Rekindled

I’m reading a good book at the moment.  I hope to finish it tonight and I’ll review it for my blog in the next few days most likely.  When I flicked to the back to see how many pages it has I noticed that on the page after the end of the story there is the following quote.

“Sometimes our light goes out but is blown into flame by another human being. Each of us owes deepest thanks to those who have rekindled this light.”
Albert Schweitzer

I’ve had a tough year I think it’s fair to say.  And things are greatly improving and I feel like I’m not in the best place I’ve ever been in but I’m certainly in a much better place, possibly even a good place.

I love quotes as anyone who has read my blog for a while will probably realise.  This resonnated with me a lot.

I’ve spent time this year feeling as though I was worthless.  As though the ridiculous disablism I experienced at the hands of the NHS (something I don’t think I ever shared fully on my blog and I doubt I ever will) destroyed my self esteem and confidence.  It’s coming back but I still feel more fragile and a lot less confident than I used it in some ways.

Putting myself back together isn’t something I can do alone though – I’m only where I am now because of the people who “blew my light into flame” if you will.

My family.  My friends. The ones who get the problem when I explain it and the others who get my text and immediately text back “oh fuck.” because that’s all there is to say and they know I can’t handle being told not to worry. The ones who point out the bigger picture.

The people from the You Know You Have CP When… group for providing me with a sense of solidarity and understanding I’ve not felt in a long time (seriously, 300+ CPers – you know you can post and at least one other is there to say “yup, been there.” HUGE.).

The people who had nothing to do with what happened but tell me the way I was treated was unacceptable and they’re sorry and will see what they can do. The guys at one of my favourite Oxford venues who at a point on Sunday when I was about to lose it inadvertantly made me laugh.  Those who lurk in the background.  The ones who deny they’re doing anything special. And, sadly, the ones who show their true colours making me realise I can’t trust them as much as I thought I could.

Those who do things I would never expect.  On Sunday the Oxfordshire NaNoWriMo kick off meeting was at a venue I’ve been to once before but not since I’ve had this chair.  I’d forgotten that the entrance wasn’t properly ramped which meant I couldn’t get in as trying to go up it triggered the safety cut off thing.

My friend is one of the organisers this year and came over to see what was up. She said she was really sorry (to which I said it wasn’t her fault) and that next week we’ll go to another venue which has great access plus totally rocks. By this time I’ve got the cafe owner trying to make stupid suggestions of what I can do to get over it (it’s a mechanism which kills all my momentum if I try and go up something particularly steep to prevent the chair tipping and it can’t be overridden or pushed past  “Go as far as you can then stop and try again and “go backwards” won’t work). When my mate then asked what about now I said I was leaving because I couldn’t handle any more faffing and knew I’d cry if I had to.

10 mins later I was almost to the station when I had a call saying was I on the train yet because all 14 of them were leaving the cafe for the accessible venue. I went back to meet them and got there before them. Two of that 14 are my friends and three others I’d met briefly before. I was blown away that a group of mostly strangers would do that for me. Hell in the past I’ve had difficulty getting groups where practically everyone knows me to use venues I can access.

I try to always say thank you to those who prop me up and support me but I fear I’m not always clear or successful enough.  My light wouldn’t have come back anywhere near as quickly if not for all the people who surround me.

Thank you.

Happy Tears

I was asked to speak at an equality event today. About the access group (AFA) I’m chair of and a bit about my own story as a disabled person.

I think it well. I didn’t write a speech, I had a few ideas but wanted to just talk off the cuff. It helped that this is I think the third time I’ve explained to people what and why AFA is (although previously I’ve only done so in informal settings). The very first idea I’d thought of when thinking it over I forgot to use.

I talked about how I don’t suffer from CP because it’s all I’ve ever known. How just because me and another hypothetical person both use chairs doesn’t meant we have the same needs. And I talked about lots of other things. I can’t remember exactly, I wish I could.

One of the things I mentioned is how failing to provide access and inclusion doesn’t just mean I miss out. I shared the story of the Major Access Fail. Through that course I’ve made some new friends. But I’ve spent so much time fighting and arguing and being upset about that I feel like those new friends haven’t met me. They’ve met upset, depressed, fighter Em whose been made to feel worthless. They’ve not had the opportunity to meet happy, having a laugh Em who gets on with things, is confident, opinionated and loves life. Me.

After I finished speaking I went to the back of the room and the organiser leaned down and whispered to me “that was brilliant” so hopefully it worked. Next there were a few more speakers then time to mingle. During the mingling time I spoke to a few people and asked them if they thought it went ok. I was a little unsure I’d hit the brief. A few interesting comments, I think I might have got some people thinking.

Someone I vaguely know came over to chat. I think it was the third or forth time we’ve met. We did the usual “hi how are you?” bit and then telling me she’d liked my speech she burst into tears.

I froze and thought “oh shit”.

What I said was “I didn’t mean to make you cry.” hopefully she missed the panicked note in my voice

Through tears she shared why. She has a young granddaughter who has CP. Ever since the diagnosis she’s been upset about all the things her granddaughter wouldn’t do. Hearing me talk about my life gave her hope that things would be ok.

She told me the tears were happy tears, happy tears.

I gave her a hug and I must admit I had to fight off happy tears of my own.

I’m not sure what I said that helped, I never expected anything like that to happen. I’m not even really sure I did help, sharing struggles like that.

But…

If I can make one person think differently about how they approach disabled people I’ve succeeded in my talk.

Reaching someone else and helping the family of a toddler have hope that a CP diagnosis isn’t the end of the world is huge. I don’t have the words to explain what that means to me.

It doesn’t negate the bad experiences I’ve had. They still hurt, they still shouldn’t have happened but will again. And in the case of major access fail its still outrageous. But being able to use that in a positive way takes away most of the sting of the memory.

It’s not OK.

But it sure as hell helps.

♥ Emma

>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.

>Influences: Lily

>Back in January 2006 I had an idea to write a series of entries on my previous blog about the people who have been a big influence on me and my life. I only actually wrote one entry before abandoning the idea. But it’s an idea that I’ve been thinking about resurrecting.

Then we come to yesterday and today when I had a few small reminders of Lily. Lily was the person who I wrote about it that one entry and she died seven years ago. And she’s been with me in my thoughts and in my heart these last few days. It was the sign I needed to tell me to continue those pieces.

Below is the journal entry I wrote about Lily; it was originally written Jan. 28, 2006.

Influences: Lily

I’ve been thinking lately that I would like to write some more about some of the people who have touched my life. Not the people who are a part of my daily life but the people who played a small but significant part.

Lily was a friend of my Nanny’s and I’d like to tell you about her.

I just came accross an mp3 in my collection of “The Birdie Song”. It’s a silly song but it’s one that calls a fond smile to my face as I think of Lily who the melody brings to my mind without fail whenever I hear it.

She was very old when I met her and gradually got more and more fragile.

She was really sweet and looking back now I can tell she loved me and my family like we were her own family. She didn’t have any family of her own you see as she was a “barnados baby” Everytime we visited Nanny she would take us to go and say hello and Lily always greeted us with hugs and kisses. We took her birthday and Christmas gifts and she brought us little things then and sometimes “just because”

I can remember her buying me an Elvis Presley video and whilst I loved that she’d thought of me I never watched it (I was about 14 or 15). I can remember the day she bought a lottery ticket with the previous nights winning numbers on and claimed to have one. I can remember her smile and how she was always pleased to see us.

If there is one thing I learnt from knowing Lily is that reaching out to someone can give them so much at the cost of so little to ourselves. And through knowing her I like to think that even if at the time i didn’t feel like i was getting anything from our visits now I know that i actually learnt a valuable lesson about humanity and caring.

I can’t remember exactly when Lily died but I know it’s about six years ago (because she died a few weeks before Lianne and her sixth anniversary is fast approaching). And I remember my Nanny telling us about the funeral and how as Lily always loved to dance they played “The Birdie Song” as her coffin was carried out of the church.

And so for me, The Birdie Song is Lily’s song. When we were tiny and at school discos we all used to sing:

“with a little bit of this and a little bit of that and shake your bum da da da”

as we did the dance, we did it for fun. Now I am 24 and probably strictly speaking too old for it but I still do it when I hear it. For fun… and for Lily, who loved to dance.

Now…it’s a year on from that writing, it’s seven years since she left us and I’m now 25. But I still think of her with love and a smile on my face. And I do the dance, just for her.