A few of you know me as the young kid who occasionally complains complains complains about things here, like not being able to get health care for my wife when her kidneys started failing last April (we got help from Intermountain Health Care's nonprofit assistance program, then Utah Medicade, and both have really saved us, and a thousand thanks to all of you for your emotional support which was helpful in indescribable ways).
If you look at my recent diaries you'll see I've been complaining about other things. I do genuinely feel bad for making such a helpful community the platform for my complaining. And I feel sorry that I've not contributed more directly to the positive dialogues on here. This diary is not positive, but it is honest, and rather important.
My wife is really, really close to dying.
And what it feels like in my stomach, being born and raised American through and through, is that we just don't deserve any better. That's what it feels like. I can tell myself that we deserve to have health care regardless of how much money we have, but I feel like I'm lying, because of how being told the same thing again and again starts to make it feel true, and being shown it over and over makes it feel true, and being told it by a supermajority of the political party you naively thought was yours makes it feel a little more true than you ever before thought it was.
To come clean briefly: There are complications with my 23 year old wife that have not been admitted to. This is according to her wishes up till now, and this post is also with her permission (even her encouragement).
We now understand why my wife's kidneys are failing, and we suspected it from the beginning. We were told by a couple great doctors that they didn't think our suspected cause was the likely cause, given how young she is, or perhaps their lack of understanding of the severity of her case, so, for months, we went on a roller coaster ride thinking there was perhaps some other cause, perhaps hoping there was some other cause, some more easily fixable cause, and finally, we ended where we'd originally feared we'd end up.
My wife suffers from anorexia. She's now 23, a shade over five foot four, and last week, 66 pounds. When we married in October of 2009, she was 98, which is ten pounds less than the most she's ever weighed in her life. When her kidneys started going 9 months ago she was perhaps 90.
Aside from my wife not previously wanting me to write about this, there was the fact that my anonymity was blown here in a rather absurd way due to a mistake I made, and it occurred in such a way that I've not felt like posting here at all. But this is what you do when you are in a corner, and this is the first time I've actually known what it is to be in a corner. It feels like having the flu. Like being so nauseous your legs quiver. But just the idea of sharing this with kos-friends makes me feel a little better already. And, given the fact that I am not anonymous, and we both know that, my wife and I, and further given that I am not the sort of person who desires to stay anonymous, as a person committed to nonfiction, to telling stories that are true, this is what we look like three months ago, when she was getting by in between visits to the ICU for re-feeding and potassium IVs:
I'm not sure if the photos are showing up because they aren't showing up in preview. Oh well. Here's a link. I'll say that the tux is a rental. We were flown to NYC in October for the Norman Mailer Writer's Colony award gala because I was extraordinarily lucky and won the Norman Mailer College Nonfiction Writing Award. We paid off debt and bought a vacuum with the award money, and the vacuum works brilliantly. And the writer's colony provides me with the opportunity of a lifetime -- I'll be in Provincetown for a month-long fellowship this summer for one thing, and I've formed relationships with some great writers and folks in the publishing world. There have been such things to celebrate, and my best friend, the one who married me (really really begrudgingly because she hates the institution of marriage), has been sick this whole time, while trying to do her best to cheer us both on. It's always been us -- I hardly knew how to write when I met her. And the first good thing I ever wrote was about her.
Here's another-- her favorite place -- twenty minutes from our apartment in Utah:
And the day we got married:
That was apparently all introduction. These are big topics.
What to say of Anorexia? It feels to me as if it is considered a "woman's disease" -- by which I don't mean it only occurs within women, but rather, that it is treated by the American public as something caused by vanity, or selfishness, or a desire to be thin. That it is the woman's fault. Like anxiety and depression and other mental illness, their seems to be a layered reaction in the general public: 1) it's not your fault, and 2) it's your fault. Perhaps I'm being too rash. But one does get the sense, over time, from the general public and the media, that eating disorders are essentially caused by a woman's inability to ____ or a woman's problem with ____ or the female tendency to ____, and it almost, almost feels as if this adds up to blaming the girl. All this of course means men with eating disorders are sometimes viewed not only as vain or selfish or weird, but as less-than-man. As woman.
Woman's disease is not a particular favorite of the insurance corporations, I think. And it's definitely not covered by Utah Medicade, unfortunately, but they have been paying for all the electrolyte IVs. Now, I've been of the opinion, foolishly or otherwise, that to force my wife into some treatment plan against her will, through emotional blackmail or otherwise, would be immoral and counterproductive. I am of the opinion that some people will choose to die rather than choose to suffer through what might be a hellish recovery, and that perhaps that ought to be their right. But recently my wife has finally expressed interest in getting better. She is of course of two minds on the subject. She is terrified, terrified of gaining weight. Weight gain feels like the end of the world, in her terms. She is also desirous to live.
Anorexia is not a very hopeful diagnosis. It has a high mortality rate, and at least one peer reviewed article I recently read about recovery found that about 50% of attendees of inpatient residential treatment clinics recover. Also, the dozen or so clinics I've spoken with over the past week and half have said the average time for Anorexics in their clinic is in the realm of 4.5 months. The one she did an intake with told her they imagined she'd be in for 6 months to a year, because of the severity of the underlying issues associated with her disease. This is just to say that I suspect that she is not likely to fall on the recovering end of that 50%. I suspect that my wife, who started thinking about restricting food intake at age 6 by her account, is a somewhat serious case.
I don't think it's so much that Anorexia is difficult to overcome -- at least, I don't think that's exactly the correct way of thinking of it. I think it might be more like, if someone is starving herself to death, she probably has some pretty heavy duty shit underlying that. I know my best friend does.
So, even if we did have the money, or even if she was able to qualify for insurance, and even if that insurance corporation was willing to pay, or even if medicade did pay for treatment, her recovery is, at best, a coin flip.
There I go thinking like an American. I should work for an insurance corporation.
It's amazing. I actually feel bad calling all these treatment clinics. The women (all of them have been women) I've spoken to have been so nice and kind and concerned, and when I ask them to tell me how much it costs, because that's what I need to know, they sound like they want to change the subject. They almost sound like they are personally responsible for the cost, which isn't true. I sort of imagine them wondering if my wife has died yet a month from now, and feeling sad about it. Especially the ones who called back asking how my attempt at getting medicade to do a "single case agreement" went. It didn't went nowhere. Neither did her physician's attempt at the same with medicade.
So, here's the situation.
The clinics actually won't/can't take her right now. It would be "unethical" given her state. It's too dangerous for them to take her given her instability. She needs to be in an ICU for several weeks, under close monitoring as she begins re-feeding, before they can take her. And she knows this. But she always checks herself out of the ICU because she hates being there and she feels like the world is ending when she is gaining weight, and when her potassium gets up to normal (last time it was at 1.4 when she went in), she leaves. She's stubborn as hell.
But she did sigh a couple days ago and say, "I'm going to have to be in the ICU for weeks and weeks." Which suggested to me that she's realizing the reality, and that she wants to live.
So that's the first needle to thread. That one is paid for by medicade.
Then there is this needle to thread:
Center For Change, 2 hours away: 92 grand for the average 4.5 month stay.
Avalon hills, really close: 1,600/ day, or $995/day for uninsured
Eating Recovery Center, Denver: 2,100 a day for first level, then 1500 a day in residential
Meritcare, Fargo North Dakota: About the same as Eating Recovery Center, minus a good 25% or so for non-insurance payers
Laurette in Oklahoma: 35-40 grand a month
Rosemont or something: 45 grand a month
Casa Palmera: 1,300 per day
Needle to thread: helping her with her fear of recovering.
needle to thread: getting her on the right side of that 50%.
Before any of you try any funny stuff, know that the email address associated with this account is out of order, something I just did before posting this so you can't paypal me money like some of you did last year. I promise I would happily accept 25 $ from you if we needed it. But we don't need it. We needed it before. Thank you.
What we do need, is, I guess, well, an idea. I'm pretty sure there aren't any ideas. I'm pretty sure I've already used up most of the ideas. But anyway. I think I also just needed to tell you this. I felt guilty because I hadn't resolved the tension and conflict caused by discussing our difficulty in getting medical care for my wife last year. And I hope you aren't upset that I didn't tell you earlier. A year ago -- one year ago, I thought my wife's eating disorder would catch up to her when she was fifty. I couldn't have imagined this.
And maybe I just kind of hope you can help me get the insurance corporation guy's voice out of my head. Because I swear to god, he keeps repeating over and over: She's a bad investment. And that makes me wish I'd not been born in this country.
P.S. there is one thing I meant to mention and didn't. It is very interesting. My wife is diagnosed with Asperger's syndrome. Some things I've been reading have cited figures as high as 18-23% of people with eating disorders being diagnosible for autistic spectrum disorders. Interesting.