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.

This is the story of…

We played Consequences at the NaNoWriMo kick off meet up today. It was pretty funny and I said I’d record them for posterity. I figured my blog was a better place for them than the forum as things get lost on there!

This is the story of how Bugs Bunny met Goldilocks on Red Dwarf. He said “I’d kill for a slice of that pie.” She said “Hush you!” And they got lost in the forest and found the witches house.

This is the story of how Reginald Harris met Marilyn Monroe at the circus. He said “Have you ever seen Mamma Mia?” She said “How RUDE!” And that’s why they don’t have a dog any more.

This is the story of how Lord Grantham met Queen Victoria on Platform 9 3/4. He said “make my day punk.” She said “that’s what?” So they went ice skating in George Square.

This is the story of how David Cameron met Miss Piggy in the GOL section of the phone book. He said “give me your toes, baby!” She said “that reminds me of the time I ate an entire buffalo.” And that’s why spaghetti is now illegal in France.

This is the story of how Jean-Paul Gaultier met Jordan in a booth of the London Eye. He said “I only speak French.” She said “oh ah just a little bit.” Then they went to the pet shop and bought goldfish.

This is the story of how Dangermouse met Shania Twain in Mornington Crescent. He said “don’t move! There’s a banana here somewhere and I’ll find it if it kills me.” She said “I’ve always wanted to learn how to whistle. They lived happily ever after.

This is the story of how Mickey Mouse met Eva Green on Jupiter. He said “Gold is my favourite thing, precioussss.” She said “Pandas are not lobsters.” So they had no choice but to eat hot dogs until they felt sick.

This is the story of how Mark Twain met Elizabeth Bennett in Churchill’s bunker. He said “do you like vanilla ice cream?” She said “I am going to call the police!” And then they jumped off a cliff.

This is the story of how Winston Churchill met Mary Poppins at the £2 book store. He said “can I buy a box of arsenic?” She said “I like old movies.” And they all won NaNoWriMo.

This is the story of how Gollum met Margaret Thatcher on the London Eye. He said “that’s the way the cookie crumbles, my dear.” She said “sometimes I think I can hear trees talk.” Aliens blew up the building they were in.

This is the story of how The German met Alice (from Wonderland) at The Jam Factory. He said “I’ve got a brand new combine harvester.” She said “I prefer golf clubs.” And then Frank ate bacon.

This is the story of how Ash Ketchum met Isabella Valentine on Betelguise 4. He said “your shoes look fantastic.” She said “ok, I’ll go for drinks with you.” Then they did vodka shots and ate cake.

This is the story of how Jonas met Doris at the Eiffel Tower. He said “I love jam”. She said “I think they’re writing novels.” And they ate fish and chips in a yellow submarine,

Wheelchair Etiquette

Every so often I see articles doing the rounds online about dos and don’ts for dealing with us wheelchair users.  I don’t agree with a lot of things those include.  I was thinking about writing my own version but basically it comes down to

Be aware of the persons preferrence – a lot of these articles say you should get down on wheelchair height if at all possible when talking to a wheelie.  I prefer that people remain standing – or sitting whatever they were doing.  I’m not a fan of the crouched down beside me making a special effort thing.  I’m not just saying that because of the seat riser in my powerchair I’ve always thought that.

And don’t touch my damn chair.

Don’t lean on it.

Don’t move it when I’m not in it unless I ask you too

Don’t sit in it when I’m not in it.

Don’t grab my handles and take over pushing

Don’t grab my handles and stop me because you want to talk to me (which is what someone did tonight and is why I’m finally writing this post)

Realise that there are always exceptions to these rules but I’m not always going to tell you in advance what they are.  I don’t always know what they are! One such example is in this entry and still makes me giggle to remember four years later.

I’m wondering if this is a topic I need to come back to at a later date and in more detail – what do people think?

The need to be grateful

I went shopping in a brand new craft shop last week.  It had one of those lifts where just the platform moves and you have to hold the button down the whole time.  It was also one where you have to open the door yourself. And on the ground floor it had a ramp up to it.  I got another customer to open the door for me so I could go in it and then backed my chair into the door so I could open it at the top

And when I came down I grabbed a member of staff and asked for help.  She offered to come down in it with me which I took her up on.  She asked what I’d found and if I do a lot of crafts.  Commented how stupid needing to open the door to the lift was. General small talk, kinda jokey and just nice.

When I made it to the check out the same staff member was there and joked “fancy seeing you here” I replied “yeah such a surprise” and she told her colleague that we’d bonded in the lift.  That staff member went off while I was paying and commenting that “she’ll hate me for doing this, they get put up in the staff room” her colleague jotted down that person’s name on one of their feedback slips which tells you how to go online and give feedback.

I didn’t know what to make of that. I’m pretty sure a big part of this is one of those “my issue” things but it still made me a bit unsure.

Because it is very nice to find help that’s needed in a shop quickly and easily.  And more so when the person is happy to do so and makes it obvious without being over the top.

But at the same time it was just help with the lift.  It wasn’t anything above and beyond really.  If you think about it in terms of the now defunct Disability Discrimination Act it’s a reasonable adjustment and no big deal (I have no idea really how the replacement Equality Act deals with these).

I believe in complaining – and I believe in acknowledging good service although I know this is something I could do with doing more.  By giving me the slip with the staff members name though I felt like it was being made out to be something unusual that they didn’t have to do and that I needed to be grateful for. As though that second worker, the one at the checkout wouldn’t have done what the first one did and was surprised by it.

Whilst I’m sure that wasn’t what they meant I didn’t like it.  I thanked the staff member who helped me and the one who gave me the card. I always do.  But helping people is a part of their job. It’s not an act of charity designed to make the staff feel good.

The card with her name is still in my bag. She gave me good service and I think I’ll send it off (not least because it enters you in a prize draw).  But I hope next time I go there I don’t encounter the “bonus points” attitude.  Even if it wasn’t intended.

Readathon October 2012

This is my third readathon.  After my first one I thought that whilst I enjoyed dedicating a lot of time on one day to reading I wasn’t sure I’d take part in an actual readathon again.  Clearly I was wrong.  I’ll come back to this post a few times throughout the day and edit in what I’m reading and updates and the like.

So far:

First I read Heather Leaves School by Elinor M Brent Dyer.  That’s one of the La Rochelle books and is new to me.  I grew up on her Chalet School ones and loved them (still do!) but these are much better in my opinion.  I only have two of them left to read – Seven Scamps and Janie of La Rochelle (yes I am reading them out of order as I can find them on ebay and the like). Brilliant books.  Really “nice” feeling without being over the top and still manage to be engaging and relevant today despite first being published/written in the 1920s.  I do love a nice bit of Girls Own reading every now and again.  That had 151 pages.

Then I reached for a Babysitter’s Club book – Mary Anne and The Memory Garden by some ghost writer pretending to be Ann M Martin.  Those are totally my guilty pleasure books that I started reading again last year (another occasional ebay buy).  I was really into them as a child but must admit when I went back last year I was horrified and was all “I would never let a child read this drivel.”  But it’s one of those so good its bad things and I enjoy them.  Plus this one is one I’d not read before and actually it handled a very sensitive subject (death) very well. 153 pages (big text!)

Update 19:26

I feel all discouraged and like I’ve made no more progress reading.  Which is completely ridiculous and I seem to remember happening back during the last readathon too (it also might have been a part of the reason I thought I wouldn’t do it again last October).

My goal for the readathon was to read Heather Leaves School (which I have) at least one Babysitters Club book (which I have) and one from the 1001 books to read before you die list.  Because I use that list for ideas and I feel like it’s forever since I last finished a book on there.  Although the truth is I haven’t been finishing books properly for ages until a few weeks ago when I seemed to get back into reading again.

So I picked up The Trial by Franz Kafka which I started reading ages ago and was getting into but then never touched for weeks.  Read that for five minutes and was debating going back to the beginning and restarting.  Got interrupted by the phone (after maybe 5 pages). Put that down.

Picked up The Scarlet Letter which is another one I’ve been trying to read (although that’s been a bit of a struggle it’s so short I don’t want to give up completely on it).  I read that for half an hour lying on my bed.  According to my Kindle I read 15 pages but I’m really not convinced by that as it seems to think several screens = one page. Anyway the urge to be properly snuggled under my duvet for warmth and a nap won out and I dozed on and off for an hour and a half.

Right now I’m having an internet break and then I’m gonna watch NCIS.  I’ll be back to reading later – and maybe back with my old friends the Babysitter’s Club once again.

I’m feeling more positive about the readathon after reading the comment left on here by Alita. It’s much appreciated.

Update 21:04

I’m reading again.  a BSC mystery now.  And I’m totally blown away by all the comments and tweets.  I’ll check out some of your blogs later.  Thanks guys xx

Update 23:58

I finished that BSC mystery the name of which escapes me at the moment… it’s in the other room and I really can’t be bothered to go and get it.  It was quite a fun read.  Not too much of it was in brackets considering it was ghost written by Ellen Miles. I was surprised by that. I do wonder who much experience Ann and the ghost writers had with actual 13 year olds though because seriously some of the stuff they do or try to do is completely ridiculous.  But perhaps I’m missing the point. 148 pages in that.

I think for the next readathon I should probably pick one long book to focus on.  It was something I considered for this one but decided against.

Total time spent reading: 3 hours 45 minutes

Total pages 472

State of The Emma

Title blatently stolen from one of my friends who frequently posts blogs titled “State of The [her username]” Couldn’t resist!

I’m doing better, I think.

I had a UTI or a virus or something the other week but that’s resolved.  Locum GP thought virus but was happy to treat as though it was a UTI based on my history and my symptoms.  I’m not sure what it was but I took a five hour nap one of the days when I was “off” so I definitely had something going on.

I’m mostly medicated. And I’m a lot more motivated.  I’ve still been thinking a lot that I don’t fancy doing this or I really can’t be bothered with X but I’ve been pushing past that and doing stuff.  Enjoying it too. Which means the “meh I can’t be arsed” feeling comes less.

Very very spastic at the moment. But less than a few days ago.  I think I’ve noticed a trigger for that which I hadn’t picked up on before.  Not one I can avoid but it’s definitely manageble. And I’ve put a spare pillow on my bed and started shoving it under my knees when I sleep if it’s really bad.

I bumped into a couple of acquaintances and had drinks with a good friend on Wednesday.  Possibly I might go for a drink with one of the acquaintances too, I must facebook him and sort something out.  I also went to an interesting CAB meeting and accidentally ended up in HobbyCraft.  That was a good day.

I was most amused by the fact that the meeting took place on Electric Avenue in Oxford.  Above the street name someone had spray painted “gonna rock down 2”

Gonna rock down 2 (graffiti) Electric Avenue (street sign)

Finally, I set a new record for the standing frame on Tuesday!  50 minutes! I made my Dad take a photo of  me in the standing frame holding up my iPad with the timer on it.  But that’s still on my camera so I’ll have to share it another day.

Speaking Out

A few days ago it came out that the little girl who went missing in Machynlleth in Wales last week, April Jones has cerebral palsy.  It kinda made me stop and pause a moment hearing that she’s got CP just like me more than anything else I’d heard about the case. The news coverage all seemed to use the term suffer “Missing Girl April Suffers from CP” screamed the headlines.

I posted to a facebook group for CPers that I belong too that I wasn’t sure whether to be impressed that she’d gone missing Monday night and it had taken until Wednesday night before mention of her disability was made in the press.  Or annoyed by the use of the term suffer.

Impressed because of the added shock value CP would bring wasn’t used immediately. And annoyed about the term suffer because it’s so negative and not appropriate.

Now the group I belong too is really cool and has some really opinionated kick ass people offering support and friendship. I love it.  I don’t think I’ve felt like I belong in an online disability group like I do here.  I also posted a similar comment about the term suffer on twitter.

And in both places there was a bit of a discussion on it. Some people felt like the term suffer wasn’t what mattered here, finding April is.    The group of CPers seemed to focus much more on the CP side and I felt like the tweeters had much more of an issue with my having an issue with Suffer. And I agree that locating April is the most important thing. Sadly however the search is now a murder enquiry and it looks like she won’t come home.

But I don’t want people to pity me. I want people to know that CP isn’t a disease.  It’s a disability, a life long condition that I live with.  And I don’t suffer from it.  I have it.  It’s a really important distinction. One that takes away from the automatic pity “this is something negative” response and shows that it’s OK to live and accept and simply be disabled and content.

Of course for the majority of the people reading that story about a missing five year old who suffers from cerebral palsy it’s just another fact in an already very tragic news story. And those of us who have CP or other disabilities might see it differently whilst still seeing the tragedy of April’s case.  That doesn’t mean I’m wrong to speak out about something seemingly trivial like language though.

I take my time before I speak out and sometimes I pick my moments, decide that now is not the time or this person will never understand or something similar.  The trouble is there is always a reason not to say “I’d prefer you not to use this term to describe disability because XYZ” and if I always went with that reason people would never know what I think.  I’d never manage to reach out and change anyones opinion.

I’ll always speak out whenever I feel I should and that I can.  That might mean that sometimes I say things that others don’t understand or that makes them uncomfortable. And occasionally I might come to regret it and realise that then wasn’t the time.

But at the same time it might be the thing that helps someone feel better about themselves as a disabled person. That makes me feel less like a worrthless freak hated by society (I’ve had days when that’s how I’ve felt) Or it might change attitudes.

I like my disability, I’m proud of it and I love my life.  I have friends and family who support me and I have brilliant opportunities, pretty much everything I need or want is in my reach if I want to go out and get it and I’m generally in a good place and enjoying life.

I want that for other people with disabilities too. I want disability to be seen as a good thing.  And OK so others think my brief comment is inappropriate.  I can’t do anything to help April. But I can speak out and help make sure that other little girls and boys with CP grow up to be accepted and not face negative stereotypes.

That’s so important I can’t describe it. And if I can do something about it, I always will.