To tell you the truth, I didn’t know if I was going to make it to the Finish Line.

This has been a rough year health-wise. Not in terms of actual MS exacerbations–in fact those have been fewer than in any previous year–but in terms of pain and fatigue. We’re talking Off The Charts-awfulness.

Also, my vision has reached new lows. Double-also, the symptoms of gastropaeresis–a condition caused by MS–are worse than ever before; the pain from that source, alone, has been crazy-making. So my goal was to make it to the the Starting Line, pedal across it, and then make it through 26.2 miles, till my wheels rolled over the Finish Line.

I succeeded in my goal. Even though I don’t exactly feel triumphant.

My finishing time was almost double what it was last year, which, at certain moments, hits me square in the ego with a resounding *splat* and embarrasses me.

After last year’s marathon my first thought, my then-goal, was to shoot for what most racers shoot for: bettering their previous time on any given route. But as 2011 went on it occurred to me that I might not be able to beat last year’s time of 3:36:46. By this summer, given the way I was feeling, I began to wonder if I’d finish the marathon at all.

On my birthday (late August) I rode my favorite training route along the Texas City Dike and Skyline Drive. My birthday wish–made 5 miles out, in the middle of Galveston Bay, the end-point of the dike–was that I’d make it to the finish of the 2011 NYC Marathon. Actually, it was less a wish sent out to the universe, and more of a promise that I was making to myself. Luckily, I was able to keep it.

When I was sitting in the medical tent of the First Aid station, around mile 20, with a humongous ice pack on my left knee (wanting a way to ice my right hip that wouldn’t involve me sitting on a bag of hard-as-rocks ice cubes) there were a couple of things I kept sending–like they were on a visualization conveyor belt–through my mind. First was the firefighters that I was raising awareness and funds for as part of Team Leary Firefighters Foundation. I told myself that if those men and women could run into burning buildings when everybody else was running out, then I could keep pedaling forward through the pain and fatigue to make it the rest of the way to Central Park. I didn’t want to let them down. And I didn’t want to let the rest of my team down, either.

(those 3 red jerseys, those are my LFF teammates, tearin’ it up)

Second was all the good folks who donated to my race, to “my” firefighters. I had to honor the faith all those donors placed in me. I had to meet my end of the bargain we’d made: they give money to a worthy cause, and I give my time and energy, doing the leg-work on the big day–seeing it through till the last inch of the last .2 mile.

Then–okay, you’re going to laugh at me about this, I just know it–there were three “heads” on the conveyor belt of visualization rotating through my mind’s eye. (I tried imagining each person–the whole person–but seeing them sitting there, indian-style, like a piece of Samsonite waiting to be picked up at the airport, cracked me up more than it spurned me on!)

First up was my husband Gary’s face.

That guy really should have his photo in the Visual Dictionary next to “devoted.” He has been my partner, my cheerleader, my provider-of-all-things-loving-and-supporting. There’s no way I would survive life with MS without his constant presence, his unequaled friendship, his sideways-hilarious sense of humor. For sure, I would not be doing things like setting goals of finishing marathons without him. He’s always, Always, ALWAYS there to hold me up, push me forward, pick me up–figuratively and literally–when I fall down. I imagined him there. I heard his voice, saying “Go, Nise! Go!!!”

Denis Leary was the second face/head, because he founded this phenomenal foundation serving firefighters. Because he crafted this good and necessary way to help firefighters get the training and equipment they need to perform their jobs, to save lives. Because he conceived of this foundation out of a place of personal, devastating loss. Because he took that grief and transformed it, into a life-changing, life-saving organization. Because I had pledged to join Denis Leary in his never-ending quest to bring firefighters front and center, to get them the recognition, honor and gratitude they deserve. Team Leary Firefighters Foundation, the director of the foundation, Mardi Grant–they welcomed me, a challenged athlete who pedals instead of running (or even walking); they advocated for my right to not only be on their team, but to use a recumbent trike as reasonable accommodation for a disability.

I had thrown in with Leary Firefighters Foundation, they had thrown in with me when it counted most, and now it was my turn to do my part, to follow through. So I imagined Denis Leary’s voice saying to me, “Get the f*%k up!  Get the hell outta here–get out there.  Christ, we don’t have all day–MOVE!”  Or maybe it was Tommy Gavin’s voice

The next face/head was Michael J Fox. If you read earlier posts on this blog, you know that I claim him as my hero. He’s the person who helped me to reframe my life, my future, how I saw myself–what I was capable of–in relation to illness and disability. From his words, by his example, I learned to look at a life intersected with MS as a blessing rather than a burden. I learned to look for opportunities–to look closely and creatively, with a wide-open heart and mind–because those opportunities would often be disguised as challenges, as problems, as pain.

In 2002 I had the immense pleasure and privilege of meeting Michael J Fox when I was invited to be on the Oprah show and talk about why he was such an inspiration to me. Fox is still my hero; he continues to teach me by example and with his words. His face/head was on the merry-go-rounding conveyor belt to remind me that pushing through this particular day, this particular race, was an opportunity and a blessing. Even if the pain was so great and heavy a burden at the moment that I could not imagine it as either. So I conjured his voice saying to me, “Just keep going, you can do it!”

On the Oprah show that day, Michael J Fox got up out of his chair on-stage next to Oprah and came down the steps to the first row where I was sitting, to hug me. I don’t mean to get too schmaltzy here, but that embrace felt to me at the time like a real connection, an acknowledgement, a kind of tangible recognition. That we had both been to that place–the dark place where a life recently intersected with illness can take you–and we had both found a way to make it back out into the light, to carry the light forward with us.

The only difference being that Michael J Fox was the reason I’d been able to find that light. I basically followed the torch he carried; lit my own flame from his.

So I listened to his voice, telling me I could do this thing. I had the EMT cut the ice and plastic wrap off my leg, picked my torch back up again and headed out of the shade of the medical tent into the bright sun of the race-course with all the runners in their bright colors flashing by.

I told myself: you have to put your butt in the seat and keep going, because it’s possible that someone else needs to light their flame-less torch from yours, and you have to be out there, you have to push through the pain even though it feels impossible. If there are others stuck in the “I can’t” place–that quicksand of mental mud pit you’ve known too many times before–your light will be up ahead for them to see, to follow through to the end. All the way to the finish line.

Once I sat back in the seat of the trike and reached my right foot to the pedal, the pain in my hip shot forward like an arrow made out of barbed wire. When I raised the other leg and settled my foot into the pedal, that knee felt as if it were being dipped into a vat of boiling lava. I swear to you, I did not think I would be able to pedal another 6 or so yards, much less a single mile.

But I visited and revisited all my motivations for not quitting. I pushed the ON switch and watched the parade of those faces/heads again and again, pausing to take in what each one meant to me. I listened to all those not-real voices, each real but not-real personal message to me. And all of it, all of them–put together–got me pedaling again.

Here’s to both visual and audible hallucinations!

Hey, whatever works, right?

Thanks to everybody–the inspirational faces/heads on my conveyor belt-of-motivators. And each of you, for encouraging me, for being there, for helping me through ~

Remember, walk, run, pedal, towards the bright blue. Always follow the light. And don’t forget to be a carrier of light!  Because someone might need to follow you.

PLEASE SUPPORT MY EFFORTS IN THE 2011 NEW YORK CITY MARATHON WITH TEAM LEARY FIREFIGHTERS FOUNDATION

I only have two weeks left to reach my fundraising goal and I really, really need your help!

Please follow me on twitter via TXmoonspeak for updates & pics along my 2nd journey celebrating independence, going fast & freedom, what my body CAN do.

Don’t forget, you can leave me personal messages of encouragement & inspiration thanks to Asics (see last night’s post for details – it’s easy & FREE).

With this ride I claim health & strength & joy & being part of the choice to make a difference– to be a change-maker. I ride for all challenged athletes, for the guy who changed how I view myself (& what I’m capable of as a person whose life was intersected with illness & disability) – Michael J Fox. I ride for our nation’s fire fighters, who risk their lives to save our lives & get paid on average what a first-year public school teacher earns. But keep in mind how many of our cities have volunteer firefighters, doing the same work out of the goodness and generosity of their hearts.

Please, if you’re able, give to Leary Firefighter’s Foundation (link below, in red) in honor of my efforts in this, my second New York City Marathon ride. Last year I made history as the first person to ever use a recumbent trike as reasonable accommodation for a disability (MS). I’m hoping I won’t be alone this time, that in the wheeled & smiling crowd of handcyclists, racing wheelchairs & pushrims, I’ll spot another foot-powered recumbent trike. Soon, I pray there will be a fleet of us – enough to warrant our very own category!

Thanks for your continued support and interest in my story; it means the world to me to have a place to share, to have all of you good folks “listening.”

Come on, Finish Line–be mine!!!

PLEASE SUPPORT MY EFFORTS IN THE 2011 NEW YORK CITY MARATHON WITH TEAM LEARY FIREFIGHTERS FOUNDATION

I only have two weeks left to reach my fundraising goal and I really, really need your help!

I hope to do Team Leary Firefighters Foundation proud. It’s been a rough year for me in terms of MS-ness: worsening vision, pain and fatigue–just to name a few challenges. So I don’t expect to beat my time of last year’s race, as I was of course hoping and planning to do in my 2nd year of the marathon.

In truth, I imagine it might take me an hour to two hours longer. And that’s a best-case scenario. My goal, like last year, is to finish. That will make me happy.

You can send me encouraging messages during the marathon; it’s free!

Just go here & type in words of support, a haiku, the punchline of a joke or quirky oxymorons. Give me some words, thoughts, silliness, some XXXs & OOOs, to get me through the last miles of pedaling ;0)

Thanks to all of you for all of your support. I couldn’t have made it this far without you, that’s for darn sure. I’d love to see your names flashing on the board as I go by; that way, it’ll be like you’re all there with me!. So go ahead–you know you want to!–create a little special something for me to see and be cheered by.

PLEASE SUPPORT MY EFFORTS IN THE 2011 NEW YORK CITY MARATHON WITH TEAM LEARY FIREFIGHTERS FOUNDATION

I only have two weeks left to reach my fundraising goal and I really, really need your help!

I’ll always remember what you did to lift my spirits and enrich my marathon adventure ~~~

My hope is that anybody who might be enabled to cycle–again, or for the first time–by the adaptive/alternative three-wheeled goodness of a recumbent trike will see me participating in the race and know that they, too, can pedal. Whether around the neighborhood for a family ride, rehabilitation from injury or illness, or competing in athletic events.

There are so many people like me out there–no longer able to run or ride a bike–who are unaware that recumbent trikes even exist. Perhaps they’re vaguely aware of trikes but don’t realize the full import, haven’t connected the dots to figuring out that three wheels might be what gets them riding again, allows them to be active, facilitates an entire universe of independence, freedom, vitality and adventure. Having a recumbent trike, being gifted with a way to cycle again, being uber-blessed with the privilege of being a part of Team Leary Firefighters Foundation and participating in the most prestigious marathon the world-over has transformed my life in countless ways. To name a few:

I feel healthier and stronger, instead of sick and weak.

I see myself as capable and empowered, rather than broken and useless.

Instead of being the one who always needs assistance, who has to be in the position of asking for help–I’m now someone who helps others, who makes a difference with every day I get out there and train, with every dollar I raise for Leary Firefighters Foundation to provide much-needed training and equipment for firefighters.

Disability, the pain and fatigue of disease, can lead one to passivity, to overwhelming feelings of powerlessness, helplessness. Through riding a recumbent trike and being a contributing agent of difference-making and advocacy, I’ve transformed the way I view my place in the world, the way I live each and every day. I want everyone to have that same opportunity, to feel that same awakening and inspiration and confidence.

Please pass on this post, talk to your friends and coworkers, share via social media–any way you can think of to spread the word. The “word” is actually 2 things: recumbent trikes and Leary Firefighters Foundation. Both are change-makers. Both are solution-bringers. Both are making a difference in the lives of others who truly need it.

Thank you, Greenspeed, for allowing me to ride the as-yet-unreleased Magnum. A new trike model that isn’t even available to the public; the first Magnums for sale should roll off the production line and into the eager hands of waiting customers in early February. Trust me, you’re going to want one!

All marathoners who race as part of a charity team have to raise a minimum amount of money. I’m barely over the half-way mark to my $3000 minimum donation, the difference of which I’ll have to write a check for myself after the race. Not only am I teacher, right now I’m an unemployed teacher. So, please, I’m beggin’ y’all, donate whatever you can, if you can. Even the cost of a cup of Joe or a glass of zinfandel would be mucho appreciated!

Thanks for all of your encouragement and cheering-on; it means a great deal to me. Your support, along with the motivation of those firefighters desperately in need of the equipment and supplies to do their life-saving jobs, gets me moving and keeps me pedaling on the days when I don’t think the fatigue and pain are conquerable.

You can’t really see her in this photo–she’s just a light-infused smeary figure in the background–but that’s Lady Liberty behind me in the sunset. From the Staten Island Ferry last night, I watched her indomitable, unwavering glow as we crossed the waterway. I couldn’t help believing that my service dog Luke and the ability to cycle again via recumbent trike, those are my upheld symbols of autonomy. Of pure liberty. In all it’s glory and grace ~~~

PLEASE SUPPORT MY EFFORTS IN THE 2011 NEW YORK CITY MARATHON WITH TEAM LEARY FIREFIGHTERS FOUNDATION

I only have two weeks left to reach my fundraising goal and I really, really need your help!

Denis Leary, founder of Leary Firefighters Foundation (my team for the NYC Marathon) and co-creator of FX series Rescue Me, has teamed up with Jim Serpico, his production company partner, to make a documentary film about firefighters in Detroit.  Tom Putnam and Brenna Sanchez are the directors on the front-lines. It’s a powerful story, and our help is needed getting it out to the world.

Here’s the official synopsis for Burn:

BURN is a documentary about Detroit, told through the eyes of its firefighters, who risk their lives to save a city that many have written off as dead. Detroit firefighters have a front-line look at issues many American cities are just beginning to face. Along with the foreclosure boom, arson fires in Detroit have skyrocketed. The reasons vary: Homeowners desperate to get out from under mortgages, gangs and drug dealers out for revenge, bored teens failed by the education system. The end result is a city struggling to cope with one of the highest per capita arson and fire rates in the world.

Every shift, Detroit firefighters face injury, disablement, illness, death. But still they come back, day after day, resolved they can make a difference. And they do it with camaraderie and a remarkable sense of humor.  We have embedded with firefighters of the DFD and are following the Detroit story through their eyes. Our film explores human struggles, hope and personal courage in the face of overwhelming odds.

Until now, no one has properly explored these issues, and these heroes, with the depth and detail they deserve.

Take a look at this video to learn more about the project.  More about the film can be found here & here.

Please, spread the word any & every way you can think of; make a donation–any amount that you’re able–to push this film through production!

Not only is there super-cool stuff to be scored according to your donation amount (title credits, tickets to premier, swag) but a portion of the proceeds will go to Leary Firefighters Foundation to enable them to purchase equipment for the Detroit fire department.

Which gives you two  (2!) fab ways to support Leary Firefighters Foundation. My 2nd race as a member of Team LFF in the New York City Marathon is just days away, on this Sunday, November 6th. Please support my efforts,using a recumbent trike as reasonable accommodation for a disability (MS) in the handcycle division, to help raise funds & awareness for this phenomenal nonprofit organization. LFF is making a real, life-saving difference, in the lives of firefighters. You can too!

PLEASE SUPPORT MY EFFORTS IN THE 2011 NEW YORK CITY MARATHON WITH TEAM LEARY FIREFIGHTERS FOUNDATION

I only have two weeks left to reach my fundraising goal and I really, really need your help!

It’s a do-able thing, to lift your consciousness & spirit up & out of your physical being, ferry it just far enough above & away, to escape to a better place. Not easy, though.

Achieving happiness in the midst of corporeal misery is a kind of magic act, a veritable sleight-of-hand trick played between consciousness & corpus. There are times I’m pretty good at fooling myself: a distracting swish of the colorful cape, a flash of fire-sparks & dramatic puff of smoke, a redirecting of focus to someone or something else. But sometimes I’m simply not a very good magician. A lot of times I’m too mired in the crush of fatigue and the razor’s edge of pain to be capable of playing along with the games I devise to alleviate, to disguise, to enchant my imagination away to another, better, easier, plane of existence.

There are times that fooling myself can be dangerous. For example, when I was in NYC in September for the Leary Firefighters Foundation fundraiser (screening of the finale of Rescue Me & after party w/cast & crew), it was a long evening–on top of the stress of travel itself. From Texas. With a service dog. And by the end of the night I’d pushed my body to the limit of said fatigue & pain.

When I left the venue of the after party at 54th & 6th Ave, I walked Luke to Central Park for one last potty break before going back to the hotel. It was only a couple blocks but I was already nearing a wobbly level of exhaustion & agony. Oh, and it was raining. A little at first, which then turned into a downpour about a block from the park. It had been raining off and on  for so long in NYC that there were actually flood warnings in effect, which I found amusingly ironic since I’d come from the ravaging wildfires back home. The paved drives of Central Park were running rivers and the lower grassy areas of the park were swamps of mud. This meant that I needed to take Luke to the top of the hillier areas further inside the park to find a place for him to even consider doing his business. On the way up the hill, it was tricky, but we were okay. On the way down? Slip, crash-on-my-ass, slide, half-roll. Splash.

Thank goodness there was nobody lurking about with the videocam feature of his smartphone; my Cirque du Soleil mudslide antics would’ve become a YouTube viral sensation. Funny if you’re watching. Not so funny when you’re the one whose already weary and aching body is phuluphing across rocky, root-riddled ground.

This fall should not have happened. I never should’ve gone UP a hill in the pouring rain. I’m sure you’re wondering why I took the risk, why I put myself in a situation pretty much destined to end the way it did. An excellent query, and one I asked myself as I was performing those amazingly gymnastic, if spastic, cartwheels through the drenched flora of Central Park.

I won’t claim that I was exercising stupendous rational thought. In fact the “reasoning” that led me up the hill–besides the obvious, Luke needed acceptable ground to potty–lies in the alternate reality that I have to coax myself into with “magic.” In order to get through the evening I’d talked myself into that better-space, into the I’m-just-fine facade that I need to wear, to inhabit, to live-and-breathe like an award-winning performance. I become my alter-ego, the “I’m great, how are you?”–big smile, sparkling eyes, confident-and-cheery tone of voice–version of myself. Because it’s the only way I know to make it through a lot of days,  all the things I have to do, and the things I want very much to do, like this event.

Whatever’s a colossal challenge to endure with my MS’d body, I have to transform my mind and spirit, from the inside, out. “A la peanut butter sandwiches!” Except that I have a higher success rate than The Amazing Mumford.

What happened on top of that slippery hill in the rain with Luke was me doing too thorough of a transformation. Me foolishly believing the illusion I’d manufactured. I forgot to drop the persona when there was no longer anybody around to convince. Like an actor who goes deep into character and then forgets to climb back out of the story, the fictive world of fantasy, at the end of shooting a scene. I was so thoroughly into the I’m-just-fine&dandy zone that I forgot for a moment who I really am, what my body is, what it’s capable of and what it’s not. When you’re basically channelling all of your physical, mental & spiritual energy into creating & believing a lie–even if it is for understandable, right and good reasons–it’s next to impossible to “set aside” enough awareness of the truth of your condition, because, HELLO! that’s what you’re hiding from. Or at least hiding from yourself.

Sometimes I work so hard to not limp or to lessen the degree of my limp that I plumb wear myself out. It’s wacked, I know. But the thing is when I’m exhausted and in pain and moving along in public with a pronounced limp, it’s as if my body’s condition is too clear, too obvious, too real–and that self-awareness, the self-observation that I cannot ignore, makes the pain burn brighter, the fatigue feel twice as heavy. So I lie to myself, most of the time. I fake it, just about every day.

Which, I guess if I’m being honest, means I’m lying to whomever is watching me, too. This is a problem, a quandary & a paradox, a Catch 22 of a mess for someone who strives to live an authentic life.

And then there’s this.

Like many other people who live day-in & day-out with chronic illness, pain, fatigue, a variety of invisible symptoms, I’m often accused of pretending, of acting sicker than I am, of using my illness or disability to get attention or to manipulate. Even (especially?) members of the health care industry are dubious of what they can’t see. You might say it’s part of their job, to be suspicious. But what’s the cost of not taking a human being’s suffering at face-value? How many people’s suffering has been made all the worse because the severity of their symptoms is doubted by co-workers or acquaintances, friends & family, doctors?

I don’t know about you, but nothing makes me feel more desperate than not being believed.

Being accused of faking it or flat-out lying ties me up in knots twisted upon knots. A sick and sour tangled tumbleweed.

Yet here I am, fully admitting that I lie & fake it through each day. Of course I’m aiming the charade, the veiling & slanting of truth at myself rather than others, but the fact remains that I’m generating a pretense. Even though it’s for my own benefit, even though it’s the very thing that lessens the awfulness, even though my act is presenting a more-okay version of myself. Still, at it’s essence, it’s an act. I am not being authentic. Because it hurts too much (literally, not figuratively) to be completely genuine.

I guess that’s why I sometimes flush & turn away or lower my head when someone subtly (or not so subtly) alludes to the idea that I’m faking it. Because I am. Just not in the direction or with the nefarious intentions they believe.

I’d love to tell you that the rain-slick grass-skiing limbs-flopping mud-swimming down hills in Central Park is an isolated occurrance. (god, would I love to!) But it’s not. Not by far. Various versions, usually to a less dramatic/comedic degree (thank the America’s Funniest Home Videos gods) happen more than I want to admit. I’m so busy doing that “fake it till you make it” thing to trick myself into feeling more able, healthy, and fine than I really am that I fool myself too far too often. But if it weren’t for my exceptional self-deluding skills (really, I’m at black-belt level, there should be a prize!) I wouldn’t be doing a lot of things, having a lot of experiences, that make my life as rich & rewarding as it is. Like traveling, going to writing workshops & book fairs, volunteering, being an active member of my local TED community, participating in the NYC Marathon, fundraising & advocating for causes I care about.

Multiple sclerosis is something that you cannot see when you look at me. Sure, you can detect the slight limp (that’s more pronounced when I’m in worse pain), the wonkiness that betrays my struggles with balance & equilibrium, that I’m a bit slower in pace than the average bear when walking along. But most people don’t really seem to notice. Largely because they’re distracted by the cute fluffy service dog alongside me (& who can blame them?).

Even then, many people don’t realize that Luke is my mobility assistance dog. They often make the assumption that I’m training him for someone else. Sometimes when I tell people that Luke’s my service dog, that he assists me in areas of balance & stability (among others), they do this thing–a kind of visual reevaluation. It’s the kind of once-over, from head to toe, that is usually reserved as behavior for guy-objectifying-attractive-woman in the movies or on television. In my case, it seems people are trying to assess, to pinpoint with their eyes, any noticeable signs, proof of, affliction. After the quick limb-by-limb inspection, people have been known to say the darndest things. If I had a kitten for every time I’ve heard a variation on the phrase, “Well, you don’t look sick/disabled/like you need a service dog!” I’d be a feral cat colony the size of Australia. I kid you not.

Is it supposed to be a compliment? When someone says that I don’t appear ill, disabled, in need of a service dog or the recumbent trike that I ride, or the handicapped placard that I sometimes use when the MS symptoms are raging. If I were to use the hands of all of Snow White’s dwarfs to count how many people have suggested, or said straight out, that I don’t look like I have MS, I would run out of Hi-Ho-ing Off-to-work-going fingers.

What does that really mean, when someone says I don’t look like I have MS? As if the not-looking-like-it is something to be commended or rewarded. I cannot figure out what I’m meant to feel. What I usually say is something like, Oh, thanks? Because I don’t know what the “right” answer, what the polite response, is.

Many of those comments come along with a tone of voice & facial expressions that convey skepticism, accusation. Or at the very least, a kind of distanced wariness that seems to be the result of encountering a real life example of “one of these things is not like the other.”  The “these things” and “other” being the way people expect someone with a disability and/or illness to look versus the way I look standing before them.

Where did this idea come from, that we can tell who is ill or disabled, burdened by fatigue or pain, merely by looking? And what about the idea that all of us of the ill, disabled, battling fatigue and pain ilk somehow look the same?

A guy who happened upon my blog recently sent me a message saying that, from the photos of me posted, I look healthy enough that I shouldn’t need a service dog. He suggested that since service dogs are in such high demand, so expensive to train, and there are so many needy, worthy folks waiting for one, I should give Luke to someone who would make far better use of him. Seriously?

This guy isn’t the first person to suggest that I don’t need a mobility assistance dog or that I should give mine to someone who truly does need one. Like I said before, people say the darndest things.

“Darndest” being my way of sugar-coating. When what I really mean is that people say insensitive, offensive, ludicrous, demeaning, harsh crap, quite frequently. Most of the time they don’t even seem to have a clue how hurtful their words are. Or the level of ignorance and lack of compassion they are displaying. I never know how to respond to the naysayers. No matter how many times it happens, it’s always like the first time, and I find myself a version of shell-shocked by someone’s comments.

I’ve never really known how to deal well with confrontation. I always find myself overwhelmed with that being put on the spot rush of adrenaline; I feel embarrassed and I’ve been told I look guilty, like I’ve been caught. I do feel caught. But more like in a trap.

I still don’t know how to stand gracefully in the face of being angered or disappointed by an uncomfotable exchange and call someone on a lack of curtesy or cavalier unkindness. But I do know this. What you see & how I feel don’t correspond. When you diminish or dismiss the realities of my day to day life with MS, I feel like you’re saying the truth of who I am, how I am, whatever level of illness/health, ability/disability that I’m currently experiencing, is not acceptable, not welcome.

Of course, what’s crazy and even to some extent hypocritical about me being desperate for you to see me–the reality of who I am & what it’s like for me living this life with MS–is that at the same time I’m dying for you to see the truth I’m also, simultaneously, more than likely playing that hiding-from-reality and fake-it-till-you-make-it game with myself.

See me! Don’t see me! How mixed up is that? Yeah, welcome to my world. (an okay place to visit but you don’t wanna move here)

The survivalist lying to myself is also a kind of lying to the people closest to me. Because in the same way I want to protect my own psyche from being fully aware of the extent of pain/fatigue/balance or vision-worsening issues on any given day, I also (even more so) endeavor to protect those I love, the ones whose nature & habit it is to worry about me.

My life is a Farce & Irony Parade. Nine times out of ten, I’m pretending–with every trick I know–to show that I feel better than I really am. (I’d say 10 out of 10, but the truth is that I don’t always have enough energy to pull off what I intend)  Eight out of ten times, when asked directly, I lie; I round up with my rose-colored arithmetic & tell you that I’m in a far healthier, much more comfortable state than is true.

I have to believe my own magic act to get the relief I need to get through each day. I want you to believe me when my necessary pretense has me deceiving you, saying I’m OK (when I’m not), because I don’t want you to worry. And also because when you believe, that reenergizes and reinforces my belief.

What a mess. I feel horrified, betrayed, furious & grief-stricken when I’m accused of faking it, of lying. I feel ashamed, too, because maybe–just maybe–I can’t justifiably cast blame against someone for questioning whether it’s my face or a mask, a costume or my real clothes, a character or the authentic me, they are seeing.

Lordy, this is complicated stuff.

Colleagues, acquaintances, here or there someone I thought was a friend, even a family member or two, have accused me of overstating the level of pain & fatigue, the hardship or severity of other MS symptoms. Like many (far too many) people who suffer with the affects/effects of chronic illness, I’ve been told that I exaggerate, that I trot out my “symptoms” only when it’s convenient for me or to get attention. The worst part of those accusations is that a couple of times they have come from the very individuals whom I have most trusted, confided in, opened up to about the severity of my distress. (more about this in a future post about the kind of bullying that goes on in work & academic settings . . .)

I have a hard time asking for help. It’s not about ego, but about being so wrapped up in & invested in the machinations of playing those mind-games with myself about how well I’m doing (so the realities won’t consume me) that I have to strip all the chicanery, all the distracting theatrical, imaginative devices away in order to experience a vulnerable enough spirit to acknowledge, to accept, that I in fact need and desire help.

That raising of the house lights in the theater, the breaking of the fourth wall, the dismantling of the fantasy that keeps me going & keeps me sane–it’s a scary place to be. Because there’s nothing but the truth there. Which is too-real. Too physically pain-filled, too weary-leaden, too anxiety-ridden, too lonely & isolating. So, when I risk that stripping away and ask for help, when I finally and wholeheartedly put my trust in someone enough to tell the truth–no special effects–about how I feel, it’s devastating to not be believed. I feel more than naked in that place; I feel absent of the protection of flesh; all raw, open nerve-endings.

I deal with these faking it/authenticity issues as part & parcel of having MS, but the flames get fanned whenever someone calls into question, directly or indirectly, whether I really need & deserve to have a service dog, whenever I get an indicator from someone that they’re dubious about my level of pain, fatigue, disability. And when I’m in a rough patch health-wise as I have been in terms of fatigue, pain & vision issues of late, my indignation–righteous & rightful or not–can take off like one of those Texas wildfires.

I’ve gotten several comments in regard to my participation in the NYC Marathon with Team Leary Firefighters Foundation that revolve around the idea that if I can ride 26.2 miles on a recumbent trike, it must not be that hard–my life, as it’s affected by MS, must not be all that hard. And those remarks leave me feeling perhaps less “seen” than I have ever felt, because training for the marathon last year and again this year is beyond “hard.” Every single day was already hard. Adding the rigorous schedule of training pushes me to, and sometimes past, my limits. A lot of days I don’t think I’m going to make it; a lot of days I’m sure I’ll have to bow out of the marathon.

I’m not doing this for a cheap thrill, to have a great conversation-starter, or to have something novel to add to my resume. I’m doing it because I believe in the nonprofit I’m raising funds and awareness for–Leary Firefighters Foundation. I’m doing it because I want others like me to know that in spite of a life being intersected with illness and daily, almost-unendurable pain and fatigue, you can still make a difference. You can still make your dreams come true.

All it takes is enough self-conjured magic to make it to the only day that matters: race day. And on that day, well, you just ride. And it doesn’t matter how you look or who believes what. You pedal until you can’t anymore. Hopefully it’s enough to get you across the finish line. Last year it was. This year, well, we’ll just have to find out.

It’s well worth it. But it is not, by any means, easy. Believe that.

See me.

If you’re able, please support me! You can donate to my race as a member of Team Leary Firefighters Foundation right here.

It’s the brand new addition to the Greenspeed family of recumbent trikes, the Magnum. You can find initial reviews of it by Steve Green of Trike Asylum fame here, and first impressions from Bryan Ball of Bent Riders Online fame here.

I’ll be doing a review myself, the first 26.2 miles of which will be clocked via the burroughs and bridges of New York City during the most prestigious marathon in the world on November 6th when I ride as a member of Team Leary Firefighters Foundation.

Am I a lucky duck or what?

When I set eyes on the Magnum out by the test track of Recumbent Cycle-Con, I was first attracted by the sparkly purple paint color. I know, I know, I’m such a girl–I can’t help it! Then I noticed the beefy Big Apple balloon tires and the hardiness of the fame, the way the seat sat differently in its connection to the base. I was immediately intrigued by the obvious design differences. Not just in comparison to the rest of the Greenspeed line, but to all other trikes I’d ridden, and to every other trike I’d passed on down the line at Recumbent Cycle-Con. In fact, Greenspeed sat in the very last spot of test-riding booths, so I’d walked by everything on two, three and four wheels that was being exhibited.

While the effervescent royal color of the Magnum is what first captured me and drew me in closer, the paint job soon faded from focus as I took in the other details of the trike. With each new, closer inspection–I actually sat on the asphalt to examine the undercarriage better–I was seized with profound fascination, wondering how the trike would ride, how much comfort it might lend this ouchy body of mine, and whether it could possibly be fast and quick-handling given its appearance of sturdiness.

The short answer to those questions, and the teaser of my forthcoming review, is this. Greenspeed founder and designer Ian Sims has created what I believe is the first trike to truly be at home on both the shifting, rough, uneven surfaces of trails as well as the open road. I realize other trikes make the same claim, but so far I’ve not ridden one that lives up to the promise. So I’ll let you know how the Magnum fairs after thorough test rides on both roads and rocky trails.

The Magnum has some chief advantages for trail-riding. The ground clearance is phenomenal, a full 5 inches. For all it’s strength the trike responds with the precision of a much lighter vehicle. She won’t be the fastest horse in your stable but she is not–by any means–going to be hanging at the back of the pack. For all her strength, she’s quite lean.

The seat on this trike does what none other can accomplish: it adjusts not only in angle, but in height. Which means you can ride the Magnum with the seat at its lowest point, allowing you to go faster–or at its highest, giving you greater ease for getting in and out of the seat, and better visibility by others out on the road.

Most of all, or I should say best of all–for people like me, anyway–the Magnum manages a supreme level of comfort that rivals suspended trikes. But it does so without the added cost, weight, and possibility of malfunction (or replacement) of that additional piece of technology. I find this to be an absolutely revolutionary design feature.

Please support my ride in the NYC Marathon as a member of Team Leary Firefighters Foundation! You can donate right here

Luke & me with Deanna from the Greenspeed team

(photo courtesy of Travis Prebble, Recumbent Journal, Recumbent Cycle-Con photographer/videographer/reporter extraordinaire )

BURN- The Detroit Firefighter Documentary by detroitfirefilm — Kickstarter

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http://www.kickstarter.com/projects/detroitfirefilm/burn

ABOUT THIS PROJECT

Every shift, Detroit firefighters face injury, disablement, illness, death. But still they come back, day after day, resolved they can make a difference. And they do it with camaraderie and a remarkable sense of humor.  We have embedded with firefighters of the DFD and are following the Detroit story through their eyes. Our film explores human struggles, hope and personal courage in the face of overwhelming odds.

Until now, no one has properly explored these issues, and these heroes, with the depth and detail they deserve.

BURN is produced and directed by Tom Putnam & Brenna Sanchez. Executive Producers Denis Leary & Jim Serpico (“Rescue Me,” Apostle Films)

What We’re Doing

We’re raising money to finish the documentary! The film is 95% shot, and 70% funded. We need to meet (or beat) our fundraising goal to cover post-production costs to finish the film in time for a festival premiere in Spring 2012. After that, the film stands to follow the path of our previous documentaries: Theatrical release, DVD and broadcast.

Why We’re Doing It

We started the project in December 2008, after the death of Detroit firefighter Walter Harris, who perished fighting an arson fire in an abandoned house. Everyone can agree — public safety is a national and local priority. But fire, police and EMS across the nation are struggling with intense budget cuts to gear and manpower. Although our film is about the Detroit Fire Department, the DFD faces issues that can now be found in nearly every major American city. Our goal is to share their story so that everyone can appreciate and value their first responders, no matter where they live.

Lo & behold, I’ve been passing right by the very kind of place that Leary Firefighters Foundation provides for firefighters.

OK, I didn’t mean to take a photo of firefighter butts. But, they were there. And I was there. I couldn’t help myself.  My iPhone just snapped the photo completely of its own accord. I swear!

Now, this photo, see, I was actually aiming at the building. The firefighters were in my way. What can you do?

I wasn’t even aiming in this picture. I was simply holding my iPhone & my thumb must’ve brushed across the little *SNAP* icon thingy. Total accident. (those touch-screens are so sensitive, you know?)  That guy in the far left corner of the frame, with the really big hose, he looks very happy to be training, doesn’t he?

Look, actual fire happening!

These were training exercises for the fire science school at College of The Mainland. The facility in League City is used by several local training programs.

Sam, the Chief.

Stop it! I was focusing on his shirt, people, his shirt. Geez.

OK, last completely incidental firefighter-butts-on-parade shot.

Don’t ask me what the guy in the window is taking photos of; I told him he was shooting from the wrong side.  (is it just me, or does he look slightly Rapunzelesque up there?)

Did you know that Leary Firefighters Foundation has donated state-of-the-art training facilities in both Worcester, MA & NYC?

Worcester Fire Dept. burn tower

The High Rise Simulator for FDNY

& the Flashover Training Ctr. – both at the FDNY training academy on Randall’s Island

I’m crazy-proud to be a part of Team Leary Firefighters Foundation–to have the privilege of raising funds & awareness for them with my ride in the NYC Marathon via recumbent trike in the handcycle division this coming November 6th.

How lucky am I?

How lucky we all are to have LFF helping firefighters so that they can better serve our communities. Thanks for all you do Leary Firefighters Foundation!!!

PLEASE SUPPORT MY EFFORTS IN THE 2011 NEW YORK CITY MARATHON WITH TEAM LEARY FIREFIGHTERS FOUNDATION

I only have 3 1/2 weeks left to reach my fundraising goal and I really, really need your help!

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.

Okay.

A couple bits of news:

Steve Green‘s new book Free on Three is out and getting great feedback & reviews!  I feel incredibly privileged to be among the contributors.

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)

And

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.

I love riding the way my service dog Luke loves tennis balls & beaches.

Which is to say that without them, life wouldn’t taste nearly as sweet.

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 ~

PLEASE SUPPORT MY EFFORTS IN THE 2011 NEW YORK CITY MARATHON WITH TEAM LEARY FIREFIGHTERS FOUNDATION

I only have till November 21st to reach my fundraising goal and I really, really need your help!

I want everyone to know, to see, to bear witness to, to spread the word of, recumbent trikes. Because if you’re in any way compromised in body, if you’ve had the joy of movement and exercise, the community of recreation, athletic participation and competition excised from the realm of what you consider possible in your life – then you need to know a recumbent trike just might be able to give all of that back to you.

Or perhaps even grant it to you for the very first time.

I don’t know about the rest of you, but I’m one of those who usually has to see something in action in someone else’s life before I can envision it as even the remotest possibility for myself. I think that’s the root of inspiration, the way we watch another living out his dream, and then become so chock-full of a burning desire to have that for ourselves that we borrow that person’s made-real dream as the seed and starting place, the foundation upon which we build our own dream. I guess you could call it dream-stealing. And if you were to call it that, then you’d have to characterize me as a Grade A Dream-Stealer, that’s for darn sure.

So, yeah, me:  Dream Kleptomaniac.

Dream-Stealing is how I ended up with an MFA in Poetry, got partnered with a service dog, created a poetry in the schools project, and became the 1st person to complete the NYC Marathon using a recumbent trike as reasonable accommodation for a disability. I’m not listing these things to toot my own horn, but to demonstrate that this stealing of dreams process actually works. I’ve made manifest several goals/dreams, and you can do it too.

I urge all of you, everyone I know and you know, to try it out for yourselves. Because it’s the kind of stealing that’s not only legal, but downright necessary to live an out-loud, coloring outside the lines, wild and wonderful, authentic life. How ironic and yet perfect is it, that when we take inspiration from others, we fuel the essence, the growth, the colorful bud-bursting and life-force blooming of what is most original, special, unique & glorious inside of us?

Learning and putting into practice the art of dream-stealing will take you to places you never could’ve imagined you’d travel. Because when we plug into the dreams of others, when we avail ourselves of the wisdom and experiences, energy and courage and stories of those around us, what we do is craft acommunity of hope, imagination and innovation, creativity and camaraderie, compassion and loving-kindness. A kind of collective karma that is far stronger, more dynamic and more transformative than any earthly power.

I’m not talking about religion; I’m talking about connection. Dream-Stealing is kind of like using the realized dream–the evidence that this thing can be done–from someone who’s in fact done the thing. Premise: this has been done by X, therefore, if X can do it, then so can I. Conclusion: I can do this. Mantra? (Yes, we all need a mantra when going about the dream realization business) Mantra: I will do this!

In “stealing” dreams, you don’t take the mere idea of the dream, you take the whole thing. Most importantly, The Proof. Which is to say, along with borrowing someone else’s dream, we borrow the faith she possessed to bring that dream to fruition. Dream-Stealing is, at its heart,  Belief-Borrowing.

I think when we watch and listen to the stories of others, we often become co-conspirators in their dreams. And, in turn, their dreams often fuel our own. In watching and listening to the stories of those around us, we invest ourselves, we make ourselves a part of, we plug-in. We encourage and cheer-lead.

In sharing our own stories, we allow others to link into our dreams, we open the door–our minds and hearts and lives–to communion, to community, to Us and We. Which will always be greater and more powerful than Me and I. When we share our life stories, we’re basically making donations to the collective resource pool. The pool of possibility.

Think of it as a kind of Wishing Well, if you will, where anyone might look in and see, imagine, dare to dream. And once a glimpse of the possible-made-real from your story, your life, is had, the possibility and proof take root. A little of that other person’s dream-story mixes with yours, making it hardier. Your dream grows the way all of our stories grow, into something unique, fueled by our individual talents and desires and way of seeing the world. These stories begin with the seeds of other people’s dreams, the echo of their voices. But each story blooms and branches, grows and reaches, is fed and shaped and informed by a singular, sacred voice.

Your voice. My voice.

So, what’s your dream?

***Find inspiring stories, examples of dream-stealing & belief-borrowing, in the hyper-text links above!

PLEASE help keep my dream alive–

SUPPORT MY EFFORTS IN THE 2011 NEW YORK CITY MARATHON WITH TEAM LEARY FIREFIGHTERS FOUNDATION

I only have till November 21st to reach my fundraising goal and I really, really need your help!

The thing about a recumbent trike that radically changes how you see the world–

the point from which you take everything in–

is its low seat-height.

Another factor is that you’re traveling at speeds far slower than you would be if you were sightseeing in a car. Wildlife doesn’t scatter for a curious woman on three wheels the way it does for a motorized vehicle.

And there’s the fact that, unlike a regular diamond frame bike–where your body is bent over, your shoulders are hunched and you’re often looking down at the road or straight ahead–a recumbent allows a relaxed, laid-back position, with your head up and your eyes able to travel a much wider field of vision,

as far right and left as you choose to peruse. Without any fear of crashing into something just because you’ve turned your head.

On a recumbent, I see a lot of sights I’ve seen before,

and think I know well. And yet I’m given the opportunity to see it all in a different way.

Of course I encounter that which I’ve never seen before, too, because now I’m at eye-level, discovering what was previously unnoticed or obscured, or simply skewed & diminished with the speed of a car or the full height of my walking-along body.

Because I was on a trike I noticed creatures, furry and running and leaping, in shallow water on the beach side of the Texas City Dike. I’d driven the dike many times, but never noticed dogs romping there before.

Which is why Luke now has a new beachy place to play, and has made new friends.

And learned how to fish along the shore.

I just have to say, I’m loving the world this way.

All of these photos were taken in Texas City on Skyline Drive, which runs along Galveston Bay and Moses Lake, and on the Texas City Dike which connects to Skyline Drive–giving a glorious ride of 20 miles round-trip.

It’s less than 90 days to the New York City Marathon and my ride with Team LFF! Please donate if you’re able, and please consider passing the link along to others who may want to support my efforts to raise funds and awareness for this life-saving, life-changing organization. Leary Firefighters Foundation champions firefighters and their families. By helping firefighters get the equipment and training they desperately need, LFF is helping communities, helping firefighters save homes and property and lives everywhere.

PLEASE SUPPORT MY EFFORTS IN THE 2011 NEW YORK CITY MARATHON WITH TEAM LEARY FIREFIGHTERS FOUNDATION

I only have till November 21st to reach my fundraising goal and I really, really need your help!

As in my training for the NYC Marathon & the fundraising for Team Leary Firefighters Foundation!

This week I’ve begun riding 30 miles on my long rides instead of the previous 20 mile average. (lots of icing of knees & hips going on over here, I can assure you)

It’s about 90 days till the race on November 6th, exactly 90 days from when I’ll begin to taper off on the training in order to store up energy, rest my joints & muscles for the big day.

I’ve got some exciting ideas for fundraising this year: an Etsy shop with all proceeds going to Leary Firefighters Foundation & a ride by all of the firehouses rebuilt with the help of LFF in New Orleans in the wake of Katrina, are among my plans.

My fundraising page for this year is set up with the basics already, and I’ll go back to fill in more text and the official “appeal” later. You can still access the 2010 Active.com listing, as well, though the donation link will only work on the 2011 page.

Please let me know if you have any fundraising tips or event ideas for me; I want to give my all in both training and fundraising efforts for this year’s participation with Team LFF in the NYC Marathon.

Thanks in advance for any support, and for all of your encouragement! Last year’s marathon was a blast on top of being a dream come true. How lucky am I?

PLEASE SUPPORT MY EFFORTS IN THE 2011 NEW YORK CITY MARATHON WITH TEAM LEARY FIREFIGHTERS FOUNDATION

I only have till November 21st to reach my fundraising goal and I really, really need your help!

I almost missed the start of the race.

Even though my team was Leary Firefighters Foundation I was really not going to be racing with them. Since I was riding a recumbent trike I was put in the handcycle division, which had an earlier starting time by about an hour. Had everything gone according to schedule the difference in start times wouldn’t have been an issue. But of course things did not go according to plan.

Several emails and phone calls (OK, OK, dozens, is more accurate) had gone back and forth prior to the marathon in attempts to figure out the logistics of what had never been done before, at least by Team LFF—how to get a woman and her trike and her 80lb service dog comfortably and safely transported to the start of the race. Would the trike even fit on the bus? Not to mention, who would care for said service dog while said woman was participating in said race?

Gary would be there to root for me and hopefully get some photos, rushing from place to place for sightings, but the crowds and subway would be potentially dangerous for Luke. Luke and I have trouble navigating around the tourists and citizens of NYC on a good day; marathon day would be prohibitive in the extreme. In large groups of moving people sightlines are usually just that, at eye level. People, in general, aren’t expecting there to be something or someone traveling at knee or waist height. Which means that poor Luke gets bumped into and stepped on by accident. And often that translates into me stumbling or falling as well. NYC folks are fast and focused on their destinations. Many of them are talking on their cell phones or listening to iPods so they don’t hear when I try to warn them about an impending collision with my furry companion. The teeming clusters waiting to get on and off the subway seem in some kind of hypnotic zone, paying even less attention. Guess I don’t have to tell you that a fall on the stairs or the train platform is decidedly more dangerous. Suffice it to say that Luke + NYC Marathon crowds = Not a good idea.

At long last it was determined by Mardi & Sharon (from LFF) that the trike would indeed fit on the bus, a kind firefighter or teammate would help manhandle the trike on and off for me, and a volunteer would take Luke back to the hotel where the after-parties for NYPD & FDNY were being held. I would meet up with Gary after the race near the finish line and he would accompany me back to the hotel. If I were too fatigued to ride any further, then Gary would put me in a cab to the hotel and drag the trike back. If for some reason Gary and I could not find one another after the race in all the crowds and celebration and confusion, I would find an NYPD or FDNY volunteer and someone would radio for another marathon volunteer to help me out.

- That’s Sharon, Mardi & me in the photo, right.

A plan was in place, so on race day morning as we began to board the buses to Staten Island for the start of the race, Mardi Grant introduced me to Lucas, an LFF teammate, who’d be helping me with the trike and then take Luke when I got to my starting area and deliver him back to Mardi or someone else who would get him to her. I was a little concerned—not that Lucas or Mardi wouldn’t take excellent care of my boy—but that perhaps Luke might be anxious. The only people he’s ever been handed over to the care of are Gary or the vet. Luke and I do everything together. So I worried a bit, like a mother dropping her kid off with a sitter, I suppose, that Luke might miss me or be anxious. I worried that he might be worried about me, which he so often seems to do on the few times that we are very rarely apart from one another.

Sitting on the bus next to Lucas was a good thing because it gave us a chance to visit and get to know one another a little; it also gave Luke some time to get used to Lucas’ voice and smell and touch. It gave me the opportunity to witness their interactions, all of which reassured me completely that Luke would be fine. Besides, I figured the name Lucas was a good sign. That just so happens to be one of Luke’s nicknames.

Lucas and I talked about running shoes—Brooks for me, Mizuno for him. (I pretty much live in running shoes for the cushion factor, to mitigate joint pain. And, truth be known, I think running shoe manufacturers should hire me as a test person because my damaged hip & knee joints can discern–with superpower speed & accuracy–what the cushion/comfort factor of any given shoe is. This could be called the gift on the flip-side of the painful joints curse. Or, it would be a gift, if I could actually get a shoe-testing gig!)

Lucas and I discussed why we’d chosen to be a part of LFF & how we’d first come to know of the foundation. He learned about LFF from an annual comedy fundraiser that Denis Leary does with Cam Neely (http://www.camneelyfoundation.org/) of hockey fame. I learned about LFF through following Michael J Fox, who’d been a guest star on Rescue Me. Some media piece about that role linked to Denis Leary and that led me to a benefit that both Fox and Leary had done for LFF.

– Luke & Lucas celebrating post-race in photo, left.

As I’ve mentioned in this blog before, Fox is one of my heroes, the reason I went from feeling victimized by MS to becoming someone convicted of the need to create a fulfilling, joy-infused, juicy-good purposeful life in spite of MS. I was secretly hoping that I might spot him on the sidelines of the marathon. I know that he shows up to cheer for Team Fox and I wanted to catch sight of him, to wave Hello. I wanted, in my heart of hearts, to pretend that he was cheering for me, too. Just for a moment. I wanted to imagine that my hero would see me doing this thing, this wild lark of an adventure. Without his example, I never would’ve even thought to strive toward recapturing a dream that every ounce of common sense said was unlikely, unreasonable, unadvisable.

Our bus full of Team LFF and other FDNY racers was still sitting in front of the hotel. In fact hadn’t budged a foot. A little trickle of sweat edged along my spine, joined by the first niggles of electrified fear that I might not get to my starting area in time if we didn’t depart for Staten Island very soon. Like, now.

Lucas and I talked more about LFF and Denis Leary and Michael J Fox and Achilles Foundation and hockey (he was surprised someone from Texas was a hockey fan & knew of Cam Neely, which sent me off on fond memories of Houston Aeroes games and my crushes on Gordie Howe & Wayne Gretzky). Then it seemed a natural segue to go from hockey, to injuries. Both of us had managed to hurt ourselves in the days prior to the marathon. Hearing our  tales, the young woman sitting next to us chimed in with her injury story too. Then, as if on cue, each of us reached for the part of our body that was afflicted!  I bore *three* sore/slightly-maimed bits. So my hand kind of levitated in the direction of my legs, then floated back downward and rested again on Luke’s golden furry head.

A couple days before leaving for NY I was putting my trike into the back of Gary’s SUV and lost my balance as I bumped the front end of the trike against the front seat. The tires bounced and the trike rolled back out and onto me, trapping me there on the asphalt of my street. (a very humbling & embarrassing moment) I finally managed to maneuver from under the trike, but I pulled groin muscles on both sides in the struggle. Uhm, owww. If that wasn’t enough, I followed up the Woman VS Trike wrestling incident with an act of more-than-slight-stupidity.

Once in New York City I took a cab to the office of Leary Firefighters Foundation to pick up my team jersey. From there I planned to walk up to Madison Square Park where a popular dog run is located, give Luke a romp with some other dogs while I drank some hot tea or coffee, then take a bus over to the convention center to get my racing bib & bag, as well as check in with the folks from Achilles Foundation who’d helped me with a lot of things leading up to the race—most especially with advice and encouragement when I was petitioning the race officials of NYRR for permission to use a recumbent trike as reasonable accommodation for a disability.

Meeting in person and visiting with Mardi Grant and Sharon Badal was great fun and I wanted to hang out with them and welcome the other team runners as they came to pick up their jerseys, but I had a big day ahead. The walking and bus-riding and convention center navigation was not going to be a piece of cake by any means. Especially since I was already sore from the airport travel and flight and still-grumbly previous injury. Mardi & Sharon gifted Luke with his own LFF T-shirt which he wore proudly as we walked through the city and up to the park, just a mile and a half. A couple of people even stopped to ask us about the text on the shirt and I was thrilled to have an opportunity to talk up Leary Firefighters Foundation.

All the team members of LFF were given a shopping bag full of goodies donated by sponsors and other donors to the Foundation—swag score! With hindsight, I should’ve asked if I could leave the bag there and pick it up the Monday after the race. But I didn’t even think about that until I was a couple blocks away and juggling the bag from one side to the other, alternating the hand holding onto Luke’s leather harness. The walk wasn’t too great of a distance, not under normal circumstances, anyway. I often walked twice that with Luke around Memorial or Herman Park at home. But neither was I usually carrying a bag with extra weight. And then there were the pulled groin muscles which hadn’t felt too rough earlier, but began to feel warm and tweaked the further I walked carrying that bag.

I’m not sure if it was the distance plus the weight of the bag, or the slightly altered way I’d been walking since straining the groin muscles, or maybe it was all of that put together. And of course the real consequences didn’t manifest until later that afternoon when the muscles and tendons on the outer side of my shins began to tighten, gather heat & throb. I went into immediate R. I. C. E. mode: resting, icing, compressing and elevating. But I could tell from how much it hurt so soon that I’d really managed to mess myself up. Like I said, more-than-slight-stupidity on my part. This was Friday, and the race was early Sunday morning. What had I done?

Finally the bus began to move and get us going to Staten Island. It was pretty heavy traffic and a lot of detours were necessary because of road and bridge closures due to the marathon route. By the time we finally pulled into the long line of busses carrying other teams and racers on the island, I was 15 minutes away from my start time for the handcycle division and I could actually see handcylists warming up, doing some test runs on the bridge. We were far enough away that getting off the bus and trying to trike there wasn’t really an option, especially since I had no idea where to go. The people directing everyone to their start areas were up at the drop-off area—several lengths of busses were ahead of us with other vehicles staggered in between and masses of racers crossing at intervals.

Lucas attempted to calm me down and help problem solve the situation. I tried to reach Mardi—who was riding on another bus with the rest of our group—to ask for her advice, but I didn’t get an answer. Lucas and I decided that as soon as the bus stopped we’d get off with Luke and the trike, stop the first FDNY or NYPD member with a walkie-talkie and beg them to find out from someone where we needed to be and the fastest way to get there. Which is exactly what we did when the door finally hissed open and let us free.

We followed the directions we were given, Lucas dragging the trike and Luke & I trucking alongside. I finally took the lead and starting hollering Pardon me! Excuse me! in my best Southern-girl drawl, hoping to sound less-rude with the Southern twang. I needed people to pay attention and make way–fast–but didn’t want to offend. Between Luke & I walking in tandem and Lucas manhandling the trike, we were definitely a wide-load attempting to move swiftly against the current of feet and bodies—all of them seeming to be headed anywhere but the direction we were aiming. My pulse was pounding in my ears and my nerves were a jangling mess; adrenaline was humming and buzzing and zipping through my bloodstream like racecars at the Indy 500.

We stopped to ask another police officer with a walkie-talkie if we were headed in the right direction, but before I got the words out of my mouth a line of handcyclists began to go by about 20 feet away, headed for the ramp to the bridge. They were going to the starting line. Without me!

PLEASE SUPPORT MY EFFORTS IN THE 2011 NEW YORK CITY MARATHON! WITH TEAM LEARY FIREFIGHTERS FOUNDATION

I couldn’t sleep the night before. Insomnia & related sleep disorders are part and parcel of MS, but I’ve also got this kid before Christmas morning anxiety thing. Forget about sleep at the times when it matters most. The night before summer camp, the first day of school or a first date, a test or presentation, an audition, opening night, the day my story or poem gets workshopped, the deadline to hand in a review or manuscript or someone else’s that I’ve copy edited or feedbacked, moving day, travel day, defend the traffic ticket day, pretty much anything significant. Good or bad important? I’m not sleeping the night before, that’s just my life.

So I lay there in the too-firm hotel bed, Gary snoring to my left and Luke snoring on the carpeted floor to my right. The room glowed green from outside light filtered through the drapes. I heard the NYC traffic on the streets below and the hotel bumps and blunted TV noises and elevator dings and people being much too loud for the middle of the night, the wee hours of the morning. I got up & quietly stretched, did a little bit of Pilates on the floor without waking Luke (some watchdog). I drank my Airborn and Vitamin C concoctions. I checked my Active.com site to see if anyone else had donated to my charity team, Leary Firefighters Foundation. I felt guilty, again, that most of my physical, mental & spiritual energy had gone to the training – and recovery from each day’s training – for the marathon. I’d meant to raise more money. A lot more money. I had envisioned myself as some sort of one-woman trike-ridin’ superhero of funds and awareness raiser for this cause, this foundation whose mission matters greatly, personally, to me.

I used up everything to make it to this point, to be physically able to do the race, capable of not just participating, but completing it. If I came this far and didn’t cross the finish line it would not be okay. Gary, my friends, even acquaintances voiced the opinion that all I needed to do was my best. Even if that meant I needed to pull out of the race at any point for any reason. I appreciated their support, the reassurances and sentiment. But, no, that was not going to be good enough.

When you resurrect a long-held dream, practically dig it up from the depths of a deserted graveyard with your own pained hands, wrenching decade-old vines the width of your ankles out of the way and braving all the things that petrify you—fire ants, centipedes, snakes, other dead and damaged-beyond-repair relics you’ve buried there—not seeing the dream all the way through feels like failure. That’s not what I’d say to you if it were your dream at stake; I’d say what people who care about me did. And I’d mean it, if it were you.

But the truth is that if I didn’t cross the finish line with those three wheels rolling and my ass in the seat, having made it to the starting line wasn’t going to be much comfort.

I also had it in my head that if I didn’t finish the race, I would be letting down not just myself but everybody who believed in me, and, significantly, those that had believed enough to donate money to Leary Firefighters Foundation through my race day efforts. I made a vow that pre-dawn morning, sitting in the emerald-tinged near-darkness. It was two-fold. First, that I would push past whatever pain or fatigue or obstacle that might try to come between the finish line and me; second, that my fundraising efforts for LFF would continue long after the NYC Marathon. There are other rides, races, events during which I could wear the Team LFF jersey, shout the praises of the nonprofit I wanted to champion in order to garner awareness and donations for this foundation that serves firefighters and their families. With that vow, that promise and a plan in place, I felt a bit better, easier.

I lay back down and listened to my favorite playlist on my iPod. I concentrated on contracting and releasing all the muscles from my toes to the top of head, even the ends of strands of hair, with slow and even breaths. I envisioned the finish line. I knew what it looked like because Luke and I had passed it on our walk the day before. I fixed the blue, orange and white banner in my mind’s eye, saw myself swooshing past in my red and gold jersey at recumbent trike height.

I must’ve slept for a little while because I awoke to Luke’s chin resting on my chest, his warm breath making shushing sounds. We went to bed early, 7ish, so that I could get much-needed rest. Luke’s clock was out of whack. It was barely 4AM, but I can never refuse him. I dressed quietly and warmly, took Luke to the closest thing resembling grass (a sandy patch about 2 feet x 3 feet with sparse weeds and cigarette butts surrounding the base of a tree in front of a condo building a block away) and then headed back to our hotel to get ready for the race. The lobby was already teeming with runners and their family members, hotel employees, travelers leaving on early flights who probably wondered about all the athletic-garbed folks up and about, somehow looking sleepy and antsy, hungry and nauseous, excited and scared all at once.

Or perhaps I was projecting my own inner state of affairs.

Training for your first marathon on a recumbent trike and want some advice? Good luck with that. The first person to be granted reasonable accommodation of a recumbent trike for a disability in the NYC Marathon—great privilege, yes, no doubt about that. But I was pretty much on my own in terms of information and assistance specific to my health condition paired with the equipment I was using. I’d done smaller distance races in the past (prior to MS) and triathlons as well, but never anything like this. I researched training routines and schedules for every kind of event you can imagine. Neither bike nor running training/nutrition fits what I do, what I was preparing for. The closest I came was information geared toward those training for the MS 150 (an eventual goal of mine). But even with that, I had to make severe alterations to accommodate my pain and fatigue levels, and to take into consideration my gut as it relates to nutrition. What you eat, when, how much, the quality of what you eat, is a major part of any training process. But for me, what I eat on any given day has consequences far beyond nutrition.

MS is a tricky, fickle, sadistic bastard. MS is also different in each individual; none of us has the same set of symptoms or variations or severities. One of the things I get to contend with is a motility disorder called gastroparesis. The vagus nerve (which controls the digestive process) is damaged, partially paralyzed. I’ll try to spare you the details (don’t want to venture any further than absolutely necessary into the land of Too Much Information), save to say that having this condition involves a great deal of abdominal bloating and cramping. Which might not sound too awful at face value. When I say cramping, what I mean is anything from the average twinges and tightness you probably experience with a bad stomachache, to the worst pain you may have experienced with the stomach flu. And then some. I’m talking pain you cannot remain standing in the presence of; pain that doubles, folds you to the extent that you have to pull over immediately if you happen to be driving; pain that sends you to your knees, to the floor if there’s no chair or bed nearby.

This pain brings along waves of heat similar to hot flashes – complete with drenching sweats, flushed face and neck. And nausea that sweeps in like a tide with no respect for the barriers of flesh & bone. Nausea that behaves more like whirlpools and riptides.

Now imagine causing an episode of this pain and attendant sweeps of heat and nausea while riding a recumbent trike. In the NYC Marathon. Where you must cross the finish line.

I have to be extremely careful about what I eat, how much, and when. Any given day with gastroparesis is a challenge, a day when you’re doing the NYC Marathon and need to be fueled with food for energy? Talk about a complicated scenario.

So I had a banana, a half of a breakfast sandwich made out of a plain white bagel, scrambled egg & veggie sausage. I took a Luna bar to nibble at on the bus ride to the start of the race. I packed energy gels. I drank Performance Gatorade after the required morning cappuccino. I prayed to the gods of all things Athlete and Wheeled and Race Day and Human Being Trying To Make A Dream Come True that my gut wouldn’t take me out of the race. I just needed my intestines to behave, for the most part, for about four hours, I figured. Had that ever happened for that length of time in real day-to-day life? No. But it was already a miracle that I was in New York City with a race number assigned to me for an event I’d given up on the day I was diagnosed with MS, 12 years ago to the very week.

I pulled on two pairs of tights. I couldn’t decide between the CW-X Ventilator Capri length or the Insulator full length. MS symptoms are exacerbated by heat, whether core body temperature or outside temperature. The warmer I get, the worse my fatigue is. And balance and other things, too, but today I wasn’t worried about balance because I’d be safe from falling in the reclined seat of the trike. So I put on both pairs of tights, because it was in the 50s with strong winds predicted. I was prepared to stop and use a porta-potty to peel off the heavier/warmer tights if I started to feel like my fatigue level was being sabotaged.

Another thing that probably falls under the category of Too Much Information, but nonetheless is relevant to MS and to this race, is an urgent bladder condition. Safe to say I’d be seeing the inside of a porta-potty at least twice, if not more, during the length of the 26.2 miles. Especially since I needed to keep hydrated to perform as well as possible and keep cool.

The top layers were easy; three Icebreaker long-sleeved shirts and a wind & water resistant jacket. It wasn’t supposed to rain, but better safe than sorry. I slipped my red Team Leary Firefighters singlet over the Icebreakers, pinned my number, H398, to the front, and Gary, Luke and I headed down to the lobby where my team, as well as the FDNY and NYPD teams, were gathering to depart together.

Waiting for the elevator on our floor, another runner came to join us. He looked at me, then at Luke in his mobility assistance dog leather harness, wearing his patches that say Certified Service Dog. Then the guy looked back to me again, down at my numbered bib. He leaned his head in Luke’s direction. “Is he running the marathon too?” This question was directed to Gary, rather than me.

That happens a lot, people asking questions about Luke to the person I happen to be with. When this scenario plays out, each time, I’m not sure the best way to respond. Sometimes I answer the question myself. Sometimes I let my companion answer. It can be an odd and off-putting thing, to be treated as invisible, but I always try to be as upbeat and friendly as possible. Luke & I are ambassadors for assistance dogs; it’s most likely that Luke’s the only service dog someone will meet. I want people to come away knowing a little bit more about what service dogs do, the difference they make. I want these people we encounter to go off and tell others about the woman and the cute service dog they came across that day. I want everyone who needs a service dog to have one, which begins with knowing that you might be helped by one.

It’s important for the public to know the worth of service dogs, to appreciate the difference they make to the people they’re partnered with for another reason too. So that when a story appears in the news about yet another person being denied entry or accommodation because of their service dog’s presence, everyone understands that a federal law is being broken, that rights guaranteed by the Americans With Disabilities Act are being denied, that someone is, in essence, discriminating against an ill and/or disabled person because they’re partnered with a service dog.

I’m very passionate about this—raising awareness in terms of access and accommodation for service dogs—because when you’re first partnered with an assistance dog you think your life will change and the whole world will open to you. That’s true in many ways. But the unfortunate reality is that many people and establishments are ignorant about service dogs and the rights and privileges granted to them by virtue of the Americans With Disabilities Act. In short, a service dog is allowed to go anywhere, everywhere, that the person he’s assisting is welcomed. And yet I’ve been denied entry to restaurants, stores, movie theaters. I’ve been refused accommodation by rental car agencies, airlines, hotels. I’ve even been given a ticket by a Hollywood, FL police officer for walking with Luke on the Broadwalk along Hollywood Beach.

Thing is, there are many days when it’s all I—or any ill and/or disabled person—can do to get out of the house. I have a limited amount of energy, some days more than others. One of the best things that MS has taught me is to choose how and with whom, on what, I spend my time and energy. I must choose very wisely. It’s a crime to have to waste precious and limited time and energy explaining to a business owner or service provider why I have the right to eat lunch with my friend in a restaurant, buy my groceries, take my god daughter to a matinee, go for a walk with a great view of the Atlantic Ocean. If you run a business that intersects with the public, you should be aware of the ADA and service dogs. Good, efficient customer service means equal service to all of your clients/customers, able-bodied and differently able-bodied alike. So whenever someone asks a question about Luke, which is essentially about service dogs, I’m in the business, the vocation, of public relations for a cause very dear to my heart.

Whether I’m waiting for a bus or a table or a cashier or an elevator – I’m often called to be an educator for the ADA and service dogs. Convenient? Nope. But a small price to pay in exchange for the gift of being partnered with a service dog and being able to talk-up awareness so that more who need one might have one, and that once that team is out in the world they might have an easier time navigating businesses and restaurants and anyplace else they choose to go.

The confusion and querying regarding the curious pair of Luke and me—a woman wearing a race number with a service dog at her side—continued as I made my way through the throngs of folks in the lobby and waited among the members of Team LFF. I’d never met any of these people before, so it’s understandable that I felt more “a part from” than a standard team’s definition, “a part of.” LFF’s marathon team organizer (and the director of Leary Firefighters Foundation) is Mardi Grant and we’d emailed and spoken on the phone a few times. I’d met her the previous day when Luke and I travelled to the foundation’s office to pick up my race jersey. When I saw her smile across the sea of unfamiliar faces I was relieved. Even without the sometimes awkward questioning of why I have a service dog and what he does for me and how, I’m a freak mix of outgoing, playful, chatterbox theatre major and shy, socially-challenged, introverted writer. Leaning toward the latter until I get to know you, or at least until I get a word or look or vibe that puts me at ease. Luke, far beyond the mobility assistance call of duty, has been a paragon of grinning golden retriever goodness who turns out to be a super secret weapon to a self-conscious geek-nerd like me. Because as untimely or weird as some of the questions I get from strangers are, there can be no doubt that Luke is a magnet. A magnet that draws anybody and almost everybody in, then transforms itself into social butterfly.

So many things about my life, about me, have changed for the better since Luke. Chief among them is that I no longer have to worry over whether to approach someone or what I should say when joining a group of people I don’t know. Am I still anxious and twitchy and stammering? Do I spill my drink and drop food on my shirt? Yes. But all I have to do is stand (or sit) there. People now come to me. And 9 times out of 10, they have huge, silly smiles on their faces; half of those people are talking in that giddy, beaming tone of voice reserved for babies and adorable, four-footed, tail-bearing creatures. Who needs Xanex to calm nerves when there’s Luke?

Well, that morning, about to make or break a dream I thought I’d never have a chance at once MS came into my life? Me. I needed Xanax.

Right there, surrounded by over a hundred expensive-running-shoe-clad men & women, it was like I was soaking up all of their pre-race jitters and doubts and worries, adding them to my own already substantial and expanding ones. So, if you’d walked up and asked me in your best Matt Lauer, Meredith Vieira, Oprah or 60 Minutes voice, “Denise Lanier, what’s on your mind this very second, as the start of the marathon approaches, not 2 hours away, and counting?” If I were being honest, I would’ve answered, “Xanax.”

And then I would’ve asked Anderson Cooper or whomever if they happened to have any. Trade you a Power Bar? GU Gel? I’ve got Chocolate Outrage & Orange Burst. Take your pick. Heck, take it all.

PLEASE SUPPORT MY EFFORTS IN THE 2011 NEW YORK CITY MARATHON WITH TEAM LEARY FIREFIGHTERS FOUNDATION

My official time for the race is 3:36:46 – not bad for my first marathon, I’m thinkin’.

I promise to get a real post with all the race day goings-on up here soon. And photos, too, of course. I’m still in the recovery phase and trying to gain back some sense of normalcy (or as close as this body gets to “normal”) post-race.   I’m in a state of exhilarated and exhausted and trying to keep the physical pain as much under control as possible.  Everything is in a hazy, glittery wash of disbelief, trying to take it all in, celebration and gratitude and relief.

I *really* need sleep.

Our departure from NYC was delayed by 4+ hours because of the winds over NY, which meant Gary, Luke & I jockeying for floor space at Laguardia with hundreds of other stranded people. Then the last flight out of Chicago – our connecting city – left minutes before we got there, necessitating a motel stay and catching the first available flight out of Midway the next morning. So, yeah, did I mention that I really need sleep? That, and I woke up the morning after race day with a wicked sore throat (which I attributed to the fact that I was smiling so big for most of the race that I was sucking in huge amounts of chilly NYC air!) , soon followed by head & chest congestion and now a cough that seems to be exacting the revenge of somebody or something done a severe injustice.

But in the meantime, I want to send big shout-outs to all the fabulous people involved with Leary Firefighters Foundation, to Lucas Carr – my buddy from Boston – who got the trike and me to the handcycle starting line in, literally, the nick of time & then got Luke back to Mardi Grant who took good care of him till the race was over.

Achilles Foundation volunteers met me at the finish line – the first was Mary Bryant who congratulated me & then put me in the hands of volunteer Andrew, who took care of my post-race needs: blankets and a down jacket when the uncontrollable chills set in, hot chocolate, fruit, PB&J, then hot chicken soup. Achilles volunteers also got the trike, Gary & I out of the end of race madness and back to the hotel where Team LFF, NYPD & FDNY were all meeting up for post-race festivities.

I met so many amazing people through this NYC Marathon experience. Mardi Grant & Sharon Badal of Leary Firefighters Foundation, I’m laying claim to you as new friends, I hope that’s all right with you!  Lucas & his sweet, beautiful girlfriend (whose name I blanked out in the post-race fugue state, I’m sorry) I’m keeping y’all too.  And Dick Traum & Russell Koplin & Helene Hines and so many others from Achilles.  Beth Sanden & John Elliot from Challenged Athletes Foundation who turned me on to the very idea of participating in a marathon with a recumbent trike; I cannot wait to hug you both in person someday very, very soon.

One of the most memorable people I haven’t even actually met in person yet. Mardi & Sharon from LFF told me about him, his foundation & book while I was picking up my race jersey the day before the marathon. Their passion for him –  his story & his mission – was powerful, ebullient. His name is Matt Long, the founder of I Will Foundation & the author of a book I haven’t been able to put down since Gary purchased it for me at the FDNY table at the hotel. Matt’s is a story of triumph against unbelievable assaults against the human body & spirit caused when a bus ran him over on his bicycle. It was a miracle that Matt survived his injuries; the doctors told his family he had a 5% chance of survival. Matt, a New York firefighter, triathlete & marathoner, who was in training for an Ironman competition, not only survived all of the dire predictions against his survival, against him ever walking again, but he went on to compete, again, in the NYC Marathon. The foundation he created is dedicated to helping others whose lives are intersected with illness or injury; something right up my alley, as they say!

Pick up his book as soon as your feet or your mouse can take you to the nearest independent bookseller. My personal favorite is Books & Books: http://www.booksandbooks.com    Here’s the direct link to Matt’s inspiring unputdownable book: http://www.booksandbooks.com/book/9781605292465

Thanks to my friend Mandi, who came out to root for me in Brooklyn – and almost got tackled by an NYPD officer when she went running down the median cheering after to me to make sure that I saw & heard her :0)

Thanks to one of my BFFs, Shelly Lynn, who took care of our other dog Elphaba & the tribe of cats so that Gary could be in NYC to share in the glory of race day with me. When I asked, at the beginning of this journey, Do you think I think I could actually do the NYC Marathon with the trike?  You said, Duh-uh, of course you can, sweetie, look at all you’ve accomplished already!  I love the way you believe in me, girlfriend. XOX

Numerous shout-outs of thanks go to all of you who donated funds to help raise awareness and further the mission of Leary Firefighters Foundation!  I’m grateful to all of you posted links to my blog on your own blogs and Facebook pages, and for all the comments of encouragement. You’ll never know how much you mean to me, what a difference you made in this long, arduous, glorious journey ~

A humongous shout-out goes to my beloved husband Gary, who didn’t faint when I said I wanted to spend X-amount of money on a recumbent trike and that I planned to ride it in the NYC Marathon in less than 4 months, who drove me & the trike to various training spots at the crack of dawn on his precious few days off, who kept telling me I could do this thing when the physical toll began to feel like an obstacle I couldn’t overcome, who helped me keep my cool with the overwhelming task of travel logistics for a disabled woman + service dog + recumbent trike in tow, who took off work to meet me in NYC for the marathon, who ran around the city catching cabs & subways trying to get as many sightings & photos of me during the race as possible, who is my biggest, surest, dearest champion: Thank you, baby, I love you – I couldn’t have done any of this without you!

Me? I’m headed for yet another long bath to soothe the muscles, the next round of pain meds & vitamins, a few more chapters of Matt’s book (my second reading in as many days) while the dogs romp in the backyard, and then sleep, Sleep, S L E E E E E P . . .

More soon ~

PLEASE SUPPORT MY EFFORTS IN THE 2011 NEW YORK CITY MARATHON! WITH TEAM LEARY FIREFIGHTERS FOUNDATION

Or, in other words, I’m gonna whup-up on Multiple Sclerosis like Tommy Gavin going Irish-drunk-crazy (is that redundant?) in an episode of Rescue Me.  Remember when he roughed up Michael J Fox’s wheelchair-bound character?  So, like that, only sort of reversed, but retaining the Gavin-esque fortitude & attitude.  Me, cripple chick, gonna put the smack-down on the MS monster.  And without the assistance of Irish whiskey!  Unfortunately

*A small disclaimer for the benefit of any of my former teachers who might be reading this – the good sisters of the Incarnate Word & Sacred Heart: sorry about saying “ass,” and, No! of course I don’t drink whiskey.  (Well, not much. But when I do, it’s always Irish. It’s the godliest liquor of them all. And just might even be sanctioned by the pope, himself. Possibly all of them)

My references to Denis Leary & Rescue Me are actually quite fitting since I’m a member of Team LFF, the Leary Firefighters Foundation, founded by Denis Leary  - AKA Tommy Gavin.  Don’t you just love it when the dots connect like that?  (OK, that might only be me & my ADD/OCD/Virgo brain. Or it could be the Irish whiskey – sorry)

You, dear reader, are so lucky!  You still have a couple days to support my history-making ride in the New York Marathon (if you haven’t already) & to help me raise funds & awareness for this phenomenal charity organization.  Please, take this opportunity to show that you don’t take our firefighters for granted.  What better way to shout-out that you acknowledge & appreciate the work they do for us all, day in and day out, keeping our communities & homes & families – our flat-screen TVs & beloved pets & collection of 1st-edition books & vintage T-shirts from the 70s & 80s (now 3 sizes too small) – safe from harm.  Firefighters are in the business – the vocation – of saving lives.  Let’s say Thank You!!!

Alternatively or in addition, your support can be a way to say, Hey, Denise, I think that you – a woman who gets around with the help of a mobility assistance service dog – are nuts, deluded, a skimpily-clad-hot-babe (sorry, Sisters!) short of a harem bonkers for thinking you could ever participate in a marathon, much less complete one, much even-lesser (sorry, Sr. Mark Edward, former English teacher), the largest, most prestigious marathon in the world. So I’d like to express my encouragement of your harebrained idea – because I love that show Jackass and the guys who do extreme sports and the idiots on that show Wipe Out and all the freaks who think they can outrun police on Cops – all of whom you remind me of. (preposition ending, sorry, again, Sister Mark Edward) I want to cheer you on by donating the cost of the margarita or cappuccino (or Irish whiskey!) I’d gladly buy you if we were hanging out.  Or, hey, let me donate a little more, because this is huge freakin’  bat-guano-crazy stuff you’re attempting!

Yeah, I kinda like the sound of that.  Normally it annoys me when people talk in the third person about themselves, but maybe they’re onto something? (OK, not so much.)  But seriously folks, if you’re able to donate – a little or a lot – firefighters everywhere, and I, would be eternally grateful ~

Here’re some ways for you to follow my progress in the marathon on race day, this Sunday, November 7th

Online Athlete Tracker:  free race-day service, visit ingnycmarathon.org on November 7th

Text Message Athlete Alert:  sign up at ingnycmarathon.org to receive on-demand updates, one-time setup fee of $2.99

Tune In:  NBC4 New York offers live coverage of the entire race; after the race catch the 2-hour highlight special on NBC Sports

Marathon App:  for iPhone, iPod Touch or iPad, download it today!

Here’s the link to buy me a margarita or cappuccino or bottle of fine Pope-approved Irish whiskey – or ten, if you’re feeling really generous (&, yeah, I think you are!):  http://www.active.com/donate/teamlff/deniselanier 

Update: last year’s donation link no longer works, but this year’s does, if you’re so inclined ;0)

PLEASE SUPPORT MY EFFORTS IN THE 2011 NEW YORK CITY MARATHON WITH TEAM LEARY FIREFIGHTERS FOUNDATION

Thank you! Cheers,

Denise

The nonprofit organization I’m riding in honor of – raising funds & awareness for – is Leary Firefighters Foundation.  Please take a moment to read about what they’ve done, and continue to do, for our firefighters and communities.

From the LFF website’s About Us/History page:

On December 3, 1999 a fire broke out in an abandoned warehouse in downtown Worcester, Massachusetts. Over 75 firefighters ran into what some have called “the perfect fire” and six of them never came out. One was Jerry Lucey, a cousin of actor Denis Leary, and another Lt. Tommy Spencer, a childhood friend and high school classmate. In response to an effort to find a positive way to deal with this overwhelming loss to his hometown, Denis established The Leary Firefighters Foundation in the spring of 2000.

A lifelong hockey fan, Denis teamed up with Boston Bruins legends and friends, Bobby Orr and Cam Neely to organize the first  Celebrity Hat Trick, “Hockey’s Greatest Skate for America’s Bravest,” a two-day event that featured two teams comprised of hockey legends and Hollywood celebrities. Thousands of New England residents turned out to enjoy the game and honor the memory of the “Worcester 6″. The Leary Firefighters Foundation directed funds to The Worcester Firefighters Local 1009 Equipment Fund to support the equipment and training needs of firefighters in Central Massachusetts. These funds have been used to design and build a new burn tower, purchase a SCBA Response Unit (a mobile maintenance unit to service and repair air tanks), and a rescue boat. In October 2007, in partnership with EMC Corporation, we unveiled The Leary Firefighters Foundation and EMC Corporation Training Center.

The success of the annual Celebrity Hat Trick allowed the LFF to expand its reach to the city of Boston. In 2004, our first gift to the Boston Fire Department was a Tactical Command Unit, presented to Boston Fire Commissioner Paul Christian on August 11, at a special ceremony outside City Hall. Built into a retro-fitted Ford Excursion SUV, this emergency management vehicle is capable of increased communications control and improved maneuverability on Boston’s narrow streets. The Foundation directed funds for the Tactical Command Unit and the acquisition of a new Fire Rescue / Diver Support Boat for the Department’s protection of Boston Harbor, which was deployed in the summer of 2006.  In 2009, a Rehabilitation Unit was also acquired for the Boston Department.

In the wake of the events of September 11, 2001, The Leary Firefighters Foundation established The Fund for New York’s Bravest to raise money for the families of the 343 firefighters who perished in the line of duty. With enormous support from friends in the entertainment community, we threw a landmark New York City benefit, The BASH for New York’s Bravest, to celebrate our local heroes. Through the success of The BASH and the overwhelming support shown by donors throughout the nation, The Fund for New York’s Bravest raised over $1.9 million before it was closed in 2003. Every dollar collected went directly into the hands of the families without any administrative costs. The BASH for New York’s Bravest continued as a celebrity-studded event through 2007 to honor New York’s firefighters while raising funds to support equipment and training needs.

In 2002, we furthered our focus to assist the FDNY with its critical needs to enhance operations and advance first-responder training. An in-depth working relationship was formed with senior commanders. Utilizing funds raised at The 2003 BASH for New York’s Bravest event, we partnered with the FDNY’s Fire Safety Education Fund to purchase a Mobile Command Center for the FDNY. This emergency management vehicle, deployed on July 19, 2004, is equipped with state-of-the-art audio and video monitoring capabilities and directly answers the call for a heightened level of communications and planning at large-scale events and emergencies. It serves as a visible point of contact for communications between the FDNY, NYPD, FBI and OEM, as well as media and local officials, and as a staging area at major events such as 2004’s Republican National Convention at Madison Square Garden. We also donated two Flashover Simulators to the FDNY Fire Academy on Randall’s Island, and in January 2005 these Flashover Simulators were incorporated into the training regiment of both probationary and veteran firefighters to help them understand progression of fire, which will increase their chance of survival in the field.

Our most recent development campaigns were focused on two major long-term projects: building a technologically advanced High-Rise Simulator Training Facility at the FDNY Fire Academy and our pledge to the New Orleans Fire Department to rebuild 11 firehouses in the aftermath of Hurricane Katrina.

On March 19, 2009, Fire Commissioner Nicholas Scoppetta joined Denis Leary, FDNY Chief of Department Salvatore Cassano and the FDNY Foundation for the dedication of the FDNY’s new High-Rise Simulator.  Equipped with mock residential, office and commercial floor layouts, the state-of-the-art simulator is designed to produce real-life fire and building conditions and help firefighters improve their skills in combating the difficulties of fighting fires in high-rise buildings and performing rescues under extreme conditions. The 4,000-square-foot structure located at the FDNY Fire Academy on Randall’s Island features a variety of real-life functions, including a fire and flashover simulator, a central smoke system, a dry standpipe system, mock elevators and stairways, video hookups on each floor for review and a simulated fire command station. The practical skills learned through exercises in the simulator will build firefighters’ knowledge and serve as an important tool in addressing the safety of both civilians and rescue personnel.

That same year, we announced the completion of the New Orleans Firehouse Restoration Project, which represented a commitment The Leary Firefighters Foundation made in October 2006 with the donation of 14 rescue boats to the New Orleans Fire Department. We witnessed then firsthand the devastation caused by Hurricane Katrina. Highly skilled union carpenters worked side-by-side with NOFD firefighters and civilians to help restore these firehouses , the project became an ongoing volunteer program with the ambitious goal of restoring a total of 11 firehouses, which was achieved in under two years and at a fraction of the cost originally estimated due to the generosity of sponsors, partners, and donors.
Capping last year was the inauguration of TEAM LFF, as The Leary Firefighters Foundation became a participating charity in the 2009 ING New York City Marathon, which is one of the most prestigious marathons in the world. This diverse fundraising team was comprised of both civilians and first-responders, including firefighters from New York, Boston and New Orleans, a U.S. soldier recently returned from Afghanistan, an EMT from Chicago, the wife of a Connecticut firefighter, police officers from Orange County California and Boston, and civilians from New York, California, New Jersey, Virginia and Geneva Switzerland. We’re pleased to report that each member of the team completed the race, and we hope to expand TEAM LFF to other marathons and athletic events in the future.

We’ve produced some dramatic results, but there’s much more to be done. With each dollar raised, we continue the process of helping to save the lives not only of firefighters, but also the people in the communities they serve.

To donate to my efforts in the NYC Marathon on November 7th, please go here:  http://www.active.com/donate/teamlff/deniselanier

Thank you!

Howdy everybody,

You might remember me from my initial post where I introduced myself as someone with a complex set of health issues looking for exactly the right recumbent trike to get me cycling again. You were welcoming & very generous with your support & advice. A few of you took the time to contact me off-forum & provide even more specific information & experience.  A couple of you took me under your wings, made sure I didn’t give up the search when the details of various trikes & configurations, choices & prices, began to feel overwhelming. I feel incredibly lucky, sincerely grateful, to not only have found what I wanted & needed—my first recumbent trike—but something I never anticipated, a few folks I now get to call friends.

A 2006 ICE QNT has changed my life.  Not since being partnered with a mobility assistance service dog has my life been so dramatically transformed.  After Luke came into my life I gained back a large measure of independence & safety & freedom.  He allowed me to be an active part of my own life, to be social again, to become of service in my community, to return to teaching, to travel for work, education & pleasure.

Starbuck, this QNT, has accomplished something equally significant.  Before the symptoms of MS intersected with my life I was always training for one triathlon or another; then I became someone who might as well have been Velcro-ed to a couch, a chair, a bed.  For a long time I had no choice about my inactivity because of the severity of my illness. When the remissions began to last longer in between relapses, I still didn’t see the point of throwing myself into any kind of modified exercise program because I knew all the progress would be lost in a matter of weeks or months when a relapse hit and I’d have to begin all over again.

I eventually made some choices that helped me to grow stronger and be more active, such as making Pilates and swimming a daily priority whenever I’m feeling well enough. Still, I never imagined I’d be able to do anything more than cheer on other athletes once the limitations of MS became evident.  Now, that’s changed. Starbuck provided much more than another way for me to be active and get exercise, she gave me something I never expected—the means by which to reclaim the label of “athlete,” to compete in mainstream athletic events, and to be a valued, contributing member of a team.

I hope to make a real difference with my efforts, to raise awareness about recumbent trikes, to encourage all those with illness, injury, disability to engage in physical activity to the highest level they are capable of—not only for the health benefits to their bodies, but for the way mind and spirit can be transformed, as well. My fondest hope is that someone seeing me pedaling across a finish line will take hold of the idea that if I can do it, she can too.

I’ve started a blog about my discovery of recumbent trikes and how that led me to one of the most unlikely adventures I could’ve ever have imagined for myself: becoming the first challenged athlete to be granted permission by the New York City Marathon to use a recumbent trike as reasonable accommodation for a disability. I hope you’ll pay the blog a visit, maybe even subscribe and pass the link along to your cycle-loving friends. I hope you might tune in to watch your BROL colleague on November 7^th; I hope I do y’all proud. I hope you’ll tell everybody you know about the team who warmly and eagerly welcomed me in spite of the fact that I don’t look like the average marathoner, Team LFF—Leary Firefighters Foundation is a phenomenal charity organization doing amazing work for our nation’s firefighters & their families.

Most of all I hope I have conveyed my gratitude for the part you played in aiding my trike-quest, for all of your advice, and for encouraging my dream. I hope to be among you and sharing stories and listening to yours for a long time.

Happy trails,

Denise Lanier

www.wonkybent.wordpress.com

www.deniselanier.wordpress.com

I still need to figure out how to insert the accompanying photos & links properly. If only this blog technology was as easy as riding a trike . . .

~ Years ago I accepted I couldn’t ride a bike anymore due to MS-related balance issues. Yesterday I decided there are times when acceptance has to be revisited, challenged. I’m on a mission to find a way to modify a bike so I might ride again. So what if the bike looks silly, if I fall sometimes, if I even have to make the bike myself? So what if it doesn’t work out? Take that, you big not-so-scary MS Monster.

~ I’m researching recumbent trikes—dang, they’re expensive!

~ All research and advice for the best fit—given my unique & complex set of challenges/health issues—point to one maker of recumbent trikes:
http://www.ice.co.uk

~ I understand the reason the recumbent Lifecycle at the gym instructs me to Pedal Faster, and I have no objection to complying. The Pedal Slower command, on the other hand, is bewildering in its purpose—though it does makeme feel a bit like Lance Armstrong.

~ This guy inspires me!

http://www.theataxian.com/

‎~ “Every day brings a new opportunity to respond creatively to our injuries.” Christopher Reeve
Dear Christopher, I’m trying to live up to this ideal. You are one of my heroes—always.

~ I’m heading to Austin with Gary, Ana & Luke to test drive some recumbent trikes at Easy Street Recumbents & then feast on some BBQ. I’m so excited to take a step closer to finding and acquiring my own set of wheels.
~ Mike at Easy Street Recumbents is the king of customer service! I would definitely buy from him if we could afford to purchase new.

http://www.easystreetrecumbents.com/

~ Jenny, you make my heart sing. Your story makes me more motivated than ever. Thank you.

http://www.spokesman.com/stories/2010/jun/20/jennys-centennial-journey/

~ If I get my trike in time for the NY Marathon, I hope to be a part of Team LFF—to ride in honor of them & all the good that they do for our nation’s firefighters and their families, for our communities. It would be amazing to be able to raise funds & awareness for this worthy charity. I hope I get in, and I hope they’ll have me on their team!

http://www.learyfirefighters.org/

~ Here’s why my friend Anne & her sister bike the MS 150 every year. From me (& many others), a heartfelt Thank You!

http://anneboleson.wordpress.com/2010/08/01/on-why-we-ride-the-ms-150/

~ If all goes according to plan I will begin training for next year’s MS 150 on my new recumbent trike this time next week.

~ My soon-to-be trike’s younger & faster sibling, the Vortex, from Inspired Cycle Engineering. I’m getting a 2006 ICE QNT.
(photo)

~ I’m excited & impatient for something to arrive in the mail, which makes me feel like I’m 9 yrs old again & waiting for out-of-town birthday gifts. This just happens to be one that I’m hoping will hold enough magic to wheel me into a bit of a miracle.

~ Looking out the front window every 20 minutes for the UPS truck, ’cause it’s trike delivery day!

~ I’m now the proud owner of an ICE QNT recumbent trike. Wow, let the Return-to-Cycling journey begin!
(photo)

~ My new-to-me 2006 ICE QNT recumbent trike! 

Xena (my cat) is testing that the suspension and comfort of the mesh seat are adequate.
(photo)

~ Training for the MS 150 (and hopefully the New York City Marathon) has officially begun. The recumbent trike is a marvelous invention.

~ OMG, my advocacy battle conquered: I’m an official entrant in the NYC Marathon! I’m the first athlete to be granted use of a recumbent trike as reasonable accommodation for a disability. I can’t believe this is happening.

~ I got detoured from my training ride yesterday morning by construction on the bike path, which added 7 miles to my planned 10 miles. Today, I rest & recover; tomorrow, back after it!

~ Off to an evening training ride in Hermann Park; oh please, let there be a breeze.

~ I haven’t had such a radical transformation in my way of life-as-affected-by-MS since being partnered with a mobility assistance service dog. I can officially declare that I love this recumbent trike more than chocolate & cheese & cheesecake. Heck, I even love it more than coffee!

~ Whodathunk wool would keep me cooler & drier than fancy-schmancy tech fabrics while training in the TX heat? The wicking & breathing properties of pure Merino wool are freakin’ amazing. Thank you New Zealand sheep & shepherds!

~ Hey everybody, here’s the phenomenal superfine pure Merino wool clothing I mentioned yesterday. It’s organic & from a sustainable source, whereas other performance fabrics are made from petroleum products (yuck). You can determine via the “Baa Code” the exact sheep farm the wool for your garment was sourced from!

Icebreaker
http://www.icebreaker.com

~ Triking through historic Glenwood Cemetery in Houston. You can’t tell in this photo but there are actual hills. Probably the only hills left in Houston.
(photo)

~ My new ICEBREAKER top just arrived from the cute FEDEX guy. I just may have discovered the performance wear equivalent to steroid doping. Don’t tell!
(photo)

~ Spent my summer training for a marathon, which looks a bit different when I do it. In my twenties, before multiple sclerosis came into my life, I had a dream of participating in the NYC Marathon one day. I had to let that dream go over a decade ago; it didn’t fit w/someone who ambulates w/the help of a mobility assistance service dog. Then I discovered recumbent trikes & the world of competing as an athlete opened back up to me. I’m the first person granted use of a recumbent trike as reasonable accommodation for a disability. Not only do I have the opportunity of reclaiming the label of athlete, I have the privilege of raising awareness for a nonprofit organization I’m very passionate about, The Leary Firefighters Foundation. I get to make a dream—that I thought I’d buried long ago—come true, and maybe be a bit of a fundraising hero for some folks who truly are heroes, all in the same day! Is that Good or what? I’m one lucky woman, that’s for darn sure. I can’t remember a better summer, one filled with so much promise & anticipation.

~ Verve Vim Vigor Zap Zeal Zest Zing Zip! Sometimes I allow exuberance to sway me away from the realities of this body. Overdid it w/that last training ride, but tomorrow I’m all over it. Moxie Fire Gusto Oomph & Chutzpah, be mine!

~ ‎343 firefighters perished on September 11, 2001. The Leary Firefighters Foundation raised 1.9 million to help support the families left behind. In the wake of Katrina LFF donated 14 boats to the rescue efforts & later helped to restore 11 firehouses so that people could move back into their communities. I’m proud to be pedaling with Team LFF in the NYC Marathon. Would you please consider supporting my efforts? Even reposting this link & talking up LFF to your friends can make a difference! I’m grateful for *anything* that helps raise awareness & funds for this organization.

~ Gary fancies himself as a semi-pro weather man, which is why I got caught in a lightning storm & had to ride through mud swamps; but also how I ended up watching the colony of Mexican free-tailed bats exit the bridge exactly at sundown. So, he’s forgiven.
(photo)

~ You don’t realize how many stray dogs hang out in cemeteries until you start frequenting them yourself. I now bring snacks for them. A bargain: I feed you, you don’t chase me while I ride around. So far, so good.
(photo)

~ Seriously, folks, I’m the 3-wheeled Pied Piper of stray dogs! Though I don’t actually *try* to lure them & I only feed them on occasion. (No dognapping – a’ la’ the actual Pied Piper, I promise.)
(photo)

~ I received a call from Dick Traum congratulating me on making history becoming the first recumbent tricyclist entry in the largest, most prestigious traditionally runner-only event in the world. A call from Brad Pitt or Madonna could not have made me happier! Dick is a legend & one of my heroes. Check him out:

setting the pace: achilles international / nycgo.com
http://www.nycgo.com
Visit NYCgo for official information on things to do in New York City, including adaptive sports and running with Achilles International in the ING New York City Marathon.

~ Looked up mid-lap from the pool & noticed a pack of young firemen standing nearby. I swam more swiftly than I ever have, with flawless, gorgeous form. They didn’t seem to care; next time I’m going to cough a little bit of water, strive for pallor–see if that gets their attention

~ These things are like Spanx to the Power of Ten! Rheumatologist suggested CW-X compression tights to support my knees, hips & core while riding; says they will also aid in muscle recovery in the first couple hours after training. It takes me that long just to get o-u-t of them. But totally worth it.
(photo + link)

~ This might seem off-topic, but it’s not. My husband is the greatest champion, partner and friend than anyone could ever dream of. He’s the reason I believe I can actually achieve my wild dreams, like becoming an athlete again, like crossing the finish line of the NYC Marathon. This dance, to me, embodies Gary’s devotion in our journey w/MS ~

So you think you can dance – Fix you – Robert & Allison
vimeo.com
Beautiful contemporary dance choreographed by Travis Wall; danced by Robert Roldon & Allison Holker. No copyright.

~ After a night of gusty breezes the too-green lawns & twisting lanes of the graveyard are left decorated with the heads of lilies, carnations & roses. A Technicolor obstacle course for the wheels of my trike.

~ Be still my grateful heart: a morning in the 60s. God, I love fall!

~ Note to self: when you pull a Gary & fail to ask for directions—going 6 miles out of your way—that’s 12 extra *freakin* miles you’ve pedaled.

~ I heard the unmistakable & grievous sound of my trike’s undercarriage scraping bottom on cement this morning. Crappity crap crap ;(
(photo)

~ This marathon training thing is kinda kicking my ass; I’m constantly sore & exhausted; I keep wondering if I’ve gotten in over my head; donations are slim & I’m kinda feeling like a failure for my LFF team before the race has even begun. I’m humbly & somewhat-embarrassingly (yeah, I know that’s not a word) asking for a shout out of support from y’all—my friends—to keep me keeping-on over here. Sometimes you just need a little encouragement in the midst of the long, hard journey, ya know? I’d really appreciate it. Oh, & here’s the beginnings of the new blog, if y’all’re interested. Thanks for allowing me this much-needed moment of whining this morning

~ The other falls were fairly harmless, but this one resulted in a busted lip, scraped chin & chipped tooth. The downside to the world of recumbent triking is that I cannot take Luke along & thus have only my own wonky legs to depend upon. Anybody know how to craft a golden-retriever-sized sidecar?

~ Had a great training ride in Houston’s historic 6th ward yesterday; though I almost ran into a squirrel while admiring the gorgeous old homes. Sorry, dude.

~ I have determined that the term “squirrelly” originated from the situation when a squirrel runs into your impending wheeled pathway & then instead of continuing forward out of harm’s way, it pauses & decides to turn & run back across your wheels’ now-even-closer-route, thereby endangering itself AGAIN. They *all* do this. To me, anyway.

~ There is nothing in the greater Houston landscape that can prepare me for the first mile of the NYC Marathon, which is entirely Uphill. I have nightmares of not being able to pedal forward anymore—close to the top—then rolling backward, picking up speed, colliding w/an unsuspecting pack of runners.

~ I would rather end up rolling backward down a hill & making a 3-wheeled fool of myself than not attempting to conquer the hill at all to save face. That said, you might not want to be running directly behind me. Seriously. )

http://www.active.com/donate/teamlff/deniselanier

I’d love it if you might help me raise funds and/or awareness for this phenomenal nonprofit that supports firefighters, their families, and the communities they serve – which means, in other words – *all* of us!

The Leary Firefighters Foundation seems to fly under the radar of media coverage, going about the business of making a difference in much the same way that firefighters themselves often do. Let’s face it, we tend to take firefighters and their constant vigilance for granted, don’t we? Until we need them, that is.

LFF makes sure that firefighters have what they need – equipment, training, etc. – to do their job, to save our homes & businesses, schools & hospitals, our lives. LFF helps out when firefighters are injured–or worse, lose their lives in the line of duty. LFF is the kind of organization and the kind of people you want to have your back, to be there for you in the wake of tragedy. If you couldn’t provide for your family, trust me, the folks at LFF are the cavalry you’d hope to step in. They have proven time and time again that they know how to help in times of need.

Please, help support them in any way you’re able. Of course money is good! Spreading the word is a wonderful gift, as well. Pass along the link to this blog, talk to friends and family about Leary Firefighters Foundation and the amazing work they’ve done and continue to do every day. Don’t we all need some good news to spread? I know I love hearing about people doing good out in the world, people making a difference. So, in sending the name Leary Firefighters Foundation out through the grapevine, not only are you spreading the good news about these folks, you’re actually *doing* good, yourself! For which LFF & I are very grateful.

If you happen to have a few bucks to give to this cause, please, please do. With cash in hand, LFF can do incredible things for those who risk their lives day in and day out for all of us. And you’ll be encouraging me in my journey to reclaim the title of “athlete” and to make a difference with my two legs pedaling through the miles of New York City in the marathon on November 7th. I’d love to have your support in my goal of inspiring others to reach out and claim (or reclaim) an active, meaningful, adventure-filled life.

Thank you ~

http://www.active.com/donate/teamlff/deniselanier

Howdy ICE folks,

You might remember me from previous correspondence asking (many) questions in order to purchase my first trike. I have a complicated set of needs because of health issues & your information/advice was incredibly helpful, your extreme patience much appreciated. So much so that I wished more than anything to buy a new trike from you. Not just because I was convinced of the superior quality & perfect match for my needs, but because of your incredible kindness & service. In the end though I was so excited & eager to get riding that I purchased a used QNT so that I could have a trike sooner rather than later.

I’m writing to let you know that I’m going to be riding my 2006 QNT in the ING New York City Marathon on November 7th of this year. I’m the first challenged athlete granted permission to utilize a recumbent trike as ”reasonable accommodation” for a disability (MS) in the history of the marathon. I suppose you may already have disabled athletes using your trikes in marathons there in the UK, but over here – and with the large, prestigious marathons most especially – race directors still aren’t too keen on anybody but runners (and elite ones at that) in their races. And while there are events specific to disabled athletes, I believe very much in, and desire, inclusion. Which is why I consider
the opportunity to be a part of the NYC Marathon an incredible privilege.

I will be a member of Team LFF, the Leary Firefighters Foundation – an organization I’m very passionate about:  http://www.learyfirefighters.org/about-us/foundation-history/

They have done tremendous work, such as rebuilding 11 firehouses in New Orleans in the aftermath of the devastation of Hurricane Katrina, providing much-needed equipment & training to firehouses all over the US, responding to the events of September 11, raising 1.9 million in funds that went directly to the families of 343 firefighters who perished in the line of duty. I couldn’t be more thrilled to be a part of Team LFF and to have a chance at my lifelong dream of crossing the finish line of the NYC Marathon. A dream I thought I’d given up forever when I was diagnosed w/multiple sclerosis over a decade ago. I hope you know how much the fine trikes you build mean to people like me who no longer have the option of riding a bike. In fact I cannot even ambulate without the help of my (adorable & devoted) mobility assistance service dog Luke. When I’m out riding I feel the glorious independence & freedom and adventure of cycling that I haven’t been able to enjoy in over 12 years. This trike has changed my life dramatically. I can hardly believe how I feel: strong & capable & decidedly *not* disabled. When I’m flying down the bike path with the breeze whooshing past, the wheels powered by my own ability & endurance, I feel healthy & unbroken, triumphant. A drastic difference from how I usually feel as part & parcel of going about life w/ MS.

I’m sure every owner of a recumbent trike takes great pleasure in it, but the owners of ICE trikes have to be the happiest of the lot, no doubt. I thank you for creating such stellar pieces of wheeled artwork. These masterpieces of 3 wheels & chromoly, bits of anodized aluminum & chain – that you’ve spent 25 years engineering into the ultimate design – have given me back so much, not the least of which is the title of “athlete” – something I never imagined I’d be able to
reclaim. I’ll ride Starbuck with the utmost pride on race day. I’m sure there will be a lot of attention paid to her & you can rest assured that I will be saying ICE ICE ICE ICE as loudly & clearly as possible. I wish you could be there to see her cross the finish line of one of the most prestigious marathons in the world!

With humble gratitude & great reverence for your craft,

Denise Lanier

Houston, TX

This blog is about how a recumbent trike led me–a woman who ambulates with the help of a mobility assistance service dog–to become an entrant in the 2010 New York City Marathon as a member of Team Leary Firefighters Foundation. This blog is about living with multiple sclerosis, living life to the fullest in spite of multiple sclerosis. This blog is about how an awful, painful & terrifying disease has been an agent of change for so many wonderful things and people and opportunities and adventures in my life.

Which is all to say that this blog is about life, in all of its unpredictable, wild and wonky glory.

Thanks for coming by  &  please consider supporting my efforts for Team LFF in the NYC Marathon on November 7th: http://www.active.com/donate/teamlff/deniselanier