Version 2.0 on the “out of sight” installments. Last one was just onee year ago on January of 2021. Perhaps I am getting closer to a title for my book. Haha

Out of min…

Some people think that loosing one’s mind involves not being able to find the car keys. For me it was the carrot smoothie in the fridge…. I spent nearly 10 minutes trying to locate the drink. I had taken it to the library, right? No, then I went to the living room. Oh, yeah in between all that i had used the restroom. Okay, where are you little carrot smoothie? I found it in the fridge.

Or maybe I had not lost my mind altogether. I was simply distracted. Until the book I was listening to brought up another entire area of loss that most people never think of. Gestures and facial expressions. Here’s my story and I am sticking to this one.

Out of memory…

A long time ago when I was just a teenager, I remember an incident that shook me up quite a bit. We were at one of those famouse birthday luncheons at the church where I grew up. This particualr evening, my dad was into his famous story telling moods. And whenver there was an audience to be had, he seemed to think that he was the center of everyone’s attention. So, when I ran about to fill up the coffee cups as my waitress heart deemed necessary, the next few moments were very much a tell tale of the RP digression of his eyesight.

The coffee was delivered, and the speaker was not attentive the the surroundings. I waited, and waited and waited to get his attention and let him know that the drink had been refilled. Suddenly, the story teller gave an unexpected hand gesture that upset the apple cart. But that was not even the pretty part. The surprise of the spilled beverage, the demeaning words and the angry expressions by my father in that particular setting (church) made for a memory tattooed on my hearts emotional being. Yes, the negative response is a memory somewhat repressed, but nevertheless not forgotten.

Out of words…

Years later, a friend of ours said that one’s emotional explosions and expressed words after an upset hot beverage are really what the person is really truly made of. When the coffee spills, how do we respond? Surprise and shock do not necessarily mean bad words. Sometimes, choosing words of blessing and apologetic behavior matter much. I always felt that my spilled milk was always followed by yelling and angry words. No reason to cry over spilt milk? Well, being blind and having the spills happen so frequently either makes one wise up and sue sippy cups, or find some other solution to the frequent spillages.

Out of mouths…

Dealing with an eyesight loss can mean a whole new change of character. My uncle lost an eye as a result of an unfortunate farming accident. I remember visiting with him about the changes in his life. One particular change was finding moved objects in his path with toes and shin bones rather than his eyes. Now he found himself frequently cussing and fuming. It was both exasperating to himself and to those around him. Apologizing for his surpised outbursts was becoming far to regular. Ahh, how eyesight loss changes the way we must move and the way we react to surpises. There is no more laughter at the jack-in-the-box events that happen. One soon learns to live in a constant state of tension while moving for the possibility of those awful little “weasels!”

Out of hands…

My gesture loss happened during my children’s high school years. I was done teaching club at church due to my hands constantly hitting an unsuspecting child. Pointing across the room only to poke a child in the eye was so distressing. The gesture loss was hard for me. I use to talk with my hands all the time. Who does not want to point a certain thing out while talking? This abilbity to throw my arms about during speech actually began to decrease the amount of speaking that I would do. It is really hard to stop acting out like a stage professional during a good story. But waving my hands about was not an option with the peripheral vision loss. How do I visit with others in group settings without being able to point or gesture in some common way?

The next obvious loss for me was the facial expressions and hand gestures of others in group settings. It is also hard to tell, who might want to jump into the topic next with a speech that they deem very important to give. While I may be able to view the person across the way, the others around the table disappear from my view. This might allow for greater focus, but moving my eyes around to catch the others reactions to a speaker is exhausting. This large group silence at times is really unbearable for me. Expecially when I still remember so much.

Except where my smoothie is…

It was during this loss of “circle movement” by the others in a group setting that I noticed some other things happening. More often then not, I was getting “shushed” by those around me. I had missed some conversation cue of eye, or gesture that indicated who was next in speaking. My thoughts that were so ready to blurt were getting stoppped up by those around me. This too was hard. I began to feel like certain people were treating me as if I were a misbehaving child. Becoming blind day by day, year by year does not mean that I am reverting in my behavior. Simply put, I was now out of the circle…

So now, I find myself listening more and more during group settings. When I am so desperate for interaction with people, I find that interaction being stolen by my loss of vision. The surpise of a cake plate upset on my lap or on the floor feels like a common occurrence while at family gatherings. Coupled by the deafness in my left ear, the abiltiy to even hear the oncoming delicasy, is hampered by the lack of sight. Plate on the floor. “Oh, no!” Learning to live life in a perpetual motion of “i’m sorry!” Is not very fun. Embarrassment and humility do not always gather closely. Sometimes the embarrassment is overwhelmingly sad. The feelings of loss and the inability to even help with the cleanup are so frustrating. Playing statue is not that easy!

I really don’t like surpises any more. Boo! Is not fun like the peekaboo of babies and little children. The last few times that we had Christmas present openings, I lived in a state of perpetual “what if the coffee spills?” And not knowing what was in the presents or trying to figure the item out in the semi-dark was exasperating. Having the person next to me tell me what each item was supposed to be and trying to find the right facial expression after my completely confused confoundedness was not enjoyable. I began to really dislike opening my gifts. Watching the others was somewhat more enjoyable. But oh, how I needed a little parrot on my shoulder telling me all the happenings about me. It makes one feel very alone in a crowd.

And that’s the last experience that I want to share on my way towards becoming invisible me. The last time that I went to a church event without a close family member was very painful for me. Extended family that has not grown up with a “blind father” does not really understand the needs that arise as the Retinitis Pigmentosa progresses. While I could walk a straight line down the sidewalk, I could no longer navigate a crowd of people carrying plates at a potluck. Attending the church without my husband had turned out to be a “fatal” choice for me and I had become invisible. No one in my current church was familiar with the challenges of RP and I was left sitting in a corner throughout much of the meal event. I finally left the crowd and sat in the sanctuary alone. Truly alone. My ability to “flow” through the plate bearers left me feeling very disabled. I cried without end over the potential of “spilled milk.” I called my husband, and he was able to come and pick me up. The rest of the day was spent in tears. The people that I had gone with did not understand my needs, were busy and had not ever checked on me. I felt unable to express myself and ask for help in a situation that left me feeling so invisible.

Recently I read “The Hobbit” by J.R.R. Tolkien and found it very full of forward motion. The adventures of the hobbit keep one listening just to see what happens next. In the book the discovery of a magic ring gives the little fellow the ability to become invisible and disappear from danger and tribulations. Honestly, being invisible and feeling invisble are two totally different phenomenon. Choosing to shrink from view within a public event and loosing the ability to see who all is there in the public setting are two opposing feelings. Being blind in a community setting makes everyone present invisible to the blind person. Not a very fun feeling when you walk into a group of people and all of the talking stops. This has happened to me so many times that I cannot count. I can begin to imagine however what it is like to walk into a room that feels full of people but seems empty until someone addresses my presence. My father’s ability to get the group to burst out in laughter helps to break the ice about his blindness and lets him know just how many people are really in the room. I don’t see myself ever being “on display” as that-blind-lady. I don’t see myself breading the ice with bad jokes just to count the voices of laughter within the space. i don’t see myself as others see me. I cannot.

My position in a group setting is usually at the piano with the whole commune behind me. Sometimes I wish I could turn the piano around so that the people were in front of me instead of behind me. Maybe that’s the next change in my life. For now I’ll let them see my hands while I play piano since I cannot. (P.S. My therapist said that I am not supposed to use “can’t” in my speaking or writing anymore. I asked her if she still could drive a car… I said, “I cannot.”)