>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.

>Week Three of the May Day Challenge

>It’s going well. I recommitted myself to weightloss last week after a slacking few weeks followed by a difficult week or two. And I lost five lb in the week.

Meaning my Tales from the Scale May Day Challenge total loss is now 6lb and my overall weight loss is 22lb.

I know 5lb in one week isn’t healthy, and I’m almost embarrassed by it but if you knew how much chocolate and coke (real coke, fat coke as they call it at sailing) you wouldn’t be surprised.

And I worked out four times last week!

Photo Sharing and Video Hosting at Photobucket

>You Tube help?

>Can someone who understands You Tube explain how to post the videos here, in words of not more that one syllable? I thought I had it figured out but as the entry isn’t showing up it looks like I haven’t!

Thanks muchly!

Incidentally, I don’t think the computer likes me much today – that’s the second thing I thought I had down only to find I didn’t.

Oh and if you want to see the video I wanted to share it is If Everyone Cared.

>What Do You Hear In These Sounds?

>

I don’t go to therapy to find out if I’m a freak
I go and I find the one and only answer every week
And it’s just me and all the memories to follow
Down any course that fits within a fifty minute hour
And we fathom all the mysteries, explicit and inherent
When I hit a rut, she says to try the other parent
And she’s so kind, I think she wants to tell me something,
But she knows that its much better if I get it for myself…
And she says

What do you hear in these sounds?
What do you hear in these sounds?

I say I hear a doubt, with the voice of true believing
And the promises to stay, and the footsteps that are leaving
And she says “Oh,” I say, “What?” she says, “Exactly,”
I say, “What, you think I’m angry
Does that mean you think I’m angry?”
She says “Look, you come here every week
With jigsaw pieces of your past

Its all on little soundbytes and voices out of photographs
And that’s all yours, that’s the guide, that’s the map
So tell me, where does the arrow point to?
Who invented roses?”
and…

What do you hear in these sounds?
What do you hear in these sounds?

And when I talk about therapy, I know what people think
That it only makes you selfish and in love with your shrink
But oh how I loved everybody else
When I finally got to talk so much about myself…

And I wake up and I ask myself what state I’m in
And I say well I’m lucky, ’cause I am like East Berlin
I had this wall and what I knew of the free world
Was that I could see their fireworks
And I could hear their radio
And I thought that if we met, I would only start confessing
And they’d know that I was scared
They’d would know that I was guessing
But the wall came down and there they stood before me
With their stumbling and their mumbling
And their calling out just like me, and…

The stories that nobody hears, and…

I collect these sounds in my ears, and…

That’s what I hear in these sounds, and…

That’s what I hear in these,
That’s what I hear in these sounds.

What Do You Hear In These Sounds ~ Dar Williams

I have several Dar Williams songs on my iPod but yesterday this one came on. I’d not heard it before but it struck a chord with me and I’ve listened to it several times since.

I’ve been in counselling since April 2006, I’ve made no secret of that or of the fact that I have depression. It’s not something I am ashamed of but it’s sort of hard for me to explain why it [counselling] helps me and what I think/feel about it. Depression too is something that it’s hard to get someone who hasn’t lived it to understand. That always both pleases and frustrates me all at once. It pleases me because it means they haven’t had to walk the path I have walked but it frustrates me because sometimes I just want people to understand.

I’ve made lots of progress in counselling. It’s hard for me to see just how much progress I’ve made until my counsellor or my GP points it out to me but I have. It’s not usually someone else who makes those connections for me. My counsellor seems to think it’s normal and not surprising that I never connect them myself.

I think the biggest place I have made progress is in med compliance. Before I would always take them for a few days and then not for weeks on end and I’d mess with the amount I take. Now it’s May 27th 2007 and the last time I missed my meds was 31st Dec 2006. I occasionally mess with the amount of baclofen I take but only to take slightly more (as my Rx states) on super spastic days. Fluoxetine and I have been in exactly the same relationship all year – I take the Rx’d amount, no more, no less.

So why did I need to share the song?

Because it sums up either exactly or very closely all/most of my thoughts and feelings about counselling and depression.

>Presenting: a rant

>About 17 months ago I moved house. It was a very joyous occasion.

But I would really, really like to know why so many companies and official agencies insist on keeping all of the addresses you have lived at since they knew you on file.

In the past 17 months I have had social services sending people to the wrong house to see me and sending masses of post to me to the wrong address. I’ve had my care agency who still haven’t updated my “about Emma” sheet they give to new carers to show my new address. Meaning that several carers have gone or almost gone to the wrong place.

And then there’s today. On Monday I saw my GP and she agreed to write a letter supporting my appeal against the problem with my care. I went to pick it up this morning.

Something made me stop just outside the medical centre to read the letter. The letter itself is fine, one of the dates is wrong but not by enough to make me make them change it. But it says RE: Emma Crees and then lists my old address. The address I’ve not lived at for 17 months

To start with they were telling me I should have told them I moved. I pointed out that I did and it was there mistake. They can’t tell me why they wrote that, they can confirm they have my correct current address, they just messed up and they didn’t even apologise. However they are going to redo the letter with my correct address and I can collect it next week. On Thursday. Quite why it will take so long to edit the document correctly (I assume they saved it on a PC somewhere) and get it signed again I don’t know.

All they could tell me is that they have to keep previous addresses on file. Same as everyone else.

And obviously, get it mixed up and wrong frequently. Same as everyone else.

>May Day Challenge Week Two – one day late

>A post a day late but for week two of the May Day Challenge I lost 1lb. Bringing my total weight loss for the challenge to 1lb and over all (since Feb 21st 2007) to 17lb.

Three weeks to go until I go on holiday and I am being extra committed this week. Those lb are coming off this week and so that water is going down, down, down my throat. The coke and the chocolate however, well they are still in the shop and far far away from me.

Did you know that it’s possible for wheelchair users to do Karate? I just discovered that this evening and there is a class near me that could accommodate me and my wheels. Something to consider.

>Rockin’ for Stevie

>

Oh here we are and here we are and here we go
All aboard and we’re hittin’ the road
Here we go
Rockin’ all over the world

Well gidy up gidy up and get away
We’re goin’ crazy and we’re goin’ today
Here we go
Rockin’ all over the world

And I like it, I like it, I like it, I like it
I li-li-like it, li-li-li
Here we go
Rockin’ all over the world

I’m gonna tell your mama what you’re gonna do
So come on out with your dancing shoes
Here we go
Rockin’ all over the world

And I like it, I like it, I like it, I like it
I li-li-like it, li-li-li
Here we go
Rockin’ all over the world

And I like it, I like it, I like it, I like it
I li-li-like it, li-li-li
Here we go
Rockin’ all over the world

And I like it, I like it, I like it, I like it
I li-li-like it, li-li-li-
Here we go
Rockin’ all over the world

And I like it, I like it, I like it, I like it
I li-li-like it, li-li-li
Here we go
Rockin’ all over the world

Stevie’s funeral was today. And they played that song at the end. It was as wonderful as it’s possible for a funeral to be and very fitting for my adopted older brother.

I had some beautiful purple flowers with thistles in which were from me (I had specified that I wanted purple but thats all) and I wrote on the card. Love you like a brother, thank you for so many happy times together Emma xxxxx. My mum wrote on the card for her and my dad’s flowers that words could not express how much they would miss him. And that was right.

I love you Stevie, adopted big brother and legend. I miss your infectious cheeky grin and dancing with you, laughing too. Fly free, babe, fly high.

>Family Relationships

>Kathryn is hosting the next Disability Blog Carnival and has suggested the topic of “Family”. These are my thoughts on family and disability.

I’ve always been disabled and so I can’t comment on that aspect of the interaction between the two (acquiring a disability, I mean).

What I can tell you is that my sister is seven years younger than me and we have a brother who is slap bang in the middle of us. Which meant there were times when I was in my chair and she was in the buggy. Explaining to a four year old why he is the only one who has to walk is not easy. So I can remember a time when we were in a DIY store. I was being pushed in my chair (I didn’t get an actual chair I could self-propel until I was 9 or so) and Sophie was being pushed in the buggy. And Ben was screaming and throwing a tantrum because he had to walk and it wasn’t fair.

I can tell you that I used to wear night splints and that I have many memories of one going on me and one onto Ben because he wanted the attention too. When he’d fall asleep my parents would gently take his off and put it onto me. Heaven help them if they woke him up – because after all I got to wear mine all night.

And then there were the times when I would throw a fit because I wouldn’t be allowed to do something Ben or Sophie were and I was the oldest and it just wasn’t fair!! I think the worst was when I was 13 and had to have it explained to me that CP was forever.

Occasionally still I feel a little pang when they do things like I cannot. Like today sat in my sister’s car listening to loud music as she drove I thought how much I would love to drive. But that’s just one of those things were we always want what others have. I remember when I first got my previous powerchair. It was the first time I had one and I showed Soph how to drive it and then we went down the quiet little cul de sac I lived on at that time – me in my manual and her in the powerchair. She loved it and was laughing and asking if they sold those things to able-bodied people because she’d really quite like one. She did also try to take it up a huge curb and got it stuck but thats another story…

I get on well with my parents too. I would say that my CP does make things a little tense between me, them and my brother and sister too at times. But equally I know that everyone has reasons why they don’t always get on great with their family and if it wasn’t my CP and my care needs making us all frustrated and snapish it would be something else – and often it is something else. This just comes back to my tendency to blame everything bad on my disability, as I’ve discussed before.

I could write a lot more about my relationship with my family – particularly with my parents but there is a lot of background to it which would take more time than I have to explain. I have a show to watch in fifteen minutes and somethings are more important that blogging no matter how much I love it!

And with the things I am thinking of in particular I have found many people have misunderstood without knowing that background. Because those things are so opposite to the normal perception of the little crippled girl who lives with her parents and relies on them etc etc people assume that my parents are uncaring and we don’t get on. Nothing could be farther from the truth. We love each other and we get on well but they broke the stereotypes because they wanted what was best for all of us – and it was that.

>Pondering the care situation

>I’ve yet to do anything concrete about the situation with my care being stopped. But I have been thinking and wondering and researching.

No longer having care is something of a tempting idea. However it’s not a practical idea. I will always need some form of support system in place. It actually doesn’t look like I will be particularly successful in getting this decision reversed but I’m going to try.

Reading the report on my needs is galling in that several of the parts I feel spin what I actually said into something different. And in places it reads as though she was wearing some rosy-glasses because you know, I really could clean the floors and the bathroom and cook full healthy meals for myself and change my bed, I’d just like a little help.

Yeah, right.

Yes I can do parts of each of those tasks and there are other things that my carers sometimes do which I can do myself. But that’s about energy levels and fatigue and the amount of time it takes me to do stuff. It’s about enabling me to have a life rather than just keeping me alive.

My counsellor said something to me on Wednesday about how I can lie to as many people as I want to about whatever I want but not to myself. To myself I must be true. And she’s right. I’d like to stop having care. If I could manage I would have agreed like a shot. But I can’t manage. And pretending I can isn’t going to do me any good. As much as I’m not keen on it, my truth is that I need care.

A quiet day at work allowed me to investigate our intranet and find the care criteria. My social worker had sent me information on them at my request and basically that just said “there are criteria. They fall into four categories. we pay for the top two only. Tough luck if your needs are medium or low.” and no details. Nothing about what needs are in which categories.

The information I found at work does list how needs are classified. And based on that information I believe my needs should have been classified as “medium risk” rather than low. Which still isn’t high enough to get my funding back but substantiates my feeling that the decision had been made before my social worker visited me. I do understand the need for criteria with limited funding but feel that this should be flexible and take into account personal circumstances. It’s all well and good her telling me my parents can provide my support – but actually, they can’t do it and I can’t cope with the guilt that sometimes gets involved in their providing my care (which is to do with me, not them).

Mum and I don’t believe we can get my care funding back for me based on physical need. So on Monday morning I have an appt with my GP to talk about my depression. Because risk of deteriorating mental health is a substantial need and would therefore mean I had to be funded. I was due to check in with Dr B about depression stuff at some point in July time anyway, just for a med review. But now I need her to help me fight this decision and have to go sooner. I have to hope she agrees with me else I’m up shit creek. I don’t like it. It seems like I have to emphasis or even over-emphasise my disabilities (my depression is classed as a disability under the DDA’s legal definition) to get what I am entitled to. So much for a “people first” society.

I’ve spent more time than I can remember in therapies and working with family and friends and carers to learn to do things for myself. I am fiercely independant. And now I am being discriminated against for that.

Sometimes I wonder why I bothered. Life would often be so much easier if I were one of those poor pathetic helpless little cripples. But then again, it would also be boring.

>In which, I make little sense

>

In hospitals they say you know, you know when you are going to die. Some doctors say it’s a look patients get in their eyes. Some say there’s a scent, a smell of death, some kind of sixth sense. When the great beyond is headed for you, you feel it coming. Whatever it is, it’s creepy. Because if you know, what do you do about it? Forget about the fact that you’re scared out of your mind. If you knew this was your last day on earth, how would you want to spend it?
~Meredith Grey, The End of The World, [Grey’s Anatomy, Season Two]

I’ve been thinking a lot this week about that and also what I would want to do if I knew that one specific time I saw someone would be the last time I saw them. If I knew they were going to die and I would never see them again.

Obviously I’d never want to leave and for that “last time” to be over and also obviously I could never know for definite that it would be the last time.

I’ve written and deleted a lot more on this but the truth of the matter is that it all basically boils down to two things.

Carpe Diem – Seize the Day

And also it doesn’t matter if you know – and personally i’ve decided that I might have done things differently the last time I saw people I loved but they wouldn’t have wanted that. It would be an act of grief and in a way, grief is a very selfish thing, in lots of circumstances.