Mirages of Miami

What comes to mind when you think about Miami, Florida? Some people think of the beach; it’s warm sand and waters. For others, the thought of getting their hands on a Cuban sandwich with plantains excites their taste buds. And for some others, Miami may bring back memories of intoxicating Latin music and lively salsa dancing. But for me, Miami will always bring back memories of receiving a needle in my eye.

Following my diagnosis of LHON on July 3, 2014, my family and I scrambled to find a way to overcome the seemingly immovable obstacle which had been put in my path. Even though the doctor who diagnosed me said that there is no known cure for LHON, this did not stop us from exhausting all resources.

We learned about a clinical trial taking place at the University of Miami’s Bascom Palmer Eye Institute (ranked number 1 in ophthalmology). In order to participate in the clinical trial the patient had to have a specific mutation of LHON which could only be determined by a specialized blood test that took weeks to evaluate. I was back home in Colorado Springs when my mom’s colleague assisted in the procurement of my blood into multiple glass tubes. These vials were placed in a special shipping package and mailed across the nation to a testing center in New England. While they tested, we waited.

A few weeks later, I was back in Tallahassee beginning my final year of my Masters degree at Florida State University. I vividly remember walking across campus when I received a call from my dad. He shared that the test results had come back and that the mutation I had was the same one which would qualify me to participate in the clinical trial!

This was the first good news I or my family had received in months. To me, this felt like the beginning of a miracle. I could not stop crying and had already convinced myself that this clinical trial would be the cure to my affliction.

We sent the results to the research team and requested that I travel to Miami in order to allow for the medical team to determine if I would be able to participate in the clinical trial. Then, more good news! I learned in September that I would be able to visit Bascom Palmer in October!

In the beginning of October of 2014, Kate, my girlfriend of a week, drove me to the departures section of the Tallahassee airport early in the morning. She would return later that day to pick me up at arrivals. I flew down to Miami alone, and was somehow able to navigate out of the airport, get a cab, and make it to Bascom Palmer. Throughout the course of the day, my eyes were photographed with specialized cameras and dilated. I had blood drawn and then completed a multitude of visual tests. At the end of the day, I was told that they would be reviewing the information and most likely bringing me back to Miami in November for the injection.

I left Miami later that day feeling on top of the world. I called my parents to let them know the good news and we all shed tears of joy. We were all clinging to the thread of hope this clinical trial provided. I began to see a light at the end of the dark tunnel I had been in for a few months. My previous feeling of defeat was replaced with one of hope. I told myself that all I had to do was make it through November. Then, I would receive the injection and my sight would return. The knowledge of the upcoming injection, coupled with my belief of what would occur as a result, gave me the strength and fortitude to push forward through all of the difficulties of graduate school and life as someone who was losing more of my sight each day.

In November, I returned to my family home in Colorado Springs for Thanksgiving. While I was there, my parents asked me to sit down with them in the living room. My father shared with me that he had learned that I would not be able to go to Miami for my injection until January of 2015. The defeat I felt when I had originally been diagnosed returned all at once. My head fell into my hands and my eyes, which struggled to see, did not struggle to produce a stream of tears. 

Ever since my visit to Miami in early October, I had told myself that I just needed to wait until November and then this nightmare would be over. Now, I would have to wait another two months until I could receive the injection which I was confident would restore my sight. I called my girlfriend of two months and broke the news to her and she provided words of encouragement and support.

In January I called Phillip, the coordinator for the clinical trial, over and over again to establish a date to return to Miami. After many calls I was finally able to connect with him. This time, it was not the doctor crushing my hopes as I was told about my LHON diagnosis in July, not my dad squashing my dreams of the November injection, but instead it was Phillip, who shared that they would not be able to bring me down until March of 2015.

Another two month delay…

When I had initially gone to Miami in October, I still had enough strength to will myself to November. My resiliency was nearly gone when I learned about this latest setback. One of the few reasons I didn’t quit and move home was that I had already finished one semester with limited sight, and if I could do it again, I would reach the finish line of my graduate program. January was also when I began to exclusively use screen reading technology on my computer and phone as well as when I began learning how to use a white cane. Both of these skills allowed me to slowly become more independent and regain a sense of normalcy and control over my life.

Almost expectedly at this point, in March I learned from Phillip that I would not be able to come to Miami, and that it needed to be pushed back to April. 

But you know what? This time, the news did not sting as much. By this point, I had become accustomed to my lack of control over the situation. Also, I was less than two months away from graduation! I had nearly made it through an entire academic year of a graduate program all while progressively losing my sight. For the first time since my diagnosis, I found myself at peace and not fixated on Miami and the injection which awaited me. When I learned about the appointment being rescheduled to April, I gave up on Miami. This was not because I was frustrated or at a loss for hope, but rather, I had finally navigated the stages of grief and made it through to acceptance.

March of 2015 was the last time I desperately called Phillip asking about when I would be able to come to Miami for the injection. I had become used to my everyday with limited sight and was ready to move forward with my life.

Often, we become hyper-focused on someone or something with the belief that our attainment of this prized possession will be the source of water in the desert we have been seeking. These mirages fixate us, and regardless of the amount of failed attempts, we find ourselves unable to fathom the idea of “giving up” or moving on.

In his book Failing Forward: Turning Mistakes Into Stepping Stones, John C. Maxwell writes, “Why worry about the things you can’t control, when you can keep yourself busy controlling the things that depend on you.”

There is value in setting high goals and pushing oneself to achieving them even after failed attempts. In fact, for many, pursuits such as starting a business, mastering a sport, a trade or specialized skill, numerous attempts followed by failure should be expected. Each failure or success leads us to improvement and a greater understanding of how to be better. The relentless pursuit to improve and to master something is admirable and a quality many leaders possess. 

But, the pursuit of something which is actually out of reach, with the belief that only through its attainment will happiness be found can be very dangerous.

For me, from the beginning of my sight loss, through the call in March telling me about the appointment being pushed back again, I believed that only with the return of my sight would I live a happy life. For others, this could be a person, a job, or a car, a house, or a certain amount of money in your bank account. There is a distinct difference between the pursuit of someone or something and the pursuit of happiness. Happiness comes from controlling the things which are within your control, choosing to have an optimistic attitude, and doing the best you can with what you have. 

These things are all intentional choices, made on a minute to minute basis. They might not lead to attaining the worldly possessions, romantic relationships, or jobs you believed would bring you happiness. And, even if you were able to achieve that one thing you think would make you happy, chances are, it wouldn’t bring you any more fulfillment than the things you have at this exact moment in time. 

Once I stopped pursuing the return of my sight, I found peace and serenity. I began the process of living my life in the present moment, instead of focusing on the absolutely unknown future.

In April I received a call, but this was not a call from Miami, Florida, but rather a call from Blacksburg, Virginia. Virginia Tech’s Office of Student Conduct was contacting to offer me my first full-time position! 9 months prior when I had been told about losing my sight I had wondered if I would ever be able to receive an offer for employment. Now, not only had I been offered a job, but I had made it through a full academic year of a graduate program. My focus and energy were no longer pointed south to Miami, but North to Blacksburg. Life was good.

In June Kate and I hit the road to Virginia and left Florida in the rear-view mirror.

The next month was incredibly busy as I transitioned to a new job, in a new state, all while still less than a year after my diagnosis. I quickly forgot about Miami as I began to make friends, find hobbies, and enjoy the exciting adventure which was this new chapter in my life. At the time, Miami felt like someone who I had longed for, but who had never loved me back, and finally I could move on. 

That was, until the end of June, when I received a call out of the blue. It was Phillip. He asked if I could come to Miami next week to receive the injection. 

2 thoughts on “Mirages of Miami

  1. An excellent reflection on how to move forward in life. Many folks seem to live as if they were driving a car…but doing so by only looking in the rearview mirror. Life is ahead of everyone. Move forward. The thing that many seem to be handcuffed to is something from the past that truly is “bad”: physical abuse, verbal abuse, sexual abuse, poverty, lack of parents, bad parenting, gender, racial, sexual inequality. All are wrong. But we also all have a choice. To wallow in the past saying “Woe is me” and hoping for pity from others….or…to get up….get help…and move forward. Will it be easy? Absolutely not! I like this quote to end my comment: “A person does not drown by falling in the lake….a person drowns by not getting out of the lake.” So very proud of you, Aaron!

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