By Wendy Burnett
Day 8 – The Health Activist Writer’s Month Challenge (#HAWMC) prompt for today is actually “3 Truths and 1 lie. Tell us 3 things that are true about you, your condition, your Health Activism, or your life. Now tell us 1 lie. Do you think we will be able to tell the difference?”
I’m not really crazy about this one, and I missed the Saturday post (that I did like) so I’m going to switch them out. (Besides, I’m a crappy liar, and don’t have much chance of coming up with something you’ll believe.)
So the prompt I’m working from is: “5 things that changed my life. For better? For worse? List 5 things that changed your life as a patient, caregiver, or Health Activist and how.”
This is a bit of a tough one for me, since most of the things that have changed my life have not been pleasant to live through, and are not fun to think about. One of the things I’ve learned in my 50+ years is that enjoyable experiences tend not to have lasting effects on my life (and they never last long enough, either.)
The experiences themselves may have been unpleasant, but mostly they’ve had good results (eventually.) I look at the nasty bits of my life as learning experiences because every one of them has taught me something I needed to know, pushed me out of my comfort zone, or both.
I guess the first and most life changing experience that I can remember is my mother “kidnapping” me from my dad’s family when I was 5 years old. Although it can’t really be characterized as custodial interference (they were still married,) it was most definitely parental kidnapping, since living with my daddy and his mother was all I could remember. From what I was told, she walked out on us when I was about a year old, and until about a month before we left she lived in another town with her sister’s family.
She took me from a family where I was loved, spoiled, and treated like a small human being into a family where I was physically, verbally, emotionally, and sexually abused for the next 12 years of my life. As horrible as it was, it gave me the strength I was going to need later in my life, and played a huge part in making me who I am today. It was also the basis for the next set of life-changing experiences (which was actually a series of events over several years.)
At 27 I had a hysterectomy because I had cervical dysplasia, and although I’d never “forgotten” that I’d been abused, I had managed to block the worst of the memories until they were triggered by my surgery. It got so bad that in 1991 I fought with my husband until he “allowed” me to go into (2)therapy (he didn’t “believe in head doctors.”) He made my home life a living hell from the time I started therapy, and the stronger I got, the more desperately controlling and verbally abusive he got, until I decided I had to do something.
I’d wanted to go back to school since before we’d met, but once we got married, every time I brought it up he’d get so bad I’d give up just to keep the peace. After several years in therapy, the situation at home had gotten so bad I decided I was going back to school one way or another, because I had to have some way to support myself if (when) we split up. I did the research before I brought it up, and one of the requirements for admission was proof that I’d had the MMR vaccine.
Since I had no way of finding my vaccination records, I went to the health department and got the first shot. Two days later, my hands were swollen to double their size, I couldn’t bend my fingers, and I was in agonizing pain. A couple of months later, (3) I had a diagnosis of fibromyalgia and non-specified rheumatoid-type arthritis and was spending most of my time learning to deal with multiple medications and constant, horrifying pain.
You might think that this would put my plans to go back to school on hold, but instead, it simply made me even more desperate to get a degree because of my husband’s reaction. He didn’t deal well with having a sick wife, and was convinced that I was faking to get out of my “responsibility to take care of HIM.” There were constant demands that I continue doing everything I’d done when I was healthy, constant complaints about the things that were changing and the expense of doctors and medications; and even complaints about the loss of my income, when he’d spent the previous 5 years complaining about me getting a part-time job.
I finally managed to (4)start school in January of 1996, and it was wonderful. My husband’s behavior continued to get worse, but school was great; and between the friends I was making at school and the therapist I’d started seeing again, I had the support I needed and wasn’t getting from my family. By June of 1998 I had a good job and I (5)walked out of my marriage after 21 years. For the first time in my life I was on my own, taking care of myself and making my own decisions. No more pretending to be something I wasn’t to protect myself from my family, no more hiding what I thought and believed, and no more having my life controlled by abusive men. It was amazing.
So how does all this have anything to do with my life as a patient and a health activist? After all, most of it happened before I even got sick, let alone started any kind of activism.
True, most of what happened was before I was diagnosed, but it was a continuous chain that shaped me and my life. It turned me into the person I am today, taught me what I needed to know to understand and empathize with the experience of other chronic illness patients, and put me where I needed to be to do what I do. A lot of it was horrendous, and painful; but I wouldn’t change any of it even if I could.
This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J
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