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Being a Patient Advocate is what I am most proud of

Being a Patient Advocate is what I am most proud of

I’m sitting here alone in my apartment, confined and imprisoned with anxiety.  It’s less than 24 hours before my fate is decided.  Will I be a Paralympian?  Am I going to Rio?  The IOC and the ITU will determine tomorrow the final 17 slots to be distributed between 3 male and 3 female Paratriathlon categories.  This distribution is based on rankings, record and the number of slots allowed per country, which is 2.  In the blind female category, there are already two American women who have qualified.  While my ranking is #6 in the world, and I have won two of my last three races and finished only 19 seconds back in second place at the Continental Championships, I am still the odd man out.  We have been told a number of different things- the Top 8 automatically go.  But not if you’re over that two man quota.  Then you wait for the ITU and IOC to elect you into that third slot.  And they could pick an athlete from another country if that flag isn’t represented at the Games and they want to encourage diversity.  Even if they may be ranked behind you.  UGH.

I have done ALL I can do.  The points are done, the records and rankings complete, the training hours logged, and the thousands of miles flown around the world chasing this dream.  I never dared to dream that I could be representing my country, this amazing nation, at the Paralympic Games as a blind athlete.  I honestly put so much power into tomorrow’s decision that I have chewed off every finger nail, cleaned every closet, purged my storage unit, bought a million tank tops to train in, caught up on every episode of the Bachelorette, Heartbeat on NBC and other mindless TV, paid every bill, groomed my guide dog a hundred times, took a mini break to see family, eaten the weirdest combinations of food, and broken out into rashes thanks to my autoimmune disease that doesn’t like stress.  It’s been the most productive couple of weeks, but also the hardest and most anxiety ridden of my life.

And trust me, I’ve been through the ringer before.  19 surgeries on my eyes, and constantly waiting for the ‘other shoe to drop’ with my disease where I suddenly lose my remaining vision, or the other systemic issues with my disease involving my lungs, adrenals and stomach makes for little peace of mind.  I’ve tried meditation, therapy, yoga, acupuncture.  But mentally?  This week has been the most difficult.  And it’s not my health we’re talking about.  Yes, it’s a life-changing event, but honestly, let’s put it into perspective.  IS THIS the greatest achievement of my life?  Looking back now, with all of this time to ponder, I think not.

If tomorrow’s decision doesn’t go the way I want it, will it define me?  Do athletics really say the most important things about Amy Dixon as a person?  I was reminded by a friend, that no, while it’s an incredible achievement to go to the Paralympics, it’s NOT the greatest thing I’ve ever done.  The greatest things I have ever done have involved helping others.  When I was diagnosed with Glaucoma, I was a scared patient rapidly undergoing terrifying and painful surgery after surgery.  But then I met other people online going through the same experiences.  I knew my years as a Uveitis (Inflammatory eye disease) patient would be useful to them for knowledge, and my background in Pharmacy could help.  So what did I do?  I started to help patients.

First it was a patient in Iowa who didn’t have access to specialists.  I contacted the Lion’s Club International, and we flew her to Boston for treatment, hosting her in my home and holding her hand through the arduous beginnings of chemotherapy, career challenges as a person with vision loss, and surgery.  Then I was introduced to a single mother, a domestic violence survivor, whose son had Uveitis and Glaucoma and was getting poor treatment at 17 years old.  A kid with a bright future, a soccer star, and angry and rebelling against his disease.  Again, I got them to the right doctors, arranged the funding, and mentored them through the process. My friend, a blind guide dog user, became inspired by my pursuit of triathlon, and contacted me to do her first 5K race.  I introduced her to guides for running, and within a year I watched proudly as she blossomed into a confident woman with vision loss crossing her first finish line on a sprained ankle in her very first triathlon.


Winning In Japan last month with Guide Susanne Davis

I have paired dozens of blind athletes with guides; Gotten free or donated my own equipment and wetsuits for those new to the sport.   Helped an international competitor from another country get a quality racing tandem.  Helped dozens of blind athletes secure funding to pursue their athletic potential or just race a local race.  I’ve spoken to families of kids with vision loss in Sacramento and at the Children’s Center for the Visually Impaired in Kansas City, letting them know that their kids are able to grow up and do the exact same things I’m doing and MORE.  I’ve given my heart to creating a camp this coming winter for blind triathletes to become not only participants in triathlon, but serious competitors on the national and international stage.  And my proudest moment happened when myself and a few other like-minded Glaucoma patients and specialists teamed up to form the Glaucoma Eyes International Organization last year to provide services and education to patients around the world just like these.  So, the answer is NO.  Getting to Rio is NOT my greatest achievement.

While hundreds of hours training, thousands of miles flown, and tens of thousands of dollars spent say it’s important, yes, that is true.  Would it be absolutely wonderful to see my name on that coveted list tomorrow?  YES. It would.  Having worked hard and invested a lot of time and money into getting to that #6 world ranking to secure my spot despite my medical challenges? It would make me so incredibly proud and happy.  But it is also not the only thing in my future to look forward to.  I know that my journey has inspired more people, both blind and sighted to become physically active and look beyond their own limitations to do so.  THAT is important.  Will I be sad If I’m not chosen?  YES.  Devastated?  Maybe I will feel that way for a short while.  But my future looks bright (pardon the pun).  I will be able to use my skills and discipline learned while training to be the best patient advocate you could ask for.  I will continue to save sight for people.  I will dedicate myself to other visually impaired athletes to help them reach the highest peaks of my chosen sport.  And I will consider Tokyo in 2020 after I’m successful in doing all of the above.  While Rio is a great achievement, I take solace in a profound NO; It’s NOT the greatest thing I’ve ever done.  Fingers, toes, and everything crossed that tomorrow I get the news I am praying for.  THANK YOU all for your unflagging support.  #LOVEANDGRATITUDE

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