So, it’s strange. As a rider, especially as a rider with a disability, I work hard to not compare myself, my progress, what I’m working on to others. But, making the barn switch has exposed me to more. More people. More horses. More higher level riders. More expectations. And, apparently that is super motivating to me? Today as I tacked up for my lesson, I watched as an elderly horse and his mature rider tackled their canter work in the indoor while a jump clinic continued in the outdoor and something in me just said why not try.
Cantering is a tricky thing for me, a combination of something that’s physically hard and mentally challenging because I know my inability to put weight in my legs and disastrous coordination in general makes something I have to really concentrate on. Combining that with a prior horse who did not have the best canter, it’s a combined block. But, today, after some good sitting trot work I was asked what I wanted to do… and I said canter. And I did, walk canter transitions. 2 of them, one lap each.
Clare got all the cookies for being the schoolmistress I need right now, mentally and physically. So lucky to have connected with her and to be able to learn from her at the end of her career right now.
So, it happened again. Moebius syndrome ended up on television! Actually it did not end up on television, a really bad imitation of it did. It puzzles me that writers and medical advisors will go out of their way to “discover” these wonky diseases, then do a terrible job at them.
See her eyes? They would disqualify her from a diagnosis stat. One of two absolutely necessary diagnostic elements is the inability to move your eyes laterally, for heaven’s sake!
If you’re going to do it, at least do it write. Don’t exploit it then fail it.
And this doesn’t get into the question of… what does it mean that my rare disease is season finale worthy? Is it the weirdest, the worst, the most sensational someone thought of? Having lived with it, I have context. Others do not, I guess.
Next week is Face Equality Week. At first I kind of scoffed at that, because burnout, quarantine etc etc – but then I reassessed. I like it. I’m a bit perplexed as to what I’m supposed to do to “raise awareness” on all these various awareness days/weeks, beyone “hey! I exist!” – Face Equality is simple, powerful, meaningful and does a great thing in spreading the challenge. Yes, those of us with facial differences are in a position to advocate – but the challenge is also with everyone.
It’s just how we, as people, should treat each other.
The sitting trot is not a passive action. You can’t sink into it, you push into it – that rhythm, than down action – it’s percussive, it’s powerful. And weirdly enough, it’s now doable.
But first. Piggles and I had a kind of embarrassing failure of a last outing in June, he planted his feet at X and nearly didn’t move, then we were called off course when we weren’t, and decided that collection just wasn’t happening. Oops. But the judge (David Schmutz) was super kind and encouraging and it wasn’t a total embarrassment (that’s saved for when Radar ducked me off, damn pony!)
Anyway. We had a great August, he was going great. Decided to aim for early September show… and then was told they wouldn’t shorten the court. Got it, that venue is out! In September Piggles got a bit ouchy and life changes meant that he’s now partially retired and enjoying his life at Mar Val.
So, where does that leave me? At a new barn, with a new horse to sponsor and riding with multiple trainers for the first time.
Meet Claire! She’s an aged Morgan x Thoroughbred (my favorites!) and is teaching me so much. It’s not easy, hello anxiety! But she makes it worth it. I’m learning how to take my riding to the next level, pushing myself for more, working on moving instead of being quiet, of asking for more. It’s fun! She probably isn’t consistently sound enough to do any rated showing, but for me that’s okay for now – especially now.
She’s teaching me how to bounce, how to push, how to become more secure.
Spent this weekend spectating at the Golden State Dressage show and CPEDI, watching all kinds of wonderful horses and riders, and making my paradressage classification permanent!
I also tried my hand at some equestrian photography, I love photography although with fine motor and vision issues… my results may vary! I clearly need to figure out if my point and shoot has a sports mode and would want a tripod if I were to do more, but it was fun to try.
Classification was interesting, as usual (wait… I’m supposed to be able to move that way?) and literally nothing changed numbers-wise. We got looped reins added to my dispensation, which will be nice moving forward as we try things out.
The riding – in the CDI, CPEDI and Classic show – was generally inspiring and is giving me things to think about (FORWARD! FORWARD! PUSH into that FORWARD!).
Goals are funny. I’m really not a competitive person, but I certainly am goal oriented. I think it helps me… focus? Or something like that.
So goals: Piggles and I are aiming to ride the Grade II Novice A test at the ginormous Rancho Murieta CPEDI 1* in June. It’s big, it’s fancy… and the little Morgan and I (and Team Pig) are going to play with the big boys. Or Warmbloods, whichever you prefer.
In order to get ready, I’m riding a lot, and doing a few shows in preparation, 4 in total. Show #1 at the UC Davis barn was a fun, low-key affair, turning it up a notch with my first rated show at the end of the month. I’m excited, for rated it seems pretty solidly low-key (waived coats etc). Then 2 shows in May, one an “away” show where I’ll test out the hotel and riding multiple days.
Should be a fun spring, with enormous thanks to everyone in Team Pig for making it all happen.
I went to Florida for MSFCon18, and when I wasn’t frantically running around praying my wifi held for the livestreams (it did!) I relaxed by taking a few photos. Florida might have been steamy hot (eek! I know you get used to it, but eww!) but it had some super-pretty flowers and such. Plus I’m a complete fan of old restored hotels, so the Vinoy was exactly my kind of vacation spot.
This piece has been entered in the Patients Have Power Writing Contest run by Clara Health designed to raise awareness about clinical trials. I am passionate about this cause and hope it will help raise much needed awareness about the power of breakthrough research.
The cause of my (primary) rare disease is unknown. There are a few candidate genes, and research is moving forward, but at this time they essentially have no idea why I was born with Moebius syndrome, a very rare disorder causing facial paresis, skeletal abnormalities and neuromuscular impairment.
My go-to description is “It’s probably genetic, but not inherited” – they have no idea what causes it.
That’s not very specific, is it?
That lack of specificity, of knowing, is one of the hardest parts of living with a medical condition for which there is no known cause. It’s funny, actually, knowing the cause wouldn’t do anything groundbreaking due to the nature of my condition… but I want to know. I like knowing stuff.
Knowing what has “caused” my condition would, in a way, help me to better know myself.
So the question is: how do researchers research these rare, complicated disorders where there’s no clear genetic link?
I’ve been giving blood samples for over 20 years, clearly that wasn’t enough.
Enter the National Institutes of Health and Natural History Studies.
Moebius syndrome is lucky, in that the director of the NIH, Dr. Francis Collins, took a specific interest in us and championed our cause. He was part of a group that proposed the first natural history study of the condition.
It sounds ridiculous at first, to voluntarily put yourself through a week of testing, a few MRIs, yet more testing, getting zapped by electrodes, and more NIH waiting rooms than you can imagine. But it was actually pretty darn amazing.
In the winter of 2016, I spent a week in February roaming the halls of the National Institutes of Health Clinical Center, one of the most amazing buildings in the world. I met with so many specialists, all who were knowledgeable about Moebius syndrome (a rarity!) and were invested in the discovery process. I did have a lot of tests, some of which were annoying and painful or just loud (I mean, who voluntarily has 2 MRIs?)…BUT I was made to feel as if this was a really cool endeavor I was taking part in.
I was made to feel as if I was part of the discovery process. It reaffirmed for me that Patients Have Power.
When you have a very rare disorder, getting over 20 doctors in a week who all know about it and don’t act as if they are totally outside of their element is worth it. In addition to feeling like I was positively contributing to research, I got valuable information about myself.
Now, what happened next?
In the movies, a Natural History Study would magically lead to finding THE CAUSE and everyone would rejoice. Unfortunately, real life is not that easy. The researchers saw many people with Moebius syndrome, some people with similar conditions (and a few who they were able to diagnose with conditions while at NIH), and made no groundbreaking discoveries. Yet.
The work continues.
What is powerful about clinical trials and natural history studies is that the data itself is as valuable as the personal experience and treatment that comes from it. The data, samples and cell lines created at the National Institutes of Health are now in labs throughout the country, where researchers are still unpacking the causes of Moebius syndrome.
They have faith that discoveries will be made, thanks in large part to Natural History Studies.