Blind Travel


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


Bike Shopping for Blind athletes



I’m still grinning from ear to ear.  Remember the first time you rode a bike as a kid?  The first time you completed a ski run without falling?  The first time you cantered on your pony?  How about the first time you got up on waterskis?  Or when you completed a flawless “Ollie” on your skateboard as a boy?  Yeah, it’s kind of like that.

I’ve been training for the sport of Paratriathlon as a Visually Impaired athlete now for a little over a year, thanks to the kindness and encouragement of one enthusiastic triathlete and sighted guide for the blind, Miss Caroline Gaynor.  Her singular belief that people with ALL types of disabilities can complete a triathlon, led me to believe that I too could do it.  Thanks to her, after completing my first sprint distance triathlon, I signed up for my first Olympic Distance, and finished in second place.  I was hooked.

Fast forward a year, and I am training towards a spot on the US Paratriathlon Team, and headed for my first National Championship, having qualified after finishing on the podium at several races in my first season.  I have product sponsors, who keep me stocked in yogurt, pain relief gel, wetsuits, and Chocolate Milk.  I made the NY front page of the Wall Street Journal, and have been written about in three magazines, along with Fox News, the Today Show, and now have an interview as a host for a travel show for the blind.  My life looks nothing like it did one short year ago.

Generous organizations such as Team Red, White and Blue, Achilles, and the Challenged athlete Foundation have sent me to camps, helped me with coaching,provided sighted guides for races, and finally helped defray the cost of a campaign for a National Championship through grants and scholarships.  In two short weeks, I’m headed out to Colorado to train at the US Olympic Training Center with USABA for Paracycling camp.  I am both honored, and humbled in their belief in my abilities.

A blind athlete needs to ride a tandem cycle to complete their race safely.  A pilot, or captain rides the front of the bike, shifting, steering and braking as needed, and the team provides synchronized pedaling power.  A tandem is a great deal heavier than a single bike, weighing in at around 35 pounds, and can be a bear to ride up inclines.  However, on the flats and on ascents, the tandems FLY, passing bikes weighing less than half their weight.  Momentum is our friend.

I was generously given a 35-year old steel tandem weighing in at over 50 lbs last year.  I completed one race on it, and attempted some training, but the bike is fitted for two large males, and alas, the sport of triathlon requires that my guides in racing be of the same gender.  It was extremely difficult to find men to train with, and I was fortunate to have a friend with a good quality tandem to borrow his bike for the important racing events.  While it still did not fit my female pilots, it was slightly better and MUCH faster at nearly half the weight.

As the races this year become increasingly important to gain points towards the Paralympics in Rio in 2016, having a bike that fits both me, and my training and racing female partners is essential.  So off I went shopping.  The array and price ranges of the bikes was overwhelming.  A kind stranger, through the power of social media, offered to supplement my grant from CAF and to drive me to the largest tandem dealer in the country, a 3 hour drive from my home in Connecticut.

Coordinating the trip was a challenge, as the shop owner, Mel, was traveling in Europe over the weekend.  He literally hopped off the plane and enthusiastically greeted Ron and I at his home workshop and warehouse, along with his wife Barbara and Cavalier King Charles Spaniel, Bella.  Behind the doors of this modest 4 car detached garage, were more than 80 tandem bikes to drool over.  They ranged in price from $2500 to more than $15,000, depending upon the materials used in building the bike.  There were steel bikes, aluminum, Carbon Fiber, Titanium, and even Bamboo!  I was in blind girl biking heaven.

Mel measured me, and started pulling bikes out one by one.  I told him to start with the cheapest of the bikes, and that we could go up from there.  My grant would cover the entire cost of a Cannondale, but was nowhere close to touching the pricier machines in his stable.  Mel suited up, and Ron followed on his single bike as we took the Cannondale out for a test ride.  The bike constantly vibrated, and I was turned off to the ‘tinny’ feel of the suspension and lack of quickness to the bike.  It felt a little clumsy and definitely inferior.  Sadly, I knew already where this was going.  Out of my budget,,,,,

I then hopped on a nice steel CoMotion tandem.  They are largely considered one of the best bikes you can buy, and come in either aluminum or steel.  This bike was steel, but had lighter components and wheels to give it a little more speed.  It held the road nicely, and had a much more solid feel to it.  While it wasn’t as quick as my friend’s aluminum CoMotion, it was definitely a HUGE step up from the Cannondale.  Of course it was nearly three times the price at $6500.

I was hesitant to hop on the ‘Ferrari’ of tandems, as it was SO far out of my budget, I didn’t WANT to like it, and walk away disappointed.  My friend and fellow blind triathlete, Tina owns one, and I see it at all the races, where I walk up to it each and every time, and gently pick it up, marveling at the lightness of such a giant piece of equipment.  Plus, it’s pretty.  Carbon fiber leaves no seams, so the geometry and lines of the bike are impeccable.

I stood looking at the bike for a great long while.  Mel finally remarked, “Are you going to take a picture of it or do you want to RIDE it?”  The choice was obvious, but I still was afraid to fall in love.  Not only was the BIKE carbon, but it used a unique carbon BELT instead of a standard chain to drive the gears of the bike.  This thing was no joke.  We took off out of his driveway, leaving Elvis with the shop mechanic watching us anxiously as we sped down the road.  I shouted “WOOHOO” at the top of my lungs as we passed the first car.  We were flying.  Mel encouraged me to drop the hammer on the speed.  Ron had left ahead of us to take some photos, and we blew past him in a cloud of dust.  We had to stop to allow him to catch up, and when he did, we took off again.  The bike WANTED to go fast.  It was like driving that highly tuned V8 sports car, that you have to simply THINK about touching the gas, and the car JUMPS forward.  The response to your need for speed was nearly visceral and instantaneous.

The feel of the bike reminded me of the first time I skied on the fancy new ‘elliptical’ shaped snow skis.  One would simply THINK about turning, and gently bend one knee, and the skis would immediately take off in that direction.  NO EFFORT whatsoever.  The same happened with this gorgeous Carbon fiber Calfee.  The bike made everything effortless.  We rode the same route as the previous bikes we had tried.  Cornering was nimble, climbing the hills was unbelievably quick.  The flats were a breeze, and there wasn’t a SINGLE sound coming from the bike- no chain noise, no vibration, and the position it put me in felt like I could stay there for days.  My mind suddenly wandered to my goal of completing an Ironman distance triathlon.  I thought about how I would feel after riding a bike like this over 112 miles of mountains in Lake Placid.  I knew that the level of fatigue I would encounter would be exponentially less on such a bike.  I had to have it.

As we pulled back into Mel’s driveway, I couldn’t stop shaking my head.  My smile was involuntary, and I was awestruck.  I hated myself for even sitting on this bike.  I had no business looking at such a machine, so far out of my price range.  I convinced Mel to pull out a few more bikes, praying, hoping and wishing that somehow, someway, that I would prefer a cheaper bike.  That I would fit a cheaper bike.  My greatest challenge was my stupid long legs.  While I’m not tall, I do have freakishly long legs, making fitting most ‘off the rack’ bikes impossible.  To purchase a bike that is small in front for a female pilot, and a medium in the back for freak-like Amy would require a custom bike.  ‘Cha-ching’ was all I could hear in my head.

We thanked Mel after nearly 4 and a half hours of riding, testing and measuring, and hit the road home, armed with lots of great education on the world of tandem cycling and fitting.  Ron told me that we were going to find a way to get me that bike.  I was uncomfortable with the idea of fundraising, as despite my disability and health challenges, there seems to be so many more deserving friends and athletes out there, who too are struggling with a way to pay for this expensive pursuit.  Why was I worthy?  Ron and I discussed it at length, and I suppose he explained it best.  “You’re out there in the community giving back through Guiding Eyes, the Lion’s Club, Achilles, and the World Glaucoma Foundation.  It’s your turn, and people want to help people who pay it forward.  You’re that person.”  I quietly shook my head and reluctantly agreed to the notion.

Less than 48 hours later, Ron has helped me raise almost 15% of the cost of the bike through a crowdfunding website, and my local Lion’s Club has generously been accepting tax deductible donations towards this bike.  I can’t wait for cycling camp this May, and my first international race in June.  What an amazing journey I’m on, and it’s barely even started.  I don’t feel like I deserve this, but I hope to prove that I’m a worthy individual, and can make my supporters happy that they were an integral part of my success.  You can help with my amazing bike purchase here:



A life-changing World Glaucoma Week




For ONCE in my life, I’m at a loss for words.  What I have seen, experienced and been surrounded by for the past two weeks of travel would be done little justice with mere prose.  I spent a week in Florida, speaking to supporters of Guiding Eyes for the Blind, the school that gave me my wonderful Labrador Guide Dog, Elvis.  There I hosted elaborate wine tastings attended by folks of impressive means who are incredible philanthropists.  

So you can imagine my shock and the complete turnaround when I landed in Antigua, where the airport was surrounded by lush Palm trees and tropical vegetation and brightly colored bougainvillea, yet further down the road bore the signs of immense poverty and despair.  Emaciated stray dogs lined the country roads, workers waiting for the tiny mini bus to their jobs at the once-full resorts that in year’s past were packed with tourists, now hoped to at least keep their low wage employment.  Yet here, everyone had a smile and a hand-shake for me and my mom.  

You see, we were honored guests.  Optometrist, philanthropist and civil-rights advocate Dr. Jillia Bird, a household name on this island of 10,000 residents brought me here to help change the fate of an entire nation of people.  NO easy or small task, mind you.  It was World Glaucoma Week, and Dr. Bird aimed to educate and shine a spotlight on this Pandemic going on in the tropics.  Here, 1 in 10 African American adults over the age of 40 have Open-Angle Glaucoma.  This type of Glaucoma is extremely treatable when caught early, although there is no cure.  The diet of the islanders, heavy in sugar due to the prevalence of so much fresh fruit and juices, often leads to diabetes, a high risk-factor for this type of eye disease.  We were here to change that statistic, one person at a time.  

I met Dr. Bird online in my Glaucoma Support Group on Facebook.  For the past two years she has listened, laughed, cried and cheered me on through my many surgeries, experimental treatments, pain and triathlons.  So when she invited me to come speak in Antigua about my life with Glaucoma as a patient who has ‘been there, done that’, I jumped at the chance to help so many others with my disease.  

The first night was magical, with dancing, reggae and new friends overlooking Saint Kitts and Nevis from a historic fort.  The next morning, the ‘work’ began.  Jillia had organized a ‘March for Sight’ on International Women’s Day to kick off World Glaucoma Week. We were joined by more than 600 people to raise awareness for this incredible event.  There were members of the Lion’s Club, the Youth Council, Powerful Women’s group, a marching band, Girl Scouts, Medical Students, Nurses, and hundreds of others.  I had the honor of marching at the very front of the parade beside the president of the World Glaucoma Patient Association and the Prime Minister of Antigua!  My guide dog Elvis was suffering from the sudden transition from cold New England weather of 20 degrees F, to 85 degrees on the streets of Saint John’s, but he managed just fine when we returned to the start of the parade route, and dozens of children surrounded him and covered him with pats and kisses and dog treats.  Afterwards, we returned to our private beach at the hotel and hopped in the turquoise waters for a good game of fetch and a swim.  Overall, not a bad day’s work for a guide dog!

Jillia kindly set me up at the most beautiful gym called the Antigua Athletic Club.  There I met wonderful locals and ex-pats who were runners, swimmers, and yoga buffs.  I got a tour of the facility by the most handsome personal trainer, a man named Orson who had heard about my arrival.  He shared his own story of personal triumph over addiction many years ago, and how becoming a professional body builder and motivational speaker and mentor to newly recovered addicts changed his life.  We were fast friends.  The club manager approached me and asked if I had time in my schedule to speak to the kids about the sport of Para Triathlon and Glaucoma and Elvis, and OF COURSE I said yes.  I even suggested I host a clinic for the swim team.  Was I getting giddy?  You BET I was!

That night Dr. Bird, fellow Canadian Glaucoma Patient Jenia and I spoke at what is known as the Medical Benefits Scheme, which is their equivalent of a government health center.  Dr Bird gave a riveting talk about the prevalence of Open Angle Glaucoma in the Caribbean, and implored the large group of attendees to get their eyes tested.  Jenia spoke about a fascinating study she participated in in Canada, where a sensory contact lens was inserted into her eye to take a 24-hour reading of her inter ocular pressure.  And finally, I spoke about how Glaucoma may have taken my sight, but it has not taken away my quality of life, and urged the group to be active physically, be an advocate for themselves at their doctor’s offices, and to realize that Glaucoma is not a death sentence.  

One of the MANY new things I learned about Glaucoma this week is this:  Glaucoma is not ONE disease, it is a FAMILY of eye diseases, affecting many people differently.  It is NOT always associated with high inter ocular pressure as previously thought.  For MOST patients, there are NO SYMPTOMS of Glaucoma, often affecting the periphery of the retina or optic nerve first, causing the patient to see perfectly clearly although they are losing their vision to the side before it’s too late.  The only way to test for Glaucoma is to have your IOP tested once a year and a visual field exam to determine if you have any blind spots.  Having a good thorough medical history helps doctors determine your risk factors for Glaucoma.  Being black and having circulatory issues, diabetes, or migraines can predispose you to Glaucoma.  If caught in the early stages, it is extremely manageable, and most people do NOT go blind.  When someone has circulatory issues or diabetes, the TEENY blood vessels in their hands, feet, eyes, and kidneys are affected the most, causing them to die off if their disease is not well managed.  This vascular death begins the spiral of vision loss.

The following day I was on ABS TV, on a show called “Good Morning Antigua’ Talking about my journey and how the islanders can prevent this disease from taking hold of their lives.  What a difference between their studio and those we have here!  The troopers/ aka news anchors worked in primitive conditions, with water dangerously dripping into buckets next to the wires for the cameras.  I was more nervous about being electrocuted than being interviewed!  

From the TV station, we headed over to the TN Kirnon School for the Deaf and Blind, and spoke to more than 100 able-bodied students, and to the small group of blind kids.  They were fascinated by Elvis, as dogs on Antigua were generally NOT pets, but used for protection, and many were afraid to touch him. They were in awe of the fact that he knows nearly 150 words, and watched him take me carefully around the school yard, avoiding a large ditch, helping me find the stairs, and going through hand commands instead of the usual verbal ones.  One little girl lost her sight to Congenital Cataracts, and I allowed her to feel what it was like to be guided by Elvis instead of her white cane.  She was so excited by his happily wagging tail, and in shock that he could help her up the steps to her classroom.  I was in tears.  Her Information Technology teacher, Lisa Hixon, blind herself from Retinitis Pigmentosa ( a degenerative eye disease similar to mine) showed us the computers they use at the school to work with the blind and visually impaired students.  They had a CCTV to enlarge books, and the young student read to us a book about her grandma thanks to the huge print and varied color contrast on the screen.  They also used a talking software common here in the United States known as JAWS.  I was thrilled to see this technology being used on the island to give these kids a chance at a brighter future.

From there we again met Prime Minister Baldwin Spencer, who took time out of a busy election week to march in our ‘Walk for Sight’ and take a photo with us on this day.  After this, we rushed over to the Saint Nicholas School, where more than 100 students eagerly awaited Elvis’ arrival.  There, I walked up on stage and spoke about how Glaucoma can affect them and their families, about how Elvis helps me by being ‘my eyes’ each day, and taught them that no matter what disability a person has, they can do ALL the things they did before their loss, but maybe just a little bit differently than they used to.  The kids were SO attentive and asked wonderful questions, presenting us with a beautiful hand-drawn poster and thanking us in a speech prepared by the two student presidents.  Many of them came up to us, and mentioned that they had seen Elvis sleeping at the Athletic club while I ran on the treadmill and biked on the Spin bike.  They told me that they couldn’t wait for Friday’s Swim Clinic.  My stomach did flip-flops of joy, and I wiped away the tears beneath my dark sunglasses as we boarded the car for yet another stop on our awareness campaign.  

The highlight of our week came Thursday at the American University of Antigua, where Dr. Bird and I hosted the very FIRST online ‘virtual glaucoma meeting’ with more than a dozen countries logging in to tell their stories with glaucoma where they lived.  Denmark, New Zealand, Ghana, St Kitts, Canada, and more all joined us for a chat about how they are dealing with glaucoma.  It was so wonderful to SPEAK to all my friends from my online Glaucoma Support group for the first time, putting a face with the name.

What moved us to tears during and after this ‘virtual meeting’ was the stream of blind and disabled folks rolling into the room 20 minutes into our presentation.  These challenged individuals were seeking out others from the disabled community.  While this may seem like ‘no big deal’ to us privileged folks here in the United States, you HAVE to understand why this was so significant.  Sadly, Antigua and most of the Caribbean Islands are simply NOT disabled-friendly Islands.  The lack of sidewalks, the crumbled narrow, broken ones with giant drainage ditches unmarked beside them, and the lack of ANY wheelchair ramps, parking, or elevators in public or private buildings with perhaps TWO exceptions on an island of 10,000 people is alarming and astounding.  Their are so many folks that are disabled, but simply DO NOT LEAVE their house.  Because they can’t.  There’s nowhere for them to safely have coffee, go shopping, get a job, go to school.  These things are simply not possible for most of the disabled population of the islands.  

So you can understand the marvelous wonder and joy Jillia, my mother and I felt at seeing these folks make the heroic effort to attend our little ‘chat’.  AUA is one of the only buildings on the island that IS accessible to the disabled, and they hired a bus to get themselves there and showed up in their finest clothes, prepared to make their big night out.  I was floored.  One young blind man who has paralysis in his left arm proudly showed me how he ties his shoe laces with one hand and no vision.  A beautiful young girl sang a touching song about overcoming obstacles.  A blind young woman my age told me how I have inspired her to get training to use a computer and finally get her much-needed cane to become independent.  Finally, I met the local disability advocate, and we exchanged contact information.  I vowed to help him raise money for adaptive sports equipment so that this group could safely become active on the island.  Their 25 pound wheelchairs would simply not do.  My week had come full circle, and I finally felt the impact that my story over my eye disease had given to these people.  I gave them hope for a better life.  It was almost more than I could take.

The ‘lightest’ moment of my week was perhaps the swim clinic that I had so willingly offered to teach.  I laughed at myself, because although I’d been a swimmer competitively my entire youth, I had no clue what the heck I was going to teach these kids.  So as usual, I ‘winged it’.  The talk went beautifully, and about 40 kids showed up to the camp.  I spoke in the gym about how both myself and other people with disabilities swim and bike and run, and what kind of equipment and adaptations we need to make for ourselves.  I told them how Elvis helps me each day, and explained a little about Glaucoma.  Then we hopped in the pool for some fun exercises counting strokes and using a ‘safe-stroke’ method for blind swimmers known as ‘catch-up drill’.  This keeps us blind swimmers from hitting our heads on the pool when we get to the end.  At the end of the practice, they all challenged me to do a 50 meter race, and I finished 2nd!  Not too shabby for a girl that hasn’t swam in seven weeks due to eye surgery!  We did a fun relay swim with the kids, and they presented me with a beautiful team Storm towel and made me an honorary team member.  Finally, they sent me home with a stack of more than 20 hand-written letters, telling Elvis and I how much I inspired them, complete with drawings of Elvis, swim goggles, bikes and runners.  I put on my dark shades and cried in the locker room for half and hour.  It was simply too much.  

My final day in Antigua was one of absolute bliss and rest.  Mom, Jillia and I had been running non-stop since our plane touched down 9 days prior, and we had little time for beach and booze.  I had met a lovely couple on the flight down from Miami who owned a prestigious resort and had invited me and Jillia and mom for lunch. I accepted the invitation, and they suggested we pack a swim suit.  We arrived to the gorgeous Curtain Bluff Resort, overlooking volcanic Montserrat.  The sea was a painted turquoise and bright green, and the frozen rum drinks flowed all afternoon as we swam and played and lounged on rafts in the sea.  One of the worker’s daughters, a six year old named Katherine, gave me a tour of the ocean floor with our goggles on, and we collected and fed the starfish for hours and threw the ball for Elvis and swam with him until he finally collapsed from exhaustion.  It was the perfect end to the greatest week of my life.

I don’t even know where to begin now that I’m home.  I have so many, many things I want to help change on that tiny island.  From the lack of accessibility, to the lack of medical information and education, to the possibilities that these great spirited folks have in their grasp, yet don’t know that life is possible after glaucoma.  I do know that we spread the word with great fanfare and success across the whole island, and that the medical school is now going to step in and help the local population get the testing and care they so desperately need.  The island is LUCKY to have the likes of the great Dr. Bird, a force to be reckoned with no doubt.  If anyone can change these horrifying statistics of blindness in the Caribbean, it’s her.  I know that we brought hope and joy and possibilities to many people and kids in the community, changing lives with every talk.  But mostly, they changed mine.  


Being an expert patient


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

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


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

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

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

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

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

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

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

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

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

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

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

Facing Guide Dog Maturity and Retirement



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

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

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

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

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

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

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

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

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

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

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

How Guide Dogs Help the Blind with Amy Dixon and Elvis


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

The Ups and Downs of Glaucoma Part II




 I laid in bed this morning, daring myself to open my eyes.  I was frozen in darkness, enjoying the only certainty of my sight these days.  I knew that with my eyes closed and my body lying still, that the constant strobing, flashing, and mashing together of colors would be invisible to me.  In the morning, for almost 30 wonderful minutes each day, my eyes have a brief reprieve from the constant pain I endure.  No one told me that this would be my reality, and that Uveitis, Glaucoma, and near constant headaches and knife-like shooting pains in one’s eye would be my future after nearly 15 surgeries to save the little sight I have left.  

I laid there, daring myself to open first my ‘good’, non-surgical eye that has only 1% of vision left.  I ‘checked in’ with my surroundings, taking in the white ceiling, the recessed lighting, then dropping my eyes to the comforter where my guide Dog Elvis and his buddy Riese the cat slept peacefully.  So far, so good.  The lack of sunlight outside my shades helped keep the constant strobing to a dull, pulse-like signal off to my right.  And now the left.  


What a nasty three weeks it’s been.  My eye pressure has been too low (think of a deflated basketball) since emergency surgery back in September to correct HIGH pressure (inflammatory and steroid induced glaucoma) that was taking my sight through the destruction of my optic nerve. The surgery essentially ‘pokes a hole’ in the eye, allowing an escape for the ever-building pressure. However, the hole is too large, and the eye won’t maintain a healthy pressure (between 8 and 12 for normal eyes).  So, essentially, with the deflation of my eye (my pressure has been 3 for 4 months), the internal structures, including the choroid and macula, were beginning to show signs of detaching, and they needed to intervene.  


The first intervention was an injection of blood to try to create a clot in the hole to patch it up.  That failed.  Then a gel called ‘visco-elastic’ and THAT TOO failed.  Then a combination of the two, and that also failed.  My eye was simply not cooperating with the surgeon’s plan.  Two weeks ago, we pulled out the big guns, and we KNOW how that went down from my previous chapter. 


The day after my sword-wielding fun on the bar at Pearl and Ash, I headed up to Yale.  The center of my vision in the eye was simply gone.  Mostly black/ charcoal grey, with some shapes appearing around a central loss.  I was terrified.  I took the train northbound to Yale, and grabbed my overnight bag and a cup of dog food for Elvis.  I knew the news wasn’t good.  


Upon arriving at Yale, it was discovered that I had a Macular Fold.  Not good news.  In fact, terrible news.  The macula had ‘let go’ of the back of the eye along with the choroid membrane, that contains all of the blood vessels and nerves for the inside of the eye.  It was excruciatingly painful.  They couldn’t even touch my eyelashes on exam without me springing back in terror in the eye exam chair. My pressure?  ZERO.  The eye had NO pressure.  All of the injection from the prior three days had leaked out.  They decided to inject again.  I started to cry.  I was in terrible pain, and frustrated that so far, nothing was working.  I took a stiff dose of percocet, and Xanax and waited 30 minutes before I allowed them to approach me with yet another needle.  They had to re-inject THREE times to get the eye up to a ‘whopping’ pressure of 2.  

We had a huge snowstorm coming, and my transportation options were limited.  Because of the complications and pain that would arise over the next 24 hours, it was decided that I should be admitted to Yale New Haven Hospital.  A friend from Facebook who suffers from AZOOR, one of my extremely rare eye conditions that I have that CAUSED this Glaucoma, works around the corner from Yale and offered to help me get more dog food and a ride over to the main hospital to get checked in before the storm started.  My poor mother was frantic in trying to come up, but there was nothing for her to do overnight other than sleep in a chair and wait for more news in the morning.  Driving 90 minutes in slippery conditions was not something I wished upon her, so I convinced her to stay put.  

Overnight at Yale was not my best hospital stay.  Because my pain level was so high when I was admitted, I was dosed heavily with Dilaudid and an antihistamine to combat the itching it caused.  I was overly medicated and unable to speak.  Elvis firmly planted himself in the center of my tiny hospital bed, causing me to contort myself with great discomfort and sweat from his warm radiating body heat.  They hooked me up to IV fluids to try to get my eye pressure up, and about 30 minutes into my sleep, I desperately needed to use the bathroom.  I couldn’t see to find the call button or the thing that turned on the lights.  I felt around hopelessly in the dark to no avail.  With my arms outstretched, I headed in the general direction of the bathroom with the hopes that I could feel my way there.  My IV then got caught on something, and I was stuck.  I took another step and tripped over some sort of container, perhaps a garbage can and went down.  “Dammit!” I yelled to myself.  I had to pee.  Climbing up onto the IV pole, I used my leg in a sweeping motion to knock objects out of the way, and found the door handle.  Thank God, I thought to myself.  


This process continued all night until a nurse finally came to check my vitals.  She placed the call button next to my head and moved the obstacle course to the bathroom out of the way.  Elvis groaned each time I got up, alarmed that I would fall yet again.  Morning came and I was itching for release.  Lynne arrived to take me over to the Eye clinic for my next exam.  Dr. Tsai gave me an uncustomary hug and asked me how my night had been.  He was incredibly sorry an apologetic for the difficulty we were having in getting the eye to a stable pressure and explained why the pain was so unbearable.  Apparently all the nerves in the eye are in the choroid.  When it detaches it is extremely painful because inflamed fluid gathers there, distorting one’s vision immensely.  The retina is like a piece of semi-flexible plastic.  When a FOLD happens to this delicate part of the eye it is disastrous to one’s sight.  The retina is only meant to flex ONE way.  When it FOLDS, the ‘crease’ that is created is like a dent in a folded sheet of plastic.  It is not meant to bend that way, and causes a line of distortion in the vision.  Over time, that distortion can resolve itself, but in the meantime, it was like a psychedelic Salvador Dali Painting that made me dizzy and nauseous.  Closing the eye was the only relief, but closing the lid actually hurt the surface of the eye immensely.  I couldn’t win.

With a pressure of 4, they all breathed a sigh of relief.  The visco gel had held overnight, and I was to go home and rest.  I would return in two days to see Dr. Huang to possibly have a gas bubble injected in the back of the eye to re-inflate it.  I had an important charity event for Guiding Eyes for the Blind I was to speak at on Friday, and was incredibly worried that he would inject this bubble mere hours before the event, leaving me to attempt being my charming ambassador self in front of 200 people while hopped up on pain meds.  It was not ideal, but I had no choice.  Luckily on friday, the pressure remained at 4 and we decided to hold off on injecting until Monday.  I toughed it out at the event, and after 3 hours of smiling, hugging and speaking to raise funds for Guiding Eyes, I was cooked.  The event organizers got me a car home and I went straight to bed, where I remained the entire weekend.


Monday was more bad news.  Despite total rest over the weekend, my pressure had dropped to 2.  Both Dr. Tsai and Dr. Huang were baffled.  After several tests and three exams, they finally agreed to ‘wait and see’ how my eye responds this week.  I was so grateful, as the thought of another injection made be feel depressed and like giving up.  I thin they realized I was nearing the end of my rope with all the intervention.  


Yesterday I was cleared to attempt a little bit of stationary cycling, and it was exactly what I needed.  Although it was painful after 20 minutes, the idea of sweating due to exercise and NOT from pain meds was intoxicating.  I put on my head phones in the spin room at the YMCA, turned off the lights, and threw a towel over my head.  I sang out loud and rocked out for 40 delicious minutes.  Exercise has been my therapy during this whole process.   Triathlon has opened so many doors physically, mentally, and financially for me.  To be away from training for nearly three weeks was somewhat akin to torture.  I have 4 months to get ready for my first National Championship Race, and the podium is the only place I want to be.  Anything else will simply not do. 

Nervously this morning, I opened that eye, afraid that the activity I did yesterday would cause my pressure to drop further.  Gratefully, it opened to the same haze and distortion that had been there prior to my little bike ride, and it appeared as though nothing had changed.  Everything still appeared like a Salvador Dali painting, and I couldn’t see except shapes of things that may or may not be furniture in my bedroom.  My striped curtains had a fantastical bend to their straight lines, as though held out to the side my some invisible force or wind.  

Nurse Elvis stirred upon my movement, making his way to the top of the bed for my morning face wash.  I giggled as he playfully bowed in front of me, pleased with himself for forcing a giggle from me.  As he flipped over with great force onto his back for a tummy rub, I smiled, and said, “Thank you” aloud to Elvis, who replied with a snort, a playful sneeze and a groan as he swam around my comforter on his back in delight.  BEST. NURSE. EVER.  No matter what happens tomorrow with my sight, I KNOW that today will be great.