Safe Space

A couple of weeks ago, a new collaborative blog – Safe Space – was launched.

For the past year or so I’ve been unconvinced by the concept of “safe space” on the internet – a space where people can be free to share/be who and what they are completely without fear of abuse, hate, ridicule, triggers or trolling.  It seems like too big a goal both with how massive the internet and it’s trolling problems have become and the fact that for some people what is acceptable and OK can be what’s triggering, abusive or upsetting for others. Online (and in person) safe spaces are a worthwhile goal and one that is needed but the implementation seems problematic to me (especially when some communities like the disability one can’t even agree on what’s the correct language to use)

But I completely agree with the idea of Safe Space, the blog and I’m pleased that I’m going to be part of the team.

Jess, who founded the site wrote:

Here at Safe Space we understand that it’s hard as f**k being a girl. Periods, sexism and trying to put on eyeliner can be all in a days work.

Safe Space is a place where a group of women bring you posts about trying to hold their shit together. Talking honestly about mental health, feminism, sexuality and other important life stuff.

No judgment, no hate, because it’s already tough enough being a girl.

I’m going to be posting there every other Friday.  I had a fair amount of self doubt about doing so but the other writers are a  brilliant, friendly and supportive bunch who have been very encouraging and supporting. And I’m really enjoying the posts that they have shared.

The first week the site launched we each shared – What Makes Me, Me. That was a tough subject to write about as it needed more than a bio. But I think most of us found that.

Mine turned out to be a little different than planned. I had it written and then on my way home the night before I realised I needed to make a small tweak. Then when I logged online I saw an old school friend had died and ended up making more changes than I had planned.

What Makes Me, Me – Emma

My second post went live on the site yesterday morning. I spent most of the day out doing errands then having lunch with a friend in Oxford etc.  I came home to my twitter notifications full of really positive and encouraging feedback.

That post was about self worth and is called Because I’m Worth It.

 

Thank You

I’m quite well known for not noticing people waving to me when I’m out and about. Or not knowing who people are when they know me.

Part of that has to do with the fact I meet so many people through things like CAB. I’m usually the only person they deal with but depending on if I’m doing appointments of gateway (10 minute triage like interviews) I might see up to 4 people in one session.

The big thing in training for CAB is confidentiality. One of the points made about it is that due to that you shouldn’t acknowledge clients outside the bureau. That’s easier than it sounds because more than likely I don’t remember them or I think “hmm I know them from somewhere…” There are obviously the odd memorable person. Regulars and such like. But the number of people I’ve met and introduced myself to who’ve then gone “I know you helped me at CAB” and I’ve not known them is huge.

One day recently I was doing some jobs in town popping from place to place.

And in one of them someone saw me and said “oh! Good Morning.” As they walked past.

I replied “Morning” and continued what I was doing.

30 seconds later they reappeared in front of me to say

“You really helped me a long time ago but I don’t think I thanked you properly.”

All of a sudden the stuff in front of me didn’t have my attention any more. I’d been only half listening expecting the usual “bizarre and probably inappropriate comment to a wheelchair user” I so often get. Not that.

I said they were welcome and asked “at CAB?” They said yes and that it’d been “years and years ago”

I’m wracking my brain but I’m getting no where on who this might be so I asked how long “years and years ago” was

It turns out years and years ago was so long ago they had to think for a minute before they could answer. And so long ago I really can’t have been advising for long when I saw them.

We talked for a few more minutes. I had to admit I didn’t remember them. They said how much of a difference I’d made, how often I’d seen them and how grateful they were. They thanked me again and left.

I thanked them and left as well.

Because that made my day.

I can’t write any more about this. Because of confidentiality. But also because even with several days of thinking later I can’t remember them.

>I Come With Wheels

>I originally wrote this in September 2003.  I just found it and re-read it and wanted to share it here.  It has some relevance to the entry I am writing for the next disability blog carnival which will be posted within the next hour or so, most likely.  I consider this to be the first time I wrote a “disability essay” and wrote truly and honestly about my disabilities and what the had meant and did mean to me rather than writing something negative out in the “heat of the moment.”

I come with wheels

Crippled, disabled, spastic, stiffy, handicapped, weirdo, diplegic, cerebral palsy sufferer, abnormal, disabled, freak.

A whole host of different ways to describe who I am, what I am.  But none of them are important, not one of them matters to me.  To other people those labels are the only ones that matter.  My immediate family and my friends and I all realise exactly which label is the most important and of course, it’s the one word that’s never on the list, the label that’s always overlooked.

What is that label?  Simple.  It’s Emma.  Because that’s my name.  That’s who I am.

I am 21.  I am student at university studying for a degree in Business Studies.  I am from the UK and I have a younger brother and a younger sister.  I love partying, shopping, swimming and the Internet.  I get by with a little help from my friends, there’s a lot more of me then meets the eye.

It has taken me many, many years to realise that yes, some of those hurtful labels do apply, yes I am disabled, yes I do have spastic cerebral palsy diplegia, but it doesn’t matter.  Others may see me as an object of pity but I don’t need their pity and no matter what they think, I know that for a fact. 

Yes it did take years of hurt every time I realised just how different I was.  Crying and screaming at the injustice of it all.  When all I wanted was to do something so simple that meant nothing to the able-bodied people who surrounded me, but which meant the world to me.  I would try my best, give it my all, but I wouldn’t succeed.

I would feel like the world was mocking me:

“What gave you the right to think you could do that you poor little girl?  You’re a freak, Emma, an abnormal person in a chair with wheels.  You have cerebral palsy.  It’s all you are, all that will ever matter about you.”

That’s what the stares whispered to me, what failure represented.

Now though, 21 years since my birth 6 weeks prematurely, and 19 years since my parents received that devastating diagnosis I’ve mostly learnt to rise above all of that, to focus on the positive and never the negative.  To do what I want, to ignore the fear of failure.

Well, most of the time anyway…

I am disabled.  I am not a “normal” person.  I have a “problem”, I am “different”, however you want to put it, it all means the same to me, even if it doesn’t to you.  Days go by when I hardly give the fact that I have CP a single thought.

I have Cerebral Palsy.  So what?  The stuff other stuff I wrote about myself is so much more important then that.  The CP is just part of my life, the rest of it is my life.

That’s not to say there haven’t been times when life has been hard, but that’s true for anyone, CP or no CP.

Do me a favour?  Don’t ever refer to me as “suffering” from Cerebral Palsy.  To suffer is defined as to appear at a disadvantage, to feel pain or distress.  At times I am in a lot of pain and I can get very upset about stuff.  But it’s never the CP that I’m upset about its all the fighting that goes with it.  I probably appear to be at a disadvantage too, but there are advantages too and quite good ones at that.

Nor do I have an illness.  An illness is something that is wrong with you.  What I have is a lifelong disability and an it’s not something that is “wrong” – for me it is what is right.  I have never known life without CP and wouldn’t know what to do with myself if I woke up one day and was able-bodied. 

Just because I am different to you that does not mean you have the right to start questioning me (or worse whoever I am with) about every little aspect of my life and my disability.  I don’t mind talking about it but it’s not really any of your business.

When I went home for the Easter holiday in my first year at university I went on a trip to London with my Dad and brother.  We were sat on the train home, my brother was sat next to me and my Dad opposite next to an older lady who was travelling alone.  She had obviously seen us get on together and after we had been sat there for a while started asking my Dad about me.  “Is she your daughter?”  “What’s wrong with her?”  “How old is she?”  He answered all those questions with one or two word answers, probably not wanting to tell her but resigned to the fact that people want to know all the gory details.  Then she asked another question:

“Can she hear and speak?”

Dad just snapped “She’s at university” and turned away.  My mobile rang and I answered it laughing inwardly at the woman’s expression as I spent the rest of the journey chatting away to a friend.

As I said before, CP is simply a part of my life; I refuse to let it become my life.  There are some advantages of it though.

I enjoy using my wheelchair.  It’s good fun and I never have to look for a chair or stand for long periods of time.  If I’m feeling a bit active there’s always the opportunity to use my walker for a little bit. Then if I’m feeling very adventurous the thrill of taking a few steps unaided is one that has to be repeated time and time again to reach its full enjoyment potential.

Next there’s the times when you’re with some sort of disability “specialist” who has been told time and time again that words like “cripple” and “handicapped” are not politically correct and should not be used and you’re going “blah blah blah, yeah I’m a cripple.”  I did that yesterday when my physiotherapist was here and he didn’t know whether to laugh or be shocked at my attitude.  It’s very amusing and I recommend it.

The ability to say “yeah, look at me, this is who I am” was one that has taken me many years to develop and I’m not sure I’ve got it 100% of the time even now.  It’s an ability I am proud of though, one I am glad of even though sometimes it is still too much for me to manage.  It’s like Gloria Gaynor sang:

“Life’s not worth a damn till you can say:
I am what I am”

For many, many years should someone point out the fact I had CP I would be embarrassed, would want to run away and hide. 

The problem with that though was that I cannot run.  Nor should you ever run away from something – stand up to it (or sit up as straight as you can), face it down and learn from the experience.

Maybe I’m a hypocrite though, because once again its one of those things which is so easy to talk about and not too easy to actually do in real life.  Yes, I do it.  Yes it does take medication (anti-depressants) at the moment to allow me to do it, but that doesn’t really have anything to do with my disability.  I used to be able to do it without the anti-depressants and I will be off them and living a medication free life again one day soon.  As for now?  I just accept it, take one pill twice a day and get on with my life the rest of the time. 

I am disabled and it is true that a lot of disabled people do experience depression of such a severity that they would benefit from medical intervention (whether or not they actually admit they need it and therefore receive it or not) it is also more common for women to receive treatment for depression then it is for men to do so.  Plus I am also a university student and again that is a risk group for depression.  So really it isn’t really surprising that I am depressed, even if my parents and some friends seemed to be surprised by that development.

Many people within the medical profession just assume that simply because cerebral palsy is a lifelong medical condition, those who have it do not have to go through a period of acceptance of the fact that they are “different” and grieve for the abilities they feel they should have as someone with a degenerative condition such as Muscular Dystrophy, or who was disabled by an accident would.  That isn’t true, however, as any person with CP could tell you.

I think I must have been twelve or thirteen when I realised that this was it.  This was forever.  Before that I was convinced that one day I would simply rise up out of my wheelchair and walk away from it.  My punishment would be over and I would never again look at the pile of steel and the wheels that formed my cage.

One of my favourite magazines at that age was called “Just Seventeen.”  One week there was an article in it about this celebrity called Katie something or other, that I had never heard of and still don’t know what it was she was famous for.  It was talking about how she had scoliosis or some other severe medical problem when she was a teenager and could have ended up in a wheelchair.  She went on to say in the article that by doing a lot of physiotherapy she had been able to relearn how to walk and stop using whatever walking aid she had previously had to use.

The aim of these “It Happened To Me” type articles always was to help readers to realise that they are not alone, their idols had similar problems when they were younger and got through them.  They are a way of telling people not to give up hope – but for me the article about this Katie girl caused me weeks of anguish and I almost gave up hope for the future.

My brother is about three and a half years younger then me but because of my disability there have been a lot of things he did before I did and things that he can do which I may never experience.  He has had a job, I have had to focus solely on my studies and so have not.  He can drive; I had lessons but had to give it up.  He has a girlfriend; my experience with the opposite sex is limited to a few kisses and some harmless flirting.

The day all the stuff with the Just Seventeen article came to a head, my brother was allowed to go to our local shops by himself for the first time ever and I was crying and screaming because I was not allowed to go with him.  I really made a huge fuss because I thought that my mum was being grossly unfair but now I know she was doing it for own good.  Then my mum saw me reading the article (which I had cut out and read and re-read) and realised that I thought I was going to get better.

That must have broken her heart to have to sit down and explain that no, this was forever.  I wasn’t going to ever leave the hated wheelchair behind.  Surgery or physio or other treatments may improve my condition slightly, allow me to walk further, but I would never be normal – I would never walk without looking weird, I would never run or jump.  I think, aside from when we had a death in the family, this was the most upset I have ever seen her.  She held me while I sobbed and I spent most of the rest of the day crying.  Life as I knew it changed forever.

Everyone with a disability, particularly a chronic condition, will have had that kind of light bulb moment when they realised what their whole life would be like and had to begin the process of acceptance.  And it is a process.  I truly believe that when you are a child you don’t realise the looks are pity, the questions are rude, the physio sessions aren’t things everyone does – your mind waits until you are old enough to cope with the knowledge before it gives you that realisation and you have to begin the slow and painful process of acceptance – something that you will perhaps never fully reach and which you may spend your whole life striving for.  I’ve managed to accept everything pretty well know (I think) and most of the time I just think “so what?” when it comes to disability issues.  But it did take time.

Surprisingly enough, it wasn’t those events that triggered my depression and caused me to need medication.

For a disabled person to be successful and to be the master of their own destiny they must be a fighter; that is a must.  Support and services are provided for you but only if you are prepared to admit that you need them and then give your all in the fight to get what you both need and deserve.  At times you will feel like giving in, plenty of times I’ve felt like its all to much for me and broken down in tears at the prospect of another battle but I keep going; I have to.

Recently though, the fight got too much and I became severely depressed.  It wasn’t just my CP that was the problem.  In fact it’s more that I got messed about by loads of people about loads of different things and in my entire life there felt like there was no single thing I had any control over.

I have a fantastic friend, a friend who is able-bodied, surprisingly enough and who was there for me unfailingly throughout this and who helped me to get through this just as she has helped me through anything and everything that life has thrown at me in the two or so years we have known each other.  I do however have more than just that one friend and I think that my friends play a very important part in keeping me sane.  Whether it’s the friends who are disabled too (be it by CP or some other disability) who just completely and utterly understand what it is like to not be able to do something that you really, really would give anything to be able to.  Or the other friends who take me on a night out, buy me drinks all night and then decide they want to go to an inaccessible nightclub and so set out to sweet talk four bouncers into carrying me down a flight of stairs so I can go too because they know I would love it. 

My friends probably don’t know just how much they mean to me.  I’m as close, or possibly in some cases, closer to them as I am to my family.  At times when things have been tough and I’ve been alone I’ve found myself wanting my friends support more than that of my family.   Just like The Beatles I really do get by with a little help from my friends.

That doesn’t mean that I don’t really like my own company and that I’m not my own person.  I love my friends and my family but I love a good bit of me time too.  At the moment I’ve got the hall of residence where I live completely to myself.  As much as I love it when its full of people and there’s always someone to talk to, I’m loving it just as much at the moment when it’s completely empty.

I would be the first to admit that there are things that I can’t do for myself because of my CP.  However, don’t ever try to tell me that I won’t be able to do something.  I am the one with the CP, not you and I know what I can and can’t do better than you do.

When I first left school and went to college to do my A’ Level’s my entire class went on a team building exercise for a day and the lecturer in charge made the mistake of telling me I wouldn’t be able to join in with any of the activities.  That was the biggest mistake she ever made when she was teaching me and it wasn’t one she would repeat.  There were five activities planned for the day.  I took part in four of them and that woman never said I couldn’t do anything ever again.

I have a bit of a thing for collecting song lyrics and quotes that are meaningful to me or that I just enjoy which is why I have included a few in this essay.  As I write this I am listening to Christina Aguilera – Fighter because I think it really sums up the attitude that I have towards my disability:

After all you put me through
You’d think I’d despise you
But in the end I want to thank you
Because you made me that much stronger

I know I’m not fully there yet with my journey towards acceptance and I don’t expect to ever actually get over those occasional little niggles about my “problem”.  What I do know though, is that I’m a lot better now then I was that terrible day when I was 13 and knew this would be forever.

My name is Emma and I come with wheels.  They aren’t going to stop me and neither are you because living with cerebral palsy is not a problem no matter what other people may tell me.  It’s my life and I love it.

>Lose Sight of the Shore

>This is the 700th (public) post on this blog. The post below is a paraphrased version of part of what I wrote in a card to a good friend. As she received it yesterday I will share the thoughts here. It’s not word for word as I didn’t think to note them down before I sent it.

***

“Man cannot discover new oceans unless he has the courage to lose sight of the shore.” ~ Andre Gilde

The above quote came to mind a lot when we were at Rutland Water a few weeks ago for the regatta. Not the exact wording, I had to look that up. But the words “lose sight of the shore” and the meaning behind them. Rutland is a huge reservoir, it’s 26 miles around if I recall. It’s substantially bigger than my “home” reservoir, Farmoor. By the time we had sailed out to the race area we’d probably sailed the equivalent of to the opposite side of Farmoor if not further.

And there were one or two occasions when I would look out from the racing circuit and have to take a moment to work out exactly which way the shore we had launched from was and which of those beaches had my wheelchair. I’m used to one beach so hadn’t paid too much attention when they said about remembering where you launched from. You go all over the place racing, following a circuit and doing laps. So I got a little turned around.

It wasn’t scary it was just more than I had been accustomed to in terms of distance from things. And it wasn’t my usual place or set up. I had briefly “lost sight of the shore” in some ways. Literally a minute or two of thinking of it and I knew the answer. And I thought of that quote.

But that weekend and all the sailing involved made me push myself and expand my horizons a lot. I’ve never sailed for that amount of time in one go before. I’ve never been out in that much wind before. I’d never raced before. I’d never seen that many challengers all at once before. I’ve never gotten so wet or flew through the water so fast before. And I thought of that quote.

It was fun. It was hard work. It was tiring. It was scary. But most of all, it was worth it. And I thought of that quote.

I got so much out of it. I discovered my “new oceans” and I’m glad I did. But only because I had the courage to literally and figuratively “lose sight of the shore.”

That quote isn’t just apt for me for that one weekend however, I think it’s true of a lot of things I’ve done this year and things I plan to do with the remaining months, weeks and days of 2008.

***

EDIT, Tuesday: It is well worth reading the comments on this, I really feel like people commenting have understood and furthered what I wanted to say

>Race for Life 2008

>I want to try and get some more down on “paper” about the Race for Life and what it was like as an experience before it fades too much more from my memory. I’ll do a photo post in a few days – the best photos are on my mum’s camera and she can’t find the lead for it right now but hopefully she will soon.

It really was a wonderful experience and I am so glad I did it. But I do feel a little deflated now so I’m hoping to get it all down and share the full story now.

Race for Life is a women only event in aid of Cancer Research UK. It’s a 5KM “race” but there are no winners and losers and you can walk it, run it, go round on a scooter (saw someone doing that), be pushed in a wheelchair (saw several people doing that) or even wheel yourself round in a wheelchair (as I did). Hell, you probably could crawl round it or hop backwards on one foot but I didn’t see anyone doing either of those.

I wheeled my own wheelchair round the course (less one bit which was on grass which they had me go a different way – not 100% convinced I did the same distance but they said it was) and I did so in one hour and forty minutes. I’d known in advance that a lot of the paths it was on weren’t great for a wheelchair and had hoped to do it in less than two hours. Equally I know that if I’d been on proper paths without the odd loose bit of gravel and frequent huge stones sticking up I’d have been quicker. But I’m pleased with what I did.

At one point in time Sam pointed out to me that there was an actual honest to goodness proper path of the kind that wheelchairs love not far ahead of us and one we would be going on.  I screamed “a proper path!” and managed to get some speed up at that time.  Alas, it didn’t last too long and it was back to the loose gravel, dirt and stones much too soon.

When you sign up you get assigned a runner number (mine is 8856 and if you go to this website and select Race for Life Oxford from the drop down and enter it you can see the three photos of me their official photographer took, but I don’t think they are great). You also get sent a bright pink piece of paper which says “I run for life for…” and you can write who you are running for or why you are running. I used a big silver craft marker and decorated it a little and wrote “my Gran” on there. She had skin cancer, not a serious sort and had a brief course of radiotherapy and was fine for years after that. You wear it pinned on your back.

Race for Life is a hugely, hugely emotional day. I don’t know if the organisers realised that it would be when they were first mooting the idea around 10(?) years ago but it is. There were 2500 women taking part in the race I did and most wear those bright pink back signs I mentioned above. Going around the course and reading what others have written on them is very very eye opening but it’s also tough in a way because it gets to you emotionally (or at least it did to me). At least seven times I had to stop reading them, stop my train of thought and say to myself “no, you can’t start crying, you have to do this.”

Sam, my friend I was with, wrote “because I can, for those who can’t.” on her back sign

And we saw many other ones, friends, family, general, and people running for themselves – some of the ones that have stuck with me are:

“Because, six years on, I can.”

“For the surgeon who saved my life.”

“For my Grandad, he got the all clear on Friday.”

“For my daughter and all her friends on ward XX at the childrens hospital”

“For every woman who has found a lump.”

“For the future”

“For the world”

I think the one that has stuck with me the most needs more explaining. Some people just write on their signs, others decorate them and some put photos on them. I drew a few lines around mine but nothing major. Next year, glitter.

We saw one woman running with a photo on her sign and the words “in memory of my sister.” She had a little girl with her who can’t have been more than 11 if that. She had the same photo on her back and the words “in memory of my mum.”

We also saw some people who were very obviously on chemo and Sam said when her friend ran another race for life last year they saw people doing it who were actually on drips at that time receiving chemo as they walked.

*gulp*

At the end of the race there was a big fence thing with clothes pegs on it and a huge sign saying “I race for life for…” most people took their back signs off and stuck them on there. I didn’t look at that closely, I couldn’t. My brother did take some photos of it for me though and Sam went and added ours. She said that she couldn’t read it either, just went added ours and left.

[Photo shows the collection of back signs described above, you can’t read the writing on the individual signs as they are too small, just the big sign. There are some people sitting on the grass in the background and grass in front. The fence itself is made of plastic mesh stuff and is blue. One some of the signs you can see photos and things people have printed and stuck on them.]

Oh and although Race for Life is a women only event, we did see a guy running the course in pink wig and bra. So I guess it’s actually pretty inclusive.

At my request, Sam and I were allowed to start the race 20 minutes before the official start time. That was because there was no real way it would have been safe (or I would have felt safe) starting off in a crowd of 2500 people all going to the same place at the same time, especially given the fact that I knew the path wasn’t overly wheelchair friendly and when my Dad and I had gone and walked part of it previously (half of it, in fact) I’d had some where in the region of ten incidents of getting my wheels messed up on loose stones etc and slamming to a stop. The suggestion had been I would start last but thankfully they agreed I could start first.

That was a little embarrassing but also in a way really fun. We thought they would just give us instructions on where to go/what to do and we would go. They thought differently. First one of the stewards asked our names and I heard them repeat it over their headset “It’s Emma and Sam, Emma’s the one in the wheelchair.”

And then they told us. Adam Ball, one of the presenters from our local radio station, Fox FM, was there. And they were going to get him to announce that we were starting earlier and give us a count down. I don’t think it went out on the radio, just over the tannoy in the parks. I hope not at least. I can’t remember the exact words he used but I do remember being impressed and pleased because he didn’t say I use a wheelchair. He said we were starting early because I was determined to push (wheel?) myself around the course and it was liable to take me well over two hours. We got a huge count down from the crowd and we were off.

We covered the first KM in 20 minutes, and were just passed the sign that marked it when we heard the klaxon that marked everyone else starting. Every time we reached a KM sign we found the next bit of shade and stopped to drink water as I can’t wheel my chair and drink at the same time even with the sports hydrant that I have – possibly if I got a regular hydrant I could. So we slurped down some water and kept going. But then we got lost. We were walking with instructions to follow the pink ribbons and with a map, only the last stewards we saw before we got lost didn’t realise we were already running the course so we ended up heading the the start/finish again. Soon figured that out and got back to the main course, having missed a tiny bit (the one bit they had said was narrow and might be difficult in the crowd – and just as the fastest runners got there too thankfully) but made up the distance and then some with our accidental detour. The bit where my parents bumped into us and my dad tried to insist on pushing me back to the course so I didn’t do extra took longer than the detour; I refused to be pushed and mum backed me up when he tried again to insist.

We got passed by loads of people; and because of the announcement made about me at the start loads of people knew I was pushing myself. I tried to keep count of how many took time to squeeze my shoulder or wish me luck, encourage me, tell me i was a brave lady, etc as they went passed. After about a minute I had to give that up.

One lady told me I was nearly done. I laughed and said “oooh you liar. But I love it, thank you.” I think we’d just seen the 2K sign then (and we’d also seen the 500 metres to go sign but that was when we were lost). Two people offered to push me but didn’t mind me saying no. One of those went “awww I was hoping you’d say yes so I’d have an excuse to stop running.” and grinned. Another asked Sam if she (Sam) was allowed to push me. She told her no, and so did I – rather forcefully!

We had to pass one specific point three times and the first time the steward there told us we would be seeing him three times and that we’d be really glad to see him. By the time we saw him last we really were – particularly when he said we had 100 metres to go! And when we passed the 4K sign, Sam went up and kissed it, the crazy woman.

The toughest part for me is the fact that part of the course was over grass and I can’t wheel my chair on grass. I wanted to try but everyone told me not to kill myself and probably leaving that bit was the right move. I went an alternative way (they hadn’t realised that grass and self propelling a wheelchair is not a good move) and the organisers claim it was the same distance. Unfortunately for them, I’m not stupid. The grass bit involved going off of this path, looping around the grass in a made up route marked with pink ribbons and back onto the same path not far from where you left it, and they just had me and Sam go along the path between the two points. A huge part of me is so proud that I did the race for life. But there is another tiny part of me that sits here going “but you didn’t do the course everyone else did and you pretty much definitely didn’t do the whole 5K”. It’s close, I know, and I know that everyone is proud of me regardless. But…

My parents were there and Ben and Geri came into Oxford later to be there. They had a nightmare getting into Oxford and literally ran to make it before we finished. I could see the finish when all of a sudden I glanced over at my dad and saw my brother run up and make it – just in time. I’m not sure Geri saw us finish, I don’t think so. That’s actually when the second official photo of me finishing must have been taken, because I’m looking off to the side in it.

Adam Ball was still there providing commentary talking about the people he could see finishing and providing some encouragement. He announced when me and Sam made it back to the finish (which was also the start) and said he was surprised we’d been so quick, he’d expected us to be longer. He also caught sight of my hands and commented for all to hear over the tannoy that I would need new gloves. I’m not sure I actually do, but my hands were a right state. (After we finished, Sam rang her husband and as she put it – I was wearing black fingerless gloves but they were so dirty you couldn’t tell where the gloves ended and my fingers began. I had a pretty nasty blister right where they ended too but I never noticed it until mum gave me a wet one to clean myself up and it stung like anything.)

Then finally we were over the line, through the archway with it’s Cancer Research UK decal that marked the end. Sam and I hugged and then a steward (at my request) helped me off of the course and on to grass – this was the set up, off of the path onto the grass where the official end stuff was set up (GRRR) where we got our finishers medals, our goodie bags and some bottled water.

Met the family, wandered over to a gazebo and we hung out for a while chatting and drinking water. I made my Dad go and get me a hot dog because I’d been sick with nerves before and hadn’t eaten yet that day other than a quick cake bar right before the start. I was starved by that point.

Moments after that which stuck out to me was hearing about the last person to finish – an 84 year old woman whose time was roughly five minutes slower than mine if you added in my head start (as an aside, there were three Race for Life’s in Oxford that weekend and my friend Emma ran one the day before, she told me later than there had been a two year old there who had walked the whole thing. Wow.). Also, they were playing music and one of the songs was Heather Small – Proud

I heard that (it’s a song I love). And the lyrics (especially those below) called out to me even more than they usually do.

I look into the window of my mind
Reflections of the fears I know I’ve left behind
I step out of the ordinary
I can feel my soul ascending
I’m on my way
Can’t stop me now
And you can do the same

What have you done today to make you feel proud?
It’s never too late to try
What have you done today to make you feel proud?
You could be so many people
If you make that break for freedom
What have you done today to make you feel proud?

I listened to that and I thought “I know what I’ve done today to make me feel proud”. It was a magical moment.

>”yeah, well, I’m not normal.”

>I did the most wonderfully outrageous and somewhat drastic thing this afternoon.  I had my hair chopped off.

It was just below my shoulders and now the longest bits are chin length with lots of shorter bits.  And it totally rocks.  Pictures soon, promise.

Basically I went in and said to Lizzie (hairdresser) that I was thinking of going short and what did she reckon.  I did say no to shaving it all off but other than that gave her free rein, specifying that I meant *short* short.  It’s what she describes as a graduated bob but funkier.

And when she was finished she went “you do NOT want to see how much hair is on the floor.”   We both agreed that there was a pretty good chance I was leaving more hair on the floor than I was taking home on my head!  I nearly took a photo of it but thought that might be a little pathetic.

Anyways one of the comments that Lizzie made was that she wished she was as brave as I was to just go in and have the whole lot cut off.  She cuts my friend Sam’s hair as well and her opinion is that we are both brave (or i think she put it crazy) because we’ve now both gone to her going “i’m going short what do you suggest”.  She said that she couldn’t do that, that she hides behind her hair.  I’d never thought about doing that or that people did so it interested me but we got to talking about other things.

She asked repeatedly was I sure, etc and I just kept saying yes I want to and it’s hair it’ll grow back if I don’t like it.  I also said that for my hair is a part of my personality (well I guess hers is too); that it’s a coping strategy maybe a defensive one and a way in which I define myself as more than “that girl in the wheelchair.”

I put it to her that people stare at me anyway because of my chair so why the hell should I worry about my hair maybe not looking great in a new style or dyeing my hair bright pink/purple/blue whatever – better to do it and be happy and have people stare at me for something that I chose and that’s actually worth them staring at.  After all, my wheels may be sexy but I’d rather people looked at me and saw who I am.

And whilst that was as far as I went with her there is more to it then that.  Life is too short to worry about not having something to hide behind (in my opinion, I am not saying she is wrong) – I’ve lost too many friends too young to worry about what might be.  I live (or I try to) in the here and now.  Because it’s all I’ve got.

Also there is the part of me that thinks that I sure as hell did not go through all the physio and the three surgeries and the AFO’s and the OT and the teasing etc etc to spend my life hidden away and not doing what I want with my hair (and with my life).

Lizzie said at one point that people normally get all their hair cut off in the summer.

I went “yeah well I’m not normal.”

And you know what?  I never will be.  My hair is my statement.  The way I am abnormal/weird/crazy/whatever on MY terms, not on societies.

Gloria Gaynor sang “Life’s not worth a damn, till you can say, I am what I am”  and that’s what I believe.

>7 Years

>Today marks my 7th anniversary as a blogger.  I just realised that late last night.

Obviously not all of it is on this site.  And some of my older blogs are lost forever.  That’s not really a bad thing.  When I go back and read some of the older stuff (some of it is saved on my hard drive) it makes me cringe to see what I used to write about and how I used to write.  But it’s also nice to have that record.

Even going back to September this year (just for example) if I were to read my entries again I would find things that I had forgotten about.  It’s a trigger for my memory and  a great way to remember my history.  The big things, and the little.

Here’s to the next 7 years.

>112 Days

>I just realised that today is the 112th Day of the year.

And I have taken my medication on every single one of those 112 days.

For the girl who spent most of last year maybe taking the pills once a week? Hell, the girl who sometimes took them once a month if she was lucky? Simply unbelievable.

I know a lot of people won’t understand why taking my meds is so hard for me and why this is such a big deal. I don’t truly understand it myself. But who cares? I’m calling this an achievement.

>Look what I got!

>Freshly Drawn Gecko!

This is my new Tattoo which I had done today. It’s my first and despite the words of Klunky (the guy who did it and who assures me that I will want more) I don’t feel any great desire to get more. I wasn’t put off getting more but I didn’t leave all addicted to tattooing and desperate for another like he said I would. There were a few other designs I liked but I knew before I went what I had to get and as soon as I saw this design knew it was the one. It was about halfway through the first thing of designs I looked out – there were two, each of which took up most of a wall – and Sophie made me look through all the rest before I decided just in case. I was whining a bit at that point like a petulant child “but I want that one!!!”

I went to Tat2-U and they were all really lovely. I was surprised by the look of the place, expecting it to be dark and dingy and not very welcoming. Interesting side note: They have two sofas in their back to back for people to wait on and they are the same sofa that I have. They have the bright red covers on and I have the black though. We watched part of Titanic while we were waiting and while he did it. I thought that rather a strange choice of movie for a tattoo parlor but their you have it!

I did get rather up close and personal with the other tattoo doing guy (tattooist?) however. The space to get round the desk and into the room where they do they was a tiny amount too small to get my chair through (literally about two centimetres, I blame the camber of my wheels) so I stood up and Soph folding it and moved it then set it up again and then I took like two steps, turned round and sat down again. While she was doing that this guy offered me an arm for balance and asked how to hold me. I said something along the lines of however you want, just give me an arm. But I didn’t expect what I got. Two arms under my arms and held in a bear hug. I was very amused by that. Especially as due to the location of said tattoo I wore I strappy top that shows off my boobs loads and kept slipping down to show most of my bra. So he must of got a good feel of the girls. But heeeee I have a tattoo!

Description of the tattoo in case you need such things: It’s a black gecko and it’s got a kind of aboriginal influence. It starts about an half an inch above my right boob with it’s tail and finishes just below my shoulder / collar bone with it’s head. It looks like it’s climbing up my body.

Everyone keeps asking me why a Gecko?

I don’t really know, all I knew was that I had to have one. It’s what I needed to have. I have had that feeling for a good while now. One thing I do really believe in however is Animal Spirit Guides or Totems. And when I looked up what a Lizard means I knew that it is obviously my Spirit Guide and that’s why I had to have it. So much of it’s meanings and symbolism relates to me.

I found the information from Manataka.Org

LIZARD

Lizards are ancient brothers who are found in warmer climates all over the earth. There are five general families of lizards and literally hundreds of species, the largest being the Komodo Dragons weighing in at more than 350 pounds and the smallest is the Beata measuring less than three quarters of an inch long. They have many descriptive names such as the Australian Bearded Dragon, Yellow Spotted Gecko, Iguanas, Salamanders, and Horned Lizards who squirt blood from their eyes. Many American Indian tribes recorded their relationship with the lizard in images on pottery, petroglyphs, effigy bowls, figures, and shells and portrayed lizards in their ceremonies and stories as symbols of strength.

LIZARD MEDICINE

Some Southwest Indian tribes believe horned lizards can cure the sick by asking for the lizard’s strength in song and chant showing their respect to the animal.

The Lizard is often seen laying peacefully in the shadows of rocks or seen skittering around in dark holes, between light and darkness and is thus referred to as the ‘dream walker’ or one who lives in the dream world. Dreams are important to the human psychic and depict subtle messages from deep within the mind. Lizard medicine reveals these hidden messages during the dream state. Proper interpretation of these dreams often requires the assistance of one trained in the ways of the lizard medicine.

The psychic characteristics inherent in the lizard teaches those with this medicine how to awaken their own abilities by making choices that honor every part of ones life. When lizard appears it signifies a need to go within and analyze your present reality and once done, move with confidence and conviction out into the world of new beginnings.

A powerful totem to have, lizard reveals your weaknesses, your strengths and prompts the energy of change.

The lizard is very sensitive to ground vibrations, they have keen eyesight and superior hearing. Those who feel the spirit of the lizard can learn ways to use their enhanced sensory perceptions to connect with their deeper psychic and spiritual awareness.

One power of the lizard is its ability to escape from danger by leaving its tail behind and growing another. When lizard slithers into your life, it may mean a need to move quickly to avoid danger and be prepared to leave something behind.

>My wheelchair is…

>When I e-mailed the manager of CAB about yesterday’s event (she was off sick, bet she loved coming back to that e-mail) I used the analogy that my wheelchair, and to a lesser extent my walker*, is my legs and told her that a huge part of my freaked outness was because if it had of been broken by that bloody brat of a child I literally would not have been able to get home.

I wasn’t sure she would understand that but she said she did.  And she said she’s sorry it happened and she’ll get back to me about the question I raised about insurance.

Anyway I thought it might be interesting to share some thoughts about what my wheelchair is.  If you have any similar feelings etc on assistive technology or other things that you or someone you know use, please share them.  I would really like to know how common my feelings are.

  • My wheelchair is all pretty and purple
  • My wheelchair is in need of a good clean!
  • My wheelchair is a little bit broken because I’ve loved it so much
  • My wheelchair is a Kuschall Champion
  • My wheelchair’s name is Kass
  • My wheelchair is my legs
  • My wheelchair is a part of my body
  • My wheelchair is part of my personal space
  • My wheelchair is something I am proud of
  • My wheelchair is something I would not be without
  • My wheelchair is where I am happiest
  • My wheelchair is something I am scared to be apart from
  • My wheelchair is not who I am but is an important part of it.
  • My wheelchair is my wings
  • My wheelchair sets me free

*the reason why I say my walker is to a lesser extent and don’t use it in the above list as because I am not very confident with it and can do a lot more with my chair.  My chair is what I would chose if it were a one or the other situation and is truly the one piece of adaptive/assistive technology that has made the biggest diffference in my life.  I’ve chosen to use my manual chair in this list as it is the chair I use most and I have a bit of a love hate relationship with my current powerchair.