house I can park close to the door and they can help me and ensure I don't spectacularly fall. Hence, I have made it to the office every day this week.

I just hate having to do this. Practically it's the best solution but it's very depressing having to be treated like a child again and not being able to cope. And it's the little things that push me over the edge: not being able to watch what I want on TV, not having my books, DVD's etc. Using my own bathroom, making dinner in my own kitchen, having to get up at stupid-o'clock to make the commute to work.

And at nearly 28 it's not a good idea to live with your parents!

So it does rather annoy me when people call in snow to work. If I can make it in, so can you.

Rant over and wish for summer ;-)

2009: A Summary

So, it appears another year has come and gone and I've been trying to figure out where on the bell curve it falls. I can only seem to remember the bad things but that may be because November took a nosedive. So I thought I'd summarise...

Bad stuff:

• I was almost made redundant
• The year started badly
• I still spend far too much time on my own
• I am struggling more than ever
• I am still way too unhappy most of the time
• I don't appreciate my life

Good stuff:

• I went to see Jodi Picoult on her book tour and met her (and had a fantastic evening with my oldest friend).
• I saw Tim Minchin's "Ready for this?" and met him. Fabulous night and lovely guy.
• I went to Sweden and Denmark.
• I got promoted instead of redundant.
• I discovered the wonderful world of Twitter and met loads of likeminded people.
• I signed up for a writing class and have started writing.
• I discovered Skeptics, new comedians and new ideas.
• I am the proud new owner of an iPhone.
• I've had some great family get togethers.
• I got another tattoo.
• Lots of far worse things could have happened.

I'm sure I can and will add to this. On paper my year could have been worse. Roll on 2010!!!

My Athiest Christmas

Somewhere along the line I lost the Christmas magic that I had when I was young. I no longer have the excitement that makes this time of year special. Maybe this is how lots of people feel at this time of year. Maybe not. Maybe I'm just strange.

Don’t get me wrong, I’m not a scrooge, but there are things about Christmas that annoy me. How Christmas seems to begin around mid-September and drags on and on, so that by the time December rolls around it’s like ‘has Christmas still not happened yet?’. What’s wrong with holding off the Christmas decorations until at least the end of November? There is only so many times you can hear Jingle Bells or I Wish It Could Be Christmas Everyday before you want to kill somebody. Not exactly in the Christmas spirit really.

And 'works' Christmas parties are a nightmare. I have no objection to going for drinks or a meal with colleagues per se, but I don’t get the ‘but it’s Christmas’ mentality to get completely hammered and act like a wanker. I don’t see why I *have* to drink heavily with people I may or may not like just because it’s Christmas. And everything is three times as expensive (who can afford a £25 meal two weeks before Christmas?). Plus, go out to any town or city the last Friday before Christmas and it's like the monkeys have been let loose with a bottle of Vodka. Mad.

But enough ranting. There are things I do like about this time of year. My family’s Christmases tend to be big, usually fifteen people plus and loud and mad. Christmas to me usually means being packed into a car, literally, unable to move for bags and presents. And with some kind of desert on my lap. Then it means camping out on relatives floors and waking up in a room with two or three other people. Fabulous idea for about 20 minutes until I remember why last Christmas I swore I’d never do it again.

Then there's the cooking. My mum has always been a big baker and every year we spend days baking cakes, gingerbread, mince pies, quiches, anything you can think of! We always have more food than we know what to do with and at any point over the christmas period someone will be in the kitchen grazing on turkey or breadsticks or cheese or gerkins.

I quite like Christmas songs, the traditional ones and carols. Maybe that's where some of the magic was lost to me. When I was young we used to always go to the candlelight carols service at church and it was beautiful and made me feel Christmassy. I don't tend to go to church now, mainly because I developed my own beliefs a long time ago, but I would go to a carol service if I had the chance. But I almost feel ashamed to say it, to me, Christmas isn't about religion. It's about family, gifts, laughter, cold walks, hot meals and fun.

So now Christmas is only a few days away and I don't feel festive at all. I am stressing over the presents yet to be wrapped, packing not done, fridge to be cleaned and work to be completed. Still I'm hoping that come Christmas Eve when I get out of work and head 'home' to my parents it will start to happen. By the time we all gather and the children turn up it will be loud and rumbuncous and 14 conversations will all be going at once, it'll be Christmas once again.

Happy Holidays
S x.

Some people have it worse than me.

So i was listening to Tim Minchin the other day and for some reason “Some people have it worse than I” really resonated with me. Apart from being funny and clever it made me consider my life and has inspired me to try to put into words various thoughts i have. (All quotes Copyright of Tim Minchin).

Please forgive me if this is self-indulgent diatribe.

My life is pretty shit
But I know I shouldn't whinge about it
I could be a Palestinian
Driving buses on the Gaza strip
Yeah how bad can it be?
Some people have it worse than me
I could be a child prostitute
Or Gary Glitter's family
I have no right to cry
Some people have it worse than I
I could be a thalidomide kid
With something in my eye

This section is the part that has stirred numerous feelings I have about my life. I suppose I should start by saying I have FSH Muscular Dystrophy. Even saying that is hard for me because I don’t want to be defined by something I have no control over. But I am defined by it because it’s obvious (and you met me recently, you probably don’t remember but you would if you saw me again). People see the muscle wasting and the lack of facial expression and immediately judge me as mentally ‘not there’. People are surprised to find I have a career, a car, a mortgage, interests and passions. And why not? I see myself as a ‘normal’ person trapped inside a body I can’t control and I’m still trying to find my peace with it.

My life, on a grand scale, is pretty good. I have friends, a great family, money, freedom, I’m not completely unfortunate looking, I am grateful I had a great education and went to Uni. I have travelled the world and seen more things than many people have. People do have it a lot worse than me. I’m a Samaritan so I should know. I’m not homeless or abused or starving. I’m not genuinely afraid for my life or persecuted for my beliefs.

And yet I spend too much time not happy, and I feel guilty for that. I don’t want or expect pity but I am seen as the ‘thalidomide kid with something in my eye’. But that is society’s fault. I know everyone wants a ‘happy healthy baby’ but what if you don’t get that? Does that automatically make you a failure as a person? I’ve always had to fight harder and set myself higher standards to compete in the ‘normal’ world. But what is my alternative? I fight, and I am strong.

That still didn’t stop people encouraging my parents to try to ‘cure’ me. Osteopaths, (how can head massage and manipulation fix mutated DNA?), or the Evangelical faith healer. That was a truly terrifying experience for a seven year old, renouncing Satan and asking Jesus to forgive me in a room of ‘miracles’ of people being healed. It’s not my parent’s fault; they were just trying to do their best. Hence, my disbelief in alternative medicine and blind faith in Jesus and God. God didn’t make me this way, skipping sequences in pre-DNA did. I’m mutated in a bad way; I’m the mirror of Tony the Fish. But I digress.

Whenever I have a bad day I try to concentrate on the positive. The days I don’t know whether I can face ‘the horror of another fucking day’, whether by pain or circumstance, I do. Feeling sorry for myself is not going to help so I might as well do something productive, and if I feel the same at the end of the day at least I have done something. And I just find the appropriate Tim Minchin song and that makes me smile, how can you not listen to ‘Prejudice’ and not smile?

So this has turned into introspective ramblings, and I’m sorry for that.

So my life isn’t so bad, if only I can get people to realise that, and I’ll keep trying not to hate myself. I’ve never really put any of these feelings into words before and it’s interesting to see what I have ended up with.

They say the biggest mistake is giving up. That true strength exists in the will to keep trying. Keep hoping things get better. Keep reminding yourself of all you have accomplished. Keep everything in perspective. Keep up the fight. Because at the end of the day, that’s what you’re left with. The knowledge that you did your best, that you’ll wake up tomorrow and try again.

Ink

So for the longest time I wanted a tattoo. I knew I wanted a daisy chain around my ankle but I never 'got around' to doing it. I was full of excuses; I didn't know where to go, I had no one to go with etc. And I knew my parents would be unhappy, even though I'm a grown up!

Then one day I found somewhere so I thought "what the hell, I'll pop in". So I did and it was just perfect. I found a design that was exactly what I was looking for and the people were so nice. Plus, you hear these stories of seedy, dark, backstreet places - this was just like a hair or nail salon! Perfect.

So I had it done and it didn't hurt at all, just scratching. I swore that was all I wanted, but two years (to the day, weird!) I found myself back there. This time, stars on my wrist, an idea which just came to me and covers up the marks of my past (but that's another story).

Now I want more, but I'm trying to resist. And I must stop watching Miami Ink cos it's giving me ideas!!!

But I think tattoo's are amazing and an severely underrated art form. For a start the artist must be phenomenal, you can't just start again, and the range of skill is incredible. Your work is permanent, forever, it's not so easy to change later. But the thing I admire most is the meaning behind them. People rarely get tattoo's purely because they like them or like a design. They all have an individual and personal meaning; freedom, remembrance, memoriam, strength, honesty, survival. All creative and powerful.

And so I wrote this poem (please bare with me as I don't tend to write poetry and it needs work)...

Sterile as an operating theatre
Artists brushes, instruments of pain
Black leather chairs and wooden chairs
Beauty salon of contrast

Grotesque artwork made beautiful by talent
Flesh as a permanent canvas
Ink black, vibrant colours
Bringing together depth and perception

Buzzing, the forms take life
Silent pain scratching at memories
Tribal, Celtic, Oriental, Floral
Symbols silently speaking a thousand words

Individual, decorative insignias of strength
Freedom, a snapshot of time
A journal on skin
Walking away with an indelible mark of life