July 19, 2014 / San Francisco, California, USA
Hi, my name is Jim Lake. I live in the Chicago area. I used to be known as a hypospadias cripple but they changed the terminology. Now, I’m just a man who has hypospadias. What I have to say to doctors is that you really need to come forth with informed choice to let people know what could go wrong. Yes, my hypospadias was very severe but No Body Is Shameful®. My parents were told by the doctors when I was a baby never to discuss it under any terms. I think I grew up pretty normally, but around puberty I really had a lot of questions and they weren't answered. I left home at the age of 19 to find myself because I needed answers.
I met with a doctor. He examined me and told me it was a very simple repair. He explained that I had hypospadias. I had never heard that word before. I wrote a 30-page letter to my parents and it was very emotional. I felt totally betrayed and I loved my parents. I didn't understand why all this was such a lie when it was something that obviously people knew about. My parents replied and they also sent my medical records, and yes, I'd had seven surgeries as a child.
My doctor really wasn't concerned about my medical records. He just wanted to start from this day forward. So, he did surgery. The next morning it was infected. Five more surgeries followed every six months. Each one just as infected. He told me that there's nothing else he can do and that there were no other doctors he could refer me to. I have now had 24 operations. The last few have been successful but they never tell you how long they're going to last. At least my current surgeon is very up front about it. He says, 'If it lasts for five years you're doing great.' So every five years I look forward to something else happening. Usually because of urethra strictures or scar tissue.
It's been about two and a half years since my last surgery. I'm feeling good right now. Everything's coming along. The main thing I want to say to doctors is really get to know the patient and where they're at and what they're actual questions are. Please talk to your patients. Things are changing but slowly. I wish they'd take their time to make sure it actually is a medical emergency so that the person having the surgery can have a say in what happens to their body instead of all of the sudden feeling like a freak.
My story doesn't have a sad ending. I've always had a very positive attitude even through all that or all this as it you know it will never be over. My real goal is I want you men to know and I want you kids to know and I want you Moms to know that there's a person here. Even though you're afraid of what's going to happen to them. Are they going to have a sex life? Are they going to have a good sex life? Are they going to get married?' Are they going to have children?' You know, I'm here, I'm normal, I was born the way that I was born.
I'm currently serving as president for the Hypospadias & Epispadias Association (HEA). I’m disheartened sometimes when I see posts from parents who just discovered they have a kid with hypospadias, and they've already scheduled the kid to have the surgery. A few weeks later I'll look back and read "I wish I wouldn't have had the surgery because now there is a fistula or there's an infection." I'm not saying that I want to take away parents' rights by any means. I'm saying that you really need to be informed about what's going on. You need to meet other parents, meet some caregivers, talk to a social worker that's involved with one of our groups.
There are so many groups out there that want to give support. There are so many men out there who get together and share their lives, and let that raw emotion come out and then they're not isolated any more. Take your time and get to know and love your child for the child that they are. Then see if the child really wants when the child is able to communicate at age-appropriate levels. Then see what really is necessary. I understand that there are some things that are medically necessary and those need to be taken care of. But, you have to understand when you cut it causes scar tissue. It causes nerve problems. Those are things that can never be taken back.
Please understand that. Come to a conference. Meet people. Celebrate life. We are here for you. Thank you. ©