I was invited to attend a meeting of a fledgling non-profit support group focusing on eating disorders called "AFED" (Austin Foundation for Eating Disorders). The meeting was held at an eating disorder treatment facility located on Bee Caves Road in southwest Austin. For those of you who know the town, it will come as no surprise to you that, as I looked around for the address, initially missing the chic little area set back in the woods from the street, I was passing and being passed by a plethora of luxury sedans. It was almost to the point where the couple of Toyotas and Hyundais I saw looked out of place. Probably the help on their way home, I thought to myself. I couldn't help but notice that most of the vehicles were dark in color; black or a charcoal grey. I smiled a little at that, as though they were trying to convey, "We know the economy is bad, so we'll choose a somber color for our big car to show how seriously we take it." At least my little Forester is the right color, so I felt only vaguely out of place. This is one of the areas where Big Money lives in Austin. Not that I protest to people having Big Amounts of Money. I would like to myself. But, it struck me how not unusual it is for a treatment center to be situated in a high dollar area of town. Kelsey spent two stints at a treatment center in an area of St. Louis called University City, which is a stately area full of historical homes and peaceful parks, large stone churches and synagogues. You can almost smell the old money in the air. There was a girl enrolled at the same time as Kelsey who had both a "summer" and a "winter" car, both something rather posh, although I've forgotten what - not that Kelsey didn't tell me a time or two, a chip forming on her shoulder. A lot of the girls I met while she was there came from affluent backgrounds, so it is not surprising that clinics open up where their clientele are likely to come from and are most comfortable. And, I believe when most people think of eating disorders, they think of the big, wealthy names they associate with it: the Olsen twin (was it Mary Kate or Ashley?) and Nicole Ritchie to name two prevalent names in my daughter's day.
But, I don't believe that is representative of the individuals who suffer from this disease at all. It is just representative of the individuals who can afford to get help. Take for instance the young woman who invited me to the meeting. This fledgling foundation is her baby, as near as I can tell. She is trying to get it started out of her own experiences when she had to raise donations in order to afford her treatment. As another example, there was the woman whom I met when Kelsey was at McCallum Place who had to leave there shortly after I met her when her insurance ran out. When I saw her, her complexion was nearly gray, she was wrapped in a blanket despite the spring air, her smile, weak as it was, revealed ruined teeth, her face lined already due to dehydration even though she was in her mid-twenties, and even under the blanket, it was clear her gray skin clung directly to bone. Bluntly, I knew I was looking at a woman at the bitter edge of hope. One look at her told you what you needed to know: without intensive residential treatment she would die. She did, less than a month after leaving the facility. Maybe they could not have helped her, but the insurance company, in my opinion, signed her death warrant the day they stopped coverage for residential treatment. She couldn't afford it on her own. Then there was the woman I met at the state capitol when we all gathered to support legislation, albeit with no success, for increased insurance coverage. As we sat and waited for a press conference we were supposed to lend support to, our job to look sincere and supportive, she told me the story of how she paid for six month's worth of treatment by using all her retirement and then working through her son's college fund. The featured speakers that day were a family who had exhausted their retirement to send their daughter to treatment. Within the year, we had joined that group as having exhausted everything we had worked for years to squirrel away. And we were all the lucky ones. We had something to exhaust. I often wonder what happens to those who simply don't have anything.
Bottom line is this: I think the perception is that this is a rich girl's disease. I won't discount even my own perception that there are some stressors on the social elite that cause them to be prone to an eating disorder as how their personal inner turmoil manifests itself. But, I think the public gets a skewed impression because the stories that make big news are about female celebrities, and the people they meet who are in recovery are often well-to-do. That's because they can afford to recover. And, once they do, they are often more vocal about what they experienced. Men and women of more modest means tend to get past it somehow and then have to hunker down to make a living. They have no time for fund raisers or awareness groups, they have bills to pay. That is, of course, if they survive it.
At the same time, I am not critical of how much it costs to treat the disease. That probably surprises some people, but I ran a business. My mind naturally clicked off the overhead as I toured McCallum Place for the first time. Think about it. Trained staff have to be present 24/7/365. And not just "trained", but nurses with a specific understanding of the mental mindset they are up against. The residents (remember, men suffer too) have to be fed healthy, well rounded meals, so add chef and nutritionist to the staff. They need appropriate physical activity, so add a trainer. Then you have to figure out something to do with them to keep them active and engaged, so add in the costs of transportation and activities. They have to be housed. And then there are the therapists. You can feed someone, house them, teach them yoga, but what good is it if you they don't figure out how to live in the world without their disease. And, last, but not least, is the accounting staff. The people who work with the insurance companies. And, let's just be real, these are businesses. They are in it to make a profit. I was in business for the same goal. I never resented that aspect of it. I think some facilities are a little more high brow and their profit margin correspondingly so, but those are the places Kelsey would have bumped into that Olsen twin whose name I can't recall. It's not where we sent her. I have no bone to pick with the per day cost of either facility Kelsey went to. What I have a problem with is us taking so long to act on her situation that residential treatment was the only viable option. I have a problem that there aren't ways for working class families to treat their loved ones without breaking the bank. I have a problem with big insurance.
I cried the other night when President Obama spoke about never having to turn to a loved one and say that you can't afford to treat them. Kelsey's last year was exactly that. We saw how bad she was. She knew how bad she was. She admitted it more than once. She asked for help. She yelled for help. But, after three previous attempts, we were tapped out. Tapped out as it pertains to the big dollars it takes to treat this tricky issue anyway.
I know it's not that simple. We called old contacts for favors, and they offered to help, but then she wouldn't follow up. As much as she hated it, she was so entrenched in her disease, she couldn't imagine life without it. So, she sabotaged what meager efforts we came up with. But, in the end, as I watched a Mercedes, then a Lexus, then a big, black shiny Suburban, I wondered what I could have done with the money it took to buy just one of those cars and sighed because, really, maybe not that much. I patted my trusty Subaru on the dash, glad to have her there with me, and found the meeting.
Monday, September 14, 2009
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