“I don’t have much time. What do you need to see me about?” the Dr. snapped as he looked at his watch upon entering the exam room. I sat there, a 19-year-old with cornfield written all over my face. I was scared, but I came here for advice and I was not going to leave without it. “I think I have something wrong with my penis”, I replied, “It does not look the way that I think it should. It’s crooked. ” The pants dropped and the examination began while the conversation continued. The Doctor apologized for pretending to be short with me. He said that most patients with a ‘Hypospadias’ don’t know how to explain it and waste a lot of time trying to explain the situation. He went on to explain that I had anywhere between 5 and 10 previous surgeries, depending on stages and would place his bet on 7. This highly recommended Urologist from Oak Brook, Illinois went on to say that he was not qualified to operate on me but referred me to a Chicago surgeon who performed several corrections a week and learned from the pioneers of the present surgical techniques.
I am now 45 and still find it amazing what you can recall from a very early age. At that time I had never heard of hypospadias. I did remember being in the hospital several times as a child, but thought nothing of it. The room was filled with other boys my age with tubes running in and out of each of us. I thought it was just another ritual of being a kid. Then the memories flooded back. Remembering talks with my father that he was disappointed that I could not do the things my brothers did. I remembered him frequently inspecting my penis as a child and making comments, “Keep it clean,” or, “You’re gonna have a hard time finding a girlfriend. ” But I was a resilient child and just ignored him as being a parent. All of my friends had parents and most of them said stupid things as well.
During my childhood, I also had a deep desire to learn about religion and spirituality. Though I was an Air-Force Brat, and moved yearly, I would meet people and attend various churches to see what they taught. Though I really never agreed with a particular church, I liked the people. I think this is why I have such a feeling of spirituality with me, even today.
When I began to feel different was in high school. I knew from gym class that I was not like the other guys. I had an out though, as I also had an inner ear disorder that would make me dizzy for days on end and grade 5 acne nodules all over my body. To this my father told me that my hormones were always a little out of whack. I managed to be dismissed from gym due to health reasons. I also learned to go to the restroom during class, not during breaks. I was a good student, but instead of sports, I elected for Speech, Drama, Chorus, and Band. Yes, I knew I was gay but I did not know exactly what that meant, and thought it was a phase. I kind of thought it was because of my crooked dick. I remember speaking of it in jest with some of my friends as, ‘the problem’.
For some reason during my senior year of high school, I had to go for a psychiatric evaluation. During that meeting at an Army Post, I told the Doctor that I thought I had ‘the problem’ and I wanted it looked at. I also told him that I thought I was gay. Being an Army Doctor during the 70’s, I knew he would not like to hear that. The Doctor conferred with my parents. I never heard another word about it except my father once again had words of wisdom, “No son of mine needs a shrink or a doctor. ” That statement conflicted with the fact that I had periodic visits to the Dermatologist and the to various other doctors regarding my ‘Menear’s Syndrome’, dizzy spells.
I went on to college on a music scholarship where I met and got engaged to a girl. Though I really liked her, I could not bring myself to be sexually intimate with her. A friend of mine had moved to Chicago and asked if I wanted to come up and visit. I did and I saw it as my chance for escape, so I took it. I said goodbye to my family and friends and decided that I would try to fix myself. We set up housekeeping with another friend, a nurse, who helped me find the support to continue my journey. She made sure that I saw a counselor before I made the appointment with the surgeon.
It was now, January of 1980. I took the referral and the renowned surgeon informed me that my surgery would be a snap. I would be out of the hospital in a week and I had nothing to worry about. I had a job and took a week of vacation time and scheduled the repair. I even told a joke before I went under.
An elephant was making his way through the jungle when he came upon a naked man. After a moment, the elephant asked the man, “How do you breathe through that thing?” And then I remember waking up. It was the next morning. I was sore but curious. I looked at my dressings and there was some sort of green ooze making its way to the surface. The nurse walked in and asked how I was doing. I covered up, but she looked at the dressing anyway. Then she left the room. She returned with my surgeon and another physician who literally ripped the dressings from my stomach, sides, and legs. This was to be the first of a series of failures. Instead of being in the hospital for a week, I was in bed for 30 days before dismissal. Then recovery at home for another month before returning to work. I was glad that I had already had a support system in place.
Then six months later, the same experience transpired. Six months later… This skipping record continued for a total of three years, resulting in six, failed repair attempts. In July 1983, my surgeon informed me that he would not operate on me again. He blamed the failures on my acne. My dermatologist did not agree. I was 23 and devastated. Though I was not able to resume my education, I was fortunate enough to retain my employ. I had 2 jobs, one for money and the other for benefits. I managed to keep a good support system, but with no future in sight, I looked at alternate therapies.
My main income was from bartending. My boss told me that he knew a faith healer that cured him of cancer and said that I should give it a try. I had nothing to lose. It was interesting and I learned some relaxation techniques. After 3 visits I was told that because I was gay, God would not heal me. By now, I had used up almost all of my options. The last came from a friend of mine who had moved to California. He had been cured of his homosexuality and was to be married. Another friend of mine had already changed his lifestyle and was currently married. Once again, I had nothing to lose and I had to see what it was all about.
Upon my arrival, I discovered that my married friend had bandages on his right arm. No one would tell me why. Time went on and I had sold everything I owned and started looking for a job. I stopped and had lunch with this friend and he cried to me that they poured hot coffee on him until he went through with the wedding. That afternoon I got the rest of the group together and arranged for police and a U-Haul. We moved from the group home and were safe. But I had used up all of my options. I called my sister and asked if she could get me home from California to South Carolina. I had a choice of transportation, but chose a bus, as I wanted time to think. P.S. Never take a bus across the country.
But I did have time to meditate and to see so much beautiful country. At one stop a young mother and her two children sat in the seat in front of me. The mother asked if it was ok for her son to sit beside me. I agreed, but during the movement, he hurt his head on the seat. At the next stop I purchased some first aid supplies. The mother explained that she could not afford to pay me back. I did not care. I just wanted the young man to feel safe. Later that evening I fell asleep. The next morning I witnessed the most incredible sunrise as we approached the Grand Canyon. A sensation of peace overwhelmed my being and I just started to pray.
“Doctors can not heal me. Religions do not want me. I am a good person. I know that you, God, love me and I need your help. I don’t have anywhere else to turn. ” I cried. I cried for what seemed like hours. A few days later found me at the bus station in Columbia, South Carolina where my sister was waiting for me. In her hand was a magazine article about a miracle drug for acne called Accutane. I made an appointment with a local Dermatologist; three months later I was cured. My skin was clear. Then I noticed that another miracle had occurred. The dizzy spells that I would need to see another Doctor for had stopped. The last one I remember having was before that morning near the Grand Canyon.
This was a healing time in my life. I was able to reconnect with my family and to get to know my parents as people. It was never my father’s intention to say cruel remarks and he apologized profusely. My parent’s discussed at length and on several occasions some of the obstacles of my birth to this point in life. They did make it known that doctors and psychiatrist told them at the time of my earlier surgeries, never to discuss it with me. It would only confuse the issue. My support system continued to grow. Later that year, my eldest sister came around with yet another magazine article about Hypospadias and the doctors in Norfolk, Virginia who pioneered the surgical techniques used at that time.
Dr. ‘s Horton and Devine in Virginia told me they would be able to help me within three procedures. Again, I was fortunate because I was able to transfer from my previous position in Chicago to a lesser position in South Carolina. It allowed me to have insurance again. This time I found more of my healing. In the spring of 1984 I started the next round of corrections. As promised, with two additional lesser surgeries, I was able to urinate standing up by the summer of 1985. Before that time, the opening was at the base of the scrotum and the underside of the penis was open to the tip of the glans or head of the penis.
Since that last surgery, I made my way back to Chicago where I have a good life for the most part. I have wonderful friends and extended family and we make sure each other are doing well. Starting in 1988, I began to have problems urinating as the urethra would have a tendency to close off. My current surgeon tells me that it is due to excess scar tissue. Every three years I have a dilatation and a cathetorization. This summer, 2004, I will be scheduled to have another one.
But three years ago, I had the timing to tune in the television as, ‘Is it a Boy or a Girl’ was being broadcast on the Discovery Channel. After that show I went to the internet and found that the second annual meeting of the Hypospadias Association of America was set to meet in Denver a few weeks later. I can not tell you how cathartic it is to meet others with similar conditions and stories of struggle and survival. This year, we will be enjoying our fourth meeting in Toronto, Canada as the Hypospadias and Epispadias Association. It is so good to know that times are changing and support is available to give and receive. Most importantly, we don’t have to lie about who we are. We are men with birth differences. I was always taught that it’s good to be different, now let’s live it!