Life is short

I just found this image on Facebook via Shelley and couldn't resist sharing. It's a text based image sharing a manifesto for living based on the idea that life is short and is from Holstee. As a side note I believe the version on that site to be an accessible (described in the html tags) image.




Beautiful isn't it?

It's almost a shame that I didn't find this yesterday when I was pondering why we do things we don't like and don't do things we like. But actually I think I like that it's in a separate entry.

50 Questions That Will Free Your Mind: Question 3

I recently came across 50 Questions That Will Free Your Mind. I was very intrigued by the questions and decided to make answering them one of the goals on my current 101 in 1001 list.

I'm going to try to answer one question a week. You can find the other answers I've written so far here

3. If life is so short why do we do some many things we don't like and like so many things we don't do?


Why indeed? Duty, honour, integrity. Because we feel we must? I think it's probably all of those things and more.

Lately I've been trying to put myself first more and worry less about things I should be doing because either society believes I should or I feel like I need to.  Things like taking on others problems and being a shoulder to cry on.

I did a good job of that today when I met a very newly disabled person who obviously needed some info and support.  I told her one or two very basic bits and gave her the Advice Guide website URL.  With others in similar situations I've offered my e-mail or phone number (although those were people I knew a little better and knew I would see again, this lady I may not see again).  Part of this is the CAB adviser in me - I know where to go to claim housing benefit, how to fill out a DLA form that sort of thing so what does it cost me to say "oh contact the council to sort out HB" etc etc? I don't (and won't) do proper advice but I do pass on bits that are easily found otherwise or sometimes tell people things from my own experience today - e.g. I told the lady today that DLA forms are depressing because you have to share how bad things are and it helps to get someone else to help you with it - I'd never do a disability related assessment form without help.

I do enjoy my CAB work (most of the time, obviously not always) and I get a lot out of it - it can be very rewarding.  And sometimes helping friends is nice too.  But I am cutting that down a lot (well, as I said I'm trying to) because it gets draining, especially when you have to keep telling people the same thing.  It's not always easy to say no, especially when people go "hey, Emma knows about that (or might do)" but that's the society expecting people to do things again.

I suppose the other thing to think about with this question is "Would we be happy if we did what we enjoy and didn't do what we don't?"  And I think the answer is yes.  Realistically we couldn't just do things we like and not do things we hate as much as we'd all like to.

Tim McGraw has a song called Live Like You're Dying.  I really love that song.  It's about making the most of what time you do have, enjoy it and truly live.



(lyrics on the you tube page)

The thing is though if we all "lived like we were dying" we would be happier, more fulfilled and perhaps even happier because we wouldn't be as stressed.  But only in the short term.  Because at some point society would fall apart.  Maybe we wouldn't have clean clothes.  Or the shops would run out of food.  Or there wouldn't be public transport because no one wanted to drive the buses.

Sometimes we have to spend time doing things we hate, or aren't keen on (hate maybe to strong of a word) because it's what we need to do to survive.  I think however that it can be hard to determine how much is enough and when we really can say no.

There are obviously times when we can't do what we'd really love for legitimate reasons.  Others when we kid ourselves that it's legitimate but really it's not.  No one wants to be thought of as lazy or a scrounger or anything like that.  But everyone wants to be happy.  I think the true answer to this question lies in the fact that we're all (me especially) fighting to find a way to balance those two things - and finding it hard to do so equally.

This is a tough one to answer but those are some of my thoughts ;-)

50 Questions That Will Free Your Mind - Question 1

I recently came across 50 Questions That Will Free Your Mind. I was very intrigued by the questions and decided to make answering them one of the goals on my current 101 in 1001 list. I'm going to try to answer one question a week.

How old would you be if you didn't know how old you are?

This is a tricky question and one of my least favourite on the list but I decided to work through the list in order so I'll give it a shot.

I'm 29, I'll be 30 in December.

I think in many ways growing up with a disability meant that I learned certain life lessons earlier than the majority of people do. For the most part I see this as a good thing. On the flip side having CP meant that some childhood and teenage experiences or perhaps rites of passage were out of my reach. Some I have now experienced and others I haven't. This used to be something that really bothered me but it doesn't as much now. Partially because I've come to realise that they aren't all they are cracked up to be (in some cases) and that a lot of people are in similar positions to me.

But the question relates to age. I think the experiences I "missed out on" if you will made me younger than my age - or at least they did when I was a teenager. The thing is though, that's part of being a teenager - firsts, lasts and bluster and bravado about what you have and haven't done.

Equally learning the life lessons early - about rights, fairness, trust, access etc. Meant I grew up quicker than my peers. Because I knew about relying on people who were meant to help you and being let down and I knew I didn't have an automatic right to do what everyone else was, that sort of thing.

I think as an adult those two things are less of an issue than they used to be. They've played a big role in making me who I am but now they're in the past and rarely come out. I do think in someways I am very fucked up and this played a part in it. That said I said that to one of my besties last week and she said she didn't think I'm at all fucked up. So I must be doing better than I realise. Or doing a really good job of hiding it.

I also think actual age becomes little more than a number once you get well into your twenties. I have friends who are younger than me by several years , ones who are older than my parents and everything in between. Obviously we have different life experiences to each other and bring different aspects to our interactions. But even if all of my friends were turning 30 in December like me that would still be true.

So if I didn't know how old I am, what age would I say? Mid twenties. I like where I am in my life right now and for the most part I like who I am. That'll do me.

Unless, of course, the question gave you a do over and let you go back to where and what you were at that age. In which case I'd choose 18 and just off to uni. Those years were very important to me - and a hell of a lot of fun!

Brief check in

I've got lots going on and lots to think about and I'm feeling rather frazzled just thinking about how busy next week looks like it's going to be.  I'm fine but I don't want to blog about all the stuff I have to think about at the moment (mostly because of one person who might be reading this).  I'll be back tomorrow with more of an update but for now a few bits:

I liked the new Torchwood but thought it wasn't dark or sexy enough.  I think I probably need to rewatch Children of Earth however because I felt a bit like I'd missed something...  It's certainly a very interesting premise and I just hope spacing it over 10 episodes isn't going to make it drag at all.

And I absolutely loved Harry Potter and The Deathly Hallows part 2.  There was a second showing about 40 mins after we came out.  I gave serious consideration to go to grab my prescription as planned then getting a sandwich and going back for a second viewing but I didn't.

I'm on google+ if anyone wants to add me.  Emma Crees.

2011 Begins

I could probably spend a long time here writing about all I want to do and all I hope to do in 2011.  And there are a lot of things I would like to do or that I really really want to do or I otherwise expect 2011 to bring.  I've seen a lot of review of 2010 blog entries and lists of New Years Resolutions.  All very interesting and I enjoyed reading them.  I like doing the review entries and I think before I've posted resolutions.  I just don't think I will this year.

Regardless of whether you call it "Two Thousand and Eleven" or "Twenty Eleven" (personally I'm not overly sold on "Twenty Eleven but I'm sure it'll grow on me, the year is less than a day old after all) I'm not sure that hopes, dreams and New Years resolutions really matter.

I could sit here and type out everything and anything to do with them.  But it's not the making of lists or the planning that matters.  What actually matters isn't having goals or achieving goals.  It's about trying to do things.  It's about making progress.  And most of all it's about living.  I was already thinking about that to a certain extent but then a couple of things I read yesterday and a conversation I had reminded me of it and made me think it even more.

Big change and big moments can happen.  I'd love if they did.  But I don't need to plan big to make that happen. I just need to take a step and start moving.  Because the thing I want most in 2011?  To know that I tried to make the most of it and to make it mine.

You've come a long way, baby

Today is Blogging Against Disablism Day.  I'm not really sure what to write about today and I've been thinking about it a lot, on and off, all day.

The other night I was at an event and I got talking to an older lady.  It's to do with a project we're both working on and we'd said we were both interested in doing a certain part of it.  There were people from all over this area there but it turns out she lives in the same town as me.  In fact I don't think she's too far from me although she's not right on my doorstep and I'm not 100% sure exactly where she is.

So we were chatting a bit and she asked how far I get around in my powerchair.  I said about going all round town and going on the train in it to Reading, Oxford, Birmingham etc.  Her surprise at that was obvious - it seems she thought I'd be stuck pretty close to home (although she didn't say so in as many words) and she said I'd have to come up to her for a cup of tea.

My first thought about that was that chances are due to access it's not going to happen (old houses where she is I think).  Then I was I wondered a bit that she had seemed surprised that I get out so much.  I didn't get a chance to think about it too much because the problems with the taxi then occurred.  (Off topic update on that, I complained and have heard back they are taking it very seriously and will speak with the driver.)

But it's a long time since anyone's been surprised by the fact I go places.  In fact, I'm not sure I remember that happening before.  It problem has but not in recent memory.  I get surprise about living alone, about sailing and other things that I get up to.  Sometimes people tell me that the going off on trains thing is big to them.  Not something like going out of the house and getting around in my own town.  It's a little thing to me, it really is.

I tell everyone that I do these things "with a disability" because I don't exactly have a choice in the matter.  It comes down to the fact that I want to do these things and to do them I have to do them that way.  The choice is do it or don't do it.  Nothing more than that.  And it usually ends up being more than worth it.  Not always, but often enough to keep me happy and keep me trying.  I didn't tell this lady that because it was just an offhand comment she made which showed her surprise and then she was busy inviting me for tea.  It's such a little thing though that I don't think my usual spiel would have been used there.  Mostly because I was surprised by her surprise.

I probably would leave this entry here and have it as a bit of a gripe about people's attitudes to disability.  Then I mentioned her surprise to my mum.

My mum and I get on really well but at times I think that she doesn't quite get the fight against Disablism and Disphobia.  I get frustrated sometimes if she's so OK about things that make me mad.  Then sometimes her different perspective makes me think about things differently and that's ok.

So I told my mum about this lady being surprised that I get out and about in my powerchair (and in my manual too but we didn't talk about that).  And she pointed out that when this lady was young probably a person like me would have lived in a home (institution).  They wouldn't have had the opportunities that I've got and that will come to me in the future.

This lady's point of view is shaped (as all of ours are) by what we experience when we are younger and growing up.  I know I can make assumptions based on things I thought I knew because to me they are "normal" and find them to be wrong.  It can be quite a hard thing to realise and sometimes it's difficult to admit you're wrong (I'm not trying to say that this lady in anyway needs to apologise to me or admit that).

The other thing that my Mum's comment made me realise was how far we've come.  I can see how far things have come in my lifetime and the changes that have happened.  They're huge.  But I never thought about looking further back before.  And that really changes things.  As well as making that tiny little bit of surprise make a lot more sense.

The only problem is, however, that I don't think we've come anywhere near far enough.  And that's why days like today are so important.

It Doesn't Interest Me

A blog I read most days is Malisa's.  She is a very strong woman and a wonderful writer.  I feel like I learn a lot reading her words (although I've never really told her that or interacted with her too much).  I forget if I've shared her link before or not but definitely think that her site is worth a read and also that a couple of the specific people I know who read this would probably also enjoy reading it and get something from it.  She writes on caringbridge so I can't link to specific entries but in her most recent one she shared the following poem which I wanted to pass on here.

It Doesn’t Interest Me

It doesn’t interest me what you do for living. I want to know what you ache for—and if you dare to dream of meeting your heart’s longing.

It doesn’t interest me how old you are. I want to know if you will risk looking like a fool for love, for your dream, for the adventure of being alive.

It doesn’t interest me what planets are squaring your moon. I want to know if you have touched the center of your own sorrow, have been opened by life’s betrayals, or have become shriveled

and closed from fear of further pain.

I want to know if you can sit with pain, mine or your own, without moving to hide it or fade it or fix it.

I want to know if you can be with joy, mine or your own, if you dance with wildness and let it fill you to

the tips of your fingers and toes, without cautioning us to be careful, to be realistic, or to remember the limitations of being human.

It doesn’t interest me if the story you are telling is true. I want to know if you can disappoint another to be true to yourself, if you can bear the accusation of betrayal—and not betray your own soul.

I want to know if you can see beauty even when it is not pretty everyday, and if you can source your life from its presence.

I want to know if you can live with failure, yours and mine, and still stand on the edge of a lake and shout to the moon: YES!

It doesn’t interest me to know where you live or how much money you have. I want to know if you can get up after the night of grief and despair, weary and bruised to the bone, and do what needs to be done for the children.

It doesn’t interest me who you are or how you came to be here. I want to know if you can stand in the center of the fire with me and not shrink back.

It doesn’t interest me what or where or with whom you have studied. I want to know what sustains you from the inside, when all else falls away.

I want to know if you can be alone with yourself—and if you truly like the company you keep in the empty moments.

—Oriahe Mountain Dreamer, An Indian Elder

I think that realistically I can't say that I personally am good at a lot of the things this poem talks about.  I don't have those sort of qualities or skills as a whole.  But it strikes me that what that poem is more about is about learning to see the positive and to focus on the now rather than the might have beens or the might bes.  About the big picture.

Those are things that I try to focus on and have done for a long time.  They are in no way easy things to do and sometimes when I think I've got there (or rather I'm getting there) I suddenly realise that actually I'm not.  But then I remember this line from Star Trek Voyager (it's from the finale and it's Harry Kim who says it)

When I think about everything we've been through together, maybe it's not the destination that matters, maybe it's the journey, and if that journey takes a little longer, so we can do something we all believe in, I can't think of any place I'd rather be or any people I'd rather be with.

And I've basically just lost the plot of where I was going with this and what I was trying to say!

But...

The short version is that the poem made me think of that quote and that both of them together sum up a lot of what I believe in and my sort of goals for life.  I think that for those of us who live with disabilities and more so with acceptance of that this is what it is force you to learn lessons that are different. There is more to it then that but this entry has turned from the short one I thought it would be to a longer one and I'm tired so I will leave it for now and may return to the topic in future.

Of Phones and Injuries and Feelings

Some weeks I go to sailing with some friends (guy I sail with and his wife).  Other weeks my Dad takes me and the friend who sails.  It works well because it means I get some independance from relying on my parents but I don't feel guilty about asking a lot of friends all the time.  Plus either my Dad or A get to stay home rather than both being dragged out when we all live in the same town.

My Dad's been doing some work on my garden lately and had said that he'd get me in the boat this week (his turn to drive) then go off to homebase to get the stuff.  He reckoned it was half an hour, 40 min job and probably be back not long after I finished sailing if not before.  He also took my handbag with him because he didn't want to leave it in my sailing kit (I only take the bear minimum to sailing and empty the rest out before so wasn't overally bothered if he did).

So I went out for a sail and was out for about half an hour.  Not as long as we expected but not far off - I came in at that point because they wanted the boat for someone else.  It's the first time that's happened since I've sailed solo and several other people have been called in for me so I didn't mind.

Anyway usually my Dad sees me coming and wanders over to help me out the boat.  There was no sign of him but I was earlier than expected and there were plenty of people who know how to help me around so it was fine.

Then one of the volunteers came over and said "Emma, your Dad's not here." and I was all "yeah he's gone shopping I know." and she told me no, my friend had gashed his foot and Dad had taken him to the minor injuries unit and would be back once he'd dropped him off.

So I was a bit freaked out and I was worried about my friend.  But not having my handbag was much more of an issue to me than I expected.  The lack of money to buy a drink bothered me but was fine... I asked the barman for a glass of water and he was all "just water? No coke?" and I explained and he let me have it and pay him back when Dad got back.

Went back outside and chatted to a bunch of people and hung around.  And I was fine.  And I knew I was fine.  That fact I didn't have my phone, however, drove me somewhat crazy.  It made me really anxious.

I was the first of my friends to get a mobile.  I got it when I was 16 a few months before the phone craze took off.  And I got it because my parents thought I should have one in case I ever fell or broke my chair while out.

Over the past 11 years there's been several occasions I've had to use it in emergencies like that (including today when I got a stone caught in my wheel and was moving but couldn't get it out and was worried about it jamming and breaking the chair so stopped and waited till Dad got to me).  There was also one occasion when I had a pay as you go phone, chair battery died and had no credit on my phone (luckily I was on my road and my Dad was coming round twenty minutes later so found me).  I've had a contract phone ever since.  Rarely use anywhere near all my minutes and texts but it's worth the piece of mind.

And once or twice I've been with someone in the pool or a restaurant and had access issues getting back to them - I've used it then if I couldn't get anyones attention.  If that happens I usually just ring their phone then hang up and hope they come looking.

So as much as at times I get annoyed by non stop texts (usually the silly chain texts type things) and all that, my phone is my lifeline and I rarely leave the house without it.  Usually it's either because I forgot it wasn't in my bag or because I have got it but I've missed that the battery died.

Not having it on Tuesday freaked me out a little.  No matter how much I knew that I could 90% guarantee my Dad didn't have his on him and even if he did it would be switched off while he drove.  And I knew that I was surrounded by friends and if anything happened someone would have a phone I could borrow.  But my lifeline wasn't there.  It surprised me that it made me that anxious but it really did.

Thinking about it now if I suddenly didn't have a phone I don't know if I would feel as confident going places as I do now.  I used to in those long ago pre phone days.  But then I didn't know any different.  And more importantly I was a teenager who didn't go as far from home or need to do as much as I do now.

In the end my Dad was back sooner than I expected (I'd just asked one of the others how long he thought it would take to get there and back when he turne up) and all was fine.

My friend is OK too I hear.  But I was slightly amused when Dad got back to the sailing club.  First he had to explain to me exactly what he'd done.  Then two or three other people came over separately to ask if N was OK.  And each time my Dad stood there and explained the injury and you could visibly see that he was making himself cringe with the thought of it as he did so - and the rest of us too.  I am amused by stupid things.

Legacies

I've been thinking about death and what we leave behind when we are gone a lot lately.

Two people in my life, acquaintances really, have died over the last few weeks.  And that, along with the fact that today would have been my Grandad's birthday has had me thinking.

One of the people I barely knew, we met twice that I can think of (although I am sure there are other times when I was much younger).  But my parents knew her better.  Her death was expected and was probably the best thing in the circumstances after years of illness.  For the first time the idea of death as a release makes some sense to me.

The other person I knew for over four years.  I knew them but they were a very private person and kept to themselves a lot.  But we saw each other regularly and I valued their presence in my life.  Me and one other would tease him about certain things and we'd laugh.  Another friend and I would be discussing books and literature and he'd listen, occasionally adding the odd comment in his way.  His death was sudden and unexpected.  I'm struggling more with his death and I'm quite sad about it.  But several us have agreed it was the way he would have wanted to go - he had a normal day then slipped away in his sleep.  No illness or suffering, completely independant to them end.

I think that's probably the way I would want to go too, living right till the end and not knowing it was coming.   In my opinion it's almost the best way to die.   It's the first time I've really contemplated how we die and what happens as such at the time and it's not a particularly comfortable subject.  

But what I've mainly been thinking about is how we remember people after they are gone.  How we explain who they were, what they did and why they mattered.  

I don't know how I would explain who the two people were or even really who my Grandad was.  Because I could tell you.  But to do it quickly and succiently would miss out so much.  And anything I would describe to you would be different to what my parents would say about my Grandad or my friends about the friend who died.  Their families would say different things too.  

And any description or memory I could give you could hurt others who didn't see them that way.  Learnt that one the hard way earlier this week when a friend repeated what someone had said when describing who the person who died was.  Hearing those words hurt.  And as she put it, it wasn't the legacy you'd want to leave behind as a memory of who you were.  But then that person barely knew him.

So all I can say about legacies is that for me I'd want the legacy I leave behind to be that I was Emma and that I mattered.  Because all we ever need to do in life is to love, to be loved (if we can) and to do something that matters.  Make it count.

And I really wish that the two people I know who died recently and my Grandad (as well as my other loved ones who have died) could have that as their legacy too.  But they do.  Because that's how I remember them.  With a smile on my face and warm feelings in my heart and the knowledge that they made a difference and mattered to me.

NaBloPoMo Day 1 - Changing the Blog

I've signed up to do NaBloPoMo this month.  I'm hoping that a commitment to blog everyday this month through this challenge and some other changes I want to make to this blog will do good things.  I've really not been enjoying this blog over the last couple off weeks but hopefully the challenge and the changes will revitalise this blog (either that or kill it off completely, something I have briefly considered) and I will start enjoying it again.

I don't really want to get into the why I haven't been enjoying it or the details of the changes I plan to make but I wanted to record both things here... at least the existance of them.  And the theme for this months NaBloPoMo is "Change" so it's an apt time to do so.

I hope everyone enjoyed Christmas and has as Happy a New Year as is possible for them.  Both of mine were good, especially the New Years celebration last night with good friends.  I've enjoyed the time to rest and be lazy and celebrate with friends and family.  But I must admit to be glad that time is over now and I can get back into a routine again.  Great as it was I do get fed up after a while when I have long swathes of empty time and I'd just hit that point yesterday morning.

Hi. I'm Emma.

I had a new carer this evening, something I suspect will be happening a lot in the next few weeks as my regular carer of the last several years moved away at the weekend.  It went a lot better than I expected, I was very nervous, but it was ok.  I'm looking forward to Friday, however, when I should have someone who last did my care more than three years ago (by my count) but who I always got on well with.  Familiar faces are always good even if there will be a lot of the new carer things like showing where things are as well.  Those are always easier to cope with when I know the person however.

Two things strike me about having a new carer tonight.  One slightly serious, one just amusing.  Neither are specific to this new carer alone, I've had them happen before.  I was just reminded of them by her this evening.  This entry is not intended as a dig at this new carer.  If I ever see her again I think we will get on well.  My care agency do have a habit, however, of sending me someone and I don't see them again for about six months.  As I no longer have a regular it's less likely to happen, IMO.

1) A lot of the clients they go too they give or prompt medication.  I was under the impression that was because a lot of the clients in question can't/won't/forget to take their meds.  Obviously, I self medicate and my carers don't do that for me.  But tonight for not the first time I got asked "am I supposed to give or prompt any meds?"  

Now, fair enough this carer didn't know and it's better that she asked rather than just wondering.  If you ask me however (and you didn't but it's my blog...) that's actually kind of dangerous.  If the reason for the assistance with meds  is due to memory loss or difficulty in knowing when/how to medicate for example (to say nothing of noncompliance) and the carer is sent in not knowing if they need to do this well it's just a mess which could result in either lack of medication or overmedication (either situation could be potentially very serious).  It's a situation which Elizabeth has written about many times with her carers.

Obviously it's a training issue and it is one that doesn't apply to me.  But it's one that really gets my back up because I have some very good friends who need this support and maybe aren't able to advocate for themselves for well.

And that leads me to point 2) of the things I thought of after having a new carer this evening.

Once, a very long time ago, there was a carer sent to me by this agency who didn't know my name - she was sent last minute and just given an address.  Ever since then I've made it a point to tell new carers my name when they introduce themselves.  They should be given an "About Emma" sheet the coordinators wrote before they come (although its crap and very out of date in my opinion) which covers what they do and stuff like that including what you prefer to be called.  It doesn't seem to be getting dished out but to be honest, talking to them about writing my own is on my to do list (tentatively I've heard they won't let me write one to replace theirs but they will let me write an additional one but I need to check that with the powers that be).  I'm not supposed to have read their sheet but I have and it's... amusing. In an annoying sort of way.  Apparently "Emma is a delightful girl who enjoys a chat." I've been campaigning for years to have that replaced with "Emma is a stroppy bitch" but nothing doing.

Anyway just as this new carer was leaving today after being here an hour she went "What's your name?"  All they'd told her was I was Ms Crees.  I could swear I'd replied to her "hi I'm..." with "oh hi I'm Emma" but maybe not.

Still, it's not really surprising that she didn't know what she was meant to do for me with regards to meds (or rather not do) if they didn't even tell her that I'm Emma.

So, just in case there was anyone here who didn't know my name.  Hi. I'm Emma.

Five Days, Done. And Thoughts. And Sailing.

Five days of no coke and no chocolate, done (Gordon Ramsay stylee today).  

It's definitely getting easier although I do feel a little headachy now.  I need to be a little better at pushing water tomorrow.  I've spent a lot of today and yesterday being busy and doing stuff which I'm very pleased about - it makes me feel productive and like I've achieved a lot.  But leaves less time for drinking.  Usually I have a bottle of coke on my desk so I drink without making any effort but no coke means having to go to the kitchen so I don't drink as much or as often.  Something to work on.

The post fairy should be visiting a few people sometime next week. I wrote and sent a few cards this morning.  I love doing that.  It's the first time in a long time I've done a load of physical writing in one go and I'd forgotton just how much it makes my hand ache.  My creative writing class/group should be starting on Thursday and that makes me a little more apprehensive then I was (I had notetakers at uni and a laptop whilst at college and school) but I'm sure it should be fine.

Really would rather be staying at home tomorrow morning to watch Jeremy Kyle and work on my braiding than going to the bureau.  But unless this beginnings of a cold which I've had for over a week suddenly hits me over night, in the bureau I shall be.  I developed a bit of a thing for crappy day time tv and crafts of a morning over the last week or so.

Had a very brief sail this evening which felt brief but probably wasn't.  The sun was setting and it was spectacular.  Must make sure to bring my camera next week.  Technically I am trying to spend more time in the moment than capturing it from behind a lens but sometimes you've gotta get the picture and share the beauty, y'know.

I thought tonight would be the last sail of the year but apparently we will go next week.  It's getting dark so early now though that I suspect that really will be it.  I will miss sailing over the winter months but there also something quite nice about taking the break - curling up in the warm over the winter and chilling out and then seeing each other again, getting back into it and rekindling friendships once spring comes.  

Part of that though is that I know I'll still have my evenings swim once a week ( we're switching to a Tues soon I think) and I start creative writing soon (Thursday this week!) so there will be two nights a week out of the house, like always.  I will miss the people and the sailing during our "off" months.  But I won't be bored and I'll still be plenty busy.

My friends, what I am, what I'd like to be.

I've been thinking about people I know and who they are and who I am and who I'd like to be in and of myself tonight.  Brought on by a couple of things, not least a conversation with my Mum yesterday.

I heard from a very good friend yesterday and that particular friend is a very old friend.  I believe I was eight or nine when we met.  We've not met in person for a lot longer than I like but I still feel very close to her.  Hearing from her always makes me happy and seeing those e-mails waiting for me in my inbox always brings a smile to my face.  I was telling mum that yesterday and she summed it up perfectly "She always was such a gentle person."

I don't think I could manage to be a gentle person, I'm not sure gentle and advocacy go well together and I AM an advocate.  It's something I'm very proud of and most of the time I enjoy.  But gentler?  Maybe that's a goal (but not an easier one) for me to work towards.  I'd certainly like to be able to bring happiness and smiles to my friends with the little things, the incidentals, just like she does to/for me.

Something else I do not want to be is predictable/stereotypical.  Another part of yesterdays conversation with my mum I was sure would go one way - she should know something but  knowing her she'd need reminding.  I also thought my sister wouldn't know the same thing for definite because of how long ago it was and her being seven years younger than me.  But they both did.  Which was a nice surprise.

Then today I had conversations with people which were predictable.  In fact tonight before one of the conversations I said to Dad I wanted to talk to this person about X and then went "but of course they'll pretty much say this." and he agreed with me and then pretty much word for word they did say exactly that.  Predictable is comfortable, it's safe because its the same and you know what to expect.  But it can also be a little boring and frustrating too especially when relying on someone for something and needing them to do it differently but getting the same old, same old.  I'd probably be thrown off if this person did ever change though... like I said, predictable can be comforting and tonight part of me wanted to say to in response "don't ever change."  But I didn't. (as an aside, Firefox's stupid automatic spell check doesn't like words with apostrophes in any more.  Weird.  I like it even less now.  Anyone know how to either turn the damn thing off (preferably) or change it so it's not bloody american?!)

So I was thinking about all that and wondering how people view me, am I predictable?  I am, I hope, not a stereotypical crip.  But I'm not sure I want to be predictable either.  I suspect, however, that we are all slightly predictable in a way.  I suppose what I want to say or what I'm trying to say is that I want to be independent and free and I can't think of exactly what I mean.  Basically only a little tiny bit predictable.  It's not always an easy thing to achieve and there are/will/have been many bumps and twists on that path.

This entry is not easy to write.

Also I have many "not really my sort of person" people in my life, people who I've crossed paths with but if not for fate or whatever forcing us together probably wouldn't have chosen to spend time with or even met in some cases.  Perhaps describing them as "not really my sort of person" isn't right.  People who I wouldn't necessarily have picked out of a "potential friends" set up because we come from vastly different backgrounds, life experiences/expectations etc but who have done a lot for me, and come to be good friends.  A lot of those are either PWD or people (usually TAB) who originally came into my life professionally because of my disability.  I guess what they say about disability being a great leveller of playing fields is true.

The ability to reach out to someone and give them something, sometimes even things they didn't know they wanted or needed or were missing from their lives and make such a difference is huge.  I'd like to do that for others if I could.  Pay it forward, as they say.

Lose Sight of the Shore

This is the 700th (public) post on this blog. The post below is a paraphrased version of part of what I wrote in a card to a good friend. As she received it yesterday I will share the thoughts here. It's not word for word as I didn't think to note them down before I sent it.

***

"Man cannot discover new oceans unless he has the courage to lose sight of the shore." ~ Andre Gilde

The above quote came to mind a lot when we were at Rutland Water a few weeks ago for the regatta. Not the exact wording, I had to look that up. But the words "lose sight of the shore" and the meaning behind them. Rutland is a huge reservoir, it's 26 miles around if I recall. It's substantially bigger than my "home" reservoir, Farmoor. By the time we had sailed out to the race area we'd probably sailed the equivalent of to the opposite side of Farmoor if not further.

And there were one or two occasions when I would look out from the racing circuit and have to take a moment to work out exactly which way the shore we had launched from was and which of those beaches had my wheelchair. I'm used to one beach so hadn't paid too much attention when they said about remembering where you launched from. You go all over the place racing, following a circuit and doing laps. So I got a little turned around.

It wasn't scary it was just more than I had been accustomed to in terms of distance from things. And it wasn't my usual place or set up. I had briefly "lost sight of the shore" in some ways. Literally a minute or two of thinking of it and I knew the answer. And I thought of that quote.

But that weekend and all the sailing involved made me push myself and expand my horizons a lot. I've never sailed for that amount of time in one go before. I've never been out in that much wind before. I'd never raced before. I'd never seen that many challengers all at once before. I've never gotten so wet or flew through the water so fast before. And I thought of that quote.

It was fun. It was hard work. It was tiring. It was scary. But most of all, it was worth it. And I thought of that quote.

I got so much out of it. I discovered my "new oceans" and I'm glad I did. But only because I had the courage to literally and figuratively "lose sight of the shore."

That quote isn't just apt for me for that one weekend however, I think it's true of a lot of things I've done this year and things I plan to do with the remaining months, weeks and days of 2008.

***

EDIT, Tuesday: It is well worth reading the comments on this, I really feel like people commenting have understood and furthered what I wanted to say

Things to Think About.

It was really nice to see Auntie Sheila and everyone this afternoon and I did feel a bit more cheerful when I was out.

I think part of the blah down-ness might have come from the fact that I've not done very much of anything other than computer time, knitting and a bit of reading over the last few days.  I definitely couldn't have been in the bureau this week.  Overdoing it at the weekend and then spending a lot of time at home recovering is not a good mix for me mental health wise.  I guess those two mornings a week where I'm in the bureau do make a difference to me after all.  I knew they did but I didn't know it.

The stupidest thing about all of that is that out of the seven days since I came back from the regatta I've had three days where I've done propery stuff, two where I've done bits like go to sainsburys and only one where I have been at home all day.  I guess it comes down to what you're used too and truly an hour out and the rest of the time at home, usually alone (days I went to sainsburys) isn't great.  I'm used to MORE.   Doing and being MORE is what makes me happy.  But I couldn't have managed MORE this week.

Is that what they call Catch 22?  I've never been able to get my head around that much as I'd like too.  Several people have tried repeatedly to explain it though.  And talking of that, I think that might be one of the next books I read its been sat on my shelf for years.

Time for a paradigm shift me thinks.  I'm not sure how I'm supposed to do that though.

This next week is going to be pretty busy I think so that should shake some of my blues away.

When I was talking to Auntie Sheila earlier we were saying about how there are some very lonely people in this world.

I would never have said that I was a lonely girl.  But then thinking about all this this evening and that conversation and everything that goes with it, maybe I am?  I'm never bored (or not usually) because I have plenty to do and plenty going on around me.  Maybe, just maybe, all of this comes down to a touch of loneliness though?

Something to think on.

Unnecessary Reactions

It's weird how the smallest things can just make you react.  And then afterwards you (or I in this case) stop and think and wonder just what it is that made you react that way.  Especially when there was no need to in the first place nor any sign that there might be.

When I got off of the train in Oxford today, Julie asked if she could have a word.

And that was it.  I started panicing.  As I was wandering over the platform and through the barriers, accross the concourse and outside the door where we stopped to chat I was thinking "oh my god what have I done wrong."  "Argh I hope she isn't too mad with me."  "I'm gonna start crying if this is a big deal" "argh argh argh".

It was nothing of the sort (she'd heard I'd been upset a few weeks ago and wanted to know if I was ok).  I'd had nothing to worry about but as soon as she "wanted a word." I panicked.  It's not the first time over the last few months that someone has said they need to talk to me or some such and I've reacted like that.  I don't really understand why I do it but it seems it's some sort of inbuilt thing, part of what makes me "Emma".

Something that needs to stop.

Appearances

A couple of people I know have briefly met one of my neighbours a few times - times which had nothing to do with me.  The result of that, however, was that when I first moved in here they warned me about him - said I would need to be careful around him and made sure I knew certain things about him - things that sort of made it seem like he is not a good person.

Well, appearances can be deceiving.  Because he's not someone I'd spend a lot of time with but he's a perfectly nice guy, he's approachable and he's helped me out a few times.   We stop and say hi and a bit of small talk when we see each other.  And that's more than I do with any other of my immediate neighbours.

That's something I'm very grateful for as I sit here writing this.

There's been a lot in the news lately about Blue Badge Fraud and about the badges being stolen and all sorts of stuff.   And I've spent most of yesterday and up until half an hour ago with a pit of dread and a sinking feeling in my stomach.  Because I had lost my blue badge.  I found it out before Dad and I went to Tesco.  We got to Tesco and I no longer had it.  Shit.

I was beginning to think if my carer didn't find it tomorrow (there being one place left to look and it not being somewhere I could get) I'd have to jump through all six thousand hoops involved in getting a replacement ahead of schedule.  Including getting a crime reference number from the police.

It wasn't on the path outside here, in my Dad's car, my bag or on the side where I'd put it ready to go shopping, or on the floor by it.  It was lost.

I'd begun to suspect that it had been dropped outside and that someone had picked it up and kept it - because that's what has been happening a lot lately - with blue badges exempting people from the Congestion Charge in London and giving various other benefits they've been selling for up to £200 on eBay.

Anyway, I was - thankfully - only partially right.  I had dropped it on the grass outside.  But my neighbour - the one with the problem, the one I was warned to avoid? he found it and he brought it back to me.

I know there are people out there who have the same issues he does who aren't nice people and who I should probably avoid - I've met a few of them.  He however makes me glad I gave him a chance and looked past the problem.  And thinking about it, really, his problem, is just another form of a disability (although I'm sure he wouldn't agree with me on that).

Customer Service

I moan a lot about poor customer service.  Or at least that's what I seem to be doing lately.

And at 11.11 this morning I sent an e-mail to my housing to check what was happening about a couple of things.

At  11.18 I put the phone down having spoken to one of their people, gotten the ball rolling on one of the things and the relevant paperwork for the other put in the post to me.

When I answered the phone and she said "hi Emma?  it's so and so from such and such." I was just like "but i just e-mailed you less than five minutes ago."   and she also apologised for the incorrect information I had previously been given.

I don't think it was as heartfelt as when Chris messed up and then apologised to me a couple of weeks ago BUT at least she didn't tell me that it wasn't her job like I heard on Sunday.  That said, Chris actually knows me and (I like to think) that I'm not just another customer to him - because he assists me on a regular basis.

That's what I call a quick response... and also GOOD customer service.

Thinking

I've been thinking a lot about perspective lately.  It's been coming into a lot of things and I was going to write an entry about it.   But it's been coming into so many things that I no longer think I can write an entry about it.  If I'm going to do it justice it's going to have to be a series of entries.

A lot of things come down to perspective in the end; I'm only just realising just how many.

And also another thing that has been consuming my thoughts (although this time only since yesterday) is the concept of honesty.   As a society it seems that we aren't very honest any more; that we are encouraged and even expected to hide our thoughts and feelings, even hide who we truly are.

That's not what I am.  It's what I used to be until I was 20 or so but not any more.  Or at least, not most of the time.  It was worse up until I hit 16 but it took until 20 to truly leave me.

This week a lot of it's been back with me.  Because I saw, and spent a couple of hours with, a person I've not seen since then - a former teacher of mine.  And some how, for some reason as soon as I was with her I was that downtrodden shy 16 year old once again. It's not something she said or did, it just happened.  I'm not sure where the confident, mouthy, loud almost 26 year old has gone but she's been MIA ever since.

I keep seeming glimpses of her briefly but then 16 year old who lacked confidence and didn't know how to share her opinion or put herself first comes back.   Hopefully confident, outgoing, mouthy Em will return soon.

Because this sucks.

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.