Blind Travel

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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.

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Paralympic Cycling Camp Part 2

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“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

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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!

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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

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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

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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

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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

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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