My brother and his girlfriend move in together yesterday.  And today they had a housewarming BBQ.

The house they’ve moved into is an actual house - with an upstairs and a downstairs.  We’d thought the upstairs would be “out of bounds to me” - I used to climb stairs on a regular basis as up until I went to uni I had an upstairs bedroom.  And even then until 2002 I would be climbing stairs to get to my bedroom during the uni holidays.

Then in November 2002 my parents moved into their current house - which is a chalet bungalow.  And I got a downstairs room.  I first saw the house that Christmas and I went upstairs twice to see it.  I’ve not been up their again (and my sister actually thought I’d not seen the upstairs at all).  Other than one incident not long after I left uni (four years ago) involving a broken lift and me getting myself down some stairs, stairs have been something other people did since 2002.  I’ve done the odd step (there are two into my parents house).  But stairs?  I don’t do stairs.

Or I didn’t until today.

I wanted to see the upstairs of my brothers house.  I’ll admit I wasn’t sure I still had the ability to climb them it being so long since I did.  Mum didn’t think I could and didn’t want me to try.  Telling me that is kinda like a red flag to a bull and before I got there I had wondered if it might be possible.  So that was it.

But I was in the kitchen with my brother and we just went and starting going up the stairs.  On one side there is a bannister, on the other a bannister part of the way and then a wall.   I had wondered about going up on my bum - but I walked!  I held on with one hand and held on/lent on the wall with my other.  Ben walked behind me.

I practically flew up those stairs.

Just me and the walls/banister no help.

I couldn’t believe how quickly I got up them or how easy I found it.

Had a brief look round the upstairs and then sat on their bed for a while catching my breath while they greeted more guests and showed them round.  Then Dad came up and helped me into the bathroom which I also managed without help (and we hadn’t been sure I would even with help).  Yay for small bathrooms which mean the loo is right by the wall and the bath is right the other side and on the side i need help on the most.

Dad helped me walk back to the top of the stairs and after going down the top two, I sat on the top stair and worked my way down on my bum.  My favourite floaty blue skirt might not have been the best choice for stuff to wear for that.

I was breathless after my adventure but very pleased.

Welcome back, stairs.  I can’t say I’ve missed you over the last six years.  And I don’t think we’ll be having the relationship we had before.  Because I have no regular need of you now.  Just a now and again when I visit my brother and need the loo will have to be sufficient for you.  But it is nice to know that I’ve still got it.

Oh and the house is very nice and the BBQ was fun.

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.

I’ve been out in my Quickie wheeling around every day this month!

I know it’s only the 6th but that’s still a good thing.  Only relatively short distances but longer ones will come.  I’m just pleased about the daily thing and I’m really enjoying it too.  I used to be really really active and sporty and I haven’t been for years.  I like that Sporty Em is coming back.

My mum doesn’t want me wheeling myself anywhere near any roads because she thinks it’s too dangerous.  We had a silly argument about that.  Yet when I told her that I had a crazy conversation with someone about us maybe doing a half marathon next year she thought it was a great idea.

She really confuses me at times.

Actually she really confuses me a lot of the time.

I’m hoping to get a cyclometer fitted on my chair either tomorrow or Saturday and then to do some longer distances over the weekend.

Also went swimming on Tues with Mum.  I swam 16 lengths (same as last week) and I also walked 4 lengths (didn’t do any last week).  But this time I swam them faster and with fewer breaks to rest.  The contrast between being with Mum and going to the disabled session on a Friday with RCV was huge.  She was pushing me to do more, go faster, not take a break.  At with RCV it’s very much them trying to get me to stop, take it easy and warning me not to over do it.  That really frustrates me and I don’t agree with it.  I do understand why they do it.  But I don’t agree.

Now that it’s March and the Race for Life is a little over three months away I’m kicking the training for it up a gear.  I’m taking it seriously.  And as a first step towards taking it seriously I decided that I would get outside and wheel myself some distance each day.  I didn’t set the distance in stone I just decided that it would be a daily thing.  Sounded like a good way to get my stamina up and my fitness back.

So today I wheeled myself to my parents house hung out there for an hour or so with my brother (and his girlfriend when she got there) and wheeled myself back.   I had assumed it would take me at least half an hour to get there and maybe a bit less to get back.  It took me 19 minutes and 21 seconds (approx) to get there.  I didn’t time how long it took to get back.

If the paths right around where I live weren’t so crap i’d probably have been quicker but I’ll sure as hell take that!

Maybe I will live up to the name of my chair (Quickie) after all!

I wrote here about the “society hates disability” experiences I had when I went to London three weeks ago.  And one of the things I briefly mentioned was the fact that the people sat behind me in the theatre complained that I/my wheelchair blocked their view.

I wrote a letter of complaint to the theatre about that (along with complaints to Reading and Waterloo stations).  And I received a reply to my complaint this morning*.

They are pleased I found their staff helpful and the theatre accessible.  She comments that they have a nation wide training scheme called “showing you we care” that they use to accomplish this.  I find that name amusing.  And they are also run by the same company (Live Nation) as the theatre in Oxford where the service has never been as good and they appear to have different policies.  So that’s slightly confusing.

She apologised that there were no staff at hand to deal with the problem in a “tactful and discreet manner” and also apologises “profusely” that the people who mouthed off at me didn’t take it up with staff.  She also thanked me for my “calm and sensible approach” to the problem.  Which is acknowledged to be a difficult situation.  That bit makes me laugh because I am so not a calm person and it was hard for me not to tell them to shut up and fuck off.  The presence of kids all around us being the only thing that stopped me.

Finally the letter ended with the comment that they take all comments from customers very seriously and they appreciate the time I took to write.  Also they hope I will return so they can exceed my expectations ;o)

That’s a really great reply and I felt like they took my comments seriously, weren’t just saying things because it was expected.

And also a copy of my letter has been forwarded to Disney Theatrical Productions so they can be aware of the problems I experienced and take it into consideration when considering allocation/provision of seating for wheelchair users or other disabled customers in future.

That’s HUGE.

I’m so pleased.

*Post around here must be seriously improving, the letter was only dated yesterday. 

I’ve been out and about in my manual chair this afternoon.

I noted the time when I left home and when I got back in.  I left home at 14.31 and returned home at 15.16.  I picked a point that by my (very) rough estimate is 150 or 200 metres from my house - uphill on the way there, down on the way back.  In the time I was wheeling I didn’t stop and I did there and back three times.

My hands were black by the time I got in.  And I was gagging for a drink.  Otherwise I think I might still be out there now…

I made pancake batter from scratch this afternoon.  Covered the entire kitchen with flour and then covered myself in flour as well for good measure.

Ben and Geri came round late afternoon and they cooked the pancakes.  I wasn’t sure that my arms would be up to the pancake cooking thing.  I had a go at flipping one however and managed to do it.  That surprised us.  Didn’t manage to catch it in the pan though so the floor caught it for me and I gave that one to Milo who also came.  Always good to have a dog to eat the cookery mistakes.  Tried again with another one with Ben holding the pan with me as well that time - flipped it fine and got it caught on the edge of the pan but… it also hit the floor.  We joked that Milo was very lucky because the only pancakes I cooked were made especially for him.  And we laughed lots.

I was going to make toad in the hole if there’d been any batter left but there wasn’t… might be a thing for another day.

4 days late for Shrove Tuesday but well worth it.

I did it!!!

I missed NO medication in 2007!!!!!! 

Here’s to less medication (legitimately) in 2008!!!

Happy New Year!!!! 

Christmas was good.  A lot better than I had anticipated/expected.

My mum said her favourite bit of Christmas was on Christmas Eve late at night when my brother came back from the pub and we all randomly ended up playing drink while you think only without the drinking part…

it’s a word associate type game they played down the pub and you have to drink whilst trying to work out what to say - someone says the name of a celebrity/famous person and then the next person has to say someone whose name begins with the first letter of their surname.  So for example if Ben said Vinnie Jones then I could say Julie Walters and Soph could say William Shakespeare, Mum would say Sarah Ferguson and Dad could say Farah Fawcett.  Add in various rules about double letters and one word names and you have the game.  It was fun.   And surprisingly, more difficult than it seemed it would be.

I ate too much.  I had serious attack of the giggles.  I didn’t drink very much alcohol but what I did have seriously hit me (although that was the same day as the giggles).  I didn’t get so stressed out and out of control that I threw up or felt ill.  I didn’t shout at anyone (beyond repeatedly shouting for mum to come rescue me in the loo when the equipment we set up to help me failed whilst I was using it oh, about three times, or when someone else had moved it).   I didn’t argue or otherwise fight with anyone - no one did.  And I didn’t shed one single tear.

In short it was everything possible it could be, and it was good.

I know this probably doesn’t make sense to anyone else but for me I think the best bit was when I got home late on Wednesday night and thought things through.  It hit me then.  No shouting, no feeling ill and stressed, and not one single crying spell or even a tear.

That’s the first time in about as long as I can remember (at least since 1999) that Christmas has been that “easy” for me.  And I enjoyed it.

At the time I didn’t realise it - because it was unremarkable.  But then I came home thought things through and the realisation became the best part of my Christmas.  I’ve come a long way, baby…

It’s been, what, maybe, three months? since my counselling ended. And once in a while I get to missing it. And also once in another while I spot a way in which I benefited from it and managed to make positive changes to my life.

Today is both of those “once in a whiles” all at once.

I can’t talk about specifics because, as you’ll know if you read regularly, I signed a confidentiality agreement at CAB. Well possibly I could as this doesn’t actually relate to a client but I am also trying not to rant or moan or generally write about people who may read this. Or to inadvertantly identify other people. It’s actually not that easy to do but I’m giving it a shot. I think it’s important and maybe part of my growth as a blogger. Although, it does sort of make me wish this was anonymous.

Anyways, I digress, once again.

Actually, I can’t explain this very well.

Lets just say that something really innoculous happened and really was just someone trying to be helpful but going about it completely the wrong way (and which potentially could have caused a huge problem had the circumstances been different). And I just ended up feeling belittled and like the fact that I had the authority/experience and was supposed to be in charge was ignored/undermined.

But then I was able to think that when I had been the one in the opposite position I’d found it hard to not do those things and that a lot of the issue was my perspective. I didn’t get angry, I didn’t get upset. I did get frustrated but I made sure my client didn’t see it, maybe the other person did but I don’t think so.

What I did do was let it go and then later when I had five minutes with my supervisor and their supervisor I checked what the procedure is supposed to be and said to them that I knew it is hard to do and it was a case of simply forgetting but it had happened. We all agreed that there are ways and means of handling things and that this needs to be reiterated to the newer staff.

I was pretty proud of myself.

Even more so when my supervisor deliberately said something to me she knew I’d not like to wind me up. And I just went “yeah OK then thats fine.” Then she told me she’d been joking and complimented me on the way I just took it.

So yeah it was a bit of a reminder of the progress I made (which I don’t often see for myself) and it’s something that if I were to go back to my counsellor I would discuss with her.

But you know what, I don’t need to right now.