the flavor of hope…
Late last night I participated in a conversation via social media involving the many different methods for treating strabismus, and specifically the gaping hole between treatment from MD’s and OD’s. In many ways, it’s a great development: society has evolved enough that more and more people are realizing the value in exploring options in treatment. Still, it’s disappointing to me that such a gap still exists when full unity would make things so much better for everyone, including patients. Especially patients.
All this to say that this morning I received this email from someone who did not participate in the conversation, but clearly read through it. Her opinion is raw and telling, and clearly, worth consideration. She requested anonymity, which is fully understandable.
I wanted to thank you personally for working to help those in the Vision Therapy Parents Unite Facebook group understand the value of Vision Therapy. I joined the group more as a voyeur never planning to participate, although no one has ever discouraged me from commenting. Part of my reasoning is because I am angry and refrain from disposing of this anger upon others, and the rest of it because I would never want to influence someone else’s ideas of what good treatment can be, or not. I’ve found that the less people know about the bad experiences of others, the more likely they are to do their own research, and discover the truth for themselves.
I am in my 50’s and in my adult life have had four strabismus surgeries. I was diagnosed with constant esotropia as a child and grew up living with an eye turn. My parents never had much money, and in that day and age, insurance was only had by the rich. My school years were filled with what today may be considered bullying, but in that era, was just kids being kids. Unlike my peers, my goal in going to college was not to earn loads of money or even to earn a degree, instead my college offered full-time students medical benefits, one of them being vision.
My first strabismus surgery occurred about 25 years ago and was a colossal failure. My a**hole of a doctor treated me like a moron before, during, and after my surgery and the take home message was that he was smarter than me. Even as I type those words it angers me all these years later. This was my f***ing life and somehow my opinion stopped mattering. My fourth and final surgery was about 10 years ago and subsequently, I was told they could no longer help me and fired me as a patient. The impetus for writing to you and sharing my story is not to crucify anyone, and based on your input to the group, it seems you’ve heard many stories like mine as it is. Instead, my hope is that you will share this with all those considering surgery simply because their holier-than-thou MD suggests it. I only hope you will respect my need for privacy.
Recently I’ve begun to consider the unintended outcomes of my failed surgical procedures. My self-confidence is poor, I am socially uncomfortable, I chose a profession which requires little to no interaction with people (computer engineer), and my self-deprecating persona has made long-term and meaningful romantic relationships impossible. The common misconception of those surrounding me is that I am a loner by choice. This is distressing because it’s simply not true. My outward personality is dictated by the amount and quality of input I receive through my senses; a correlation, I’m assuming, most people simply take for granted. On a good day I may be outwardly pleasant , and on a bad day, I still contemplate turning the light on to wake up. The greatest manifestation of my anger is when I want to yell and scream at those suggesting that surgery is the only option for their strabismic children. They need to be told in loud and grotesque fashion that the game is rigged, and surgery is not a winning ticket. My life is evidence of that fact. What struck me in your contributions both in your blog and on Facebook is the clear path you take away from bad mouthing other professions, a restraint I have not yet mastered. You are to be applauded for this.
To my point, I have recently enrolled in Vision Therapy. My doctor was very clear that my chances for straight eyes were less than 20% considering my extensive history, but he is willing to try, which offered a flavor of hope I’ve never tasted. Since I’ve never been married and free time tends to be abundant, we’ve agreed on three visits per week plus a compliment of at home exercises. I simply cannot get enough of my VT, knowing that my destiny is completely within my grasp. Hope is running through my veins these days, believe me.
Finalizing, it is my wish that someday everyone will realize the value of Vision Therapy and understand it’s treatment. The great effort that you and many others make is not going unnoticed, and for it, you should all be commended. I do feel that visibility is important and the more the word is spread, the more people will realize the truth. Through my reading I’ve come to understand that in childhood the combination of surgery and Vision Therapy can lead to positive outcomes when co-managed properly. Perhaps through some act of God, MD’s will someday be willing to work together with people in your profession, with an understanding that the patient’s life is more important than whose research is more plausible or whose treatment superior. A combined effort geared towards quality of life and overall patient happiness is in my prayers. What a great day that will be.