Please don't call me crazy: I've lost my eyesight, not my mind.

"I believe my mind has sharpened because of my vision loss, as I’ve learned to use it more expansively in many ways."

When I began this blog in November 2007, I hoped to document and share the challenges of sudden and profound vision loss; however, I found moving on more interesting, and I just never made the time, nor had a reason, to put my experiences into written words -- until recently.

A distressing encounter with an old acquaintance in the supermarket prompted me to write a letter to him, to explain my situation, with hope that he might gain some understanding about my complex lifelong struggle that he clearly either didn't want to believe or couldn't believe, when faced with the stark reality of it in our chance meeting.

This is someone who has known me more than 30 years. He has been a supportive colleague. His wife is a retired teacher; she has known my mother. These are people with whom I've shared a mutual respect...I thought. My recent encounter with Jerry, though, left me wondering what went wrong in the supermarket, or what types of predispositions he had brought with him that day, to elicit his hostile response. As I explain in the letter, Jerry's exhibition of denial, projection and rejection is uncommon among regular folk, though those behaviors quite common among doctors -- but doctors see me as a threat;  Most doctors don't know what to do with me; they would rather not get involved;  and they just want me to go away. And I am all too happy to oblige. I really don't want to have anything to do with anyone who wants to be cruel to me because I'm defective or blind. But I didn't want to write Jerry off that way, and so I wrote to him.

After receiving my letter, Jerry did call me to apologize, though he could not explain his outbursts, when I asked him why he insisted in our encounter that there was "something wrong in (my) head." He justified that implication by telling me he was "surprised" to hear of my vision loss. He said his behaviors were not typical for him, and "something happened between us that shouldn't have." He made the excuse that his abrupt departure had to do with his wife being in the checkout lane and waiting for him to bring his credit cards. He also revealed that he currently faces treatment decisions in connection with a recent diagnosis of lymphoma; so fear or anxiety on his part could have played a role, I think -- though his behaviors, under any circumstances, remain offensive and unacceptable. I'm glad I challenged him on them.

Here is the letter, abridged:

June 17, 2013

Dear Jerry,

I want to apologize to you: Clearly, my explanation, when we chatted at (the supermarket) recently, about my vision loss and heart surgery, disconcerted you -- enough to bring you to conclude that I’m crazy, and then turn your back and walk away! I’m sorry that I offended you; I didn’t mean to. You asked me what I was looking for, when you saw me climbing the shelves, and I told you bluntly why I had to climb the shelf to check the price – not the answer you sought, and apparently not the best approach to explaining! I’m not sure how I could’ve done it better, but I wish I had. It bothers me that I upset you.

It was good to “see” you, and I appreciate your making yourself known to me. Because of the nature of my remaining vision, distinguishing faces is difficult, and I never could have recognized you if you hadn’t spoken....

A nurse asked me (once), “Don’t you ask, ‘Why me?’” My reply was, “No.” And I never have. This is my life, and I cherish it. I praise God every day for His many blessings, and I pray to bear the burdens He sends me with the grace they deserve. So far, thankfully, with His help, I’ve embraced my misfortunes beautifully -- though anxiety (out of control at one time and misdiagnosed, of course, and maltreated for years) does still plague me some. The knowledgeable psychologist who finally correctly diagnosed me told me, “The only thing that’s wrong with you is you worry…and you’ve got a lot to worry about.”

Jerry, your hostile reaction is not unique...though (it) used to be rare outside the medical world. Most doctors still come unglued, truly abusive, when faced with the facts of my lifelong history: Just too much to fathom, I guess. That rejection – indeed, betrayal -- has been the most devastating aspect in my lifelong struggle with heart defects; and now there is the vision loss to complicate the situation even further! Thankfully, my highly capable cardiologist for the last 15 years has not denied me the facts, nor his trust. He has looked with a clear mind and compassionate heart at the mess that previous doctors have made with me and the emotional damage I’ve suffered at their hands, and he has become a loyal and understanding friend, an absolute treasure to me.  

Generally, too...I learned from an early age that my heart history was not good fodder for conversation. For example, after my first heart surgery...in 1972, I wrote my long-time Japanese pen pal about it. Even though I sent her several subsequent letters, as well, I never heard back from her. I still suspect that she just couldn’t believe it.

And in college, when other students would ask me about my scars...and I’d tell them about my surgery and pacemaker – a real oddity at that time -- that would be the end of any possible friendship. I learned it was best to avoid the subject -- which is difficult to do now, because I need to explain the vision loss….

In 2006, my home health care workers -- learning my history, and then seeing my difficult struggle to recover after my second heart surgery (which my cardiologist and I anticipated for 10 years) -- told me I should write a book. “Who would read my story?” I asked. “No one wants to hear it!”...

Jerry, I’m the same person now that you’ve known. I’m not crazy, though those who won’t accept my situation, or who are threatened by it, might say that I am; and I’m sure my vision loss has changed my appearance and actions: I have to scan my surroundings differently now and rely on my other senses more to figure things out and find my way. Until I lost (my sight), I didn’t realize how much information full vision provides. With full vision, I really didn’t have to try to comprehend my surroundings; they were all just laid out before me! With very limited, shrouded, low vision, I have to work very hard now, constantly, to assess and re-assess my ever-changing surroundings: It took me a year to learn how to use my remaining vision, and it is a process of continual fine-tuning. I’ve had to tell people, because they tend to think I’m incapable because I’m blind: “I’ve lost my sight, not my intelligence or experiences.” I believe my mind has sharpened because of my vision loss, as I’ve learned to use it more expansively in many ways. ...

Anyway... I hope I might “see” you again. ...