Young Leadership Committee member, Andrew Conrad: My Life with EB

Throughout 2014, debra of America Young Leadership Committee member, Andrew Conrad, dedicated monthly posts to sharing his EB story. He wrote about what it was like when he was younger, his college days, the challenges he’s overcome, and how he continues to spread awareness for the disorder.

NOVEMBER 2014
Happy Holidays!
In keeping with the personal story theme of posts that started with last month’s addition from Karen, I am following up with another. Shortly after I posted the story of Karen last month, I received an email from Brian who shared a heartfelt narrative about his experiences with EB. His story is one that I am sure many people with EB can relate to. Brian tells how he grew up avoiding conversations about EB with people, the limitations EB presents, and starting a family. As Brian mentions in his story, this is the first time that he has put the pen to paper about EB and I am so grateful that he did!

The Story of Brian Amos
Hello to everyone. My name is Brian Amos. I am 37 and have EB. It has always been hard for me to say that!

When I saw kids that had the disease much worse than I did, I always thought, “I don’t have it that bad.” When I would play with my “normal” friends I always knew I was different than them. I have never once had a conversation with anyone that has EB so I have never once been able to compare stories with anyone that has EB. I have, in a way, always run from or avoided anything that has to do with EB. I wasn’t embarrassed to have EB or embarrassed of the way I looked, but I was frustrated with the limitations. Many of the things that your mother and you have said in a previous blog post caused many memories to rush back to me. Occasionally my two sisters, two brothers, mom or dad would bring up something and I would quickly brush them off so that we didn’t have to discuss my condition. I have always tried to put my limitations aside and do whatever it was that I wanted to do. Afterwards, I would deal with the consequences and pain so that I could continue to live in the moment. That was just my reality -- play now but pay for it later.

The hardest thing about having EB is not the pain or the discomfort; it was the constant questions. I could always understand or expect the first question-- it was the follow-up questions that drove me nuts, or the awkward “yeah that happens to me too” or the trying to be funny comment. I dreaded meeting new people or walking into a room, because I knew the questions were coming. If I could just get past that first question, I knew my sense of humor or personality could win them over. No matter what I did to try to avoid it, that first question of “What happened to you?” was always going to be there. Even as a youngster, I could understand why people wanted to ask the questions; however, I simply grew tired of answering it. I tried to stop the questions by wearing long-sleeved shirts that would cover most of the outward appearances of the disease, but there would always been that one person who would notice my hands and ask. My heart would sink. Those are my memories.

This gives you an idea of my childhood pain; however, it pales in comparison to the decision I had struggled to make over the last six years--the decision to have kids. I never thought I would have kids, because I knew I had a 50/50 chance of passing on the disease. I selfishly said, “No, I don’t want to pass this on.” When my wife and I got married, we never really thought or talked about it. We were living life and having fun. Then one day we talked and realized there was nothing we wanted more than a child. Despite how difficult it was to grow up with EB, I was reminded by my family of how great of a person I turned out to be. I decided if my child happened to be born with the disease, knowing what I know, it wouldn’t be that bad. When our first son, Oliver, was born, it was the most amazing thing that I have ever witnessed; however, the hours after were the most agonizing. I looked at the skin around his bracelets and examined his hands for the first few hours until my dad pulled me in the hallway and said “son he’s alright, he doesn’t have it.”

My ignorance surrounding EB, even though I have had it my whole life, was very evident to me three years later when we welcomed Sydney into our lives. Our baby girl was born and had no signs of EB until we brought her home and I took the band- aid off of her foot. That is one moment in my life I will never forget. I knew instantly what was wrong. I knew at that point she was going to live with that question. Sydney is almost eight months old and is doing great so far. She has some break outs on her neck, hands, feet and legs but is an incredibly strong little girl. She doesn’t even realize there is anything “wrong”. She is so amazing. Her brother is blessed beyond his wildest dreams because it’s going to make him that much better of a person. Oliver likes to help change her bandages and corrects me when I forget to put Vaseline or cream on a certain spot.

Lastly, the most amazing result that has come from both my daughter and me having EB is my wife Natalie’s response. My wife does not have EB. When Oliver was born and didn’t have it, I would let her know how “lucky” we were. When Sydney came into our lives, I understood that this would be a difficult endeavor but my wife had no way of knowing. She never wavered or told me to deal with it; she instantly stepped up to the plate. She spent time researching while asking questions and learning to care for Sydney. She has been the most amazing part of this whole experience for me, because I didn’t think people unfamiliar with EB could just jump in without asking why or blaming others. She has taken EB and turned it to a positive! She has decorated Sydney’s Room in butterflies. She wears her EB shirt and she wears her “ask me about EB” pin proudly. I have never been more amazed with my wife who gives 100% unconditionally without having known anything at all about EB. She is making the best of a very tough situation.

I’m not sure why I did this today. I stumbled across your blog and it pulled this out of me. I have never shared these thoughts before and it has taken me a few hours to do so. This has selfishly always been my “problem” even though I know deep down that my Dad, Mom, both Sisters and brothers have also sacrificed a lot. For me, I always felt this EB burden is mine and I have to deal with it. I have learned that my experiences with EB are no longer just mine--I have a story to tell! That is what my daughter has taught me.

Brian

Brian Amos and Family