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.

A life-changing World Glaucoma Week

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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

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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.

The Ups and Downs of Glaucoma Part II

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 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.

The Highs and Lows of End-stage Glaucoma

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One minute I’m standing on a bar in the Bowery, wielding a sword while chopping off the tops of Champagne bottles, and the next I’m sashaying around a hospital room hooked up to an IV Pole.  My, my, glaucoma is a roller coaster ride…..

 

I want to go back and kick the damn doctor that told me, “Glaucoma is a piece of cake compared to your severe Uveitis.  A regular ‘walk in the park’ compared to all you’ve been through with the chemo and steroids for treating your Uveitis.” Yeah, this week, “TOTALLY was a walk in the park.  NOT!”  When I had my steroid implants put in 5 years ago, it was explained that my chronic Uveitis had progressed to the point that I was left with no other treatment options than to to place Retisert steroid implants into my eyes to control the inflammation that was slowly robbing me of my sight.  The biggest risk of these implants was that 65% of patients developed Glaucoma from the high doses of steroids.  We agreed this was an acceptable risk, as the alternative was a 100% chance of losing my sight to the advancing disease.  His big selling point?  “Glaucoma is SO treatable compared to the type and severity of Uveitis that you have. We’ve got you covered.”  

 

I’d like to go back and kick him.  Hard.  It has been 22 months since I developed severe glaucoma.  First in the right eye, causing me to have emergency Ahmed valve surgery to release the high pressure, and now 4 months ago my better eye (the one with the most vision left after all the Uveitis damage) has succomb to Glaucoma.  Glaucoma in older people isn’t too bad.  It can be very treatable with prescription drops and surgery.  In young people who have scarring keloid issues like myself, it is a serious battle to save one’s sight.  I have had 9 surgeries in 22 months for this glaucoma, and more is imminent.  

 

I told myself after years of chemotherapy and steroids and being VERY ill from the Uveitis that I could take anything.  My threshold for pain would be raised, and I was prepared to do battle against this unseen enemy.  I had no idea how much of a roller coaster it would be and how much physical pain and emotional disappointment I would face.  My life would stop and start and stop and start many times due to surgery and procedures that may or may not work.  Right now, I’m trying to stay focused on my first National Championship triathlon race in May with my friend and guide Caroline Gaynor.  I’ve worked so hard and had so much short term success that I’m ultimately determined to have a great race and experience.  I refuse to let this disease win.  But right now, it’s winning.

 

Long story short, my pressure has been LOW in the left eye since surgery in September.  My pressure skyrocketed right before my final race of the season in triathlon, and I had emergency Trabeculectomy surgery where they basically poke a hole in your eye to create a pathway for the excess pressure and fluid to escape, thus saving your retina from detachment and impending blindness as a result.  However, the hole they created is working TOO well, and my eye is essentially deflated, and the retina is ‘falling off’ the back of the eye because there isn’t enough pressure to keep it in place.  

 

They’ve tried injecting blood to create a clot to plug up the hole.  They’ve injected a visco elastic gel to try the same thing.  They tried BOTH and it still failed.  Ultimately they could do the ‘easy’ thing and put a stitch in to close the hole up, but that is not a perfect solution either.  So, last friday, I had a VERY thick gel called Healon 5 injected, but it was TOO thick and my pressure went from a low of TWO to FORTY EIGHT within seconds.  A normal pressure should be about ten.  The doctors immediately rushed around the office trying to grab a syringe to take the Healon OUT of my eye.  Here’s how it played out.,,,,,

I’m sitting in the exam chair in Dr. Tsai’s office.  He’s sitting a foot in front of me, looking through the slit lamp to watch while his Fellow injects the Healon into my supposedly thoroughly numbed eye.  He gives the Fellow the order. “Ok, start pushing.”  I feel my eye growing larger, re-inflating and getting filled with the thick gel.  “Ok, stop,” he says.  I sit back in the exam chair, and let out a deep loud exhale.  Everything goes black.  

“Um, excuse me, but I can’t see anything,” I say with curiosity.  “What?” asks dr Tsai.  I repeat myself.  “Everything is black.  Is that normal?” I am trying to stay calm.  He orders me to lean forward to look through the lamp into my eye.  “Damn.” And with that, Dr Tsai, his Fellow, and the Resident all rush out of the room.  Mom is in the corner holding Elvis to keep him calm.  I call him over to me.  “Come here buddy.”  He happily obliges and wiggles up against the chair in nervous body language that only he and I know.  The wags are tiny, and he’s making tight circles and ‘bumping’ me like a shark to get a soothing butt scratch.  The doctors rush back in.  “Get a ten gauge needle. We have to do this fast.”  Mom recollects Elvis, who is not too happy to be separated from me at the moment.  

“Ok Amy, You’re having an occlusion of the central vein in the eye.  The pressure is 48.  We need to take some fluid out to get the pressure back down to restore the vision.  You ready?”

“uh- ok, I guess?  Can you put more numbing drops in to be safe?”  

“No problem Miss Dixon.  I’m so sorry.  You’re being a real trooper.  Just hold still and we’ll get this for you.”

“Trust me, I’m not Moving ANYWHERE” I joked.

“Ok Dr. Lee- pull!” commands Dr Tsai.  “I am pulling. Nothing’s coming out”

I start to hyperventilate…”What do you mean nothing’s coming out?”

Dr. Lee responds, “The fluid is too thick for the needle.  We need a bigger needle.”

“Great” I joked aloud.

The three of them scramble into the other exam rooms, opening drawers and cabinets in a desperate search for a larger needle to get this shit out of my eye as fast as possible.  I look to my mom who is looking horrified at the ordeal.  “Well this is fun” I joked.  “You’re being way braver than I am right now” She said.  “Not really,” I replied.

The three of them come back in and get into injection position again.  The needle goes in.  I feel a searing, stabbing immediate pain and jump straight up out of the chair.  “What the FUCK!?” I yelled.  “WHY did I just feel that!?  I thought I was NUMB?  What the hell?” I was hysterical.  

“I’m so sorry Miss Dixon, we must have hit the conjunctiva.  It’s a really sensitive part of the eye.  I’m so sorry.  Please sit down.” 

“No Freaking way!” I yelled.  “Not until you guarantee that I’m numb again.  Not happening.”  

The Fellow douses my eye with a sufficient amount of anesthetic and I sit back in the chair.  The next needle won’t work either.  I start to laugh nervously and hysterically.  Elvis has now wedged his body between me and the doctors, feverishly licking my hand in worry.  He is being difficult in that he won’t go back to my mom in the corner.  I finally convince him and keep talking to him as they grab the fourth needle in an attempt to retrieve the gel from my eye.  

The needle is in, “Keep pulling Dr Lee,” says Dr. Tsai.  “It’s coming out.  Steady there.  Ok, that’s good.”  The pressure was now a much more comfortable 20.   “Miss Dixon, if you become nauseous tonight or experience severe pain first thing in the morning, just come back up.   I suspect that your pressure will climb back up high first thing tomorrow morning, and we may need to take out more gel if that happens.  

 

His predictions were correct, and after a rough night, I returned the following morning to have more fluid taken out via a very large gauge needle.  I had the misfortune of seeing this needle prior to the procedure, and it appeared more like a spinal tap needle than what one would expect to be put into a tiny and delicate eyeball.  I nearly fainted at the sight.  We were able to get the pressure down to a comfortable 6 and he suspected that it would stay there.  The final piece of wisdom that he left me with was this.  “The reason you’re having so much trouble with this trabeculectomy is this.  With a VALVE surgery, most of the ‘work’ is done at the time of the operation.  The hardware then does the heavy lifting from there.  In the case of a trab surgery, only 50% of the work is done during the operation itself, and the rest is done in the ‘tweaking’ postop with injections and other procedures.  The good thing about this is that we can really customize this surgery and have a lot more finesse.  It’s a lot more delicate and difficult, but in the end, we can have a much more positive outcome than with a valve.  I know this isn’t what you want to hear, but I AM optimistic that we can get you to a good place with the vision in that eye, but it may take a lot of finesse and patience on your end.”  I finally understood what he was working toward, and resolved to give him the benefit of the doubt and allow this to play out as it needed to.  I went home and went to bed. 

 

Monday was the biggest trade show of the year for me in my business.  It was the annual Grands Crus des Bordeaux Tasting at the Waldorf Astoria. I swore that no matter what, I would make it there, even if it meant doping myself up on pain meds.  Monday started out great.  My pain was manageable, and the vision was pretty good.   I was SO excited, because my friend who has the same eye disease as I do (AZOOR) , which is extremely rare, was coming into town from the UK and we were scheduled to have a private Champagne Saber lesson at the famous Pearl and Ash Restaurant with wine Director Patrick Cappiello, one of the top sommeliers in NYC.  It was going to be a awesome to have two blind chicks taking a sword and opening Champagne!  This had always been on my bucket list and no matter what happened with my eye, I was determined to accomplish this feat at least once.  

 

The trade show was great, although the lighting was dark, and I struggled taking notes and navigating the tables with Elvis to get near the spit buckets with my tasting booklet, phone, wineglass and pen in my right hand.  I attempted using Siri to take notes and a dictation app, but the cell service was miserable and both refused to work inside the Waldorf.  I went old school and wrote my notes down illegibly with the assistance of a kind stranger who tagged along with me from table to table, letting me know which page to turn to and write upon.  

By 1pm I noticed that my vision was deteriorating and my pain was amping up.  I popped a Percocet and called Yale Eye Center.  They told me that my pressure was probably dropping, and to drink a ton of water to try to keep it up and come first thing the next morning.  Maggie and I met in the lobby, and were like screaming teenagers on our way to the restaurant.  Two blind sommeliers (she is a wine writer for Decanter Magazine in England) headed to wield a sword.  The best part?  Patrick had emailed us earlier to warn us that the entire Sabrage (as it is called in French) would take place with me STANDING on the bar.  And I had thought my days of dancing on bars were over…..I was more than excited!  

 

Maggie and I caught up on all of our recent eye surgeries and wine adventures and got to the restaurant thanks to a very diligent cab driver.  The restaurant was terribly dark, and the waiter was awesome, in that we simply told him any dietary restrictions and dislikes, and he designed a tasting menu around our palates.  Pearl and Ash is famous for Patrick’s incredible list of unusual Loire Valley wines and boutique grower Champagnes, so I was pumped to get the evening started.  Patrick led us down to the end of the packed bar area, and held my hand as I climbed atop the bar top in my high heeled boots and short mini dress.  The sword was as long as my leg, and sharp as could be.  Maggie stayed down on the floor, holding my anxious guide dog, who was jumping up onto the bar stool to let me know his disapproval of my climbing up atop the bar.  He wagged nervously and moaned to get my attention.  It was such a spectacle that everyone in the bar was taking his photo and video taping the debauchery about to commence.  Patrick gave me a brief lesson in the method to sabering the Champagne bottle, and with a solid, swift sweep of my right hand, the cork and bottle neck were flying through the air, hitting the ceiling far across the restaurant.  The crowd erupted in a roar, and I celebrated by wielding the sword over my head like a warrior.  Patrick promptly took it away from me……

Maggie and I returned to our tables victorious. with lots of smiles, cheers, and pats on our back from witnesses to our successful Sabrage, and a congratulatory glass of incredible Jacques Selosse Champagne made its way to our table as a gift from two nice German businessmen celebrating their birthdays at the restaurant.  Bucket list?  CHECK.

 

HOW THE MIGHTY FALL:

By mid dinner, I was in an alarming amount of pain, but was trying so hard to ‘stay in the moment’ and numb it with gorgeous wine that I managed to tough it out.  I was grateful that Patrick sat with us and was being interviewed by Maggie for her article, as it allowed me to be still and quiet and focus on my pain management.  As the evening wore on, the colors in the bar began to melt into one Salvador Dali-esque melted kind of painting, and it appeared that the world had turned to a multi colored sea of candle wax, dripping and oozing from the sky.  As we gathered our coats to leave, the room was spinning, and I began to feel nauseous.  Something was terribly wrong.

I ignored it in the cab to Grand Central, determined to finish my night with Maggie on a positive note.  I covered my left eye to halt the spinning and scurried into the terminal, grabbing two bottles of water at the news stand, knowing that drinking fluid was critical to getting my low eye pressure up.  The nausea continued for the hour ride home, and I immediately went to bed, preparing an overnight bag for Yale in the morning.  I knew that whatever was going on was serious, and with the snow storm, there was no way they were letting me go back home.  But I had had ONE HELL of an amazing day.  I turned off the light, knowing that whatever happened with my vision at Yale in the morning, I had gone out with a bang, and each and every delicious food course, the sword-wielding dance on the bar, and sips of stunning Champagne had been worth it.

 

 

 

HOW to become a blind person

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I didn’t know there was a ‘trick’ to becoming blind.  No one handed me a manual when I lost my sight.  No one told me the ‘steps’ I needed to take or the questions I needed to ask.  I knew nothing, and literally was ‘flying blind’ through the process.  Having been declared ‘legally blind’ by U.S. standards as of December 11th, 2008. I have since become an expert in this area.  Certainly not by choice, but most definitely out of necessity.

 

Being blessed as a hard-headed, ‘never-take-no’ for an answer Sagittarian, and a former Pharm D Student who had to be her own best advocate and cheerleader, has served me well on my path to becoming newly blind.  I truly AM a believer in ‘everything happens for a reason’, although at the present moment we may not KNOW what exactly that reason is.  While I don’t believe that god intended for our lives to have so much difficulty, heartbreak and hardship, I do believe he gives us the tools to overcome and move away the obstacles in our lives that are preventing forward progress. 

 

My path started with a simple whiney conversation with my friend Scotty, who is an accomplished author and business owner.  I was frustrated that I was about to undergo chemotherapy for my autoimmune eye disease and angered by the lack of flow of information from the variety of doctors and experts that were on my team.  There were a ‘lot of cooks in the kitchen’ with no head Chef.  Scotty volunteered her blind neighbor’s phone number, who was a guide dog user, who himself had recently suffered vision loss due to Retinitis Pigmentosa, a disease with a similar path to mine.  He had stopped working due to his new disability, and spent a great deal of time helping the disabled and working with special needs kids.  While I was terrified to even make that call, admitting that I too, was in the same shoes as Alan, I knew that the feeling of loneliness and sadness and frustration due to lack of education was harder than dialing the phone to admit that I needed help.  I had always known the day would come, but I had always imagined in my head that when my vision loss would happen, that I’d be happily married with two great incomes, a family, and a house of my own.  Standing alone in my apartment with my cat was not how I envisioned this happening, nor the support network that I had planned on surrounding myself with.

Alan seemed to be expecting my call.  I was awkward and uncharacteristically shy.  I was choking back the tears that so desperately wanted to come.  I had so many questions I didn’t even know where to begin.  I felt my shoulders drop as I began to share my story of vision loss and how I got here.  He sighed and listened, sympathizing with each and every disappointing doctors’ visit and procedure.  I relaxed a little as i told him how frightened I was about the possibility of losing my job, my friends, and my independence.  I finally let myself have a good cry, and he was patient and kind enough to let me do it.  Once I pulled myself together, the questions got tougher from Alan.

 

“Did you call BESB?” he asked.

 “Who’s BESB?” I replied.

 “Do you have a certificate of legal blindness yet?”

“What is THAT?” I puzzled.

 “Have you turned in your driver’s license yet?”

“No.”

“Have you applied for disability?”

“I have no idea.  You can do that?”

The questions continued, and I could almost see him shaking his head through the phone.  I had NO clue about anything he was talking about.  I heard him take a deep breath and say, “Go get a piece of paper and a pen.  I want you to write all this down.  One- you need to go buy a fax/ scanner/ printer at Staples.  Keep your receipt, as it will be tax deductible.  Two- make a list of all your doctors and get a copy of your job’s disability benefits policy.  Three- CALL BESB- the Board of Education and Services for the Blind.  They are the ‘governing body’ for social services for the blind here in Connecticut.  It might not hurt to contact the Jewish Guild and Lighthouse for the Blind in New York City as well.  Here’s the number.  Make an appointment to see the social worker and get an appointment with a mobility instructor to teach you how to use a cane.  Have their vocational rehab person come to your office and see what accommodations can be made for you in your office.  Four- Get your certificate of legal blindness.  You can’t do anything without it.  Get all your paperwork from the doctors- visual field exams, test results, etc, and send it overnight to BESB with your driver’s license.  That should get the ball rolling.  Your fax will be a busy place, and don’t hesitate to call me with any questions.”

I thanked him and slumped down on my kitchen floor.  What the heck was I getting into?  This was a whole world I had no clue existed until this very moment.  I was beyond overwhelmed.  I stared at the sheet of paper, the lines, bending and waving as my vision ebbed and flowed, and shut my eyes tightly.  I was NOT going to cry again.  “Thank you Alan, I’ll keep you posted.” And with that, I hung up.  Buoyed by the new information I held in my trembling hands, I wiped my eyes and dialed BESB’s number.

I learned quickly that anything involving the government happens in a sea of red tape so long that it seems to flow in a parallel universe, beyond space and time.  I was angry, determined and pissed off- at the world, at the unfairness of it all, at my disease, my body that was failing me, and the doctors and workers at BESB that held my fate in their hands.  My fuse was incredibly short, and god have mercy on the poor soul who ended up on the wrong end of an extended hold on the phone.  I was a volatile angry hot mess.  Apparently the social worker that handles ‘new cases’ was only working on Thursdays, and the holidays in 2008 fell on a Thursday, leaving me without a cane for more than a month.  I called daily and looked for alternatives, finally pestering them all the way to the director’s office after a fair amount of threatening.  

After working with the cane for several weeks, I grew weary of the pathetic stares, and the quiet whispers of people in public talking about ‘that poor blind girl’ as I bumped and maneuvered my way through the crowded Grand Central Station.  I was leery of transitioning to a Guide Dog, but warmed up to the idea once my sister explained that the dog is able to travel with me for business, leaving all my excuses in the dust.  

BESB did a lot of great things to prepare me for the world of the blind.  One has to go through what is called Orientation and Mobility Training, or O&M training with a cane or eventually a dog if approved by their cane instructor.  You must prove to the Guide Dog School and the state that you are SAFE enough alone with your cane in order to handle the addition of the dog.  While our guide dogs are incredibly smart, and can remember specific routes and places and alert us to curbs, narrow passages, stairs, and doors, they truly go wherever they are told.  If a blind person doesn’t have good orientation skills, they can get very lost or seriously hurt.  My first lessons were in using the cane safely on straight lines in familiar places.  As I advanced, we tackled intersections, where I would be blindfolded, and learn to listen to traffic patterns for parallel versus perpendicular traffic, waiting to cross when the traffic changed direction.  I was taught the number of seconds that certain WALK lights need to cycle through in order to change the traffic light from green to red.  I was becoming more in tune with my hearing, and sensitive to vibrations very quickly.  

 

I was taught about adaptive aids for vision, such as magnifiers, special light bulbs, and computer software that would read my emails and internet aloud to me.  I was educated on the accessibility of my phone, taught grooming tricks and organization skills in my home to keep colors straight and my cabinets in order.  I had cooking lessons and was shown how to handle both gas and electric stoves without sight.  I learned special knife and cutting skills.  I was introduced to talking timers and tactile numbers that mimicked braille to determine the oven temperature and to feel my prescription labels.  None of this had I ever imagined existed.  

I was walked through the disability paperwork by an organization called Allsup that handles these cases for the newly disabled.  I was under the assumption that I was going to try to work through the months of chemo, and I had assumed terribly wrong.  Once I had my guide dog, I learned to ride the public transit with my O&M instructor, showing me how to keep Elvis from sliding down the narrow aisle each time the bus abruptly halted, and how to keep his tail and paws from getting stepped on during our crowded evening commute home.  Dressing became an art, and I ditched my cute shoes and handbags for sturdy, heavy-soled shoes and a backpack to avoid the constant tripping on uneven sidewalks and lugging the various layers of clothing, dog food, and medication on needed on me at all times.  

Alan continued to mentor me through the entire process, start to present, walking me through each step and guiding me around each and every seemingly impossible obstacle and hurdle.  The perks of my new ‘legally blind’ status?  I got a bigger tax deduction, a free fishing license (yes, seriously they issue this to you the day you’re declared blind- apparently they think that’s a blind person’s sport), a half price bus pass, half price train pass, upgrades on planes to the bulkhead seat or business class, and one cool dog.  Oh, and also an impressive collection of hats and sunglasses.  Being visually impaired requires that you protect your eyes at all times, and low hanging branches for those of us on sidewalk travel becomes a frequent issue, therefore requiring the use of a sturdy baseball cap and glasses for protection.  Go figure….

 

So my advice to those persons who are newly sight-impaired or have relatives or friends going through the same challenge is this.  Find a blind friend who has ‘been there, done that’ and listen to them.  Be proactive and demand timely responses from your emails and faxes.  EDUCATE yourself about your disease- take notes and ask LOTS of questions- the doctors work for YOU.   Be prepared to be running a medical office out of your home for at least 4 months until you are ‘set up’ with the services you need.  Keep MULTIPLE copies of your certificate of legal blindness on hand once you have it.  That piece of paper is like gold and will open ALL the doors you need opened once you have it.

 Go to yoga.  What?  Never tried it?  Now’s the time.  Seriously.  You’re going to need a little ‘zen’ in your life where you can simply check out for an hour.  Even if you suck at it, are overweight and inflexible.  Go.  You’re going to need the therapy it provides.  And that’s another thing.  Get a therapist.  If you have a broken foot, you have an orthopedist.  When your nerves are shot, and you’re upset and confused, get those nerves fixed.  Take medication if you have to.  This is a BIG transition in your life.  Possibly the biggest adjustment you’ll ever face, so don’t fight it.  Fighting it only makes you feel worse.  Find a neutral person that can hold your hand and help you stay strong through this whole process.  It’s a process.  It’s grief.  It is a loss.  You will go through many stages of dealing with blindness; anger, fear, denial, sadness, and acceptance.  Having a professional to guide you through that can make it or break it for you.  It doesn’t have to be a solo journey.  Include your friends and family on your decisions and treatment options, and be VERBAL about how your needs are changing.  No one is going to know what to say to you, or how to help you, or when to leave you alone.  Be fair and be clear, and they will be your support network.  

Join support groups for your eye disease online.  There are entire HUGE communities on Facebook, Yahoo and Foundation Fighting Blindness, local hospitals, and more all around the world.  Share your story.  I guarantee you there’s at least ten people out there going through the exact same thing you are RIGHT NOW.  

And FINALLY, my best ‘advice’ to you or you loved one is to LET GO of what your expectations about being a blind person are.  Blindness is NOT a death sentence.  It IS the death of a part of you that you relied on for so many years, and grieve it for what it is- a loss.  BUT, by letting go of what you THINK is going to happen, you open yourself to the reality that it is NOT nearly as scary as we all see in the movies, and you WILL live a full, maybe even fuller life than you ever did before vision loss.  Focus on the HUNDREDS and THOUSANDS of things that you CAN do, and NOT what you can’t.  Honestly?  for me, life without sight is not worse or harder, it’s just different.  Everything I do is slightly different that how I used to do things.  Maybe it takes a little longer sometimes, but with practice, I do them just as fast as a fully sighted person.  LITERALLY there is NOTHING I cannot do that I did before vision loss because there is an accommodation for EVERYTHING!  Skiing, swimming, biking, knitting, writing, cleaning, cooking- EVERYTHING.  Driving is still the universal taboo for us unsighted folks, but thanks to the great folks at Google, driverless cars that have safely navigated 300K miles without a single accident are now a reality in Arizona and California.  Guess where I’m moving soon?  I never imagined that I would be a blind writer, triathlete, skier, spokesperson, sommelier and philanthropist.  Before friends like Alan, I had no idea they existed.  Now get out there and LIVE!