Living Ever After

Recently I laid bare the costs of treating an eating disorder and how that will remain with me and this family for the rest of our lives.  But, what if Kelsey had survived?  What would her life have looked like?  The reality is that the future likely held a lifetime of health issues, and I long ago came to the realization that she probably would not have made it to old age.  She would always have issues with bad teeth, probably serious osteoporosis, potentially liver issues, stomach problems, a weakened heart and immune system.  I remember the moment when it hit me that I would most probably out live her.  But I thought I was talking decades into the future, not at barely 23.  I thought long and hard about this post, because I didn't want, on the one hand, to leave someone struggling with an eating disorder with the wrong thought that there is no hope in recovery.  On the other hand, I think for parents like I once was, it's important to know that a disease like this one is not to be trifled with.  Because it can have long term consequences.  In other words, if you're counting the costs and thinking that it might be best just to ride out the storm, then you should know that the storm for your child will never be fully over.  Our jobs are to give our offspring a chance at a happy, healthy life, isn't it?  Well, then I thought it was worth taking the chance on the post.

Even discounting Kelsey's situation because it's all speculation, Marissa, who dealt with her own eating disorder somewhat in the shadow of her sister, is still dealing with its effects many years later.  What she went through before may have no direct correlation with current her health issues, but what you realize is that we're all sensitive in ways we would not have been under better circumstances.  There has been a wicked sense of deja vu recently in the way I see Marissa treated by health care professionals who are aware of her medical history, but not trained in how to deal with it.  So, I've witnessed probably well-meaning individuals say some horrible things and act in horrible ways and have no clue they are doing it.  And I realized that just because someone is recovered does not mean that the same triggers that caused the original illness do not still exist for them.  One of the things that always scared Kelsey was that she would go to a doctor and they would tell her there was nothing wrong with her.  And, as sick as she was, that was unfortunately the case.  Or at least how she saw it.  What in fact they were saying is, "you know what is wrong with you and what you need to do about it."  That's not what she heard.  She felt dismissed, and it would crush her.  So this past week I took a day off work to go with Marissa to a doctor's appointment.  Her father went too.  We were concerned because the doctor had told her a problem she is having, alarming in its own right, was likely related to her past eating disorder.  That was hard news for a mother to hear, so I wanted to be with her when she had more tests done.  Turns out, there were no tests because her symptoms had abated slightly.  In fairness to her doctor, you would imagine he thought she'd be relieved, but she wasn't.  She's scared.  He let an evil genie out of a bottle when he evoked the image of her eating disorder, and then he seemed dismissive and as if he didn't care.  Truth is, he may not.  Not really.  She's one of many he saw that day.  His job is to treat symptoms, and he judged her just by that.  She's a commodity.  Not much more.  What he didn't take into account is how ED is a disease that is a head game as well as a physical one.  Marissa felt dismissed and was crushed.  And what I realized is that it wouldn't take that much of a push to make her go back to feeling as though food is an enemy.

The obvious answer, it seemed to me, is to find a doctor who is trained in eating disorders, if only because they would understand the complexities of how someone who is in recovery thinks.  I haven't found such a person in the city yet.  And that seems badly familiar too.  That feeling of being alone and with no where to turn to get help.  If we'd stayed in Austin, I would have had a network to turn to, but here, the community surrounding eating disorders seems either non-existent or very small and quiet.  Looking at a network of care providers on the Internet, all I could find are therapists.  No one trained to deal with the physical aspect of the disease.  Does everyone here really think it's just all in people's heads?  I hope not.  But, I have no evidence to the contrary.

Of course my own trigger points come to the fore.  The anger and frustration that I immediately feel when trying to battle people's insensitivity and ignorance is notable.  I was just like that once - insensitive and ignorant of how complex a situation this is, so you'd think I'd be empathetic, but it's my kid we're talking about, so some of that wears away.  But, even under better circumstances, there are things that just make me cringe.  Things people say about weight often bother me, when I doubt I would have even noticed otherwise.  Jokes about eating disorders?  Don't even try it.  Bottom line is that what I have to come to realize is that we'll never be the same people we were before ED came into our lives.  We're tied to it forever, all of us.

The challenge is make sure it doesn't keep us tied up.