*cue music*

It’s my blog-verse and I’ll cross-post if I want to, cross-post if I want to!

Are you a Poet?  Do you want to be?  I’m inviting all of you to collaborate with me!  Send me your words–-and accompanying images, if you’d like-–to be included in TEDxYouth@TheWoodlands on January 7th.

It’s as easy as fill-in-the-blank.  Just complete these two phrases: “I imagine a world where __________.  This is how I would create it: _________.”

For example, you might say, I imagine a world where everyone who might be helped by an assistance animal would have one. This is how I would create it: devise a system which networks dog rescues, foster families, trainers and veterinarians with healthcare providers and the people in need, so that rescued dogs well-suited for certain services could receive housing and training by volunteers, and then be matched–-through a nation-wide system similar to the bone marrow donor database–-with human companions they would serve.

Or you could just submit the first half of the fill-in-the-blank if you’re feeling short on time or inspiration.  “I imagine a world where __________.”  No child is hungry.  Every student has the books and supplies she needs.  No senior citizen goes without medication in order to make ends meet.  Coffee and chocolate are free.  Dogs count as passengers in the carpool lane.

Come on, let your imagination fly high and wild–create a “perfect” aspect of the world as only you envision it!  Then tell me all about it.  Email your responses to me, Denise Lanier, via moonspeak(at)comcast(DOT)net by January 3rd.  Become a part of something that we create together for TEDxYouth@TheWoodlands and for this New Year upon us in 2012.  Send your wishes out into the universe, gift-wrapped with our collective good will, ringing with our unique voices.  You never know what will happen.  At the very least, you’ll have made a shiny new piece of dream-woven art.

If you’re a new reader here and wondering what in the blue blazes a klepto-collaborative poem is, check out this one from TEDxWomen.   A klepto-collaborative poem, in essence, is a found poem.  The ones I made for TEDxTheWoodlands and TEDxWomen were crafted from the words and phrases of many speakers, reshuffled and reshaped into a new mosaic of collected voices.

You can also use this technique with a single piece of prose or poetry, or several of one author’s/poet’s works.  Which is what I did for “Listen, There Is No Mercy,” created from the poems of Sylvia Plath.   An excerpt of this poem can be found on Wicked Good Life, the blog of one of my favorite authors and a huge poetry lover, Ann Leary.  (By the way, if you’re not reading her blog–and her books!–you’re really missing out on some fine, witty writing & stellar, hilarious stories.)

I hope to begin receiving your words and images any moment now.   I’m eager to see and hear your offerings.   I’m excited to craft our word-and-vision mosaic feast of a poem for TEDxYouth@TheWoodlands.   The event is already sold out but you can still get your name on the waiting list:  if I were you and I didn’t have one of those golden tickets, that’s exactly what I’d do.   Seriously, check out this list of speakers and performers.

Also, Luke will be there, and who wants to miss an opportunity to visit with the most famous (if not the only) Poetry Dog on the planet?  In addition to his co-facilitation of many a poetry workshop, his roles as the subject of visual art and characters in narrative art, Luke was mentioned in more than one of the TED Talks at TEDxTheWoodlands this past September.   I’m telling you, he gets around, and not just because he has four really fleet feet.  He’s an uber-dog of inspiration, affection-giving, tennis-ball-fetching, good cheer-bringing; a prime representative of assistance animals performing invaluable services the world over.   Luke’s the ”it” dog of poetry *and* of TED.  Much like Zooey Deschanel’s the “it” girl of 2011′s new offerings of situation comedy.

Now, go, ponder the world as you desire it to be!  I need you as my co-conspirators and poetry partners in “crime.”  Email me with your wondrous offerings by January 3rd.

*** Oh, and please make sure you have the proper rights to use any images you send.

I really do seem to be the pied piper to stray creatures of the four-footed fur-bearing variety.  Often I’m away from home and pretty far into my rides when I come across a seemingly-lost dog so there’s nothing to be done about it right then and there.  I have been known to go back to the dog-sighting places in my car to see if I can find a dog to bring it to the shelter, but most times the dog’s already gone or is too slippery and/or wary to be caught. This one, however, I succeeded in getting ahold of.  It was running around just a block over from my house so I had the benefit of being able to go back with a leash a couple days in a row.

He was not wary at all but he was wiggly-slippery; it also appeared as though he’d never been walked on a leash with any regularity, which made our travel a bit challenging at first.  Upon closer inspection I noticed that his nails were so long they’d grown at odd angles, causing him serious discomfort and a resulting limp that alternated between his feet as he walked.  Once I had him home, fed and watered, I saw callouses on his front legs.  Sure indicators of having been left too long and too often in a cramped space, like a crate too small for him to stand up in.  That severity of callous on a dog so young is usually the result of being in a pound or shelter where the dogs lie on concrete slabs day-in and day-out. Also of note, he still had his dew claws.  Any vet would’ve removed those at his first or second well-pup visit when he was getting the series of puppy shots, and if not then, for sure when he was neutered.  But this dog isn’t neutered, which also led to doubts about his owners.  My husband took some photos to make Found Dog flyers, but we began to wonder more and more if we wanted to advertise the finding of this dog.  I wasn’t sure his owners deserved him.

Then, two days after finding the dog, I was walking him in my neighborhood when a car pulled over to the side of the road and when I caught up a man rolled down the window and asked me, “Did you find that dog?”  I actually considered saying no, that he was my dog–but, seriously, this dog is unmistakable–so instead I answered, Yes, is he yours?  To which they responded, “Yeah, but don’t worry, we don’t want him.  We was gonna take him to the pound anyway.”  I could not have been more shocked if I’d tried.  (“flabbergasted” is the word my mother would use, which really fits better in this situation)

Why, I asked them, were they willing to give up this dog? He’s as adorable as he is beautiful.  The woman in the passenger seat leaned over and said, “When we got him he was a real tiny thing but then he growed up too big.”  At this point in our conversation, I noticed that the dog wasn’t even responding to their voices.  He didn’t seem interested in them, his official owners, in the least.  He stood by my side, leaning his weight into my leg, chewing on blades of grass every now and then.  The man went on to tell me that “Poochie” gets along great with their two boys, a toddler and a six year-old, and that he’s a “really good guard dog.”  I asked about his health and was told he was “perfect, no problems at all.”  Before they took off I got contact information for them and the name of the vet.  I asked if the couple would like me to bring the dog around so their kids could say goodbye to him.  The woman said, “We done told ‘em he was lost and prolly got hit by a car by now.”

I cannot begin to tell you how much I wish we could keep this dog.  We still have not found a home for the pit bull we rescued two summers ago and she’s a handful for this MS’d body of mine to handle.  She was severely abused and neglected and she’s only just now arriving at a place approaching wellness of mind, body and spirit.  Having three dogs is simply not an option for us.  I hate the fact of that, but it is what it is.

We’re willing to foster him until someone falls as much in love with him as we have; we’re willing to deliver him personally to the right home (in the USA), that’s how how besotted we are.  If you know my service dog Luke, this pup is more like Luke than any dog I’ve ever met, which is saying quite a lot.  Really, if you know Luke, that’s saying Everything You Need To Know.

This gorgeous, sweet-natured puppy desperately needs a forever home with someone who will love him as much as he loves squeaky balls, plush toys and lying on the couch hogging the armrest while watching TV.  He also likes to position himself half on and half off the chair by the windows–sometimes with his front paws up on the seat, other times with his butt on the chair and his front paws on the floor–pretending the world going by out there is one long, really captivating film. It sounds cliche, I know, to tell you that he’s fond of long, meandering walks but it happens to be true.  He enjoys the sunny spot on the floor in front of the french doors with a nice pressed rawhide bone in the afternoons.

But he’s happy to spend time lolling about chewing and wrestling with a bone no matter the time of day or weather.

He doesn’t like being tied out in the backyard very much (unfortunately we don’t have a fence yet) but he manages to smile through it.

He really doesn’t like being made to impersonate one of Santa’s reindeer, but he didn’t eat me or the antlers in retribution for the shame cast upon him.  (though I do believe he was growl-cursing under his breath at me)

He has the most fascinating blue eyes; photos don’t really do them justice.  Much like a Harvest Moon, the Atlantic Ocean and the Grand Canyon, you have to appreciate the live, in-person verson to get the full experience.

My guess is that he’s about 60lbs at 7 – 9 months, though he’s a mite lanky and could stand a few more pounds on his bones.

He probably has some Rhodesian Ridgeback in him.  Or maybe Great Dane.  Both?  He likes children, dogs and cats, a polyamorous sort, to be sure.  I think he’d make a great hunting or Search & Rescue dog because he tracks the pathways of every squirrel, cat, etc. that crosses our back and front yards with a passion and accuracy I’ve not witnessed since my old neighbor’s bloodhound found the familiy’s escaped parakeet in the magnolia tree three streets over.

He has the intelligence and temperament (calm, focused, eager to please) to make a great service dog; his height, in particular would lend perfectly for mobility assistance. (Luke is willing to give him a few pointers and a reference letter.)

Did I mention that he’s big?

He has a big mouth, a big voice and a big tongue, the latter of which he uses to lick our cats from the crowns of their heads to their tailbones.  A couple of the cats are willing participants in this activity, one of them not-so-much. (I keep trying to get this on video but of course they disband their inter-species trysts the minute I get the iPhone switched over to record, just to spite me & the gods of YouTube)  ((which really rankles me because I just know I could get that video played on Ellen!))

This dog is smart.  He learned to sit by both voice command and hand signal on the second day.  He now comes and sits as soon as I take the leash off the hook by the door or open the cabinet where the treats are kept.  He is very affectionate and has exquisite taste. (that’s my arm in his teeth, thanks very much)

If you’re a regular reader here you’ll remember how I discovered an entire feral cat colony this past summer.  First I became its provider of food and fresh water, and then my husband and I began trapping, spaying and neutering.  We released back the cats that appeared too wild to even think about domesticating for future adoption.  We kept six of the cats which we determined could probably be tamed.  One of those six escaped the crate and was only retrapped a couple weeks ago, so she’s behind the others in the domestication process.  Of the other five, all but one of them is pick-up-able and will roll over to give you his or her bellies to rub when being petted.  So please be in touch, too, if your home, couch and windows need some feline-ness.  (photos in the link above)

What you need to understand is, the websites I read, the vets and cat rescue folks I spoke with, my neighbors–all advised that feral cats could not be tamed: kittens, yes–adults, no.  Don’t waste your time or energy, was the overall message from the so-called experts.  I’m so glad that I’m the stubborn sort when it comes to the saving of creatures.  I’m pretty darn sure these cats are glad of that aspect of my personality, as well. Not to mention the horse-dog of a house guest who thanks and over-thanks us with licks and dancing-on-his-hind-legs greetings each and every morning.  Add to that pool of gratefulness my own, for being blessed with a husband who has a heart as big as the state of Texas, my dear, devoted co-wrangler of feral cats and stray dogs. (though he might just be considering sabotage on my trike if I keep using it as a stray-creature-discovery tool!)

We started out calling this dog Elvis because he cries when left alone in the crate.  He settles much quicker than he did at first, now that he knows we’ll always come back–that he’s not being abandoned, yet again.  The first couple nights though his cries were so mournful it just about broke me.  ”You ain’t nothin’ but a hound dog, cryin’ all the time” kept playing in my head, bereft underscore to his bluesy, crooning whines.  Elvis really is a good name for him, but we soon realized that it sounded too much like Elphie, our other rescue dog’s name (short for Elphaba)–and we kept getting wrong numbers, so now we call him Presley.  Alas, Presley and Elphie still sound enough alike in their ending vowel sounds that the dogs still get a bit confused.  He’ll have a new name soon, anyway, most likely, given to him by the person, or people, who will be his family, his once-and-for-all home.  Maybe that’s you?

If not, it could be someone you know.  Please spread the word; pass on this post.  Feel free to contact me with any questions: moonspeak(at)comcast(DOT)net

I have no doubt that this blue-eyed handsome stranger–regardless of his name–will be a once in a lifetime dog for someone.  The kind of dog to which all others who come after will be compared.  And, really, can you imagine your life without this brand of goofballery in it?

I think not :0)

“You Strike A Woman, You Strike A Rock”

          a Klepto-Collaborative Poem from TEDxWomen, December 1st, 2011

1.

Forget

Our collective history of

Not wanting to take up too much space

The pressure to be conventionally feminine

Accepting the presumptions of our fathers

Being popular         Starving to fit in

Tweezing      Bleaching     Botox

Painful waxing

The new social norm        Of plastic surgery

Dismiss

Trips

Across the globe     Of our bodies

In search of

A cure

Distractions

Measuring up to     Magazine covers

Myths                        Perpetrated by

Hollywood                “Real Housewives”

The industry of pornography

Ignore

The media    Consuming bad behavior

Complicit

A sense of entitlement

Handicapped with the notion that value lies in beauty

Remember

That lense                The lessons

Alarming loss

The sport      Of comparing          Devaluing

Hyper-sexualizing             Stealing innocence

Yes      The world does fall apart

Yes      History tried to crush

She caused a sensation     Sold violence and sex

What I’m here to say is

Pirates           Soldiers         History

You’re done

You are not the boss of me

Bullies

Regardless of age or gender

Culture of conformity

We’ve had enough

My sisters and I

Will bypass you      Move on

Pursue other friend opportunities

Invest in our own unique identity

The good girl

The odd girl out

Shy, sensitive and sweet creatures

Brave                        Hope

Wings folded                        Or stretched to the limits

A strange mixture of humility and daring

Declarative

They are all us

An all-female bomb squad

A new legacy

Thinking differently

Driven by a cause, a purpose, a belief

Each woman                       Beautifully designed

From the inside out

2.

Mothers and daughters and sisters

Walked into the room

Of not-good-enough

Like the sun

Broke through the glass ceiling

With their high-heels

With blood, sweat and tears

With voices raised

With an instinct to save

Crossing the chasm

Of what came before

With the radical idea

Of equality

3.

None of what I’m telling you is my opinion

After decades of

Swallowing              Abuse

You go home with something broken

Retreat into silence

Coiled ropes at the edges of nothing

A vast horizon

Of isolation

Subliminal              Epidemic

Hungry        Haiku

Of invisible question marks

Rooted

You wake up

Infected

Pregnant with        Dark matter

Folding on itself

Giving birth to

Dark energy

Nightmares             And self doubt

A kind of kryptonite

How many Generations of girls are

Tragically scarred                        Misdiagnosed

Suffering consequences of resistance

A sense of invisibility Like an oil spill

Voices constantly saying

Be nice          Be pretty

Be seen but not heard

Be sexy and skinny

But not too smart

Not too fast

Which transitions into

Unexploded ordinance

We all carry with us

Pass on to our daughters and granddaughters

Party favors

Parting gifts

Disguised

As a fishing vessel

A bottle of poison

A refugee camp

A couple of little spikes

An assembly line

The first apple I ever tasted

4.

Women of hope       Begin to rule

Imminently qualified

Burning up with a fever

Awaken        Chosen

Wings extended

Women of change

It’s time to    Pilot the plane

Write your own stories

Believe in our glorious     Female pattern

A rich iron mine

Gravitational attracting            Bending the curve

Achieve this tipping point

Personal relationship with the heart

A huge pot of soup which we all share

Nourished    With belief

You’re not helpless

You’re someone

You’re just fine

Darling          Free yourself

March with generations of women

On the mall in Washington

Become advocates of

The magic of existence that is us

Showing up united

Our militia   Of change

Dance with joy, dance with love

On the frontiers of possibility

With occasional graffiti

That gift from the boat

A dream speech

A higher authority

Of compassion

Of community

Girls and women

Great oracle Golden circle

The scale of the night sky

Bow dipping into each wave      Of speaking out

Defying fiction

Telling one another the story

Mother of invention

Never let me forget

Plant me       Marvel

I’m here to stay

Here’s a human heart

Powerful       Origami

Beyond comprehension

Connecting all of us

Take ahold of that small hand

Never let go

Believe, believe, believe

5.

Lo and behold, look what’s happening

With girls all over the world

Lo and behold

All over the world

Girls

Happening

Behold,          Girls

The world

6.

Come, say goodbye              To our shared history

Of soldiers at the break of dawn

Pirates at midnight                      And mockingbirds

Shed the voices       Of the past

Of patriarchy                     Misogyny

The roles       Of restriction

Subjugation

We can fix our own

Broken          Wings

Don’t leave me up here all by myself

Make that journey                        Walk the line

We can’t afford to wait

I welcome you         To the rebirth

Look to the woman on your left

Look to the woman on your right

Take her hand

Side by side

We can          Wish

Leap forward                       Take flight

Create a brand new story

Talking about a child

A little girl climbing a tree

A poet, a playwright, a teacher, a politician, a neurobiologist

Capacity to imagine                     Freedom

Interwoven              In the bloodstream

Listen                        This will protect the heart

We are not hopeless

This    Is the revolution

We are pioneering our     Evolution

Exploring     The fertile void

Nurturing   The upward ascension of the human spirit

Girls are the solution

Cure for        The old paradigm

Their authenticity                        Their passion

Is the beginning of the beginning

The reverse of         The so-called          Golden rule

Let’s see them safely through

Build an alliance   With the young leaders of today

Spread the word     We are one village

One tribe      One blood

Remember   The 17 year-old activist in South Africa

Fighting for equality

Fighting

Not for a life of ease                       Or for technology

But for the privilege of education

Her name is Busisiwe

Which, translated, means Bliss

To hear more about the TEDxWomen conference & find out exactly what the heck a “klepto-collaborative” poem is, sidle over to my other blog WordPlay.

I’ll be doing another live-action klepto-collaborative poetry creation & performance (like  I did for TEDxTheWoodlands) at TEDxYouth@TheWoodlands on January 7th. The event is all sold out but you can place your name on the waiting list; I hope to see you there!

I know, I know, this post doesn’t contain anything about recumbent trikes or MS or even service dogs, specifically – and yet, everything is connected. I am a writer, a poet, who happens to have MS. The thing I learned from Michael J. Fox is how to see things differently, to re-frame them, as opportunity rather than tragedy. So when I was diagnosed with MS and it became clear that my life would no longer revolve around acting and the theatre, I had to find another way to tell stories. A way that didn’t involve me performing on stages. Which is when I reclaimed my first love, creative writing.

Or, I guess to be more accurate, my first love – as is the way with all writers – was reading. Every teller of tales started out as the listener, the consumer. More than anything else in life I am a lover of story; it’s who I am. I love reading stories and watching stories through film and hearing other people’s stories any way they’re told, through every medium a story can be communicated.

I am a storyteller. Being a storyteller is one of the main ways I cope with a life intersected by MS. As much as having a devoted service dog and riding a recumbent trike transform my day-in & day-out with this illness for the better & brighter, so does my love of story. In fact, if worse came to worse and I had no trike or service dog, I know that storytelling is what would save me. Stories have always saved me.

Which is why I blog, and why I volunteer my time tutoring and sharing my love of poetry, storytelling and the imaginative/creative process with kids. It’s why I endeavor to grow something in the Greater Houston community like 826Valencia. And it’s why I’m always searching for new ways to play with the way I tell stories. Case in point, this new thing I’ve invented (or at least I’m pretty sure that I did!), called a klepto-collaborative poem.

I hope you enjoy this poem I created from TEDxWomen; please feel free to pass it on.

I often ride through the neighborhood where MECA is located. Houston’s oldest graveyard, Glenwood Cemetery, is just 4 blocks over and the land there still has all the hills and dips and curves, mazed with twists and turns of bayou, home to centuries-old trees. Which is to say that unlike most of Houston, this space never suffered from the smoothing and flattening and complete de-foresting process that our great city’s early planners decided was necessary. Though much of Houston was and is flat by its nature, most land surrounding our bayous–and our city is riddled with them–used to have gorgeous grades of incline and decline, thick woods. A visit to Glenwood Cemetery lets you see what our city used to look like in terms of topography.

Those hills are excellent training for any walker, runner, skateboarder, wheeler, cyclist; major thigh-burning is afforded, trust me. I’ve suffered the results on many occasions, but the upside is that I was well prepared for both of my NYC Marathons because of the ups & downs of that tree-lined, history-rich graveyard.

Anyway, I find it an immense case of coincidence and serendipity that I’m going to be taking part in an evening of poetry among other equally-passionate word lovers tonight, in a neighborhood I travel often–only a stone’s throw from a place where I feel so connected to my hometown, and by extension, to my family.

Whether you’re from here or just visiting, put this neighborhood on your list of Things to  See. For a sneak peek, you can view a collection of stories about the historic homes of the Old Sixth Ward on YouTube. Here’s the first in the series. The architecture is pure art in and of itself, but there’re also individual expressions of creativity and personal flair throughout the neighborhood. My husband Gary is a photographer–as was my father–and we visit often to take pictures.

My father, both a photographer and a realtor, loved to take pictures in the older wards of  Houston. In addition to being a realtor, one of his passions was to purchase a dilapidated old home with good bones (for next to nothing price-wise) and restore it to its former health and beauty before selling it. I spent many an afternoon, on weekends or after school, helping my dad paint & hammer & sand. They are some of my most precious memories of our together-time. The streets and houses of the Old Sixth Ward bring back those memories, that closeness.

I can’t wait for tonight; it’s going to be So GOOD. This event is billed as the first major poetry slam in Houston, and will bring over 20 nationally known and ranked slam poets together to compete for a first place cash prize of $1,000, a second place prize of $500 and a third place prize of $250. You can read a bit more about the evening from Free Press Houston.

Buddy Wakefield is going to be there.

He’s somebody you absolutely have to see and hear in person. He’s also got one of the most artful and entertaining web sites I’ve ever come across.

Tickets are only $10!  To purchase Tix & see an interactive Map, go HERE. You can also purchase tickets at the door for $15. Heck, I think a chance to visit with Luke the poetry dog

is worth 15 bucks alone and getting to watch Buddy Wakefield perform  is worth thrice the ticket price–but you’ll get ALL of the live-action excitement and word-gorgeousness of this amazing poetry slam to boot. What. A. Deal.

Come on out tonight, Houston Spoken Word & Poetry lovers–You’ll be so glad you did!!!

If you’ve been a reader on this blog for very long, you know how much inspiration I gain from Michael J. Fox.

Here he is reprising his performance from Back to the Future, playing “Johnny B. Goode.”

To read the full article from HuffPost Entertainment about Fox’s annual benefit bash for The Michael J. Fox Foundation, A Funny Thing Happened on the Way to Cure Parkinson’s, go HERE.

Looks like it was a fabulous event and I sure to heck wish I would’ve been there.

Go, Michael, Go!

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 met a handcyclist on a bridge–it was a big bridge with a great view, the Queensborough, I think–and he’s somebody you should know about. His name is Paul Kelly and his story is worth sharing. Paul truly inspires me.

Check out his blog 2008 Miles of Hope, where Paul states:

“As an American with a disability, I understand the challenges that face these brave men, women, and their families. I also find their personal stories of triumph over adversity to be my motivation. There is no better place in the world to have to live with a disability than the United States. We are blessed with technology, opportunities, and compassion that are available nowhere else.”

He and his wife Sally both raise funds and awareness for our nation’s wounded soldiers. Paul rides with Team Hope for Warriors; Sally is also doing a marathon. Together, they’ve raised over $38,000 for this worthy cause!

This is Team Hope for Warrior’s mission statement:

“Team Hope For The Warriors® unites the wounded community with athletes and their supporters in the combined goal of competing at endurance events worldwide. For the wounded, the Team engages the competitive spirit so that these warriors are once again defined by their achievements rather than by their injuries. For able-bodied athletes, the Team provides an opportunity to take personal goals to the next level by fundraising in honor of America’s heroes. As the Team grows, it is our wish that all of our athletes will be motivated by a community’s pledge that no sacrifice will be forgotten, nor need unmet.”

What’s more, this guy really got me pedaling up the incline of that daunting bridge. I’d been struggling, to say the least. The runners were zooming by on the main thoroughfare of the bridge to our left. In the odd mix of light and shadow, wearing a rainbow variety of brightly colored jerseys, the racers looked like Skittles with arms and legs chugging by over there.

Paul had two volunteer guides from Achilles accompanying him. I wish I could remember their names but I was in a kind of cycling-induced brain-fog that happens when I’m attempting to manage pain and persevere in the face of an obstacle (like a huge frackin’ bridge-incline with my bad knee violently rebelling). Paul’s guides were really sweet to me: they took photos for me, cheered me on, engaged me in conversation so that I’d be a little less focused on my physical state.

Dudes, if you’re reading this, y’all rock :0)

We all paused to rest a moment and take in the view on both sides of us: those runners, the river and the cityscape and the boats.

It was sunny out but we were in the shade of the overhang of the bridge, which is why I look like I’m cycling in Alaska–over iceberg-infested terrain–instead of New York City. (and also why these photos look a little odd;Photoshop to the rescue)

After a bit Paul’s guides took off running ahead of us. They needed to get a really good head start because we were at the apex of the bridge where Paul and I would be going from knee-screaming pedaling uphill to Woohoo! flying-downhill mode. So Paul and I had a great conversation while we allowed time for his guides to run the rest of the bridge and get into position at the curve of road after the bridge’s end, where they’d reunite with him.

A note of interest: NYRR places a row of hay bales, stacked two high, and flanked by those neon orange traffic cones, at the curve that comes right after the end of the bridge. Apparently racers with wheels, like Paul and I, have been known to have too much of a good time on the free ride down, failing to realize the need to slow down (brakes!) sufficiently for that turn.

Of course, if NYRR would simply move the far line of that turn out about 20-30 feet, there wouldn’t be such a sharp turn. Alas, the race-course is calculated for runners and the occasional walker–not those of us with wheels–as the primary concern. With the extra room for turning, those of us who have to go all-out cranking and turning push-rims and pedaling the long slog UP the bridge would get to enjoy the fruits of our labor for the duration of DOWN.

Which would be really, really sweet.

Paul Kelly and I found we have a lot in common as we talked atop the bridge; namely that we were both racing the New York City Marathon that day for causes we’re deeply invested in. He for those wounded warriors, and me for a slightly different but no less valiant brand of warrior, our nation’s firefighters. Paul and I are hoping to ride together in the future; perhaps a joint ride for our respective charities of choice. I love making connections with other 3-wheelers riding for a cause. I get inspired all over again, for their charities and for mine!

Thank you, Paul, for all you do for our country’s soldiers. And thank you, also, for firing me up for the remainder of the race. We happened upon one another on that bridge right when I needed some cheering on–a reminder that I wasn’t alone in wheeling uphill. Roll on, my friend!

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

I have until November 21st to meet my goal of $3000; I would be incredibly grateful if you’d help me help firefighters get the much-needed training & equipment they need!

If you’re not familiar with my association with Team Leary Firefighters, you can read the story on my ABOUT page.

Thank You ~

I say “conditions” for lack of a better word. Pain and grief overlap, share space. They might even do more than that. In my life they seem to be permanently tangled, inseparable. Don’t they often sing their dirges and laments with the same voice, from the same locus of loss and pleading?

You could put a dozen–or for that matter, a hundred or a thousand–people with multiple sclerosis together and no two would have the same set of symptoms or suffer those symptoms to the same degree. Pain is the wild card, in that its source can be a myriad of things. MS is unique in each individual, which is why each person’s pain is equally unique.

In the beginning of my disease-course most of the pain I experienced was from migraine headaches. There was also the kind of numbness, electrified tingling and sharp stabby pain that happens when your formerly asleep foot or leg begins to wake up. Except that my limbs just went to sleep of their own accord, without the kind of compression or being too long in one position that causes that sensation in the average person. The MS variety of this pins and needles pain is like that asleep foot’s waking-up pain, but exponentially squared.

It should be said that a lot of people with MS have no pain, or at least that’s what I’m told. In fact when I was going from doctor to doctor back in the early to mid 90s they kept telling me pain was not part of the clinical picture of MS. But now we all know better. Which is to say that the medical community will now acknowledge what many MS patients already knew, only too well.

Pain in MS patients comes not just from the symptoms of the disease itself but also from the treatments. Corticosteroids, for example, are used to relieve inflammation, which supposedly lessens the duration and severity of an exacerbation. But corticosteroids wear away at all the good cushiony stuff between joints. Which is why, after many IV steroid treatments over the years, I have crazy-bad hip pain. It’s similar in nature to that of arthritis, but worse. The medical term is avascular necrosis. I have both arthritis and avascular necrosis. A couple of years ago these were both evident only in my hips on x-rays, but now the deterioration from both conditions is visible in my knees, shoulders and elbows. I also have arthritis in my hands, most especially in the lower thumb joints, where the thumbs connect to wrist.

I’ve talked about the effects of gastroparesis before (paralysis of the vagus nerve, which controls digestion). That pain and nausea is like being trapped on an automated unmerry-go-round with no way to get off the ride.

Unless you’ve had to deal with pain, serious pain, day-in and day-out, I’m not sure that I can describe accurately the toll that it takes. It moves far beyond the physical. Into the mind and spirit. It can be all encompassing. What I’ve been trying to understand of late is how better to handle pain. How to deal with the grief of it. How to fight the exhaustion of carrying it. Constantly. Because it’s getting too heavy. And yet there’s no way to put it down.  No way to let go of it.

This forever and always burden of pain manifests in other ways, too. As fatigue. Mournful, inextricable, undeniable, crushing. I’m trying to say–and I’m sure I’m bungling this explanation–that while, yes, the pain itself is a challenge to endure, it is the ongoingness of it, the days stacked onto nights and more days and longer nights, and on and on of it. The no end in sight, rest of my life-ness of it.

The Bobbsey-twin combo of Pain and Fatigue–that’s what, more than anything, is my nemesis in a life with MS.

This brand of pain-induced fatigue is not really discussed, much less understood. As far as I’ve been able to tell there aren’t even any studies going on about fatigue, ways to alleviate it, to treat it. Whenever I’ve listed fatigue as one of my chief complaints to doctors and nurses, they either fail to acknowledge it, or seem to have heard other words in its place. The most frequent follow-up comment–if there ever is one–is usually along the lines of, “So you’re saying you’re experiencing some depression.”

Which tells me, flat-out, they haven’t the slightest notion what I’m talking about.

Fatigue is barely discussed by the medical community at all. There is a mysterious unspoken-ness, an almost-taboo-ness. Even among us, the patients suffering, fatigue is handled like a dirty little secret. This is due in large part to the way the healthcare profession deals with fatigue–or doesn’t, to be accurate–but also because we don’t know how to handle talking about it either. We have no simple, easy way to convey the full truth of it, the too-layerd and knotted complexity of it. We aren’t sure how to express the extent of how alone and helpless we feel in the face of fatigue, because we’re afraid of sounding like we’re anxious or depressed.

I’m willing to bet that what is often diagnosed as anxiety and/or depression in those suffering chronic pain is actually fatigue of this nature. Which leads me to wonder how many people accept misdiagnoses of mental health when what they’re  actually combating is this burden of through-going pain that has rooted itself, fatiguing mind, body and spirit–ad infinitum.

Every now and then I come across someone with illness and pain in her life–lupus, lyme, fibromyalgia, cancer–and she will share with me that she “gets it.” I recognize it in her eyes, hear the tell-tale sound of it in her voice–that she understands fatigue, knows it the way I know it.  A relief of celebratory proportion follows. The feeling almost causes me to levitate; a little happy-dance ripples through me. Because to have this kind of moment with another person–to stand together and know that she knows about the kind of fatigue that comes of bearing too much pain for too long–that makes all the difference in the world to me, right then, right there, in that no-longer-alone place. Being in the company of that one other person who truly understands is, for a few breaths and heartbeats of time, as good as having someone carry half the load of that pain and fatigue heaviness.

I’m not glad the other person’s in pain, of course. Just relieved, even joyful, to not be alone for a little while, to not be burdened with the full dead-weight of that beast on my back. The torturer so few people in my everyday life recognize or even acknowledge.

“Fatigue.” I hate the word; it sounds so damn benign. The sound of it has no abrasive qualities. No teeth. Not even a hint of stench or sting. Still, there exists no better word for what people like me feel. Which is why it’s so hard to explain to others who don’t know firsthand what’s happening. Which is why pain-compounded illness is isolating. And why it can, and often does, lead to actual depression.

These last few days, especially post-marathon, have been quite lonesome. The experience of being weighed down and mired by pain, drowning in the utter exhaustion of it, and not even being able to express clearly what’s going on–by god, it’s infuriating. But not in that way of anger that can sometimes make you feel empowered–quite the opposite. This too much pain rolled over and over like a tumbleweed into extraordinary fatigue makes me feel completely powerless, even helpless.

I hate not being able to adequately explain the experience, not having a way to say it straight out and have it be understood–by medical professionals, colleagues, friends, loved ones. I hate not being able to have them say back to me, with authority and empathy, Oh, I know what that’s like–and be able to believe them. I feel invisible in my pain and fatigue. I feel as if the heaviness and grief of that combination goes unnoticed. I feel alone with the heaviness of it. If feel overwhelmed by it.

So today I had to talk about it. I had to put these words on the page, and then summon the courage to press that little ovoid blue button to Publish. Even though I know you probably won’t understand. Even though I know you might judge me as overly emotional, anxious or depressed, a bit of a drama queen and feeling sorry for myself. I’m willing to risk all that, to risk whatever conclusion you readers might draw. Because sometimes saying something “out loud”–that very action–makes it more real, allows me to feel just enough less-alone to get me through.

Thanks for “listening,” good readers. Sometimes being heard is the next best thing to being understood.

The writing of this post was a bonza exercise in venting for me, but I realize the reading of it might be a source of bummer-osity for you. So here’s a photo of Luke from our trip to NYC for the marathon. If you’re a regular traveler to these here blog-parts, you already know how much he adores the flora and fauna of Central Park. I’m sure his obvious giddiness with wide-open grassy space, crisp fallen leaves and repeatedly-thrown tennis ball will counteract any potentially downer vibes from this post!

If for some reason those two didn’t uplift your spirits, here’s an oldie but goodie that never fails to cheer me:

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!

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 ~~~