Trigger warning: Domestic violence, violence against women
I have been writing stories all my life. I have hundreds of journals from the last 27 years. A lot of it is diary writing, just a record of what I did and how I felt about it. The rest is stories, mostly fantasy and science fiction. Some fan fiction from before I know the term. Lots of magic and supernatural powers so that characters could solve their problems with a flourish.
It has only been in the last few years that I write about the darker and more emotional aspects of my life for an audience. Before I started MastAttack, I wrote exclusively for myself. I was never interested in having an audience.
For me, the word ‘story’ has a connotation of fiction. Stories can be based upon truth but they are sharpened toward a particular point. When you tell stories, you guide your audience towards an end that you have engineered. Stories are always flavored by your intention in writing them.
This is one of the reasons I have resisted writing an all encompassing version of “my story” for public consumption. I’m not sure how to tell the story of my life because I don’t know that I understand it well enough. I don’t really know what path I should take to walk people through it. I don’t know where it should end.
I have the gift of a strong voice that allows me to be heard. But I don’t always know how to use that. When you are telling the story of your life, it’s not enough to be loud.
It’s scary to write it all down. Remembering brings up fresh fear and anger and despair. But I don’t think I have a choice anymore. I think I have to. I have never been more aware of how vulnerable I am as a chronically ill, rare disease patient. This is all I have. I have a story.
Both of my parents were raised in poverty. My mother is one of five children in an Irish Catholic family who grew up close to the projects but not in them. Her parents were divorced, a scandal in a Catholic family in the 60’s. My father was raised by his mother and moved around a lot. She worked as a seamstress but also had jobs on the side. His mother was murdered in 1969 by her boyfriend. She died facedown in a pool of blood in her backyard. My father ended up in foster care.
My parents married in 1983, the year I was born. My father was a parts manager at an auto dealership. My mother ran a family daycare out of our house. They owned a little white house and my sister and I were raised in it. Both of my parents worked very hard so that my sister and I would not experience some of the hardships they were raised with. We were solidly lower middle class but the specter of poverty is hard to lose. Both of my parents were nervous about not having enough money. They instilled both my sister and I with a rock solid work ethic. We both learned to be nervous about not having enough money.
I started babysitting when I was 9 and babysat often for various families. I had a job the day I was legally allowed to work part time. By the time I was 16, I worked full time for a non-profit childcare center. I worked full time to put myself through college. In grad school, I had a research assistant position, and then a teaching assistant position, at my university. I taught Microbiology. I also worked full time as a lead pharmacy tech to pay my bills. Since the day I turned 14, I have only been unemployed for nine months.
Despite working constantly while I was in school, and not having terrible living expenses, I was broke all the time. A lot of my money was spent on health care. I wasn’t sick like I am now but I had frequent acute health issues. I had chest infections and walking pneumonia frequently. I had sinus infections so bad I eventually needed sinus surgery. I had really bad bile reflux into my esophagus. I was diagnosed with rheumatoid arthritis in 2007.
I spent so much money on copays, gas getting to appointments, prescriptions, and tests. It was expensive and inconvenient. I could still function but it was difficult and frustrating.
Eventually I started getting sick in a way that wasn’t just a nuisance. I got sick for real.