I was born three months prematurely, weighing only two pounds and two ounces. Today I would have been a pretty big preemie, but in 1972 most surviving preemies were bigger than I was. To my knowledge I was not a sick baby. The only complication that I had related to my prematurity was a condition which was then called retrolental fibroplasia (RLF). This was discovered in both of my eyes along with glaucoma in the left eye when I was five months old. My mother's notes in my baby book report that no hope was offered for the left eye, but some was offered for the right eye. After the diagnosis, my parents took me home with no information about how to raise a blind child.
Overall, I think that my parents have done a good job,especially considering the circumstances with which they had to work. They discovered what I could see along the way. I have heard many people with low vision complain of feeling that they had to pretend to see things. I don't recall having these feelings. I don't recall being resistant to learning braille or that my residual vision was a reason for my resistance to learning other skills. I do recall that this vision was useful to me for some things and that I was encouraged to use all channels of input.
Over the years, I have lost most of that residual vision despite two surgeries. I seem to be confronted every so often withmore complications of RLF, now called ROP. Treatments designed to preserve my remaining vision have so far been successful--possibly even more successful than the doctors expected them to be. During this latest period of dramatic loss of vision, I have had the opportunity to learn much about the conditions affecting me and to make some observations about lifestyle issues which influence those conditions. I feel very enlightened, but I have to admit that sometimes this enlightenment is a hindrance to me, as I am tempted to think that I must instruct God when I ask for healing.
Now that I have brought up asking God for healing, I should talk a bit about my belief in God. My parents are both Christians, and I grew up attending the Church of God (Anderson, IN).
I do not remember much about my experiences at church before the age of 12. I have a few sketchy memories of singing choruses, memorizing a weekly Bible verse, and Sunday school booklets. Of course, I only knew what was in them if someone read aloud from them. I know that they had spaces for writing or circling reactions to the lesson. To my knowledge, I never wrote in one.
When I was in the sixth grade, I began to develop a passion for music. I joined the junior high school choir and began to idolize singers. Dad refused to take me to see Juice Newton in concert, but he said that he wouldn't mind taking me to seeAmy Grant. At the age of 11 in 1983, I was first introduced to Amy Grant and Sandi Patti. I didn't like Sandi Patti as well--she sounded too much like an opera singer. But I loved Amy Grant and began listening to the Christian radio station just so that I could hear her sing. Gradually, I did warm up to Sandi Patti and many others as well.
I insisted that my parents record my choir concerts on a portable stereo cassette recorder. Every day after school, I set up the little stereo on top of the piano in our living room and picked out the melody, harmonies, and accompaniment to the songs from the choir concerts. When I had become fairly proficient at playing the accompaniment, I recorded my performance on a blank tape. I never intended for anyone to hear my recordings. They were my secret accomplishment. No one criticized my playing, and I had something that I had made to remind myself that I could play the piano.
Why I was so afraid of criticism I will never know. My mother found one of my tapes one day and made me sit and play the song in front of her. She must have told her friends from church about my piano playing--I remember one of them telling me that I wouldn't be listening to Sandi Patti's songs if she had hidden her talent.
By that time I was 12 years old and had decided that I wanted to live my life in a way which would be pleasing to God. I vaguely understood that this had something to do with a man named Jesus who had led a pure life, who was crucified on a cross but who somehow came back to life and eventually was taken up into the heavens to be with God. Just two months after I had made my decision, my parents took me to see Sandi Patti in concert. At the end of the concert, she sang a song about Jesus coming back to earth and how we will see him as he is, not as just a man but as a glorious being from Heaven who is the One who saves people from sin. I suddenly understood fully that Jesus filled the gap between me and a God whom I could not please by my own efforts. I remember distinctly that I wept for about two hours.
From that moment on, the connection between music, emotion, understanding, and faith was sealed for me. Music has played a vital role in my expressions to God. Once I had mastered the techniques necessary to play the songs from those choir concerts,I began to have occasional "jam sessions" with church musicians. There was no holding me back after my accomplishment was exposed. I wanted to sing and even to play the piano, and I wanted to do it all the time.
One of the musicians from the church asked me shortly before my 13th birthday if I had ever written a song. I didn't think it was possible. He squelched my vocalizations of self-doubt with immediate instruction in major chord progressions. A few months later, I realized that the unfamiliar tunes and orchestrations I kept hearing in my mind were my own songs waiting for lyrics.
This was the beginning of my journey of faith. I have related it here in this first entry because it permeates my experience of blindness. Every painful experience generates cries of anguish to a God who I believe, despite my moments of doubt, cares about my well-being. Every victory over sorrow, fear, and depression brings forth shouts of praise; every moment of peace and rest whispers of thanksgiving.