Gary Sanders

In the summer of 1977 my family and Imoved from Kankakee, Illinois to Kansas City, Missouri. I had enrolled in the theological seminary and we moved early in the summer so we could get a jump on jobs and adjusting to a new situation.

Almost from the beginning I began to have sores appear on my finger tips and knuckles. It would take up to 6 or 8 weeks for them to heal. In October of 1977 I came down with what the doctor thought was pleurisy and I had it until Christmas. My lungs became very scarred from this incident. The sores, or ulcers as I was later to learn was the proper term for them, kept appearing on both hands and on my elbows as well.

The doctor thought this might be a sweat gland infection and treated it with cortisone. Needless to say the ulcers returned. For four years we treated this thing one way or another. Then just 30 days before graduation from seminary I awoke one morning and found my right index finger to be cool and a light shade of blue. After about 4 days and it wasn't any better I went to the doctor. He gave me a medication said it was a slight circulation problem and to take the medicine for 30 days and come back.

It didn't work! On Thursday before I was to graduate on Monday I was in the emergency room of Baptist Medical Center in Kansas City. The doctor I saw there told me I had "dry gangrene" brought on by a shut down of the circulation to my finger. Ten days later the finger was amputated. I was told on theSaturday after my admission to the medical center I had the classic Systemic Sclerosis or Scleroderma.

I had never heard of it before! I was bewildered and scared. Graduate school, if it does nothing else, teaches you how to find out about things. While in the medical center I went to their library and researched about this disease. I probably shouldn't have done that. You see, I read some people get the disease and live a long life; others get it and die in 6 months. I thought with my luck I got the short stick and I'm out of here (life) in a few months!

This affected how I related to my wife and my two young children. I was sure I was going to die in a short while and I began to pull away from them. I had three constant companions inside my head at all times Fear, Anger, and Depression. One of them was always present. On Christmasday 1981 my youngest child was born. He was 3 weeks early and I welcomed him to this world but wondered if I'd live to see him grow up. Four weeks later I was in the same hospital having my ring finger on my right hand amputated. Seven months later I was again hospitalized and half of my left thumb was amputated.

I was taking penicillimine to help soften the scar tissue but it had no effect except to inflame my intestines.

Things leveled out medically speaking; a year later I had a bout with bad circulation in my right foot. One toe was blue and cold but a surgical procedure took care of that. Life became a routine; however, I was working at a job I didn't like. I was not in the ministry like I wanted to be. My denomination seemed to turn its back on me and conveniently forget I was there. I even tried to get into a hospital chaplain's program but that didn't work out either.

Things didn't look good in my life. Psychologically I was taking a good beating. My self-esteem which never had been high was going lower and lower. I couldn't provide enough for my family, my job had no future, no chance for promotion. I felt hemmed in and left out by the church I loved and worked for.

I was working for my denomination's publishing house and they made it very clear to me they did not want me staying there, in fact for four years they did not give me a raise. I applied to work at their world headquarters. I thought with my education, a Bachelor of Arts in Biblical Literature, a Master of Divinity degree with a concentration in Theology and an additional 20 hours on a Master's of Arts degree program in Biblical Literature, I might be able to help in one of their many magazines they published or another area. I was ignored.

In this denomination after receiving all the required education for ministry one had to serve 2 to 4 years fulltime in a ministerial assignment to be ordained; I wasn't given the opportunity to serve. Seemed as if I didn't fit into any nitch so I wasn't dealt with as I might have been. Finally in 1983, I think, after causing some commotion and making waves I was allowed to serve as a volunteer chaplain for the Civil Air Patrol, an auxillary of the Air Force.

Even though I was responsible for the spiritual well being of over 50 people in my squadron and their families, making a total of over 300 people, NONE of my service would be counted toward ordination. I set aside that goal of ordination for a while and concentrated on my duties. It was a great 5 year experience but as the saying goes, "...all good things come to an end!" The scleroderma seemed to subside nothing major happened as far as the disease is concerned. However my wife's life went into a tailspin. In September of 1985 she attempted suicide and for the next 10 years she was in and out of mental hospitals, trying all kinds of therapy,medications, therapists..... to little or no avail.

I gave up my aspirations of any type of ministry. I did not renew my ministerial license. I concentrated on keeping my family unit together. There were many years I worked 2 jobs and 60 to 80 hours a week just to pay bills. I was mother and father to my three children and at times to my wife as well. I missed much of their childhood from working and trips to hospitals.

When I did have a few minutes to think about things I wondered at what the stress was doing to aid my disease. The Anger,Fear and Depression again became constant companions. My wife'scondition never got above the level of low grade functioning. She preferred sleep to family life. Her disease took its toll on all of us. I was lonely, lonlier than I had been in my life. I had to get out of the marriage or go under emotionally myself.

I had met someone who cared about me so June 1,1995 I left my wife, filed for divorce and moved here to San Antonio, Texas. Debbie and I were married this past August 16th. I didn't pull any punches with her about my SD. I remember one evening I said to her:

"Debbie, we have to talk about the SD."
"ok"
"I have the disease, I have to live with it, I have no choice. But you..... you have the choice. You can walk away right now and I will totally understand. If we are to get serious and get married then this thing is going to affect you too. I don't want you to be saddled with a burden that by a simple choice you don't have to have."

Well, she had already researched this disease very deeply. She looked into it as soon as we had first discussed very early on in our relationship. She refused to walk away from me knowing full well all the ramifications of her decision. WHAT A LADY!

Tht's my life to date...so to speak. The physical limitations of SD are not as hard to accept as the psychological barriers. I honestly believe if I had received some kind of counselling as soon as I was diagnosed overcoming those three companions of fear anger and depression would have been much easier. But then watching yourself disentigrate before your very own eyes is not easy either.

I remember telling a friend it was like the Grim Reaper was standing there laughing at you and saying, "I've got you! Ha Ha and you get to watch every slow-moving second of your death! You get to feel the cold touch of death on little parts of your body. Now DIE but slowly, Oh so slowly! ha ha ha!" I felt like I've had to swallow a lot of dreams and goals and to rearrange others but that could simply be my own shortcomings.

Somehave said I must be very brave to face the future but not hardly. I still find some solace in the spiritual things I learned. In the book of Isaiah it is written "But those who wait upon the Lord shall mount up with wings of eagles, they shall run and not gow weary, they shall walk and not faint." I just put one foot in front of the last one and pray for the strength to put the next foot in front.

I also found a most excellent description of how I felt early on in my disease in the Biblical book of Lamentations chapter 3 the first 32 verses. I think it is appropiate for all people who are devastated by such a disease.

Gary Sanders

Updated November 24, 1996

A few days after my story was posted on the "I Have Scleroderma" website I was talking to my daughter, Karli, on the phone. She was telling me about her final year in college and how excited she was to be graduatingin the spring of next year. She has access to the WEB through thecollege computer system. I told her my story had been posted at the website and she told me she would try to read it soon. A few days later I received an E-Mail from her saying I read your story and thought I send you a copy of my letter to Kate Nance.

".... Gary Sanders is my Father. I would like to thank you forprinting my father's story, I've learned more about him and Scleroderma. I was only 7 years old when my father went into the hospital for thefirst time in 1980, all I can remember is that someone had said my father was going to die. I waited and waited, scared that every passing day would take my father further and further away from me, and in a way it happened. As he became more afraid of losing us, he became less the man I knew as father.

His laughter came less and less, even his smiles became rare; his anger seemed like an animal gnawing away inside him ready to spring on anyone of us at anytime. As time went on I came to believe my father was always this way and the other man was just a dream. One thing led toanother and last year my father divorced my mother and went to live inTexas. Now as I talk to him on the phone and see him on holidays, I see the man I thought was a dream, I see my Daddy. Thank you so very much for printing his story, maybe others will read it and understand. I am glad there is now support and networking for people with Scleroderma that there wasn't 15 years ago. Thank you again, Karli Sanders"

A whole new world of communication has opened up between my daughter and I. We talk more often on the phone now. We e-mail each other quite often. She plans to come down for spring break again and to come and be with us this next summer. We are able to openly express our feelings about things in the past and alot of forgivness has occured. We are closer than we ever have been. Regrets? Yes I have many and I made a lot of mistakes hearing my daughter say "I love you,Daddy!" makes up for a lot and helps to face another day of battle with Scleroderma.

You can reach me at: CXUJ92E@prodigy.com
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