Sunday, 17 December 2017

Day 17

Today I am grateful to my wonderful friend Emily. Emily rides at my RDA group and is a very good rider and vaulter. She also comes to disability gymnastics class with me and always helps me have a great time!
Guess which one is me!
Emily has autism and is amazing at describing how it affects her. She is an expert on her condition and reaches out to people online and in person to share good news and good ideas. She's always so positive and has the best attitude even when she's finding things difficult.
Emily (in the checkered shirt) when we went to visit the Milton Brownies to talk about RDA
Lately, Emily has come on leaps and bounds in her riding! Recently I've seen her cantering and jumping - solo! - for the first time and I'm just astonished at how far she's come. Her confidence improves every time she gets on the horse and this was really shown recently when we had our end of term lesson.
Although in fairness, she was pretty good when she won these in 2016 too!
We were playing all sorts of gymkhana games and there was a point when the horses all got a little excited and cantered to end instead of trotting. Emily had never cantered on Danny before but she responded perfectly - she sat up, dug her heels down, held her hands steady and calmed Danny down. When he stopped, although she was initially a bit unnerved by the sudden change of pace, she soon looked calmer, smiled and got ready for the next game!
Emily is also immensely kind - she bought me this wonderful present (see video above). She cares so much about other people and is the kind of person I would love to be.

Day 16

This is John, my (very) long-suffering boyfriend. So far he hasn't despaired of me entirely despite my supreme talent for doing foolish things. He manages to strike the right balance of simultaneously looking after me and taking the mickey and is only occasionally exceptionally annoying. Most importantly, he is very good with Rosie - which is, of course, the most important yardstick. Saying anything else would just be horribly sentimental so I'll stop here!

Saturday, 16 December 2017

Day 15

Today I am grateful for puzzles! I love doing puzzles as a distraction from pain or feeling sick, or just to pass the time while I'm resting (I know, I know, it isn't proper rest if your brain is doing anything, but you know what I mean). It's something I've done to distract from illness since going into hospital when I was 17 (and I couldn't let my mind rest, so I had to do something). Mostly I just like cheap puzzle books with a good range of puzzles, but they aren't very interesting as photos, so here's something a little different: a classic riddle presented by a classic puzzle-meister...
...and here's a version made more appropriate for me!

Friday, 15 December 2017

Day 14

On Day 14 I'm grateful for our doctors, nurses, physios, occupational therapists and all other medical professionals.
It isn't easy having EDS or any other illness which is so poorly understood. A lot of the time, it feels as if we're fighting against the medical profession - fighting to be taken seriously, to be given answers, and to be given help. I've lost count of the number of doctors who haven't heard of Ehlers-Danlos Syndrome, of the ones who've told me things that I know to be incorrect, and of the ones who have tried to disguise their own ignorance by burying my case under a carpet. This shows that they respect me so little that they are more concerned with appearing omniscient than they are with helping me - or perhaps they simply don't believe my symptoms are real?

In this context - because this is meant to be about gratitude after all! - every medical professional who listens, takes you seriously and THINKS about what would be helpful! It's all we ever want but with the NHS it's not always what you get. I should also be grateful for the times it's saved my life. Well done NHS!

If you'd like to know a bit more about how it feels to have a disability caused by a little-known syndrome, and how medical professionals can help me with that, please read on...
To be honest, it can feel like I'm a parasite: I take and take from the NHS, and give nothing back. We are consumers with no control; demand greatly outweighs supply and the medical profession does not need to worry too much about our opinion. I am, of course, aware that the majority of those I meet in hospitals and clinics do want the best for their patients. I'm aware that they are under-funded and over-worked. I'm aware that they're only human and that they can still make mistakes. I'm aware that their job is difficult. All I would like from those doctors and nurses who don't make the decisions about funding and facilities is that they do one simple thing: stop worrying about being the best. You don't need to know everything about my condition (and, giving that you've just asked me how it's spelt, I'm guessing that's not much). You just need to have the humility to admit that you don't know; that you need to ask for help; that at the moment the situation is way beyond your capabilities and experience. Admit that you aren't omniscient and you can't fix me. That is so, so much more appreciated than fobbing me off!

Wednesday, 13 December 2017

Day 13

Today I don't have a proper picture to share with you, because it wouldn't be appropriate. That's because today I'm grateful for the children I work with, so instead I'm sharing these blob trees, which I sometimes use for a fun but sneakily productive session! I work in a primary school running interventions of varying kinds for varying kinds of children. Most of the children I work with are in Key Stage 2, which means they're aged 7-11. I really love my job because I never get bored (being bored is not an option when you work with children!) and the moments when you feel a bit of a breakthrough are just incredible. I really care about the children and being able to help them, even a tiny bit, is an enormous privilege.

Day 12

Bit late on this one because yesterday was a tough day. For Day 12, I want to thank Nett Wight, who is a brilliant horsewoman who works, teaches and coaches at the College of West Anglia, where I do riding and vaulting. Nett hasn't had the easiest time of it but that hasn't stopped her being generally amazing.
She came all the way to Hartpury to lunge me at the RDA National Championships (it's a very long way and a very long journey for a few minutes of competition) and even brought her mum along too as extra support! Having her at the end of the lunge line always gives me confidence and she has been a big part of my six national titles. At the British Champs this year I had some great horse scores which are massively down to her!
Nett always has the horse's comfort in mind and is good at getting the best out of any horse she works with. She's also good at getting the best out of me, and is strict but encouraging - perfect really. She's just fab.

Sunday, 10 December 2017

Day 10

Today it's the turn of Belgian physician, Paul Janssen (1926-2003). He discovered/created numerous medications throughout his long and productive career, including loperamide. Because of the way EDS affects my gastrointestinal system, I have to take loperamide regularly and at the moment I'm taking it like smarties. Basically, it's a drug which is used 'to decrease the frequency of diarrohea' - in other words, it helps you out if you've got the runs!
It's kind of interesting how it works. Loperamide is an opioid which affects the myenteric plexus in the large intestine. The myenteric plexus is part of the enteric nervous system, and gives intestinal tissue its motor messages (i.e., it sends neural messages to tell the intestinal walls to contract and relax). μ-opioid receptors in the myenteric plexus are activated which relaxes the tone of the intestinal tissues, allowing all the food that's being digested and gradually turned to poo to hang about a bit longer! There's therefore more time for water to be absorbed from the proto-poo (I made that phrase up). Loperamide also helps to limit the gastrocolic reflex, which is the clever part of your body that decides to make space for new proto-poo after a big meal by evacuating the rest of the gut!
It's a cuddly colon!
EDS affects my GI tract in a weird way. The first part of it (as far as the stomach) mostly doesn't do very much. Stuff stays in my tummy for ages and I have gastric reflux all the time (for which I take esomeprazole every day). My lower gut, on the other hand, likes to get the job done. It's all very well, but sometimes I wonder where it's all coming from as I'm quite sure I haven't eaten as much as comes out! It's not very nice having all the cramps and the needing to dash to a loo, which is why today I give thanks for Paul Janssen for coming up with loperamide, which helps me to spend more time having fun and less time in the bathroom!   

Saturday, 9 December 2017

Day 9

Quick one today because I'm in lots of pain and can barely type! Today I'm grateful for Percy Spencer. He invented the microwave, without which I would be in even more pain than I currently am (yay for microwaveable wheaties) and without which I'd probably have starved! There aren't many flattering photos of him but I found this one where he looks suitably benevolent.

Friday, 8 December 2017

Day 8

Today I'm feeling grateful for a very special and lovely lady. She's often an unsung hero and she isn't someone who'd make much of a fuss, but she's so kind, generous and funny and a chat with her always makes me feel better. Her name is Julie Holgate and she is the mother of one of my RDA group's volunteers, who is also a fabulous vaulter at Cambridge Vaulting Club. The daughter is called Isabelle and I'm going to save her for another day because she is also amazing!
Julie and Isabelle with Sandie, watching me at the English Championships 2016 with a degree of nerves!
Julie does a huge amount of work behind the scenes to raise money for the vaulting club, and she has also supported the RDA on many occasions. She works tirelessly but never gets grumpy! She never has a bad word to say about anyone and she always notices when someone isn't feeling well or is unhappy. Julie is a bit like a guardian angel and her presence makes you feel even better when you're already feeling good, or is reassuring when things aren't so great. Last night she helped me with a problem that had been making me feel really rubbish just by having a fresh perspective and also, magically, a plan to improve things!
Hug with Boris's big head in the way!

I am so grateful to Julie for everything she does. I'm sure she'd say she barely does anything, but that's probably just because she's naturally such a wonderful human! People like her are exceptionally rare and I just feel so fortunate that she is a part of my life.

Thursday, 7 December 2017

Day 7

Today I'm grateful for a man who touched many lives and, if his funeral today is anything to go by, will be remembered by hundreds (if not thousands) of people with great fondness and love. The Revd Canon Simon Pothen (aka Father Simon, or just 'Farv'!) came to Chelmsford Cathedral ten years ago when I was a girl chorister. His three daughters joined the choir and subsequently his youngest son became a boy chorister.
Chelmsford Cathedral
One of my earliest memories of Father Simon is the first service he had with us. He was the Canon Precentor, which means that the parts of the liturgy that were to be sung by an ordained minister were his bits! Most Precentors have only a passing interest in music, but Father Simon was different. He was a skilled and sensitive musician with an amazing voice that you couldn't help but stop and listen to, whether he was singing the liturgy or telling a filthy joke!

As members of the priesthood go, Father Simon was unusual to say the least. He had a laugh which resonated everywhere he went and which was so infectious that even those who disapproved of some of his humour ended up laughing anyway.

At the same time, he wasn't just an interesting guy, with good musical knowledge and an enormous repertoire of bad jokes. He cared deeply for people and had a serious side. I remember him preaching once and talking about how changes in government policy were adversely affecting disabled members of society. He talked about the challenges faced by his eldest son, who has autism, and by the whole family as a result of austerity measures. When a friend committed suicide, he was there and so was his lovely greyhound!

Most importantly, he was refreshingly honest when discussing tough things. He never pretended that life doesn't have its trying times, and he didn't hold back from using more colourful language to describe those times than I think I should share here!

He loved deeply and was deeply loved in return. He was a giant of a man in pretty much every way and will leave an enormous hole. Several of my friends who were at his funeral today shared my view that we kept expecting him to appear and join in. Obviously he was there in body and, we think, in spirit - but that doesn't make it much easier when the two are no longer combined.

Requiescat in pace.
Requiescat in pace.

Wednesday, 6 December 2017

Day 6

Today has been hard, so today I am grateful for talented people like Emm from Emm's Positivity Blog. I've shared some of them before (here and here), and you can see more of her work on her website here.

Tuesday, 5 December 2017

Day 5

Today I'm thankful for this silly pair. Rosie will feature again because she's my near-constant companion, so I'll tell you more about her some other time (or you can see some posts featuring Rosie by clicking here). Rosie is great because she looks after me and knows when I'm poorly, injured or generally in pain - but more on that another time! The dog on the right is Maple, my brother's working cocker. She is mad and this is one of the only photos I have of her being still! They're both lovely and lots of fun. Here they are having a nice little snooze in the car on the way home from the Game Fair earlier this year. Dogs are so good for humans and we should never take them for granted!

Monday, 4 December 2017

Day 4

Today I'm sharing some stills from a video that was taken this morning at gymnastics. I have an awful lot of people to be grateful for when it comes to what I've achieved in gymnastics so far. I've gone way beyond what I thought I would manage and, although I'm still working on very basic skills and making gazillions of mistakes, I'm having so much fun and I'm proud of what I've achieved! In order to get today's photos I depended on the help, support and encouragement of Iwona (coach), Lorraine (pink top), Claudia (grey top) and Becky (behind the camera). Special mention also to Hannah and Gemma who aren't in the picture but who are brilliant coaches at the club and have helped me so much. What a fab bunch of people!
When I started disability gymnastics classes in January I couldn't really walk at all without my crutch, but now I usually feel confident in moving around the gym without it. I'm still nervous about going anywhere without it outside the gym (if only there were sprung floors and crash mats everywhere I went!) but it feels amazing to be moving about without constant support even if I can only manage it for short periods of time. When I started, I needed constant support for all the moves I did - holding onto the bars, for example, or sitting on the trampoline, or using my crutch to walk along a floor beam. One of my first activities was simply sitting on a block and standing up again. It was so hard!

Sunday, 3 December 2017

Day 3

On Christmas Eve last year I went and did fun clear round showjumping with Rolo. Whilst there I met a lovely young lady called Emma who took some fantastic photos of us. I'm very grateful to her not only for admiring Rolo and taking some photos, but also for tracking me down and getting my email address so that she could send them to me. You can see her instagram page here.

I'll probably share some more of her photos later in the month but I picked this one today because it also shows my lovely friend Meghan, who is a talented vaulter and has helped me enormously with all things vaulting! She's kind, generous and fun and although she has her own struggles to cope with she's always ready to help others.

I'm very grateful for both Meghan and Emma!

Saturday, 2 December 2017

Day 2

Day 2 - chilly winter cuddles with this ponio at the RDA group which is now training me up as a coach! I've only been there a short time but they're so kind and welcoming, and I'm really loving it so far.

Advent calendar! - Day 1

One of my friends started doing this and I thought it was a good idea. I'm a day late, but you'll just have to forgive that. The idea is to share a photo every day leading up to Christmas, and I would really like to share photos that show the friendship and support that I have which help me to cope with disability and to achieve all that I can.

So, without further ado, here's day 1!
2 years ago, fun Christmas showjumping at Springhill Stables (I'm in the middle on Oscar). Kirsty (green jumper) has always been a tremendous supporter of RDA and of me! Fiona, who owns the stables and teaches us, is a brilliant instructor who has made such an impact in my development as a rider. Thank you to them and to Cambridge University Riding Club for linking us all up!

Tuesday, 21 November 2017

RDA AGM

EDIT: When I actually gave this speech I wasn't sure if I could get through it without crying. I'm one of those people that look AWFUL when they cry, so there was no part of me that wanted to cry in front of a large audience! As it was, several people came up to me afterwards to say that I'd made them cry (sorry...) and a few had also noticed how choked I got at one point. Anyway, the point of this is that there was one thing that I would have liked to have talked about but I just knew I would lose it if I did. I've added that in now at the relative point (about three-quarters of the way down, in italics). For more information on that aspect of things, please read this post (which also made people cry - sorry again!). 

At this year's AGM for the Riding for the Disabled Association, I was asked to go and talk and give a participant's perspective on all the great stuff that the RDA does. Fortunately it went pretty well and several people have asked me if I could share what I talked about. It doesn't translate perfectly to prose but I'll do my best!
Saddlers' Hall motto: Hold fast, sit sure!
"Your Royal Highness, ladies and gentlemen - hello and thank you for having me here today at Saddlers' Hall! [I copied this from Alastair Stewart, who fortunately knew how to address HRH Princess Anne and went first - I hadn't even thought about that!] Ed Bracher has asked me here today to talk about why I need the RDA - and I really do need it. I'm going to start off by taking you back to when I first started riding...

I've always loved horses. When I was six, I was out for a walk in the village with my dad and we were paddling in the river when a horse and rider splashed through. I was utterly spellbound and, after stroking the horse's nose and looking in awe at the rider, I waited until they'd ridden off before asking my dad, 'Do you think I could have a go at that?' Foolishly, he said yes - and that was that!
4 different grey ponies, c.1996 - 1999!

Here are some pictures of me learning to ride. I know I didn't just ride grey ponies, but I couldn't find any photographic evidence for that! Anyway, I loved riding and was basically obsessed with horses. At the age of 12, for example, my idea of a good read (and one that sustained me throughout a three-day car journey to the south of France) was the Robinson's catalogue. I would carefully make lists for a variety of budgets, ensuring that my dream horses would have the best quality tack, rugs, haynets, grooming kits, wormers, bandages...everything!

After that summer my dad got a new job. Around the same time, I was interested in going on a school ski trip, but I was pretty surprised when my dad said that I could go skiing if I wanted to - or I could get a horse. Once I was sure he wasn't joking, it took no time at all to make that decision!
Rocky, 2002 - 2003

We bought a lovely horse called Rocky. He was the biggest horse I'd ever ridden, but he had a lovely temperament and was a good size for my two older brothers too. I loved every minute of having a horse and was just as happy making his coat shine, mucking out the stable or lugging haynets around as I was riding him. He was lovely to ride - generally calm but more than happy to go for a gallop and jump some jumps that were far bigger than I'd ever jumped before.

Unfortunately it wasn’t meant to be. Just over a year after we welcomed Rocky I hurt my back doing gymnastics. I was the only person in the family who was nerdy enough to know the ins and outs of looking after a horse, and the only one obsessed enough to think that a morning spent mucking out, poo picking and pulling up poisonous weeds was a morning well spent. With me out of action, unable either to ride or to care for him, he had to be sold.

In the years that followed, I tried again and again to get back into riding, but it never worked out. I have a progressive genetic illness which had obviously been present from birth but the back injury suddenly accelerated my deterioration, and made people realise how serious the issue was - the fact that it took six months to diagnose multiple vertebral fractures and compacted discs in a thirteen-year-old girl suddenly made people realise that when I said I was in pain, I wasn’t just whingeing! As well as affecting mobility, my illness causes plenty of other problems, including dysfunction of the autonomic nervous system and problems with vision and hearing. Every time I tried to ride I ended up in agonising pain and unable to move my legs. I didn’t really care because I still had a good time but it wasn’t a sustainable solution, so I believed that I wouldn’t ride again.
Time at Cambridge
Throughout school and then university I somehow clung on to being a student even though I was always in and out of hospital. Throughout my first two years there I was very unwell and when I look back I am amazed that I survived it all! I took an extra year over my degree because of illness and bereavement but I loved university and, in particular, I loved rowing and coxing. When I graduated, it seemed a logical next step to become classified as a para rower.
Being a para rower felt amazing. I trained alongside able-bodied rowers and the same training - and often more. For the first time I felt that I was building fitness and strength. I wasn’t bad as a para rower but I knew my days were numbered as I’ve always had problems with grip and balance. The reason I’m going on about para-rowing is that it’s how I came to the RDA!

It was meeting this lady here (see above, circled in red) that changed things for me. We met at a rowing camp and got chatting about what I could do when rowing stopped being feasible. I’d heard of the RDA but I didn’t think it would work for me - I didn’t see how riding with the RDA could be any different. Vanessa said to give it a try and I agreed I had nothing to lose. I was sceptical, but went along anyway.
Well, boy, was I wrong! All these photos (above) come from within my first term of riding at the RDA. A much steadier approach benefited me enormously and I also learned how to use my body to ride well, instead of trying to ride and forcing my body to try and keep up.

So now I’d like to talk a bit about disability and how I see it. It can be easy to think mainly of the medical aspects of disability, but there are social and emotional aspects too which affect how we see ourselves and how we behave around others. In particular, there are three social and emotional aspects I’d like to focus on: feeling isolated, feeling afraid, and feeling demoralised.

Feeling isolated can affect anyone of any age - disabled or not - but from what I’ve seen disabled adults are the most likely to be isolated and lonely. In the absence of school and, often, work, it can be hard to feel part of a consistent group of friends. Personally, I find that keeping up with my peers from school and university is very difficult because of the dramatic difference between our respective states of health. I miss a lot of things because I’m unable to travel far or to stay up late! My mental health is quite precarious anyway - aged 17 I was diagnosed with bipolar disorder - so I struggle a lot with feeling isolated. It makes me feel excluded and I don’t think my friends can understand.
Happy days!
My friends at RDA, on the other hand, do understand. They know how it feels and we provide each other with a social group in which we muddle through this life together. This is so incredibly valuable that I cannot overstate it. When I’m feeling isolated, I remember my RDA friends and I remember that they understand - and it does me the world of good.

Another way in which the RDA helps me to feel less isolated is in the fact that it gives me the energy I wouldn’t have if I were stuck at home all day. Even more importantly, it gives me something to do with that energy that makes me feel good. I train hard, every day, partly because it’s good for me but also because I want to be successful in competition. It’s much easier for me to accept that I can’t make social events because I’m training or competing than to feel it’s just my illness holding me back. It makes it feel as if I have control and I am making an active, independent decision instead of being limited by circumstances beyond my control.

The second emotional aspect of disability I’d like to discuss is fear - an issue which can be quite taboo in a culture that heavily prizes resilience. Most of the time I’m very sanguine about medical issues and, indeed, most ‘scary’ things, but at times it can feel that you are facing more than you can handle. This is when RDA helps, because you are always working towards a new challenge.
Left: Christmas jumping with Rolo; Middle (top) gymkhana games with Rolo (bottom) side saddle showing with Rolo; Right: Vaulting at Hartpury with Boris
It may be developing an independent seat in walk, feeding a pony a carrot, taking the reins in a carriage drive or cantering around a cross country course, but, whatever it is, each challenge that you rise to and that you overcome is evidence that you are courageous, and that you have got what it takes to face the scary things in life. This is because courage and confidence can be transferable.

Through RDA I have learned that I am capable of more than I realise, starting with getting back on a horse! I’ve learned to add the word ‘yet’ to ‘I can’t do that’. I’ve learned that I should never say never; that I’ve surprised myself so many times in the last few years by what I can manage that I shouldn’t limit myself by restricting my expectations, but should rather be open to being able to learn anything - because how will I know until I try? This is a stark contrast to what I’d been taught to believe by some medical professionals and some fellow sufferers. I was told to expect to get worse and worse in every respect, and although things remain very difficult it just hasn’t happened like that.

There are so many things that I used to believe I’d never be able to do on a horse...

I believed I wouldn’t ride independently or canter.
Dec 2016
I believed I’d never jump.
March 2017
I believed I wouldn’t compete - or that, if I did, I’d be no good.
July 2016
I believed vaulting would never be an option for me.
Jan 2016
I didn’t think I’d ever be able to let go...
Feb 2017
 ...and, quite frankly, I still can't quite believe that I've done this!
If I can do these things, just think what else I can do! Think what else I can manage; think what else I can handle. I’ve learned to be patient with myself and to dare myself to push the boundaries of everyone’s expectations, particularly my own. Every time I manage something new, especially something that’s a bit daunting (and believe me, cartwheeling off a 17.2hh horse can feel daunting), I feel so positive.

My disability will get worse, and there are scary times ahead - but the RDA has given me the confidence to face them with defiance.

Finally, I'd like to discuss feeling demoralised. Morale is influenced by how isolated and afraid you feel, but there is more to it than that. It’s easy to feel that you are less of a person after the incident that caused your disability, or that you have never been on a level playing field with your able-bodied peers. RDA activities - formal and informal - allow you to grow as a person, and to gain some degree of control over your life. For people who have very little control over what they can do, having that little element of power - the power to improve yourself in any way - is a lifeline.

Morale is more than friendship and it’s more than confidence; it’s about feeling comfortable with yourself not just in the present and in the future but also in the past. This is something that I still struggle with a bit but the RDA helps me enormously. Generally I know that tearing myself up over past decisions and bad luck just isn’t helpful, but sometimes I can’t help but feel really frustrated and even ashamed at how different my life is now compared to what I had planned and hoped for.

How can the RDA make a difference here? Well, it gives me a new trajectory. Sure, I’m not doing what I had expected, but I’m still doing things I can be proud of. I’m still working hard and achieving amazing things.

The RDA has transformed my life by giving me the opportunity to develop abilities I never knew I had, and to uncover skills I thought were lost forever. It’s done this in a variety of ways: through competitive achievements, through fun and friendship, and through taking on some responsibility on various committees. It’s even helped me to get jobs in schools, working with children with special needs.

For me, the single most valuable thing it has done is that it has restored a bit of my old life to me. Although I’ve always had my genetic condition, it didn’t start to be really problematic until I broke my back. I often look back at my time at secondary school as a very difficult time because of all the health problems I experienced and a lot of time spent in hospital. I look back at my time at university with regret that I haven’t been able to fulfil the expectations I had of myself. I have often looked at photos of myself as a child and felt that I let that child down: that I wasn’t well enough to let her show what she could do, that I should have tried harder, or been more careful. I feel that that child’s potential has been lost to health problems that not even her doctors could understand.

I also feel a profound sense of desperation and even anguish for that other huge thing that that child lost too early - her dad. That child only ever started riding because her dad helped to make it happen. He took her to the stables in all weathers with no complaints. He acted as cameraman and general dogsbody with good grace! He supported her no matter what she did - if it was her highest ever jump or her hardest ever fall. She only managed to get him on a horse the one time, but he would accompany her on foot for every hack. He was always her champion in everything she did, and recognised all of her efforts to make him proud. 

Losing my dad when I was at university is something that still hasn't really hit me, even though it was nearly seven years ago now. It was a massive shock - a very sudden death - and so there's still a part of my brain that hasn't realised he's gone. With each rosette, trophy and national title I win, I think of him. It's hard, because my first thought is to ring him to tell him the good news, and realising that I can't do that is like a kick in the stomach every time. In a way, though, the RDA is helping me to come to terms with his death. Perhaps it's just the passage of time, but I think it's more than that. Being with horses gives me a space to feel that I'm with him, and the time and happiness to accept it. Of course I still miss him - but the RDA has narrowed that gap between us. 

It’s an incredibly difficult thing to look at photos of yourself as a child and to weep for what you perceive as the lost opportunities, the unfulfilled dreams, and the disappointment you think you are.

Being involved in the RDA hasn’t taken away those feelings entirely. I still haven’t achieved my childhood ambition of becoming the next Lucinda Green, who just also happened to be a professional musician in the Berlin Philharmonic. However, it’s given me the chance to look at those photos and think, ‘It won’t be what you expect. It will be harder than you expect. You won’t like it a lot of the time - but it won’t be all bad. You will be proud and you will be contented. You will be happy and you will do remarkable things with remarkable people.’

When I was first diagnosed, there wasn’t any talk about improvement of symptoms. Instead, doctors and other medical professionals were preoccupied with stabilising my health and teaching me techniques to mitigate future problems. There were so many aspects of my health that we had to work on that the idea of me gaining any new skills was just never considered. Instead, we all assumed that my body had done about as much as it could. Whilst many aspects of my health are worse now than when I first started at the RDA, I have learned new things and have been able to teach my body to do new things. Despite many worsening symptoms, I feel that I can do more than ever!

In short, the RDA has given me the ability to look back at my childhood self and to be kind to myself, to be encouraging, optimistic and excited. And, from doing that, I can start to feel that way about the present and the future too.
I could leave it there, but…I’m just one person! I want to share with you some of the things that other participants have said about the RDA. These come from anything from casual conversations to internet surveys, and I thought you’d be interested to know some of what they have to say.

First of all, here are some groups who received special mentions in the responses to the surveys!
Clwyd, Heron's Ghyll, Arrow, Wenlo, Cambs College, Barrow Farm, Magpie, Otley and District, Berwickshire, Gogarth, Abingdon, Scropton, Gaddesden Place, Mid Cheshire, New Yatt and Pegasus.
I asked people to sum up their experiences, and to answer the question, 'What would you like to say to the RDA about your experiences?’ This is some of what they replied...
  • "It's given me the confidence to come out of my shell and become who I really am."
  • "It helps my brain. My brain is not working good. RDA helpers and riding is good it makes me confident and calm."
  • "Happy, miracle."
  • "Awesome. I can do this!"
  • "Riding gives me freedom from my disability."
  • "It's my daughter's life."
  • "I look forward to every Saturday all week."
  • "I have been a member for over 25 years and enjoy taking part in competitions and working as a volunteer - meeting other people."
  • "The RDA makes me feel like I'm good at something."
  • "To learn how to drive a carriage and to be able to go to the Nationals is something that I never thought would happen to me. I've only ever achieved one academic thing in my life and the Nationals is the second - so yes, RDA has changed my life."
  • "Horses provide vital physiotherapy but there is more to it than that: horses caputre people's souls."
  • "I thank RDA for giving me the gift of the horse."
  • "Without the dedicated staff and volunteers it would not be possible. They make the whole experience so special, exciting and fun, which in turn ensures confidence, so a huge thank you to them."
One phrase that came up more than once was ‘life-changing’, and I would argue that the RDA is also life-affirming and life-giving.
Rebecca from Cambs College RDA :)
This is what you - our RDA volunteers - do, and it’s what you have done for me.

Disabilities, whether congenital or acquired, shape our lives and send it in many different directions. Disability is life changing, but so is the RDA. Whenever disability gets you down, the RDA lifts you up. I couldn’t be without it."