That’s the reality. Three years ago I started TPN, it saved my life, and completely revolutionised it.
I wrote extensively on this topic 2 years ago here: https://rowrowyourboat.wordpress.com/2013/06/01/365-little-days-later-why-pinnt-means-so-much-to-me/
Now I am back, this time to talk about fundraising for them. They’ve stuck by me as every challenge has cropped up, have introduced me to some fantastic friends and some random people who I love dearly. I have three years of additional life to celebrate, and I have definitely done some living in those years.
On Sunday I take on the Bupa Westminster Mile- don’t worry I haven’t suddenly learnt to walk, I took up wheelchair racing as part of my cross-training, so I thought why not give it a go?! It’s time to repay the favour, to ensure they can continue their fabulous work, plus I get to race (can take the rower off the water, but can’t take the racing mentality away!!).
I only started training for wheelchair racing in February and much has been punctuated by niggles and meetings getting in the way, so I’ve not had many sessions, and seem to have the worrying knack of tipping my chair, including in my first ever race!!
I’ve now done 2 competitions and 7 events across those, I’m not fast, but I’m having fun- although I have collected 5 medals and a third place out of those.
I hope anyone reading this will take time to read my fundraising page http://www.virginmoneygiving.com/claireconnon where I wax lyrical about the work PINNT do, and consider sharing and supporting this fantastic charity and my crazy endeavour!!
—–Please note MY autism, this is not reflective or representative or any other person with autism on the spectrum, this is my story and even then doesn’t do the complexities any justice in the slightest.——
Yesterday was World Autism Awareness Day. Yes, yet another one of those darned awareness days that come up on your timeline and you think what does it matter to me?
Well it doesn’t, not really, but it matters to some people. I’ve spoken about my opinions of awareness days previously and this one seemed to go off very quietly compared to some of the awareness events I’ve seen previously.
As for me, I’m aware of autism, 24/7, 365(6) days a year. Why? Well if you don’t know you’ve clearly never spent any time with me in person, and if you’ve not had that dubious pleasure, then I was diagnosed with an autistic spectrum disorder a few years ago.
It had been obvious to myself since I was very young that I was different, I didn’t like what the other kids were into, I was too weird, even for the weird kids. I didn’t want to be in groups, and preferred writing and studying to painting, had an obsession with reading and various other ‘normal’ things that combined with some not so ordinary things weren’t picked up on until I was in my late 20’s.
When I was at school, many still believed autism, particularly Asperger’s (as it was at the time) was a male only disorder; they had just about mastered checking for dyslexia but anything more than that was beyond them.
As a girl, I presented typically, but here is the crucial difference, I presented typically for a female- unfortunately this is still a very much unresearched area, but there appears to be key differences. Even my Special Education Needs trained mother missed the diagnosis. Looking back she says she can see it clearly now even from when I was a tiny baby who wouldn’t be left with anyone other than my parents, but even then didn’t really want to be with them. It was much more complex than that, but hopefully you get the drift.
I never hugged on a regular basis until I went to uni at 18. I had never settled at school, I loved getting an education, but had very little interest in my peers. Uni was a change in so many ways. The perks of going to Cambridge are numerous, but one is that research has shown it to have a higher than average percentage of people with ASD, which is hardly surprising considering what you need to achieve to get in there!! I was finally in a place where I could be myself, a very strange experience and hugely overwhelming, those first few days of each new year were particularly hard as you had to get used to change all over again.
That’s all in the past though, the point of this is what it means to me to be autistic day to day. Well I don’t know. I’m not autistic day to day, I’m me every day. Autism is just the way my brain is programmed, and therefore it’s all I’ve ever known. It’s impossible to know if something is a Claire-ism, a quirk like any neurotypical person has, or because I’m autistic. Day to day I’m used to how things are. My head is like a constantly whirring motor seeing all the little things you miss, hearing the conversation you’re meant to, plus those all around you, hearing every noise (I had to ban cat scarer devices), all the idiosyncrasies you don’t register, ever seen Monk? Well my brain is like that all the time, just with less germ phobia!! It’s exhausting, spotting things that aren’t done correctly, and by correctly, I mean in the manner which befits my brains working. Ever had an argument with a 29 year old about putting the wrong sock on first- yes it does matter. Maybe not to you, but in the rules of my world it does.
For me those rules aren’t optional. People talk about it like it’s an anxiety disorder where something horrendous will happen if things don’t occur in a particular order, but that’s not the case, the rules are put in place by my brain and are so that things sit neat and ordered in my head, they stop some of the chaos waving it’s arms so violently around, but if they are broken, although I may have a melt-down, I know there’s nothing going to go wrong because of it is. A break from the never ending chaos that goes on in there would be strange and probably unsettling, after all I hate change!!
The only time I get a calm in my midst is when I’m out on the river, I don’t know what it is about rowing as such, but the escape I get whilst I’m rowing is fantastic. Maybe it’s because I can focus on the structure, there’s no space in my head for all the little “Me, Me, Me’s” waving their arms around, there’s space for technique and that’s about it.
Autism is one of my newest diagnoses, although along with my genetic illnesses, I’ve had to live with it the longest. It’s strange as although it has a massive impact on me generally, I find it is one of the least complex- it isn’t going to give me sudden breathing difficulties or sepsis, for me to live with. Maybe it’s because I’m so used to dealing with it, and dealing with it unaided. I’ve had no medical input in that respect since diagnosis, and of course no support throughout school. There are many things I’d like to improve in respect to my ASD, but there’s no funding or networks in place to deal with it, so I just make do. If people can’t handle my autism, then that’s their loss, because beneath the crazy exterior of my ASD, is just a crazy, human being like the rest of you. Oh and you miss out on the penguins, all the penguins.
It’s feeding tube awareness week, feeding tubes are something close to my heart, quite literally!! , but do we really need to raise awareness of them? Now I’m aware this post may be controversial and in an ideal world, no one would bat an eyelid when you flash your belly for food/meds/venting, but I’m not sure raising awareness is the right way to go about it.
Most people will never come across directly someone with a feeding tube, so I wonder if it’s not the most productive use of time and energy, as most will probably disregard any info they see about it. Plus what does raising awareness actually do? We don’t need people to be aware of them, we need to educate about the realities, and the positives to them. I personally believe that the best way to do this is to get people you know talking about it. Just posting on the Internet is a bit of an abstract way to do this. There’s nothing tangible seeing photos and messages on the Internet, it needs a much more grass roots approach.
I will talk freely about my nutrition problems when it comes up in conversations etc.. People can ask questions without any prejudice and they learn, they aren’t any more aware of them as such, but have a better understanding of artificial feeding, and hopefully when they come across it again, they treat it as completely normal.
I think part of my dislike of raising awareness is that I hate some of the terminology surrounding it. The *word* “tubie” is awful. I find it dehumanising, it reduces a person down to not even their medical condition, but down to a piece of plastic that’s keeping them alive. I particularly hate it used in the phrase “I love a tubie”, no you love a person being kept alive by a tube, there’s a big difference. I would be extremely upset, angry and offended if anyone said that about me. We are all people first and foremost, and sometimes that seems to get forgotten. Okay, I am kept alive by my tube, but I’m also kept alive by my inhalers, and you don’t see people going around saying “I love an asthmay”.
I may be being a hypocrit, as I have done publicity about life on TPN, but that was in the context of my life goals and aims, and was done in part to help PINNT, who are a fabulous charity that support people who are living on artificial nutrition. I guess it’s different though, as I wasn’t trying to raise awareness as such, just talking about my life, which happens to include TPN.
I don’t want to offend anyone, and I’ve seen some good proactive posts, but I just can’t support the general awareness campaign.