>REPOST: I’d of Had To Miss The Dance

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Another of my older pieces of writing to share this evening. This was originally written at the beginning of December 2004

I’d Of Had To Miss The Dance

I have Cerebral Palsy (CP) or to give it the exact diagnosis Spastic Cerebral Palsy Diplegia. I’ve had it my entire life and I’ve had to use a wheelchair to a certain extent my entire life. I think I find it relatively easy to deal with the majority of the time because I have never known any different. I’ve known what it’s like to be able to walk a slightly longer distance than I can now but I’ve never known what it is like to run or jump/ I have known what it is like to be able to walk without the fear of falling over and hurting yourself that I sometimes feel when walking in crowds now. But that was when I was six years olds and all six year olds are invincible, nothing will happen to them, they won’t get hurt. Or so they think.

Now though I am 22 and I know I’m not invincible. I have suffered the scraped knees, bumps on the head and suspected broken bones that can result from the falls which are a part of day to day life if your balance is as bad as mine is. But I don’t let that fear stop me. That fear is a very healthy thing for me, I believe, but only because it doesn’t stop me. Instead it keeps me safe to a certain extent. Because I choose to deal with my CP by being very upfront about it, by viewing anything that can help me as a good thing and simply getting on with it.

Until I was 17 I used to walk the short distances I can handle unaided and spend the rest of the time in my wheelchair. I would grab onto the walls, the furniture or other people who happened to be around whenever I felt I was losing my balance. But I would always be too frightened to walk very much even though I wanted to in case I would fall so I would pretty much be in my wheelchair unless my parents or someone else in authority insisted that I walked. Then at 17 I got a rollator (walking frame) again for the first time since I was five or six. I also took a few minutes to explain to people that would be around me when I was walking about my limitations – to make sure they knew not to cut infront of me suddenly (I can’t stop suddenly without falling although my walker helps a lot with this)., to make sure they knew that sometimes i do just fall for no apparent reason because that is part of what CP does. And I wouldn’t say that I’ve completely gotten over my fear, I’m still nervous the first few times I walk in a new place or if I don’t feel 100% well. But with that walker and by telling people about my CP and my walking I am able to feel that fear – but do it anyway.

When it comes to acceptance I believe that I’m as close to fully accepting my disability as I ever will be. Like i said above, i have never known anything other than having CP and although my condition may appear to others to have gotten worse, it is not something I have had to struggle to accept because that deterioration was something I choose to allow to happen and I know that in a way it was a good thing. I began to use my wheelchair so much more because it allowed me to do more, I didn’t get so tired and I could get to classes at uni quicker. The problem that has come about as a result of that is that I can no longer walk as long distances as I used to be able to. So it could perhaps be said that my CP is worse. But I know that it’s not really, and I know that if I worked at it I could get it back to a certain extent. I am working on my walking to make sure I don’t lose the amount that I still have and I’m trying to gradually increase the number of times a week that I walk short distances. However I’m also a realist and I fully realise that my CP will never go away and there will always be decisions to be made and opportunity costs to weigh up about the way I live my life with my disability. So walking will always be very tiring for me, will make my legs hurt after a few minutes and be slow. Using my wheelchair solves most of those problems for me (and if i use my powerchair the speed problem is solved too) but the cost is that sometimes I use it when I could walk and then I gradually may lose some of my ability to handle distances walking, i may have more pain or i begin to walk slower. But if I’m not so tired and I can live a fuller more active life simply by spending 95% of my time in my wheelchair then it’s a price I’m willing to pay.

I think that shows how much I have accepted my disability, something whihc some others might not understand me saying. I know some people who have CP and walk all the time with a mild limp or poor balance or whatever who say they hate having it and I think that maybe that stems from how well (or not) they have been able to accept the hand that life has dealt them. Obviously I am not in any position to be able to judge people and say for definite that is why but from my experiences and what I’ve seen I would assume that is why.

I use humour in a lot of situations as a way of helping to deal with it. I can’t remember the exact quote but I once read something which said the one way to definitively take away the power tha insules and derogative terms have over you when someone tries to use them to get at you is to use them yourself. If i refer to myself as a spastic or a cripple it isn’t hurtful any more and even if someone says it to you meaning it to hurt you it won’t – it’s lost its power and it once again appears as just one little word which can’t do anything to hurt you. and that’s how it should be.

But my using terms like spastic and cripple for humour (like telling my sister I was a club class cripple today because I got upgraded to club class on the train) is something which most able-bodied people don’t understand. One of my counselors decided that it was a self protective mechanism that really the terms are hurtful to me and I must hate them i just pretend to find them funny as a way of avoiding having to feel that pain. she couldn’t accept that that wasn’t the case and so I never went back to her again.

The last time someone called me a spastic and actually meant it as derogatory (my sister called me a spastic for a joke the other day), I just smiled at them and said “that’s right I am a spastic, I’ve got that form of CP.” and they were just completely thrown off by that.

Spastic. S P A S T I C. Cripple. C R I P P L E. Two words which are meant to hurt me, which are meant to upset me. But do you know what both of those words represent to me… seven little letters in each of those words which spell out a whole lot of fun and laughter.

I’ve said it before, and I’m sure that I’ll say it again. Political Correctness sucks… humour and laughter are the only way forward. Because there are times when if you didn’t laugh about all the rubbish that life with CP throws at you, you would cry and I’d much rather spend my days laughing than crying!

Of course there I would be lying if I gave the illusion that there aren’t days when it gets me down and I need a good cleansing cry to get it out of my system. But those days are now (thankfully) rare and the giggles far out number the tears. I think you need to have the down days because how else would you appreciate the good days if you didn’t have bad days to compare them too? I really do believe that you don’t know what you’ve got till it’s gone.

If i was ever offered the chance for someone out there to wave a magic wand and make it so I had never had CP i would turn them down. It’s been one of the most formulative experiences of my life – I like who i am and I wouldn’t be the girl who sits at this computer writing this if I wasn’t disabled. CP is just a part of my life, it’s a very important part of my life which I’m proud to have, but it doesn’t rule my life totally it just influences it – for the better I believe. It’s like I wrote in my CP Rocks poem, how would I be me if I didn’t have CP?

I think a lot of people can understand that. Everyone has painful or difficult experiences which at the time you wish hadn’t happened but afterwards time brings the wisdom to see that they had to happen for them to grow as a person and become the person they are today. What I think a lot of people would have difficulty accepting is this…

If I found a magic lamp, rubbed it and out popped a genie offering to grant me three wishes like in Aladdin and suggesting that one of the wishes were to make it so I had had cp up until this point but that I no longer had it and from this day forward I would be able-bodied, I would turn him down.

I like who I am – wheelchair, muscle spasms, back pain and all – and I wouldn’t want to change it for the world.

So many things I have done and people I have met I wouldn’t of had the opportunity to do or meet if I hadn’t had CP and so for that I am grateful that I’ve got it.

I think Garth Brooks said it best in his song The Dance

“This life is best left to chance

I could have missed the pain

But I’d of had to miss the dance.”

>Wake Me Up When September Ends…

>OK so it’s tacky as hell but I just had to get that title in for a journal entry at least one time this month.  And it’s apt today because I feel like I have very little energy.  I did start taking the Abx this morning and I also spent most of it in bed.

Today is the check in day for the Healthy You Challenge run by Scale Junkie and this is my first week as a member of that challenge.  And before I’ve even updated for it or anything some people have already come by and said Hi so thanks for all the messages.  I’m looking forward to getting round some of the blogs and meeting some new people.  Some inspiration and support would definitely not go amiss either.

Having lost 2lb last week (and 2lb in total, last week being my first week) and with knowing that I’m unlikely to do great this week due to feel grotty my goal is to remain the same weight.  I do plan to try to stay really on target over the next couple of days but it’s not easy when you don’t feel good.  Even though I do feel better than I did.  Maybe a few days more on target would mean I could lose another lb by the time I weigh on Friday but I’m not holding my breath…

Plans for next week?  Get some exercise in starting Saturday or before if I’m up to par before then.

Thanks for the welcome to the challenge and for the messages guys, it’s really appreciated – and helpful too.

>Slightly Sick But Lucky

>I’ve been feeling off all weekend and last night was absolutely convinced I had a UTI (I used to be the queen of them).  My bladder and that area was that painful.  But thankfully a trip to the nurse this morning reveals that whilst I am symptomatic nothing is showing up.  And my temp is fine so there shouldn’t be something else making me feel like this.  So I’ve antibiotics to start taking if I still have pain this evening or tomorrow morning.  The nurse (nurse led minor illnesses clinic) checked with the doctor and basically with my history and those symptoms…

I still feel off but I feel a lot better knowing that I pretty much don’t have an infection – after six in seven months in 2003/2004 which were only cured by four months of 50mg daily nitrofurantoin –  getting those symptoms to that extent makes me anxious.  Lots and lots of fluids and some cranberry extract for me today it seems.

It’s a wheelchair thing and it’s not good.  But I heard some stuff yesterday that reminded me that even as a CP-er I am very lucky and if being prone to UTI is to be my non wheelchair major CP issue then so be it.  A lot of people have it worse than me.

Still, the weekend was fun other than that (but that’s a whole ‘nother entry…)

>Progress Report

>I lost 2lb this week.  Which makes all the effort worth it.

Only I’m not 100% sure that I actually did lose 2lb this week.  I can’t stand unsupported but i literally had one finger on the grab rail in my bathroom and someone stood behind me just in case I went.  The scales couldn’t make up there mind how much I weighed but taking the highest of the numbers it flickered between I’ve lost 2lb.

Oh and my snazzy spreadsheet I set up (which actually does work, it seems) tells me just losing those 2lb dropped my bmi 0.3 points and I nearly lost a whole kilo.

I’m pleased, CP frustrations aside.

And after five updates to this blog in two days, I think I will leave well alone for a while.

>Goodbye

>I’ve never been good at goodbyes.  When I was little I would cry leaving my Grandparents house or if I didn’t get to wave goodbye to my Dad when he left for work.  I got better.  But I would always, always cry when I knew it was a long term “goodbye” be it weeks, months, who knew how long or possibly forever.  The end of a holiday or something I’d look forward too would make me said and I’d cry.  I’d always cry when it came to going to uni for the next term and usually when it came to leaving my friends and carers  at the end of term too.

Even if I was/am really pleased for the person I was saying goodbye too or looking forward to being left to stay with my Gran and Grandad or the next term at uni or whatever I’d be there crying saying “i’m really pleased for you” through my tears.

I remember when a really good friend of mine from uni left I was shocked that I got though the goodbye without crying – and so was my mum when I told her on the phone the next day.  We’ve kept in touch and I knew we would.  But it was a long time until I saw her again and I knew that as we said goodbye that day.  But somehow I didn’t cry.

I still find goodbyes hard though and cry at the tougher ones.

We had a presentation this afternoon to mark the leaving of a volunteer whose been involved in the swimming group for an astounding number of years.  I knew he’d been there a long time but had no idea it was that long.  He’s been a great guy and he’s involved in some other stuff I’m involved in (although I didn’t know him before I joined the swimming group four years ago).  He’s done a lot for me and I will really miss him.  So it was pretty emotional but I was hoping to make it through.

But then I looked at him and he was looking a little emotional.  And turned away to stop him setting me off.  It didn’t work.  I turned and saw the person sat opposite me had eyes full of tears and was dabbing at her eyes wiping them away.

It became a very tearful goodbye for me after all. I was chatting to another friend whilst I was crying about how we will miss him etc and she hugged me and I calmed down.  But then I went up to him as I was leaving  I gave him a hug, thanked him for his help and told him how I appreciate it.  I told him I will miss him.  But all through I had tears streaming down my face.

And I’m still tearful now.

But, emotional though it is and all that jazz, I’m glad we had the chance to honour our friend and show him how much we appreciate and love him.  Even if it took his leaving our group for us to do so.

>Creative Writing Prompt: I Remember…

>Creative writing last night was really fun.  We did this ten minute exercise where he gave three prompts and then you just wrote for the time involved without editing, second guessing yourself, worrying about spelling or grammer and with enjoying it.  The basic idea being “do or do not there is no try.”  I found it slightly frustrating because I type fast and my brain moves at my typing speed when writing.  But I was writing long hand and couldn’t get everything I wanted down in the time.  I know that’s worrying about it and he said not to but it’s a physical (CP) thing rather than a writing thing.  Perhaps time I got a laptop or alphasmart again.

I chose the prompt “I remember” and this is what I wrote.

I remember the first time I went sailing.  I didn’t really want to be there but a now good friend had spent a year telling me how I hd to go.  How I would love it.  Eventually I said I would go once but on the condition tht he shut up about it if I didn’t go back.  I felt nervous and even more so when I asked if they’d oked it with the organisers and was told “no.”.  But we got there and everyone was lovely.  Pleased to see me, welcoming and friendly.  They found me a big orange lifejacket and showed me how to put it on.  It was bulky and a little uncomfortable and reminded me of the ones you see on cruise ships.  Three people surrounded me and lifted me out of my chair into the boat.  Don’t worry they said, Terry’s coming with you.  Leaving my chair behind made me wary but I was excited now I was there and it was happening.

It’s not the ending I had in mind for the piece or they one I would have had if I were typing it originally (typed that in about four minutes probably less) but reading it back now it seems to work.  It’s “as was” last night apart from editing typos I made as I transcribed it and changing a couple of short hands to the full word (w/ to with mostly)

>So spoke the Book of Emma

>In the bible it says “And on the seventh day he rested” or some such crap.  However in my life that’s now been changed to “And on the seventh day of the diet she ate the chocolate and drank the coke.”  So spoke the Book of Emma.

Oh and I got my Quickie back after it being out of action for basically the whole of this month (actually, I think it was the end of August when it broke).  It looks GREAT.  And having it back feels great too.  The Quickie logo on the back is different to the one that was on there but I need a properly look at it.

No more crappy heavy wheelchairs to use and other crappy wheelchairs cluttering up my kitchen 🙂

>Random Stuff

>Yesterday was a strange day and today is a bit weird too.  Mostly because I don’t feel well – not sick but in pain and off.  

I felt better yesterday after getting to rant at two different people and I managed to avoid the emotional eating that had nearly occured.  So overall yesterday was a pretty positive day even if it didn’t feel like it.  Twice I wanted to “throw my toys out of the pram” at someone and didn’t.  I’m pleased about that because it is something I’m trying to work on.  But equally I think things probably won’t change there until I do say/do something and so I must find a way of doing so calmly and quietly – gently, even.  Also, I can’t deny that part of me wishes I had thrown the fit I wanted to because it would be resolved.  And having it resolved would be a good thing.  Throwing a strop however, probably would not have resolved it without long term repurcussions and that would suck.

I did buy coke and chocolate today when I went to sainsburys – yesterday was day six without – and so far I haven’t touched it and part of me wonders why exactly I bought it.  Yes, I feel kinda lousy but it won’t make me feel better.

The creative writing course starts tongiht, I need to find the thing out and check what time it starts.  I’m really looking forward to it but I think first I must take a nap.

>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.

>Day Three (in the big brother house)

>OK so it’s not the big brother house but whenever I think about what day I’m on in my healthy eating I always hear it in the way they say it on Big Brother you know that geordie bloke – “Day Three” – despite it being several years since I’ve actually properly watched Big Brother.  I’m keeping on keeping on and that, really, is the best I can say about attempts at health today.

Oh actually I know what I wanted to note and that was that I had anticipated being headachy and grouchy today as a cafeine withdrawal thing, it usually kicks in as bad as it’ll get around day three which is why I gave it up with a Thursday as the last day so that if I had to feel lousy I would feel lousy on the weekend.  Here’s hoping it doesn’t prove me wrong and hit me tomorrow or Tuesday because I will be a busy girlie those days.

I spent some time reading the early archives of PastaQueen‘s blog earlier as an inspirational or encouragement thing (not sure which) when I was really wanting, instead, to go to the shop for treats.  What I really want now, however, is her book.  And hearing my sister (who is sick with a cold) go on about how much she wanted chocolate on the phone earlier didn’t bother me too much either.

Baby steps.