Legacy

I can’t remember where but a few weeks ago I read something that I’ve been thinking about on and off ever since. It said that in the future our descendants won’t need to employ traditional genalogy techniques to learn about us. Because what they know about us will be from our facebook posts, tweets, and blogs.

I like that idea because it means that potentially (should it turn out to be true) it means those in the future will know a lot more about my past then I will tell them. And they’ll know more about me than I do my own ancestors.

I knew all of my grandparents and saw three of the four regularly until they died. It’s been years but I still miss them dearly. I have memories of time we spent together and of some stories from before I was born that they shared.

I never met any of my great grandparents and really I know very little about them. Sometimes I hear the stories and I think that I want to know more. Or I remember a time with Grandad or with Nanny (my mums parents who were divorced for most of my life and I have few memories of them together) or with Gran and Grandad (my Dads parents) and I suddenly wish I could ask them why was… Or what happened next?

That’s partly why I kinda like the idea of my Internet postings as my legacy. Because its my words and my experiences told my way. Future generations probably will know us in a whole new way than before. As a disabled person it’s probably extra relevant. I think we’re in a time of big upheaval and change in the disability movement and whilst its looking bad short term, in the long term it could go either way. I suspect with the Internet as an archive or legacy the saying “history is written by the victors” will cease to have quite as much meaning or power.

But it’s also making me think more about what I do post. The way I blog has been changing over the past year or so. My boundaries and what I feel comfortable sharing have altered a lot. In part that’s because I’ve changed but the changing dynamic of the Internet and online community has played a role too. I feel I post more about what I’m thinking than what I’m doing now. But at the same time whilst guarded some of it is more personal, more open. That was happening before I heard the legacy quote. It just gave me an understanding to my thinking I’d maybe been missing before and brought another aspect to it.

If my great great great granddaughter knew nothing about me but the contents of one tweet do I want it to be the fact my arm itches right now? So I am trying to perhaps think again before tweeting or facebooking or blogging and share what is really important to me first.

That doesn’t mean that all the silly and random stuff I post is going. Because sometimes I’m still gonna want to share that silly joke I heard or that I had pizza for tea.

>WHY?!

>Dear Russell T Davis and the Torchwood production team,

I. absolutely. LOVED. that last episode.  But seriously, as the last in the series?  Cruel and unusual punishment, that.

Why must you do this to me? Why I ask you?!   WHY?!

I guess we could call that a successful series finale and a brilliant cliffhanger.

But please start series three really soon.  Like tomorrow.  Or in the next five minutes, that would be even better.

~Me

>Letters Unsent

>Dear Starbucks,

If you must have stupid banner things outside your shops then you must (but only if you really, really must). I suppose that was kinda ok. But for the love of god either leave them to wave around properly in the wind or weigh them down properly. You know, doing it so that the god damn weight doesn’t get caught by the wind. In fact, do it so there is no chance in hell of that happening would be your best bet.

Because when those banner things get caught by the wind and then sent by the wind in your wheels and the weighted part hits you in the thigh? That hurts like a bitch. And continues to do so for eight (and counting) hours afterwards.  Gives a lovely black look to the thigh too.  Sexy, that.

It’s not exactly rocket science people!!

No love,

Me

Dear CP,

I know that it times of stress, cold, or pain you like to spasm. And that you like to do so when it comes to things that surprise me and make me jump too. Most of the time, I understand that, we’re cool.

But if I ever have a freak accident with a starbucks banner again (or, indeed, any banner). Give me a break from the whole spasm/clonus/extension thing, please? Making my arm spasm onto my joystick just made things worse.

I understand your need to make me spasm, I really do. But come on, CP, there’s a time and a place for these things. And that just really wasn’t it

lil bit of love,

Me

>A Letter Unsent

>Dear you,

I know you’ll never read this and even if you did you wouldn’t understand it. But sometimes a girl’s just gotta get some stuff off of her chest.

If I need help I will ask. Don’t just stick your hand on my side without saying a word and then act all offended when I ask what you’re doing. Don’t assume that there’s a chance I’m going to fall as I’m transferring and that you putting you hand on my side just above my hip will prevent that happening. It’s just really rude, really off putting and substantially increases the chances that I actually will fall!

I know from a previous experience we had that you’re just trying to be helpful and that you don’t get it. I kept my cool this time.

Last time made you think I had an “attitude problem” I know and I couldn’t be bothered to deal with it this time. I couldn’t really be bothered to deal with you. Looking back I probably should have snapped at you to “get your hands off of me!” when you grabbed my wheelchair and tried to take over. But you know what, there are plenty of things I can’t do – let me do the things I can. And even more importantly in that case, my Quickie tips incredibly easily, I couldn’t take the risk of you reaching around and pushing me from where you were sat as you were. I didn’t want to hit the floor.

Thanks for going “what’s she done, what’s she done?” when you saw me and S talking to a first aider this afternoon. And even more thanks for going “she’s cut her foot!” to every other person in there when S told you. It was just a tiny bit of blood and no big deal for a toe walking CPer like me. Quick antiseptic wipe and a plaster and i was good to go. Getting it blown out of proportion like that was really annoying and difficult too.

If you must ask none of your business questions ask me! You tell me you’ve been a carer longer than I’ve been alive. You have relatives who use wheelchairs, I know one of them. Personally I thought this would be obvious to you but obviously I was wrong.

Please, difficult as it is for you, leave me to ask for help. And if I do ask, help me exactly as I say. Because if i ask for an arm to lean on whilst standing and you pull me from sitting to standing chances are I’m going to lose my balance (or not get it in the first place) and you might hurt me. I could plunk back into my chair instead of transferring or I could fall. Even more importantly you might hurt yourself.

~Me

>Letter to My Gran

>Darling Dearest Granny,

You used to use one or the other of those greetings when you would write me letters and I thought I would use both to start this letter to you. You were both of those things to me and so much more. More than I could ever express on paper or to someone who didn’t know you and didn’t know all the wonderful little and big things that made you who you were, who you ARE. My Darling Dearest Granny.

You’ve been on my mind a lot lately. Because you being you allowed me to do something that I’ve wanted to do for a long while. And if it wasn’t for that it wouldn’t have happened. I actually feel really guilty about that but don’t worry I know you wouldn’t want me too.

Of course I would give anything in the world to have you here with me instead of that – even if only for one more day. Unfortunately that can’t be and truly I would never wish you back because I know you wouldn’t want that.

Thank you for my new Powerchair Granny. I love it and I love you even more than that. I hope you realise that you are here with me and I think of you every time I use it. Please tell Grandad that I love him too and I’m sorry, so sorry that I can no longer use the powerchair he helped me to get. Again, I know he wouldn’t want that but I can’t help feeling that way.

How I wish you were here.

I have tears streaming down my face as I write this. Missing you, missing the rest of my family who has gone on before.

How I long for the day when we meet again.

How I wish that I can make you proud.

How I miss the hugs and the laughter and the kisses and the chocolate and spam sandwiches and millions of other things.

Thank you Granny for teaching me and loving me and most of all for being you.

You’ll be in my heart.

Lots and Lots of Love, always and forever and then lots more love than that,

Emma xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
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>What is, and is not, a toy

>Dear you,

It appears that the following wasn’t 100% clear to some people so let me reiterate it:

When we tell people who are waiting to be seen that we have a few toys for their kids to play with, we mean the ones in the toybox. We do not now, nor have we ever, meant the computers, panic alarms, mousemats, the advisers bodies and clothes, the doors, the donations boxes or MY ELECTRIC WHEELCHAIR.

I know I’m not using my chair in the bureau and it’s just behind the reception desk but that still doesn’t mean that it’s a toy. Also given the fact that your child is about two I hope you realise that my powerchair weighs about eleven stone (154lb) and that if they manage to turn it on they are going to do some serious (if not fatal) damage to themselves.
And also I think this wasn’t made clear: you are responsible for your kids and you have to watch them. Watching them pull at my top and my boobs and giving them evils when i pull their hands off of me, seeing them break one of the donation boxes and tell them they are very naughty but letting them keep going is totally not what we meant by being responsible and watching them.

As for letting them look at my electric wheelchair while you read some leaflets, that’s just about ok because kids get curious. Letting her get so curious that she messed with my footplates and armrests and PULLED THE JOYSTICK OFF. Well that’s even worse. My equipment is my legs and had it been actually broken I would have been stranded at work unable to move.
Just be very very grateful that I didn’t realise your brat had actually done more than look at the chair before you left the bureau. Because you do not want to see me as angry as i was at that point in time. And also be even more grateful that I don’t have my new chair yet. Because that would have made me even more angry.

Let us hope we never meet again,

Emma

>I love writing these “Letter Unsent” but I could do without it.

>Dear medical people of the world,

You know the part of medical school where they suggested telling your patients that the deterioration CP-ers tend to face once they hit their twenties is to be expected and just like that which frequently causes professional sports players to retire in their thirties? Yes, that part, you know what I mean. It was a shit part of medical school, it really was and you should have known better than to repeat it to me.

And also, telling me I can’t be getting worse as CP is “static” and need no more treatment other than to take more baclofen when you haven’t even examined me beyond my arm and I have stated that my biggest issue is my legs, I feel I am getting worse and given you examples of things I can no longer do because my spasticity is so high? Muchos shit, muchos.
Also when we had the discussion about the need for me to do my physio six million times a day and I told you I wasn’t going to play ball with that? Well, I realise that you probably got your response to that from the same crappy lecturer but still… Telling me that I must do my physio six million times a day and I should because if I were a professional ballerina I would have to stretch that many times a day and what’s the difference? Well here’s a clue. I’m not a ballerina, I don’t get paid to have CP and oh for gods sake just shut up.

And to various other medical people who have made similar comparisons throughout my life… well, I think I’ve made my point clearly enough.

If you were anything like I was as a student you spent the odd hour you should have been in lectures in the bar… you would have been much better spent to spend those lectures there instead of attending them and then harassing me with the shit you learnt there. Think of all the aftershock you could have drank and the games you could have played!

No love,

Emma

The top two paragraphs are what happened at my appt on Tuesday, the other example happened a couple of years ago.

>Stop asking questions!

>Dear People of the World,

I know we’ve only just met and I realise that after our brief meeting we will probably never meet again but of course I don’t mind answering your questions!

No, I do not have Multiple Sclerosis
No, I do not have Polio
No, I was not in an accident
Believing in God is not a magic cure to being disabled
I am not like this because I sinned in a previous life
I am not married
And yes I am doing something special this afternoon – I have plans!
Yes, I can hear and speak
I even went to university
I know it’s shocking but I am perfectly capable of being a CAB adviser
The toilet is something I manage just fine, thank you very much!
I do know that I am disabled, I don’t need you to tell me that with a tone of wonder in your voice.
I don’t have kids
CP won’t stop me having kids.
Yes my friends/parents/brother/sister do take me out. But – don’t faint – sometimes I even go out by myself! I even went to Madrid alone earlier in the year!
No, wheeling my wheelchair is not hard work. Neither do I need you to just walk up behind me and start pushing me because “I looked like I was struggling” and they “wouldn’t like to be disabled”

Now, I’ve answered your questions please answer mine:

Are you married?
How many kids do you have?
Can you have kids?
Any problems going to the loo?
What about clothes – what size do you wear?

That walking lark looks like hard work – I shouldn’t like to be able bodied – here I’ll take you off for a ride in my chair and not give you a choice in the matter. I know I just really scared you but I was trying to be helpful and I don’t care what you think!

Oh, well yes, those questions I just asked you were rude and insulting. But guess what? So were the ones you asked me!

The exact details of my life/my health/my disability are none of your damn business. Please shut up and leave me alone.

No Love,
Emma

p.s. if, by some slim miniscule 1 in 1,000,000 chance we do become friends I might be happy to answer some of your questions without thinking you are a rude bitch. But yeah, in a current person off the street relationship you stand NO chance!!

>A final goodbye

>Dear Gran,

One of my carers suggested I do this. She suggested I write it in a card and place it with you as your body takes it’s last journey tomorrow… But I find it easier to type and I think the idea of this easier to deal with and more comforting than a card. I know that you will know this wherever you are… you probably already know what is in my Heart and what I’m going to say and I’ve yet to write it, I don’t really know what I’m going to say to you yet.

Tomorrow is your funeral. Oh how I wish it wasn’t!

I can still see you sat there in your chair in the lounge laughing at us and being happy that we were there. I would sit at a sort of right angle to you most of the time but I always tried to spend a few minutes perched on the edge of my chair holding your hand and cuddling you and chatting up close. How I wish my CP allowed me to do that more often and for longer. And how I regret that tomorrow I will not be able to stand up when the others do, kneel when they do and instead must remain in my chair.

I don’t often regret being disabled, believe it is right for me and that I have it because I am strong enough in my soul to cope with the trials it throws at me. But I won’t participate fully tomorrow because of it and I do hate it for that!

I know that you wouldn’t want me to feel like that and I’m trying not too. I know that you were proud of me for all that I am and for not letting me stop me. I will participate in everything and I know that you believe that not standing etc doesn’t affect that but I know that after your strokes you understood where I’m coming from – knowing that it’s ok that I can’t but still hurting all the same because I can’t.

Talking of being proud, did I ever tell you how proud I was of you… for everything you were and everything you taught me. And especially for how well you coped after your strokes and as you gradually became more and more disabled by them. Despite my disability being lifelong and your only becoming disabled in the last six, seven years or so I learnt a lot about how to cope with my disability from you – your courage and your smile and the way you kept fighting till the very end inspired me and taught me how important it is to say and to live as though I have a disability, it doesn’t have me. Because that’s how you lived. It is now how I live and how I will continue to live. To honour the woman that you were and the woman you helped me to become and continue to help me to grow into.

I can remember visits from the Pillow Fairy, Easter Egg Hunts, a Barbecue in the rain one day when Dad and Uncle A had to cook under an umbrella. I remember going to feed the chickens and so much more. Games of school where you would be a pupil either called Dim (because your initials were DJM) or Arabella because you liked the name.

You loved horses. I have many, many memories of going Horse Racing with you and Dad. Sitting on the grass making daisy chains between races and chosing horses to bet on because you liked the name or it was something Grandad or one of us liked. You would watch the racing on TV as well and your enjoyment was palpable. I also remember you coming to watch me in some of my Riding competitions. I was so proud to not just have my parents and brother and sister with me but my Gran too.

Just like when Grandad died we are having family flowers only and having a collection. We’re going to give the money to Riding for the Disabled in your memory – to the group that I was a part of and that gave me so much for 16 years. It was Auntie Sheila’s idea. I remember how proud of my riding you were. I remember how giving you were and how you would have done anything for anyone It seems really appropriate that we do this for you as a part of our final goodbye… our see you sometime. But oh how I cried when Dad told me that yesterday and how the tears fell even harder a few minutes ago when I printed off a notice about the donations.

I don’t want to finish writing this letter. I don’t want tomorrow to come and for it to be your funeral. I don’t want to face the truth that you really, truly are gone and not sat in your chair laughing and watching TV like usual. I feel like you should be. But I am also happy for you… happy that you are with Grandad again and the rest of your family and friends.

Do me a favour? Give Grandad a big hug and a kiss for me (Nanny and Grandad T too if you see them) and tell him I love him lots. Remember that I love you now and forever and that I am so so proud to be able to say that YOU are my Gran and am thankful that you helped me to become the person I am.

I miss you sooooooo much and hope I can do you proud with the rest of my life

Emma xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

>One More Day… A letter which sadly, oh so sadly, must remain unsent

>Dear Nanny,

A year is a long, long, long time. Yet in other ways it seems as though mere minutes have passed instead of 365 long and lonely days since you left us. Tomorrow is a year and however much I might wish I could change that fact I can’t.

So long since I hugged you close and said “love you lots” as I left your house or as we hung up the phone. So long since I asked you how you were you and answered “I am, are you?” So long since you came to mums house for lunch and said “oh Jane…” when you saw how much she’d given you. You’d cover it in salt, pepper and mustard, eat all you wanted and save the rest for “my mate” aka Milo, our dog.

A year since Wednesday’s meant finishing work then either going to Smarts for fish and chips to take to your house for lunch or meeting you at the pub. We’d play cards more often then not after lunch or you’d have a magazine to lend me. Magazine’s always lived underneath the seat cushions on the sofa and your chairs. I never did learn why. Sometimes Sophie would bring Milo down for a cup of tea and he’d always go straight into the kitchen because he knew if he did you’d find him a biscuit. You’d say “hello fella” and stroke his muzzle. Every few minutes you’d be asking Soph “does he want to do a tinkle?” I can hear you as if it were yesterday not a year ago.

A year or more since we last went shopping and I helped you on your eternal quest for a pair of Brown shoes. You never did find that perfect pair, did you?

I hope wherever you are now you’re sat there in the comfiest chair ever with just the right ones on your feet, a roast beef dinner, glass of lemon barley, liquorice allsorts and a cup of tea for afters. Reading the latest Danielle Steel and shouting at the TV when you don’t agree with it.

It’s been quite a year for me too, Nanny, I know that you know that but I’d like to tell you anyway…

I have my perfect dream flat, I moved in in December. You would love it, it’s close to town, to CAB, the station and to mums. And it’s only five minutes from your house. I don’t walk past your house if I can help it, it hurts too much.

My work with CAB is going well, I advised a client for the first time the day before you died and how I wish I could have told you about it. That one was really hard and the first few were but I think I know what I’m doing now… one lady was so happy about what I did for her she brought me a thank you card and a box of thorntons chocolates. They give me more responsibility there now. I love it. I helped at an Age Concern information fayre a few weeks ago, running the CAB stall. I saw your neighbour Mary there and she spent ages going on to Audrey who was running the stall with me about how great you were and how much mum helped her taking her to tescos at the same time as you. She was talking about when she went to Skye with you. I’d forgotten about that. Mary held my hands as we talked, gave me a big hug and a kiss on the cheek. It was nice but I’d rather have had a hug from you.

The article I wrote for Skill was reprinted, you knew it was going to be but I wish you could have seen it. I’m contributing to another article at the moment about post uni options for disabled people.

I loved you dearly, Nanny, I still do. More then I could possibly say. I could never wish you hadn’t died because I know how poorly you were and that as much as your death hurt us it was most likely a blessing to you. I know this letter might make it seem that this past year has been all bad. It’s been pretty good. But much as I know it’s not possible, you could have made it better.

You know me, Nanny, I love quotes and poems and song lyrics.

And I found one that says what I do wish for better than I ever could.

Last night I had a crazy dream
A wish was granted just for me
It could be for anything
I didn’t ask for money
Or a mansion in Malibu
I simply wished, for one more day with you.

Chorus:
One more day
One more touch
One more sunset, maybe I’d be satisfied
But then again
I know what it would do
Leave me wishing still, for one more day with you.

One more day.

First thing I’d do, is pray for time to crawl
I’d unplug the telephone
And keep the TV off
I’d hold you every second
Say a million I love you’s
That’s what I’d do, with one more day with you.

Chorus:
One more day
One more touch
One more sunset, maybe I’d be satisfied
But then again
I know what it would do
Leave me wishing still, for one more day with you.

Chorus:
One more day
One more touch
One more sunset, maybe I’d be satisfied
But then again
I know what it would do
Leave me wishing still, for one more day.

Leave me wishing still for one more day.
Leave me wishing still for one more day,
With you.

One more day.
One more day…

Diamond Rio – One More Day

Love you Nanny, Lots and Lots and Lots and Lots and Lots and Lots and Lots and then Lots more than that,

Emma x x x x x x x x x x x x x x x x x x x x x x x xx x x x x x xx x x x x x x x x x x x x x x x x x x x x x x x x x x x x x x x x x x x x x x x x x x x x x x x x x x x x x x x x x xxx x x x x x x x x x x x x