Suffering, Intervention, and Acceptance: My Journey With Vision Loss

Pt. 1

“Buckle up” would have been an appropriate suggestion by the ophthalmologists at Mass Eye and Ear after delivering the diagnosis of Optic Nerve Hypoplasia (underdeveloped optic nerve) to my parents and me at the age of 9 .

Testing revealed optic nerve deterioration, but the type of deterioration fit criteria for two similar eye conditions — both incurable. There was also no identifiable underlying condition that was causing my optic nerve to lag in development and performance. My family and I were sent on our way after a day full of testing by the hospitable department staff, and recommended to an optic nerve specialist in Waterbury, CT. Unfortunately, all the specialist could provide is bi-annual vision checkups with periodic testing to follow the maturation of my optic nerve.

There were already many unpleasant memories prior to my visit to Mass Eye and Ear. I vividly remember the incessant hammering of the MRI machine, the seven different vials of blood drawn on two separate occasions, the car rides to and from the appointments, preliminary testing by an ophthalmologist that seemed right out of a sci-fi novel, and my parents leaving the pediatrician’s office in tears after hearing the initial findings and dire possibilities of disease. We didn’t realize how my life would be permanently affected by what was happening at that point and from what was to come — espcially the psychological shitstorm that neither I nor my family was prepared for.

My vision didn’t affect my athletic performance early on, as I was a talented basketball, volleyball, and soccer player throughout my youth and early teens. When I was ten I attended tryouts for my town’s little league program. Although I didn’t make much contact in the batting cage, I could field well and had a strong arm for the infield. I started at the “hot corner” (third base) as a ten-year-old making my share of errors, but also turning heads when I would backhand a shot off the bat of a twelve-year-old and throw him out at first. Admittedly, I was scared to death in the batter’s box. Not only was I worried that I’d strike out but terrified I wouldn’t be able to avoid an errant pitch headed straight for my head — the baseball didn’t become recognizable to me until it was already halfway to the plate. While I wasn’t discouraged by baseball because I was so productive in the field, I wasn’t confident enough in my vision to keep playing the following season.

My parents were my greatest fans, and I formed my identity based upon their self-esteem-boosting-comments. Every bit of praise for my abilities and successes was another piece of building material for my ego. My pre- and early teens were a time of athletic success. As I absorbed my parent’s praise, I also witnessed my athletic ability increase — especially at volleyball — and the belief in my ability was reinforced. All the while, my vision didn’t seem to interfere very much in school, or on the court.

My parents were advised by the optic nerve specialist to contact CT’s Board of Education and Services for the Blind to provide me any necessary accommodations in school. They discovered the department would assign a case worker to work closely with me and coordinate periodic meetings with my teachers for updates on my progress and any difficulties I was experiencing. The meetings always seemed to be brief, lasting no longer than 15 minutes, as I was performing well with no more than three accommodations — large print books and tests, and a seat at the front of the classroom. My case worker continued to follow me as I moved on to high school where I transitioned seamlessly with the same three accommodations. (A good example was my high school entrance exam, taken on oversized paper with large text. I remember casually answering questions about it posed by a few kids sitting around me; I was not ashamed of my accommodations.)

I performed well both academically and athletically the first year and a half of high school, even with a noticeable decline in my visual acuity, which had dropped to 20/80–20/100 by the time I entered 10th grade. But by my junior year I couldn’t see anything written on my chemistry class whiteboard the entire year, despite the teacher writing in black marker…and that, as we’ll soon see, was the least of my worries.

As high school progressed I was no longer as accepting of my vision and accommodations, and became more resentful and bitter towards ‘someone’, or ‘something’ that had bestowed poor vision upon me. Being different became much more important to me, especially as a teenager. High school brought uncertainty, competition, and new challenges; it became an equalizer of sorts, that put me into a place I hadn’t been before — in the middle of the pack academically, as well as athletically (except at volleyball). The ingredients for a disastrous recipe were beginning to mix when my declining vision was more prominent, and my ego was under attack by the realization I wasn’t at the top.

I began to really suffer psychologically by the second half of my sophomore year. Early junior year I was experiencing anxiety attacks at regular intervals–every day. The very first one snuck up and devoured me whole, like an invisible monster ravaging its prey.

After that the attacks were almost solely spurred by the anticipation of another attack even without a thought of my other stresses and challenges. Reading the board was the least of my challenges in chemistry class as I constatntly braced for another wave of panic. The large size of the class, and the closeness of the desks, just made things worse.

By this point I had begun seeing a psychiatrist regularly. He prescribed an anti-depressant and a weekly talk-therapy session with a psychologist. The psychologist just didn’t seem to get it–rarely addressing my vision loss, and really doing nothing more than being a well-paid listener. During therapy I assumed the guy with the PhD had all the answers. But he never clarified what his actual role was during the psychotherapeutic process, nor what the intent, expectation, and goal of therapy was — a fruitless and potentially dangerous approach.

Thoughts of being different or, worse, inadequate plagued me during those middle years of high school, especially when my peers began to drive. I knew I would probably not be able to drive after my second driving attempt with my mom when I ran over a tree branch in the middle of the road without ever seeing it. A cascade of fear, uncertainty, anxiety, sadness, and anger overcame me when I thought about my driving-less future, made all the worse with the realization that my classmates would all be so independent, driving themselves.

When a person perceives they are unlike others, is when delusional comparisons rear their ugly head. Comparisons are a form of rating something else better or worse depending on certain criteria — usually without having all the facts and from a temporarily irrational mind. Unfortunately, comparisons created through the eyes of a vulnerable, visually impaired soul only acts to fulfill a confirmation bias that is often grossly inaccurate

There were times where I felt I had lost control over my environment, but also believed with the right approach I could regain control. That feeling often brought on panic attacks. Months after my first such attack I began to obsessively seek control over everything — both the controllable and the uncontrollable. I often thought I could slow my vision loss, or even reverse it, if I seized control of certain aspects of my life — a disappointing strategy for sure. My obsessive desire for control was my naïve way to reduce or even eliminate the uncomfortable physical sensations associated with anxiety. But my efforts to limit the intensity of the attacks were failing, and I desperately continued to try to improve my approach by identifying and altering more factors that correlated with increased attacks. For example, checking my school bag several more times to ensure my books were still inside and in a particular order; further altering my diet to include more food that I deamed beneficial for limiting my anxiety, while avoiding other food that I felt was problematic; repeating small physical movements/ticks more; arranging my clothes in my drawer in a different way that would possibly increase my “luck”; meticulously tying my tie in the same manner to the exact same length daily; changing the combinations of shirts, khakis, and ties I had been wearing; watching tv shows in a new order; and finally, paying even closer attention to the location of items I needed, or may need in the future — superstitious, controlling, and obsessive behavior that had a counterproductive affect leading to more worry.

My late teens and twenties were filled with bitterness, resentment, and anger. I would rather fight reality than accept my impairment. I believed wholeheartedly that if I fought reality hard enough, it would submit to my constant onslaught, and grant me improved vision, calmness, and independence.

After a decade of suffering, medication adjustments, and ineffective talk-therapy, I found myself in a crisis that required immediate and dramatic intervention. Once treated and stabilized, I was introduced to a therapy that was based upon mindfulness, acceptance, crisis survival, and emotional regulation. Up to this point nobody had recommended an alternative therapy besides cognition-challenging. (A cognitive-challenging approach was difficult for me to absorb partly because this therapeutic approach called for asking yourself WHAT IS THE PROBABILITY vs. POSSIBILITY? In hopes of diminishing unjustified fears of improbable things actually happening. The probability of being born with an optic nerve dysfunction is extremely low, especially without a family history of eye disease, but I was, so ANYTHING is possible [including uncommon disease.]) No matter how delusional my fearful thoughts were, I couldn’t step back and challenge them with anything realistic or believable. It was hard to focus on the present because of so many strong emotional reactions to my plight. (I believe there is a ‘nature’ component involved in my psychological hardship, but have identified plenty of ‘nurturing’ causes, including unopposed cognitive-reinforcement.)

I embarked on this new-therapy-journey with an open mind. The head clinician clearly described the objective of the program, as well as provided required reading material to further educate the group on the program’s objective, structure, and expectations. The first session immediately met my criteria of what therapy should be like (structure), and how a clinician should practice (compassionately, knowledgeably, and aggressively). I felt fully supported and equipped throughout the learning process of accepting my visual condition, emotions, and the difficulties they present.

I now accept the fact when I encounter tasks I can no longer perform as well as I had in the past due to my visual decline. I’ll also state to myself “PLAY YOUR CARDS, SUPERMAN” if I’m starting to harshly self-judge my inabilities, or simply notice any self-judgment and bring my mind back to the present.

While the Serenity Prayer was not associated with the therapy, I would silently recite the prayer to supplement treatment-specific-skills to help tap into my wisdom and differentiate what I could realistically change, as opposed to what I could not — my vision.

I also understand how important adaptability is as my vision declines — more accommodations are necessary to improve my quality of life. From time to time I choose to forgo an accommodation in hopes of saving time or for vanity purposes, but inevitably I apologize for thinking I don’t require it when I do. Far too many times I’ll try to read print on an ingredient label, magazine, or book instead of pulling out my electronic handheld magnifier. Or, struggle to see aisle and product signs in a store after choosing to leave my Sightscope lenses home — pride cometh before the fall, or at least a struggle to see and regret!

I can still play volleyball, but in a much-reduced capacity. I’m heavily reliant on my teammates to tell me the location of the opposing server, to step in front of me to pass slower serves, and I’m forced to hit from the middle-blocking position because the ball is typically set quicker and lower allowing me to better see the ball. With my reduced ability to play certain sports, I’ve fallen in love with weightlifting because weights don’t discriminate against almost any impairment. Lifting has nothing to do with my vision, because you don’t use your eyes to lift weight.

Pt. 2

There have been several studies looking at the prevalence of psychological disruption among those with vision loss. It’s no surprise that a large percentage of people living with a visual impairment develop depression and anxiety. These challenges can begin at the first sign of vision loss. There is real need for psychological support for those with a visual impairment, including one-on-one therapy, group therapy, or support groups.

“Heartbroken” is hardly adequate to describe how a parent must feel when they notice their child struggling to see, made much worse if their child experiences untreatable vision. In my case, like many others, there was no detectable cause of my vision loss. Brain tumors are all too common culprits in pediatric vision loss, meaning a lot of frightening testing and evaluation; proper psychological support is crucial during this time to monitor emotional health of both the parent(s) and child(ren).

When vision loss is recognized and diagnosed at an early age, the child needs to be educated on their feelings, emotions, and how to manage them. It’s in this time that a youngster can quickly develop notions that the thoughts, feelings and emotions they are experiencing are scary, wrong, unjustified, or underappreciated.

Impaired vision is a frightening sensory experience. The world may look blurry, appear to be seen through a tunnel, available only through peripheral vision or even what seems like a kaleidoscope. It’s hard to know how things are going to progress; some move at unpredictable rates that can be terrifying, but some, if caught early, are treatable.

If your vision loss is permanent you must learn to navigate many obstacles and this can be very challenging, as I explained above. You will undoubtedly be dependent on others — for rides, assistance around the home with chores, or even work. Tasks may take longer to complete than the average person, or you’ll need more time to prepare them, but I’ve learned you either accept reality, or fight it… I’ve chosen to accept it.

I cannot begin to express my gratitude for the support and assistance I’ve been given by family and friends throughout my life. Without that dramatic intervention, my life would have ended years ago. The psychological fallout from my vision loss was a raging fire for years that my mind was constantly pouring accelerant on. Thankfully, measures were taken to reduce the suffering I had experienced for a decade, and mercifully, after 28 years, I finally began to accept reality and the cards I have been dealt. If you have vision loss, you can do the same.

After graduating from therapy, I discovered the saying: “You either run your day, or your day will run you.” I realized I, as well as everyone else, has a choice to make when difficult and uncomfortable situations, or circumstances are present: allow emotions to dictate a reaction (often ineffective), or simply notice any thoughts, emotions, or urges and choose to act effectively. I’ve entitled my Facebook, Instagram, and WordPress accounts Run Your Day to share both fitness related information, as well as good-intentioned wisdom on how to navigate certain parts of life.