The doctor's had no idea why the little baby's skin kept coming off. Removing the ink from her feet, removed the skin as well. She was missing 80% of her skin in a matter of hours. Her mommy was not allowed to touch her.
This was me. Born February 21, 1984... It was not even until that same year that an organization was established for my disease. Recessive Dystrophic Epidermolysis Bullosa. I was saying it by age 2. My mother quit her military career to take care of her new disabled child. Staying home, as my dad was gone 3 of 4 weeks a month, took a toll on her. My dad was in the Air Force Band of the West. He plays lead guitar. My mom took care of me. She wasn't perfect, of course, but she handled it best she could. My grandmother also helped a lot in the first years of my life, as everyone else was scared to baby-sit for fear of injuring me.
I was home schooled for elementary school. The doctor's advised my mom it would be best. I tend to believe this is why I have social problems now, since this was a critical stage in developing social skills that I missed out on. I was in Girl Scouts, but, a lot of things I could never participate in.
I was a dorky kid. My dad got a job with the state; handing out food stamps. He never quit playing guitar though. He was always in a band or another. Still today he works at the same job and is playing his guitar on weekends.
And that was life for a while; I'd have a teacher come to teach me twice a week. I loved playing video games with my dad. If I wanted something, I'd ask him. My mom was the strict one. My parents were having a hard time getting along, experiencing issues a lot of families go through, money problems, disagreeing on many things. By this time, I could realize that they probably wouldn't last.
Somewhere around the age of 8 or so, I had surgery on my esophagus so I would be able to eat better. The disease also causes strictures [really small areas in the throat] to form from the friction of food passing through & irritating the lining, so by this time it was difficult to nearly impossible for me to eat. I would gag on anything, sometimes even my own saliva. I had this done on two separate occasions. The surgery was a success the first time I had it. On the second time, the doctors perforated the lining of my esophagus, causing me to be unable to have anything by mouth for 2 weeks, have a central line IV directly in my chest, &, to top it off, they said the surgery was no longer an option in the future. Therefore I would have to get a feeding tube if I was ever unable to swallow again.
In sixth grade I started going to school. It was hard for me. I had separation anxiety from my mom. The kids were evil. I didn't realize that I truly had no friends until after the fact, but, it was still hard then. I think the only reason they paid any mind to me was because they got to get out of class 5 minutes early to help me, or, I let them cheat from me since I was such an attention-seeking geek.
By the time I was entering High School my disease had made me lose complete use of my hands. They were completely fused together in a sort of "mitten". This meant, as well as adjusting to High School, I now had to learn to write again. I use a cuff that goes over my hand & holds the pen [or utensil, hair brush, razor, etc...]. I was in Choir [as I found out was not my thing] most of High School, as well as Honors, Advanced Placement Classes, Gifted & Talented Program & the Science Academy. My senior year I wanted to take Art, I showed the teacher some things I'd done on my own... & he placed me in Art 2. If it wasn't for him, I would still believe I would never be able to draw. It's because of this experience I finally knew I would do something in Art someday.
Eventually, my mom & dad separated & I lived with my dad for a while. After a long separation, and my mom trying to "find herself", my parents tried to get back on track; but it didn't last. My dad was focused on everything she did while she was away; I can't say I blame him. A lot went on during the time she was gone that would never be able to be reconciled.
I got off the school bus one day to my dad packing his SUV. He moved out that day. Later on we found out he was seeing another woman; but not just anyone. My uncle's [yes my dad's brother] ex-wife; my ex-aunt; my cousin's mother. There had always been tension between her & the rest of my family, for too many reasons to list. It still hurts how my dad left, now, I realize it was for the better, but I just wish he'd have gone about it differently. We still have trouble getting along sometimes, but I believe things are slightly better than when he first left.
It wasn't until senior year that I finally got a boyfriend. I met him through one of my guy friends. He went to a different High School than me; he was semi-"Goth", if you will. We were not very alike. As I look back on it I believe we got together merely for the purpose of having a boyfriend/girlfriend. But, as I always do, I became overly attached way too quickly. I lost my virginity to him after 2 months. He started to change me quite a bit. I was acting & dressing differently. I was going to Church for once, but just because I got to see him. He was a really sweet guy. Treated me like an angel, learned all about my disease, did my skin care... but he had no motivation. He was not going to graduate & his grandparents were kicking him out. He had no where to live. I begged my mom for him to stay, just so he could graduate... & finally, after tons of begging, bargaining & pleading she allowed it. And I was glad, and still am, because if she hadn't, it would have take me that much longer to realize he was [and is] not what I wanted. He graduated, & we went our separate ways.
I dated a little here & there, nothing much. I was now attending a local community college... taking Art classes, Biology classes, Math classes. I was flip-flopping on what I wanted to major in. Math teacher? No, I hate kids. Biology? So many limits because of my disease on what I can and can't do. Again, back to Art, what I believe now is my calling.
Then along came Jason. We met on the internet, yes, I know, it�s dangerous. We began chatting online more & more & it became apparent to me that �this one� was different. He knew right away about my disease, it didn�t seem to bother him. He was smart, charming & knew just what to say. I felt like I�d known him forever. We were so different, but it was good; we made up for each others faults & still do. We moved rather quickly, I was sneaking him over to my house way before my mom knew. My mom & I were arguing a lot. Not getting along at all. One night, after Jason brought me home, I had had enough. I started to pack. Calling Jason right after he got home, I asked him to please come back & get me; and that was the last time I spend the night at my mom�s.
I lived with Jason & his mom [who so lovingly let me stay] for about a month until Jason & I found an apartment. Both our families were so mad. We moved out kind of quickly, not looking for a great apartment, so after six months of apartment-from-hell we moved to where we are now. Yay! It was hard, I�m not saying it wasn�t & still will be, but I�m glad I left. Jason & I have had problems of course, but that�s expected. I love him & I know he loves me. I feel like he�s my soul mate. We take care of each other. We would be married by now, but I cannot get married; if I would, I�d lose my medical coverage, and I can�t have that. I feel as though we are though, & that�s what matters.
As of now, I�m doing well. Getting back into college after a year off, deciding on my career, I have a wonderful person to spend my life with & am looking forward to the years to come.