I have heard of a site that tears apart MWOPers but I had never been there. Comments made about SNORT made me curious and you know what they say about that. I wish I hadn't gone there and read the comments but I can't go back in time. I very rarely say something judging Jen in a negative way and am usually complimenting her on something. I guess a few times lately I have been more negative than positive and the one good thing reading over there did was remind me of that fact. I have no obligation but I am going to answer some of the things that were addressed on that site about my life. In one way, I hesitate to do this because of that whole, "The lady doth protest too much," thing but I have decided to do it nevertheless. I thought I would give some of my background for this post since I had intended to give a little more of everyone's history anyway.
I was born in Kansas City, Missouri in 1975. So yes, that makes me 37 years old. I did pretty well in school, was in honors classes, etc., but I wouldn't say I was a genius. We moved a lot because my Dad was in charge of paying bills and he didn't do very well at his job. Yes, that means we got evicted a lot. We had the money, my Mom has no clue what he managed to do it. She wasn't paying them because at one time she went to college and worked full time, then after that she worked full time and was at work during the hours she could have paid bills. Remember, there was no internet then for you to submit them! You could mail them but we really didn't trust the mail. I asked her one time why she kept trusting him when he wasn't paying and she said it was like disbelief, she should have been able to trust her husband! I can see that one. I can't tell you the first street I lived on, the last one I lived on before I became an adult, or pretty much any of them in between because I don't remember. I do know I have lived in KC, MO; Grandview, MO; Raytown, MO; Springfield, MO; Hemet, CA; and Orange County, CA. I currently live in Hemet.
Other than the moving, things were pretty normal until I was about 12. My Dad was sick a lot when I was younger as well but I really don't remember it. My Mom worked for the USDA as a freight rate specialist. Yep, she was the one responsible for making sure that our yucky school meals arrived as scheduled. I used to give her a hard time about that. I complained once about the black cherries in our cherry cobbler and she started laughing. I guess they were some gourmet something or other but us kids had been turning our noses up because they didn't look right. Anyway, she had a really good income and if I asked for something, I usually could have it. The only good thing about that is I wasn't a naturally greedy kid and really didn't ask for things. I was very active with other kids before I became a teenager. I actually got out, played tag, rode bikes, etc. None of that changed until I was a pre-teen.
My Dad was not a predictable. He worked for Universal Underwriters for a short time then chopped off the tip of his pinky in the printing press. It did take time for him to recover, but it seemed that he lost all interest in working after that. For the rest of my childhood he did a little handyman work, worked at a hardware store and that's about it. I think he was working at the hardware store when things started really going downhill.
One summer, a friend of my Mom's at work invited us all on his sailboat. It was a fun summer but my Dad got sicker every time we went out. He wasn't seasick, but he had this weird rash on his face and he just felt ick. That started the first round of medical drama. I was dragged from pillar to post, relative to relative as Mom took him all over trying to find answers. She even ended up at Duke University at one point, but that's later. Finally, he was diagnosed with Systemic Lupus and the rash on his face was one of the biggest signs. Its called a butterfly rash because that's what it looks like. I started picking up second hand nursing journals from garage sales and every other medical book I could get my hands on. For me, knowledge was the key to everything. As long as I knew what was going on, I was okay.
Then came the day he woke up with a knot on his side. When he went to bed it was the size of a marble and when he woke up, it was the size of a grapefruit. I will never know what caused the original infection, whether that was on its own or helped along, as I will explain later. He went to the doctor and they lanced it, as they generally do with lumps on your skin. After this point, things are not necessarily in order as they happened because my short term memory is shot and my long term memory has holes worse than Swiss cheese. At some point the wound in his side was 13 inches across and all the way down to organs. It wouldn't go away and was packed more then daily with gauze soaked with a bleach solution. Packed literally, all the way down to the bottom. Sometimes my Mom was doing it, sometimes a home health nurse was. No matter who accomplished the grisly task, there was always screaming. I seemed to hear that screaming in my head even at school. And school was my refuge. I no longer went out and played with friends, I came home and hid in my room. It wasn't far enough.
There were many times he ended up in the hospital, in the intensive care unit, after the infection would get too good of a toehold and his white count would be in the hundreds of thousands. Sometimes Mom was home, sometimes she was in the hospital after he was in a regular room because he needed 24 hr care and our insurance wouldn't pay for it. Those times I was with relatives. I can't count on both hands the times he was "dead" and brought back. My grades slipped more and more but I didn't care. I didn't know how to deal with everything and I stopped eating what little I already had. My grandmother (Dad's Mom) was there a lot when she didn't seem to care about our family until her son got sick. And when was there, she told me that if my Dad died, it would be my fault for stressing him too much. I guess I was her stress relief doll. My mental state was going downhill rapidly. Mom was so busy with Dad that she was just glad I wasn't causing problems and making things worse. I didn't tell her what grandma said. Mom and I had always been close but this experience really cemented our relationship. Somewhere during this time, my Dad stopped walking and was in a wheelchair. Sometime about how the Lupus messed with his muscles and joints and now he couldn't walk.
He was in physical therapy to walk again as well as heading to the hospital for septicemia every time you turned around. I am not sure at what point, but the physical therapist told us that he was faking and should have no problem walking. That was the beginning of the end. Then we found out that suspicion about the infection had caused the insurance company to put him in a hospital room with a camera. He was discovered re-infecting himself with bodily fluids. Trust me, you don't want me to be more specific than that. People don't normally have an infection for years on end. He had made several medical journals since his case was so unusual. I was 17 when things just became too much. I didn't want to do to school and Mom snapped, telling me that if I didn't want to go, I could go a mental hospital to figure out what was up with me because pretty much every day I didn't want to go. She wasn't serious, she was just stressed, and shocked when I told her that was fine with me. I was tired of dreaming of my Dad in a coffin, I was tired of him calling the school and telling them I was sick so I had to stay home and take care of him (Yes, folks, this is true Munchausen by Proxy), I was tired of not being able to think straight, I was just plain tired.
I went to The Kansas Institute and was gone for 8 weeks of my senior year. A physical there revealed that I had bleeding ulcers, weighed 86 lbs and was completely run down. Big surprise, huh? Imagine my shock when two weeks in, I report to my counselor and my Dad is sitting there. He is so sick and twisted that he had himself admitted to the same hospital so he could still influence me. I lost it and the dreams began. Not only was he making himself sick and running me ragged, he had been abusing me all my life. I had a lisp when I was young, he wouldn't give me food until I lost it. Its amazing how fast that can happen when it has to. My counselor was shocked at my reaction to him and started digging. Did you know he was diagnosed as schizophrenic at 13 years old? No? Neither did my Mom or I. My grandma refused to believe it and wouldn't let them help him. He flunked the army psych exam later but that wasn't his fault either. Did you also know that untreated schizophrenia causes actual sores/lesions on your brain? Yeah, no wonder he was nuttier than a fruitcake. Suddenly, some things started coming together for my Mom. I was perfect at putting my toys away at 2 years old. Not good at it, perfect. In fact, lots of things made more sense when she looked back. And she didn't like the picture. I wasn't there when she threw him out at 3 am but I would not have objected.
Some things were not remembered, but they had left marks. I was unable to take a shower without feeling like there someone in there with me. Assignments at school had to be perfect or they were crumpled up and re-started. My head constantly felt like it was stuffed with cotton and thinking was hard. I was the easiest person anyone knew to startle, but my reaction was far from amusing.
This is getting pretty long so I am going to continue it later. I guess you could call this part, The Early Years. I am not typing this for sympathy, I just thought people might like to know what makes me tick a little more. I am well aware other people have had a harder life, this isn't a, "Who had it worse" contest. All I can do is talk about my own life and I do regret that theirs is more difficult.
Part two later.