Experiences with Retinal Degeneration
My Story By Joseph

My name is Joe, I'm an African American man.

I live in the USA, in the city of Chicago. I was born on the south side of the city, but did not grow up there. When I was born, my mother was separated from her husband and had two other sons, my older brothers, in whom one departed this world at the age of 24. My mother was impoverished and did what she could to support us. She then gave birth to two other children and then six more! We, the first five of the eleven, were taken from the home because my mother was sentenced by the court and had to give custody of us to the state of Illinois. This all happened in the year 1961. We five were then, eventually separated, two were sent to one foster home and three were sent to another, and later, I alone was sent away to Rhode Island because I developed emotional problems as a result of those events.

Rhode Island was a great place to live and I spent several years there in a mufti-racial environment. I was returned to Chicago in 1967, after careful observation and emotional, and psychological, evaluation. Chicago in the late 60's was a culture shock to me! The low cut hair styles I could remember became big Afro Puffs and processed or pressed hair was the fashion of the blacks of that era. I, of course, was out os sync with the ways of the "hood", as they became known, and I also was a Beetles and British Rock & Roll group fan, being on the east coast for some time. Black Chicago was into Aretha Franklin, The Temptations, Supremes, and James Brown, among others.

As the years went by and the Department Of Children And Family Services saw fit to return the five of us to our maternal mother, the getting aquatinted with new family members, and re-acquaintance to the other four, was an interesting experience. We eventually bonded into some semblance of a real family, but our troubles had only begun. I. at the age of 19, while incarcerated for a felony crime, discovered that my vision sphere was shrinking. I discovered this in a dubious way, a lucky punch got through to my face by someone big and slow, while I was in a fight at the jail. Yes, the life I got myself caught up in after being returned to my mother, was rapidly degenerating into all manner of vices and criminal activity. At first I accepted my crooked life as fate for being black and impoverished, but as I was given time to think, I began to also realize there may be more to life than how I was living it.

My sphere of vision began to decrease as time went on, but I was not actually diagnosed as having RP until I was released from the correctional facility in 1977. The diagnosis was made by Dr. Gerald Fishman. I was sent for an eye examination by my employer, who at the time was Sears & Roebuck. Dr. Fischman used many tests and other visual instruments and testing procedures before making the final diagnosis that I had RP. I was a patient of his for several years, and his understudies would sometimes call me in for study and examination. Dr. Fischman seemed to be very astute in the knowledge of RP and was one of the first that I can recall in his field to explain to me about what I see and what people usually think when trying to deal with RP. I was delighted to know that someone knew something about what I was going through and even seemed to care!

In September of 1979, I became a born again Christian. I was fed up with my sinning ways and I was tired of causing my mother and siblings, so much grief and worry. After making that decision, I was soon married to Bettina, a friend of my sister, who I met while being visited in jail! Funny how fate works sometimes. She has labored with me these past 23 years, though we've been married for approaching, 21 of those years. We have produced five children, 22, 20, 18, 15 & 11, two grand children, and so far, none have been detected to have RP. I now wear glasses to protect and enhance my straight vision. I've been publicly employed for the last 23 years, own a home, my wife drives our van, and my daughter drives another of our cars.

I included the latter to encourage someone who may have RP and is thinking that it's all over for them. It's not over unless you let it be! With God's inspiration and the compassion of caring people, you can go as far as life permits! But..... This is my story, I wait to hear yours!


If you would like to have your story listed, please email me at rpmail@jwen.com

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Page Created 5/11/2000