SPOILER ALERT: this is all about me. Me Me Me Me Me Me!! My favourite topic. Heh. Yep, and even better? It's up front and personal.
|Velopalooza 2015 Pop Up Performance ride - the bellydancing stop|
I raced and I trained and I trained and I raced.
|My happy place. This is way better than drugs. And that's me, third from the left.|
Oh, and this:
|Woooo hoooooo! 2nd overall on the Vets ride!!|
I was pretty chuffed with my progress this year, and believe it or not, I was doing everything I could to minimize my risks on the bike. Seriously. I even left races and rides if it got a little sketchy or if I was feeling off in any way. I missed a lot of great miles with the Vets that I would have fought hard to stay in for last year, just cause I knew the consequences of a mistake at those speeds. Saved myself grief a few times, for sure. I was really happy to be doing what I love, and I was thrilled to be writing about bikes and cycling for work, too. Sounds perfect, right? In theory.
I almost didn't care that nobody actually likes me.
Why can't you post spokeNscene on Reddit, for example? Hmmm? You can find my legs on websites all over the place, but I wrote to a couple of them and nobody even bothered to answer back. So lots of folks like my legs, but you won't find a lot of people talking about spokeNscene, nor asking about the bicycle enhanced lifestyle that made those legs happen. People are so strange. But then so are the Gods we so happliy worship. Those damned deities have a bold sense of humour, that's for sure! Over the years, I've heard their laughter again and again, and I can most definitely hear it now. It is ironic. As strong and powerful as its muscles are, this body of mine is even more vulnerable and weak on the inside.
It's my fault. I neglected the bouncing for decades and now that mistake has come home to roost. Never mind. I never knew... and it's ok anyway. I can fix it, and maybe quickly if I do it right. I gave up alcohol. Well. Almost entirely. For years I consoled myself that though I can't have coffee or chocolate I can still drink a glass of wine with dinner. Very funny. My impact-free lifestyle has made me much, much more susceptible to fracturing than most people. Bikes have been my wheelchairs for many many years, and suddenly (or so it seems) I am ridiculously fragile. That No Impact EDS lifestyle is having a huge impact on my overall health. Yes, I have broken again, this time a collarbone and a rib. And at the same time, my immune system is weakened, almost non existant. It's that I'm ... well... falling apart. (Cue shingles and months of antibiotic use to fight a series of infections. Yuck.) The Gods are laughing cause as much as I am fired up and ready to advocate for cycling safety and infrastructure expansion, my body instead has me laid up and waiting on healing.
You're thinking that I am a klutz, a spaz, and just generally, ridiculously uncoordinated, and you're absolutely right. But it's so much more than that. My body has gone into full meltdown.
And I object!! This is not Who I Am! I'm mutarded, for sure, but I'm strong! Healthy! Fit!! I never catch a cold, nor the flu, I haven't called in sick in many, many years, even though I am and always have been vulnerable to all of the little things that most folks don't bat an eye at. At 16, a staph ulcer erupted and left a purple heart scar on my left hip. Staph is in soil and doesn't affect most people, but I have had those flesh eating, skin melting infections a few times. Very strange. I catch baby diseases like hand foot and mouth. I have an anaphalactic reaction to chocolate or drink coffee, and that's just Not. Fair. I mean, come on!
Connective tissue is central to healthy organs and the vascular system, too. It's not all musculoskeletal, though it's easy to see how that system's health and wellness is dependent upon strong connective tissue. This article about Caroline Smith will tell you a little bit about what it's like to live with EDS, and how thoroughly it can affect every aspect of a person's life. Everyone with EDS has neck issues. Many of us require fusion of the vertebrae protecting the spinal column. I have herniated discs in many places along the spine and will most definitely require stabilization surgery of some sort sooner or later.
It's an invisible disability, but it is every bit as taxing as it would be if I were back in a wheelchair. I look very healthy, so you would never in a million years label me disabled if you met me off the street. Well, not unless you see me in a sling
or a neck brace or ski poles or some other form of body support. I am like half baked china. I crumble and break.
The internet has seen my arse all banged up a few times but nobody would ever, ever look at me and assume that I am disabled. Someone accused me of not understanding how serious a business bike racing really is. He meant it. I wondered if he could possibly understand how very well I understand the risks, and I tried not to laugh at the irony. He could never possibly understand how even a slight mishap can quickly become very painful for me.
|Gratuitous ass shot. Daddy always said you have to play to your assets.|
|Meditation gives you another perspective, whatever your situation.|
I like to meditate, in stillness and in movement too. Every conscious breath counts, right? Wherever, whenever, whatever you're doing, it's probably a good moment to be conscious and aware. It's always a good time to be alert. Rare is that moment of pure, conscious awareness. It's good practise to meditate in a queue or waiting for an appointment, or at least it is for me, because those are the moments when I am most inclined to give in to ego, and become frustrated and out of sorts. It's surprising how quickly those moments add up; what a boon to have spent them in a moment's peace instead of that more self important state of stress and anxiety. If only I had the sage's sense of inner tranquility by nature, so that I wouldnl't have to wage an eternal battle with my big, fat ego. It's an ironic battle, that: the crusade for inner peace.
It's always appropriate to breathe deep into your belly, to relax and seek clarity. Always, and never is it more needed than when you feel you don't possibly have even one moment to spare for anything else. Time is the one thing we can't commoditize (is that a word?) perhaps because it actually is pricesless. Nobody likes to wait, right? That's what makes a long commute so soul destroying! (unless, say you're doing something you absolutely love to do as you're commuting. An avid reader might just adore the long train ride in to the city from Coquitlam, and this mutard loves a good ride first thing in the morning, any and every season of the year.) I don't actually suffer time thieves well, but anger actually suppresses the immune systems. Bikes rock because all of that daily travel time is also a moving meditation time, personal improvement time. I admire those people who handle their life's challenges with out that battle to get to calm acceptance. Adore one of em. You know, the kind of folks who quietly get on with doing what needs to be done, without swearing, or anything. Meditation helps with all of that lymph robbing anger
Certain people think that since I am fit, I am just putting it on. "EDS can't possibly be all that bad if she can ride like that, can it?" I actually overheard a family conversation in which this was the prevaling wisdom. That assumption is patently ridiculous, and never more so than when the Para Pan Am Games are happening. Worse still are the people who think that I should stop riding, that it is too dangerous. Sigh.
Any time you want to talk to me about the real danger on our roads, oh please yes. Let's. In the mean time, trust me, exercise is good for me and I do actually know what I am doing, Bikes are my mobility, doing away with them entirely is unthinkable, at least until someone can fix this mutarded genetic code. Bikes are so much more than active transportation and simple mobility. They are medicine. The enormous good they do for me is good for you, too. Don't knock it till you've lived it.
I wonder if people remember Olga the Magnificent and the things we learned about aging through her. Fitness is the very cornerstone of my health and wellness. Ehlers is progressive and degenerative, and I have to do everything I can to battle the ravages of age.
It's how I fight back.
I battle unstable joints with stabilizing muscles. A wheelchair is already quietly waiting in the shadows. Well, actually it's hiding in my bikes. but those bikes are also poerful medicine. Riding a bike stimulates the produciton of the happy chemicals you get from a good workout, And, they trigger the same chemicals as many of the prescription medications I am so often prescribed, too. I haven't yet suffered many of the worst aspects of the disease, (namely the episodes which involve internal bleeding and trigger the horrible seizures which are my mum's contribution to my interesting genetic combination.) because I learned to listen to my body's signals. I stay as fit as possible because I learned long ago that the fitter I am the better I feel. Serotonin, Dopamine, Endorphins, all of the brain's happy chemicals tend to flee the brain cursed with chronic and extreme pain. Riding long and hard is the best prescription for re-balancing the happy juice. I groove on that happy juice. Always have.
The honest to goodness truth is that I can't tell the difference between the high I feel from the combination of serotonin, dopamine, endorphins, and -hopefully daily!- oxytocin (wink wink nudge nudge:) that I get from a red-line workout, and that state of euphoria that makes oxyxontin such a dangerous street drug. They are one and the same reaction in my brain. I often experience extreme pain. I always have and likely always will. That is why I am so well aquainted with the various types of pain relief as offered by the western medical institutions, as well as by the naturopathic and homeopathic, Traditional Chinese Medicine, ayurvedic, herbal, and I even shamanic disciplines.
Sometimes people ask if I am a doctor. I love that. Nope, I am the opposite.
I love doctors, though. and they usually quite enjoy me. Not sure exactly why, but I hear it all the time. My doctor actually thanked me one day he said cause it's always interesting when I come to visit. Never a dull day, he said and he sees a LOT of me. (This is the MD who practices a form of ND and truly heals me.) Perhaps it's because I am that strange and unusual rare condition they studied in med school, come to life. The geneticists who diagnosed me were delighted with my competitive cycling lifestyle, insisting that it is the best way I might have managed to delay the degenerative damage this damned condition has scheduled for my joints, discs, valves and assorted connective tissues.
I have very limited mobility off of a bike because of the damage EDS has already done to my spine, and my hips, but on a bike I can go forever, or so it seems. EDS is a ruthless task master, Just when I figured I had worked out the best balance of life, well, just then twenty five or thirty years of an impact-free lifestyle came home to roost, and suddenly I am too brittle deep down inside, and very fragile. Another challenge, another adaptation. Now I bounce every day, to build my bone density and repair my immune system. It's an important aspect of babble's health K.I.S,S, (that's Keep It Simple, Stupid). Do you remember? I mentioned it last year... I have neglected the second aspect for far too long, but as a checklist the KISS list stands: Move, Bounce, Breathe, Purify, Love a lot, Laugh, and Sleep.
The only problem with the KISS list is that it doesn't address how to address the repercussions of NOT living well for a while. It isn't just the bouncing. I have been taking prescription medications of some sort almost continually since my big crash in June 2014. My body is not happy. Stressed and overweight and burdened with toxic substances. What a combination. I have a way to go before I feel as if I am on top of my game again, but at least I know how to get there from here. And every step of the way is an honour, a blessing. Every day above ground is a good day. Even a hotter than hades, hell-fire-infused, smoke-infested summers' day above ground is much better than the inevitable-for-everyone-eventually, six feet under alternative, right?
Living well is all I'm trying to share via spokeNscene. Sure, it's personal sometimes, but it's also inclusive. If you don't like it, then join the club and just click away. You'll be in great company. Promise I won't take it personally, but I do think you're crazy, you're playing on the wrong side of history. It's good this way of living, good for you and good for your community, too. And again, I've already made almost all of the mistakes it's possible to make, and have learned by them. Ha! I know more than a person really should about altogether too many vices, but I also know the way to an honest to goodness great way of living. There is a huge difference between knowing and doing though. My life actually depends upon taking the best steps forward from here, so you know which path I am on. Please do follow along with me. Give it a go. It's fun. I promise. C'mon... you know you wanna.
|big big babs, hitting the trail|
So... think about joining me on an adventure, will you? Let's see if we can't seek peak performance on the bike path to world peace. I will be back soon with a few of my favourite foods. Till then, keep spinning, and stay tuned. I'll leave you with a video of the whale we saw here in Kits a couple of nights ago, and with any luck, we'll meet again soon.