Rewinding a few weeks, I think I mentioned in my last blog about how I still didn't have my splints that I was cast for LAST AUGUST? Well, now I do, but I may as well not have them. They are still completely wrong, chewing my feet to bits in a matter of seconds, therefore understandably, I don't wear them all too often. For those of you that are new to my blog and/or the challenging and charming world of disability, 'splints' are basically a way of keeping my feet straight by encasing them in hard plastic - I call them my muscles on the outside. I would ideally like to keep my feet 'shoe-shaped' for as long as possible, and so I try to wear my splints for as long as I can tolerate them in the hope that I can maintain their current position. If I'm not mistaken, the main reason that they turn around is because the muscles on one side of my foot are just a tiny bit stronger than those on the other side, thus creating a kind of 'wind-swept' effect. Now all we have to do is summon up the courage to book yet another appointment at orthotics to see if they can maybe, you know, make me some splints that fit? Yeah, it does help occasionally....
Small, but not so perfectly formed...
I'll never get the bag to match!
On a much less painful note, since September, I have been involved in the Arts Award project at the New Vic Theatre. I completed the bronze award back in the summer term last year, and am now, already, nearing the end of the silver award. This level consists of two units, one of which being a more personal project where you can chose any of the arts that you enjoy and look at ways of honing and developing your skill - I'll talk more about this in just a moment. Unit 2 is something called 'Arts Leadership', which involves identifying an area within the theatre that interests you, and then taking on that role whilst putting on a play. My particular 'job' is very much based on social media and publicity, and so I thought I would take this opportunity to politely ask if you would be so kind as to check out the blog for our performance (http://tcscgfanclub.blogspot.co.uk/) and give us a follow on twitter (@TCSCG_FanClub). It's interesting to be on the other side of the curtain, and see what goes into putting on a professional performance like this.
Oh yes, we have our priorities right!
New Vic Arts Award Team - 2014/15
For the main part of Unit 1, you had to set a target for yourself that could be achieved by the end of the course, so I thought to myself, why not write an album? I've been writing songs for over a year now, and feel that to have some sort of record of them would be a great goal to reach. Having said this, for the past few weeks I have been focusing much more on my composition for GCSE Music. For my options at school, I definitely wanted to choose subjects that I could complete as independently as possible, for instance, I may have struggled slightly handling a coping saw if I had taken design - not impossible though I guess!
Our main aim throughout my school journey has been to give me as much independence, as possible, and this mission still continues as I pass the half-way point of year 10. I've always had one-to-one support from a teaching assistant at school as, when I was very young, I was pretty much permanently attached to my suction unit. Over time, I have found different and ultimately better ways of managing my chest infections and secretions, and so am looking to start leaving my suction unit somewhere within reach instead of carrying it round on the back of my chair like a pack horse - not a good look. I'm also trying find ways of being more independent both in class and around school, basically practising for the big wide world, but in the mean time - with the greatest respect - not having and adult constantly attached to my body-work has already improved my social situation.
Overnight, you could maybe say that my need for care slightly increases due to the fact that, when lying in bed, I have no arm supports and no power-chair to assist me. I instead rely on the help of my Mum with things like moving my arms/legs, lifting my head, and other little - but essential - jobs like that. When I'm in the throes of a chest infection, we've discovered that to set the alarm for 02:00am and complete a cycle of my various machines is an effective way of keeping my chest clear. As you probably know, the morning is the worst time of day if you have a cold, and it makes sense really because you've just let the secretions pool and settle in your lungs for anything up to twelve hours. My coccyx was also a big issue before my injection in December, maybe needing to be moved up to fifteen times a night to try and minimise the agony. To help Mum out, we've had what we call 'night-sitters' coming in for years now, and just recently, the number of nights that we get per week has been increased, meaning that a good night's sleep can now - more regularly - be had by all.
The last week in January is always a pretty busy one for the Griffiths household, as we have not one, but two birthdays in the family. Candice's comes first, and then mine follows just three days later, therefore we decided that the Trafford Centre would be the perfect place to celebrate - what could be more perfect than a bit of retail therapy?! I met up with one of my SMA friends whilst there, and it's great to be able to have a chat with someone who has had pretty much the exact same experiences as you. I'm not saying that we sit and mope in solidarity about how terribly sad and depressing our lives are (which they're certainly not), but it's nice to have someone to compare stories with who just gets it. Social Media is another great way to keep in touch with my SMA friends, and a group has now been set up by one of the girls for teenagers with SMA to talk to each other, but also ask any questions that we might have.
SMA Sisters;xoxox
We did have quite the culture-vulture weekend really, what with a trip to Buxton to see the Russian Ice Stars perform 'Snow White' on Sunday. With it being half-term, there was quite a number of young children sat around us, each of them fascinated by the magic that is my electric chair, but I suppose at least I provided a bit of before-show and interval entertainment! I really don't mind their cute little stares, but it's so much easier once you engage in conversation with them. We started to tell them about how I once skated with Torvill and Dean, and I immediately saw their parents' faces relax - there certainly is no harm in being interested.
Video of me skating with Torvill and Dean: https://www.youtube.com/watch?v=k4j7YxBfA98
In hind sight, this choice of jeans probably wasn't the best
for a trip to an ice rink in February....
Going back to books for a second, you may have spotted a guy called Shane Burcaw in the press lately? If not, he is a young person with SMA (Spinal Muscular Atrophy - my condition) from the USA who has recently written and published a book about his life called 'Laughing At My Nightmare'. I couldn't believe how similar some of his stories and points of view were to mine, and his attitude towards life is exactly what I intend to always have. Again, definitely worth a read.
I think I also mentioned in my last blog that my ultimate dream is to go to university in California, and following that, we sent a little email to the charity over there that deals with SMA families (Cure SMA) to see if they knew anyone who was going through/had been through the system already. We got a reply almost immediately, and the positive response has made my goal seem like even more of a reality. It will be a long, hard journey, but I'm ready to take you with me all the way.
I think that pretty much sums up the beginning of 2015 for me and hopefully I will be able to give you an update on some of my upcoming adventures in the very near future.
Write soon,
Tilly,xox
P.S - Check out the new name of my blog!
#DreamsWheelsAndKillerHeels
