The Newest, Lowest Chapter of My Life

I have been dealing with chronic illness for 30 years. I remember being healthy. In fact, ages 16-almost-18 were the best years of my life. I had wheels. I was a good kid. I got a job and joined every club I was interested in at my high school to avoid my parental units and the daily abuse I got at home. I got a full time job. Full time school.  I was planning to move in with a good friend of mine my senior year and then the parentals threatened me with being a runaway and having a police record. It was their last-ditch effort to control my life and it almost didn't work. Almost. Instead, I got very, very ill. It was the beginning of my autoimmune issues. I missed the last two months of my senior year in high school. I missed out on my prom and nearly my graduation. I was an ace student and had no trouble keeping up my grades, even when I was very ill. I graduated with honors. I looked like a monster, however. It was a very nightmarish scenario for me, a 17-year-old brainiac hippie nerd who didn't feel anywhere near attractive to begin with. I looked like a monster. I will never forget going to the pharmacy and a little kid asked his or her mom, "What's wrong with that lady, mommy?" Her answer: "She must have been in a horrible fire." Yes, I looked that monstrous.

When I was a little, little girl, my mother worked for a bank in the south side of our city - the "bad" end of town. A lot of vagrants, pushers, prostitutes, etc. worked in that area. I remember being a little girl and asking my mom "What's wrong with that man, mommy?" He was known as the Boil Man. He had a serious case of boils over most of his body and I don't know if he was homeless, or was living in that area. When I was 17, I had become the modern equivalent of the "Boil Man" and I felt like a freak.

Little did I know 30 years ago that I would STILL be suffering from that illness. Fortunately I am not permanently disfigured other than a couple of small scars, but I do have my moments with skin crap, chronic migraines, eye and visual impairments, failing kidneys, pervasive infections, etc.

While I don't look like a monster anymore from the waist up (most days, anyway), I still feel like one. My eyes and head have become the new skin disorder. Vasculitis is ruining my legs. I thought getting away from the monster and my mother would cure me, but it didn't.

Today has become my new low. I turned down an HR position that I know I would love. I can't guarantee my health to this company, however. I can't guarantee my visual acuity. I can't guarantee ANYTHING anymore. I meet with an attorney tomorrow who specializes in disability. I hate that it has come down to this. I also hate that his paralegal was rude and condescending with me on the phone. I'm NOT an idiot. I've been a paralegal. I just don't know this area of law. I had a simple question.

I don't know what my future holds, and I'm frightened. I want to be relevant. I want to make a difference. I want to be meaningful. Right now, I'm just not feeling any of it.