"Your 2 1/2 year old daughter is legally blind."I can only imagine the thoughts going through my parent's minds. Could she really be? How did we miss this? What now?
Up to that point in my life, my life was a series of routines: I got dressed the same way everyday, sat in the same chair at the dining room table, took a bath in the same order, I would easily snuggle into my mom for story time and "read" with her...everything was predictable until the furniture was moved.
Shortly after my diagnosis, I was taken to the hospital between the ages 2 1/2 and 3 for a surgical procedure in which one of my eye muscles would be shortened. The goal was to "restore" my vision from seeing blurbs and blurs to seeing actual shapes and outlines.
Even at that young age I remember being in the hospital...board stuck to my arm; watching "sleepy" cartoons (which I now presume they had me watch as they put me under). I remember the blue Care Bear blanket my grandmother brought me. It was blue with a blue satin ribbon at the top. On that blanket, I remember the brown Tenderheart Carebear with the red heart on his chest. I remember receiving the baby doll that cries when you flip it over onto its back...which I still have. I remember red curtains and the hospital bed with rails. I remember feeling confused as I laid in the hospital bed and looked up to see my grandma and mother looking down over me.
Although I do not recall the moment I saw actual images for the first time, the surgery was a success. I could see.
My parents worked hard at catching me up in terms of learning the world around me. For example, from birth my parents talked about the trees, leaves and flowers...the colors, textures and shapes. So theoretically I knew what these things were. I just never experienced it for myself until after the surgery. In essence, I had to re-learn about the world around me and engage with it in new ways.
Although I always loved school, it proved to be difficult for me. I had to spend extra time focusing on a task because my eyes do not coordinate. Even now, I suppress the vision of my right eye and my left eye does most of the seeing. You could imagine how difficult it would be to learn how to cut paper following a line or trace a line without the use of one eye. This also effected my comprehension and my ability to learn how to read. I spent lots of extra time in the chapter reading lab or being pulled to the back of the classroom to work on "special" exercises separate from my classmates. Although it might sounds awful and difficult and strenuous, it was all I knew. My little eyes and brain learned how to adapt to the world around me. I knew nothing else but seeing with monocular vision.
In second grade I was almost held back but my parents stood by me and encouraged me to progress with my classmates to the third grade. I did fine! In fourth grade as we learned more complex math I had a wonderful teacher-aid who realized that I simply was just not getting "it." She taught me "touch math." It made ALL the difference in the world. To this day I use this strategy when counting, paying a bill or adding a tip to a receipt. There is no other way I can do math.
Moving forward, I have been able to succeed at most things in life, despite taking a unique approach or even taking a little longer than someone with binocular vision. I graduated high school and college on-time and with honors. I completed my graduate degree in a year and a half while working multiple jobs and earning high honors. Everything just take more effort, but I do it.
Despite these successes, life for me is not without challenges. Often people don't think I am looking at them (only using one eye at a time, my suppressed eye can and does often wander out making it unclear if I am indeed looking directly at someone). Driving is painstaking. I avoid it at all costs. It requires so much focus, attention and strain on my "seeing" eye. My peripheral vision is compromised. I can only see about one or two cars in front of me so things seemingly come out of nowhere and easily scare me. This is why I take the same driving path (even if it takes longer) and why I stay in the same lane on the freeway (even if it is going 20 mph slower than the posted speed limit). Driving to new places terrifies me because I am unsure where I am physically in relation to a new space. Either I worry, study the map, go the day before (or make excuses why I can't go) so I know for sure how to navigate to the new place...or better yet I have my husband drive me past it or if possible just have him drive me. Parking garages? Forget it!! Unless there are three or four open spots all next to each other I don't even try. I know for sure that if there are 3-4 open spot together I can get my car parked in one of those spaces without damage to myself, my vehicle or those around me. On a similar note, I will park four blocks away from where I need to go just to have a "safe" parking spot to place my car. Walking up and down the stairs I tap my heels or toes to ensure I don't miss a stair. I use shadows and shade to determine where it is safe to walk or drive. The recent solar eclipse threw off my spatial awareness so much. One of my reference points, the shadows cast by the sun, was gone. Most recently, my husband asked me to clip our son's toenail while he held his foot. I realized I could not do this without touching the toe its self... a physical point of reference. My sense of touch has helped me overcome my monocular vision. After thinking about it, subconsciously in many ways I use strategies that many blind people use. I use my sense of touch as a way of "seeing" and navigating though my physical world. Up to this point, I never realized this. Once I did, I started noticing how much I rely on physical touch to help me in everyday tasks that most people with binocular vision can't even imagine.
It amazes me how the human body adapts and how the brain makes accommodates to operate in the world when one of the senses isn't fully functioning.
In the mid-2000's I decided to try out vision therapy (VT). I was a 23-year old graduate with a master's degree and I was fed-up with the occasional double vision and migraine headaches. I heard that VT could help, especially given my history. I remember walking into my first session. I was emotional, terrified and felt stupid for not being able to perform simple tasks that most other can do... like catch a ball. My therapy seemed haphazard and disorganized. Maybe I didn't fully understand the purpose or maybe I just didn't connect with my therapist but either way it was a stressful experience. I had maybe 5-6 sessions. I was asked to hold a pencil to my nose while I held out a string with beads on it. The goal was to get both of my eyes "turned-on" and working towards the same goal of only seeing one bead. I had to wear a black pirate like patch over one of my eyes, making me feel more stupid than I already did. One exercise required me to put black blinders on the lenses of my eye glasses. There were other exercises like pointing to objects on a moving field or looking into a teal colored lamp. One of the last session, I was taken to a dark room with an old-school overhead projector. The therapist displayed nursery rhyme characters (again, making me feel like a child), yet the purpose of this activity was to get both eye working at the same time, fixated on the same object, to see three-dimensional...something I have never seen before. After several frustrating attempts, my eyes and brain connected. I saw Nate King Cole's belly jump right out towards me. It was the first and last time I have knowingly seen 3D. It was the strangest, most disorienting feeling. Over the course of my treatment, my life was disrupted. The headaches remained. My stomach was upset from the shift if visual perception. I found myself running into doorways in my house (which I had never done before) or stumbling out of bed because I "missed" the floor. Everything I knew, all of the visual information I used, was changing. My body struggled to adapt to this new way of seeing. Although I did see progress and saw 3D for the first time, my therapy did not continue after those initial sessions. I felt like a failure. I felt defeated and the "stupid" feeling remained. This time with an altered perception of the world. I felt like I was worse off.
Over time I forgot about my VT experience and continued to live life as I always had---going on to get married, travel Europe, earn a lecturer position at a university and in the past three years start a family (three kids ages 3 and under).
My most recent pregnancy was difficult which led to the premature birth of our third child. Six-months postpartum I realized that my prescription glasses no longer offered the clear view of the world as they once did. I blamed my recent pregnancy and went to the eye doctor for an exam. Everything was routine. I was given a new prescription which was available in a few weeks from the exam date. Having picked up my new lenses, the world around me still was not clear especially out of my right lens. I went back for a re-exam. We decided to switch to another prescription which, a few weeks later, led to adding prisms back into my lenses (something I had about a decade ago). This still did not fix my seeing problem. I went back for a fourth time. After tweaking my prescription again using the phoropter machine I was given this news from my eye doctor:
I'm sorry Brandi. This is as good as it gets.It was still slightly blurry and unfocused out of my right eye. As of current, this is my "new" prescription, as frustrating as it may be.
In previous seasons of life I would have written this off as tiredness (I mean, come on, having 3-kids so close together, who wouldn't be tired). But this news felt different. It reminded me of the words Dr. Ford spoke to my parents more than three decades ago as he told them that their daughter was legally blind.
I could not accept this new "diagnosis."
So, I prayed. I researched. I internalized all of my past feels and emotions. I became brave. I found a vision therapy office that happened to be near my home. I made a late-night decision (what good comes from late night decisions...from an exhausted mind that is not clearly thinking) and I signed myself up for a free consultation with the local optometic physician. It was two-weeks out. I dreaded this appointment more than an appointment for a root canal. It brought on so much stress and anxiety. The day after making the appointment, I sheepishly told my husband...like I had done something bad or was confessing some horrible offense against him. Not fully understanding the bravery it took for me to even THINK about VT again, he shrugged his shoulder and said, "good. Go for it. Let me know how I can support you." Really?! That was it? Wow! Some tension was release but I was still anxious for the pending appointment.
The day of the appointment finally arrived. I pretended all day that it was not happening until about 45-minute prior. My husband looked up the address for me, coached me on how to get there and assured me everything would be fine. He stayed home with all three kids.
I found the building, first entering through the wrong doors (STRESS). I quickly found the correct set of doors, located the elevator and made my way to the second floor...10 minutes early.
The office was locked! Oh boy.
The staff was out to lunch and promptly arrived as stated on the "We will return at" sign. 2pm.
Deep breath. Here we go.
Once the doors opened, I walked up to the front counter, handed over my paperwork as I held back tears and my anxiety. The wonderful receptionist offered me a bottle of water, which I gladly accepted. It was a great distraction and it "gave me something to do" as I waited. Shortly after I was checked in the doctor came out...with a big smile, friendly face and eager to hear me story.....
to be continued...
No comments:
Post a Comment