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.