Sunday, 27 December 2015

Dressage without Rolo!

At the beginning of December, I took part in my first able-bodied dressage competition (not counting the club one in February). It was an unaffiliated event held at Milton under British Dressage rules and eight of us from CURC were competing, ably assisted by some very helpful grooms for the day!
A chilly winter lesson at Milton on Rolo.
For the first time, I was to compete on Boysie, a new horse at RDA who lives at Milton. He's still very young, and I'm not up to containing his canter yet, so we were entering two different 'Intro' level tests, both of which only required walk and trot. There were two main reasons behind foregoing my usual choice of Rolo in favour of Boysie. Firstly, Rolo is particularly strong at the moment (/I'm a bit weak...) and so achieving any accuracy in downward transitions is nigh-on impossible. Obviously this doesn't really matter so much for jumping at my level, but in dressage you really have to be in full control the whole time! Fortunately, Boysie is very responsive to the aids for both upwards and downwards transitions, meaning that I don't have to push my body too hard to achieve the movement required from Boysie. Secondly, although he is young and 'just' a cob, he is really responsive to weight aids, which is very useful for me given that I struggle to use my legs and hands in a conventional way. For example, I can achieve bend or straightness with gentle shifting of my weight in the saddle or down into the stirrups. I can't fully control this either, but it's a lot easier than the more basic aids.
Beautiful Boysie, being ridden by Olivia at RDA (me on Rolo behind them!)
Although it had been entirely my choice to ride Boysie (and I had insisted on it!) I was still slightly anxious about the competition. It was to be held outside, and I'm always a bit anxious about being outside with all the distractions, especially with a young horse who I don't really know all that well and who is relatively untested. The first couple of times I'd seen Boysie, he'd been quite unsettled and nervous (probably because he was new to the yard) and although he had settled down since I still remembered my first couple of lurching rides where he swung between being ridiculously sensitive to my leg and ridiculously sensitive to my hand. Fortunately, I had had a chance to ride through both tests with Gillian, who is both my dressage guru and also owns Boysie! This had made me feel much more confident that I knew how to get the best out of him throughout the tests, but the run-through had been indoors so I still wasn't sure how excitable he would be first thing in the morning, outside in the wind, and all dressed up looking smart. I suppose I was going from my terrifying experiences with Rolo at Oaklands! I knew I wouldn't really know how he would react until we were actually in the ring.
Few horses need much encouragement to push their luck...
With the help of other wonderful CURC members, Boysie was soon looking spectacular and ready to go. After a bit of difficulty getting mounted (he didn't want to stand too close to the scary mounting block) I was on board and gently warming him up in the indoor school. He felt fairly sprightly but nothing like Rolo does first thing on competition day. This gave me some confidence! We didn't have a huge amount of time to warm up before going in, so I ran through the test quickly in my head and did plenty of trot circles and lots of transitions between halt, walk and trot.
This is a good view of the ears whilst warming up.
Soon it was my turn! We walked into the arena quietly, after a minor issue with a big puddle outside the entrance that none of the horses wanted to walk through. We walked around the outside of the arena, then picked up trot above the A end and did some more circles whilst we waited for the bell. When the bell rang, I employed my lesson learned at Hartpury about making the A-C turn well above A so that you enter the arena straight. It was a nice straightforward start: enter in trot, proceed down the centre line without halting, and then get on with it! I spent the test focussing on accuracy, keeping as good a position as possible, and preparing Boysie for transitions in advance. I was quite pleased with how it went, but came out thinking of all the other things I should have done: kept my head up more, prepared Boysie even better and earlier, focussed more on straightness, getting a really solid long rein walk, and so on. Still, at least I had another chance to work on those things!
Trotting down the centre line.
We had a fair bit of time between tests so I took Boysie back to his stable, took his bridle off, loosened his girth, and popped his rug over his saddle so he could have a bit of down time. In the meantime he had quite a bit of fuss! There wasn't a huge amount of time before the next test, though, so fairly soon I was getting back on board to warm up quickly before the Intro B test. This time, I was determined to keep the accuracy but improve upon my general style of riding. I concentrated so hard and tried to prepare everything well in advance. I felt that I did ride much better, although I'm not sure if that actually translated into Boysie performing better!
Part of a 20m circle.
After my second test it was time to untack Boysie, give him a good brush down, and finally give him his haynet. He'd behaved absolutely impeccably throughout, so my concerns about young horse in windy and noisy outdoor arena proved to be unfounded. I was so proud of him and so delighted that I would be able to tell people at RDA (especially Gillian) that he had been such a good boy.
Attempting to stay straight into the halt - could have gone for a smoother transition though.
After he was all rugged up again and tucking into his delicious hay, I suddenly realised that it was time to relax and enjoy watching the others. I went and called a few tests (we were going for having callers just in case we forgot the tests - we mostly knew them but you aren't penalised for having a caller so it's a no-brainer really). I quite enjoyed doing this, although I felt awful when a big gust of wind took my shouted instructions away from Kirsty at a critical moment, and she had to circle round to try again.
Kirsty and Dan in their Intro test (photo taken by my mum!)
Other than that, I took some photos and generally just enjoyed watching the Cambridge riders perform so well.
Chloe looking stunning with Tisco.
Even when Darsh came into the arena saying that she didn't want to do the test, she still ended up riding it beautifully. This served to confirm something that I've had cause to experience on a number of occasions: that if you think you can't do something, you only find out by trying - and then you might just surprise yourself. It's how I felt at Oaklands, and it's how I felt after the Cambridge Regatta too - as I wrote in September,  'It reminds me that when I have those times of 'I don't want to be here' or 'I don't want to do this' I just need to give myself a kick up the backside and do it anyway.'
Darsh's halt and salute at the end of a beautiful test.
Whilst the Prelim level tests were taking place (one level up from Intro; includes canter work) Kirsty went to check on the results. Being achey, tired and a bit lazy, I opted to stay at my seat at the side of the arena, watching the others. Soon Kirsty returned, saying, 'I think you'll want to go and see your results yourself.' She would not explain in any greater detail, so I lumbered down to the hut where the results and scoresheets are laid out. There were two scoresheets, each with a red rosette pinned to them. I was genuinely astonished and didn't believe Kirsty when she said that they were both mine until I'd picked them up and seen 'Lizzie Bennett - Boysie' on each. For those of you unfamiliar with the rosette colour system, it goes: purple for 6th, pink or orange for 5th, green for 4th, yellow for 3rd, blue for 2nd and red for 1st. Boysie and I had won both of our classes! Funnily enough, it turned out that my extra effort in the second test had been to no avail, as I scored exactly the same mark (66.08%) in each - although I did get one more point for collectives the second time round!
Feeling as if Christmas had come early, I stayed and had a nice chat with one of the non-CURC competitors. He'd been in one of the Household Cavalry divisions before a serious leg injury from a fall, and now trained horses for a living. He was really friendly and fun to chat to. It's nice to make friends! He had done one Intro test, in which he had come third behind me and Kirsty, and one Prelim test, in which he came third again. We were able to have a look at all the scores from the Intro tests, and it was great to see that all CURC riders were placed (i.e., came in the top 6 and went home with a rosette). In addition, Tamsin and Rosie both came fifth in their respective Prelim classes. This is a huge achievement, as the Prelim classes are much more competitive than the Intro tests. Not a bad day for CURC at all!
After picking up my rosettes, I went to show Boysie the fruits of his labour, although to be honest he was far more interested in his haynet.
I also texted John and my mum, who had both come to watch my tests but had been sent home by me after I was done, on the basis that it was cold and they wouldn't be as interested in the other riders as I was. I was really grateful to them both for turning out to support me yet again. After we had finished grooming, feeding and rugging up the horses we headed to Penny's house for the team Christmas party and Secret Santa present distribution! I had bought Chloe a book of medieval horsemanship (like me, she's a medieval geek), and I received some lovely horsey Christmas decorations from Helen, which resulted in this Christmassy display:
Featuring John's prize for winning Fairbairns.
Later in the day, I emailed Gillian to tell her what a good boy her horse had been and to pass on some of the judge's lovely comments about him, including: "What a lovely genuine horse - he has correct paces, just lost some activity and suppleness in his work. Quietly presented." and "Your horse tries very hard to please, correct walk and trot, just loses some activity and suppleness to inside bend. Could soften a little more to outline. Quietly ridden." These are really useful comments to work from and I was glad that they spotted what a sweet nature he has.
So, as is customary, time for the thank yous! Firstly, Kirsty organised all this and it was a hellish job for her. I helped in a very minor way by creating some numbers for us to wear, but she did all the difficult stuff. She's pretty amazing really. Secondly, thank you to Gillian for arriving at RDA very early the week of the competition so that I could have a chance to go through both tests on Boysie with some expert feedback - and also thanks for telling Milton that I was perfectly capable of riding Boysie and didn't need to be on Rolo! Next, thank you to our CURC instructor, Fiona, for all the help she's given me in my riding this term. I've got so many things to think about and whilst I usually fail to remember them all (or even most of them) I hope that with time they will sink in! Fourth, thank you to my mum and John for being supportive. It honestly makes a difference to have you there, even when poor John was half asleep after a highly succesful previous day racing. Fifth, thanks to all the CURC Intermediate team riders who pull together to help us all out. People are particularly good at helping me get about, and helping with grooming, tacking up, mounting, and the like. Being part of a team is something I really value. Finally, a big pat and hug for Boysie. He won't read this but perhaps if you know him you can give him a carrot next time you see him. What a good boy!

Monday, 21 December 2015

The Paralympic Games and the Myth of 'Inclusivity'

When you think of the Paralympics, what comes to mind? Well, I have a different view of it to most people, so I thought I'd google it to see what other people think. Here are some of the main ideas which came up:
  • "It is an event that demonstrates inclusivity at the highest level... Through elite sport I believe we can get people to reappraise their attitudes towards disability, surely the start point for any societal change."" - BPA Chief Executive Tim Hollingsworth, 2011
  • "This year’s theme is "inclusion matters: access and empowerment for people of all abilities"." - IPC President, Sir Philip Craven, 3/12/15
  • "The Committee was conscious in considering participation that, above all, sports should be inclusive. In the context of disability sport, this means that all sports, beyond those which are also Paralympic sports, need to be accessible." - House of Lord Select Committee on Olympic and Paralympic Legacy, 2013-14.
  • "ParalympicsGB is non-discriminatory and applauds all disabled sportsmen and women who achieve on the world stage." British Paralympic Association (BPA)
  • "The Paralympic Games are a unique and fantastic opportunity to showcase disability sport, and therefore we would not support any campaigns to boycott the Paralympic Games. Instead we believe that, through inspirational performances on the field of play, we can best demonstrate to disabled and non-disabled audiences what can be achieved." - BPA
  • "At the International Paralympic Committee (IPC) we aspire to make for a more inclusive society for people with an impairment through para-sport and, in my view, the Paralympic Games are the greatest showcase on earth of inclusion and empowerment in action. Next year’s Rio 2016 Games will once again highlight the fantastic abilities of the world’s best para-athletes and cement the Paralympics’ position as the world’s number one sporting event for driving social inclusion... [Rio 2016] will highlight to the whole world exactly why inclusion matters." - Sir Philip Craven
  • "Organisers have described Wednesday night’s [Paralympic opening] ceremony, which is named "Enlightenment", as a "celebration of the inspirational spirit of the Paralympic Games that challenges perceptions of human possibility"." - The Telegraph, 2012.

OK, so there aren't many surprises in all that lot. Some people, though, have found a few more troubling aspects of the Paralympics:
  • "These athletes don't want sympathy, they want support. They would rather you cheer or even boo than be condescending or contrite... Yes, they have overcome trials and adversity. They have triumphed after struggles - that most Olympian of ideals - but they would rather be defined and remembered by what they achieve on the field of play, after all there is no greater leveler in a world of barriers and obstacles than sporting competition....If they lose, they lose. They're not plucky or brave, they are fourth, fifth or 23rd. These aren't a victims' Games or a survivors' Games... It's not a sob story, it's a sports story... Not a single athlete here wants pity, that would only set the Paralympic movement, a vision born in these Isles 64 years ago, back rather than allow it to spring forward into a new age of inclusivity and diversity." - Sportsbeat, 2012
  • "To be inclusionary in sport raises an interesting question about the Paralympics." - BBC Ethics Guide, (2014?) (Read the article for more info - it doesn't raise the question I'm looking for.)
  • "The opportunity for the London Paralympics to really reach a mainstream audience and introduce these amazing athletes to the world is amazing — the challenge will be to not let the bright lights and the drive towards elite sporting excellence distract from the commitment to creating equitable societies and providing more equal opportunities that have always been at the heart of the Paralympic Movement." - Andrea Bundon on LSE blog.
  • "The Paralympics are not devoid of debate and controversy – as an exclusive sporting event for disabled athletes, the Paralympics truly champion the spirit of diversity and this year, as they return to their birthplace, the Games have been raising a number of issues relating to attitudes towards and provisions for disabled people. Here are a few interesting articles we came across:
    Farewell Olympics, welcome Paralympics: Diversity in Sport
    , by Andrea Bundon

    Paralympic Paradox
    , by Dr Victoria Beechey

    Will the Paralympics stop you staring at me?
    by Paul Carter

    Paralympics tries to shake off image as Games for rich countries
    , by Peter Walker

    David Cameron praises Paralympians, but his policies will crush them
    , by Owen Jones" - LSE blog, 2012
Cost is quite a limiting factor, preventing many smaller or poorer nations from taking part. This is starting to be addressed, although I know from personal experience of Motivation chairs that although they are fantastic for grassroots sport, they won't provide a level playing field at international level:
  • "Five years ago the IPC tasked a British-based charity, Motivation, with developing lower-cost sports wheelchairs. The result was specialist tennis and basketball wheelchairs selling for £435 each. At the Paralympics the charity will launch its first racing wheelchair, the Flying Start. While such chairs usually cost £3,000 or more, this is priced at £590." - Peter Walker, The Guardian, 2012.
On the website of the BPA, we finally get to what I'm interested in here:
  • "Q: Why are athletes with Down’s syndrome, hearing impairments etc not currently included in the Paralympics?
    A: The International Paralympic Committee (IPC) is responsible for deciding which sports and impairment groups are represented in the Games so you would need to address these questions to them. There are other sporting events, such as the Special Olympics and Deaflympics that include these impairment groups." - from FAQs on the website of the BPA
Charlotte Cox - a hugely successful athlete who trains with C&C!
You may remember that I had a dreadful experience at my grading (classification) for riding. I was made to feel like a fraud; like scum. After the physio left, I cried and cried. It still makes me cry angry, frustrated and helpless tears when I think about it. My rowing classification - which took place before a new rule change in eligibility - was great. It was useful, interesting, supportive and very positive. In other words, it was how a classification should be: it was professional. It wasn't a personal attack by someone who didn't understand my illness and who openly suggested that I was that one thing which will always rile any sportsman, whether amateur or pro - a cheat.
Recently, an interesting story cropped up on my Facebook newsfeed. It was about a Paralympic archer, Simon Powell, who - like me - has Ehlers-Danlos Syndrome. He was already competing at international level when, in August 2015, his classification was stripped of him because, as judged by the International Paralympic Committee, EDS is no longer an eligible impairment. The same thing has affected a friend of mine, Claire Connon, who is an international para-rower, and many other athletes including Michelle Murphy-Wright (para-swimmer) and Laura Backus (para-triathlete who has completed the odd Ironman). Basically, after London 2012 the IPC decided that a number of disabilities, including EDS, were no longer to be recognised as eligible impairments. Although the changes don't officially come in until after Rio 2016, the cuts are being made now, and para-athletes all over the world are being told that the thing they have worked for, suffered for, made sacrifices for and dreamed of are now out of reach. It's not even a case of not being disabled 'enough' (although that would be pretty bad) - it's a case of being disabled, but not in the right way.

Just repeat that once or twice to yourself. You are recognised as disabled, and they're very sorry about that, but you're just not... disabled disabled. I mean, yeah, you're disabled enough... In fact, you're probably 'more' disabled than a lot of para-athletes who can be classified (fully-sighted sprinters, anyone?). But no, sorry, you're just not the right kind of disabled. Too bad. I suppose you could always... just do sport for fun? Not competitively? Or maybe just...I don't know...what else can disabled people do?
Inspirational but also insulting and utter bollocks.
This might sound like petulance, so let me put it slightly differently. Imagine you're Simon Powell. You have a wife and a young child, but your devotion to sport has kept you away from them on a regular basis as you tour the world to compete. You love them dearly, but you know that archery is something that you're good at, and a way to make your family proud and to make you happy. You put up with the hours and the inconvenience - alongside suffering from a difficult medical condition - because this is your job. You have sponsorship deals to fulfil, and you have medals to win. Your whole life is built around your sport. It provides your income, your friends, your good times and bad times, your whole life experience. More significantly, it provides a way of taking the rough hand you were dealt and throwing that away as nothing - it almost makes up for the disability you have, because you get to achieve amazing things at the same time as making a living. How many people can say that?

Now imagine that for no good reason - literally, no good reason, and not one you could have seen coming - you lose your job. You don't lose your job because you're not good enough - because you are an excellent archer. You don't lose it because your boss isn't pleased with your work - Archery GB have offered you their full support. You don't lose it because you're looking for something else and you have a better offer elsewhere. You lose it because you don't fulfil the requirements of the role anymore. But even that isn't straightforward - you haven't lost your job because you aren't disabled, but because you have the wrong disability. Not only have you been unlucky enough to be given a disability, you've also been unlucky enough to be given a disability which systematically destroys the whole of your body and yet is underestimated and misunderstood by the people upon whom your income depends. When you have a job like this, it's not just losing income. It's losing purpose of life. It's losing respect. It makes you look like a fraud - it's losing credibility. It's losing that thing that made you get up in the morning and made you feel good, however naff you felt because of your disability.

Here are the basic facts:
EDS is an example of a health condition “that will not lead to an eligible impairment type.”
(International Paralympic Committee, 2015)

“International classification for Paralympic sport is selective and not intended to be inclusive of all health conditions and impairments.”
(FEI Para-Equestrian Classification Manual, 2015)

And yet...
“To be Eligible to Compete, an Athlete must have an impairment that leads to a permanent and verifiable Activity Limitation. The impairment should limit the Athlete’s ability to compete equitably in elite sport with Athletes without impairment.”
(IPC Classification Code and International Standards, 2007)

So, does EDS “limit the Athlete’s ability to compete equitably in elite sport with Athletes without impairment”? I'll leave that one to you to answer...
Let's think about more about how this makes us feel.
Michelle Murphy-Wright, para-swimmer: Losing my classification "not only shattered years of dreams, it broke my heart into small pieces, which then felt crushed when nobody e-mailed to explain or apologise... I have just lost all hope; I haven't been in a leisure centre, let alone in a pool, since." This despite the milk-of-human-kindness words from the Amateur Swimming Association: "British Swimming follows the IPC Swimming Classification rules and regulations with regard to eligible impairments for para-swimming. Unfortunately, none of Michelle's conditions meet the eligibility criteria set by the IPC for the Paralympic Pathway and as such she was not able to attend the day in Plymouth. We sincerely hope that Michelle continues to enjoy swimming in the future." Hm.

How about Simon Powell? His response to his treatment was, "I’m just gutted. I’ve missed out on a lot and now I’ve lost all my love for the sport. I got through the classification by a mile. I’ve clearly proved that I have limitations but the IPC [International Paralympic Committee] has decided that doesn’t matter... In the pro shop [where] I was sponsored for equipment, they had a photo up from when I was part of the team that won the European championships. Someone said: ‘Shouldn’t they take that down.’”
Here's a slightly different angle, from a T35 (ambulant cerebral palsy sprinter) athlete called Sophia Warner. She competed for GB in the 2012 Paralympics. Six weeks before the Games, two T37 (more able) athletes were reclassified and ended up racing against her in the T35 races. They went on to win silver and bronze in the 200m (with Warner in fourth), and although Warner is philosophical about this, it's clear as well that there is still some bitterness. "It was devastating for me," she said here. "The system still needs to catch up with the sport. Unfortunately I was one of the few who was on the sad end of that." So far, we can relate to this - although a large part of me still screams, 'BUT YOU GOT TO COMPETE. YOU DIDN'T MEDAL BUT YOU GOT TO COMPETE! YOU WERE TAKEN SERIOUSLY! YOUR DISABILITY WAS THE RIGHT KIND OF DISABILITY!"

Then she goes on to say this: "I would like to think in 10 years' time it will be compulsory to have a brain scan. Some people won't be able to compete when that happens, because they won't fit clearly in the class. But at the moment mass participation is key to getting the sport to that level." Now, this is something I have a problem with. Not the idea that people should have medical proof of their disability, but the idea that only a brain scan can be proof of this (admittedly, she's probably referring only to cerebral palsy, but then even in CP a scan won't tell you everything). Far more upsetting is the fact that 'some people won't be able to compete' - but who cares? Those people don't count. They don't have a proper disability. Sure, let them participate to begin with, but they aren't the right kind of disabled. They don't count.


While we're on this subject, cerebral palsy is the King of all disabilities as far as sport is concerned. CP will get you classified in pretty much any disability sport. In many sports (swimming, for example), having a disability which isn't CP is quite a big disadvantage, because you'll likely be placed in an unfairly tough classification in a system which was designed for CP swimmers. In athletics, there are special classifications solely for people with CP - both wheelchair and ambulant. Somehow, though, CP still has the international CP Games, because let's give them another chance to compete. Bear in mind that Paralympic classification doesn't just let you take part in the Paralympics every four years. You can also go to the Commonwealth Games, or the Pan-Asian Games, or continental championships, and world championships. Without your IPC classification, you can't do any of this. Sorry. 

What do other disabilities do? Well, there's the Special Olympics (which hasn't had its name changed through political correctness yet). This is far more than a sporting competition: it's an entire organisation which champions sport for people with intellectual disabilities. It's about participation at high levels as well as competitiveness. People can be hugely successful internationally because of the opportunities offered by the Special Olympics. It's a wonderful organisation and I wish there were something similar that I could take part in. There are a few events for athletes with intellectual disabilities at the Paralympics, but very few.
Other disabilities apart from CP may have their own games. For example, there is international competition available for people with Down Syndrome. Other health conditions can be covered too, with events such as the Deaflympics. From the other side, increasingly we see athletes competing in able-bodied sports speaking out about their experiences of mental health difficulties (scroll down to the bottom of this page).

It can be done. There can be alternatives to the Paralympics. Perhaps that would be a good place for EDS-ers and others to start - but really, we want our disabilities to be taken seriously. We don't want to be made fools of by people who don't understand our illness (for example, EDS is excluded on grounds of hypermobility, which is an ineligible impairment, despite the fact that it also causes problems with muscle strength, muscle control, co-ordination, proprioception, dystonia, and so on, which are all eligible impairments when caused by an eligible condition). 

So, I've talked about how other people have responded to all this. I've mentioned how I felt when my riding grading was a fiasco. But I haven't really told you what I truly feel about this issue, and the truth may shock you. First, have a quick read of this, and in particular point number 14: "People would be surprised to know: I'd rather be paralysed or an amputee than have EDS, because nobody understands EDS."
We're not sure, so here's a zebra.
OK, so nobody does understand EDS, and that's annoying. But a more honest response would be, 'I'd rather be paralysed or an amputee than have EDS, because then I could get classified.'
How much would I prefer this? I would like to have my legs amputated. They hurt like hell all the time and I hate them and would rather be without them. The added bonus? Then I'd get classified. I could do the things I want to do. I would have my disability mean something. People would understand. And, most importantly - because, by and large, the people I meet in day-to-day life DO understand me and my disability - the IPC would understand. It would make sense to them. Lack of limb is obvious and incontrovertible. They wouldn't be able to peddle some rubbish about not being disabled in the right way. 

Not having a classification affects my mind constantly. I yearn to have the 'right kind' of disability. I long for amputation or paralysis. I pray for my condition to be recognised, or for me to be diagnosed with something the IPC will take notice of. It's not that I want to be more disabled - believe me I don't. I'm disabled enough already. It's just that I wish I had the right kind of disability. 

Why am I so desperate for this? Well, here goes.

At school, I was a musician. I played music all the time. I played every instrument and sang in all the choirs. I composed music for school plays or to play in assemblies. I worked with ensembles. I played in county and national youth orchestras. I went to a specialist music school. I was going to be a musician. That was my life plan, and I was happy. At the same time, though, I loved sport. I loved gymnastics, until I broke my spine. I loved athletics and was pretty successful in that too. I just loved running. Sure, my body wasn't brilliantly co-operative, but I still did stuff and enjoyed it. Then, aged 16, I began to get ill. I kept running, because it kept me sane. It made me feel as if my life had value; as if I had value. When I went into hospital, my body shut down and I didn't run for two years. By that time, I was at university. I was enjoying learning to cox, but I wasn't really up to proper exercise (although I continued running gently). My physical health deteriorated and fluctuated and by the time I left Cambridge it was time to be diagnosed properly with EDS. Around that time, I met Claire (the para-rower) for the first time. We met at a British Rowing Para-Rowing Development Camp, where I also got classified. I learned about the sport of para-rowing and about EDS, and was hooked.
I found somewhere to live whilst I did my Masters that supported para-rowing: Staines Boat Club. Whilst a rower (and cox!) at Staines, I learned a huge amount about my body. I did weights properly for the first time, and trained hard six days a week. I loved being part of the squad and pushing myself to challenge the limitations my body tried to impose upon my technique, fitness and capabilities. As my health continued to decline, rowing kept me sane. It made me stronger physically and mentally, so that I was better able to cope with the stresses and strains of EDS. More than anything else, though, it gave me an identity. I was Lizzie, the para-rower. My friends knew that I couldn't go out much because I'd be training. My friends at the boat club knew about my disability. My live-in landlord and her family knew some of my struggles. I was a disabled athlete: I was someone who had challenges to face, but who met them on the river, in the gym, on the erg, or lifting weights. I loved my new identity. It made me feel that I was doing something pro-active about my health. It made me feel that despite the multitudinous downsides of disability, there was something positive to be taken from it too.
The result of this was that, for the first time in many years, I was actually being successful in all the things I tried. Academic work was going really well. I was doing a bit of teaching, so earning a bit of money. I had people I cared about and who cared for me. I was physically not as healthy as I would like, but I was responding to this by increasing my fitness, and by challenging muscle atrophy with comprehensive weights routines. Best of all? I was happy. I was genuinely happy, and for someone with bipolar that can be quite a tough thing to judge. Sure, not everything was perfect. I missed John and my mum and Rosie, and the endless rain - causing flooding - in Staines was a bit much. But my life was good. It was on track. I filled my days with a series of things that I enjoyed: choir, music, studying, sport, crappy TV. Being a para-rower really suited me.
In case I haven't made it clear enough, the one really crucial thing you must take from this is: being a para-athlete validated me. To make that even clearer: it gave me a purpose. It told me that even though my body was 'broken', it was OK. I could still be a remarkable person - possibly even more so. It gave me a lease of life at times that seemed incredibly dark. It gave me an identity that fitted, and it gave me friends. Most of all, it gave me hope. It gave me something else to aim for when life was tough. It gave me a dream, and the ability to realise that dream.

Losing this validation - of me, of my lifestyle, of my future, of my present, of my hopes, of my fears, of my ambitions, and of my sheer physical being - is one of the greatest losses I have ever experienced.

Losing my grandparents in car accidents was tough. Losing my dad, suddenly, to a heart attack was almost incomprehensible. Losing friends to suicide, illness and accidents has been heart-breaking. Losing my mind was terrifying. Losing my health has been infuriating, worrying and tiresome. Losing my ability to work has been so hard to accept. But more than any of these, the sheer injustice of my loss of validation and therefore of identity is just impossible to come to terms with. 

Now, I don't know who I am. I'm a wheelchair racer, para-rower, and disabled rider, but I'm not actually a 'proper' one of any of those. I'm not a student anymore. I'm not really a musician, as I can barely play any instruments. Aside from 'daughter' or 'sister', I don't have an adequate label to describe myself. I don't know who I am, and therefore I don't know what my purpose is. I don't know what I should be doing with my days. My life is just one of existence. I go along to the things I'm committed to but they don't make sense to me. Why am I there? What is the point? 
Bipolar has come knocking far more over this last year - when I have been aware of all of this - than at any time since before I started lithium, five or six years ago. My psychiatrist has been more heavily involved and is cautiously raising anti-depressants while trying to avoid me tipping into mania. I've been a cause for panic on more than one occasion. I've struggled to enjoy life properly, although you may not know this - a decade of mental health issues has given me a wonderful ability to put on a brave face and pretend nothing's happening. After my dad died, I learned a useful trick of forcibly shoving bad thoughts out of my mind. It doesn't get rid of them or solve them, but it means that you can keep up the pretence a bit longer in public, and then let it all out later on when you're alone. Only very occasionally does it bubble over the top and show itself to people. It means that when I'm smiling and chatting, even laughing, shouting and joking, I might be thinking, 'Why am I doing this? I don't feel like this. It's not that I feel sad and want to talk about it. It's not that I think I might start crying. It's just that I really, really don't want to be here. This would be much easier if I were dead.'

And that, folks, is why this matters. You may think I'm being silly. I still get to do stuff. I still get to take part in things. I still get to do some 'normal,' 'able-bodied things'. I still have a wonderful family and friends and a lot to live for. The problem is that depression doesn't have to be rational (and bipolar disorder certainly doesn't), and at a time when, for the first time in my entire life, I had built a sense of 'Me' that I could live with, to find it so fragile and vulnerable and to see it so utterly destroyed is just more than I can deal with.

Let's be clear here. I don't want you to think that I get upset about this because I want to win Paralympic medals (although, if that were an option, of course I would go for it). It's not even that I just want to compete at the Paralympics - again, if I were offered a spot I'd be over the moon but I'm not so arrogant to believe that I would earn one. It's just that I want my disability and the disability of so many others to be recognised as meaningful, difficult and - der! - disabling!

Did you know that the Paralympics already has a classification, in theory, for people like me? It's called 'Les Autres', and it covers those who aren't already covered by the other categories (vision impairment, intellectual impairment, cerebral palsy, amputee or wheelchair user). Conditions that fit into this include dwarfism and multiple sclerosis. It used to include EDS and many more - but no longer. Why not? Why not make a 'Les Autres Autres' category?! If the complaint is that EDS et al aren't fair against other illnesses, why not make a separate category? Why should one have to delete these people altogether?
I used to feel like this:
But now I just feel like this.
I hope this rather long and rambling post has made some sense. The ultimate Christmas present, for me, would be the return of my identity. With that would come my purpose, my validity, my self-esteem, my joy, my drive, and my life.

I liked the Lizzie I was back when I was a para-rower. The Lizzie I am now is not one I think I can live with much longer. Something really needs to change.

Thursday, 10 December 2015

Say what now?

Lately, I've been having trouble with my ears. To be precise, I've mostly been having trouble with my left ear. I don't know what it is with the left side of my body but now my ear has decided it's time to be problematic too. For some time I've had tinnitus, which is normally known as ringing in the ears but can also cover all sorts of unusual sounds. My tinnitus is in both ears but is a bit more pronounced in the left one. In choir, I'm very glad that my spot is at the end of a row with all the other singers on my right - it makes hearing things much easier! The tinnitus is mostly just a high pitched whistling sound but sometimes, when it is louder, it gets down to a lower pitch which is much more invasive, and much harder to ignore in a musical situation.
This is very me.
The tinnitus first appeared years ago, but has become more persistent over the last year or so. In addition to this, I've started having weird symptoms in my left ear which I felt needed investigating. The ear constantly feels stuffy - the word the audiologist used was 'fullness', which is perfect. Most of the time it just feels like pressure in the ear, but at times it gets really 'full' and I can't hear anything out of it. It's as if someone has stuffed my entire inner ear with cotton wool! I get 'whooshy' sounds in the ear, almost as if someone is blowing into it, and these alternate with periods of everything just feeling very muffled, as if my ear were in its own private swimming pool. At these times, I can also get the really loud ringing sounds. It's really very inconvenient!
The other symptom that I get with this is vertigo. Now, I'm something of an expert on passing out. I do it quite a lot and I have various different ways of doing it! The most common, for me, is the POTS dizziness. This is where you move your body or even just your head and your heart fails to keep up so you don't get enough blood pumped round to keep you upright. When this happens, it's as if a cloak is drawn in front of my eyes and everything goes black, with a 'tingly' feeling in my head (these things are hard to describe and that's the best word I can come up with). It often makes me feel as if the front of my head is really heavy - as if I have a lead weight stuck on my forehead which is drawing me down onto the floor.
One of the greatest things I've ever seen. Perhaps this was made for people in bad relationships, but it sums a lot of my health up very nicely!
The dizziness I get when my ear is bad is completely different. I don't black out, but instead everything goes swirly, and I feel peculiar and sick. Although I can still see shapes and colours around me, my vision swims and it feels that if I try to look at something directly it just wobbles out of view, as if my gaze alone is strong enough to push it over. I often feel that I'm falling over backwards. In some cases (such as if I'm in my chair) this makes me fall, as I try to correct a movement which isn't actually happening, then overcorrect that, then topple over. Recently, at my mum's house, I had a moment where the left side of my head just felt unbearably heavy. I crashed down onto my left side, and, since I hadn't blacked out, I thought it was just my legs giving way, so I tried to get up. I then found that I couldn't physically lift my head from the floor. Helpfully, Rosie decided to help by sitting on my face and guarding me until my mum could come and pick me up.
More generally, I've found that I'm struggling enormously now with general communication. If I'm not looking at people when they're speaking, I find it really difficult to understand what they're saying (so using the phone is a nightmare, although I'm a bit better if it's someone I know well like family or John). It's not that I can lipread (although maybe that would be useful!), it's just that so much more is expressed in the face and seeing the general shape of the mouth makes things a lot easier. In busy situations, it's really tough too. It doesn't necessarily have to be noisy, although lots of background noise definitely makes things really tough for me. At bad times though, it could just be that there are a lot of other things going on and I find it hard to focus - so, for example, a really bright room with lots of decoration would make it difficult for me to focus in on the words.
Anyway, I recently decided that enough was enough. As a musician, hearing is really vital for me and I need to protect it. Also, I'd like to get rid of the vertigo if possible as it really isn't conducive to everyday normality. I was in town one day and decided that a hearing test would be a good way to start getting some help. Boots offer them for free, so I went in and managed to book a hearing test for just 30 minutes later (giving me a chance to do a bit of Christmas shopping in the meantime!). The young lady who performed my test was extremely nice. I was impressed by the way she remembered my birthday at the end from the very beginning of the session, and she revealed that she had the same birthday as me! She was only five years older than me, but had a hearing aid on each ear. Hers were wonderful. They were brightly coloured and had shiny stickers on them. They were basically the hearing aid equivalent of my wheelchairs. She told that she had to get them because of hearing damage through Ménière's Disease, and so she decided that if she had to have them at all then she was going to have pretty ones - a sentiment I can relate to entirely!
Look at all the priddy colours!
The test itself showed that my left ear does have some hearing loss compared with the right. They tested various frequencies at different volume levels, and I was stronger on the higher-pitched notes. I was booked in for a more detailed test, which I had two days ago. This test was basically more of the same: sitting in a little sound-proofed booth and pressing a button whenever I heard a sound. I was concentrating so hard on this (with my eyes closed!) that the audiologist nearly made me leap a mile when she opened the door again to swap the headphones round. They used two types of headphones - one in-ear pair, and one which sort of clipped around my skull quite tightly (at a diagonal, so not directly to the ears) and presumably was testing conduction through bone. It wasn't particularly comfortable but didn't last too long. We also discussed the symptoms I'd been having, particularly the tinnitus (any kind of non-external noise) and the vertigo. The audiologist has requested a referral to ENT at the hospital so that a final diagnosis can be made, but in the meantime has given me stuff to read about Ménière's, which seems a likely diagnosis.
Ménière's Disease typically affects one ear (at least at first). They don't really know what causes the symptoms, but it seems that there is an increase in pressure of endolymphatic fluid which causes the symptoms of vertigo, impaired hearing, and a sense of fullness. So far, there isn't a way to cure it, but there are some treatments which help with symptoms. Annoyingly, one of the suggested ways to lessen its effects is to eat less salt, which is precisely the opposite advice to that given by my cardiologist to help my floppy blood vessels!
So... that's that, for now, until I go to the ENT people. I went to see them a lot when I was much younger (at primary school) because we couldn't get my jaw to relax. It's tense on both sides, but I do wonder if some of my hearing problems in the left ear are related to that rather than anything else. We'll just have to wait and see. In the meantime, I'm trying to rest and I'm also trying to make sure that I'm not putting myself into situations which could be unsafe if the vertigo comes on. And I'm just trying to learn to lipread...
This made me smile.

Wednesday, 2 December 2015

Wheeling update - Oct-Dec '15

My last wheelchair-specific post was a summary of the half marathon in October. Since then, I haven't done any competing but I have been getting out and about.
Accompanying men - 3 shiny new novices in this crew.

I'm coaching the men's squad of my rowing club, which means that when they go out on the water I need to be able to keep up with them somehow. The easiest way to do this is to cox them, but this doesn't really help with training up our coxes. Most rowing coaches on the Cam cycle along the towpath (the river being too small, narrow and busy for launches to be a safe option) but I can't really do that. Instead, I am the Cam's only - and possibly first! - wheelchair rowing coach.
The main disadvantages of this are that I can't really get over the bridges very easily (so I have to catch them up about a mile down the river) and when they're really going for it I find it hard to keep up. That said, I'm able to keep up nicely when they're just paddling, and the biggest advantage over a bike is that I'm much lower down, which gives me a really good perspective that I've never had with rowers before. I can see what they're doing very clearly and it almost feels as if I'm sitting on their laps, I'm so close!
The towpath isn't an especially nice place to go for a push. It's often wet and muddy and so my chair has had to have a thorough clean a couple of times. I bought some car shampoo (partly because it was cheaper than bike cleaning stuff, and partly because it was green so matched Buster!) so now my chair smells really nice as well as looking shiny. Unfortunately, I managed to get a puncture in my front tyre, so I've had to get that fixed. I'm very lucky that I live quite near Draft Wheelchairs, because they're so good at having things in stock and being able to fit new items quickly.
Buster was even muddier.
When I went to get the tyre changed I was even allowed a little play in their handbikes! I tried out a mid-range model first, which was fun but hard work, then a higher-spec one which was fun but a bit scary. I suspect that if I'd had better control of steering, gears and braking then I would have found it less terrifying but a bit of fear doesn't stop something being fun! I'm hooked now and would love my own bike. The only problem is that having tested both models I now know the difference and would only really want the expensive one...such is life!
In our club training sessions, we've now moved on from the roads and paths around the West Cambridge site to the athletics track. Both the roads and the track offer their own challenges. On the track, you have the advantage that it's always flat, but the roads are a nicer surface to push on. In particular, the home straight (last 100m) of the track at Cambridge is quite hard work because it's been resurfaced and is much thicker and springier than the rest of the loop.
This photo from the summer shows starkly where the new bit of track ends and the firmer (but wetter) part starts.
I like being out on the paths, but getting used to the track is really important and it's a set of skills that I would like to improve upon before next year's competitions - and there's something satisfying about pitting yourself against something so unchanging. It's also changed the focus of our sessions - we're now mostly doing a high number of shorter, more intense pieces, and we're usually set off at specific time intervals so that we're chasing each other and attempting to catch those who set off before us. It makes for a tough session but it's a really good way to train and I feel that I'm getting a lot from it. Recent sessions include things like 100m on, 100m off (x as many as can be fitted in), 300m on, 100m off (x 8), and pyramids (200m, 200m, 600m, 1000m, 600m, 200m, 200m). It's safe to say we're being kept busy!
OK, so this is from the summer, but it's the most recent photo I have of me on the track. I was trying to capture myself and the little bunny which is about a quarter of the way in on the left by the hedge...!
My health in recent training sessions has been interesting. I've been taking lots of esomeprazole to try and keep my stomach contents down and have been working on trying to improve both the mobility and stability of my left shoulder. It turns out that this is rather hard to do, and I've had a few times recently where the speed of the chair has been enough to fling my shoulder joint out of place when I put the hand near the pushrim. Because the weather has been getting colder, we've also been trying to adjust to the winter temperatures by wearing the right kit, but it's really hard to predict how rainy it will be and how quickly we will warm up. Probably the biggest problem we've been having is with the wind, which tends to hit hardest between the 75m and 225m mark as you go round the 400m track. It's another thing to fight against, and at least has the effect of making the spongy last 100m feel relatively quick!
Panic-stricken dog in wind. I just love this.
Two other exciting things of note have happened recently. The first was that I finally received my cheque in the post for winning the Perkins Great Eastern Run (which is good because I'd already spent it on riding kit...) and the second is that I was awarded the 'C&C Trophy' for Best Performance by a Wheelchair Athlete - specifically the aforementioned Perkins win. This was presented at an awards ceremony after the club's AGM last week, which was an interesting opportunity to learn more about how the club is run and to learn about Jessica Judd, a young GB middle distance runner who was presenting the prizes.
Looking strangely apologetic - maybe because that's not my trophy...
Actually, the C&C Trophy wasn't presented as there'd been a bit of a mix-up about who was meant to be ordering the trophy (it being a new award) so instead I was handed the 'Multi Events' trophy to look good in photos (!) and also a smaller plaque for me to keep. My mum and John came along on the night to get some photos and although I suspect they didn't find the AGM too interesting they were very polite about it!
To be honest, I feel I should be doing more wheeling training. I'm getting out in the chair twice a week on average at the moment, but I'd like to be doing a lot more. Things are nearly getting settled with the PhD and everything, and then with any luck I'll have a bit more time to think about planning my training properly instead of just slotting it in around everything else. The other day I received a whole load of details about the half-marathon I've signed up for next April (in aid of the British Heart Foundation), and I'm also signed up for one in March, so I need to get training for them as I think I've lost fitness since October, and I want to be going sub 1:25:00 in the next half marathon. I'm quite sure I can do it but only if I get back to the longer training sessions. Tomorrow I've got a lot on, and the day after is rowing races, and the day after that is a dressage competition, but maybe the day after that I'll get some decent training done...