Adaptive Cycling Roundtable, beaches, Comal River, differently-abled, disabled, eat cake!, Free On Three, FX, Hope, Leary Firefighters Foundation, Luke, meta, MS, New York City Marathon, prognosis, Recumbent Cycle-Con, recumbent trike, Rescue Me, service dog, Steve Green, Team LFF, tennis balls, un-hear, velvet cake, wheelchair
For some reason–maybe because of my birthday–I was just remembering this truly awful neurologist I saw once who told me I would be in a wheelchair by age 40 at the latest & probably wouldn’t see my 45th birthday. I’m still not sure if he actually believed that rubbish or if he was one of those medical professionals who believes it’s better to give a grim prognosis so that the patient in question will be grateful for anything more than what’s been predicted & then attribute that extended health & life to said doctor & his “miraculous” treatments.
Or maybe Dr. Pessimist really did believe what he said. (who knows what he was thinking)
What I do know is that he certainly wasn’t basing his opinion on medical evidence. Nor was he helping me in the least by saying such a thing. I never actually believed his dire predictions but I cannot deny that his words scared me at first. And they came back to me from time to time. Like a prickly haunting echo. Like some wispy, woo-woo kind of Dickensian Christmas Carol ghost of my MS Future. And, of course, this ghost would shadow me when I felt the most vulnerable, the sickest & weakest & wobbliest. Which is to say, those words would kick me when I was already down.
Sometimes the grinchy ghost would pop up with his dark raspy mantra of crippling & too-early death when I was feeling the least bothered by MS symptoms, too. Just to cut in and remind me to enjoy it while it lasted, because it might not last for very long. You know, that waiting for the other shoe to drop kind of thing. A sneak-up-on-you sharp, sour, sliver of dread that tries to ruin an otherwise good patch of shiny, (relatively) easy-going healthfulness.
I hate that that doctor’s words hid out in my psyche and sucker punched me. He’s like a white-coat-wearing Jack in the Box with a doomsday attitude. And as mad as I am about what he said that I cannot forget, I’m even more angry on behalf of all those other folks he may have convinced. I worry about the patients who believed that doctor and others like him who make unfounded prognoses.
In general, the nay-sayers of the world royally tick me off. I find it especially grievous when the nay-sayer has some kind of authority. Teachers, parents, coaches, doctors, leaders in religious communities, etc. Words are powerful. Words coming from a white coat or wearing a white collar can wield all the more force.
I don’t know about you, but there are so many words I wish I couldn’t remember, because I let them convince me of things that weren’t true. Words can lend hope, give it outright, diminish or flat-out destroy it. We can’t ever un-hear; the best we can do is forget. But forgetting is one of those things we rarely have any control over. In fact the more we try to forget, the deeper we seem to imbed something in our psyches.
So I do my best to focus on what I can control.
I don’t think about Dr. Pessimist too much anymore, though every now & then his words come back and snap at my heels, make me wonder how long I’ll have this much mobility. But today is my birthday. And while I cannot help remembering the disturbing & disheartening opinions of that neurologist, I can choose to point my finger, wave my arms and call out the falsity of his prophecy. I walked my dogs in the rain today & we did little happy dances in the puddles; they yipped, I woo-hoo-ed. I cleaned & lubed my recumbent trike because I rode yesterday and I’ll be going on another training ride tomorrow, preparing for my second year of the New York City Marathon with Team Leary Firefighters Foundation. Tonight I’ll have dinner with my husband and my best friend & her boyfriend–my service dog Luke will keep me safe in the coming & going. Right now my vision is okay enough to write an entry for this blog, and that makes me very happy.
Two weeks ago our beloved god daughter was here and we floated on inner tubes down the Comal River with friends, took Luke to the beach almost every day,
went to movies, walked the trails of the nature preserve by our house. In less than two weeks I’ll be traveling to New York City for the screening of the finale of FX show Rescue Me, a fundraiser for Leary Firefighters Foundation. If I were in a wheelchair–or didn’t have a mobility assistance service dog–I most likely wouldn’t be able to travel alone, have the freedom to go about in the world and do half of what I do with the people I love, support the causes I believe in. (not that I’m ever truly alone with Luke at my side, but you know what I mean)
Life wouldn’t be over, by any means, if I were in a wheelchair. But the fact is that I don’t need one. Not yet, anyway. And there can be no doubt that I strive to find as many ways as possible to celebrate this life, my life, right where I am, the way I am–however able or disabled or differently-abled I may be on any given day. That’s what I choose: what I think, what I believe. That’s what I can control.
Today, this day, is my 47th birthday. And while I remember the nay-saying words of the Eeyore doctor, I refuse to keep one ear listening for other shoes that may or may not end up dropping. I’m going to eat birthday cake at you, Dr. of Doom & Gloom. Red Velvet cake, to be precise!
My birthday wish is that we all take care with our words. The ones we speak, the ones we listen to and take to heart. Be mindful, even (especially?), of the words inside your head. If they sound too much like Dr. Chicken Little, remember that you have the choice whether to listen, whether to believe. And then, eat cake. (eating cake is just basically a good move regardless, trust me on this. it’s life affirming. it keeps the nay-sayers annoyed. how many more reasons could you possibly need? go, eat some cake, already)
My other birthday wish would be for you to support Leary Firefighters Foundation through my participation with Team LFF in the upcoming NYC Marathon. You can support with your words if you’re unable to do so with your pocketbook. Just tell a couple people you know about LFF and ask them to tell someone else.
A couple bits of news:
There are many inspiring stories; a plethora of information about recumbent trikes from designers, manufacturers, purveyors, forums where we come together to learn & share & celebrate, & profiles of several trike riders–why they ride, what they ride, where they ride, even how they ride; photos of various trikes & their joy-filled pilots, location-shots from cycling adventures across the globe.
I’m thinkin’ you need your own copy, so thank goodness you can get one with just a couple of clicks. How easy is that? Even easier than riding a
bike trike :0) You can also buy a download for your iPad or Smart Phone & read Free on Three at rest stops on your cross-country ride. (talk about meta)
I’m booked for my first speaking engagement as a recumbent trike advocate at the Adaptive Cycling Roundtable that will be a part of Recumbent Cycle-Con. I can’t wait to meet all of these folks, put our hearts & minds & resources together to find any & every way to get as many people as possible–able-bodied & differently-abled alike–cycling in every hill & dale. I believe everybody deserves to feel what I feel when I’m out on the road, powering those three wheels with my own strength, making every ride an exercise in regained freedom, reclaimed ability & adventure!
I’m a writer, a poet, and a teacher. But in my former life (the one before MS) I was an actor. If, in acting class, I were given the exercise of embodying how riding makes me feel, it would look a lot like this.
So here’s to whatever makes your life rich & wonderful–those bouncy, shiny, breezy, wild, wonky, colorful, funky things & people & places & experiences which turn ordinary days into a well-lived, much-loved adventure ~
I only have till November 21st to reach my fundraising goal and I really, really need your help!