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What a Difference a Day Makes

A mother’s love is far reaching and intense. She has brought life into this world and will do all in her power to nurture, cherish, and love her creation. She is a mother, and also a daughter, and sometimes a spouse, sister, grandmother, and friend. When my mom’s own mother, and eldest son, both received life changing diagnoses, not only were they affected, so was she. I am proud to be the son of such a strong and loving mother, who has done everything in her power to care for me through the entirety of my life, and especially throughout the loss of my sight.  She is both a marvelous mother, and wonderful writer, who has embraced vulnerability by putting pen to paper. Thank you for being my mom and writing this powerful piece. Please take the time to read my mom’s blog, What A Difference A Day Makes,” and get a glimpse into  her  head, heart, and soul.

By Guest Blogger: Marie Reistad

Throughout my life, there have been defining moments of great joy, and other times where I have been brought to my knees. Some of the joys have been the day I got married and the birth of my 3 boys. One defining moment that brought me to my knees was July 3rd, 2014…a day I will never forget. A medical diagnosis would change my son’s life, my mom’s life and my life, as I knew it.

In the spring of 2014 Aaron had told us he was having trouble seeing so we encouraged him to get into an eye doctor, He had always had good vision, and it seemed strange that suddenly he was having issues. After his eye exam, Aaron was told his optic nerve was swollen. After a tapering dose of steroids was unsuccessful in resolving this issue, he was referred to a neurologist who ordered an MRI. In the mean time, I was looking up “swollen optic nerve” online. I discovered many things about it but the ones that scared me the most were a brain tumor or Multiple Sclerosis.

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5 Things I Took for Granted When I Had My Sight

“You never know what you have until it is gone.”

As cliché as this saying is, the principal of this message is exceptionally true. Cherishing each and every component of life is not a very common practice in our world today. This is because our frame of reference is limited to personal experience. We take things for granted. For 23 years, I did exactly this. I was guilty of taking for granted the miracle of sight. Today, I do my best to treasure the pieces of life which can be easily overlooked.

***Disclaimer: This post is not intended to be a sob story or to say my life is lesser now because of my lack of sight. Instead, I want to offer a perspective of someone who previously identified as able-bodied, and now identifies as disabled. My hope is to help generate a deeper appreciation for all that your eyes provide.***

As surprising as this may be, if there were a way to go back in time and have the opportunity to keep my sight, I would not choose to do so. A forthcoming post will be dedicated to providing contrasting insight into the top 5 things I have gained because I lost my sight.

Here is a list of the top 5 things I took for granted when I had my sight:

  1. Being a Member of a Privileged Identity Group

 

Initially, when I was thinking about the things which I took for granted, my mind immediately went to the material objects which have since changed or been forfeited due to my loss of sight. And, more than anything, it is the material things which most people who have not lost their sight immediately jump to when thinking about what must be the hardest part.

Sometimes when I tell my story to someone who has their vision, their initial reaction is, “Oh, I am so sorry,” with a tone of sympathy and sadness. I believe this unconsciously stems from the recognition that having full vision is a privilege, and I have had my membership card for this popular privileged social club, where the majority of people spend time together, taken away from me. Privilege is having unearned benefits and advantages afforded to people who fit into a certain social group. For some, having white skin is a privilege, for others being a male is a privilege, and in my first 23 years of life, having full eyesight was a privilege. To me, privilege is the ability to walk into a room, around town, or work and be surrounded by others like you and to be treated equally.

I understand that the idea of privilege can be a touchy topic for some, and in the other areas of my identity, I still have a high amount of privilege. I own that. I do miss the days of walking into a social setting and looking around (pun intended) and feeling comfortable because of the subconscious awareness that the others in the room were similar to me. I, like many others, am no longer afforded this luxury. Imagine that all of your closest friends, your family, those you work with, and 99% of the world are all members of the highly popular social club I previously mentioned. Although they know that you are not a part of it, there is nothing they can do to get you a membership card. Also, because not being a part of the social club is so rare, the way in which others interact with you is as though you are a part of the club, because others do not understand that those who are not in the club might interact differently.

The intent here is not to shame or guilt trip those who have the privilege of full eyesight. Instead, if you belong to this privileged group, recognizing the comfort and luxuries afforded to those with privilege can be a powerful exercise; and I hope to empower those with privilege to act.

 

  1. Living in a World Designed For Me

 

If you are ever curious about the feeling of living in a world which is not designed for you, I implore you to spend one day with a blindfold on. If you are truly bold and want to dive head first into the deep end, try it during a work day. I’m sure there is a lot of fear associated with this. What are some of the immediate struggles which come to mind? What kind of mentality do you think one has to have in order to be productive being visually impaired? Let me walk you through a bit of what it feels like to live out your day this way:

You wake up and go to pick out your clothes. You want to wear matching clothes and maybe you have colors or specific clothes in mind but there is no way to tell what is what. Is this your purple or green shirt? Are these your gray or brown pants? How will you tell which is which and if it all matches?. Then you go to get in the shower. You have to know the feel of which bottle is shampoo, conditioner, and body wash and so you have very specific places for each. Then, you go to make breakfast. Is this food expired? What do the instructions on the box say for how long to put it in the microwave? Where is the ingredient you are looking for? Which of these spices is the one you are looking for? If you are cooking with a meat, can you determine when it is done? You are not feeling too hot today so you want to take some DayQuil? but which of the boxes of medicine is it? And once you found the one that feels like it are you sure it is not NyQuil? Finally, you might want to make sure you look presentable, but the mirror is no longer an option so here is hoping for the best. And you have not even left the house.

as you can only imagine, the rest of the day follows suit. From being greeted in the hallway by a voice you do not recognize, to being handed a sheet of paper and asked to read it, the world which you are imagining is a reality for many. If you were so emboldened to attempt this challenge, your ability to be creative, problem solve, and adapt were probably at an all-time high. Along with figuring out ways to make it work, I am fully aware of the feelings of exasperation and helplessness which comes with living in a world not designed for you.

Although I, and most others who live in a world not designed for us, have figured out ways in which to adapt, there is an emotionally exhausting toll which comes with this on a daily basis. With the constantly advancing technology of the world, coupled with the growing capacity for inclusivity, right now is honestly the best time to be blind. What I mean is, I am able to fully operate my cellphone, go to movies, and even perform all functions of my job because of the advanced and inclusive state of the nation we are in right now. For this I am truly grateful.

However, I do miss going to a restaurant and perusing the menu on my own, enjoying apps such as Snapchat, and spending the day in Barnes & Noble reading a variety of books.

If you decided to participate in my aforementioned challenge, or even just closed your eyes and tried to imagine the parts of your day which would change, I hope you recognize the gravity of taking the blindfold off, because not all of us are able to.

 

  1. Faces

 

Your face is uniquely beautiful. It can light up a room, express happiness and joy when you see a friend, and speak unspoken pain when you experience sadness. Faces are how you recognize someone, they can be used to gauge one’s mood or tell whether or not someone is listening. Faces are a way to show how the forces of time have evolved your features. They are the reason Skype and FaceTime were invented, and without them, selfies would be obsolete.

Through losing my sight, I have become much more perceptive to the way in which people speak. I am more keen to pick up on their tone, word choice, and am truly able to emotionally feel their attitude. My empathy is how I see.

Although I have been able to compensate in these ways, I still find myself missing all of the beautiful faces of this world and especially those I am closest to. I have not seen a new face in over two years. To say this has been difficult is an understatement. When I have met new people in these last two years, I usually pair their personality and voice with what I can see of them, (I am not completely blind)  and match it with someone’s face I know well. Sometimes, I will ask about their celebrity doppelgänger. This works well enough and some people get a laugh when I show them a picture of who I imagine they look like. But it’s just is not the same. I miss seeing smiles. I miss being able to look at pictures of my loved ones. And I mostly miss being able to make eye contact with someone as we gaze into the windows of each others souls.

Whether you are looking in the mirror at your own face, walking around and notice a face you do not know, or looking into the eyes of a loved one, smile because you are seeing.

 

  1. Driving

 

Driving means independence. It allows you the ability to go wherever you want, whenever you want. It provides you with a feeling that I often miss. Oh what I would give to be stuck in traffic! Windows down, and the music of my choice blasting through the speakers. It has been over two years since I’ve opened the driver’s side door, turned the key in the ignition, heard and felt the engine come to life, and experienced control over the steering wheel.

These past two years I have had so many wonderful friends who are more than accommodating with assisting me in getting places. I have also grown quite fond of walking places and learned how great and helpful public transportation can be. But, whether it is getting a ride from a friend, waiting for the bus, or using Uber, I am always on someone else’s schedule. More than my car itself, the loss of full independence is one of the hardest things to deal with. So next time you are in your car, sitting in traffic, take a moment to look around and smile; because the road is yours and where and when you are going is up to you.

 

  1. Playing Games

 

Games have always been something which brought my family together. The bond of playing games allows love, relationships, and connections to grow stronger at the kitchen table where thousands of hours were spent playing hundreds of games. We played it all; board games like Risk, Monopoly, Settlers of Cataan, and card games like Casino,  Rage, Hearts, and more. This was a way we spent so much quality time together. My friends and family have been so wonderful with finding games which are easier to play and that you might not need vision for, and for this I am truly grateful. But I do miss the games we used to play and the laughter and love which came with them.

Along with this, the way in which I enjoy athletic games has changed. I recently told someone that on the day of a huge football game this Fall, I would instead be attending a concert. This surprised them because they know how passionate I am about athletics. I still enjoy sports, but I would rather enjoy the game from my couch while either listening to the TV or the radio than go to the game itself. Although the atmosphere is still fun, going to games in person does not provide the same entertainment as it used to. So whether you are behind home plate or in the nose bleeds, take a moment to appreciate everything you are seeing.

The intention of this post was both to provide information regarding my experiences of living with a visual impairment, and to invoke a sense of appreciation through reflection. These top five are reflective of my lived experience and I do not speak for the rest of this community. You do not know what you have until it is gone is true, but waiting to appreciate something until it is gone does not need to be.

For We

If you witness me walking with my white cane you have been given an opportunity.
You may choose to believe this stick is solely for me.
You may view the cane as a reason to question my ability.
Reflect on this entire moment being centered around your ability to see.
For if you do not, the symbol I walk with, has lost the power of being for we.
After six months of progressively losing my sight, my vision had gotten to a point where I did not feel comfortable or safe walking in unfamiliar territory alone. This severely limited the amount of independence I was afforded and the frustration which stemmed from feeling trapped was unbearable. I did not want to start using a white cane, which I had previously seen other visually impaired or blind individuals use. I believed that to walk around with this piece of equipment was equitable to shouting to everyone, “Hey! I am blind!.” Although this is exactly who I was, I was not emotionally ready to publicly share this identity with the world. However, there came a point where the desire for independence won the battle over my fear and shame. When I decided to lean into the vulnerability, not only did I gain a degree of my independence back, but my life became astonishingly more simple in a way I had never foreseen.
As I have now been using my cane (which I refer to as my stick. Because for me, the word cane creates images and thoughts which are different than the function which I use the device for) for over a year I have learned that it is as much for me as it is for others. For me, the stick serves as a means to signal if stairs are coming up. It allows me to identify where sidewalks are and if I am about to walk into a puddle. Most importantly, my stick allows for those who I encounter to be aware of my identity.

Continue reading “For We”

Finding Purpose

This blog was originally written for my friend and mentor Zach Mercurio’s website.  Zach  created Purposespeaks.com  as a way to inspire individuals, leaders, and organizations to deliver their authentic purpose to the world. Please check out some of the amazing work Zach is doing and I hope you enjoy this blog.

One of my favorite movies of all time is Coach Carter. The true story of a high school basketball team from a rougher area of town, and their basketball coach who refuses to hold the men to anything but the highest standard. During the movie, one of the athlete’s cousins is shot and killed during a drug deal. This player, Cruz, is an athlete who is passionate about the sport, but more stubborn than the rest when it comes to their coach’s rules as evidenced by his choice to quit the team twice. This shooting, combined with Cruz pushing his teammates, coach, and sport away, forces him to recognize that he has lost everything which gave him his identity. In his darkest moment, he turns to his coach and begs to be allowed to rejoin the team. One of the most memorable moments of the movie is when Cruz rises from the ashes and delivers a powerful speech to his teammates and coach. He quotes Marianne Williamson as he relates, “It is our light not our darkness that most frightens us. Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure.”
It is inevitable that at one and most likely at many points in your life you have felt inadequate in both major and minor ways. Leading up to these moments, we feel as though our purpose in life  is clear with no foreseeable obstacles in our way on our path to greatness. But then, something happens and the perfect plan for us and our lives is flipped upside down. I truly believe that these moments are the most crucial and identity forming times in someone’s life. For it is in our moments of inadequacy where our purpose feels gone. That we are forced to answer one of the most difficult questions “Who am I.” I agree with Williamson’s idea of our greatest fear being that we are powerful beyond measure, but more firmly believe that we are only able to truly understand our power through feeling inadequate.

Continue reading “Finding Purpose”

Something Lost

Have you ever lost something that was both very valuable, near and dear to your heart? Maybe it was something of material such as your phone, wallet or purse, or your keys. Maybe while out at a park, or some place else, where there are many things happening all around – you lose your dog, younger sibling, or even your child. At first, you try and remain calm as you reassure yourself that you know your something has to be around here somewhere. You look in all of the places where it should be only to come up empty handed. You become slightly more worried. You begin asking others if they have seen what you are looking for, and their lack of knowledge only adds to the worry and frantic, which is beginning to consume you. As the search continues to no avail, the fear of having lost this item becomes a reality; sadness, grief, and hopelessness wash over you like a wave.

For most, this search ends positively. Your wallet was at the restaurant you had eaten the night before, or your child was playing hide and go seek with others the whole time. But for a select few, no matter how much time, energy, and resources have gone into locating this item of utmost importance, there are still no answers.
This experience of losing something of high value began for me a little over a year ago as I progressively lost my vision due to a rare hereditary disease known as Lebers Hereditary Optic Neuropathy (LHON). From June of 2014 to November 2014, I went from never visiting an eye doctor and having 20/20 vision, to having what I describe as now having 10 percent of my vision and being legally blind. All of those emotions, which are associated with losing something, were very much a part of my life, but this was not something that was easily replaceable. Along with this, I am reminded on a daily basis of what I have lost, not only through how I physically see, but also in the ways in which my life has changed. Getting around, watching movies, and interacting in social gatherings are all things I still do but are just a few of the numerous ways in which what I do now looks and feels very different. Now, do not get me wrong, different is not always bad. This year has been the most difficult experience of my life. My adaptability, my supportive friends and family, and most importantly, God, have allowed me to have and participate in every activity I would with full vision, and possibly, even more. I am employed, participate in Crossfit, go running (with a partner and a tether), read books (audio books are awesome!), cook (I make a mean stir fry), and even go on hikes. Although these outward events and activities have, for the most part, been unaltered, my inner being has changed dramatically. I have become much more mature as often happens when one goes through something traumatic. My view of myself, others, and life in general has shifted. Overall, I am emotionally stronger than ever before.

Part of me wishes I would have began blogging, or at least journaling, about this experience the minute I was made aware of what was happening to me. To have captured the raw emotions of someone who was progressively losing their vision, and the struggles and triumphs that came along with this identity-changing experience is the stuff that makes pages turn. But as I think back on all of the reflection through writing that has not occurred over the past year, I am reminded why. Writing down any of what was happening would have forced me to come to terms with all of the emotions that came with it. It would have reminded me that this was not a nightmare I could wake up from.

So why have I chosen now, over a year since all of this began, to start reflecting and writing about this experience? There is a small possibility that the thing I lost – the item I searched everywhere for, the thing I asked others if they knew of it’s location, and which I eventually gave up on ever finding – could be found once again…