Amy - posted on 02/06/2016 ( no moms have responded yet )
I am the younger sister of someone with Epispadia. I am intererested to find out if anyone else is out there who has experienced the affects of it on their family into adulthood. The effect on mine has not been good and I figure we can't be the only ones. I think our situation is a particularly bad one, and by no means an example of how most people with Epispadia'a lives will pan out. Don't want to scare anyone. But I feel very alone since it is so rare, and I think getting some insight might be useful as we continue to try and deal with the repercussions of it.
My brother has Epispadia and he is 39. When he was a child he was operated on and it was fixed for a bit, but he became more and more incontinent in his teens and 20s. The doctors originally did not tell my mum to get him counselling or anything and my parents split up when he was 11. So as a teenager he did not have a man around and pushed my mum away. About 10 years ago he had an emotional breakdown and blamed my mum for everything (not my dad). We discovered he had been feeling deeply ashamed of it for years and unable to cope. He has always been very intelligent and obviously had spent years thinking and thinking about it. He said she should have killed him when he was born because he was genetically weak. As a result of his anger towards her he and my sister argued and didn't speak for 7 years and he did not contact my mum for a long time except for sending her very angry emails about how she had ruined his life. He has now moved to Australia and become a Christian. In many ways it has saved him. We were entirely secular growing up and I can see how his belief in science and the way our world holds up masculine sexuality ultimately led to him feeling worthless. Christianity has saved him from that. However, his views have become increasingly extreme. I think he has always felt anger towards women in general, but now he believes that as my older brother and a man, his opinions are more important than mine. He has said exactly that to me. He is not prepared to live and let live. He says it is his duty to convert us and says offensive things about other religions and gay people and gets angry if you even say you disagree with him. He says it is not to do with the Epispadia anymore, but I think that is the root of everything. He hates pagan monuments because they are phalic symbols which I think is telling. He now says our family was destroyed because my mum and dad weren't christians and didn't stay together. If I try to discuss his beliefs or what I think are his at least partly unfair beliefs about my mum he often says that the reason I cant just accept what he's saying is that I am a woman and women cant let things go and get more emotional about things. When he was younger he was extremely left wing, but also ultimately a reasonable person. He has become such a different person. I find it difficult to communicate with him and am also worried by how extreme he is becoming. It's been a real insight into how people become religious fundamentalists. He has talked about becoming a missionary which I'm sure would make him happy but it worries me what situations he would be in and ultimately it worries me that he will now basically do anything for Jesus. I am not religious but I am not anti-religion. It is only the extremity of it that worries me.
It seems unlikely, but is there anyone who has had similar experiences? Even if you're the mum of someone rather than the sibling. Or if there are any support groups or online communities that might be useful. My brother went to Baltimore to see Dr. Gerhart after he had his breakdown to see about getting surgery. He utimately decided against and uses pads. But as he gets older that is less of a problem. It is now the emotional issues it resulted in that are, I think, still not resolved. My email address is email@example.com