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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Race Day (Pan Am Tri Championships Part 2 of 3)

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Caroline and I stood overlooking the canal behind the Marriott, assessing the placement of the bright orange buoys in the distance.  “I think they’re in a different spot than yesterday,” she said, sounding concerned.  One of the International Triathlon Union Officials was within earshot.  “We’re in the process of moving them back now with our Sea-Doos.  They were moved for this morning’s Pro Race.” Caroline sighed, “Phew!  I was worried!”  Dozens of disabled athletes, assistants known as ‘handlers’ for the prosthetics and wheelchair athletes, and coaches milled about on the hotel’s patio overlooking our swim start for the Pan American Triathlon Championship.  Athletes chatted nervously about the heat, the layout of the bike course and its rather complicated tight turns, and the water and aid stations for our run. 

 

The minutes ticked by, as the sun got higher and higher in the Texas sky.  I was scheduled to start at exactly 10:04:16, due to a new ruling by the ITU that required athletes with partial sight like myself, categorized as B2 or B3 athletes, to give the B1 or totally blind athletes a 4 minute and 15 second head start.  Patricia Walsh, the current reigning national champion athlete was a B1 athlete, so catching her with that kind of deficit to start would require a miracle, AND the perfect race from me and my guide for all three phases of the triathlon, Caroline Gaynor. 

Our start was now delayed by several minutes due to the long lines we had to navigate to check in our gear to the transition areas where we would keep our bike and run equipment for the latter portions of the race.  Each piece of equipment and uniform had to be measured and photographed extensively by the ITU officials as part of the rules, to be sure each athlete and guide was compliant to the complicated set of new rules made for the upcoming Paralympics in Rio, and Paratriathlon’s debut at this event.  It was a bit disorganized and athletes waited, growing impatient by the second, to drop off their things and get ready to hop in the muddy canal waters. 

We were allowed a quick practice swim, where Caroline and I debuted our new swim tether, borrowed from World Champion Blind triathlete Aaron Scheidies, who was such a great friend and ambassador to the sport of triathlon.  The tether was far superior to the one I had been using, as it fit perfectly around our hips, where it connected me to Caroline by a one meter length of elastic cord, that was nicely out of the way of our arms while completing a full swim stroke.  Caroline swims on my right hand side during the race, calling out verbal commands to navigate me, or allowing the tether to keep me in a straight line and on course.  Mine had been in the way, fitting too snugly and higher up at my waist.  It was a total game changer. 

 

We opted to wear our wetsuits, given the 80 degree temperature of both the air and the water.  Although we ran the risk of overheating from the thick neoprene at these elevated temperatures, it would give me a huge advantage over athletes that chose to go without, lending buoyancy and speed.  After the announcer read our names aloud, “And representing the United States, Amy Dixon!” Despite the hot Texas air and my furnace-like wetsuit, my body was immediately covered in goose-bumps.  I did everything I could not to get choked up.  I had read an article recently about the science related to becoming emotional either prior or during a race.  It would only sap my much-needed energy and mental focus.  I needed all the help I could get.  We lowered ourselves into the canal, gave each other a last minute, “I love you” and adjusted our goggles to do battle. “BEEP!”

 

I focused on long, smooth, elegant strokes in the water, imagining my hands like a platypus, grabbing as much water with each pull of my arms and shoulders as my body could leverage.  I focused on keeping my chin down, staring into the muddy, red-brown darkness below, and looked to my right with each breath for Caroline’s white swim cap beside me.  My body rotated like a pendulum, twisting effortlessly through the water, driving constantly forward with my hips to the first buoy, where we would turn sharply right and head for the swim dock at the finish line.  At one point, I noticed another team to our right over Caroline’s shoulder, and my confidence soared.  I knew that while I wasn’t swimming my fastest in order to save some gas for the tough bike course, I was definitely gaining on the leaders who had their 4 minute head start. 

Suddenly, the carpeted stairs leading out of the water appeared in my pinhole of remaining vision through the darkness.  Someone grabbed my arm to keep me from slipping, and I heard Caroline shout with excitement, “We almost caught Patricia!  Amy, you’ve GOT this! Nice swim!”  I smiled as we started jogging in bare feet on our tip-toes to the transition area some 100 meters away in the dark parking garage.  I could hear Kate, Shelly, and Addie shouting my name over the barricades.  “Go Amy!”

 

The garage was black.  Pitch black.   I easily stepped out of my wetsuit, grabbing my helmet, sunglasses, race belt and inhaler, then put on my bike shoes.  I fumbled extensively with the complicated clasp on the shoes, and cursed to myself that I had purchased such difficult shoes to fasten for a person with limited vision.  At least they were white, so I stood a fighting chance of finding them in the dark.  Caroline grabbed the bike from the rack, and we trotted on slippery bike shoes out of the garage, into the blaring Dallas sunlight.  People screamed our names, and “Go USA!” as we clipped into our pedals and took off up the first incline. 

 

Shortly into the first kilometer, I found myself panting from adrenaline and exertion.  19 Kilometers more to go, and it would be tough.  After about 5 minutes, the resistance of the pedals increased dramatically and I tapped Caroline’s back, positioned in the pilot position of my tandem bike in front of me, and asked her why we were slowing down.  “Hill!” she shouted against the air rushing beside us.  “This is NOT a flat course.  It’s a false-flat. Dig in Amy.  We’ve gotta work!”  Caroline then started explaining to me where we were on the course in relation to our competition.  “Patricia is about half a mile in front of us, and we’ve already passed the Brazilians.  The Canadians are back there too.  Keep on the gas, girl.  We’ve GOT this.”  I smiled, and patted her on the butt like a good horse.  “Awesome Caroline.  Just Awesome.  Let’s go!”

As our one-piece suits dried from the heat and breeze, the sun began its torture on our backs and faces.  I adjusted my helmet to allow for better airflow and quickly reached for my electrolyte-infused water.  As we completed our first 10K loop, the crowd increased in size near the start/ finish line, and the noise was deafening.  “GO Caroline!  Go Amy!” we heard at least a dozen times.  We nearly missed the sharp U-turn thanks to an official, supposedly directing the athletes in the race, who wasn’t paying attention as we approached at great speed.  Caroline is an expert cyclist, and handled the bike beautifully, braking with great force, and hitting the gas hard as we hit the apex of the turn.  The bike leaned sharply, then righted itself.  “Rock star!” I shouted at her as we sped off for our second loop. 

 

My legs began to scream at me.  Lactic acid was building with each rotation of my bike’s crank shaft.  We were riding in a big, heavy gear, trying to maximize our speed with each stroke, which was the exact pace Caroline and I had discussed in our strategy meeting on Friday.  I settled in to suffer.  As I tried to forget my pain, the silly children’s song, “I’ve been workin’ on the rail-road, all the live-long day,” came into my head. “ Why?” I wondered, staring at the shadow of our feet, running along the pavement below us in a rhythmical, metronome-like pattern.   

 

I opened up my race belt and pulled out an energy gel, much like a gummy bear, and chewed it while trying to get air into my taxed lungs.  “Don’t choke” I said to myself.  Within seconds, the gel came up.  I reached down for my water bottle in a desperate attempt to wash it back down, but my body said no.  It was in the ‘eject mode’, not ingest mode.  I shook my head, smiled at my misfortune, and pedaled harder.  For the final mile, my head was tucked tightly by Caroline’s tailbone, trying to remain as aerodynamic as possible.  As the noise grew near the finish, I started going over our plan in my head.  “Don’t forget to leave your helmet on until the bike is racked,” I said aloud, although I knew Caroline had already memorized this important rule. If we unclipped the chinstrap before the bike was put away, we would be immediately disqualified. 

 

We jogged alongside the bike after dismounting, racking it again in the dark garage.  Caroline handed me my sneakers and visor, and we quickly swapped our bike shoes off, tethered our wrists together by a spare shoelace, and headed out on the run.  I was smiling from ear to ear.  I knew we were in second place, and it was the most exciting feeling of any race I had ever run.  My enthusiasm and excitement came back to bite me quickly.  I looked down at my watch, noticing that I was running an 8 minute, 30 second per mile pace.  While this would be a great last mile pace for the race, leaving on the start of a hot 5K road race in Texas at that pace wasn’t smart.  I felt good, so I decided to just go with it, and hope that I would maintain this pace or get even faster on my second lap.

By the first aid station at the 1K mark, I was hyperventilating.  We decided to walk a few steps, grab a cup of water, then go back to an easier pace until the 4K mark, and hit the gas again.  Then came the first hill.  “My feet are so…..HEAVY” I whined, gasping for air. 

TO BE CONTINUED!!!!!  

If you want to help Amy and her Guides compete at World Championships and National Championships this season, please click here for a TAX DEDUCTIBLE Donation through the USA Blind athlete’s Association.  THANK YOU!

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

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

Paralympic Pursuits at the Olympic Training Center- part 1

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“Up on two, back on one, forward on Go,” I repeated to my tandem cycling pilot as the countdown started.  The announcer began his countdown.  “Fifteen,” he shouted into the microphone.  I rubbed Lindsey’s back with my gloved hand.  “We’ve got this girl.  Just like we practiced.  Same thing, but faster.” “Love you!” was her muffled response over the cool mountain air of the Velodrome.” “Ladies, that’s Five, Four, Three, two, one- BEEP!  The man holding our bike upright released his grip on our bike tire and seat-post.  The bike was in the heaviest gear possible for the maximum amount of speed on the track, forcing us to bear down with every ounce of our combined nearly 300 lbs on the pedal.  “Woosh” went our deep exhale as we breathed the air into our strained quadriceps muscles, pushing with as much torque as our bodies could manage. 

It went dead quiet.  The cheering spectators and coaches were instantly muted.  The bike sped silently forward and I closed my eyes, leaning forward, pressing my head against the back of Lindsey’s jersey.  “Breathe, Amy, just breathe” I thought to myself.  As if emerging from a submerged concrete bunker, the world came flooding back- light; flickering, the track a grey blur with a thin red line below us.  “Go girls!” I could hear Jimmy screaming from the infield of the track. “Nice work ladies” I heard in quiet praise from Coach Mike as we passed the starting line for our first hot lap.  “Eight more,” I thought to myself, and I began to wonder how I could possibly hold on. 

My breathe went from loud, powerful, forced exhales to ragged, desperate gasps.  “Fucking asthma,” was all I could manage to think of.  “Don’t panic, just breathe” I begged myself, remembering Mike’s advice and wisdom that asthma can be sometimes more mental than physical.  I could do this.  I forced a labored, searing breathe from my lungs. My legs were nearing the anaerobic phase of the sprint, left spent with no oxygenated blood to keep them supplied at this pace, with lactic acid building by the second.  “Strong; you are STRONG” I pleaded with myself, looking for that ‘other gear’ I knew existed somewhere in my trained athlete’s body.  With that mantra repeating on endless loop, the final lap bell rang, “Clang!”  “Go Amy and Lindsey!” I heard as we crossed the start line at lap 8 for our final push. 

Blood.  I tasted blood.  That distinctive iron-infused, dry ,tannic, meaty feeling like having your teeth cleaned at the dentist.  I started to panic.  “Why blood?” I wondered to myself. Was this dangerous?  What could be happening?  I went deaf again. I couldn’t feel my legs anymore, but I was aware that they were moving; WE were moving- nearly 40mph on the Velodrome at the US Olympic Training Center in Colorado.  I wondered if this was the moment I would pass out, and who would contact my family if I ended up in the hospital after the resulting horrific crash that was about to ensue. 

I was snapped back to the present when I felt the pedals suddenly become slack and Lindsey slumped forward, mumbling, “I have tunnel vision.  Don’t worry.  It’s ok.  I have the bike,” she gasped, breathless.  I reached forward with my shaky right hand, rubbing the small of her back.  “I love you! You’re amazing!” and I fell forward, resting my head on my forearms, trying to reach for the breathe that was escaping my lungs.  “I taste blood,” I wheezed, between deep, deliberate forced exhales.  “Why do I taste blood?”  “Me too,” Lindsey offered.  “That was hard.”

Training at the United States Olympic Training Center in Colorado Springs is a dream only a handful of athletes ever get to experience.  Being chosen for the Paracycling Development Camp by the United States Association of Blind Athletes (USABA), is an honor and privilege I wasn’t prepared to accept.  Initially I was prepared to say no, feeling the airfare and cost of the camp was prohibitive for one unemployed disabled triathlete (meaning me) and that it would simply have to wait for another time.  When Pam Fernandes, the head of the camp announced to me that a fellow Team Red, White and Blue Teammate who I knew via Facebook for guiding my blind friend in a recent Ironman triathlon had been selected as my pilot on the tandem bike, I jumped at the chance.  Lindsey and I had spoken via Facebook Message regarding potentially racing together this season in triathlon.  While ParaCycling was not in my wheelhouse, I figured I’d give it a try, and if nothing else, it would make that leg of my triathlon even stronger going forward.  I owed it to myself and my season to give it a fair shake. 

Arriving at the OTC (Olympic Training Center) was not only like heading to sleep-away camp, but like going back to college.  We would be living in dorms, eating from the cafeteria, and have a full schedule each day from 8:30 am to 8:30pm, with lights out by ten.  It became real the moment I hopped onto my connecting from Dallas to Colorado Springs airport, and was seated next to one of my many facebook idols, Miss Kathy Felice Champion, a blind triathlete, motivational speaker, and combat wounded veteran.  She and her fairly new Guide Dog, a black Labrador named George were headed out to the same camp and we finally had the chance to catch up in person.  I knew my week was about to become amazing. 

At the airport, we were on a long, flat desert plain, with huge snow-covered mountains to the west.  As we stepped out into the warm sunshine, we were greeted by a uniformed USA Olympic Training Center employee, who helped us with our gear as we loaded into the OTC’s shuttle bus.  We met two more blind athletes, and one sighted tandem pilot, and got to introducing ourselves on the ride to camp.  We pulled through a security gate, where the driver scanned her pass with the guard, and stopped in front of the Athlete Center, our social center for the next seven days.  After posing for some photos in front of the OTC sign and the American flag, we each received our security badges and photo IDs, then headed to our dorms.

The OTC was a former Air Force military base, with long concrete three-story buildings, housing hundreds of soldiers, the perfect solution for the great many athletes that resided here both full and part time.  As I entered the long corridor after scanning my ID, I heard my name from a tall blonde athlete at the far end of the hallway, “You’re HERE!!” Lindsey shrieked, as I dropped my bags and my guide dog’s harness handle and we ran to each other, like long lost family after months of missing each other.  We hugged tightly, and started giggling and chatting like old friends.  But we had never actually met.  But I knew her instantly.  Lindsey gave me the grand tour of our room, helping me unpack each carefully rolled pair of cycling shorts, jerseys, and sneakers that packed my 46 pound suitcase.  My guide dog Elvis gulped down two full bowls of water after our long journey, and we sat on the bed, gossiping and chatting like we had been doing this our whole lives. 

Pam Fernandes, our blind camp director and her guide dog Cameron appeared in the doorway.  “Welcome Ladies!” she heartily announced.  “After you’re settled in, I want you to head next door to the bike room.  Check on your bike, get your pedals on, and we are going to meet in the courtyard at 2pm for a shake-down ride, ok?”  Lindsey and I jumped up and down on our beds. “OK!” we said in unison.  I scrambled, fingers shaking to get on my gear, tightening the Velcro on my cycling shoes, then headed out the side door to the bike storage room.  There I met Dan, who would become the single most important person (other than my pilot for my bike) of the week.  My beautiful borrowed $10,000 CoMotion Tandem bike had arrived safely.  She had been fully assembled by Dan, and Lindsey and I set to installing our pedals and seats on the bike to our desired length and height.  Anxious to mount up, we straddled the middle bar for our first effort as a team.  We had to communicate which pedal we wished to start with on the upstroke, and decide in advance what our key words or phrases were going to be on the bike. 

Riding the tandem is extremely difficult, because for the blind athlete, you can’t see where the pedals are to lock your cleat into them, nor can you anticipate stopping, sharp turns or obstacles ahead.  Everything is either verbalized or completed by feel.  You have to have complete trust and faith in your pilot’s abilities, and being the ‘Type A’ personality I am, this has been no easy task.  Stopping and starting are really the toughest part of tandem riding.  You have to click out of your pedals at precisely the same moment, and catch yourself, your partner and the bike on one slippery, metal spiked shoe, in a smooth, controlled motion.  This takes practice, and with our first push-off, “Three, Two, One, Go!” we were off.  Lindsey was very skilled as a pilot, having guided my friend Tina to a strong Ironman finish, so I had complete confidence that she would ultimately take care of me and my beautiful loaner bike. 

I was in bike heaven.  Typically, when I race, I’m one of only 3 or 4 blind athletes.  Here were ten seriously talented blind athletes, mostly veterans, all biking in a tight circle on the courtyard, each riding magnificent pieces of equipment, costing more than many cars.  A gentleman with rectangular glasses, spiky ‘California Cool’ hair, and a deep tan called the group over.  “Riders!  Eyes and ears!”  he shouted, as we chatted noisily with each other.  After the group settled, the man introduced himself as Michael Heitz, the US Junior National Cycling Coach and our mentor for the week.  To his right was a gorgeous, muscle-bound, tan cyclist, who straddled his sweet Felt-branded road bike.  His name was apparently Matt.  Lindsey and I pinched each other, as we both quietly giggled and blushed at the same time.  We would be riding what was known as a ‘crit’ or criterium course this afternoon, used for bike racing in a separate area of downtown Colorado Springs, a short few miles off campus.  As we started off, two by two, each of us let out a “Whoo-hoo!” and we were off. 

I focused hard on relaxing my arms and upper body, trying with all my willpower to convey to Lindsey my complete trust in her skills on the bike.  I knew stiffness on my part made her job even more difficult, and that I simply needed to pedal hard and remain motionless and fluid.  And then we fell.  It happened so fast.  We were at the stoplight headed towards the course, and my left foot got stuck in my pedal that was adjusted too tightly to my cleat.  The bike listed sharply to the right, and we took out our neighboring cyclists, my elbow landing hard on someone’s thigh.  Embarrassed and mostly unscathed, we righted ourselves, checked on our confused blind neighbor who unfortunately didn’t see us coming, then remounted.  Each of us took a deep breathe.  “You ok?” Lindsey shakily asked.“Yup.  Let’s get that left pedal up and push hard when the light changes.  Ok, 3, 2, 1. Go”  The bike propelled slowly forward up the incline.  I looked down to see a spot of blood on my shorts, and wondered if it had come from me or my neighbor’s unsuspecting leg. 

That night, we showered and headed for our first meal together.  The dining hall was elaborate, with motivational quotes posted along the rafters and floor-to-ceiling windows looking out over the entire complex of gyms, shooting ranges, pools and the hall of fame.  It was difficult not to point at the other athletes, as both Lindsey and I were a little awestruck.  There were weightlifters, wrestlers, Volleyball players, Pent-athletes, figure skaters, and cyclists all living on this incredible campus.  There was no shortage of eye candy for two young blondes women to ogle all week.  We laughed upon entering the cafeteria.  McDonald’s and Coca-Cola are the two largest sponsors of the US Olympic Team, and to see those two brands so prominently displayed in a cafeteria filled with athletes on strict training diets was ironic, to say the least.  We were relieved however, once we saw the giant buffet and grill that greeted us.  We could literally have anything we asked for, and it was simply overwhelming with all of the choices.  We quickly discovered that the only things Coke and McDonalds supplied were the beverage fountains and coffee machine.  It was just too weird. 

After grabbing our trays, we meandered over to a large table filled with both sighted and blind cyclists.  This would be our group for the week, and we began with the introductions while dining, each of us excitedly talking about our first ride of the week, eager for what was yet to come.  Dinner was followed by a meeting in one of the many classrooms located in the aquatic center.  Lindsey and I both squealed as we passed the gigantic pool, pressing our faces up against the glass, eager to dive in and check it out.  For now, it would have to wait.  Although we are both triathletes, Pam had urged us to put our running and swimming on hold for the week and focus strictly on cycling.  They were investing a lot of time and money into our coaching, and wanted us to reap the maximum benefit, with the possibility that we could then try to meet the time standards to become part of the US ParaCycling Team. 

Our meeting formally introduced each of the pilots, coaches, mechanic, athletic trainer and blind athletes, known as ‘stokers’ due to their rear position on the bike, where we ‘stoke’ the power to the equipment.  It was fascinating to hear why each and every one of the athletes were interested in the sport, and their background.  Most of them were combat wounded veterans or suffering from Retinitis Pigmentosa, an eye disease with a similar progression to mine.  Even more impressive were the resumes of the pilots.  Some had been to the Paralympics, others were Army Cycling Coaches, some were engineers who had a passion for tandem bikes, and others were there to simply learn a little more about helping blind people pursue competition.  Little did I know how each and every person in this room would forever change the course of both my life and athletic career. By Friday, I would become a Para-Cyclist.

IF YOU WANT TO HELP LINDSEY AND I GET TO A NATIONAL CHAMPIONSHIP THIS JULY AND MAKE TEAM USA, PLEASE HELP HERE:

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

 

 

 

Meeting Super Heroes

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“What IS that? Is that BBQ?  at 8:30 in the morning?  Really?  I LOVE this city!  Yay for Boston!” I shouted as we trotted up the next incline.  While I couldn’t see the beautiful city before me, the sound of 10,000 fellow runners crowded into one narrow street, the gentle, ‘thump, thump, thump’ of their perfectly padded peds acted like my own metronome in my head.  I counted my steps aloud, “Sixty two, sixty-four, Sixty-eight”  I was near the perfect cadence of 90 steps per minute, working hard on my ‘turnover’ as running specialists lovingly refer to our footfalls.

 

Christina Aguilera belted out the song ‘Burlesque’ into my singular earbud, signaling to me that I should be approaching the final mile of our race.  Marc, my sighted running guide begged the question, “are you ready for some speed?”  “Heck yeah!” I immediately replied.  “But how?”  Is there room to run?”  As if in an ironic reply, my ankle suddenly rolled sharply right into a deep pothole.  “DAMMIT!” I shouted.  “Sorry Amy, I’m so sorry- it came up so fast, I didn’t have time to warn you.”  I felt the blood rushing to my foot, the tissues increasing in warmth and discomfort.  “Don’t worry, it happens.  And hey, I’m almost done, and I’m still vertical.  That’s a major win in this crowd” I laughed.  I decided to ‘walk it off’, actually ‘run it off’ and pushed on with my race.  I wasn’t going to let a silly ankle get in the way of a great race day.

You see, I was blindfolded for the Boston Athletic Association 5K in a sub-set of the race known as the Blindfold Challenge.  Of the 10,000 runners in the race, 300 of us had chosen to wear blindfolds and run with a guide to raise money for the National Braille Press, a non-profit that helps young blind students and adults achieve braille literacy.  While I have 1% remaining of my vision, I do rely on it quite heavily, and do really well with the little I have.  This challenge was exactly that- a challenge.  For the first mile, we were packed in like sardines, standing shoulder to shoulder with our neighbors, literally running in place.  I realized quickly that this would not be much of a race, so much as a “don’t try to fall on your face and go for a nice, social jog with a new guide and volunteer.”  According to my guide’s Garmin GPS watch, we moved at a snail’s pace for the first mile.

Mile two allowed us to stretch our legs a little more, but real running was not possible.  I could hear the music and bass pumping from adjacent runner’s earbuds, and wondered how on earth they were going to hear Marc’s voice instructing them to move out of our way.  His booming voice, “Blind Runner, move right” is a sound I will hear in my sleep for days.  I knew that there were crowd barriers on either side of the street, and could hear spectators banging their fists against the metal, creating an energizing, and pulse-pounding buzz.  “Go blind Runner!” people would scream as we trotted by.  “Yay Achilles!” I would hear as they read my brightly colored fluorescent yellow shirt.  “You’re almost there” was a cheer I really couldn’t stand.  Never say that.  It’s a farce, number one, and number two, it never makes you feel better, because you know you’re really not.  I may be blind, but mathematically challenged, I am not.

Marc’s instructions were clear and concise.  “In 50 feet, we’re headed up a slight incline, then turning a hard left.  It’s going to be a tight squeeze, so drop behind me a little.”  We had literally met that morning, and had been teamed up by ‘Team with a Vision’ chairperson and event organizer extraordinaire, Mr. Josh Warren.  Josh had matched Marc and I up based on my pace and we had spoken on the phone about my guiding preferences and what I could and could not see.  We were tethered at the wrist by a stretchy piece of shoelace, and he was doing great.  I was nervous for the first mile and he did a great job of keeping me safe, and keeping the crowd at bay.  Just after our final turn on the course, before a  long straightaway, some guy jumped directly in front of me, causing me to land on the back of his heel hard.  “Crap!” I shouted as I started to fall forward, stretching my arms outward to brace for impact.  Instead of hitting the pavement, I hit the the guy’s shoulder blades square on, and shoved him- hard.  Not only did it stop my fall and push me back upright, it was extremely satisfying.  The guy, according to my guide Marc, apparently turned around to yell at me, and saw his mistake when he read my bib that clearly stated, “Blind Runner”.  Apparently he apologized to Marc for cutting me off, then trotted off in shame.

The sun was warm and bright as we crossed the finish line triumphantly, sprinting the final 100 yards, and high-fiving as our feet hit the sensors.  I was thrilled to be racing in Boston, although this wasn’t at all the race I wished I was doing.  “Next year” I said aloud to Marc, referring to the Marathon I so desperately wanted to be a part of.  With that, we set off to locate my guide Dog Elvis, being thoughtfully looked after by another blind athlete not running today.

I had traveled from my home in CT thanks to a kind friend who was driving up to Boston and running in her first marathon.  My hosts were two of my favorite friends from my Guiding Eyes for the Blind Family.  Randy and Tracy Pierce were an exceptional couple who tackled the 48 tallest peaks in New Hampshire in both summer and winter in the same calendar year.  And oh yeah, by the way, Randy’s blind.  We were all running the Boston Athletic Association’s OTHER race, the 5K followed by several functions hosted by the Massachusetts Association for the Blind and Visually Impaired’s ‘Team with a Vision’.  This was one of their biggest fundraisers, and we were excited to be a part of the festivities.  We attended a brunch where I was interviewed by a radio show, then listened to a fantastic young blind marathoner who ALSO happened to be getting her law degree from Harvard in two weeks.  The room was filled with visually impaired overachievers.  It was like being in a fun house, where every direction you turned, someone or something incredible was right next to you.  I didn’t know who to talk to first, or which guide dog to kiss.  My friend Aaron, the current reigning National Champion and former World Champion blind triathlete was there selling his ‘C Different with Aaron’ Tee shirts to raise more money for MAB.  It was just awesome.

The marathon expo in the convention center proved more challenging than I was prepared for as a blind person.  Hundreds of thousands of folks all wanted race swag, and were determined to get into the hundreds of booths selling goods, regardless of the fact that my guide dog was in their way.  We were all  exhausted.  The highlight of our weekend followed the mental overload of the expo however.  The MAB dinner brought together more than 60 Visually Impaired athletes from all over the country.  The people I had been friends with via Facebook and phone and text and email, but had never physically met.

There were national champions, cancer survivors, Iron men and women, folks with hearing and vision loss, and those who had endured terrible accidents by careless drivers while out cycling on tandems.  I got to meet my real life super heroes, and spent the night hugging, taking photos, crying, laughing and staring at the faces of these inspiring folks that had taught me all about my new sport via social media.  Each had taken time out of their busy training schedules to teach and mentor me, offering sage wisdom regarding the sport of triathlon and how to go about training as a blind woman, when I had never in fact met a blind athlete.

My good Facebook friend David and I had made a wager back in December that whoever achieved running an 8 minute mile first had to buy the other runner some coveted Reese’s Peanut Butter Cups.  After a big bear hug and some photos, David presented me with a giant box of the super sized Reese’s BIG CUPS, a worthy prize indeed.  I gushed and got choked up that he had remembered some 5 months later.  This was indeed my new family.  I wanted to stay here for days, listening to their war stories of dozens of marathons, Ironman triathlons and riveting open water swims with giant waves, all completed without the aid of sight.

Their bravery made my heart swell, and that tiny flame of doubt I had about attempting such daunting distances immediately was snuffed out. No longer did I fear more surgeries, side stitches while running, dehydration,  getting bumped into by overzealous sighted runners, and the occasional unexpected manhole cover.   I had my own 60 person cheering section assuring I could accomplish anything I wanted to achieve in this sport.  I CAN do it. And with Giant Reese’s Peanut Butter cups at the finish line, I was GOING to do it. So, if I’m going to run Boston next year, I guess I’d better go buy a cape!   “Blind Runner, coming through!”

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.