Things About Me, Part 1

Since most of the people that know me in one way or another haven't made it on to the Dreamwidth boat yet, I thought I should give some background on myself for the inevitable new people I get to meet.

I'm disabled. This is not always readily apparent, either online or in person. Sometimes I'm in a wheelchair, sometimes I can walk for a few hours without significant impairment. I've had a progressively debilitating muscular/neurological problem for years, but only received a diagnosis a few weeks ago. It's called Postural Orthostatic Tachycardia Syndrome (or POTS). It's essentially a failure of the autonomic nervous system (that's the portion in charge of things you don't have to think about to do, such as breathing or blood circulation). Here's a relatively quick list of my symptoms: severe myofascial (muscular) pain, exercise intolerance, extreme fatigue, muscle spasms, spasticity, fasciculations, cold extremities, disorientation, shortness of breath, muscle weakness, severe tremor, visual disturbances (I see flashing lights around the edges of my vision that look like a cloud of fireflies or the sparks flying off of a sparkler), nausea, vomiting, brain fog, short-term memory loss, problems finding words, depression, insomnia and hypersomnia (a lovely combo, I might add), sleep apnea, fear, nervousness, orthostatic hypotension, ataxia/poor coordination, and difficulty concentrating. I think I remembered everything in there. I've been repeatedly misdiagnosed with things ranging from anxiety (it stopped once we started treating the POTS) to malingering. I've had supposedly reputable neurologists tell me to find God and "examine my lifestyle choices" because medicine could never help me, I had one tell me that I was eating tainted chickpeas (except that hasn't happened since the 18th century and that was in Spain)... it's been an interesting journey in to the vagaries of medical science. I also have high functioning Asperger's syndrome, though that's a subject for another entry on another day.

The amazing thing in all of this is that once we discovered the actual problem, we got rid of most of those symptoms. We're still fine-tuning medications, but I went from nearly bedridden to shopping for a gym membership literally overnight. It will still be a while before I can do things such as exercise given that the medications are still being adjusted, but I will be able to, and that's something I never thought I'd even get to consider again. An even happier realization is that I'll be able to work again. I'm a visual artist, and an artist with a severe tremor can't accomplish much. It makes it a bit hard to draw or paint, for one.

I'm happy to answer any questions that anyone has on this. Feel free to ask away!

Things About Me, Part 2

This is one of the few reposts I'll ever make from my LiveJournal.

In December 2001, I was raped in my sleep by an ex-boyfriend. I was incredibly sick, it was the middle of finals, and I'd taken sleeping pills. He worked nights and came to my dorm room sometime after he got off of work (around 8 AM or so) to "check on me" because I hadn't answered the phone. I never heard it ring and still don't believe he ever called -- he knew how deep of a sleeper I was. My mother used to say that I'd sleep through the end of the world.

He asked if he could come in because he was worried about me, and I said that I didn't care; I was going back to sleep. I fell back to sleep almost immediately, and the next thing I knew it was happening (I'll spare the gruesome details for the benefit of those who might find it triggering). I couldn't manage to get out of bed until about 4 pm. I agonized over what had happened for hours. For a while I actually wasn't sure what had happened, but then I found the condom he used, still in my bed. I spoke to two good friends about it; one is no longer a friend (we'll get to why in a minute). I decided to wait to do anything until I could speak to him; I wanted to make sure he knew what he'd done. I talked to him online, and he admitted what he did (and in writing at that). Then he called me, and he offered me $500 to not go to the police. I hung up on him, and he started calling. And calling. When the phone wouldn't stop ringing, I went to the good friend's room, and I called the police. I was at the hospital for 4 hours getting the rape kit done. It was traumatizing too, but I thought it was important to do. I got home at 5 AM. The police took all of my bedding as evidence (along with many other things from my room). I didn't get it back for about a year. I spent hours testifying in court on multiple occasions. I spent hours upon hours testifying to university officials to try and make sure that he couldn't go near that college campus again. He was expelled from school. The trial wasn't until the next summer; it lasted (as I recall) 4 days, and the jury acquitted him after 3 hours of deliberation. I think it's important to note that his confession to me was admitted as evidence. Juries aren't always clear on the concept of reasonable.

As to that friend who no longer is one? She testified for the defense as a witness against my character. She'd only even known me for less than a year at the time of the trial... and to this day I don't know exactly what she said, and no one will tell me (I wasn't allowed in the courtroom aside from when I was testifying because I was a witness -- my family and a friend, however, were there). After the trial, the university elected to give him a special set of appeals and they started the entire process over again. It didn't end until the summer of 2003; I had to retell the story to a new set of university officials, and he used every new appeal he could get. Money and expensive lawyers talk, apparently. I can't go back to school, at least not there (as much as I've tried), and I have post traumatic stress disorder resulting from the assault. But every time I say this, I get a little stronger, a little healthier. And I hope that it inspires others to break their silence, because the shame is not yours. It's on the head of every person who has perpetrated this violence.

And you know, in all the time I've ranted about this, one comment I made has stuck in my head, and it always cheers me up a little. "At least, unlike his parents, he had good enough sense to use a condom."

I'm Stacey. I'm a survivor of sexual violence.
No Pity. No Shame. No Silence.