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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. 

5 Years On The Road Less Travelled

5 years ago today, I sat in a doctor’s office at the Wills Eye Hospital in Philadelphia with my dad as a doctor informed me that I had LHON. The sight loss I had been experiencing over the last few weeks would only get worse until I was potentially completely blind, and there was no known cure. In some ways that day feels like yesterday, and in other ways it feels like a lifetime ago.

Some people may be aware of what I do for full time work, and others may not. I currently work in Student Conduct at Ohio State University. This means that I meet with students and student organizations who have potentially violated university policies. No, I am not the principal’s office. The work is very counseling based and most students leave feeling happier than when they arrived. I truly enjoy being able to assist students reflect on times where they may have made a mistake and help them set goals for their lives.

Every now and then, a student may have done something egregious or violated university policies in a minor way too many times which leads to them needing to take a break from being at OSU by being suspended. You might be thinking that this sounds really harsh and not very counseling based. But, you would be surprised to learn that for many of these students, they are able to see the value in taking a break from school in order to work on themselves. Of course there are also the students who will fight to the end to not be suspended because they do not think it will serve them in any way and that they don’t deserve it.

I have come to learn that so much of the resistance that individuals have stems from fear. We have socialized people to believe that college is something you do after high school, it should take four years, and taking a semester off is unacceptable. Taking a break from school was not a part of their “plan”, and if they miss a semester they will be “behind.”

But, who’s to say what the “right” path is and how long it should take you to get where you are going? 

I meet with every student who is returning from a period of suspension. At the end of our conversation I always ask them, “If you could go back in time and be able to not go through everything which you have with your suspension, would you?”

Of the over 50 students I have posed this question to, only one has said yes.

All of the others speak about how going through this difficult experience and breaking free from what they have been socialized to do, led them to have a better understanding of themselves, a deeper appreciation for being at school, and an increased level of maturity. As someone who met with them prior to and following their suspension, I can also hear and feel all the growth they have experienced.

I am sometimes asked, and often wonder to myself, if I could go back in time and never experienced losing my sight, would I?

Having my sight back would allow me the freedom to drive again, which is something that would be valuable now and especially when, and if, Kate and I have a family of our own. The ability to see would make my everyday at work much easier, as there are still many aspects of being in the professional world which are difficult to navigate no matter how many accommodations are made. Full sight would open up a variety of career opportunities which I could apply for and succeed at without the concern of whether or not I was able to do the job duties. 20/20 vision would make the prospect of returning for a PhD or going back to school more realistic. A life without LHON would mean seeing the faces of my loved ones, the ability to play sports and board games again, and the opportunity to experience the beauty of the world.

While all of these things are valuable, I, like the students reflecting on the unplanned break from school they were forced to take, can also understand all of the ways this experience has served me in a positive way.

Now, more than ever before July 3, 2014, am able to appreciate the simple things and the small blessings which previously would have been overlooked. After going through the most difficult and traumatic experience of my life, a “normal” day is all I need to be happy. Along with this, the newfound appreciation extends to relationships and experiences. Spending time with friends and family was something I used to enjoy, but is now something I cherish. The ability to go for a hike and do CrossFit means so much more than it used to.

This shift in perspective has changed the way I operate in the world and interact with those in it. There is no better example of this than my marriage with my wife. Kate entered my life the month after my diagnosis and the first time we hung out I was able to get away with not telling her what was happening. I was eventually forced to tell this brand new woman who I was interested in what was going on with my sight. Over the last five years, our relationship has been filled with highs and lows as any relationship would be, with the added layer of navigating the loss of my sight together. Sure, our relationship may have been easier if I had full vision, but who is to say we would even be married if not for the diagnosis? Everything we have gone through has not been easy, but it forced us to be vulnerable, learn how to effectively communicate with each other, be patient, and so much else. I do not believe that if Kate had met the Aaron with 20/20 vision that she would have liked the man he was, and we would not have worked out. Kate came into my life when I needed her most, and my maturity and values were growing alongside her arrival in a way that prepared me to know what it takes to be her husband.

I believe this same growth in maturity and values coupled with the alteration of my perspective is what allowed for me to be selected for my first full-time role at Virginia Tech less than a year after my diagnosis. In the same way I am not sure if Kate would have picked to date or marry the Aaron with full sight, I am not confident that the Aaron with full sight would have stood out or been mature enough for Virginia Tech and now Ohio State. The loss of my sight has made me incredibly empathetic and adaptable – character traits which cannot be taught and have allowed for me to enjoy and find success in the work I do. 

Losing my sight and coming through the other side, gave me a story filled with life lessons for all which I have been able to share across the nation. This work began when I was selected to serve as the graduation speaker for my Florida State classmates. If you had told anyone in my class (including myself) the year prior, that Aaron Reistad would be our class speaker, I and everyone else would not have believed you. When my classmates chose me, I knew that I had been picked for a reason, and that I needed to share my story. This group of friends who believed in me sparked my courage and passion to share my experiences and life with a audiences from New York to California. None of this would be possible if I did not have a story to share.

In the last 5 years I have gone through the most difficult times of my life. There would be numerous benefits to never having gone through it all and I think about these often. At the same time, July 3, 2014 to July 3, 2019 has brought me a deeper appreciation for life and all of it’s little blessings, an increase in maturity, a well-rounded perspective, an incredibly strong marriage, wonderful jobs, and the opportunity to travel the nation sharing my story.

Just like the students who are scared to be suspended due to the fear of their plans changing unexpectedly and going on a different path than most others, I too was crushed to learn that my life was taking me down a different trail than everyone else I knew. I had been socialized to believe that only with my sight would I be able to find success, happiness, and live a life of purpose. But, I never could have imagined how taking a new path could have led me to a destination which was better than my original plan.

So if I could go back 5 years and have none of this happen would I?

I don’t think I would. Everything I have gained and all the ways I have grown, have improved the person I am and the life I live. My life today, transcends my life with 20/20 vision. 

Rosy Retrospection

rosy retrospection

In my previous blog, 5 Things I Took For Granted When I had My Sight, my first sentence stated, “You never know what you have until it’s gone.” But, what if I was wrong? What if we know exactly what we have while we have it? What if, while living in the moment, we experience the most honest perspective we will ever have of that exact time? What if no longer being there, and reflecting on the “good old days”, makes us misremember what it was like when we were actually there?

We have all been guilty of looking back on the past with “rose colored glasses”. A study from the Journal of Experimental Social Psychology discovered that after experiences were had, participants tended to remember their trips and experiences as being much more fun than it actually was at the time. Have you ever gotten out of a not-so-good relationship and looked back, only to remember the good times? Have you ever gone on a mediocre trip, but looked back fondly at the photos as if all your good times only lived in those moments?

Rosy Retrospection refers to the psychological phenomenon of judging the past disproportionately more positively than the present.

I recently caught myself wearing my own pair of rose colored glasses.
Continue reading “Rosy Retrospection”

Lost My Sight, Gained My Vision

Adobe Spark

Like most in this world I was not born blind. Similarly, the years of elementary, middle, high school, and undergraduate education, were all filled with clear sight which neither required contact lenses or glasses. However, less than a year after arriving in Tallahassee for graduate school, this would all change.
When I arrived at Colorado State University, (CSU) I, like most first year students, was excited and nervous to begin a new chapter in life. The previous years of high school were filled with athletics such as cross country and wrestling, activities like student council, and many high quality relationships. Upon graduating from high school, I felt on top of the world! Not long after this, the transition from high school to college, from home to foreign, from senior to freshman, and from being a big fish in a little pond, to a little fish in a big pond, transitioning from familiar to new people, made my first year at CSU look starkly different than my preconceived ideas.

Continue reading “Lost My Sight, Gained My Vision”

Tears to Cheers: A Dad’s Journey

 

By: Scott Reistad

“Every adversity, every failure, every heartache carries with it the seed of an equal or greater benefit.”  Napoleon Hill

I’m sure many have either heard, or even used this quote; however, I find it to be a bit incorrect.  For me, a more accurate version of this quote would be, “Every adversity, every failure, every heartache carries with it the seed of equal or greater benefit…IF YOU LOOK FOR IT.  If I don’t actually look for the benefit, many times it remains hidden.

I know many people who have dealt with adversity, failure, and heartache, and instead of growing from it, are mired in sorrow, regret, fear, and anger.  Unfortunately, this quote can also be used as a balm that good-hearted people say tritely when they don’t know how else to respond to life’s difficulties and unfairness.  And most challenging of all is this:  It is easy to say to others, but when life has sent bad things to you, it is a much harder pill to swallow.

And so begins a journey into my thoughts and feelings as to how I have had to work through tragedy and heartache in my own life.  With one of these being the tearful journey I have had to struggle through when my son Aaron, lost his vision to Leber’s Hereditary Optic Neuropathy (LHON).

I am a firm believer that one chooses their attitude at all times.  (I know…I know…there are chemical conditions that can arise in a person’s brain where they are predisposed to being depressed, or anxious, and that is not some thing that one can “choose” to not have without medical help.)  However, I do believe in the quote attributed to Abraham Lincoln, “Folks are usually about as happy as they make up their minds to be.” I also believe that you get what you look for.  In other words, if you are looking for bad in the world, you will find it; but if you look for good in the world, you will also find that.

It’s kind of like when you buy a new car, and then suddenly you see that same car everywhere.  Why?  Because suddenly you become aware of that style of car, so your mind notices cars similar to yours, even though before you never saw them and now suddenly you see them everywhere.  These quotes all seem simple when one is merely talking “theory”, but when it comes to “real life”, it becomes much more difficult.

Little did I know, two-and-a-half years ago, that all this “theory” would come crashing down on me. I was forced to find my way out of the darkness that had enveloped me with the news of Aaron losing his sight.

Continue reading “Tears to Cheers: A Dad’s Journey”

Grounded in Perspective

In her powerful book, “Daring Greatly”, author Brene Brown perfectly summarizes the power of vulnerability;

“Owning our story can be hard, but not nearly as difficult as spending our lives running from it. Embracing our vulnerabilities is risky, but not nearly as dangerous as giving up on love and belonging and joy—the experiences that make us the most vulnerable. Only when we are brave enough to explore the darkness will we discover the infinite power of our light.”

When I first began to lose my sight, I wish I would have started connecting my head and my heart on paper. Divulging my feelings, fears, ideas, expectations, and all the other things. I wish I would have been able to capture my raw emotions in the exact moment they presented themselves. I wish I would have been able to convey the difficulty I had wrestling with my blatant, extreme diagnosis. I wish I could have described in detail my fears as my entire life was being flipped upside-down. I wish I could have written these words for you, my reader, but also for myself.

I wish I could tell you that I made some sort of conscious decision not to put pen to paper, or that I was busy living life to the fullest,  but this is simply not the case. The truth is, I was terrified. I was nervous to begin dissecting the confusion and sadness of my experience. I was frightened to admit this was my life. I was not prepared to be anything but the physically and emotionally strong man I presented as. I was afraid to identify my own words with the reality of the diagnosis. I was worried that acceptance was my only option. And when it came down to it, I was scared to be scared.

I think journaling seemed daunting to me because I felt I was tackling the trauma in small pieces. I wanted relief. I wanted to regain hope, and find some sort of healthy perspective around my distress. I wanted to have the solution to my problems in black and white, with a beginning, middle and end, bound by a hard-cover, and made sense of.

So, I began to write; I began to write a book.  Continue reading “Grounded in Perspective”