welcome in…


 

I, WIN

My journey as a disabled woman,

living a non-disabled life

BY WIN CHARLES

WITH JEAN TORKELSON

 

INTRODUCTION

Many people are surprised when they see my portraits of crystal-blue seas, flowers drenched in fiery hues, and animals that look like they could leap from the frame right into your lap. They assume an artist with a disability must paint very dark pictures. Well, that’s not me! I have never painted a dull picture in my life, and I never will.

Through my story, I want to share with you the secret for painting life in bright, bold colors that pulse with hope.

I also want to build a bridge of communication between the able bodied and the disabled. Each one of us has a disability, whether visible or not. For each one of us, there is something that binds the heart a little, and makes life a struggle. Whatever that “something” is for you, I believe we need eachother and can learn from eachother.

My disability just happens to be visible. I was born with cerebral palsy, a form of brain injury which occurs at or around birth, and affects speech and muscle coordination. For some people, that outer shell is all they ever see. I must be deaf, blind, or mentally deficient, right? (None of the above!) The pain of being ridiculed and discounted could have cut me to the core, except for one thing: I was raised by a feisty and courageous mother who taught me that I can do anything, and overcome everything.

She was right. I think I have pretty good “creds” for overcoming long odds. Spinal surgery in 2006, which was meant to improve my mobility, actually left me worse off than before. Then, in 2010, I lost my Mom, when she died following a brain aneurysm. She had been my rock, my caregiver, the person I called “my second brain.” At that point, I’m sure few people would have gamble any money on my future, and I wasn’t even 24 years old.

So I’m not going to kid you that life is some sort of big sunshine factory. My challenges have led me into some intensely dark valleys. But I’ve learned that if you keep moving forward, the shadowed roads are only one part of the journey. If you refuse to stop there, the shadows are no more than passing scenery. So whatever you do, don’t stop! If you keep seeking and trying, you will emerge on the other side.

I know this is true, because the two darkest points in my life — both catastrophic, without exaggeration —  have led to my greatest joys and accomplishments.

The first catastrophe was my failed surgery in 2006.

As much as anybody can look forward to surgery — I did. I was only 18, and my spine was already beginning to curl up like a clenched fist. Over time, this condition, called scoliosis, could lead to pressure on my internal organs and rob me of my ability to walk. Doctors said surgery could lead to more freedom, truly a life changing improvement.

But the odds broke against me. I had an allergic reaction to the anesthesia, and my spine went “dead” on the operating table for 20 minutes. Now I cannot get around without using a walker. The much anticipated surgery changed my life all right — it took my independence away.

I became major-league depressed. Then came the anger. My mother had always ecnouraged my independence and working stuff out for myself, so I think she held back a bit, to see how I would handle this crisis. But when my physical therapist suggested I start seeing a psychotherapist, Mom said, “That’s enough.”

“Do your physical therapy, but don’t talk to her anymore about how you feel,” Mom said. “Win, I know you can solve this on your own.”

When we got home that day, I went on the Internet, where I found a digital art program, which I downloaded. I had always loved art as a kid, and it didn’t take long to realize this passion had never left me. Within a year I founded Aspen Rose Arts, which today is a thriving business, selling my digital art creations all over the world. Cards, portraits, mugs, t-shirts — I might lack lack physical mobility, but there is nothing I can’t do in the art world! (To see my work, just Google “Aspen Rose Arts.”)

Unlike the failed surgery, the second catastrophe was completely unscheduled. On August 10, 2010, my mother complained of a sudden headache. She died soon after we got her airlifted to a hospital.

The void was indescribable. My mother had brimmed with such energy and adventure. She was born and raised in Nassau, the Bahamas, and that put a global kick to her step that she passed on to me. She taught me there is no slowing down for CP — yes, cerebral palsy is a challenge, but it’s not the definition of who I am. She made sure that the Bahamas became my second home and that her family became my family. She literally opened up the world to me as we went on cruises and jaunts that circled the globe, from Canada to Russia.

I even owe my existence to her sense of fun and impulsiveness. One year in the mid 1980s she decided to go to Aspen, Colorado for a vacation. Guess who she met there. My father was born and raised in Aspen, where he runs an audio business. Mom was a world traveler, but after they married, Aspen became her home, too.

So, that’s how I grew up on one of the most privileged addresses on the planet, which some people find rather ironic, given my physical limitations. They wonder, how many problems could possibly exist in this mecca of money, easy living, and celebrities? (You would be amazed.)  Aspen is like everywhere else, because human nature isn’t defined by an area code. I grew up expecting that on any given day, I better be ready to face some nasty jokes and rude stares.

“You know why they’re acting like that, that don’t you?” my mother would say. “They are afraid of the unknown! Fear is one of their disabilities.”

When my mother died, I lost that wise teacher. She had always believed that there needed to be better communication between the abled and disabled, and she encouraged me to become one of those liaisons. And yes, that was already underway: By 2010, Aspen Rose Arts had become a bridge, a place of understanding, where a disabled artist (me), could communicate effectively and bring beauty to the able-bodied world.

But now, without my most inspiring teacher to guide me, what more could I do?

Three months after Mom’s death, that question was answered. In November, 2010, I was asked by a dear friend to join a new nonprofit organization, Valley Life for All. Our mission is to find the appropriate social service assistance programs for any disabled person or senior citizen who lives in the Roaring Forks Valley. Today I am the organization’s vice president, and something of its poster child. We have a 10-member board, and estimate there are about 500 people, and maybe more, who need our help finding the right assistance for their needs.

Losing my mother was truly a catastrophe. But it also led to the writing of this book. In telling my story, I know I am honoring her. She taught me not to be intimidated by life, to keep moving through the dark times, and learn to paint life on a bright canvas.

Now, as you hear my story, I hope it inspires you to paint life in the bold colors which fit for you.

 

——————————————

 

            CHAPTER ONE

MY FAMILY

 THE POWER OF UNCONDITIONAL LOVE

(I arrive, and am more complicated that I thought)

 

I want out. Right now. C’mon, let’s get this done!

That could be me talking, from the very first moments of my existence, right up to the present day.  If I don’t get my way, I take matters into my own hands. The problem is, the first time I expresssed my point of view I was still in the womb.

And boy, did I cause a crisis!

The day I was born, June 22, 1987, my mom had stopped by a friend’s house. While she was there, she commented that it seemed like she was having mild contractions. But I wasn’t supposed to be born for months yet, so she was ready to shrug it off. My mother never believed in babying anybody, not me, and definitely not herself. Even tho she was 45 years old by that time and I was her first baby, it was just like her to figure she could handle the moment without help. But her girlfriend thought differently.

‘Hey, Carolanne,” she said, “You better get to the hospital. I think Win’s coming!”

She was right. “We” — the three of us — raced to the hospital, just in time to see me come into the world. At 1 pound, 13 ounces, I still hold the record for being the smallest kid born in Aspen Valley Hospital. My doctor, Jan Kennaugh, who would continue to be my doctor and friend to this day, believes that my extremely premature birth was most likely the cause of my cerebral palsy.

However, the CP diagnosis would come somewhat later. The first crisis was to get me stabilized and on track for making a “fighting weight.” (That was literally true. At under two pounds, I was in crisis. I needed to get to a place where I could have a fighting chance at life.)

Aspen Valley Hospital didn’t have the resources to help me, so my parents made the decision to airlift me to Children’s Hospital in Denver.

On a roadmap, Colorado’s capital may seem like “inches” away, but in the Rocky Mountain state, the journey between Denver and Aspen is either by air, or you can figure on a road trip of  least three hours. And that doesn’t include some mountain passes at an altitude of 10,000 feet plus! Either way, it’s not like bopping over to your local emergency room. That airlift to Denver would be my first taste of challenge and adventure, and it began from my very first days of life. And it wouldn’t be easy.

When I left Children’s Hospital in Denver, I was already six months old.

Sometimes I wonder if my parents knew what they were in for. It was a critical time for me, and a “step up to the plate” time for them. But maybe that was my first lesson that every one of us is meant to find blessings even in our biggest challenges — no matter what they happen to be.

Sure, if I had a choice, I would never have chosen CP,  but that doesn’t mean it hasn’t brought me blessings. (Yes, I mean it, and I plan to prove it to you!) I want to show you how my life has grown and expanded, even in the grip of this physical disability.

You can find blessings underneath the greatest negatives in your life, too, if you only look!

For one thing, CP has forced me to stop and look around me. Given my “C’mon, let’s get it done yesterday!” brand of impatience, maybe if I hadn’t been slowed down by physical road blocks, I would have roared right past my true creativity, and in my rush, ignored the talent that would make me most happy. Instead, I found a real happiness in the world of art, and in motivating people who also face steep life challenges.

But first and foremost, unless my family had to wage a real survival battle on my behalf, it’s very likely I never would have learned to appreciate my parents. Because I arrived in this world in full crisis mode and required a full army of doctors and health providers to help, it is very much on the record how much my parents fought for me from the very first days of my life.

Sure, I wouldn’t know about all they went through until I was much older. But those early and deeply worrying days of my life revealed the quality of my parents. I had handed them a crisis and they came through with flying colors and an awesome show of support and love.

I think that’s why I like to joke that “God blessed me with cerebral palsy.” What I mean is, first of all, my family had the financial and physical resources to take care of my no matter how big or small my needs may be. But more important, they had the “resources of the heart” too. In other words — from the very beginning, they loved me.

Some people might argue — “Sure, if we had the money your parents had, we could have coped too.” What shallow thinking! Hardship comes in all kinds of packages. For my parents, the choice to love me didn’t revolve around whether they had the money to do it, but it did impact them in a way that is just as important — what it would do to their freedom.

You see, until I came along, my parents were the complete masters of their own lives. They ran businesses and made daily decisions that other people carried out. Each of them had chosen work that was fun and absorbing, and when their work was done, they had all of Aspen and a wide circle of friends to enjoy the “after hours” with them.

Once I came into the picture, everything changed. I cannot even imagine all the days my mother and father spent in drab-colored hospital waiting rooms, and being ushered in and out of impersonal intensive care units, all to be with me. They were used to directing businesses and making their own decisions and plans — now they had to wait until doctors told them what had to be done. The carefree life they had enjoyed for years was over, at least for a while. I think of the hours they spent in Denver, away from our home in Aspen, as they prayed and waiting for calls from the operating room where I was in and out of surgery. Through everything, my family has always had the determination to see me through.

But I think I know why my mom and dad were so willing to bet on a long shot — me! I think it’s because finding eachother was a ‘long shot” too.

 

FROM OCEAN PARADISE TO MOUNTAIN RESORT:

AN UNLIKELY MEETING

 People love to vacation in the Bahamas. But Carolanne Crothers couldn’t wait to move from the Bahamas to somewhere else.

Carolanne — that’s my mother – grew up in Nassau, where my grandfather headed the regional offices of Caterpillar Inc., one of the largest equipment and engineering services companies in the world. A lot of people would be content with being from a wealthy family and living in one of the planet’s great tourist destinations, which offers “a distinct blend of international glamour and tropical ease,” as one gushing travelguide puts it.

But ease and comfort wasn’t my mother’s thing. She wanted to keep moving forward and improve her own life. (My grandmother, Win, whom I’m named after, has the same kind of drive and ambition. She is one of my heroes, for sure.) So, thankfully for me, Mom inherited double doses of “over achiever” DNA from her parents. That is exactly what she would teach me to do, despite all my challenges and setbacks — to always strive for the best, no matter what the obstacles. And that’s what I hope to teach others by telling my story.

Anyway, at age of 28, restless, wanting more, Mom decided that moving to the United States was her best shot at creating a full and vibrant life for herself. She figured if she could get off the island, she would have many more opportunities to expand her own creative and business instincts. In that restless frame of mind, trying to figure out what to do, she got in  touch with several friends she had gone to college with in Atlanta, Ga. They were living in Aspen, CO, and invited her to come for a visit.

That’s how Mom went from growing up in an ocean paradise to settling down in one of the great mountain resort towns in the world.

One night on her vacation, Mom’s friends took her to the Jerome Bar, which is in the great Jerome Hotel, a legendary part of the Aspen scene. That night she met my Dad, Tim Charles, who was working in Aspen as a sound engineer.

Dad’s family was from Boston and New York. He had come to Aspen in 1976 after graduating from Georgetown University. Just like Mom wanted to get out of  Nassau and seek a more complete and well rounded life, Dad wanted to get out of the more structured atmosphere of the East coast and find a freer life out West.

Now, if Mom and Dad hadn’t met … would she have finished that vacation in Aspen and moved on to explore another place? Or would she have continued her Aspen adventure, got a job, and stuck around, at least for a while? Who knows? Reality is, Mom and Dad did meet, and that was it. She stayed.

In Aspen, my mother found what she had dreamed of. Life with Dad, in that legendary mountain town, really did expand her world.  She became the owner of two well-known jewelry shops in Aspen which specialized in fine gold and silver jewlery. First, she opened Magnolia’s and later she bought a second shop, and managed both, with flair. Some people wondered how she could get everything done in a day, but I know — it’s part of her personality to drive herself and stay at the top of whatever she is doing. She always finished every project to completion.

So it’s no wonder that when I came along, she used those same life principles to guide me and spur me on to do my very best, even during the darkest days of my life.

 

SOMEBODY NEW ON THE SCENE

But even Mom didn’t guess that one of her great future adventures was going to be  — me! After she and Dad met, their lives meshed together as a twosome. All throughout their 30s and into their 40s, Mom and Dad lived the life of motivated, educated, carefree, go getters — make that childless go-getters.

They enjoyed all the perks of being young, successful entrepreneurs in one of the most glamorous resort towns in the world. Many celebrities were counted among their friends and clients. Dad opened his own audio equipment business and specialized in the installation of high-end audio systems in private homes. He offered a much prized service to a community filled with residents in the entertainment industry, who valued their privacy and only gave their business to someone they could trust. Meanwhile, Mom had her high-end jewelry shops and was able to cater to clients who could enjoy them.

Then I came along.

Now, you would  think the news of this newcomer barging into their lives was a real crisis. Here was Mom, a successful 45-year-old business woman living in one of the planet’s most fabulous playgrounds — and now she discovered she was going to have a baby! To be 45 and  pregnant has to be a lot to absorb for any woman (or any couple), but imagine the shock if your whole life has been purring along at a comfortably high speed, and suddenly you find you’re racing toward a thick, impermeable wall made out of baby blankets.

But Mom and Dad took the news in stride. For Mom, the choice was clear. She gave up her jewelry shops and turned her high achieving, high intensity  personality to the next great adventure in her life — being a stay-at-home Mom.

I may have been a brand new, never-before-seen event in their busy lives, but at every turn, my parents had responded as positive thinkers and optimists. I know that was their frame of mind when I was born at the height of the beautiful Rocky Mountain midsummer of ’87.

Despite the fact I had arrived as an extreme, record-making “preemie” and had to be airtlifted to Denver to save my life, my parents had every reason to assume I would rally, gain strength and weight,  and come home sooner rather than later. Then life would go on, pretty much as before — but with a new daughter in it.

In future years, they undoubtedly figured, they would have a harrowing story to tell about how I was born, and how scared they were, and how incredibly tiny and vulnerable I was — just a tiny gasp of life, lying helpless in an incubator.  But by then it would be a real life adventure story that turned out well, a story that was fun to repeat on each of my birthdays, just before we blew out the candles on the cake. And everybody at my birthday party would groan and say “Boy, that must have been a frightening time!” and then someone else would pipe up, “But look at Win now!” and we would all laugh and go on to another story.

But things didn’t turn out to be that simple.

At the time, of course, I knew none of that. Yet that early time of my life — well before I was even aware of my own existence — is a very important part of this book. One of the messages I want to share is this:

You can get through any challenge if you have the support of unconditional love.

In those early days of my life — even before I knew what my struggle was — my parents were there, helping me.

Yes, I know virtually every parent on this earth loves their children unconditionally, yet they may never have the opportunity to really show that unconditional love the way my parents did. . Although my life has presented more obvious challenges, and in many ways deeper ones, than most children face, the upside of having so many unusual obstacles in life is that they have resulted in a very clear record of what unconditional love looks like.

Now, for some of you the challenge is not having a strong parent support system. Well, I hope you’ll let me help you with that, too. Because I have known what it is to lose my main anchor, my mother, on one, terrible, sudden day. I also had to learn how to cope without her daily strength. (But that’s getting ahead of my story.)

Anyway, Children’s Hospital was at least three hours away by car, so my parents rented a house in Denver to be near me. They also had to make trips back and forth to Aspen, a tedious trip if you aren’t do it for fun, like on a ski trip. At least one time, they were forced to slog the distance in a driving snowstorm. (Which is not fun, even when you’re supposed to be having fun!)

Of course I was too young to know all this. But I have been privileged to get to know the wonderful doctor who was there with my parents — and me — right from the beginning, and is still in my life today, as I write this book.

Her name is Dr. Jan Kennaugh, and recently I asked her to recall what she could about those early days of my life. I am so grateful to her for her memories of those difficult days, and especially for all she did to help not just me, but my parents:

“I took care of Win when she was a premature baby at Children’s Hospital,” Dr. Kennaugh wrote.  “Since I am a hospital-based Neonatologist I was not involved in her subsequent medical care or CP diagnosis.  But I can shed some  light on the first months of her life.  Her parents were unbelievably devoted to her despite her being an extremely ill premature baby hooked up to machines in the Neonatal Intensive Care Unit.  They expressed eternal optimism despite the severity of her prematurity and degree of illness. She required a ventilator for a prolonged period and experienced bleeding in the brain which likely was associated with her later diagnosis of cerebral palsy.

Her mother delighted in buying clothes and toys for Win and was able to stay in Denver with her for prolonged periods.  Her father, Tim, made the journey from Aspen to Denver frequently to be with his daughter.  They were both very involved in her care and, despite some medical setbacks, were determined for her survival and to provide the best life for her.”

 

             ANOTHER MAJOR BLOW

 But not every doctor was as compassionate as Dr. Kennaugh, or took the time, as she did, to observe how much my Mom and Dad loved me. Shortly after the crisis of my birth had passed — and I was stabilized enough to begin the road to life — a different set of doctors had a new shock for them.

One day, with little advance notice, they sat my parents down and told them I had cerebral palsy. The condition, a category of brain injury that occurs at or near birth, has been well known for many decades, but it’s still somewhat mysterious because it can have many causes, and they are often difficult to trace. In my case, being born at the “record making” weight of 1 pound, 13 ounces most certainly starved my body of precious oxygen. Of course, in my extreme infancy, while still being hospitalized in Denver, no one could really predict what the effect of CP would be on me, as an individual.

Yes, doctors now had enough information to hand down this “life sentence,” but they still couldn’t tell my parents how severe the sentence would be. Would I be able to talk? Would I spend my life in a wheelchair? Would I be able to think and communicate with others? No one knew the answers to those questions yet.

My parents cried. They were already exhausted from caring for me, and now they had learned that the pressure would not be easing up, maybe for a lifetime.

Then the news got worse.

One day a herd of doctors bustled in to see Mom and Dad. They acted very self important and rushed, like they had somewhere else to get to as soon as they had delivered the news. One of them took the lead.

“We recommend that the best outcome for your daughter, and for your family, is to place her in an institution,” he said.

Wow! With all Mom and Dad had faced, that blow was the worst. Insulting, too. And frightening. Did it mean the doctors would abandon my case? They wouldn’t help anymore?

First, my parents got angry.

“Hell, no we’re not putting her in an institution!” my Dad shouted. “We’re paying you to tell us the best way to care for our daughter — not how to get rid of her!”

Of course the doctors tried to explain they were not getting rid of me — they could visit me whenever they wanted, and that I would get much better care in a fine facility, and that professionals would be much more capable of caring for my needs …..

Blah, blah, blah.

“Forget it,” Mom said. “Next?”

But there was a treasure underneath all this “official” trash talk. Yes, great doctors do exist, and the first and formost treasure among them is Jan Kennaugh, who is my doctor to this day. She fully supported my parents — and me — and gave them hope and insights about how we could make our life together, as a family.

So we moved forward. Blessings, and love, were following me, despite all the pressures and the frightening unknowns.

Yet the journey was far from over.

 

 

NEXT: LIFE STANDING STILL WITH CP

 

CHAPTER TWO

STANDING STILL WITH CP

“I want people to really see CP, as it looks through my eyes

I look in the mirror. The girl who looks back at me has long, shiny chestnut-colored hair and wide green eyes, just like my Mom. As I look closer, I can almost see Mom, although the face that looks back at me is much longer and narrower than hers. Still, what I see is a pretty girl who is 100 percent herself, with almond-shaped eyes and arched eyebrows that a lot of girls would die for, and a peaches and cream complexion that morphs into a rosy blush in our Colorado winter.

I have to say — on a scale of 1 to 10, that girl is clearly an 11!

But the mirror doesn’t show everything. Yes, my chin juts forward with determination; clearly, it expresses my personality, which says, “Go for it!” But the  determined slant to my chin also represents a daily balancing act to hold my neck in place, which sometimes leads to shooting aches that radiate through my neck. And my long, narrow face isn’t necessarily from my family genes, but from the effects of having my head, in effect, “squeezed” for days and weeks in a ventilator when I was still a newborn.

Those negative things are as much part of the girl in the mirror as my green eyes and mountain-healthy complexion.

And so, as I study myself in the mirror, I almost have to laugh at all the contradictions locked behind that one, interesting and (if I do say so myself) pretty face. Ever since I can remember,  my mind has raced with ideas and opinions, yet long after most kids were chattering together like a flock of Bahamas parrots, I still couldn’t say a word. (Maybe that’s why I love art so much — even when I could not speak, I could still paint pictures in my mind.)

As for my dreams of the future? Now there’s a contradiction, too. If you ask me what I would like to be, I will answer that, more than anything, I would like to be a ballet dancer. I watch the elegance and precision of the dancer’s movements, and the lovely, light, arch of her neck as she is soars into the air in the arms of her strong partner. When I watch a beautiful duet, it seems to me like the ultimate freedom.

Other times — like, say, during the Olympic Games — I watch the ice skaters perform and yes, that’s where I would like to be too, in the center of the Olympic arena, vying for the gold. (In a very wonderful way, I did get as close as you can get to the Olympic spirit, but I’ll save that for a few pages later in my story.)

For the moment, I’ll just say that ballet dancer and ice skater are two of my many secret “wish I coulda’s.”

So much for Win the Dreamer.

In real life, I lurch along, clumping a metal walker into the ground with each step. Compared to most people, I am as slow as winter molasses, especially since my disasterous failed surgery in 2006 destroyed most of my remaining mobility. (Still, I have to say that my upper arm strength is amazing. People lift weights to get rippling biceps, but I find that lifting a metal walker with each step does the trick just as well!)

My spine is not straight, which means my head protrudes forward from my shoulders more than the average person. That’s what gives me frequent neck pain, and frankly, that’s what  makes my profile jut out a bit like a turtle’s.

In other words, while I would like to be known simply as a talented, good looking young woman with a lot of drive to succeed and dreams to follow (all of those things that make me, me), I also have to make room for one rude interloper in my life: It’s name is cerebral palsy.

On one level, cerebral palsy is not complicated, like a rare genetic mutation or an exotic disease. By comparison, CP is about as uncomplicated as a blow to the head.

Actually, that’s what CP is: a blow to the head.

Cerebral palsy is a condition caused by a brain injury which occurred near or at birth. My CP came about because I was a preemie and born while weighing under 2 pounds. In that fragile state, I suffered bleeding in my brain. I am one of about 800,000 children and adults in the United States who are living with CP. Every year about 10,000 babies develop the condition, and that number has stayed constant since the 1980s … the decade when I was born.

No matter what causes CP (whether it’s oxygen starvation at birth, or some kind of birth trauma) the result is a roll call of neurological problems that changes one’s entire life. One minute you’re cozy and healthy in the womb, and the next moment Mother Nature has hauled back and thrown a cruel punch at a helpless little baby.

The challenges are different for each of us with CP. For me, it was as if Mother Nature was handing down a life sentence in these words:

“I know you are a gifted child;  you will see the world in your own bright, unique way, and you will want to communicate your inspiration to others. You have been given drive and stamina and a never-give-up spirit, and you won’t ever be afraid to speak your mind. But I’m not going to let you off so easy! It will take you years to discover your artistry, because first you will have to spend long hours just learning how to speak. Your drive and determination will be tested to the limit, because first you must learn how to master your wayward body. Your personality sparkles like the Fourth of July, but some people will think you are slow. You will be bursting with a quick wit and lots of opinions, but for many years you will struggle to speak your mind.

And oh, by the way — someday you’ll want to climb Mt. Elbert with your classmates. You’ll be able to go, but each step will be as comfortable as hiking over a rock field on ice skates!”

So Mother Nature said. But I believe in having the last laugh, even on Mother Nature.

 

MOM TELLS ME HOW IT IS

I remember the day my Mom told me that I had CP. Some people are surprised that I was already in the 7th grade, but even before that, I was learning to adjust on my own. Sure, from the time I was 6 years old I wondered why I was different. But whatever challenges I had (and there were a lot of them) I dealt with them as they came. I didn’t need a “label” to tell me that life wasn’t, say, an easy walk up Mt. Elbert!

But for some reason, that day was different. The conversation itself is hard to remember. Maybe that day I was especially frustrated, or finding it hard to get out the words. I share a lot of traits with my Mom, including the fact that we both are pretty impatient, get-it-done-yesterday people. Maybe that day I was finding it tough to do everything I wanted to do — maybe I had had a tough time communicating with a friend, or maybe some physical activity (a class hike, or maybe a dance?) was more than I could take on. Maybe I came right out and asked that day, ”Mom, what’s wrong with me?” I can’t remember. Whatever sparked the conversation, that was the day I think Mom felt I was finally mature enough to face life with the tagline, “I have CP.”

“Win, honey,” she said, “we are so proud of the way you tackle life. We know it hasn’t been easy, and that you have physical challenges that your friends don’t have. When your Dad and I think how far you have come since we saw this tiny little preemie struggling for life — Wow! You are succeeding beyond anything we ever imagined possible. We all have challenges in life, but yours are especially tough. And now is probably a good time to put a name on it ….. your challenge is cerebral palsy. But you know what, kid? You are winning!”

Hmmm. Win — the winner. Really? I was quiet for a while, trying to let everything sink in.

Here’s the way I had always looked at my life: It’s one thing to accept that I wasn’t speaking or walking with the effortless ease of my friends, or that I wasn’t the most graceful skier in Aspen (of course, in Aspen, there’s a lot of competition for that spot). But to put a name on it was something new. It was like saying, Yes, CP is me.” It was as if this interloper in my life now had a name, and maybe that meant it now had a claim on me. At first, I wasn’t sure  I liked that very much. Especially since I had been raised to do everything I wanted to do — and yes, that included skiing. I was able to ski until the diasterous surgery-gone-wrong in 2006 further immobilized me.

Besides, who likes labels? Mom was always so free spirited and independent, she had always taught me to fight my own battles without getting into the habit of falling back on a specific excuse, or a label. She wanted me to be confident in myself as I am — because I am wonderful, just as I am! No excuses necessary.

Anyway, I can’t remember everything about the conversation. But I do remember Mom adding these details: “When you were born you had two hemorrhages, one on each side of the brain. One side was worse than the other, but both were pretty bad. You were so tiny anyway — just 1 pound, 3 ounces…. smaller than a doll, a little tiny person you could fit in one hand. Dad and I were frantic to help you. Our hearts were breaking as we watched you struggle to breathe, hooked up to all those machines and tubes. But you know what, Win? Even then, when it was you against the machines, you were destined to be the winner! And eventually you did win!”

I think Mom also explained how it took several months to get the CP diagnosis. But it was only many years later that I learned the full extent of my parents’ pain — one of the worst moments being when they were advised to put me in an institution. Instead, they stood up for me, and how! When I hear that, I’m just glad my parents have the same fighting spirit I do.

But in the 7th grade, it was enough to have a parent sit down and really explain what my disability was.

Especially since I also learned that, on a scale of 1 to 10, my CP is a 10.

 

OUT OF THE TRASH CAN

Oscar. Oscar the Grouch. Lives in a trash can. Complains a lot.

Boy, did I like Oscar the Grouch.

“Oscar” was the first word I learned to say, after “Mom” and “Dad.” It didn’t happen until I was 4 years old, and by that time I had been watching Oscar and the other characters on Sesame Street for so long I felt they were part of my family.

For some reason, Oscar was my favorite. Maybe because Oscar was one frustrated grouch, and I often felt that way too. By age four, most kids are tearing around the house and learning to ride their bikes, and words just fly out of them, as easy as breathing. Me? I was loaded with energy just like every other kid, but CP had pretty much locked me up inside myself. Just like Oscar in his trash can.

My parents knew that speech was the first key to escaping my black hole. They stopped at nothing to find the right speech therapists for me. Their commitment was wonderful. We would traveled  cross country to visit one therapist, considered the best in the U.S. My regular speech therapist was in Grand Junction, which was a good trek away, especially when you are driving in the mountains.

As a kid, sometimes you aren’t as grateful as you could be for the opportunities you are being given by your parents …. it took me a number of years to appreciate how many hours my parents devoted to unlocking my speech capabilities. Talk about “freedom of expression” — that phrase means something very special to me.

But while you’re going through it, speech therapy is brutal. The repetition, over and over and over, of simple, primary sounds — until you have to do it, you don’t realize how difficult it is! But the outcome was pretty amazing. I was doing no less than rewiring my brain. It was like CP had scrambled together all the cords in my head like they were tangled-up electrical cords. It took time and patience to pry apart my jumbled speech patterns and straighten them out.

At one point, my parents investigated the artifical-voice technology used by the famous physicist Stephen Hawking. If you’ve watched him interviewed or have seen one of his TV specials, you know something about how it works — he taps out his sentences on a keyboard, which is then translated into mechanical speech. Could that work for me? My parents ultimately decided against it. For one reason, the technology necessarily produces a rather artificial sound. But more important, I had the capability to improve on my own. In Hawking’s case, his disease, ALS, had totally robbed him of his “speech tools,” so he had nothing to improve on.  My challenge was completely different. I had the tools (they were just not in very good shape) and given time, I could get those tools in working order and learn natural speech on my own.

We also tried another “experiment” that was more successful. As a child, I began to learn American Sign Language. The idea was that perhaps if my speech problems could not be overcome, I could become fluent in the beautiful sign language of the deaf and hearing impaired. However, with learning and repetition, my verbal speech kept improving and by age 7, I was talking fluently (in other words, chattering away like every other kid!)

I am still intrigued with American Sign Language, and I plan someday to build on my childhood skills to master this beautiful method of communication. It would be a wonderful asset to further my goal of being a bridge between the able-bodied world and many kinds of disabilities, including the hearing impaired.

I faced another major CP problem which was just as monumental, in a different way. My hamstring muscles in my legs began to tighten up — it’s a common problem that develops in somebody with cerebral palsy, and makes it even more difficult, and much more painful, to walk.

The operation is called a “hamstring release” and I had it done in the second grade. The surgery snips the muscles so they don’t pull so tightly. Not pleasant to go through. But when you are a kid, you don’t really ask, “why me?” You just accept things, and move forward.  But all those trips to Denver for the consultations and surgeries? Those three hour car rides really got to me — and to my parents. We all had to live with eachother on those rides. (At that point, little did we know that another future surgery was coming — one that wouldn’t turn out so well.)

But that was way in the future. I’m glad I didn’t know. As it was, given all the trips to the “experts,” from Colorado’s Western Slope, to Denver, to the East Coast, I’m sure I played “Win the Grouch” plenty of time with my parents. But they had faith in the future — in my future. I’m grateful to them for building up that faith in me.

 

HI! CAN YOU SEE ME?

I hope you can tell by now that I really want you to see CP through the pages of my book. The problem is, in real life, that often means I am not seen at all.

Like many disabilities, CP can make a person invisible. You have no idea what that’s like until you’ve been there.

OK, let’s back up for a moment. It’s one thing to be laughed at and made fun of because your speech is slow, or because your limbs are twisted and bent like a tree on a wind-driven mountainside. In reality, obvious unkindness and nasty behavior doesn’t happen so much today — in the 21st century, people are pretty enlightened about disabilities. Just because you are obviously “different,” most people know they don’t have to be scared of you, or think you are contagious, or possessed by a devil, as they might have centuries ago. But that doesn’t mean they treat you like everyone else. Many of them act as if you are not there at all.

Today, I run my own artworks company — ‘aspenrose arts’ — and have created a body of artistic work. I also have a role as vice president and spokesperson for a nonprofit organization. Yet many people who don’t know me still talk over me as if I wasn’t there.

If I wave and say ‘Hi,’ many people are so shocked they don’t know how to respond. (It makes me wonder actually who has the disability.)

Disabled people have to get used to incidents like these. As for me, I’ve tried to live by a saying which makes a lot of sense to me: ”Treat everyone with politeness, even those who are rude to you – not because they are nice, but because you are.”

But “being nice” doesn’t mean “rolling over.” My Mom was the main person who taught me to fight back. We would be in a restaurant, or a store, and the waiter would  say something like, “And what will she have?” as if I was the Invisible Woman.

“Why don’t you ask her?” Mom would snap. Boy, did that set them back! But they were learning too. Again, that’s a big reason I am so passionate about writing this book. I want to expose the “blind spots” which we have about eachother, so we can come to a deeper understanding among all of us.

And I’m not saying I don’t have things to learn too.

For example, I’ll let you in on a secret. To this day, I am very jealous of able bodied people. You take so much for granted! Not just walking and talking — you even have the ability to be left alone, just because you look so normal that people don’t even bother to notice you. That’s a real treat which I bet you don’t even think about. As for me, I know that at first sight, people will always be stealing looks at me, trying to figure out what’s wrong …. and yet at the same time they will still talk over and around me as if I wasn’t there. (I like to think of myself as a winner, but that is one example of how I can’t win.)

OK, able-bodied people, here’s another one: I’m also jealous of your freedom. The other day somebody asked me if I could drive a car, and I had to say no ….. not just because of my CP itself, but because the condition also gives me what’s called a “high startle” reaction, which means I can’t stand loud noises — not easy to avoid in heavy traffic.

Still, I grasp at freedom whenever I can. One time, I decided to hike up Mt Elbert with my classmates. We all knew eachother as friends and I felt very comfortable with them. They waited along the trail for me to catch up (I also had an adult caregiver along) and we all encouraged eachother.

For those who don’t know, Mt. Elbert is 14,433 feet high, the highest peak in Colorado and the contiguous US, and it’s a real accomplishment for anybody to summit. As we headed up, the sky darkened and the wind began to kick. As we Coloradans know, it’s downright dangerous to be on a high mountain in a storm, because lightning can pick you off as easy as a sharpshooter picks off a target — at any moment. It wasn’t that bad yet, but we all were pretty sure we wouldn’t be having a picnic at the top.

But my friends and I were there for eachother, as we shouted out encouragements over the wind and through the thin mountain air. Every once and a while a buddy would drop back to see how I was doing. And I sure didn’t lack for comments myself — as anybody who knows me knows, I rarely am at a loss for words, even on a hiking trail more than 2 miles high!

The whole experience, a real day of endurance, reminds me of the wonderful quote by  writer, McCallister Dodds:  “Real strength is not just a condition of one’s muscle, but a tenderness in one’s spirit.” That is really true: As a disabled woman, I’m as aware of the condition of my muscles as any body builder is, and I know that what makes each of us strong is something more than physical prowess.

That day, years ago on Mt. Elbert, let me see something I have tried to build on since then: When the disabled and able-bodied can get to know eachother and to see the world from eachother’s perspective, that clears the way for understanding and friendship.

Anyway, that trek up Colorado’s highest mountain was a real challenge for all of us. Because I am ultra sensitive to cold (again, it’s the CP, which results in poor circulation), the raw, biting wind-screeching day became excruciating. Then it started to rain. We were about halfway to the summit when the leader said we had to turn back.

I don’t think “Win the Stubborn” would have turned around on her own, so I’m very glad it was the rain that kicked all of us toward home.

 

CARRYING THE TORCH

So this is me: I’m a smart, good looking young woman who is impatient and talented; happy, but sometimes grouchy; has her own business and helps represent a nonprofit organization; treasures her friends, loves her family (and dearly misses her Mom!) and has a million plans for the future. She also happens to have CP. Or as I like to say, “I’m a disabled woman, living a non-disabled life.”

I would like to be a bridge between those two worlds — those very different territories which are inhabited by the disabled, and by the able bodied. So, as you take your journey with me through my book, the thing I really want you to understand that both sides have “disabilities.” We all have them, whether they are physical oddities, or deep mental troughs, or fears that hold us back from connecting with others, or doing our best.

We are meant to learn from eachother.

No matter what your unfulfilled goal or dream is, I believe you can learn something from this journey. We are all familiar with the “Survivor” and “Treasure Island” plot genre, where booty worth millions in gold is hidden from sight under six feet of sand and seaweed. It takes searching and digging to find the treasure. Well, people can be like that too — sometimes it takes some digging to uncover the beauty and true richness of a person.

And sometimes, the more valuable the treasure, the deeper and harder to find it is.

So, for the able bodied, I hope you come to see that people shouldn’t be judged for their slow speech or twisted limbs.  Buried inside the person with disabilities can be a hidden treasure chest of talents and potential friendship.

As for the disabled, I want to show you that every challenge you face has just two outcomes: you will either conquer it, or you will make headway over it. Even if your gains seem small (how many billion times did I practice the “vowel sounds” in speech therapy!) they eventually will shine. So keep searching and digging to find that treasure!

For everyone reading this, I want my life story to show that it is always possible to move forward, no matter what the challenge, and, ultimately, win.

On February 2, 2002, I was privileged to celebrate a very big win in my life.

That year, I had a central role in the stirring tradition which opens the modern Olympic Games. Before the XIX Games began that year in Salt Lake City Utah, the world was treated to the Olympic torch relay, where runners take turns carrying the flaming symbol of international cooperation and friendship to the site of the games. That year, runners carried the torch right through Aspen.

One of those runners was me.

I had been nominated to be one of the 10 torch bearers. What an honor! My assignment was to run the Olympic torch one mile through our town. It weighs just a few pounds, so I figured that wouldn’t be a problem. But I remember being concerned about one thing, and at a planning meeting for all of the torch bearers, it turned out I wasn’t alone.

“OK, I know what you’re all worried about — dropping the torch,” the Olympics representative said, as we all laughed nervously. “You know what? Your adrenaline will be pumping so hard we will have to pry that torch out of your hands!”

She was right. I held that fiery torch with everything in me, and turned that one mile course into a true victory lap. People were cheering and clapping along the roadway, and I felt as wonderful as if I was skating for the gold in the Olympics itself.

Later, I bought a replica of that torch so I could have it always with me as a reminder of that day. A friend of mine also was honored to be a torch bearer, and we agreed it was an incredible symbol of how we want to run our own lives.

For me, the torch symbolized that I was no longer “standing still with CP.”

For both of us, that Olympic torch also said, “I have the power to accomplish anything I want.”

 

 

       CHAPTER 3:

GROWING UP IN ASPEN

I may have been dealt a challenging hand, but I’ve still had a share of aces. One of them is my family. Another is my address. After all, not many people get to say they are “true Aspenites.” But I can.

Celebrity playground. Trendy mountain town. One of the world’s most chi chi addresses. Take your pick — Aspen has been described in many ways. I don’t think any of the top ones right now include “Home to Win Charles — Up and coming artist challeneged by CP” — but maybe some day Aspen will boast that title, too.

More seriously — though I am plenty serious about my future — I see the place I live as contributing greatly to the person I am today. Aspen has afforded me opportuntities that I would otherwise not have had. Aspen is a town for winners, and it has helped make me a winner too.

However, I am not the only one. I feel it’s important to point out that all the kids I went to school with have that honor of being “true Aspenites.” They are also winners. But we are a rare bunch. For a town of, say, 6,000 permanent residents, not many were born here …. and 9 times out of 10 they moved here from California or New York.

But for those of us who are “Aspen certified,” this has been a great place to grow up. As I think about all the ways Aspen has shaped me, I am looking out of my window, in the home I grew up in. A milky, winter haze has drifted over the landscape like a thin veil. I suspect right now, beyond my window, it is covering the the entire Roaring Fork Valley. Snow is scattered over our wide expanse of secluded and wooded lawn, which is as cozy and private as any secret garden.

Yes, this is the home I grew up in. This is the home my parents brought me to, after those first anxious months following my birth. Given all the struggle I had to overcome just to emerge into the world, it’s probably fitting that my home is a very secluded neighborhood. It gives me the freedom to decide how I will interact with the world.

Our nearest neighbors are a short trek away — they are definitely not “next door.” Since my Mom passed away, I have been living here with my Dad. Our home is truly a reflection of our lives. Both my Dad and I are active, “keep on keepin’ on”  kind of people.

Back in the 1970s, when Dad was around my age, he left the East Coast and the refined urban setting of Boston. He wanted to stretch and test himelf in the American West, which has always been a destination for figuring out one’s dreams. As he built his audio business into a great success, Dad also became an avid sportsman and skier. He has passed that on to me.

But it wasn’t always so clear I would be able to take part. As I sit, working at my desk, I remember all the many times I struggled as a child, whether it was to find my voice or conquer my limbs. Back then, I would look out this very same window and wonder what life had in store for me. The world of Aspen, and beyond, seemed so free! Would I ever be able to join it?

Now the question is being answered, and I am so grateful. Back then, as I was beginning to absorb all the opportunities Aspen had to offer, it wasn’t so clear.

Yet even then, I had a sense that a world of surprises awaited me. From my window, I was often startled by a parade of fascinating “critters” stalking past. Deer, bears, and coyotes treated our back yard as their own playground. The coyotes scare me the most, I think because of the eerie way they have about them. They aren’t gentle looking like deer, or pudgy and (deceptively) cuddly like bears. Coyotes are sleek and nimble, with watchful laser-beam eyes that seem to be always scanning for prey. They have a presence about them which is unsettling.

But living in the Colorado backcountry, we learn to be alert to any wild animal. When I was about six years old, I remember working at my desk, when I was aware of something looking at me.  Prickles stood up on my neck as I turned toward the window very slowly. There was a brown bear cub standing in my backyard. Yes, while they look pudgy and pretty awkward, you don’t live even in toney Aspen without appreciating the danger of roaming bears.

Yet I watched, fascinated. I was safe inside. Yet that brown bear was like a promise, that a bigger life was waiting for me.

 

                 GET A MOVE ON

            Aspen is a funny mix. Wildlife in our backyard, and five minutes away — a whole other kind of life — wild or not — take your pick!

There is a constant bustle and energy in downtown Aspen. On any given day, you might see  “jet setters” in chic, understated jeans and leather coats, taking their first stroll down Main Street as they try to shake off the time zones of London and Paris. Coming the other way may be a group of young “ski bums” in jeans and warmup jackets just in from Denver for the weekend. Crossing the street may be a couple, just arrived from sea level, still groggy from the thin air at Aspen’s 8,000 feet, who are on the hunt for a small coffee shop and full leaded caffeine.

Few places, especially out of the way places, have Aspen’s diversity. And yet, people on their first visit to Aspen are often surprised. One look at our quaint, “Currier & Ives” Main Street and many first time visitors can’t help but say: “Hey, this is a real town!”

In other words, Aspen is no Hollywood set. It may be “a playground of the rich and famous” but it is also a very cozy, friendly and warm place, that, in many ways, still looks like Small Town USA. The famous Hotel Jerome, where my parents met back in the 1970s, is on Main Street, which is six blocks from the gondola that takes you up mountain.

When I was a kid, my goal was to get up that mountain, too.

Yes, my limbs were imprisoned; my gait was halting, my style was certainly not as fluid as, say, world class skier Andy Mill, who also grew up in Aspen. But despite my physical challenges, I wanted to learn how to ski, just like my friends. So I resolved to do it.

My Dad thought it was a great idea. He is totally at home on the slopes, and resolved to get me there too.

“Honey,” he said, “you may be more slow than your friends, but you can do it!”

Actully, my parents had given me a head start. When I was three they got me on the slopes. I remember having lunch with my “Gran” and then heading out for the mountain, to ski until 3 pm. My Dad is an expert skier, and he would be my companion.

My Dad and some collaborators got together and built a device that allowed me to become very adept on those slopes. It was a pretty ingenious system, which I will tell you about in a moment.

But first I want to go on record  that a lot of my resolve and confidence on the slopes came from Aspen Country Day School, where I got my education. “Country Day” made me feel I could do anything. The teachers and staff encouraged me to make friends and become an active part of whatever was going on, right from the beginning.

One of my favorite memories is the school’s physical education program. At Country Day, as soon as the first snow fell, we were on the slopes, learning how to ski. I went skiing with my class every Thursday and Friday afternoon up until 8th grade. It was a great incentive to do well, especially for someone with extra physical challenges.

As privileged as Aspen is, the school system also places a great emphasis on helping the less fortunate. I remember during high school being involved in service clubs, such as Outreach, which helped people limited in their resources (yes, they exist, even in Aspen). The program was modeled after Denver homeless shelters, and provided Christmas and holiday events and other projects to brighten people’s lives. As we all pitched in I cannot remember at any time being asked to step aside, or being ignored or discounted, because of my own disabilities.

So I was grew in confidence, both in the classroom and outside of it. Aspen is a true playground of the outdoors, and I took advantage of everything. At a young age, I became a hiker — along with my classmates — and became skilled at riding a recumbent bike, which accomodated my balance problems and wayward limbs.

But first, I had to face my physical challenges. Cerebral palsy isn’t exactly suited for fast, strenuous sports like skiing. I have pretty stiff joints anyway, and they can hurt. Add the stress of skiing and the cold, and it’s as if my joints are screaming out, “Stop! Stop!”

But I learned a valuable lesson from this huge, seemingly insurmountable challenge: If you are willing to consider options, ask advice from others, and be creative, it is possible to overcome almost anything.

Dad came up with the innovation that allowed me to learn to ski, and then snowboard: It was a vertical adaptive bar fastened to my skis. I was able to hold onto this upright bar, which acted like a stabilizer and a guide stick. With that in place, I was able to learn the sport.

By the time I was 16,  I was a good skier, and ready to move on to snowboarding. My generation prefers snowboarding to skiing anyway. So I was glad to discover that, for someone with CP, snowboarding is much more natural and intuitive than skiing. I found the adaptive bar worked just as well on a snowboard.

Here’s what’s funny — when people saw me snowboarding down Aspen mountain, they thought I was using a trick board. Cool! They had no idea I’m challenged with CP — they thought I was an expert snowboarder who has invented a new technique. Talk about a valuable lesson — sometimes, even when you think you are living in the toughest circumstances, other people can perceive you as being a winner.

I have been asked if I ever get jealous of able bodied people who glide past me effortlessly. Truthfully, the answer is no. I have learned that if I try hard enough, I can do what the average person can do. I just do it a little differently. And sometimes, like my adapative snowboarding, i even attract some extra, worthwhile attention.

Today, in my mid twenties, I am proud to say that I am a “green” and “blue” snowboarder. (And I’m not talking about bruises, either.) I mean that I have conquered those slopes.

Or maybe what I mean is — on the slopes, I have conquered CP.

 

  GETTING INVOLVED IN ASPEN LIFE

            Of course, a black cloud was looming. The surgery I had in 2006, which was supposed to give me more physical freedom, robbed me of much of the freedom I had already won. It was a terrible setback in my athletic pursuits. It made me very angry, but I was resolved to overcome that too.

My desire to overcome and move forward led to something good. Today, I am involved in a program called Challenge Aspen, an adaptive ski/snowboarding program that was co-founded in 1995 by a paralyzed sportswoman, Amanda Boxtel, and a don’t-take-no-for-an-answer entrepreneur named Houston Cowan. The organization’s mission, as described on its website, is to provide “meaningful recreational, educational and cultural experiences to individuals faced with cognitive or physical challenges.” The words may be a little top heavy, but but the reality of the organization is awesome! Challenge Aspen is now one of the world’s best known active-sports programs for the disabled.

I also have been motivated to push myself in other ways, and Aspen has come through because of its standing as a mecca of sports prowess and hardcore training.

At the Aspen Club & Spa, I have learned to push myself in ways I never expected. Four days a week I pull on my leggings and workout top and head for the club, where I have a yoga class led by a private trainer. Yoga has been found to be of great benefit to people challenged by cerebral palsy. The Internet is alive with programs and advice on bringing yoga into the routine of CP sufferers. I find it’s true — yoga helps free me from my stiff joints and inflexible limbs.

Then there is the Alter G.

What a find! The device, which resembles a giant treadmill, allows the world’s top athletes to train and recover by working out in virtual zero gravity. This is the same device that has given me my mobility, juices my stiff joints and allows me to feel close to full freedom.

I zip into a wetsuit-like contraption which fills up with air. Then I start to walk, freed from about 80 percent of my body weight. It’s an amazing sensation for even the able bodied, but for someone who must fight the drag of awkward, wayward limbs because of a brain injury, the sensation is incomparable. Originally designed for astronaut training, the Alter G is one of those “space age” inventions that has turned out to be so practical in everyday life. It is an excellent solution for the banged-up pro football players, injured skiers and snowboarders, backstrained celebrities who flock to Aspen ….. and for Win Charles, challenged by cerebral palsy.

When I am on the Alter G for 30 minutes, three days a week, that is a precious time of freedom.

Now we have a little informal Alter G community, a group of people recovering from various things. One of my “Alter G” friends is paralyzed from the waist down. But he mono-skis, and very well, too. He is as flexible and skillful on the slopes as any able bodied guy. He can do things on a mountain that many people would be afraid to do, just out of timidity.

I believe this just proves that disabilities are often in the mind. You can be paralyzed from succeeding in life — not because your limbs are frozen — but because your will and your determination are frozen.

I have learned this important lesson from many places and in many ways. First, from my Mom and Dad, who pushed me to be the best, whether the task was learning to speak well or to ski down Aspen Mountain. Aspen Country Day School encouraged me to contribute and strive to be the best. Challenge Aspen introduced me to fellow competitors and friends who know what a real challenge is. And my friends have taught me that if you give courage just a little push, you can accomplish great things.

 

PEOPLE WHO MAKE A DIFFERENCE

            People ask me, “So living in Aspen, you must have a lot of celebrity friends.”

Well, I’m not impressed with celebrities very much. I’m more attracted to people who overcome obstacles, meet obstacles and challenges, and do something special with their lives.

One Aspen guy who deeply impresses me, and who I count as a friend is Chris Klug, the only liver transplant survivor in US to win an Olympic medal . As a matter of fact, a portion of proceeds of this book will go to the Chris Klug Foundation, a nonprofit which spreads the powerful message of organ donation, a procedure which saved Chris’s life and allowed him to go on to compete and remain at the center of the sports world.

Chris was born in Denver (we forgive him for that) and became one of the world’s top snowboarders. In 2000 he needed a liver transplant. Two years later, he was well enough to compete in the Olympics and win the Bronze. Shortly after that awesome accomplishment, Chris founded the foundation, and has gone on high rankings in World Cup competitions.

Then there are Aspen’s unsung heroes. I think of two of them every time I return to Aspen Country Day School, where I spent my childhood years from pre school through the 8th grade.

Since 2010 I have worked at the school, an unexpected blessing and privilege. Each day I can gaze across the pond on the campus, which was always a favorite skating hole for my classmates. Thanks to two special teachers who encouraged me, I was skating on that pond, too.

Shelly was my kindgergarten teacher, and Suzy taught me in the first grade. In those days before the Americans with Disabilities Act, the school, like many insitutions, was pretty quirky in its handicap friendly access. Shelly and Suzy were especially kind and attentive as I was wheeled across truck ramps and over rough pathways. More than once I got slammed on my face as my chair, pushed by an over zealous “driver,” tipped over. Funny, I found kids were usually gentler “drivers” than adults.

Shelly and Suzy also coaxed me to become a good reader and keep up with the rest of the class. It was difficult because I didn’t have good verbal skills and found it hard to hold a book. But these wonderful women said: “Let’s see what Win can do. If she can’t manage it, we will modify. But we will not let Win down!”

I admit that remembering these moments makes me cry. These two teachers helped shape me into the person I am today. They pushed me to my full potential.

Now I am a fulltime aide at th school, and it’s very odd to be a colleague of Suzy and Shelly, my former teachers. Sometimes, to be funny and tease me a little, they share photos of me as a kid with the other children, and tell the kids that they knew me “back when.” That’s pretty weird.

But it’s pretty wonderful, too.

 

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