Thank you, by the way, your comments were lovely and mean a lot to me. I won't lie: the experience was a little like opening up the wound and rubbing an entire container of salt in there, but I have no regrets if I can reach the ultimate goal, which is to help even one person. Therefore, in the case that one person was drawn to this site because of the post I did for Body Blogger Calendar, it seems wrong to leave the topic immediately. However, I think you may be disappointed in how very little I actually know about the disease that took my daughter. I mean, really know it at its core. If I had understood it better maybe I could have battled it better. But, I'm not really sure I ever had more than a cursory understanding of what makes it tick like a time bomb inside so many lovely people.
I have blogged about the complexity of this before. How intrusive and utter encompassing it is, for everyone in the household, not just the individual suffering directly with the disease. The Beast, as you know we called it, permeated every inch of our lives. Yet I really never completely understood how it took up permanent residence there. I mean, I'm a reasonably intelligent individual and know what the common literature about eating disorders say. The National Eating Disorders Association (NEDA) website approximates 10 million women and a million men suffer from anorexia or bulimia. I think most of us who are at least passingly familiar with the disease know that number is low, because for every individual actively in treatment and therefore encompassed in those statistics, there are probably multiple individuals who struggle to some degree with disordered eating, binge eating, compulsive exercising, poor body image, etc. I know some. I bet you do too. Some of them manage to go about life in a reasonably functional way. Kind of how we probably all know functional alcoholics. That doesn't mean they're not affected by behaviors that have somewhere along the line slid into the realm of unhealthy. So I see the mass literature, have read it and have seen examples of it with my own eyes. That's not really the problem.
Additionally, I can pinpoint "triggers" in our lives when my daughters were young that led to this particular disorder being what Kelsey reached for to try and take some control over her life. I've written about some of that over the past year, but a very quick, not all-encompassing run down is: disordered eating patterns in our home because I worked all the dang time, my general absence when my daughters needed me the most, both girls participating in sports that focused a lot of attention on body image, how long should I go on? Kelsey was a figure skater. I loved the sport, I still do, but I'm not ignorant to the danger of trying to stay small and slim like the top skaters. Yet, she was naturally drawn to it because of me I think. I was so proud when she wanted to skate. What I wasn't happy about was her cheerleading aspirations. That too is very image conscious of course. Because I was so opposed to it, it became her early form of rebellion and an dangerous one. Trying to keep up with girls who had been trained in classes and camps since they were little was, I knew, impossible. And girls that age can be so cruel to one another. For us, it began with that, but it was likely to have happened for all the other reasons I listed. I can look back and see all of these things and label them for what they were, but still I don't really know what the disease is.
I remain involved in the eating disorder community as a board member of Austin Foundation for Eating Disorders. I would, if asked, speak about our experiences as a family. At this point, I think I could get through a discourse about life with The Beast, although I'm not sure I'm ready to get pushy about getting out there with the tale. Maybe someday. Yet, I can never offer myself up as an expert, I don't think. Because I just don't get it.
I will always have these images of Kelsey, even in the rage of a heated argument with me, turning to look at herself in the mirror in the cabinet that held the Damn Bells, rubbing her stomach, which was concaved half the time, appraising herself even as she screamed about some thing or other. I'll remember her, barely strong enough to get up the stairs, her body literally beginning to grow a fine layer of fur know as lanugo, turning to me and asking, "Do I look like I've gained weight?" in this horrified tone, clearly afraid I might say yes. I don't understand what it was that she saw when she looked at herself. I don't understand how, after all those years of treatment and therapy, she couldn't wrestle The Beast down to the ground. I don't really get the love-hate relationship with it. I have suffered a great loss at its altar, but yet, I will always somehow be an outsider to what makes it tick. And that, I think, is my greatest failure. Who was it who originally coined the phrase, "Know Thine Enemy"? They were wise, whoever they were.
If I were to impart anything to parents struggling to help their daughters and sons, it would be that one thing above all others: know what it is you are dealing with. You'll never get it completely, you can't unless you've been there yourself, but never stop trying. Definitely know this: there can be no casual soldiers in this war.
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