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.
The following excerpt was written 5 months and 6 days after my diagnosis:
” My name is Aaron Reistad and I have made the decision to begin writing this story today, December 9, 2014. One year ago, I was just finishing my first semester of graduate school at Florida State University (FSU). I was excited to venture back to the great state of Colorado, and more specifically Colorado Springs, where I had grown up. During this trip home I would spend my free time playing cards and board games with my family, going on runs and finding other ways to stay in shape, watching television, borrowing a car to drive around and meet up with friends, and of course one of my favorite Colorado pastimes, going snowboarding through the Rocky Mountains. But as I am preparing to make this same trip back to Colorado Springs from Tallahassee one year later I am becoming more and more aware that this trip will be vastly different than it was a year ago. I will not be playing the cards and board games which have been played hundreds of times around our kitchen table. I will not be watching television in any capacity which includes missing out on my Denver Nuggets and Broncos. I will not have the crisp Colorado air entering my lungs as I run alone to stay in the physical shape I have grown accustomed to. I will not be borrowing anyone’s car to run errands, visit friends, or adventure into the mountains. Finally, the most difficult of all of these to admit, is that I will not be zooming down the snow covered landscapes as I create new trails in the fresh powder with my snowboard.
Why will this break be so different than a year ago? Why will activities that had become a part of my identity be abandoned? And most importantly, if the norms of my life were to be no more, what then what will my break and rest of my life look like?
On July 3rd of 2014 I was informed that my 23.5 years of 20/20 vision had come to a close and that the minor vision issues I was currently experiencing would only grow worse as I eventually became legally blind. Shock, confusion, sadness, and every emotion in the book swept over me in that moment. My immediate thoughts were that this could not be happening to me, there had to be a cure, and what was my life going to look like because of this. But the reality of the matter was that this was happening to me, there was no cure, and I had absolutely no idea what my life was going to look like.
As I stated above, today is December 9, 2014 and that experience in the doctor’s office was a little over five months ago. Since then, my minor vision loss has become major and I am nearing the point of complete vision loss. I am not the first person to be effected by this condition and I will not be the last. Also, I am not the only person to be rendered disabled in the middle of their life, when they have known nothing but life with a fully functioning body. Rather, I am Aaron, a man with a unique story. In the pages that follow, I will share my story as it has unfolded thus far. As I write this, I am still trying to understand what this means for me and my life. I hope that writing my story will serve many purposes. First, writing this while still in the middle of this storm will allow me to reflect and process what I am still going through. Second, I hope that my story will be a resource for anyone who is specifically affected by vision loss at some point during their life. Third, although what I went, and am currently still going, through are the experiences related to my loss of sight, everyone at some point in their life will be going through something. Will everyone lose their vision? No, but will everyone go through an event or time in their life where they feel like it is falling apart? Yes.
This story is not one of sadness and despair, nor is it a tale of total triumph. Rather, this serves as an account of how the events of my life unfolded during this period. As expected there are lows, but make no mistake, there have been countless highs. I may not currently be able to see as well as I could six months ago but I can see who I am, what I value, and why I am on this Earth more clearly now than ever before.”
This piece of writing is a perfect reflection of who I both was and wanted to be. Who I wanted to be was, a valiant warrior, who overcame all obstacles with ease while remaining unscathed physically and emotionally, all while living the seemingly normal life I had once had. Who I was though, was someone who did their best to put on a happy face and strong front, but who inside was terrified. This chapter of my life was etched into my life story with fear, despair, confusion, stress, and many tears. This was the darkest time of my life. Revisiting this piece of my own writing immediately takes me back to this fragile state.
In contrast, reading this piece two years later, makes me smile and gives me hope. My smile is one which a knowing parent might have when their child believes all hope is gone. A smile that an all-knowing, all-seeing observer has witnessing the trudge of the hero’s journey. As I listen to who I was two years ago, what stands out most is what I believed my life had become. With a foolish sense of confidence, and an understandable lack of experience and knowledge of what living life legally blind actually meant, I proclaimed the pieces of my life which had forever changed.
I have never been more wrong.
Let me point out to you exactly where I was wrong, and how my life has become more abundant, more fulfilling, and more beautiful…
When stating the ways Christmas would inevitably be awful, I said, “I will not be playing the cards and board games which have been played hundreds of times around our kitchen table.” This was partially true, but not entirely. Yes, there are certain games which we did not play as frequently that Winter, but to my surprise, my family had purchased a variety of games which did not require sight. Along with this, they punched holes in all 52 cards in order to make a deck I could play with using my sense of touch. There were still many games and family time spent around the kitchen table that Winter and every time I have gone home since. Knowing that my family was aware that our past time of playing games was important to all of us, and figuring out a solution, so as to not have me feel left out, meant the world to me. When I am home, I never feel as though I am less than or unable to be a part of something the whole family is doing, and for this I am grateful.
I believed, “I will not be watching television in any capacity which includes missing out on my Denver Nuggets and Broncos.” This is also only partially true. Yes, I did not use my eyes to enjoy the games as I once had. Instead, I used my ears. That Winter I began to use the radio when it came to sports, and this is something I still do to this day.
I knew that, “I will not have the crisp Colorado air entering my lungs as I run alone to stay in the physical shape I have grown accustomed to.” Yet again, only moderately true. Besides being on a treadmill, I have not ran alone since losing my sight. Instead, when I went home that Winter, my dad introduced me to the concept of running with a partner with each person holding a tether. To this day, I continue to use the tether my dad gave me that day whenever I run. Along with my dad, there have been countless others who have picked up the other end of the tether and assisted me in going for a run. Teaching someone who has not ran with me before how to properly use the tether is something I enjoy doing, because I am increasing my circle of running companions and friends. Since learning to run with the tether, I have completed two half marathons with my dad and girlfriend, and two other races, as well as countless other runs for fun.
I concluded, “I will not be borrowing anyone’s car to run errands, visit friends, or adventure into the mountains.” Two years later, and on the eve of heading home again for Winter, I can smile because this was the only statement from that time which actually turned out to be entirely true. I am thankful for my caring friends and family who drive me around, but, yes, I am still not driving anytime soon (hopefully I can revisit this blog in two years and say how wrong I was about this J).
With much gusto I was confident that, “the most difficult of all of these to admit, is that I will not be zooming down the snow covered landscapes as I create new trails in the fresh powder with my snowboard.”
Little did I know that less than three weeks after writing that statement, I would be putting on my hat and gloves, as I had the opportunity to learn how to snowboard blind. This sensation of going down a snow covered mountain without sight is quite different. I spent the day learning how to descend a mountain without sight, with my guide Nick. Nick was super friendly and beyond patient. We began at the base of the mountain learning the foundations, transitioned onto a bunny slope, from there to a full run, and the day finished off with me snowboarding solo with Nick giving me verbal commands. Although my sight had changed, the snowboard I stood on, the crisp Colorado air, and the mountains I was in remained the same.
The lesson I learned from all these thoughts, which were fabricated by my fear, is that there are so many different pathways to my dreams and no one path is better than the other. And most times, I don’t even know what path I’m on! There really must be a blind trust when we live in life’s hands. There will always be times of trial in everyone’s life, and sometimes, the path we believe we’re supposed to be on might be closed, or there might be a detour, or that road broke into pieces and fell off a cliff. Taking the road less traveled is uncomfortable because of the unknown; but only by accepting and embracing the discomfort are you truly able to reach your destiny.
Another lesson I am grateful to have learned is that mixing absolutes with capability is dangerous. I was struck by my statements of what I would no longer be doing. Thankfully, I am surrounded by family, friends, and a God who allowed me to break down these walls I had begun to build. I began to build a box around myself, and those around me said, “Absolutely not.”
A common phrase around my family is, “Speak what you want.” I love this, because doing so will change our perspective on what we are capable of, and when this happens, everything around us also begins to change. Doing the opposite of this, and speaking negative absolutes into existence, begins to create barriers in front of us and our dreams. Recently my dad sent me the following quote by Bill Hawkins, “You will either talk and think your way into what you can do, or talk and think your way into what you can’t do.”
Reading my words from two years ago allowed me to remember who I was, understand how far I have come, and light a fire of passion and excitement for all that is to come. Hindsight is 20/20, or for me, 20/1600.