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Thanks for visiting my diary. I've been journaling since 1984 and have chosen to share some of my entries online. They are not all positive thoughts, but I hope that reading them might be a blessing to someone who needs encouragement.
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I don't know all the issues around this, but I suspect that I was dissociating as an infant. Besides the NICU trauma, I also had a lot of eye exams. I wouldn't have thought anything of them, but my last retina specialist was also an expert in the field and treated babies from all over the world with this condition. I can still remember hearing the babies scream just having the drops put in their eyes. The first time I heard it, it was absolutely heart-wrenching. My dad was sitting beside me in the waiting area, and he said, "I remember that cry." My parents weren't back in the exam rooms with me back then. Today parents are always there unless the baby is under anesthesia, and for more in-depth exams like I would have had they usually are. Now I understand why some aspects of the eye exam make me nearly pass out, and they're not really painful. They're just so intrusive, and I think they trigger the part of me that remembers. I can remember being restrained for exams when I was as old as eight, and even though the nurses were always gentle it's awful to have no control over what people are doing to you. After my cataract surgery (that year), I was hospitalized for a week because I couldn't deal with the post-op exam. Mom's journal on the fourth day after surgery reads:
Dr. Holland had told me they would give Sarah something to put her out so he could examine her. They told me later it was enough to knock out a 200-lb. Man, but this little girl didn't go down easily. She was determined that today she would open her eye all alone.
I dreaded the exam. Surely it would be worse than before. He would be irritated that she was awake. She would fail again and the tears would start.
He got out his bright lights (which were painful to her) and the swabs he used to pull the lids apart. Oh, how I dreaded it.
Sarah piped up and asked if she could try it. She was groggy and sounded like it. He agreed. Then she asked if we could open the curtains -- no lights. He agreed. She sat on the side of the bed with old "Kitty Soft" in her lap. After a few minutes, the eye began to open. Dr. Holland helped only a little to remove some of the mucous. She looked down and said "I see my kitty!"
Everything I ever needed was given to me then! Her light perception was saved! Sometimes I hate myself for being so calm -- how great it would have felt to whoop and holler.
After Dr. Holland examined her, he put the perforated shield back on and said she would probably zonk for most of the day. But when he left, Sarah wanted to go to the window. I helped her over -- she was very wobbly. The light was a thrill to her. When I suggested she rest, she decided she wanted to go for a walk. So we shuffled into the hallway with Sarah leaning on me. She just wouldn't give in to the medication. As we walked down the hall, she looked at the ceiling lights through the shield and would tell me when we passed under one.
We circled the floor once -- she was excited; I was getting misty. As we came to her room, she said "It all makes sense now, Mom." I told her I didn't understand what she was talking about. She said, "I was so scared, but now it all makes sense to me."
How I fought off that medication I will never know--I can't do it now!!! But this just shows how much I wanted some control over what was going on. As an adult, I finally managed to learn, at least somewhat, how to control my own eye movements. It's hard to have a good eye exam when your doctor says, "Look down," and your way of looking down is to move your head because you can't control your own eyes. Learning to do this was probably the one thing that made eye exams go better for me, but I wouldn't know how to teach a child. I'm not entirely sure how I taught myself.
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