Holly

My name is Holly and I am a second year at the University of Chicago. I am 19 years old. I was born with Bilateral Retinoblastoma, so I was born with tumors in both of my eyes. I was treated with a number of treatments for 2 years, and because of that I am legally blind in my left eye and have damaged vision in my right eye.  I wear contacts, but my vision is only correctable to a certain acuity. With my right eye, I came in here with about 20/80 vision. I had done vision therapy in the past, but it only trained the muscles in my eye. I had done that so that I could drive legally unrestricted. I had gotten down to 20/40, but because it was only muscles training therapy, I regressed back to 20/80. I definitely noticed that in my inability to read a lot of things at a distance. With my left eye, I never actually had a measureable prescription. I was just told that I was legally blind. I could kind of see fingers, shapes, and colors but in general it was a very voluntary movement with my left eye. I had to “turn on” my left eye, almost like a light switch. Once I came in I was measured at 20/640.

My right eye is the only eye that I use to function, so I don’t really have depth perception. I have monocular cues that I have used to create depth in the world, but I have no understanding of what everyone else sees.  I guess growing up, I felt that the most in that I couldn’t really catch things that well, so gym class was really hard. Or seeing a 3D movie. Judging distances, I’ve just had to figure out how to do it on my own, but I feel like I can’t do it the way everyone else does it. As a kid I was really stubborn, so I refused to wear glasses. My vision was over 20/100, so everything was blurry. But because you’re a little kid, you don’t really know. So I had one eye that was really fuzzy, but that was kind of working. When I was able to get contacts, I only wore a single contact in my right eye and I corrected to about 20/80. I could read. My close up vision was good, so I could read things fine. In school I sat at the front of every classroom. Textbooks I would hold really close to my face. As a kid I sat right in front of the TV, I could never sit on the couch.

In general everything had to be close to my face. Making eye contact was the hardest thing for me, being self-conscious about that. I had a lazy eye originally in my left eye where it would drift off and I would be cross eyed looking at people. As a little kid I wouldn’t know I was doing that and people would think I was trying to be funny or disrespectful.  I had a corrective surgery when I was 7, so that my lazy eye would follow the right eye.  It was always a little bit off still and would drift. Because of that, when I was making eye contact with people, they would always look over their shoulder or behind them. They would get a confused look on their face. I recognized that they didn’t know where I was looking and that it made them uncomfortable. When someone else is uncomfortable, you get uncomfortable, and everyone feels awkward. So, making eye contact definitely is something that I’ve had to learn to try to do the best for myself. At the same time, I can’t do it the same way everyone else does. Trying to have a conversation, especially going into being an adult professionally, has always been something that inhibited me. Also, with judging faces, I can only recognize somebody at about a 7-10 foot distance. I can see clothing and hair type or gender. I could say, “I see this women with curly hair, and I know it’s my mom.” Or, “I see this tall guy, and I know it’s my brother. “ But for me to recognize students at school or friends of mine, I can’t see someone on the quad and say, “Oh hey, how are you?” Like I said, if they’re more than 10 feet away, they’re just not there. I feel like I miss out a lot socially because of that. Or even if someone on their phone has something, and they say, “Hey, look at this!” I can’t. It’s too much work for me to look at it and see it. So I just try to fake it and let the moment pass. Also, I don’t really read anything these days because it is too much work. At the University of Chicago we have hundreds of pages of reading; it’s a really rigorous course load. I take a full load but I do all my reading auditorily because I can’t keep up. I read slower; I only read with one eye. I don’t know how other people read with two eyes.  I have no conception of it myself.

I am currently a MS2 ROTC cadet, but I am not contracted, which means that I do everything that all the other kids at my university do that are in the ROTC Army program. I was looking at getting a scholarship and I wanted to sign the paperwork so that I could serve in the army once I graduate. I was told that I had to do a medical, and because I have run into issues like I said with driving, I knew there would be a vison test and I wanted to understand what that was all about. I was told that I had to go see a doctor that they would assign to me and that I would have to pass these vision tests. I did all the research that I could to try to figure out if I could study for the test or practice. I was assigned to Dr. Lorenzana, and at that point, I knew nothing. I just knew that this was some sort of eye doctor. In my research I saw that not only does she do ROTC physicals, but she has a Vision Therapy practice.  That actually made me nervous because I knew she would know that I have a problem. I came in for my appointment I was really nervous and sick to my stomach. I didn’t know how it was going to go. I started doing all the different tests for ROTC and it wasn’t just looking at my acuity at a distance and reading the eye chart. There were a number of tests that I went through and I did them with one of the interns. Throughout the whole thing the person that was testing me was really nice about it. She’s not allowed to say anything about how well I was doing, but I couldn’t see anything with my left eye and here I’m trying to read thing and detect shapes and colors and I had no idea what was going on. At that point I was just trying not to cry. Then I go in and sit down with Dr. Lorenzana and she was supposed to just go over all the results and look in my eyes.

One of the memories that are burned in my brain was when she looked down at my two prescriptions from each of my eyes. She looked at my right eye and she looked at my left eye prescription (at this point she knows nothing – she doesn’t know that I’ve had cancer, or that I’m legally blind. She just knows that I am one of the many ROTC cadets that come in every day.) and she said, “Your prescriptions are not the same”, as she had a huge confused look on her face. I was still trying not to cry and she asked, “Do you know that?” I told her yes and she looked at my mom and at me. Then my whole cancer story came out. I think I was crying at that point. It was a moment because it is my life and I have been constantly been prompted with challenges.  I am somebody that is a fighter and a go getter. I have been able to adapt to where it is easier to try to jump over hoops and get through them then to talk about my problems. So she told me about the program.  I don’t want to say that I was hesitant; I actually more wanted to jump right into things. The vision therapy that I have done in the past had been training the muscles in my brain. With the research that I have done online it had said she is one of a kind and that she has created her own program. I read through all the accolades and realized that it was not the vision therapy that I had done where I just looked through some glasses and was tracing letters.  This was going to be different. I feel like I was sold on becoming a part of this even before she could tell me what she could do. This was something I was trying to do to meet the ROTC standards so that I could join the Army, but at the same time, it was something just for me to do as a person to change my life. Like I’ve mentioned all the challenges I’ve had, I can’t read anything or see anything. To do anything to change that would be really meaningful for me.

When I started Dr. Lorenzana couldn’t make any promises because I have a lot of scare tissue in my eye, which is what has made my vision uncorrectable in the past. So she told me that this was going to be a learning experience for all of us and that we would see what happens. My therapy plans was to start with strengthening my left eye, which is my worse eye, and then addressing the right eye after. To first get the non-dominate eye as good as it can, then introduce the dominate eye, and then let them grow together. She was continuously stressing that we wanted to strengthen neuropathways. When I first started it was all about getting my left eye to “wake up” so that it was non-voluntary and “on” all of the time. That way I could see everything. I wore a lot of strobe glasses so that it could get started. One of the weirdest things that I noticed was that I would feel things on the right side of my “brain” (I’ve taken a number of psychology classes through high school and college so I knew that in the back of your brain is where your occipital lobe is. Specifically, I knew that the right side controls the left and that the left side controls the right) When we were isolating the right eye, I totally started to noticing in the back of my brain that I was feeling pressure, like the muscle was working. It was really strange for me. I noticed I could feel my brain working and trying to make the connections. Through the program my left eye has come alive. I’ll be in my everyday life and I’ll notice that I can see people on my left. I can see what’s going on. It’s not just a reflex, I don’t have to work to turn on my left eye. When I am in class, I can see everything around me. I can see both my hands right now. I know this sounds really stupid, but I can always see my right side. But the fact that I can see my left hand and my right hand at the same time- that’s never happened to me. Just a couple weeks ago I discovered right here on my nose. I’ve never in my entire life been able to see the left side of my nose with my left eye. I’ve never had periphery right here with my left eye. It’s so many little things that I’ve been able to see but it’s so life changing for me. I remember coming home from Vision Therapy and I told my roommate, “I can read letters with my left eye!” and she looked at me like, “What are you talking about?” and I was like, “I can see things!”

At Vision Therapy I wear a lot of glasses where each lens is a different color (so one lens is red and one lens is blue) and you can only see certain things with each eye. I got double vision for the first time, which meant I was see with my left eye and my right eye at the same time. It was the coolest thing. I had never seen with both eyes at the same time. I had gotten the left eye to work and I had gotten the right eye to work. For me it has been so many little things that I’ve been able to see for the first time they’re so meaningful and to be able to share it with people here who understand my situation. There is a very small group of people who understand all of the challenges that I’ve had because it’s so complex and jumbled. To grow and communicate with people. There has been so much one on one attention too. I’ve been consistently working with the same person so any time that is something that I am able to do or not able to do there have been immediate changes made.

In terms of my therapy, my time with therapy right now has ended. I am leaving the country for a few months, but I am looking at coming back because my therapy so far has just been targeting my left eye and it has been life changing. I’ve gone from 20/640 to now 20/500. In terms of acuity I’ve jumped 140 units of visual acuity, which is really big for me. Even though we haven’t been targeting my right eye necessarily, because we want to get the left eye as strong as possible before introducing the dominant right eye, my right eye has still had residual effects. It has gone from 20/80 to 20/60. So, once I come back, I would love to continue working with my left eye until I plateau, then introducing the right eye.  Also, in terms with eye contact, I’ve been told by people around me that my left eye doesn’t drift as much and that is awesome. It is something that I can’t recognize for myself, but to get the feedback from other people that I have a noticeable deviation from the “norm” in the past is amazing. There is less looking over the shoulder, its been great.

This is definitely different than any traditional vision therapy. If you have had vision therapy before, you know that you have some sort of challenge. I think that this would be one of the best possible solutions to overcome that challenge. In terms of the staff, there is nothing but positivity here. Like I said, there is one on one attention. You can immediately make changes to whatever plan that you are having and you can communicate with who you are working with about any confusion and why you’re doing something or anyway to make it better. I would definitely say that there is no reason not to explore. Something that was a challenge for me was working with the left eye, because it was so challenged in the past, I thought there was no point doing Vision Therapy with my left eye. This has taught me that my left eye can improve, it’s just a matter of time.