First signs

I don’t know much about myself as a young child. Those memories have been overshadowed by later years and mental suffering. I rely on stories, stories told to me by my family, to tell me who I was. I am encouraged to find that these borrowed memories often make sense with who I am finding myself to be now.

My little collection of snapshots of my younger self are varied. My own memories usually coincide with going outside to play. I remember the gentle, clear lighting that filled the room as my mother tied on her tennis shoes before taking us out. I remember bowls of delicious soup, steaming with mulch chips and dried grass clumps, which my siblings and I lovingly created and pretended to eat. I remember grass seed bouquets that heralded my betrothal to the boy next door. Climbing trees, flying off of swings, racing across the back yard…so many memories of the outdoors.

My siblings remember other things which I do not. They remember my personality. I was a spunky child, indomitable in spirit. I did what I liked and took the consequences afterwards. The spankings made me mad, but they didn’t stop me from being myself and doing what I wanted the next time. I danced while I did my schoolwork at the little table in our basement. Nothing could keep me still, and no one could dampen my enthusiasm.

And then, things changed. It started with potatoes. One day, my mother discovered that someone had trampled on the little potato plants growing in our compost pile. Apparently, those potatoes were specially marked as plants that were to be allowed to grow.

My older sister saw the change before anyone else even realized that something was different. When interrogated about the potatoes, I responded that I wasn’t sure whether I had done it, but, if I had, I was sorry. I was assumed guilty, duly spanked, and the matter was over.

That was the beginning.

My sister watched with increasing annoyance as my strange confessions grew in frequency. I was never quite sure that I hadn’t done the misdeed in question, but I was always sincerely sorry if I had. What could her little sister be doing? After all, as the oldest, she had always been the good, responsible child, while I, being second in line and blessedly free from any similar sense of responsibility, had been the mischief maker whose chief delight was to annoy her. She concluded that this new-found scrupulosity was my brilliant attempt to one-up her and annoy her even more.

My “scheme” was both unusually effective and long-lasting. As the days turned into weeks, the weeks into months, and the months into years, my sister began to see that something was wrong. The anguish which was to consume over a decade of my life had begun.

The growing darkness in my mind was accompanied by the diminishing clarity of the world around me. My parents first noticed that something was wrong when the family ran to the window one day to watch the deer in the field across the road. I could not seem to locate the deer. Where are they? See, right there. But it was no use.

I remember my parents holding a book up several feet in front of me and asking me to read the title on the cover. It was made of a hard, shiny material, and the sunlight reflected off of it into my eyes.

Test after test followed, doctor’s visit after doctor’s visit. The optometrist could not believe that I actually could not see the letters I claimed were indistinguishable. After all, she could find nothing wrong with my eyes. My fate seems to have decreed that I should spend my life suffering while others claim that I am making up my agonies.

Even the specialist could find no trace of anything that would explain my loss of sight. Mystified, terrified, my parents tried another specialist at the Cleveland Clinic, this time with results. On April 1, 1998, my mom tearfully informed me that the results of the test showed that I had a rare, irreversible, untreatable retinal disease which would gradually claim much of my vision…StarGardt’s.

My young child’s brain refused to take the full import of that information in. I remember happily telling my mom that at least I would never have to learn how to read road maps, because I really had trouble understanding them. I did not cry. I did not even know that I should be really sad. I shut out the feelings, the hurt, the anger, the grief.

Later, those feelings would come. The tears would come. The rage and grief would resurface. But not for over a decade. I was not safe, even inside my own mind, and I could not allow myself to know my own loss.

Do any of you have similar experiences that you would be willing to share? Do you struggle to retain accurate memories of your younger selves? How has tragedy touched your lives, and how have you learned to deal with your loss? These questions are highly personal, so please share only when you feel comfortable doing so. Join in the conversation.


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