The National Federation of the Blind
of Connecticut
Mary Ann's Story
By Joseph L. Tolve Jr.

Only months ago, due to a life-shifting accident, I suddenly became a hollow shell washed up on a baron island. It was light years from where I had lived previously. I had been born blind, but at eleven my life took a drastic change. It was a really hot day, and my parents decided to take me for a swim. Dad left me sitting in a chair only eight or ten feet from the pool's edge, while he and Mom went down to the ocean for a dip. The ocean waves were too big for my liking-- I got panicky every time I tried going in for a dip with them. My always-accommodating parents soon found me a beach that also had a swimming pool. After getting warm in the hot day's sunshine, I picked up my white cane and walked to where I thought the pool lay. When my cane went off of the edge, I stopped and stepped four or five feet to the right. Dad had told me that at that point I would be in deeper water, and man was I in deep water!

I put my cane down and did an almost perfect dive. My body was as straight as a pin, feet together and legs high in the air. Yet this dive would prove to be the most imperfect dive of my life. My hands and arms crumpled with the realization of what I had done. "This is not the pool!"

Weeks later I learned that I had turned too drastically towards the right and ended up diving off a ten-foot wall onto some rocks. My skull was fractured, neck shattered, and voice box and spinal cord totally severed. I would have drowned in only inches of water if not for a young boy fishing on the rocks who saw nearly everything. Immediately he called for help. I was unable to move a single muscle and laid helplessly below the shallow water on barnacle and seaweed covered rocks. Those minutes seemed to be an eternity and my held breath was about to run out when I lost consciousness. EMS workers had to do CPR to revive my almost lifeless body.

I briefly gained consciousness in the emergency room and heard my mother crying, "My poor baby isn't able to talk or move now too?" Compounding matters even further, only a week after my second bone fusing neck surgery, my parents died in a car accident. Having no one to help me, I was put on state assistance and sent to a nursing home where I still remain some twenty-one years later.

For seventeen intolerable years I had only one wish--and that was to die. Night and day I prayed to God that He would deliver me from this dreadful hell that I had been forced to abide in. During those seventeen years I had incorrectly thought that my future only held wretched loneliness and disappointment. Then my life was transformed by a TV show.

My social worker in the nursing home came into my room and put on a cable news station while she ate her lunch with me. The news was replaced by a story about a blind man. My ears perked up as I learned that this man was demonstrating talking computer systems. He said that he had written three books and that he accessed the net and e-mail via a voice synthesizer inside his laptop computer daily. My social worker called the Connecticut Cable 12 News station and an hour later my life was given back to me.

Joe, the blind man on the news, came to the nursing home where I had been imprisoned in a nearly frozen body for almost two thirds of my life. He put his laptop on the hospital table across my bed and said, "While coming up here to see you, I prayed that I could find a way of helping you. An idea finally occurred to me and I'm anxious to see if it will work for you. Your social worker Mrs. Tola, told me that you are mute, and only able to move your head and jaw."

While he was saying this, I listened to a robotic voice spelling out the alphabet as he typed it into his computer. He said, "I'm sure that you heard the letters being spoken as I typed them, didn't you?" He intuitively put his hand on my chin so he could feel me nod or shake my head. With my heart leaping for joy at the idea of being able to communicate with people again, I vigorously nodded my head up and down.

"Lillian," he called to his wife, "do you have a pencil?"

"Yes," she said while fumbling in her bag, "give me just a sec to find it."

He broke it and put the end into my mouth. "I've broken it in half so you have better control." He gently moved my head to the right and down slightly, telling me, "This is the right arrow key on my computer." Joe put the eraser of the shortened pencil that I was holding in my teeth onto a key and told me to press my head down. I heard the letter A being read to me by a voice produced by the sound card in his small laptop. "Now if I had only brought a small external speaker I have at home, that synthetic voice would sound even better," he told me apologetically. "Please think of a two or three word phrase that you would like to say. Hit that key until you hear the first letter of the first word you want to use," he instructed while helping me to keep the eraser on the right arrow key. "The letters A through J are on the first line, second line has K through T and the third and last line has U through Z on it," he told me. "So If the first letter of your message begins with," he paused for a second thinking of a letter, "let's say L, hit the key directly to the left of where you are now and that will take you down one line and arrow once to the right.­" I had overheard employees of the nursing home talk about their work and home computers long enough to understand the layout of a keyboard and to comprehend what Joe was attempting to tell me. I was so excited that I couldn't hold back my eagerness. Before he could finish, I hit that right arrow key nine more times and we heard that mechanical voice read the letter, "I." Five minutes later we heard the strange voice read my first (spoken) words in more than seventeen years, "I love you." No one was going to stop me now. Without waiting I started on another sentence. Hitting the up arrow key again we heard the synthesizer say "K." The first letter of my next word was T, so I knew that I had to arrow to the far right. Excitedly I began bobbing my head up and down as the letters were being read to us. I stopped on the last letter on that line and paused anxiously for Lillian to jot down the letter T for me.

"For the future, remember," Joe said while I moved to my next desired letter, "you could have stayed on that line your last letter U was on, and only hit the left arrow once to get to the letter T. It would have been a more direct way of doing the same thing. I don't mean to diminish your achievement, only trying to make it easier for you," he told me gently. With a genuine laugh of approval he said, "I can see that I've got a real smarty-pants here." His wife and my social worker joined in the enthusiasm. "I didn't have time today to search the net, but I'm sure that there are special programs made for paralyzed users. I'll have that info for you real soon. I promise," he said as I finished my next three words.

Hitting the up then down arrow like he told me, we heard, "I love you. Thank you, Joe." Joy was pouring through me like a great hurricane, and my dripping tears testified to my heartfelt gratitude. Never had I been more excited. It felt almost like I had actually been given the gift of speech again!

Joe is a volunteer computer teacher for disabled people, and found the information that would change my life forever within only minutes via the net. He left me his laptop that day so I could communicate with the staff of the nursing home. Two days later he returned with a special program which he immediately installed. Then he surprised me with a Forehead Mouse. This Mouse attaches to my forehead, and its tail goes into my mouth. I only need to move my head up or down, from side to side a fraction of an inch and the synthesizer reads the letters aloud as I pass over them. Hearing the desired letter, I only have to bite on this mouse's tail. The chosen letter is then moved to the bottom of the page where I can easily make words and sentences out of them.

Joe was with me six days a week for months. Before long I was connected to a modem and online after he had taught me how to use Internet Explorer and Outlook Express. Soon after that I was surfing the net with my forehead mouse and with a click of my teeth, I was able to read the millions of things available to me online!

At seven A.M. a morning aid gets me cleaned and out of bed. Because I am unable to hold myself upright, she straps me into a wheelchair and rolls me to my own desktop computer that the staff of the nursing home bought for me. I have gotten involved with e-mail and have friends all over the world! I realize now how lucky I am. There are two people I write to nearly daily who are in worse condition than me. Except for being blind for 11 years, which really isn't all that much of a handicap, I knew what "normal" was like. I write to a young girl who was born totally paralyzed and who operates a computer and runs a web site with her breath alone! Another boy, who was born paralyzed, has to operate his computer with the only thing he can move -- his eyes!

I have even found an online school where I enrolled this year. I was in the sixth grade when I had my accident. I am now thrilled with hope for the future. It takes me days sometimes to write a single page of information, but oh how liberating that time is for me now! I've sent friends five and six page letters that took me three days or more to compose. Four years ago today I was praying that my life would end and now my only complaint is that there isn't enough time in the day to do all I desire.

My midnight nursing aid slowly wheels my wheelchair away from my computer. Another few inches and my forehead mouse will be pulled from my head and mouth. I've only got time to say goodbye, and my favorite two words, "Love you."

 

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Updated April 23, 2009