I am one lucky Blind Chick- fate, luck, or God?

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Booting up the computer this morning, I had a harsh dose of reality.  I am now 9 days post-op from having Trabeculectomy surgery on my remaining good eye for severe Glaucoma, which has left me with 1% remaining vision.  I am in an uncomfortable amount of pain, probably a 6-7 out of a 10 if you were to ‘rate’ it.  But man, am I damn lucky.  

 

I never really believed in ‘fate’ or ‘divine intervention’ having come from a very scientific background as a former Pharmacy Major at the University of Connecticut.  I’ve been programmed to think analytically and objectively, with facts and statistics as my guide.  But it’s hard to argue against some sort of divine presence or guidance when your life has taken such dramatic turns of good fortune despite overwhelmingly terrible odds.  

 

I am a huge proponent of being one’s own best advocate- for whatever it is that you seek- education, liberation, a better job, healthcare- anything, really.  I do believe the squeaky wheel gets the grease, and few squeak louder than me.  Never having been a ‘wallflower’, I find it near to impossible not to speak up when I disagree with something or someone, which has gotten me into LOADS of trouble over the years, but has also opened MANY doors for me, so I like to consider it an attribute more than a detriment.  While as a kid this got me a lot of time standing in the corner, ‘thinking about what I’d said or done to offend my teachers or fellow students’, it seems to have served me well as a young woman faced with an extremely rare disease that is robbing me of my precious sight.  

 

People like to pat me on the back and give me props for ‘accepting’ the fate that is blindness.  I have FAR from accepted this impending blindness, and have fought tooth and nail for 15 years to slow it down or stop its darkening blanket of blackness.  What I have ‘accepted’ is that no matter what happens with my sight, I have the ability to do EVERYTHING I did before any vision loss, with the exception of driving, and even that someday will again be an option for me thanks to the smart folks at Google who have invented the driver-less car, now legal in CA and Arizona.   Besides, I can always bribe a friend into taking me to a golf course to get my ya-yas out while driving a golf cart like a maniac.   So, I haven’t ‘accepted’ my disability so much as I have ‘adapted’ to it, and make blindness work for me.  

 

I keep myself sane and less afraid by daily, no hourly, reminding myself that it could ALWAYS be worse, harder, scarier, more painful, and more difficult than what is my current reality.  Having spent the last 9 months training and racing with other disabled athletes, I realize how blessed I truly am.  Even physical limitations like missing limbs, hearing, sight and crippling pain are not excuses not to be your best self.  There is a way around EVERYTHING.  You ALWAYS have options.  We may not like the options we’re presented with, but they always exist.  That’s why throughout all of this, I’ve never once felt hopeless or helpless.  When I hit a wall, or it seems a question has no answer, I just Google, and then I feel good again!  That sounds trite, and it sort of is!  

 

Last year, after surgery number 12, I was in a terrible amount of pain.  Daily, my eye would swell to three times its normal size, and I was desperate for relief.  Through the power of Facebook and my wonderful online support group, I FOUND it.  A FB friend from New Zealand had suggested an eye drop that my doctor could prescribe instead of the nasty narcotics I was taking every three hours with little relief.  Boom.  Power!  Knowledge.  Done.  I felt like I could again conquer the world.  I had information at my fingertips- all I had to do was ask the questions, and therein lied the answers.  

 

As a student, I was struggling 15 years ago financially, destined to become a pharmacist while paying for school by working at night in the restaurant business.  Through a seemingly cruel twist of fate, I was diagnosed with a rare eye disease and told I would be blind within a year.  I couldn’t pursue my dreams of being a pharmaceutical researcher, working hard to cure diseases like HIV and other immune related viruses.  Instead, the owner of the restaurant paid for me to attend classes to become certified as a Sommelier, a job as a wine professional,  where no matter WHAT kind of sight I had left, I would always be able to rely on my highly trained nose and palate and therefore be able to keep a roof over my head.  I was saved.  

 

My father passed away, leaving me no money, and an expensive horse to care for, and what door opened for me?  Becoming a riding instructor and trainer of horses, a job that I had long missed while working so hard to pay for my tuition in Pharnacy school.  I was able to train and compete my horse from Canada to Florida, winning and earning enough of a living to keep the horse self-sustaining for several years while I also pursued my passion for wine.  The expression, “When God closes a door, he opens a window” holds very true for me.  

 

My eye disease (Multi Focal Choroiditis) was so rare when I was first diagnosed that there were fewer than 50 patients diagnosed in the United States. and not a single one of them was male.  It just so happened that my local eye physician had done his fellowship under Dr. Lawrence Yannuzzi, the head of the American Board of Ophthalmology, who not only named and discovered my disease and was researching a cure, but happened to be RIGHT HERE in New York City, a short 45 minutes away.  The fact that I got to see ”the man himself’ that first year, is the ONLY reason I still have any remaining sight left 15 years later.  

 

The prognosis was bad- the disease affected women, mostly of Scandinavian descent, with no common medical history, and all of them were blind by age 40.  Most were diagnosed in their 30s, and those that got diagnosed at a younger age suffered even more damage.  I was likely going to be a statistic.  I had no health insurance when I was diagnosed, racking up tens of thousands of dollars onto a school-issued credit card with a $30,000 limit.  MRIs, bloodwork, Angiograms, and specialist after specialist was determined to get a piece of my action.  After Dr. Yannuzzi finally asked me to come back for a follow up in a week, he gasped when I told him I couldn’t as I was out of money.  “What do you mean you’re out of money?  Don’t you have insurance?”  I was mortified; embarrassed.  “No.”  

 

Grabbing my hand, he jogged me down the hallway, this 70-year old doctor, so GOD-like, that all the little underlings would SCATTER as he moved their way.  I trotted along behind, afraid and confused.  I don’t think he’d ever actually been into his own billing office in this giant medical building, but somehow he found it.  “Maria- Miss Dixon does not pay a DIME from this day forward.  Do you understand me?” He bellowed.  His vein was sticking out of his forehead and his glasses shook with anger.  “Am I clear?”  “Yes,” she meekly replied.  Grabbing me, he turned me to face him, and held me right against his face by each of my shoulders.  “Young lady.  You do NOT pay a dime until I can FIX you, okay?”  “What?” I eked out.  “You don’t PAY until I can FIX you, got it?  Do I make myself clear?”  He patted my shoulder, and left me standing there, mouth agape.  “See you next week,” he said while walking briskly down the hall back to his office.

 

The great Lawrence Yannuzzi to this day stood by that word, 15 years later.  There is still no cure for my disease, but I honestly believe he will die trying, as he is STILL not retired.  He has been the “Captain of the Ship” for my illness, coordinating with the three top Uveitis specialists in the country who treat the family of diseases that is MFC.  When my disease took a drastic turn for the worse 5 years ago, he was on the phone making arrangements to see Dr Foster in Boston, the leading pioneer in auto-immune eye diseases at Harvard, who invented the Retisert Implants I now have in both eyes that have saved my sight.    When I decided to have the surgery done closer to home, Dr. Yannuzzi found a former student of his that had worked on the clinical trials of my implants and happened to be residing locally at Yale New Haven Eye center.  All had come full circle- Student, teacher, patient.  

 

Social media has been my savior as well, and reminds me daily that I am one of the lucky ones.  Most women with my disease in other countries suffer barbaric procedures, leaving them with terrible scars that steal their vision even faster than the actual disease.  Many go for months without seeing a specialist due to a lack of education and information.  Some live in remote areas and have no public transportation to get to their appointments.  And still others don’t have a Dr. Yannuzzi or even a local eye doctor that has even SEEN a disease like this before in a live patient, let alone know how to treat it.  I live in the Northeast of the United States, with access to the best doctors, transit and education one could ask for.  I am surrounded with smart people with a high degree of education who can ask the tough questions I may be forgetting at these critical appointments and have connections to get me in to see the top specialists on a moment’s notice.  Not many folks in Oklahoma, Nebraska, or Iowa have these blessings at their fingertips.  Am I lucky?  You bet I am.

 

I had NEVER heard of a blind triathlete before in my life.  It certainly wasn’t something I had aspired to as I was going through surgery number 12 last year.  All I knew was that I was depressed, and out of shape due to the medications and surgeries, and that running had previously helped me lose weight.  I wanted to get back out there, but didn’t know how.  Again, social media linked me with an incredible woman who specializes in guiding blind athletes, specifically in triathlons.   With her sheer will and enthusiasm, I suddenly found myself believing that I could actually attempt and finish a triathlon, even without sight.  In addition to her support, I was fortunate enough to be close to Manhattan to train with an amazing group of other blind and disabled athletes known as Achilles.

 

I had always felt grateful for the little vision and abilities that I had, but never so much as when I met some of these inspiring men and women.  They were survivors, no THRIVERS, and I immediately felt like the biggest slacker on the planet.  Eddie had done MANY marathons and triathlons as a blind athlete, and Patrick, who uses a walker to complete each slow, painful, step, is out there EACH AND EVERY Tuesday and Saturday, rain, snow, or blistering sun to get in his three mile walk.  Was I lucky to be there?  You bet.  

 

So you ask, “Do you feel like a lucky woman?”  Well, yes.  Yes I am.  I have found a sport I love and excel at, have acquired hundreds of new friends to train and race with, and have met organizations that support and believe in me and my abilities as a person and an athlete.  I have the best doctors, nurses and nutritional therapists one could stack a deck with, with a literal ‘who’s who’ on speed dial any time of day or night, in the Ophthalmology and Neurology worlds.  I live in a wonderful town with decent transit and a host of wonderful supportive friends and neighbors.  I have an education and a booming career that allows me to travel and eat and drink great wine and food.  My family is there for me 24/ 7, just an hour or a phone call away.  And most importantly, God got it right when I prayed hard and long for a tall, handsome blonde man to come into my life and make it all better.  I just never thought he’d have four legs.   He is my Elvis; my Guiding Eyes for the Blind Labrador.

 

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14 thoughts on “I am one lucky Blind Chick- fate, luck, or God?

  1. You are an amazing person! I am so glad to have met you. I would like to sprinkle Amy Dust all over everyone so they would have such a positive attitude, because… Attitude is Everything! And you show that in how you live. Thank you for being YOU! And I hope you feel better… real soon. Hi to Elvis:)

  2. Aregbe Tunde Taoheed

    I have Glaucoma too. I’ve lost my L-sight & the R also can not see without glasses, even with glasses, I cant see clealy, I’ve tried all my best, but all in vain, & now, I hold on to God. Am a graduate on Marketing also an Advance Diplomal in Air Ticketing & Reservation & a sportman too, a Boxer. But now, am doom with nothing, cause of my inability to fine of my duties, I was asked to resign. & there is no blind boxing game in my country NIGERIA. Please, if you have it overthere please help me in anyway you can & I’ll be so gratefull. Thanks, may God bless you (Amen)

    • I am so sorry to hear this! bless you! You should look for help from your local LIONS CLUB International. They are an amazing organization that helps the blind and low vision people from all over the world. Someone in your local village can help put you in touch. God Bless!

  3. Stephani Adams

    A MUST READ! Thank You Amy Dixon, your experiences, trials, struggles, accomplishments, determination, and most importantly your faith and hope,….. GIVE ME HOPE FOR MY FUTURE REGUARDLESS IF I GO BLIND WHEN I GET TO 40, EARLIER OR NOT. I LOVE YOU THANK YOU.

  4. Jessica N and Makiko

    I have Retinitis Pigmentosa and too am going blind. I like how you said you’re not as much “accepting” it as you are “adapting” to it. I’m not sure where I am.. I think that may like be a spectrum from “accepting” on the far right, to “adapting,” in the middle to “in denial” on the other side. Still contemplating that.. it’s a hard thing to deal with and wrap your head around.

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