Finding out I have FD felt kind of the same way for me as finding out I was having seizures; it felt really good to have someone tell me what was wrong, at the same time it felt horrible to know I have something for which there is no cure. I've always told people that you can't put me in a box; I don't fit any stereotype, and I like to stand apart. I'm a fighter.
My parents knew there was something wrong two months after I was born. My mom couldn't breast feed because I couldn't suck to get the milk out. She thought I was getting enough to eat, but I wasn't, and was diagnosed with severe anemia as a result of not getting the nutrition. My body was allergic to everything, including the material used to make diapers, and would break out in hives everywhere. At six months I stopped growing, remaining the same size and weight until I was one. It didn't matter what my parents did, I wouldn't grow. Even though my intellectual growth was higher than most, my body was always behind. In third grade, I stopped growing again. At the end of fifth grade I still weighed the fifty pounds I weighed at the beginning of third grade. My parents were always poor, and never had insurance, so they didn't take me to the doctor. This was also b/c every time they would take me, child protective services would get involved b/c they felt my parents must be abusing or neglecting me for me to always be sick, underweight, with rashes and bruises everywhere. I never thought much about it, b/c my family's faith was very strong, and we would pray together about everything, and no particular affliction would last very long. It wasn't until college that I realized that I wasn't like the other students. They would go out at night, hanging out and having fun, and I would be exhausted after my classes, barely able to walk back to my dorm. When I started going to the docs on my own, and getting lists of things wrong with me, I started rebelling against everything. They would tell me things I shouldn't do, and I would go out and do them, just to prove I could. I got angry at God - really angry - and kept telling him that I wasn't Job; I couldn't handle all the trials He kept allowing in my life. At one point, I decided to live my life as though I were dying, like the Tim McGraw song. I didn't go sky diving, but I went mountain biking and rock climbing, I got out of my shyness, and started speaking in churches and singing the lyrics I wrote for anyone who was willing to listen. I even went to Russia to work with the street kids and orphans.
Now, I've finally come to terms with it. At least as best as anyone can. I don't regret anything, and I cherish each day. If today is the last day I have, I want to look back on it and know I lived it in the best possible way. I still ask people, "If you and I get really close, and five years from now I die, will you regret having known me?" And that's how I choose to live, so there are no regrets.
It still hurts when I see an older couple walking down the street, holding hands and obviously very much in love, b/c I think, 'I will never have that'. But who knows, a miracle could happen and I just might experience that after all. I'm not afraid to fall in love, I'm not afraid to speak my mind or get close to people. I choose not to share about FD with people, b/c I don't want them to feel sorry for me. Some still feel sorry for me when they find out I have seizures, b/c that's the one thing I can't hide. I don't want to live my life as 'that girl who has seizures', or 'that poor girl who has FD'. Like Mandi wrote, "I am not Epilepsy". And I'm not. I don't fit in that box. I am strong, confident, intelligent, kind, compassionate, blunt and stubborn. But I am not a disease; I am a blessing.
Whatever the docs tell us, it helps to explain certain things, but it's not a fortune cookie; it can't predict the future. My mom's had cancer three times, and each time the doctors predict how many months she has, and each time she comes through much stronger than she was before. She's my role model, b/c she too, lives her life with a smile on her face and joy in her heart. There are many things she and I still want to experience together, and right now God's giving us the time to do those things.
I know this is incredibly long, but this is the first time I've written or spoken about how FD affects my life. Sometimes I'll get melancholy and talk with my friends about dying young, but I never explain why I think about it so much. Maybe I should, but right now I'm not ready. I want to have a job, and fall in love, and have my mom fix my hair on my wedding day, and my dad walk me down the aisle. I want to experience the joy of being a mother and watch my child take their first step. I still want to climb Mt. Rainier, and experience the wind rush through my hair on the back of a horse. I want to go back to school, and work with terminally ill kids, and make them smile and laugh, and leave this world with peace and joy, knowing that they have never been alone. God's promised me a hope and a future, and even if that future is just today, then I'll rejoice and be glad in it.
I think, in a way, I'm one of the lucky ones, b/c I've dealt with my own mortality young. Instead of wasting years doing stupid things, I've spent those years holding nothing back, giving everything I can. Death can't catch me by surprise, and not being afraid of it simply means I can live my life to the fullest. And I count it all joy.
"For I know the plans I have for you", says the Lord. "Plans to prosper you and not to harm you. Plans to give you Hope & a Future."