I was born September 29, 1977 in Poughkeepsie, NY. My father has Dominant Dystrophic Epidermolysis Bullosa, and a day or so after my birth it was evident that I too, had EB…I always felt different, but my parents instilled in me that I was as normal as any other kid…I just happened to get boo-boos. They always told me I was special, unique and blessed. I remember always having to explain that I was not contagious, that being my friend wasn’t going to make you get sores. Those that mattered accepted me whole-heartedly. I have the friends that I have had since I was 4 years old. They say they saw a little girl on a swing set and wanted to come over and play…that it didn’t matter if I had blisters or scabs, that my soul was strong. They didn’t even notice my bad skin. I remember always being self-conscious…always trying to hide myself, because I was pretty used to the stares, even if they were completely insignificant. But, when I look through the family photo albums, all I see is a smiley, happy, exuberant child…I don’t see the insecurity I have lived with most of my life. And, that is where I strive to be today for my son. Filled with the positive affirmations for myself that I am special, I am worthy of life’s precious moments, and that EB is a part of me, but it is not who I am. I want to instill such adherence to life’s possibilities for Liam…I want him glued to success and happiness…I want to be able to give him the support and comfort he deserves!
I have been told that words are one of my greatest assets, that I have a gift of having a way with them. I suppose that instead of sports and fashion shows I turned to artistic self-expression…being the rebel that I am, I enjoyed placating the negative parts of my existence for so long. I tried being proud of myself for the tough, hardened exterior I portrayed. It was almost as if EB had given me a chip on my shoulder, my thoughts existing as if I had no regard for who I really was. I was a rebel, a lost cause. I was troubled and destructive…damaged, not up to par. I did what I wanted, when I wanted and I didn’t let anyone stand in my path. This trait of defiance actually fared well for me as life moved along, but as a young adult I felt so lost. I really felt like I didn’t fit in anyplace…that was hard. I achieved many things in my life, even though I always felt a sense of inadequacy. I went to college…first for English. Decided that Journalism wasn’t for me. I went to school to be a Professional Chef…that didn’t work because it was too hot in the kitchen. Then I found my calling…I took up some medical courses, and became a nurse. I love my career…my background in dealing with medical issues has helped me immensely. Not only do I have acceptance and compassion for all medical afflictions, but I also have extensive knowledge in wound care and treatments! (Two very intensive and involved fields when pertaining to EB!) I suppose I always took an extra special interest in the medical field...always wished that I could make the pain of those that suffered more bearable. I have found through working with others that the best medicine truly is laughter and compassion. Being able to relate to the struggles of others has made me an awesome nurse. I am proud and aware of the person I have become…I have faith in my ability to help others, and it has made me overcome things that I never thought were possible to hurdle through! EB has made me the tolerant, compassionate, outspoken and perserverant person I am today.
Liam could go on and on about how different aspects of my illness have impacted other areas and experiences, but all in all, the only thing that really matters to me is that I have been given the chance to raise an extraordinary little baby boy, my son Liam. Liam also has EB. As much as I refused to consider the fact that he had a 50% chance of carrying our EB gene, I was confident in the possibility of him being EB free. On October 19, 2010 a very special little man was born to my husband and I. Liam David Curtis was born at 1:26pm, weighing 9 pounds 9 ounces and measuring 22 inches long. He was so perfect. His little chubby body was free of blisters and denuded areas. I was ecstatic…I believed that I had proved my intuitions correct. 24 hours later they brought him from the nursery to show me a blister on his sacral area…and I knew instantaneously that it was EB. He was afflicted, and my life had forever changed. My hopes and dreams weren’t shattered, my plan wasn’t askew…things were just altered, aspirations remained…modes and modalities were just adjusted. I knew that there were no two more appropriate people on this earth to take care of that little man than my husband and I. I am grateful that I have been given this butterfly, I am proud that I was chosen to take care of him and raise him as carefully as I can. He is the sweetest, adorable and snuggly little man…he is more than I could’ve ever dreamed of! His EB is really bad on his feet right now. His fingers are also pretty sensitive. I have to drain blisters every few hours to keep them from spreading. He doesn’t exactly enjoy this process, but then again, I’m sure I didn’t either. He is still very young, so I am not sure what I will be dealing with as he grows up a bit. I still have crawling and walking to get through!
Having EB has made me a sensitive, caring and compassionate person. It is evident in the 3 months that I have been a mother that my EB has given me the gift of experience and sympathy when it comes to my son. I will be able to guide him through his tough times, times when he thinks that no one understands. I will be there for him when he can’t play the sports he would like to. I will be there when he cries “Why? Why me?”. I don’t claim to have all of the answers. But I have come to a place in my life where I accept that I am different. And, I am…by far…different. I think it made me stronger, more resilient, more accepting and more in tune with myself. It has humbled me, stopped me from getting ahead of myself. It has been challenging and painful, emotionally and physically, but I have things in my life that others don’t. I have friends that have seen me for me since the beginning. I have family that has supported me through whatever it has been that I needed to go through. I have a wonderful husband who accepts and loves me for who I am. I have a son who is special, just like me. I admit to my uniqueness, I know that I am blessed. EB is my skin disorder…Melissa is who I am.
Wallkill, New York