How Skiing Shaped My Life Part 1

“Skiing – the art of catching a cold and going broke while rapidly heading nowhere at great personal risk.” (Henry Beard & Roy McKie)

I love this definition of skiing, but in my case it couldn’t be farther from the truth.

It goes without saying that sports have shaped the course of many lives.  Some of the most influential people have been sports stars.  Without the love and talent for the sport, their lives would have taken a much different track. While I am not a pro athlete, having never competed professionally or won an Olympic medal, without skiing my life would have been very different.

I grew up in a tiny community in the Catskill Mountains of New York State.  It was once a farm community that ventured into the world of skiing in the early 1960’s and with its proximity to New York City had become a hot spot for families wanting to ski by the 1980’s.  Growing up there in the 70’s there was very little opportunity and little motivation for people to explore the world.  The school was very small and suffocating with no acceptance of individualism. While growing up very few of the local townspeople skied, however the ski area offered low cost after-school ski lessons to the students of the local school district.  At nine years old, I was excited to try skiing, yet I never imagined the positive impact it would have on my life.

Surprisingly, I took to the sport as I never seemed to have the skill to play a sport that involved a ball.  As I grew older all I wanted to do was figure out a way to ski.  When I was zipping down those snow-covered hills the confinements of growing up in a small town faded away.  With a lack of funds for purchasing lift tickets I had to come up with other options.  So, at fifteen I got my working papers and secured a weekend job at the ski area.  The result was that I watched people ski all weekend and maybe managed to get a run or two in after school during the week.  It was not what I had in mind.  Definition of Ski Bum -“Ski Bum –Someone who, because he would rather ski than work, takes a low-paying job at a ski resort so that he can watch people with high-paying jobs ski while he is working.” (Henry Beard & Roy McKie)

Plan B for the following winter - I would become a ski instructor.  Keep in mind that I was not that good of skier and I was painfully shy.  This didn’t stop me though, as I discovered that the ski school actually looked for teenagers to teach young kids to ski, so I gave it a try and that’s where my life as I know it all began.  

I was accepted to the ski school where I taught 3 to 8 year olds to ski.  For the most part, those first few years, I was a babysitter on the snow, but that was okay.  I not only got to ski, but I received incredible ski training and that’s how I became an excellent skier.  Before I knew it I was skipping gym class the last period of the day and hustling onto the slopes.  I won’t discuss how that almost prevented me from graduating high school.

After high school and two years of disinterest at a community college, I decided to spend my winters teaching skiing full time.  Once I had made the decision to teach skiing full time I jumped in head-first.  I wasn’t satisfied with just showing up and teaching a few lessons then ski bumming the winter away.  Yes, I wanted to ski, but I wanted to make some money and excel at what I was doing.  So I got an education in ski teaching.  I did this through reading everything I could find on the subject, attending training clinics, and practicing what I was learning on my students.  Before long I had a following of skiers, of all ages, requesting me for lessons.  In March of 1987 I took the grueling associate certification exam, passed and became a certified PSIA ski instructor.  That year I also was voted Male Ski Instructor of the year by my fellow ski instructors. 

The professional part certainly had a huge impact on shaping my life, but it was the social part that shaped it the most.  As a full time ski employee, meaning being part of the full time staff of the ski school, courtesy patrol or ski patrol, there were no age differences or exclusions, and we all became one big family.  My confidence soared and I exploded out of my high school protective shell I had lived in for so long.  I made friends of all ages and from all walks of life.  During the winter months, I had groups of friends to be a part of a different social event every night of the week.  I was having the time of my life, meeting terrific people and making meaningful friendships.

Professionally I wanted more and my true abilities and talent lied in teaching children.  I was a magnet to them and they couldn’t get enough of me.  So when the opportunity presented itself to take on the responsibility of directing the children’s ski school, I grabbed it.  A few years later I saw another opportunity and jumped at the occasion.  The ski resort had built a new base lodge with a state of the art children’s facility, and it was not only being poorly ran, but viewed as a separate entity from the children’s ski school.  I did some research and formulated a plan to integrate them into a cohesive children’s skiing center, then presented my plan and received the promotion of the Children’s Learning Center Director.  In doing this I designed ski programs for children aged 3 to 13 that are still being offered today.  I also gained valuable job skills for the resume.

There were years I skied every day from Thanksgiving to Mid-April.  Having ski boots on became more normal than sneakers, and I wore the hair off the part of my legs that were in the ski boots.  To this day I have no hair on that part of my legs.  My face would become a deep bronze from the sun and my skiing skills were polished.  On my days off I would find a friend to take day trips to Vermont and in April would plan ski trips with groups of other instructors.  In doing this I skied the Austrian Alps, traveled Austria, Switzerland, and Amsterdam, Holland.  I skied all the major ski areas in Utah and skied in the Rocky Mountains of Colorado.  One May I climbed Tuckerman’s ravine on Mt Washington in New Hampshire just to ski down.  Once I was given the task of skiing all day with a journalist doing an article for Ski Magazine and was quoted in a national magazine article, and all these adventures were shared with some of the most interesting and wonderful mix of people I have ever met.  These experiences would have not existed without skiing.

Chronic Pain an Invisible Disability

In a recent blog about disability being the costume that you wear, I discussed the visibility of a disability.  The costume is an analogy  which people can visibly see when they look  you.  The crutches, wheelchairs, braces or walkers easily tell others you  have a disability. However, there are many disabilities which others cannot see. How many times have you seen someone park in a handicap parking space and he/she appears to have no visible disability?  Many right, I know I have, we need not to be so quick to judge.  Yes, plenty of people are hanging a family members tag in the windshield to run in to the market, however many of those people who appear to not have a disability might be suffering from Chronic Pain one of many invisible disabilities.

Anywhere I go, my crutches tell the world that I have a disability.  At the same time, I suffer an invisible disability that the world cannot see.  They see that I have mobility impairment; the crutches tell them so, what they do not see is my debilitating pain. My chronic pain is my invisible disability and yes, I am using the crutches to help the pain, but that is not what the world sees. They steal a quick look at my legs to try and figure out the reason for the crutches but the reason is not visible.

Wayne Connell, a founder of Invisible Disabilities Association, defines invisible  disability as: “Invisble disability refers to a person’s symptoms, such as extreme fatigue, dizziness, pain, weakness, cognitive impairments, etc. that are sometimes or always debilitating.  These symptoms can occur due to chronic illness, chronic pain, injury, birth disorders, etc. and are not always obvious to the onlooker.”  They have coined the phrase “But you look good”.  It is a phase millions of people know  very well and it can be equally as alienating as wearing the costume.  

Why is it alienating?  When people are not able see your disability they expect things from you that are difficult or impossible.  Human beings for the most part only believe what they can see, so if they cannot see the disability it must not exist. If you use a wheelchair or crutches, it is often easier to receive the help and support that you need.  This is because people can see that you have some limitations. People suffering invisible disabilities find themselves constantly struggling with life unsupported. They become thought of as being lazy, unmotivated or unwilling to get better.  This is because we cannot see that they have a disability and so we forget or simply do not believe it.  Yet, their invisible disability can be equally debilitating as someone  who needs a walking assistive.  

Chronic pain  is caused from a large number of health and mobility problems.  The pain is unresolved, has been present more than twelve months and it is rarely permanently resolved. Living with chronic pain is extremely debilitating and exhausting. Pain can engulf your life and make getting out of bed and everyday tasks difficult. The pain that my leg causes daily has been a constant preoccupation for the past five years. It is also something that most onlookers, friends and family members cannot necessarily see or understand.  The pain never leaves my mind or body.  Throbbing aching pain is what I fall to sleep to each night and mind numbing aching is the very first thing I am aware of upon waking. During the day, the pain can fluctuate anywhere from a nagging ache that slowly eats away at me to where the pain gets so bad that I do not know how I will take another minute.  Most evenings the pain pounds in my ankle and vibrates throughout my body until it rattles my brains.  Only someone experiencing this pain can possibly know what my daily life is like.  

I need the crutches to help relieve the excruciating pain which walking causes and yes every day someone runs ahead to open the door or someone lets me go first.  I have become very independent and mobile. This is how I prefer it; but there are days I struggle with every task, not because of the crutches, but the pain that has worn me down. Every task becomes a frustrating chore.  It’s those times I need help and support which I don’t always recieve.  My independent capabilities in my crutch mobility often backfire as it is not help with walking or opening the door that I need.  It is an understanding that I am in pain and living with pain is debilitating, and paralyzing.  Another reason people don’t understand this disability is because they haven’t experienced pain, of which modern medical science hasn’t found a solution.  

A few years before my ankle injury I was cutting some boards with a power saw.  A splinter of wood flew up and lodged in my eye.  The pain was excruciating, I went to the ER and they gave me some pain killers to get me through a miserable night.  The next day I went to an ophthalmologist.  Within minutes, she pulled out the splinter of wood  and I experienced instant relief. Two years ago, I woke up with serve pain in my lower back.  I honestly thought I was going to die.  Once again, I went to the ER got some pain meds and an hour or two later I passed a kidney stone and the pain was gone.  Both of these  situations were massively painful. The difference is that I was able to get relief and resolve the situation.  This is what we are used to and it makes it so unfathomable for someone not living with chronic pain to understand.  Even if you break a leg, it is very painful, challenging to deal with it, but it is short term and then it becomes an unpleasant memory. The leg heals, the pain disappears and you move on with normal life.

Pain has become associated as being something for what we get medicines or surgery  and it goes away, so how could humans possibly understand someone could live in the pain like many of us do.  If we did, why wouldn’t we just go get something for the pain?  Every day I hear: “Isn’t there a pain medication?  Did you try …?  I know someone who tried… now they are cured.  Do you really need the crutches?  I would find a different doctor?  I can’t believe there isn’t something that can be done.”  Some told me to drink a glass of vinegar before bed or swim in the Red Sea and the pain would be gone. Everyone has the magic solution, what they don’t have is the ability to understand and I don’t blame them, I doubt I had the ability to understand before experiencing chronic pain. 

Living with chronic pain is not easy and it will never be. I  believe that until someone has lived with chronic pain it is impossible for  him/her to understand what it is like.  People who have experienced pain with injury and short-term illness will tell you they understand, but until the pain last for more than a few months, permanently alters their life and becomes unresolvable they lack the ability to apprehend.  Constantly telling, asking for assistance or reminding people of pain just alienates us and pegs us as being complainers. Therefore I have learned ways to cope, live my life to the fullest and keep my pain to myself as much as possible. 

For those of us tormented by chronic pain daily we are “not looking for sympathy but just some understanding.”  The understanding that living with chronic pain is difficult, exhausting and we are doing our best.  But sometimes we need help, a shoulder to cry on and most importantly acknowledgment that we are suffering.  Just because someone doesn’t exhibit visual symptoms of a disability doesn’t mean they are not struggling to accomplish simple daily tasks. 

A quote from Stephen Hawking sums up very nicely about how I now live my life. "It is a waste of time to be angry about my disability. One has to get on with life and I haven't done badly. People won't have time for you if you are always angry or complaining."

Give The Gift of Mobility

The picture above is worth a thousand words.  Look at the condition of those crutches these amputees are using.  Anyone who has ever had to use a pair of crutches even temporarily knows how difficult and exhausting it can be to get around on them, and that is with a functional pair of crutches in good repair.  My fellow full-time crutch users, you know how essential a functional pair of crutches are to the quality and productivity of your life.  Trying to ambulate on a pair of crutches with no tips and rapidly deteriorating shafts would not only be extremely difficult, but painful and dangerous too.  A good functional pair of crutches should not be a want; it is a need to anyone who is suffering a disability in which a pair of crutches would allow them mobility. Yet in the West African country of Sierra Leone, a staggering number of amputees and polio victims are reduced to crawling on the ground to get from place to place and a pair of crutches is an unattainable luxury.   

Sierra Leone is home to 20% of the world’s amputees and tens of thousands of polio victims. Just to reiterate how high this percentage is, the World Health Organization estimates that 10% of the world’s population lives with some form of disability.  The high percentage of amputees in Sierra Leone is the result of a decade of civil war in which a trademark of rebel groups was to hack off the limbs of civilians.  Living in severe poverty and without any government assistance these people have been left helpless, without something as basic as a pair of crutches to simply move their body from one place to another.  Last year The Piece Project, a non-profit organization based in California, distributed 10,000 pairs of crutches to many of these people, providing them with mobility, dignity and equality.  While there are still many more people in need of crutches in Sierra Leone, the people using the 10,000 pairs of crutches that were distributed are now in desperate need of crutch tip replacements.  While The Peace Project continues to distribute the much needed crutches, an ongoing effort is needed to keep these crutches functional. 

Typical adjustable crutches have a short lifespan when being used full-time daily.  The basic tips on a pair of typical crutches last a month or two with full-time use.  The rubber tips of the crutch users of Sierra Leone are long gone and the bottoms of the crutch shafts are deteriorating without the protection of tips.  These crutches are quickly becoming unusable and the crutch users of Sierra Leone will once again lose their mobility. 

Not having crutch tips means:

Loss of traction and any shock absorption

Higher risk of falling, causing other injury 

Pain and structural damage to hands and shoulders

Rapid degradation of the much needed crutches, causing crutches to become unusable

These people do not have access to new crutches, tips or any other parts to repair and keep their crutches safe and functional.  Imagine being given a gift of mobility only to have it taken from you just a few months later.  Thomas Fetterman, a crutch user and inventor of new crutch tip technology, has teamed up with The Peace Project to help solve this problem.  He has created The Peace Tip Project, which will be an effort to keep the crutch users of Sierra Leone upright and mobile by providing them with crutch tips and other necessary crutch repairs.  Thomas Fetterman has developed a long-lasting rubber crutch tip (peace tip) to replace the worn-out crutch tips.  These high quality crutch tips will go a long way to helping the crutch users of Sierra Leone.  To make The Peace Tip Project happen funds are needed not only for the crutch tips, but also to find a way to distribute these crutch tips to all the crutch users in Sierra Leone.  

As a full-time crutch user, I know the immense value crutches provide to my life and I can’t imagine what it would be like not to have access to functional crutches and all the parts that routinely need replacing.  So, I have taken on the initiative of assisting Mr. Fetterman and The Piece Project to find ways to fund the Peace Tips.  

My first effort is in asking you not only to make a donation to The Peace Tip Project, but also to please share this article through email, Facebook, Twitter and any other social media you might use.  The more people this message reaches, the more donations will be possible.  With your help Peace Tips will be distributed free to developing nations where crutch tips of any quality are almost nonexistent.

Your donation of  Having functional crutches will give equality, dignity and mobility to the people of Sierra Leone who are unable to walk without a pair of crutches.

To make a tax deductible donation, please go to: The Peace Project http://www.thepeaceproject.com/peace-tips

Finding the Correct Mindset/Attitude

“The only disability in life is a bad attitude.” - Scott Hamilton

These are indeed excellent words to live by.  A poor attitude will disable you and isolate you from life.  Adapting a positive attitude is essential, but not always easy when learning to live with disability.  Having a positive attitude can be acquired, but it is not necessarily something you wake up with one morning.  The process of accepting your physical limitations and living with a disability involves a change in your mindset.   

The definition of mindset: A fixed mental attitude or disposition that predetermines a person's responses to and interpretations of situations.  The mindset you need when dealing with physical limitations is to embrace your circumstances (disability).  Accepting you are disabled doesn’t mean you are not capable.  It is an understanding and acceptance that you have to make changes in the way you do things.  Without the acceptance of the reality of your situation, you won’t achieve the attitude necessary to have a fulfilled life.  

Over the past five years, I have had my bones in my left ankle sliced, diced and screwed together six times.  These surgeries all involved massive pain, leg casts, and many months of full dependence on crutches.  I was left with debilitating pain and a permanent disability.  I could no longer do the active things I had enjoyed and no longer continue a career I was passionate about.  The one thing that allowed me to get through all of this was my choice to maintain the right mindset, my mental attitude towards each situation along my journey.

From the start, having the right attitude was how I viewed needing to be dependent on crutches.  I went from being an active person, who did mostly everything standing, to needing a pair of crutches just to get to the bathroom.  This was a daunting experience and in the beginning there were times I didn’t think I could tolerate needing crutches another day.  The crutches were not easy to acclimate to, but it was my mindset that kept me going.  I quickly adapted the mindset that the crutches were not the enemy, but were rather what made it possible to ambulate and remain a productive person.  It was the change in my perception of crutches as miserable torture devices to being helpful tools that made the difference and kept my attitude positive.

Later, after going through six surgeries and years of pain to have no resolve, I was left lost and feeling helpless.  Maintaining a positive attitude seemed unattainable.  I would have never got through six surgeries, years of constant pain, using crutches and losing my career if I hadn’t retained a good attitude.  It also took an immense amount of positive attitude to keep going and do the things I had continued to do.  At that point getting out of bed each day, taking care of myself and being a parent required a positive attitude.  However, this was not enough; my mindset was one of denial of my disability and feeling sorry for myself. 

My wife would say, “You need to start thinking like a disabled person.”  At the time I didn’t understand what she meant.  To me thinking like a disabled person would be giving in and having a negative attitude.  I thought the way to maintain a good attitude was to continue to live as if nothing had changed.  The problem was that my physical capabilities had changed and they were preventing me from living the way I once did.  I was at a road block and unable to move forward with my life.  I acted as if I was not disabled, and in the process I was frustrating myself trying to do things that were simply impossible, such as walking without the assistance of crutches.  I had the wrong mindset about being disabled; I thought that without the full use of my leg I would live a sedentary life and I wanted the active life I once had back.  I was in search of someone to help me, give me a break or make my life better.  This mindset was preventing me from healing emotionally and achieving the life I wanted.   

Revisiting the many stories of people with much greater disabilities then mine, I realized that accepting my disability didn’t mean I was incapable.   I changed my mindset from being an able-bodied person to one with limitations, just as an alcoholic has to realize that they have a drinking problem before they can become sober.  I had spent four years living from surgery to surgery in search of a cure.  There was no cure; my leg was shot, and at that point there was nothing a surgeon could do for me.  So I made the choice to embrace my disability (I prefer the politically incorrect term of “my handicap”) and adapt my life around it.  I mourned the way I once had done things and began finding new ways of accomplishing tasks.  I readapted my perception of the crutches being helpful tools as opposed to entrapments, and most importantly I was able to take back control of my life.  It was then that I began to view life positively and life shined back at me.  

I now live happily and maintain a positive attitude towards my circumstances.  This is because my mindset is one of accepting my disability and its limitations.  Instead of being angry about what I cannot do, I focus on what I can do, and I’m always open to trying new things.  My crutches enable me to participate in an active life, I returned to skiing using outriggers, and I found a new career.  These things would not have been attainable without the mindset of accepting my disability; therefore I needed to regroup and reassess how I accomplish things.  I have accepted that I can no longer achieve in the way I once did, but I challenge myself in different ways, still succeeding in great things.  The more I accomplish, the more I strive for and the more success I enjoy.  Thanks to my SideStix and the snowshoe attachments for them I am looking forward to trying some snowshoeing this winter.  Who would have ever though that someone could snowshoe on crutches!  Just as with skiing last winter, I won’t necessarily be trekking the glaciers, but I will embrace the challenge and enjoy being out on the snow.

When you cannot change your physical limitations or circumstances, embrace your disability. This new mindset will open a world of new possibilities.  

“Your living is determined not so much by what life brings to you as by the attitude you bring to life; not so much by what happens to you as by the way your mind looks at what happens.” - Kahlil Gibran

Read My 8 Steps to Rebuilding Your Life with a Disability for more details on how I achieved the correct mindset.