Blind Travel

Planning, logistics and networking.  These are the three buzz words on every person with vision impairments’ brains.   Gone are spontaneity.  Gone forever from your lips is the phrase, “I’ll stop by.”  I can’t ‘run to the store to pick-up bananas’ without assistance.  Relinquished from your ‘Type A’ personality is the control over your own schedule, and doing ‘what you want; when you want to.”  But it’s not all bad. It just takes a village.

7 years ago, on December 11th, I drove a car for the last time.  It was a day like any other monday, and I turned the key to my beautiful brand new convertible, and made my 30 minute commute to my job as the Fine Wine Director for Stew Leonard’s in Norwalk CT.   I pulled into our parking lot, and stared straight out the windshield.  Something was wrong.  I turned my head to grab my lunch on the passenger’s seat, and suddenly the world began a terrible tailspin, a blur of light, color and bending, wavy lines.

I called our Administrative Assistant, whom I knew arrived before me from my car.  “Kerry, I can’t get up.  I’m outside in the parking lot and I need your help.”  “Yes, I can see you out there.  What are you doing?  It’s freezing, get inside.” “I can’t.  My legs won’t work.” “What do you mean, your legs won’t work?”  “I started chemo today.”  “Oh, I’ll be right out.  Hold tight.”

Hours passed and my dizziness and vertigo went from bad to worse.  December in the wine retail business, at CT’s largest wine store meant non-stop 14 hour days, with no sitting, no bathroom breaks and limited opportunities to eat.  There I sat, draped on my office chair, unable to move or turn my eyes or head without throwing up. I cried uncle, and the security guard half-carried me to his truck and took me back to my couch in Fairfield, where I remained for three months.

For three months I cried, was terribly ill, and stared hopelessly out the window at my shiny black hard-top convertible, with its handsome white leather seats and brilliant chrome trim and rims.  It taunted me from my new home, the sofa, where I needed to sleep, eat and attempt to check in with work between vomiting and attempting to lift my head from the pillow.  I lusted for the feel of the burled wood steering wheel between my hands.  The thought of running to the pharmacy to pick up yet another anti-nausea medication made me salivate with anticipation.  But it was not to be.

I had officially crossed the threshold of being ‘legally blind’, which means that you trade in your driver’s license for a social security disability card, a discount bus and train pass, a handicap placard for the people that will now be carting you to doctor’s appointments, you get a free snazzy white cane to attempt to walk from point a to point B, and a free fishing license.  Yup!  Apparently in CT you get your own laminated fishing license to spend your days now trying to catch your own dinner.  Sounded like fun.

It took me about 3 months and two car-pedestrian accidents before I realized that I was much better suited to a dog than a cane.  While the cane was great at telling you WHAT it was you were about to run into, it didn’t do a great job with silent hybrid vehicles that seemed to have a way of getting in my way.  Enter Guiding Eyes Elvis, the first and best good decision I made as someone living with vision loss.

After a lot of false starts and being stranded living in Suburbia, I realized that there really is an art to traveling while disabled.  I lived in a bad community for a visually impaired person.  The trains were sporadic, the busses more so, and the sidewalks were often uncleared in the winter-time, forcing my guide dog to navigate me in the street, playing chicken against distracted drivers in poorly lit areas at night.  When I finally reached the bus stop, often there was no access to the street curb due to huge mounds of snow plowed against the sidewalk, leaving Elvis and I unable to board our bus.  If we didn’t stand at the EXACT bus-stop sign, drivers would cruise right past us, spraying us head to toe with muddy snow and salt, thinking that I didn’t “Look” blind, and must just be some lady walking my dog.  In a harness.

After being left by the even more unreliable handicap transit in a dark office park with no cell phone service one night in Trumbull, freezing in the cold, I made the decision that it was no longer safe for me to live in an area where these horrors kept happening.  I’m not a city girl, having grown up on a horse farm, so a large town with good walking access and transit would be the goal.  So I moved to Greenwich.

After getting my guide dog, moving to Greenwich was the SECOND good decision I made for myself.  While it’s not financially accessible for someone living on fixed social security disability pay, it was ideally set up for someone living with vision loss.  So, at the ripe age of 35, I would get my first roommate.  The streets have cross-walk lights, there’s grocery, pharmacy and retail access, a beautiful YMCA with a pool, and a huge infrastructure for pubic transit thanks to the wealth of the hedge fund businesses that reside here.  I found a new home.

I’m now a visually impaired Paratriathlete, racing and training with Team USA for the Paralympics in Rio 2016.  My life is dramatically different, and I’ve become savvy at making all the moving parts of my busy life work, between selling wine, working out, public speaking, and traveling to races all over the world.  I make it work.  How?  PLANNING, NETWORKING AND LOGISTIC management.

Prior to my vision loss, I had the luxury of being late for appointments and meetings.  Now, my life is relegated to public transit or the kindness of my many friends and Facebook aquaintances who help ‘Team Dixon’ get to doctor’s appointments more than 40 miles away in New Haven, Danbury, Boston, and all the spots that public or handicap transit cannot get me to.  The countless emergency eye surgeries and exams on the weekends have all been made possible due to my network of incredibly kind, loving and generous men and women.

For surgery, I’m not allowed to take public transit, and someone has to be arranged to assist me with my dog and cooking for a few days, as I’m usually too medicated to do normal functions, and not allowed to bend over while my eyes are bandaged.  16 surgeries in 5 years, and it has taken at least a dozen people to help me with transit to follow-up appointments and procedures.

When traveling for triathlon and cycling races, a lot goes into planning.  Glaucoma and Uveitis are nasty diseases, and the thought of losing my $800 per month medications in checked luggage frightens the Dickens out of me. So, carry-on luggage becomes an art.  I need someone to help me find my hotel when I land, and plan how to get to my race or watch Elvis while I run with my guide. My guide dog needs to remain on his strict diet of Iams’ Lamb and rice, each day at 6 am and 6pm.  These need to be packed in individual baggies, with extra in case of flight cancellations.  When traveling abroad, I need to call the hotel and ship the food and confirm its arrival in advance in order to avoid heavy baggage fees for more extensive stays. Plus, there’s the paperwork with Elvis.  He needs a health certificate and exam within ten days of travel, adding a visit to Westchester to Guiding Eyes on my ‘to-do’ list.

Finally, I have a GIANT bike.  My tandem racing bike (borrowed by a generous team Dixon supporter) is 8 feet long, weighing 36 pounds on its own and about 55 with the bike case it flies in.  I’ve been restricted to getting to the airport via friends and family with SuVs and Mini-vans due to the cumbersome size, as regular shuttles simply won’t take me.  When I GET to the airport, someone has to fetch a gate agent to come out and assist me with luggage, bike and dog as I drag my triathlon gear onto the plane.  Our coaches ask that we carry on all race essentials- uniform, helmet, shoes and pedals, in case of luggage loss.  I basically look like a hiker ready for Kilimanjaro.

Elvis is easy.  I feed him as normal on the day of our flight, and do one last potty-break before going through security.  I try to get direct flights when I can, but when I have a layover, I prefer it be at least two hours so he gets a chance to go out in between flights.  He travels beautifully, and gets lots of admiration from flight attendants and other travelers as he sleeps his way through a 5 hour flight with ease.

Finally, each Sunday night, I look at my calendar, check the bus and train schedule, and set reminders on my phone for each bus or train I need to take, allowing time to walk to the station and stopping for coffee.  The alerts keep me on track, and force me to stay organized with my time.  I look at my training schedule and hit facebook, email and text to line up guides for my runs, bike rides on the tandem, and open water swims at the beach.  My roster of guides builds each month, and I’m delighted that I now know more than 15 fantastic local guides willing to donate their precious time to help me achieve my athletic goals.

Monday morning, I try to fill in the gaps in transit with lining up rides to dr appointments by calling or texting friends and relatives, and using handicap transit as my last resort due to its unreliable nature.  Sometimes, you get what you pay for.  And lastly, when the plan all goes out the window, and I forget my phone on the dresser at home?  It’s an expensive taxi ride home to get it.  It’s like running a full-time ‘driving Miss Amy’ business, as my family likes to call it.

I’m blessed that I have a charge account with the local taxi service and wince each month, especially during the cold winter months, as I look at my statement.  I use it so much that they send me a box of chocolate each Christmas.  Apparently, I need to walk more.  Even with networking, facebook, and planning, sometimes you’ve just GOT to go get bananas at the store at 9pm.  Hey, I may be a blind athlete and sommelier, but I AM human.

Thank you to my friends and family for making my days a blessing and all of this success possible.  LOVE and Gratitude.

Paralympic Cycling Camp Part 2

“Mike, your shorts are inside-out.  The bike chamois goes on the INSIDE,” Jimmy giggled aloud. The group gathered in the hallway of the Olympic training center dorms burst out into uncontrolled howls of laughter.  “Well, why didn’t you tell me sooner?  You know I’m BLIND, don’t you?” Mike started to crack up himself.  One of the other cyclists chimed in, “Come on, Mike, you can’t FEEL that it’s wrong? Chamois; INSIDE.”

We stifled our giggles as the coach began his morning speech.  “Riders; eyes and ears!” The crowded hallway fell silent.  “Your bikes are loaded into the vans.  We are going to drive out to the desert and ride 3 or 4 loops of tomorrow’s Time Trial Course.   Be sure to ask lots of questions of the more experienced tandem teams, and note all the turns, lines, and opportunities to make up some speed.  Any questions?  Let’s roll.” And with that, ten Para Cycling teams made their way out into the Colorado cool spring air.  Through my tiny pinhole of remaining eyesight, I could see the sun was just starting to strike the tip of Pike’s Peak, located another 8,000 feet above the Olympic Training Center of Colorado Springs.

Each team was made up of a sighted person piloting the front of the tandem bike, where they were left in charge of steering, braking, and shifting this elaborate racing bike built for two people.   The second half of the team was a blind “stoker’, referring to the blind or visually impaired individual who helped power or ‘stoke’ the bike from the rear position.  All of the pilots were volunteers with extensive cycling experience who had been recruited to this Para Cycling Development Camp in preparation for the upcoming Paralympics in Rio.  The stokers, myself included, had been recruited from both military and civilian backgrounds as people who had shown an aptitude for tandem cycling and might have some interest in trying a racing career.  It was an incredible honor to be surrounded by such a group.

Riding in the van, I because I have a tiny bit of vision left, I took the time to describe to my fellow blind stokers the terrain as we neared the course.  “The mountains are to our West, covered in snow at the top, and the view around us is nothing but flat plains as far as the eye can see, dotted with cattle and the occasional new housing development and the Air Force Base, surrounded by high wire fencing.”  We began to drive on the course, and the coaches began describing the turns to the riders without sight.  “Here, you have a 110 degree turn, so take advantage of the shoulder, and you can afford to stay tight there.” Although the blind cyclists wouldn’t be in charge of steering the bike on any of the turns, it instilled confidence in each of us to know what was coming at every bend in the road, and how to stay in sync with our pilots to maintain the best aerodynamic position.

The van finally pulled over on a dead end street next to a tiny grouping of new homes.  Our bikes were already being unloaded from the cargo van by our amazing volunteer mechanic, Dan.  After making some last minute adjustments to our seat, my pilot Lindsey and I took our loaner CoMotion bike, “Palomino” out for a test ride.  The air was frigid.  Barely 45 degrees, and the flat plain made the wind chill absolutely biting.  Where was the 70 degree weather of the day before?  I prayed for the sun to hit this street, and soon.  Over my bike shorts I had thermal tights, two long sleeve shirts, a wind jacket, and fuzzy gloves. I looked more prepared for skiing than going for a bike ride.

After three days of being together 24/7 and a good ten hours of time in the saddle, my pilot Lindsey and I were starting to really mesh as a team.  We chatted like old friends, and had shortened our on-bike communications to mono-syllabic words to convey exactly what we either needed or were about to do.  “Drinking!” I would pronounce before I carefully and smoothly leaned forward to grab my water bottle. “Shifting,” Lindsey would announce before an impending hill climb.  “Right,” should would shout before a turn, or “bump!” before a giant pothole bruised my seat-bones.  We became fluid, smooth and closer and closer to that singular unit that we knew we could achieve with simply more time spent together on the bike.

On our first climb of the 4 loop, rectangular 5km race course, our friend and mentor Greg Miller and his blind stoker pulled up alongside.  With his Tennessee southern drawl, Greg explained the necessary strategy to ride the course most efficiently and safely.  “You’ve just got to pick this line, drifting from out to in on these turns and push hard on this first uphill.  With the tailwind, you should be hitting no less than 20mph here.” Lindsey and I listened intently as we softly pedaled alongside for our lesson.

The course turned right up a steeper incline, and he advised that we maintain this speed by standing up on the bike for a short burst.  Lindsey and I both sighed as we hit the long gradual downhill.  “Hey Greg this seems like a great spot to catch our breath after that hill!” I offered.  “No way, man, “ said Greg, rather emphatically.  “This is where you make up some speed.  USE this hill to get going on the course.  There is no rest in bike racing, young lady.”  Both Lindsey and I couldn’t hide our disappointment, as it must have been written all over our faces. “Hey, ladies.  If you want to make the time, you’re going to have to ride the shit out of this.”  And with that, he pedaled forcefully ahead.

We finished our third loop, and were about to head out for one more, when my fingers finally went numb.  Thankfully, Lindsey felt the same way, so we decided that we’d had enough of riding the windy, chilly course, and would go warm up in the waiting vans.  Several other riders must have concurred, as there was a pretty large group gathered back on the side street as we arrived.  We all chatted nervously, discussing strategy and info on the course, hoping that someone might offer new insight.

This time trial meant a lot to many of us.  The USA Paracycling team has written standards in order to achieve recognition and funding for budding athletes.  There is a military standard, an emerging standard, a talent pool standard, and finally a national standard, with the latter being the fastest.  If we could hit the talent pool time standard after only 3 days of training as a team, Lindsey and I could get some much needed financial assistance and coaching to go further in the sport.  After handing our ‘Palomino’ off to Dan for transport, we high-fived each other.  “We’ve got this” we both said at once.  “Jinx!”

If you want to help support this team, please click here:

https://usaba.myetap.org/fundraiser/athletedevelopmentaccounts/individual.do?etapCacheBuster=1399865747593&participationRef=849.0.453599289&shareMedium=label.facebook

Being an expert patient

I’m three weeks away from speaking to a ballroom full of optometrists and ophthalmologists about patient care and education in Antigua.  I can’t believe that sentence just came out of my mouth!  As surreal as this year has been, I have had the opportunity this week during my 15th eye surgical recovery to ponder what I might say to these young and eager physicians about how they treat their patients.

I am a very lucky patient.  One might not say that given I’ve had 15 eye surgeries in less than 5 years, countless in-office injections and procedures, and nearly two years of chemotherapy to treat my rare eye disease.  But I am lucky.  I have these as options, where many do not.  I have a 5 year background as a student working towards her doctorate in pharmaceuticals at the University of Connecticut.  I lived, ate and breathed the chemistry world for 5 years of my life.  Never would I have imagined how important a role that would play in my own care and disease.  I also happen to live in the Northeast of the United States, home to 3 of the top Uveitis (Inflammatory Eye Disease) Specialists in the world, AND the world’s most renowned Glaucoma specialist, less than a 45 minute drive away.  Lucky? You BET I am!

You don’t HAVE to have a PharmD or PhD to know how to advocate for yourself when dealing with a serious illness however.  You just have to be your own inner, pushy self.  That person that you hide from the world who sits inside of you and is constantly asking, “what now?  What IF?  How do I do____? Is this drug better?  Will it make me sick? What is the next step if this doesn’t work?  What are the statistics on this treatment?  At what stage is my disease?  Are there other people nearby who have this?  How can I talk to them?”  You NEED to address all of those nagging questions in your head.  Being a shy, fearful, victimized patient serves NO ONE well.  In fact, you are doing yourself harm each time you don’t ASK a question.

Doctors are incredibly busy.  Often you’ll get to your appointment on time to see a specialist and be ‘graced’ with their presence’ after a nearly 90 minute wait.  Under NO circumstances should you feel RUSHED.  Make a list of questions in advance, and be sure to ask alternatives/options to the treatment they are suggesting and WHY they are choosing NOT to go with those, side effects, and next steps, and how YOU personally can improve the outcome through either exercise or diet or rest, whichever they recommend most.

Going to a specialist can be intimidating.  Sitting across from an ‘expert’ about your disease is frightening.  It can feel like they have all the cards in their hand, but in FACT, it is quite the opposite.  Their reputation is based on how successful they are at treating people just like you and me.  If they aren’t successful in managing or defeating your disease, it is a personal loss for them.  It is YOUR job to ‘challenge them’ to step their game up on your behalf.  Every decision is ultimately yours, no matter HOW ‘matter of fact’ they sound or determined to pursue a certain course of treatment, it is your JOB to question the WHY at each and every turn.  Make them accountable, and don’t be afraid to interject a little PERSONAL information about yourself.

Making it personal is important.  Before I became a twice a week patient at the Yale Eye Center, none of my doctors understood that some of the treatments they gave me affected my ability to make a living for myself.  I am a sommelier.  My NOSE and my PALATE are my entire life and career.  Without them, I cannot do my job tasting and assessing wines.  When they put me on a particular chemotherapy drug that made everything taste like metal, I was beyond furious.  But I hadn’t asked the right questions, and hadn’t TOLD THEM what it was I DO for a living.  My fault.

By giving my doctors a deadline this time around and explaining my NEED to go back to training for triathlons, I pushed him to find the more permanent solution to the endless cycle of injections and procedures he was making me go through for the past 5 months.  Had I not explained the NEED for me to get back on the bike and running and swimming again asap for a National Championship Triathlon race this spring, we’d still be spinning our wheels.  Sometimes they need to understand that there’s a PERSON with a LIFE in there, and not a guinea pig.

I’ve had docs on both sides of the spectrum due to the rarity of my disease.  Because there are literally NO OTHER PATIENTS in the country with my diagnosis and combinations of three rare eye conditions, I am VERY VERY interesting to all the big-wig docs who want to make a name for themselves by treating me.  This affords me the ability to pick and choose from the best of the best doctors and have MANY different opinions from the top glaucoma and uveitis researchers in the world.  My case has been presented at conferences all over the United States, the UK and France to the best and the brightest.  They are clamoring for the opportunity to get a hold of my chart and ‘fix’ me.  Because of this rarity, I am still able to see out of 1% of my eye, and that is no miracle.  That was the hard work of the world’s best working on my behalf and pulling out every strange and rare surgery and implant and medication.

The researcher types are VERy clinical and have little personality, as they’re used to being in a laboratory all day and not seeing an actual patient.  These guys need constant reminders that you’re not a rat and that there’s a person behind the exam chair.  On the other end of the spectrum, I’ve had residents and fellows at teaching hospitals give me their cell phone number and show extreme concern for my mental and physical well being when they can tell that I’m becoming weary of all the poking and prodding and pain and need the ability to reach out late at night when I’m feeling sick and overwhelmed with treatments.

When you are faced with a difficult diagnosis, google can be both your best friend and worst enemy.  Balancing the dizzying array of info on the internet and the advice of your doctor can be a full time job.  Make it so.  But also remember that the internet reports the WORST case scenario of each and every drug and treatment for liability purposes.  You will not necessarily fall into that category.  However, DO take note of something amiss or odd during your treatment, even if it’s seemingly insignificant, or doesn’t ‘fit’ with the known side effects.  The first chemo drug I was given was supposed to have MINIMAL side effects, and would be very well tolerated by most patients.  I was unable to walk due to severe vertigo after taking my very first dose.  This was a side effect that had NOT been reported to the FDA and my doctors were baffled for 6 weeks until they finally took me off of it and I was able to finally stand up.

Remember that everyone responds differently to treatments and medications and that no two patients or outcomes are alike.  I belong to 4 different eye disease support groups for my various conditions, and have to remember that in every country the protocols and drgus are different and that each of us heals differently also.  Just because my friend Lisa had a disastrous trabeculectomy, doesn’t mean that I too am going to be affected the same way.  But DO take note of these other outcomes to PREPARE yourself for this possibility.  Find a support group that is focused on treatments and sharing outcomes.  Being part of a group will make your disease less isolating, and you may find treatments, doctors, and drugs that you hadn’t known about otherwise.  Support groups can be useful tools in healing both physically and mentally.  However, DO remember, that these folks are PATIENTS just like you, and to take their opinions with a grain of salt.  They’re looking for answers just like you.

My motto is ‘expect the worst and hope for the best’.  This sounds a little dismal, but given the amount of setbacks I’ve had with this disease, I have found that it is MUCH more fun to be pleasantly surprised by a positive outcome than to be shocked and disappointed when it fails.  I KNOW the odds are not in my favor, so I consider it a ‘bonus’ when things go well, rather than expect it.  The statistics at this point don’t SUPPORT a positive outcome.  This doesn’t mean I don’t think positively about my disease, I DO.  I am just very honest with myself that no one has beat this disease yet, so every day I have with sight is a gift.

So I want you to march into that doctor’s office next time, whether it’s for you, your spouse, your child, or your parent, and OWN IT.  The doctors work for YOU.  You are PAYING them for a service.  You are NOT a bother.  You are their life’s ambition and work.  Write DOWN everything.  If you are distracted or have bad handwriting, ask if you can record the visit.  There is a voice memo option on all iPhones.  USE IT.  Do your research on drugs, the disease and treatments and outcomes and statistics BEFORE you get to the office.  Bring the research with you.  Highlight things you don’t understand.  If you feel rushed, spend some time with the nurse going over some of it before you see the doctor.  Remember.  They work for YOU.  Become an expert patient.  You will NEVER feel helpless again.

Facing Guide Dog Maturity and Retirement

I’m at the doctor’s office today (as I am usually two or more days per week managing my rare eye disease) and my primary care doctor, (whom I see but twice a year) remarks about my dozing Labrador Guide Dog, “wow, he certainly is getting white, isn’t he?  I remember when you first got him, and what a silly, friendly, active dog he was.  Now look at him!  He didn’t even wake up when I entered the room!”  I sighed deeply, and looked down at the white-faced ‘middle-aged’ dog that is my constant companion.  “I know. I know. Time does fly, doesn’t it?”

I spoke at an elementary school last week about guide dogs and how they work and are trained and how they help the blind and visually impaired.  One of the children always asks at some point, “What happens when he’s too old to work?” Well, typically a guide dog starts their career at the age of two when they are placed with the blind to start their work as a guide.  Ideally, the dog can work as long as possible, some even up to the age of 11 depending upon the individual dog.  Some can retire as young as the age of 6, which while not ideal, certainly can happen.

The factors that determine a dog’s retirement age can range from problems with their work, if they begin to make mistakes, or perhaps develop issues after being attacked by other dogs, or an accident involving doors being accidentally closed on them or any variety of training issues that may not be overcome through work and patience.  Sometimes the dog’s pace becomes too slow for the person being guided and the dog can no longer successfully keep up the pace.  And other times, as with any dog, health issues can arise that require the dog enjoy some well-deserved rest and removing the stress of work from their lives.

Recently I have known four amazing working guides that have retired between the ages of 6 and 9, and it rocked me to my core.  Elvis turns 7 in less than a week, and we will have been a team for 5 years this March 8th.  I have NOT LEFT THE HOUSE without this dog more than a dozen times in 5 years.  The ONLY time Elvis stays at home is if I’m running or open water swim practicing with a friend at the beach, where they are acting as my ‘sighted guide’ and we are tethered together wrist to wrist.  The only other time Elvis stays at home alone is if I decide to go sunbathing at the beach with my friends, and it’s simply too hot for him to sit under an umbrella at a public beach.  That’s IT.

Imagine spending 24/7 with someone.  Never going away on vacation from them, never ‘staying over at a friend or relatives’ house’ without them.  You are NEVER apart.  Now imagine that person is TIED PHYSICALLY to your body for a good portion of every single day, and they know your EVERY single movement by heart.  They follow the direction of your fingers when you point.  They follow your eyes when you stare.  They hang on your EVERY word, even when you’re not addressing them, just waiting for the opportunity to assist you in some small way.  Imagine someone that their ENTIRE LIFE AND HAPPINESS depends upon your happiness and safety 24/7 for their whole existence.  I can’t imagine anything more stressful and selfless all at once.

So I am sitting here looking at my white-faced nearly seven-year old best friend, confidante, caretaker, protector and extension of my own body, wondering, “When, buddy?  When will it be your time?  In 6 months?  Will we have years?  Will you TELL me when you’re ready to retire?  Will I be able to let go of that harness handle for the last time?  How can I do that?  Will you be happy hanging all day with my mom in your retirement?  Will it be ‘enough’ for you?

I’m VERY blessed, because I KNOW where he’s going when he retires.  A guide dog’s retirement home depends upon many factors.  Ultimately it’s the decision of the handler of the dog to determine when he’s ready to hang up his harness for the last time, however, if a guide dog school determines that either the handler’s or the dog’s safety or health is in any way compromised, they will step in and help make that tough decision.  If the blind person has family living with them that can care for the dog in its elderly years, then the dog may be able to stay with the owner.  If the person lives alone, or they feel it may be too emotionally stressful for the dog to be left alone each day while the handler goes out for many hours with a NEW guide dog to work, etc, then the dog will be placed for adoption or a family member or friend can take the dog.  With most guide dog schools, the family or person that raised them as a puppy up to 18 months before formal training is offered the dog in its golden years.  If they choose not to take the dog (most DO want them back), then there are MANY MANY folks looking to adopt a well-trained friendly companion.

I watched my friends recently have to hang up that harness handle, and offered support and love during their transition.  Two dogs were medically retired due to life-threatening, sudden-onset cancers, and two were simply ‘done’ with working and one day decided they were no longer as interested in getting their uniform on to leave the house.  It gave me pause and made me realize that every moment I spend with Elvis is precious, and as I throw the ball and he becomes more and more tired, sooner and sooner with each game of fetch we play, I realize that he is simply ageing faster than I’m prepared to face.  While he still enthusiastically wags to get his harness on each day, and guides me with skill, speed, and precision like a finely tuned sports car, I do ‘feel’ those days after a vigorous swim in the ocean, or a tough game of fetch in deep snow that he is indeed slowing down.

His naps have become longer and deeper, like today at my doctor’s office, and the white around his muzzle marks the passing of these five incredible years.  I took the elevator down yesterday to my laundry room in the basement of my building, happily talking to Elvis the whole way, who had stuffed TWO tennis balls in his mouth.  I was picking on him for his choice, and laughing out loud, not caring who could hear us.  I can’t imagine if he wasn’t there to share my day with both verbally and physically.  I would have no one to share all of those ‘little moments’ that make up each day for me.

I shook my head and got choked up when I realized that had I chosen to use a CANE these past five years, and had NOT received the greatest gift that is Elvis from Guiding Eyes for the Blind, how SAD and lonely of a blind person I think I would be.  I know for SURE that I wouldn’t have had the strength to endure 15 painful eye surgeries in 4 years without him at every single procedure and pre and post op visit, laying quietly next to the exam chair. Each time I got the terrible news that my blindness was progressing and that we needed to go back to the operating room,  I could reach down to my right side next to the chair to scratch his head nervously, and be instantly soothed by a heartfelt Labrador gently licking my hand.  I would not be the confident, capable and brave woman that I am today had I not made this decision, by far the best decision I’ve made since my diagnosis.

So here’s to Elvis, and to hopefully another 3 good years together, or as long as he tolerates my shenanigans.  I think my dancing on bars and waving a sword, and competing in triathlons has prematurely aged the poor, dedicated four-legged soul.  God bless my tall handsome blonde man as we celebrate his 7th birthday on Valentine’s Day next week, and I thank god for each and every day that he came into my life, making me whole again when I was so, so broken.

How Guide Dogs Help the Blind with Amy Dixon and Elvis

I spoke at the Trumbull CT Elementary Schools yesterday about Guide Dogs and how they assist the blind and visually impaired. Please take the 9 minutes to watch and LEARN how amazing these dogs and exactly WHAT Elvis does each day, HOW he was trained, and the ‘rules’ for your behavior when you meet a guide dog team on the street.

Blindness, Mobility and the ‘art’ of winter travel

Imagine going to a street corner, ready to cross at the cross-walk, then asking your guide dog to obey the command, “Elvis, Forward”, only to be met with a sudden stop.  You’re confused, disoriented even.  You come to this intersection every day and know it like the back of your hand.  You ask your trusted friend again.  He spins you 180 degrees around, only to take you back to your lonely apartment.  Why?  There’s a 3 foot wall of snow blocking the intersection. Guide dogs have been trained specifically NOT to guide the blind on uneven, icy, or snowy footing. These dogs have been taught something unique from ANY other animal on the planet.  It’s a built-in ‘governor’ if-you-will, that allows the dog to have the veto power in the relationship.  If given a specific command by his handler that the dog deems unsafe, the dog is TRAINED to disobey his owner.  Once you have asked the same command twice, the dog will shut down or re-route you to a safer location to cross or avoid the unsafe area entirely.  It is paramount to our safety as blind travelers.

 

I am now entering into my 5th official winter as a blind person traveling formerly with a cane, and later a Guiding Eyes for the Blind Guide Dog.  I had no idea what I was truly getting myself into the day I finally turned in my driver’s license on December 11th 2008.  I envisioned lots of friends with cars who would assist me in getting to places like the grocery store, and an easy commute to my job as the Fine Wine Buyer for a major chain of retail stores.  I was ill prepared for the reality of what was to come.  

 

I was born and raised in Westchester County in New York State.  Growing up I lived in a semi-rural area with no sidewalks and invisible neighbors, surrounded by thick woods and lined by stone walls and fields with our horses grazing peacefully.  I never ever envisioned myself as a city dweller, nor did I ever aspire to be.  The hustle and bustle, the noise, the smells, and the vast display of concrete held little appeal to me.  Never would I have imagined at 33 years of age that my first piece of advice upon losing my sight was to ‘move to the city’.  The thought terrified me at the time, but 5 years later, I’m beginning to ‘see’ the wisdom in this advice.

 

With limited vision, travel is already a challenge.  The wisest decision I’ve made in the past five years was to move from suburbia in the town of Fairfield CT, to downtown Greenwich, near shops, transit and my gym and PEOPLE.  Living in Fairfield made me truly feel isolated and disabled in a way that rocked me to my core.  I was terribly depressed and felt utterly hopeless at times.  The 3/4 mile walk to the bus stop felt like an insurmountable object to my independence. The town left sidewalk maintenance in the hands of the homeowners, with a statute indicating that they were required to clear the sidewalk within 12 hours of the first snowfall.  Needless to say, no one enforced this, and I would spend the winter months stuck at home, alone and isolated from my formerly busy social life.  

 

Bus travel is the cheapest and generally most reliable travel aid to the disabled community.  Most disabled fares are less than $1, and you can get to a variety of places depending upon your proximity to a major city.  My wise decision to move to Greenwich gives me a few good options, provided that my transit is along the major thoroughfare, which is known as Route 1 or the Boston Post Road, which literally runs from Boston to Florida.  Elvis is not a huge fan of the bus, as we generally sit near the front in the handicap seat, where he gets stepped on, petted, shoved, and slides helplessly on his belly each time the bus comes to a sudden stop (nearly every two blocks for more than 8 miles).  I’m not a huge fan of the bus, as it’s difficult to find a safe place to keep Elvis out of the way, and find the floor to be particularly disgusting in the winter, causing my beautiful Blonde Labrador to look unkept and dirty.  Plus, I’m prone to motion sickness, and the constant abrupt starts and stops tend to set me over the edge.  I end up having to make small talk with curious onlookers who are admiring my dog, and sometimes have to hold his head in my lap, as many bus riders are terrified of dogs.

 

The train is certainly the easiest in many ways, especially for distance travel, but getting to the train leaves a lot to be desired for blind guide dog handlers.  For one, winter travel on sidewalks, stairs, and train platforms means rock salt.  Rock salt on dog paws presents a major challenge.  Guiding Eyes for the Blind provides each new guide dog team with a pair of Grip-tex “Ruff Wear” rubber-soled booties.  They train their guide dogs to wear these.  However, I have yet to meet a dog who will actually ignore these booties and walk with a normal gait with them on.  Elvis acts like he’s walking on broken glass when they are put on his paws, moonwalking his way down my hallway to the front door of my apartment building.  His ridiculous behavior often is so distracting to his actual work, that I relent and call a taxi to avoid having him suffer the mile long walk to the train in his extreme discomfort.  Having watched him gingerly hold his salt-encrusted paws up on the train platform however, makes me realize that I’d rather have him unhappy with me than in pain.  

Because of the shorter days and reduced visibility in the winter, I look somewhat like a airplane runway engineer, with my flashing dog collar, reflective vest, Yaktrax grippy shoe covers, fleece skull cap, and flashing strobe light attached to both Elvis’ harness and my backpack.  My backpack is heavier due to the multiple layers I need to pack for myself, the ‘indoor’ shoes for when I reach my destination, and the wet wipes I carry for Elvis’ dirty body and paws from laying on the gross train or bus floor.  I feel more ‘Sherpa’ and less ‘Cosmopolitan single female Sommelier’ in the winter.  I try to remind myself daily that commuters to Manhattan probably face the same challenge, but realize as I stand on the train platform that it is indeed different.  If ONLY I could safely carry coffee or a cute handbag!  An umbrella is a thing of the past.  Guide dogs require your left hand on the harness handle to safely communicate between dog and human.  The other hand needs to be free to give the forward, left, right, wait, sit, stand, and down commands to your dog.  Coffee or bags with handles are not an option.  Also, god forbid, you lose your balance, it’s nice to have a hand free to grab a stair railing or the person next to you.

 

Finally, with the winter weather, protecting our eyes is paramount.  Blowing snow, wayward plows spraying salt as they speed by, and lower hanging tree branches above the sidewalk present the greatest of dangers to the visually impaired.  Wearing eye protection with UV filters further reduces our limited vision, but protects us from the additional dangers that winter incurs.  Ironically, in the winter I am even MORE dependant on Elvis due to the limited daylight and poor visibility in the grey days, yet it is Elvis that needs even more help from ME at this time of year.  Taxis are prohibitively expensive for the disabled on a fixed income, but if your life is like mine, without a set ‘routine’ time of travel, arranging cheaper local paratransit proves difficult.  I try to justify my $450/ month winter taxi bills this way.  Back when I drove, that was essentially my car payment.  Gas and tires and insurance added to that monthly total. So while YES, my disability income is HALF of when I was working, my overhead is somewhat reduced (albeit now replaced by expensive glaucoma meds).  Public transit can be a wonderful thing when it works properly.  I find that the ‘suburban’ bus drivers often accidentally pass me by, leaving me shivering by the side of the road waiting in sub 20 degree temps for the next bus in 30 minutes,  Why does this happen?  Despite the large leather harness on my guide dog, these drivers will sometimes mistake me for some blonde lady out ‘walking her dog’ by the side of the road and keep on driving past, despite my frantic waving and yelling.  

So while it’s not glamorous, I am grateful to be in a more ‘metropolitan’ city such as Greenwich CT, with its multitude of transit options, and my vast supply of generous friends with cars.  The sidewalks are reasonably well maintained with a few exceptions, and I no longer feel stranded or isolated.  As for the potential of city dwelling?  Well, honestly I’m not sure.  I’m already dreading a few wine trade shows and tastings I need to attend in New York City this month.  Between the salt on Elvis’ feet, and the giant blocks of snow blocking the crosswalks for safe, accurate, and straight passage, I’m not sure I want to tackle it on a yearly basis.  While summer travel can be challenging on hot pavement, there is less disruption in Elvis’ and my lives in the summer.  We can get everywhere we need to on foot and generally without external assistance.  Texas and California are calling……

 

My message to you readers is to think about your disabled friends this winter.  Perhaps help shovel them out.  Maybe buy them a bag of ‘Paw-safe’ ice-melt for their four-legged friends.  Offer a joint trip to the grocery store if you’re already going.  Maybe a lift to the gym where you work out together, a doggie play date for their ‘cooped up guide dog’, or even take them out to escape their winter hibernation and isolation for a simple cup of coffee.  These may seem like little things to you, but for the disabled people living in a typical New England winter, they mean more to us than words could ever say.  Thank you to all of my wonderful friends.  

 

 

 

 

Inspiring the next generation

I’ve had the most FREAKING AMAZING week.  I was featured in the Wall Street Journal about my 18 year career in the wine industry, and more recently my journey into the world of blindness and triathlon.  The article was written by an icon in the wine writing industry, Lettie Teague, herself an industry veteran with an amazing way with both wine and words.  The flood of emails, Facebook posts, and twitter tweets have made me swell with pride and love from hundreds of well-wishers and customers and friends.  So you can imagine my surprise that my week would get even better after I received an impeccable essay written by a young man who interviewed me last month for a school project.

His praise and prose both lifted my heart, and made me cry with disbelief.  I am SO honored to share this beautiful accounting of my life with you all, and please join me in thanking and congratulating Andrew for such a great job and knocking it out of the park, making THIS blind girl one honored and humbled young woman.  Andrew, THANK YOU!  I’ve also included a link to the Wall Street Journal article at the bottom- what a week!

Believe, Dream, Inspire is all Amy Dixon

            Go Amy, GO! Wow, she is really amazing – is she really blind? Wow! Heroes come in different sizes, shapes, and abilities, but what about disabilities? Can you see your roadblocks? Amy Dixon can jump, run, and swim over them without being able to see them. Amy truly makes others believe the impossible, dream large and make those dreams come true, and she is very inspiring to everyone for what she has faced and how she overcomes obstacles in life.

Amy Dixon only has 1% of her vision left in one eye and is totally blind in the other. When she was 22 years old, she was diagnosed with Multi-focal choroiditis, which makes you loose sight quickly as you get older. Well, I have never heard of this disease, one might say.  This is because only 50 patients in the USA have this disease. There is no true cure for her disease and she has to go though many painful surgeries just to keep her pinhole vision.

How does Amy live and do general things in a day? With her white lab Elvis, Amy can find the door handle, the trashcan and obstacles that are in her way when she is walking. Amy can take Elvis wherever, in a restaurant, they will be fined if she isn’t allowed in or on an air plane, the people are only allowed to ask is that a service dog and what task has it been trained to perform but nothing else. The only time Elvis cannot be on the lookout for Amy is when Amy says, “break” or lets his harness off. Then Elvis could do his business and roam around like a regular dog. Amy even has to hold his tail when Elvis poops so she can find the poop and pick it up. Also, on Amy’s iPhone, she has money-counting apps, apps that can read the text on her screen, siri for facebook posts, and many more. She has thought of different ways to live life just like sighted people do. Even though one might think Amy might have a hard life, Amy loves life and enjoys every second of every day like how everyone should.

Even before she was losing her vision, her passion was for wine.  She became a sommelier, which is someone with an expertise in wine.  Now, because she cannot see the wine, she has to use her other senses, like smelling and tasting.  These senses got stronger as she was losing her vision, so she can still perform her passion.

Amy was not always looking at her life in a positive way.  With all of her steroids and surgeries, and being discouraged to do anything, she gained 30 pounds and put her life on pause.  One day, one of her friends told her, “Why don’t we go for a short swim?”  Since Amy was a swimmer in college, she said, “Sure.  Why not.”  From a small swim to a longer swim, Amy became more active and realized that her life isn’t over.  From her hard work, she wrote on her facebook, “Yay! Size 4 Dress from mom!!! Finally!  Lots of hard work to get here, and I’m NEVER going back to size 12!  Steroids be damned!”

Even though she is almost blind, she is one of the most active people I know. With her white lab Elvis, who helps her with everything, Amy can do whatever her mind can think of. Amy trains every day for races, triathlons, you name it. And if there is no triathlon, she will run miles each day or ride in a spin class, which is where there is a bike mounted to the ground. Every time she enters in triathlons, when she bikes, she rides a two person bike. When she swims and runs, Amy and her partner will have a rope attached to their wrists so Amy knows where she is going. If everyone can see what she is going through, they can believe that if a disabled person can do this, one can achieve what they always wanted to do.

People can dream and dream saying I want to do this, but do they actually do it? When Amy has a goal, she would always reach for it and even go higher. When Amy is in triathlons, she dreams of being in the top ten, but… She did more than that… Amy came in second in New York City and San Diego and many other competitions. Plus, Amy does not only think about herself, she gives back to the community. She volunteers in the Lions club, which helps people who are blind. Even when it was cold and windy, when I came to visit her, she had a plan to stand on the sidewalk with Elvis and sell grapefruits to help the Lions club, and then exercise with the Navy SEALS, yes the Navy SEALS in the local YMCA and then help even more. With her expertise and passion for wines, she manages the wine auction for Near & Far Aid, a charity that helps poor people.  Even though it is volunteer work, Amy loves helping out other people in need.

Amy gets inspired by other people who believe and follow their dreams, like disabled friends, veterans and soldiers. She swims with men who are trying out to get into a two year course just to apply for the Navy SEALS.  She does the exercises that the Navy SEALS do, like swimming with only their head out of the water and their body underwater.  Also, her friends are veterans that got disabled after the war by getting hit by cars and Brad Snyder, a veteran who lost his eyes from walking over a bomb in Afghanistan.  But this is not all, then he trained to be in the Olympics in London not even a year later and got two gold and one silver! All of these people inspire her to overcome challenges and then Amy inspires people by what she does. If Amy wants to do something, she does it. She will dream and dream to a point, where she will be exhausted at night and dream some more.

Many people in this world are inspiring, but how can a person become inspiring? Amy Dixon is the most inspiring person a person can be. Why doesn’t she give up, she’s blind. But that does not mean that her life is over. No, it means that she has to be better than she used to be. Just think about oh, I am too lazy to do this or that, but Amy sets herself to be superior, not to fail. Amy impacts everyone’s life after they hear her story, by showing life is not over yet.

Amy, to me and everyone else, stands out to be named as an inspiring woman, that dreams until there is no more to dream, and inspires other people so much from her story. Amy has learned to accept life, defy her challenges, get over being called disabled, and she can make lots of funny jokes, so she can live life to the fullest. If life throws changes, you have to overcome, and do what you were born to do, live is what Amy Dixon lives by. Amy makes me believe I can do anything I want, believe in excellence, and want to inspire others without putting them down.

http://online.wsj.com/news/article_email/SB10001424052702303932504579254372108156080-lMyQjAxMTAzMDEwMzExNDMyWj

 

EPIC End to an amazing Triathlon First Season

 

  9 months ago, I was a visually impaired female with Fibromyalgia, crippling bilateral bursitis, debilitating migraines, a thyroid that stopped working, and an adrenal insufficiency.  Adding insult to injury, because of all the meds I was on for these issues, plus some 11 eye surgeries, I had gained more than 45 pounds and was terribly depressed.  An accident that caused me to break my foot over a year ago, ended up causing me to seek the comfort and safety of exercise in the local YMCA pool, where I reinstated my love of distance swimming.  I hadn’t been to a spin class in a few years, and would sneak into the spin room when no one was watching to avoid embarrassment.  Then, through the power of social media, my life took a dramatic turn in a direction I truly never saw coming.

I met Caroline Gaynor, the head of Triathlon for Team RWB, a charity that works to help active duty military and veterans reintegrate to civilian life through social and physical activity.  I stumbled upon a Facebook page called “Visually Impaired Runners and Guides” for people like me who wanted to get active again after losing their eyesight, and to help me find a running guide near my house.  Like a beacon, there she was, less than 40 minutes away in NYC.  After inviting me to a triathlon expo and clinic at Columbia University where I met other disabled aspiring triathletes, I hunkered down and became more dedicated in my workouts.  I had a purpose again.  After so many heartbreaking and painful eye surgeries with mixed results, it was nice to see that I could again feel useful again and not have my body let me down.  I slowly crept up the mileage on the treadmill, the time on the spin bike, and the length in the pool.  I was really going to give this a shot.  

My guide dog and I were attacked by an off leash dog in the early spring, bringing my running to a grinding halt, just as I was starting to train with Achilles International, a disabled triathlon and running group in NYC.  I so looked forward to meeting other blind runners each week who had finished dozens of races from 5 miles to marathons and tons of triathlons.  I couldn’t believe it was possible until they each shared their stories of triumph and heartbreak and crashing through barriers with their trusted guides.  I worked hard in the pool with swim coach Joanne Dondero from the Greenwich Triathlon club, whose zen-like approach to triathlon and relaxed and smooth swimming built my confidence and speed very quickly.  Her patience, encouragement, and above and beyond attitude and availability for even the silliest of questions made me realize I had truly met someone special.  She helped me with my fear of deep and dark waters, and made me believe I was good at something again for the first time in a very long time.

 

I competed in my first triathlon with Caroline at my side, laughing, cheerleading and being all-around badass on the course, flying our way down hills past guys on carbon fiber fancy bikes.  I ran the hardest race of my life with her and Erica from Achilles at my side on an insanely hot day in June, after battling a bad stomach just hours before the race.  I was ready to quit at mile three on a hill when I saw an elderly woman in a wheelchair stuck midway up the hill.  People rushed to her aid to give her a push in the blaring sun, and I just KNEW I couldn’t quit.  It would be embarrassing.  After all, WHAT was my excuse?  I’m hot? Tired? miserable? so what!  She would give ANYTHING to be actually running up that hill alongside me.  I still think about this woman every time I get stuck in my training or have a rough moment in a race.  I CAN do this, so I SHOULD do this.  Blindness is not pain.  It is not crippling.  It is none of those things.  It is a loss.  And then you move on and do whatever it is that you used to do before blindness, except maybe just a little bit differently than you’re used to.  I can adapt to anything, I always tell myself.  And believe it or not, you do!

 

The NYC Triathlon was my first Olympic distance triathlon, and I was so honored when two RWB Members from Colorado and Texas agreed to fly out to NY to guide me.  Deedee and Heather are an amazing couple who bring joy and warmth to anyone they meet.  I was so touched that they would give up their weekend to give me, a total stranger, this gift of friendship and camaraderie.  Deedee is a pro mountain biker from Colorado, and Heather an Ironman triathlete and Naval Academy swimmer.  They trained hard, and Deedee bravely led me through more than 30 miles of the Hudson, the West Side Highway, and Central Park to an incredible second place finish my first time out at that distance.  

I was recruited to a regional USAT Paratriathlon Talent search and training camp, where I got to meet other disabled athletes from every background imaginable.  It was here that I met Patty Solimene Collins, a below the knee amputee Lt. Colonel in the US Army who was the current reigning World champion in her division of Paratriathlon.  I was star struck, and honored that she came to camp to volunteer as my running guide for the weekend.  The camp’s director, Robert Vigorito, invited me to come and compete at the Atlantic City International Sprint Triathlon, which would be the region’s first Paratriathlon Championship race.  Patty mentioned that she was from New Jersey, and would happily be my guide.  I was floored!  TWO Para Athletes competing as one team.  Now THAT’S a big deal.  So of course, I said yes.  

I began training hard to get my run time down, and had an amazing experience at the Challenged Athlete’s Foundation Triathlon Camp in San Diego this August.  There, the coaching staff of Mark Sortino, Peter Harsch, and John Murray gave each of us great advice and drills to execute when we got home.  I got to meet my mentor, Patricia Walsh, the current reigning National Champion Blind Athlete.  Currently Paratriathlon is divided into two categories for the blind, Tri 6A for totally blind Athletes, and Tri 6B for partially sighted athletes.  I was so grateful that for now, I would not have to race against this formidable competitor, as her run in a triathlon is up there with the elites.  I was excited to be able to hang with her on the bike, and have faster swims, but never in a million years can I run like Patricia.  She is a special woman and serious triathlete.  As my vision deteriorates, if I can someday sit on the podium beside her, it would be an incredible honor.

 

With all of these successes and triumphs, there is always a price tag.  During my training this spring, it was discovered that I have pretty significant exercise induced asthma.  I was put on a steroid inhaler, which was like the silver bullet for my lungs. I went from barely making it through a 5K in 42 minutes, to running 10 minute miles for 6 miles with ease.  Glaucoma is a nasty nasty disease.  I have steroid implants in both of my eyes to control my Uveitis (an inflammatory eye disease causing damage to the retina from severe scarring).  However, both the chronic inflammation, and the long term steroids cause one’s eye pressure to climb dangerously, which leads to glaucoma, which can eventually lead to total blindness due to optic nerve damage, the retina detaching, and the central vein in one’s eye to become ‘shut off’.  With the added steroids of an inhaler, my pressure skyrocketed in my remaining sighted eye, and I was faced with immediate surgery two weeks ago.  

 

I had convinced my Glaucoma Specialist to try a less invasive procedure with a cold laser to try and ‘clean up’ the filtration network around the eye that allows one’s eye to regulate its inter ocular pressure or IOP as we patients refer to it.  With this, I would have minimal scarring and it could buy me some time until major surgery was needed, when they would perhaps need to put in a significant valve to relieve the high pressure.  With the Championships in Atlantic City scheduled for the 15th of September, and the Northeast Paratriathlon Championships scheduled on the 28th, I was convinced this would allow me to finish out my season before I had to address the issue at hand.  Well, on the day of the laser procedure last Monday, my Glaucoma had other plans.  During the short wait of two weeks to schedule the laser procedure, my IOP had climbed to a dangerously high 45mm Hg.  Normal is 10.  According to my doctor, I was no longer able to do the laser procedure.  I was too far gone.  Dr. Tsai at Yale wanted to schedule me for immediate valve surgery the following day.  

 

I was pissed off.  After working so hard and battling so many obstacles of finances, broken feet, sprained ankles, and my weight, the last thing I wanted standing in my way was the very eye disease that I had overcome by turning to Paratriathlon.  It was a cruel turn of events, and I took a look at Dr. Tsai and made my case for why I should be allowed to compete this past weekend.  He shook his head, and made me promise not to go hard or drink too much water or do any bending over and to come in right away if my vision suddenly went dark.  Did he ever WATCH a triathlon?  Did he know me?  Well, I wasn’t about to fill him in on what I was about to do.  I knew the surgery would likely blind me, due to my severe scarring problem.  I have 1% of vision left in my GOOD eye, and any surgery to that eye will cause severe Keloid Scarring, which caused severe pain for months on end in my right eye, and eventual blindness.  Because the surgery itself causes inflammation and scarring, I would be left with little sight, if any, and a lot of pain for months.  I begged him to wait until after Montauk, for the Northeast Championships.  He left me no other option than to come in two days after my Atlantic City race.  I decided I would crush it.

 

Patty Collins, my guide was herself competing at the World Championships in London on Friday with the US Team.  Our race was on Sunday, and she planned to fly into Philadelphia the night before the race to guide me.  I panicked as the race got closer, and scurried to line up backup guides, but quickly learned that finding someone tall enough to pilot my friend’s borrowed tandem was going to be a challenge.  The race director stepped in and used the power of social media to attract potential guides, who lined up by the dozens to give up their OWN race to be my guide.  I was touched beyond belief, and lined up a great woman I met online as the Plan B.  

4 days prior to the race, I remembered that I had met the CFO of Thule Roof Racks when I was speaking about Service Dogs at his son’s Boy Scout Troop.  He had mentioned that if I ever needed a rack, to please let him know.  Borrowing Scott’s rack was certainly an option, but having my own would make life much easier going forward for both myself and my mother who was always worried about the two of us accidentally dropping the heavy bike onto her pristine car roof.  With one email, I had a rack on the way for FREE thanks to Mark and the great folks at Thule!

 

Mom and I headed down to the race, and were happily greeted by familiar faces from the summer Para triathlon camp.  We helped Howie Sanborn, a wheelchair triathlete, assemble his racing chair and hand cycle, an irony that wasn’t lost on this visually impaired athlete.  I was honored that he let me even touch his gorgeous carbon fiber cycle, let alone assemble it by feel!  I got to meet Ironman triathlete, and fellow blind competitor, Miss Tina Ament and her cool German Shepherd Guide Dog from Leader Dogs.  She had a beautiful custom carbon tandem from Calfee that left me drooling for my own racing bike.  I was applying for a grant at the Challenged Athletes Foundation for my very own bike, and praying that I could get something so special and perfect for me and a smaller female pilot.  We palled around with other athletes, checked into the hotel, and attended a mandatory meeting for all the disabled athletes to go over the course and the rules for the following morning.  The wind whipped across the field of the transition area where we left our bikes for the night, and I was eager to get into a warm vehicle so we could leave and get some food.  

 

Anxiously during dinner at the Chelsea hotel with Tina and her guide Anne, I checked my phone for news of Patty’s arrival.  Her plane had landed and she was in horrible traffic due to the Miss America Pageant that was taking place that weekend in Atlantic City.  She was only a few blocks away, but not moving.  I began to relax and bid Howie, Tina, Anne, and her sherpa Catherine goodnight, and prepared to greet my weary traveler.  Patty arrived with a smile on her face, not looking like I had expected.  She appeared rested and ready to tackle the morning’s race.  We caught up on the course and the game plan for the morning, and got fast to sleep.

4:45 is an ungodly hour.  I cursed the alarm and rolled out of bed, prepared for a morning of my usual intestinal distress and prerace nerves.   Surprisingly, I felt pretty darn good.  My checklist was in order, and I had made sure to bring my protein shake from home to avoid any unexpected food the morning of such an important race.  At the race, we grabbed our gear bags and walked them into transition, huddled beneath down jackets and hooded sweatshirts in the 46 degree temperatures.  Patty and I were dreading taking off the layers in order to put on our wetsuits.  I managed to convince the race officials to allow Patty and I our ONLY test ride on the tandem, which we clipped into with ease.  I had been incredibly nervous about how she would manage with her prosthetic left leg in coordinating the starting and stopping and unclipping, but she handled it better than most of my pilots that had been on tandems before.  We would be fine, and my stomach settled again.

At the start, we hunted for the porta potties, and snuggled up with the other freezing para athletes.  We were the very first wave of the race, and we were getting cheers and high fives from the age groupers who would be following 15 minutes behind us.  The swim was in a channel behind the boardwalk, and the water was still and smooth, with a lovely temperature of 74 degrees.  As we jumped up and down for warmth on shore, I was eager to get in and warm up.  Patty and I eased into the water and practiced our first tethered swim together.  She was tied to the right side of me, and had a great stroke.  I was grateful that she was breathing left, so I could see her face with each stroke, and hear her verbal commands when needed.  Then it happened.

 

I hit the first jellyfish with my left hand and leapt vertically out of the water, squealing like a girl.  Patty looked at me like I had lost my mind.  Actually I was starting to……  There are LOTS of jellyfish where I live in CT.  They are mostly the non-stinging little ‘comb jellyfish’ that are the size of a half dollar and slip right through your fingers, causing you no harm.  I was hitting some rather significant blobs and starting to become a little unglued.  Patty was convinced that I was crazy, and kept telling me that I was mistaken, and that it was in fact seaweed that I had been tangling with.  I looked over at Howie, who validated my complaint.  This was going to suck, was all I could think.  They sang the National Anthem while we treaded water, and I looked around with pride at all the active duty military and wounded veterans that surrounded me in the water.  I could not believe at that moment, that this was in fact my real life.

 

With that, the crowd roared and the gun started.  It was time for business.  I began fast, then remembered what Tom, Patty, and Howie had all said prior to the race; “Slow is smooth, and smooth is fast”.  I focused on long, smooth strokes, with good pull and a full body rotation.  I was a little confused about where I was actually going, then came upon a swimmer to my left, who I kept climbing up on by accident.  I heard a loud, “HEY!” and realized it was Thomas Lee.  Tom’s been working hard on his swim, so I was secretly happy that he was keeping up with me.  But then I realized that I was probably taking off too much pace, and got back to it.  Bam!  I hit another jellyfish.  I said a silent, “Yuck” and swam on until getting tangled in the first buoy.  I looked for Patty, who was still rounding the turn to my right, and followed.  I suddenly hit a sea of jelly blobs, and felt utterly hopeless.  I was trying so hard to focus on Coach Joanne’s words, “Tickle their bellies, gently push them out of your way.  Remember, you’re in THEIR house, not yours.  Be respectful and keep going.”  I was practically in tears out of fear of being stung if god forbid one of them turned out to be a giant red one, which I obviously couldn’t see.  I spread my fingers wide like a fan to allow them to ‘slip’ through my fingers with the water.  That proved an excellent strategy until I hit the Mac Daddy of all the Jellies.  He got STUCK in between my fingers, and was draped down my palm and the back of my hand like a silicone breast implant.  I lifted my entire hand high out of the water, and launched him over Patty’s head, where he landed with a sickeningly satisfying “plop”.  I silently cheered my bravery, and decided to start kicking to the finish.  The crowd went wild.  

 

A handler helped us out of the water, and I looked up to see Tom getting out at the same time.  It was pretty exciting to see him do so well, but at the same time disappointing to know that I really blew my chance at a sizable lead in the only of the three disciplines in which I truly excelled.  A handler helped Patty get her run leg on as I stripped off my wetsuit, and we locked arms to run to transition where our bike awaited us.  The pavement to transition was excruciating to run on in freezing cold bare feet.  I tried like heck to tread lightly, but the rough concrete felt like an awful form of torture.  Patty was lightening fast in getting her bike leg and helmet on, and we jogged the bike to the starting line, and we were off.  

 

The beginning of the course was really tricky, especially for a tandem.  The main race area was an old air strip, and we needed to get out onto the main road, and eventually the highway. In our way was a brief ride across sand through narrow winding cones that would prove challenging to an experienced team, let alone one that had little more than 5 minutes of riding together during our mini practice. We couldn’t go too fast, as we would blow the turn, and we couldn’t go too slow, or the bike would get bogged down in the sand, and we would fall over while clipped in. I held my breathe as we carefully navigated the sand and got out to the street. Patty and I hit the gas like our tail was on fire and we were off!

We entered the highway and went through a toll booth. The police and volunteers out on the road were obviously not prepared for us, and some were even texting as we approached. Within a couple of miles, we passed Tom, although I knew that his fast running speed would make quick work of that gap. We caught Hand cyclist Scott, who was cruising up ahead followed by a lead vehicle to keep him safe. Patty was doing an amazing job, and I suddenly realized the irony that the bike was constantly tipping right with each pedal stroke. Then it dawned on me! OF COURSE it would! Between her prosthetic being on her left leg, and my clearly stronger right leg, we were crushing the right-sided pedal strokes, and weaker on the left. I laughed to myself, and focused more attention on my weaker left quadricep. Patty handled the gears like a pro, and we were cruising at 24-26 mph, by far the fastest I had ever traveled on a flat road. She kept repeating our speed to me, but it was hard to reply back to her, due to both my asthma, the cold air, and her sound-proof Aero helmet.

As we neared the end of the course, there were cars and a giant dump truck blocking our lane. They clearly were not prepared for the first cyclist, which was apparently US! Patty and I shouted at the police and the cars, and carefully navigated through the traffic safely, only to land back on the horrific dangerous sand pile. We powered through in a low gear, and managed to finally reach pavement again. We hit the final sprint, and I saw my mom turn around surprised that we were back so fast. Honestly, so was I!

We dismounted, and I unclipped my helmet. Patty stopped the bike and gave me a quick dressing down, telling me I had to put my helmet back on immediately or we would be DQ’d. I fumbled for what seemed like forever, and we trotted the bike into the rack. Within seconds I had my run shoes and visor on. I jogged in place, and caught my breathe as Patty slipped off her bike prosthetic leg, and placed the run leg on. As she looped my tether around her wrist, I took off running, only to fall backwards as Patty stopped suddenly. Something was wrong. Her leg wouldn’t lock into its socket. I struggled to understand what was happening, as I saw Tina and her guide now come into transition, change, then beat us out. We had lost our lead. Poor Patty was becoming unglued. I looked at her and said the same thing she had said to me early that morning. “Slow is smooth, and smooth is fast. Don’t worry about it. It happens. Just take your time.” She was getting more and more frustrated, and finally had to take the entire sock off and retry the prosthetic. With a little extra effort, she clipped in, and we were off. I thought to myself, “It could JUST as easily have been ME, dropping my helmet, or my inhaler. Shit happens. Let’s DO this!”

Patty was determined to close the gap that Tina and Anne had built. They were already running strongly onto the street, headed out for the historic boardwalk. I asked Patty for a time check, to discover that I was running an 8:45 mile. I told her to back off, as I KNEW that I would crap out at that pace given how much effort we had put into the bike. My intention was to run a 9:30, then drop it down after the first mile.

Tina and Anne were only 50 yards in front of us as we hit the boardwalk. Patty asked me the plan. Did I want to start closing the gap now or wait until the halfway mark and do it then? I agreed to wait, and settled into focusing on my form and breathing. Patty is an excellent runner, and was fantastic about fixing my fading form, encouraging me to use my arms, keep my thumbs pointed up, and my head and shoulders up. I looked up to be alarmed that Anne and Tina were now opening up their lead. I had underestimated Tina’s running ability, thinking that a distance runner couldn’t possibly ALSO be fast. Well she was! Shortly thereafter, Tom passed me, and we joked with him about his butt in tri shorts, and told him he was good eye candy to keep us moving! Within minutes the male elite leaders passed us, and we had some fine looking young men to keep our eyes busy and our legs motivated to move a little faster….

We rounded the turn for home at the half way mark, and I worked hard at focusing on using my hips and butt to drive my run home. I was exhaling hard to eliminate the asthma-inducing buildup of Carbon Dioxide that was beginning to rear its ugly head. Then I smelled bacon. I must have said it aloud, as Patty asked me what I had said. At this point, I was becoming breathless. “BACON- I smell BACON!” I yelled to Patty. She laughed at my absurdity in the middle of our big move, and we carried on. She kept up her coaching every couple hundred meters. Having something else to focus on, other than my diminishing oxygen was incredibly empowering and wonderfully distracting. I was becoming discouraged, as Tina’s lead was now nearly 200 meters, and I was starting to realize that I had made my move too little, too late.

When I start to get in my head like this, I started to list the things I had control of. I could control my breathing, I could send power to my glutes, quads and arms. I could be sure I was up on my toes, and that my cadence was keeping my feet under my body with every step. This I could do. I had only a mile to run, and I told myself that I had run faster and further, and that I felt good despite my unsteady breathing. I could totally finish this, AND finish it strong.

We got a lot of praise and cheers from the other competitors on the course as we made our way back into the airfield from the boardwalk, as the age group competitors began their run out. I could see the giant finish chute, and new that there would be an army of supporters there to cheer us home. While I wasn’t going to catch Tina, I could finish with a great deal of pride that we had put it all out there and felt strong and fast up until the very end. I started to smile as we neared the screaming crowd, and grabbed Patty’s hand. We crossed the finish line together, and I gave her the biggest hug I have ever given a person without hurting them!

Waiting for us at the finish line were three class-act folks; Tina and Anne gave us a hug of congratulations, which left me in tears with honor and pride, and Robert Vigorito, a USAT Lifetime Achievement Award Recipient, proudly placed my medal around my neck, giving me a great bear hug and kiss. I couldn’t have been more happy than if it were my wedding day.

Tomorrow at 2pm I am headed to Yale University Hospital for Surgery number 13 on my eyes. While I’ve been afraid for years of this day, when I’m at the end stage of my disease, and the last light is taken from my sight, I can honestly say I’m at peace with it, knowing that this past weekend provided memories for me that will last a lifetime. For Patty to give up attending her OWN silver medal ceremony at the world Championships in London, to immediately then hop a plane to come back and guide me, missing out on her special moment, she had given me mine.

I am uncertain what the future will hold, but I do know that I have made friendships to last a lifetime, met the most inspiring challenged athletes who persevere through pain and personal tragedy to come out and give the course their all, and I have found my own physical and emotional strength to carry me through my journey, knowing that I have a world of supporters there to help me succeed and achieve my dreams. I may be blind, but I will never, ever be afraid, helpless or alone again. Having my Guide Dog Elvis gave me my freedom back. Becoming a triathlete gave me a new life.

God Bless the following folks: Laurie Hollander, David Kuhn, Caroline Gaynor, Patty Collins, John Eng, Deedee Johnson, Heather Purvis, my mom Cathy and stepfather Rick and sister Cindy, Tim McCall, Coach Joanne, Clare Zecher, Wendy Coleman, Thule’s Mark Cohen, Bryon Solberg, Mike Jennings, Scott Nickel, Julie Eiben, and Carol Kana for changing what could have been a disastrous year into the best year of my life.

Challenged Athletes Inspiring me at Camp

It’s official.  I’m a 37 year old Camper.  I spent the last 4 days in a whirlwind of lectures, gait analysis, stroke analysis, swim training and all out racing in the presence of some of the greatest triathlon coaches in the world.  But what I will take away with me forever is the inspiration and sheer joy of seeing other disabled athletes break through barriers they had mentally set for themselves and come out on the other side successful and triumphant.  

Each individual had their story of a terrible injury- drunk drivers, distracted drivers, boating accidents, brain tumors, chemo patients, sniper fire and things too horrific to think about.  We each told our stories to each other as a form of introduction and then it was immediately forgotten.  The person before us wasn’t injured in each other’s eyes.  We were athletes.  We were there to learn, and train, get better, and compete with the best of the best in our sport.  Though some of us were missing limbs, and missing eyesight, for four days we were whole.

The Challenged Athletes Foundation based in San Diego generously hosted me and 17 other disabled triathletes for four days of intense instruction and drills.  It was recently announced that Para Triathlon will be an official sport at the 2016 Rio Paralympics, and many of my friends in the disabled community have their sites set on Olympic Gold.  This was the opportunity of a lifetime for each and every one of us to learn from Elite Masters’ Swim Coach and Ironman John Murray, Kona Ironman Champions and finishers Carlos Moleda, Peter Harsch, and Mark Sortino.  Mark also is coaching the current US National Team.  

The first full day involved swim analysis with John, where I was video-taped and discovered that my ‘blade-angle’ was changing in my hands during my stroke.  On the Run analysis with Peter, who is a certified Prosthetist, he had me increase my cadence from 85-96 steps per minute on the treadmill, which was extremely difficult and awkward to maintain.  However, he took the time to really explain to me how it would save my legs from injury and eventually make me a faster more efficient runner.  Lastly, I had a bike fitting on a borrowed tandem by Mark, who pointed out that my left leg is much shorter than my right, which is inhibiting my pedal stroke.  He quickly suggested I get a shim inserted in the cleat of my cycling shoes to fix the imbalance to prevent further issues.  

We had a great dinner, and I got to hang out with one triathlete who is a personal trainer in the DC area who seemed to take his injury literally in stride and hit the ground running to get back to his beloved sport.  I looked forward to spending time with my assigned mentor, Ironman finisher and current world Champion Blind Triathlete, Patricia Walsh, an engineer from Texas, who was flying in to finish her training for this year’s world Championships in London, and to show me the ropes.  

Saturday was a 30 mile bike ride assigned for the morning session, followed by a track session in the afternoon.  I prayed that my legs would hold out for the beating that was about to ensue.  San Diego is famous for their blind tandem bike riding club known as the Blind Stoker’s club, and they generously found me a pilot to train with and his beautiful custom tandem to ride on.  I didn’t find out until 36 hours later that Mike Jennings, my pilot for the weekend was a world Champion Master’s Cyclist, and that I was literally in some of the finest hands one could ask for as a blind cyclist.

Our ride took us up the canyon in Torrey Pines, near the famed Golf Course, and into the mountains.  Some people rode single bikes with their prosthetic legs, some of us were on tandems, and others rode the giant hills using their hand-cycles, while laying near flat on their back as traffic whizzed by.  Mike and I flew on his tandem, and the climbing was effortless due to his shifting wizardry and deft handling of even the tightest turns.  On the return trip back to the Challenged Athlete’s Foundation building, we swerved suddenly, and Mike brought the bike to a smooth, steady, fast halt.  He hopped off the front and went back about 15 feet to where a Diamondback Rattlesnake lay sunning itself in the middle of the bike path.  A crowd began to gather as he bravely found a long tree branch and escorted the very angry three-foot fat snake up the hill to where it could no longer strike at a passing cyclist.  I nearly fainted.

After our riding adventure, it was off to a local high school track to learn how to really run more efficiently.  Peter and Mark took us through cadence and stepping and running drills and stretches, then tested our sense of pacing on the track.  They had us do five sets of 200 meters; the first at a warmup pace, one at marathon pace, one at half marathon pace, one at 10K pace, and the last at our 5K race pace.  I bombed out on my bad math skills by the second set, having gone out way too fast in my warmup pace.  I learned a valuable lesson that running is a lot of math, and I’d better learn quick if I ever want to compete over longer distance at an even pace, or faster at shorter distances.  It was humbling and completely educational in every way.  The good news was that I was starting to feel more comfortable with the quicker cadence that Peter had me shooting for.  

We had a more formal dinner that evening, and it was nice to see the group outside of exercise gear, and hear more training and racing stories from one another.  Elvis had a blast hanging out with another athlete’s service dog, a gorgeous Husky owned by an elite track star named Kionte.  We sat through seminars about racing, nutrition, and the rules and hierarchy of para triathlon sports, and I took fastidious notes.  I grabbed a quick hot tub to soothe my muscles from the bike ride, and hit the sack early to prepare for my first West Coast open water swim and our triple Duathlon on the final day.  

The early morning meeting at La Jolla Beach left me with butterflies in my stomach. While I’m really comfortable in my cozy little Long Island Sound, I kept imagining sharks and stingrays nipping at my dangling legs in the water. Mike, my tandem captain, met us there also, as he was a fairly experienced surfer, and wanted to get some swim practice in as well. As Mark was making the announcements of the morning, I turned around to see one of my favorite people in the triathlon business, Mr. Ray Kelly. Ray was the race organizer of the VERY FIRST triathlon I did as a blind athlete back in June with my guide Caroline. The race had never accomomdated a para-triathlete before, and he moved mountains to make the day fun, safe, and accessible for me. He even gave me my own award at the beginning of the ceremony. It was a day I will truly never forget thanks to him. He had recently moved from Stamford CT to San Diego, and I had secretly hoped our paths would cross again. At 7am oceanside in San Diego, here we were, about to hop into the water together. I was thrilled!

I had a great lesson with Ray, who showed me how to Dolphin dive out into the waves to increase my speed during a beach entry. He was patient while I had a few panics while getting caught in the kelp that drifted around the ocean and looked an awful lot like a giant jellyfish with long tentacles. Once I got the hang of pushing it under my body, we got into a great rhythm in the tall waves. We met a group of other athletes way out in the La Jolla Cove, and swam back and forth along some buoys that kept out the boaters and sharks.

On our way back to the shore, I spotted a giant seal, at least 300lbs swimming about 20 feet behind us. It was absolutely beautiful and so effortless, and his face looked just like a dogs. I hugged Ray and thank him for such a great experience, and we packed up and headed to the CAF Center for our Triple Duathlon.

It would be three laps of cycling 1/3 mile, followed by one lap running, and repeated 3 times at our all-out race effort pace. I was concerned about managing my asthma, but had gotten some great tips on using my inhaler more effectively by another camper, Dr. Bryon, himself an anesthesiologist. My goal was to finish as close to Patricia as possible, ideally with her within sight’s distance. This would be a real tough challenge, but a great test of the training I had done so far. To even be in the same room with Patricia was awe-inspiring, and her cool, calm, focus and great advice was so wonderful to have at my disposal.

Mike and I had a powerful first lap, gaining a 1 minute lead on Patricia and her guide. Going from a complete stop to sprinting took its toll on my sensitive lungs, and I found myself practicing deep, forced exhales to clear the Carbon Dioxide from my lungs as they began to burn. Mike smartly slowed as we came into the transition area so I could regain my breathing and get out fast on the run. My transition was perfect- helmet off, shoes off, running shoes on, tether on, and visor and I hooked onto running guide John’s capable arm and away we went. I was on cloud nine! I knew, however that the great lead I had built on the bike and transition would be a fleeting moment as Patricia is a fast, skilled runner, often running 6:30 minute miles to my pokey 9:30 pace.

I reminded myself that I had two more rotations of this sprint, and not to put it all out on my first run lap, or I would completely run out of gas. I sighed as she and her guide passed me smoothly late on the run lap in frustration, but smiled also to know that I was still within the sightline of her and could perhaps catch her again on the next bike lap.

The transition went so smoothly that I actually got out before Patricia and her guide and Mike was ready to rock the bike again. He helped me do some deep breathing to get the wheezing under control, and we gained back more than a minute lead again. I was having the time of my life. I knew that the run would yield the same result, but became more confident in my biking skills that at least I could keep myself in the mix as a contender. I had my fastest transition from bike to run on the last lap, and my fastest run lap thanks to John carefully monitoring my breathing and pace into the finish line. We were bested by only 30 seconds; a major accomplishment!

After our duathlon, Mike took me for a tour of San Diego, including a drive along the coast, coffee overlooking the swimming seals, watching the paragliders take off from the cliffs, and delicious Mexican food with his sweetheart Andrea, overlooking the sunset. It was a magical end to an amazing weekend. I feel so blessed to have been in the presence of and to learn from these great coaches, mentors, and other athletes who all want to see us get to the finish line and achieve our goals. I cannot thank the Challenged Athletes Foundation, the coaches, my guides and the volunteers enough. Elvis and I hope to make you all proud this year at the National Championships and to take each and every piece of information and advice and put it to good use. And to all the challenged athletes that I trained and raced with this weekend, THANK YOU for sharing your stories and allowing us to be a part of your journey.

 

 

 

I am a Para-Triathlete Officially!

I have no idea how to put into the words the flood of feelings that I’m experiencing right now.  I’m at the 8 hour mark after finishing my very first triathlon as a Visually Impaired Athlete, and I’m just buzzing- with adrenaline, exhaustion, joy, incredulity, gratitude, and a sense of awe.  NEVER five years ago, when my diagnosis was made horrifically clear would I have imagined this day.  Never would I have imagined that my impending blindness would actually open me to a whole new culture, lifestyle and group of amazing friends from such a diverse and wonderful group of people. 

My most recent of 11 eye surgeries was back in August of last year, only ten short months ago.  The chronic pain, multiple follow up appointments, and stress took a major toll on my body, leaving me with Addison’s Disease, (a malfunctioning of the adrenal system, and Hashimoto’s Thyroiditis, where my metabolism simply shut down.  A 45 pound weight gain in only three short months left me depressed, and feeling hopeless that my life would return to normal.  Because of the weight gain, and a broken foot, my exercise was strictly limited.  I couldn’t bike or run with the ankle, and I couldn’t swim because I couldn’t run the risk of infection or injury to my eye.  I felt trapped in a body I didn’t ask for.

An ‘Aqua Fit’ class at the local YMCA was the beginning of a life-changing event for me.  I could ‘jog’ in the deep part of the pool without getting my eyes wet or needing goggles, and I could wear a belt that kept the impact from my legs!  Perfect!  After dropping the first 8 pounds in the pool, and getting stronger on my foot, I snuck upstairs at the Y to the spin class room.  There I started slowly cycling 20 minutes a couple times a week while the classes were not in session, so I could embarass myself in private.

As my spin sessions grew longer, and my fitness began to slowly come back, I was brave enough to try a full hour spin.  I felt like I might expire then and there, but I was doing it.  I happened in on a Saturday morning class, and was absolutely stoked that my favorite instructor from New York Sports Club had joined the team at the Y, and couldn’t wait to start sweating to her great energy and fantastic music. 

Quickly the weight began to come off, and I crossed the 10 pound threshold.  I was going to do this if it killed me.  Through the power of Facebook, I met a woman who works for a veteran’s advocacy group called Team RWB who specializes in guiding visually impaired and blind athletes all around the country.  I wanted to start running with someone, but was afraid that no one would know how to help me as well as Elvis, my guide dog could.  Caroline was from New York City, and suggested we meet up at a local veteran’s fundraiser for a spin-a-thon, where she could introduce me to some local RWB athletes that might want to help.

I met a passionate woman named Laurie Hollander, the co-founder of Help Our Military Heros Charity, who has two sons in the military.  The event was so incredibly inspiring, as I got to meet combat wounded veterans who were being given their freedom back thanks to the power of exercise with adaptive technology, and the handicap adapted vans that this charity helped buy for them.  I was hooked.  I had to meet more guys like this and help however I could.  They were amazing!

I started spinning like a mad-woman and tried my first attempt at laps in the Y pool with special goggles to protect my precious new glaucoma valve that had just been surgically implanted.  I re-developed an old fear of deep water that I had had as a child, and worked hard at only swimming on days that the pool was set up with shallow lanes to keep me from freaking out.  It worked, and I was suddenly swimming- first ten, then 20, then 40, then 66 laps/ 1 mile!  I told Caroline I was ready to put my money where my mouth is and sign up for a triathlon this spring.

RACE REPORT:

Caroline and her boyfriend Jared came up on Saturday, the day before the race to help me go over any last minute issues and get the bike ready to go.  We grabbed a bite to eat with my mom and headed home for an early bed after we loaded my tandem bike onto the custom roof mounted bike rack on mom’s car.  So we thought…..

The bike was a generous gift to me by a former US Paratriathlon Director.  This tandem cycle has been to two Paralympics and is more than 30 years old.  It is an amazing piece of equipment of which the guys at the bike shop are in awe.  As we sat down to take the front wheel off the bike, it became painfully clear at 9pm in my dark condo parking lot that this wheel had not been off the bike for a very long time.  It was also not planning on coming off any time soon.  Lacking the proper tools, we began calling and texting to anyone I knew locally who knew bikes or may have the proper tools.  A trip to Home Depot was discussed, but at this point they were about to close.  Dammit.

After an emergency call to my good friend Alan, we drove to his house at 10:15 5o retrieve needle-nose pliers.  On the way there, we were frantically texting other Team RWB folks and my coach to see if someone had an SUV that could come get the bike at 5:30am if we couldn’t make it fit onto the bike rack. My head was pounding, my chest started to hurt, and I was ready to lose it.   Laurie Hollander came through like a champ, and was already coming to cheer me on at the race, and offered to pick up the bike en route to the race.  Perfect!

The next morning, Laurie showed up bright and early and off we caravaned to the race in Westchester on the Hudson River.  I was nervous about the swim, but had practiced with my coach a few days prior, and felt that other than the gross brown water, I would be ok, as long as I could spot Caroline occasionally beside me and knew that the tether would keep me safe.  The drama with the bike had actually settled my nerves, as I had hopes that this was the end of my bad luck for the race, and it would be smooth sailing from here on.

We arrived early and my stomach was in knots.  The parking lot was a mile from the nearest porta potty, and Caroline and I hustled along while our ‘crew’ grabbed the bike and our gear and followed behind.  I met the race organizer, an Aussie gentleman, who I had been emailing regarding my needs for the race.  He had been so helpful in making sure that I was starting in my own wave, safely away from other athletes who might unknowingly interfere with our race by getting tangled in my tether in the swim, or getting frustrated trying to pass us on the run as Caroline and I ran side by side.  There were already hundreds of athletes there, and it was electrifying with loads of adrenaline and nerves!

The Bike mechanics were our first stop, who did an amazing job working with my troublesome front wheel, and adjusting our seat height and handlebars.  We headed off to transition, where I went through my checklist and hit the porta-potty for the second time.  The nerves were kicking in.  We walked over to the pre-race meeting where the organizer gave a great pep talk to all of us first timers.  I was incredibly grateful my swim coach had convinced me to buy a pair of neoprene booties, as we had a long walk from transition to the swim start over lots of ruts, tree roots and grass.

Watching the first swim wave head out, I stopped and realized how incredibly beautiful the scenery was.  A lighthouse jutted the shore, the sun was shining, and the outlines of the Catskills were off in the distance.  The water appeared much clearer than my swim 4 days prior, and I started to settle down.  I would be the final wave to go- with no one else in our wave but Caroline and myself.  It relieved my fear of being swum over, but I felt a little sad that I would have no one to ‘chase’.  I reminded myself that this was my first race, and there would be no chasing, just FINISH.  I also told myself that it would be kind of fun to catch people in the swim wave that left 2 minutes before me.  I could be fast in the water, so anything was possible.  Judging by some of the really beginner swimming I was seeing out there, I totally had this covered.

We waded into the water, which was surprisingly warm, although I was grateful for my borrowed wetsuit from my coach.  I reminded myself to get my face in as quickly as possible to check my goggles for leakage.  We were good.  Caroline and I had never actually practiced swimming together, so we got down in the water and did a few strokes parallel to the shore.  Done.  The gun went off.

I told myself, ‘head straight to the buoy. Trust her- she knows where the heck we’re going. Get a rhythm and be steady- just like a regular pool swim.  Let the suit work its magic to help me float, and conserve my energy for the bike and run where I would be needing it most.”  I could still be faster than most and go at a slow steady pace.  The current kept pushing me to my right and towards Caroline. I was grateful she had used my bright yellow Achilles swim cap so I could see her.  The race officials had given us a BROWN swim cap in brown water.  Not conducive for a blind athlete to be visible or have visibility.  I pulled hard with my left arm with each stroke to keep from getting pushed into Caroline.  She pulled up twice to adjust her goggles, which had started leaking along the route.  Within 15 minutes, we were out of the water.  I was a little shocked when i got to my feet and saw dry land.  Even more shocked when Caroline told me there would be stairs coming up out of the water.  WHAT?  A challenge to say the least.  I got to work right away unzipping my suit, as I knew that was going to be a challenge.  It was really snug. As we jogged hand in hand towards the transition area, we were routed up a long dark staircase to get to the park.  We laughed at how insane this was, and kept jogging as my stepfather and coach and mother cheered us along. 

I gulped down some water, and fortunately got some help from Caroline getting out of my wetsuit, which was stuck on my timing chip on my left leg.  Great.  We grabbed our helmet, shoes, glasses and my bike and headed out of transition, which no one seemed to know the way out of.  We yelled at a couple of folks to help and they finally pointed us out.  A little stressful, but we were clear. 

Once we clipped in, we wound our way out of the park, and into the town of Sleepy Hollow NY.  Police had closed some roads and were stopping traffic for us as we flew around the first series of pretty tight turns.  One was so tight, we saw a guy go flying into someone’s yard!  Laughing, we peddled on.  A fellow competitor had warned us that the course was 5 miles uphill , then 5 miles back down.

Not 5 minutes into our ride, we were on the first decent sized hill, and our chain suddenly came off.  Crap.  So much for that bad luck running out last night. We coordinated clipping out of our pedals, and worked on getting the chain back again.  Dammit.  It slipped again.  Caroline rides competitively, so mechanics are nothing new to her.  I felt confident she would get it working again.  After the derailment, the bike began to skip gears any time we tried to use an easier gear.  We decided to stay in the hard, tougher gears, and just figure it out as we went.  Man I was grateful at that moment for my strong pilot!

We were getting frustrated as the climb continued, and the bike just kept skipping around from gear to gear.  It made it incredibly hard to push the chain as hard as we needed to climb.  So I did what I do when I get stressed.  I laughed and I prayed.  “OH PLEASE dear lovely bike of mine, PLEASE help us!  Please let us finish this race!  I LOVE you bike!  Oh BIKE! you’re the BEST!  I promise to give you love and attention and a SPA DAY at the bike shop when we get back!  ANYTHING for you!  Just PLEASE let me finish this race!  PLEASE! I Love you bike!  you’re the BEST!”  Caroline and I began to laugh.  We were going to DO this!

Well, laughing and praying work, because the bike started skipping less, and behaving more.  I crossed my heart, and got pumped as we began to pass people.  First one, then 4 , then 6.  It was a pretty amazing feeling.  I felt invincible!  I knew the run was going to suck, so I wanted to make up as much time on the bike as I could.  Around mile 8 we began to have a series of tight turns- no easy feat on a bike that is as long as a limousine.  As we came barreling down on one street, it appeared that we continue straight.  However, two volunteers were standing in the middle of the road chatting, oblivious to our impending collision.  We began to shout at them.  “WHICH WAY?”  To which they just stared!  Again, louder we yelled.  Suddenly, right before we missed the turn, they pointed to Caroline.  We wooshed by their bodies, and narrowly missed a street sign, and cursed out loud.  “HOLY SHIT”, said Caroline.  “What the hell was that?”  She said she had never seen an incident like that in her racing career.  These people were practically asleep at the wheel.  We agreed to be vigilent and slowed down for the upcoming series of tighter turns. 

As we rolled into the bike finish, I could hear my family shouting our names.  I was beaming.  We did it, and the ornery bike agreed to let us finish.  I saw Elvis wagging close by and smiled again.  This was amazing.  I love him, but there’s nothing like having your hands totally free to just run, bike and swim to make you feel independent again.  Elvis gave me my life and my freedom back, and Caroline was making me fly.

We dashed into transition and it felt fast.  Bike shoes off, run shoes on, visor and race number on, and off we jogged to the exit.  We were laughing the whole way.  I realized very quickly how critical Caroline’s guiding skills were going to be on the run. 

The run began on a grassy area under the shade of a grove of old pine and oak trees alongside the Hudson River.  Shade and running for blind people is not helpful.  While the temperature was lovely in there, it was going to be one horrific stumble after another.  I began to doubt myself.  At the first big tree root, Caroline grabbed my arm.  We had an awesome elastic running tether to connect our wrists, but in this hairy situation I was going to need a little more help.  I lifted my knees and toes up high, and pranced through our little forest run. Phew!

We then continued to a concrete pier, which zigged and zagged its way out to an old lighthouse.  There was a tiny metal footbridge to get out there, only wide enough for people to run single file.  We were laughing our butts off at the absurdity and difficulty of this portion of the race, and I dropped behind Caroline to keep from getting clothes-lined.

Once clear of the obstacle course, it was a beautiful run along the pier by the Hudson through wildflowers and parks.  I was quickly regretting my decision not to carry water on the bike portion of the race, and my head started to pound with the 80 degree heat and dehydration. “Stupid Idiot” I thought to myself.  Well, lesson learned.  I got this.

We were desperate for water, and looking forward to the water station.  the first was barely a sip of water.  We told ourselves to tank up at the next one.  Well the next station was OUT of water! What?  OUT?  They handed us a precious cup of ice, which I promptly dumped down my sports bra to cool off.  My knee began to protest after the challenge of the slipping gears on the bike, and I wondered if I could finish.  The answer was absolutely.  It would be silly to stop now.  The knee could wait.  I focused on my form, attempting to lean forward and take short strides to keep my momentum steady.  I felt good.  The pace was comfortable, and my breathing was ok despite the dryness of my throat.

All along the route people shouted for us, saying, “Great job! or “Way to go”!  It felt amazing having these other athletes take the time out to urge me on, and I felt amazing and so lucky to be there and have this moment.  Caroline started talking more to me as I think she realized I was fading mentally.  She suggested that once we hit the grass, let’s turn on the sprint.  I wondered if I had it in me.

As we rounded the final turn to the grassy finish line, I knew I did.  My family, friends, Guide Dog, and hundreds of other folks had gathered there to bring us in for our epic moment.  The smile that had faded at the empty water trough came back ten-fold. I was about to be a triathlete.  And a darned fast one at that.  Caroline said, “when we get to the orange, hit it girl!”  Another gear that I didn’t know existed came out.

I grabbed her hand for both moral and physical support (the grass was still full of tree roots) and held it tight.  The crowd roared as we came down the finish shute.  This was all for us!  Oh my god!  We crossed the line, our hands held together high in the air, and I nearly stumbled. Not from exhaustion, but from relief and joy and disbelief.  Instead, I grabbed Caroline and gave her the biggest hug, holding on until I felt I could stop the tears from flowing.  In typical Amy fashion, I started to laugh. 

The finish line volunteers laid our medals on our necks, and I was greeted immediately by one very happy Labrador, ready to serve and with a huge supply of congratulatory kisses.  My mom, Rick, friends Jared and Laurie were all there to welcome us back and give a big hug of congratulations.  My coach came by for a high five, and photos of me and my fellow Greenwich CT triathletes.  OMG- I just said the word triathlete!  Oh YEAH!?  That’s ME!

I’ve never had a harder time holding back tears.  The race director presented me with an award, even though I wasn’t being timed against other para-athletes.  He even insisted on doing it as the first award of the ceremony so that everyone in the entire race could be there to cheer us on and help celebrate.  I was so grateful for the hundreds of people who watched Elvis, Caroline and I go up to receive that award.  It meant more to me than he’ll ever know.  As it turned out, we put in a pretty awesome time.  We passed people on the swim, bike, and the run.  It felt amazing to blow past people even after being started two minutes after the very last competitor had gone out on course.  1:34 was the official time.  We took a peek to see what that would be against my age group of 30-39.  16th place!  Hey- I’ll take a top 20 finish for my first tri!  That was like the cherry on top of the sundae!  I was just shooting to have a safe, fun, easy race- to finish fast was simply intoxicating to feel. 

For the first time in 5 years I felt STRONG and Able-bodied.  Not disabled.  Not Visually impaired.  Not ‘less than’ or ‘broken’.   I felt alive and like I could fly and be fast.  What an amazing feeling. After 5 years of surgeries, chemotherapy, a new guide dog, changing jobs, moving and heartbreak, this was absolutely one of the greatest moments of my life. I cannot think of a better person than Caroline Gaynor to share it with. 

I am Amy Dixon, and I am off to do my first Olympic Distance Triathlon in 5 weeks in NYC!  Go Team RWB and Team Achilles!  My name is Amy Dixon, and I am a TRIATHLETE!