Saturday, September 29, 2012

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.

Thursday, September 20, 2012


Eating disorders are gaining more attention it seems.  As a parent of a bulimic ten years ago and later an anorexic, I felt like I lived on an island.  A really scary, lonely island.  No one wanted to talk about it.  No one wanted to talk to you.  I had never heard of NEDA or any other organization or support system nationally or locally.  Now that seems to be changing.  Which is great!  And there seems to be more attention and understanding about the disease, and the men and women who have it as well.  But, while there are exceptions, there still doesn't seem to be a lot of focus on what "after" looks like.  One would hope that I mean recovery.  Of course, in my case, that's not what I mean for one of my daughters.  And, at the heart of my little recent setback with grief recovery, "after" is what raised its head and said hello.  In a way, our grief and loss kept us from focusing on that part of it.  The fact that there is a real cost to this disease that lingers long, long after the actual disease itself has left the building.  I think this is probably true for any family who has dealt with a major illness.  But, this is my experience, so it's the only one I can talk about.  And I mean that both physically and financially.  The financial stuff first...

I am not sure if my estranged sister-in-law still reads this blog, I assume she doesn't, but this would be the one I hope she would read.  I know it's hard for her to understand what it cost, emotionally and fiscally, to get through the last ten years.  How could she?  It's time that she knew and then maybe she can know that I am not stingy out of pettiness at least.  Probably everyone should read it, maybe in particular insurance providers, and I wouldn't mind if Mitt Romney took a peek at how the other half lives.  But, here's the thing, without going into details because they are boring, a couple of semi-related things happened a few weeks back that reminded me exactly where I stand in the grand scheme of things economically.  Let's put it this way, after meeting with my financial advisor, I realized that it's a good thing I've gotten used to having a postage stamp sized kitchen, because this is as good as it's going to get.  And I've got some serious work to do in the next ten years if I'm going to be set up to be able to have a decent retirement for both Greg and myself.

Don't get me wrong:  we're okay.  We live a nice life.  I have a membership to the zoo, I go to the occasional football game, baseball game and - God willing - hockey game.  But, I think I put blinders on to a certain extent once the house in Texas sold and that meeting brought me back to the reality that I needed to be living in.  And there was some shock involved when I had to realize that, after years of working at a really brutal pace, this is what I have to show for it.  That sounds so greedy.  Maybe it is.  But, the reality is that I'm lucky I have any resources for retirement at all.  The costs we incurred to try and help our daughters will resonant for the rest of our lives.  I know we're not alone.

I think there is a perception among people who have never experienced ED that it is a rich person's disease.  That's not true, but I did observe that the individuals we came into contact with were well off because they were the families who could afford treatment.  Kelsey was all too aware that she was from more modest means than many of her co-residents when she was in treatment, and we were making more money than 75% of Americans!  The reality is that it is a complicated and expensive disease to treat and the recidivism rate is steep.  Here are just a few of our facts:
  • At the time our daughters were ill, average residential treatment cost about $1,000 a day.  Many insurance companies would not cover any of it, others would only cover a portion.  Patients pay up front and then seek insurance reimbursement.  Kelsey went to treatment three different times for a total of five months, or 150 days.  Marissa also had a residential stay for her own reasons.
  • Residential treatment often means leaving your geographic area, at least if you want decent care.  That involves travel costs:  airfare, hotels, maybe rental cars, and time away from work.
  • Kelsey began therapy at 14, so for nine years she visited at least one therapist once a week.  Later Marissa had her own and we went to family therapy.  In all that time, one counselor did take insurance, none of the rest did.  Sessions cost on average about $100 per, but we would not have made it through as long as we did without it.  That component was critical.
  • Nutritionists.  Both girls went to them.  Kelsey hated it and refused to go long-term, so that was not a major expense in her case.  Marissa stuck with it.  $100/session on average.  Maybe you can find one who takes insurance, but we didn't.
  • While not all patients see a psychiatrist, we had one as part of the treatment team - and that's what it is, a whole team of people.  You put together a group of professionals who all have to work together to try and help.  Many shrinks do take insurance, but ours did not.  We chose him though because he was good.  Many are not so good, or rather, many are not right for the patient.  Probably more than any other medical discipline, you have to have a level of comfort with the individual prescribing you psychotropics and messing with your head.
  • Medical doctors.  You'll probably have more than one.  Kelsey's primary care provider was a specialist in eating disorders.  We were lucky that he lives in Austin.  He wasn't successful with Kelsey, but at least he understood the situation and didn't make it worse.  But, he didn't take insurance and his services were specialized and therefore not cheap.  He had an initial intake fee that was nearly $700 at the time and the per visit cost was, as I recall, $160 a visit.
  • Medications.  Those are covered by insurance in most cases, but the co-pays add up.
  • Rent and other living expenses.  We were told Kelsey should not come home when she was discharged the last time from residential treatment.  This is not atypical for individuals recovering from issues like ED or addiction:  you don't bring the individual back to the place where they practiced the behavior.  Talk about a trigger.  Obviously that is not recoverable by insurance.
  • For three years running, we spent out of pocket the same or more than my gross income after insurance paid what we would coax out of them for medical expenses.  That is not taking into account any of the other ancillary expenses.
I did have to borrow from Mother and still owed her when she died.  We took out a second mortgage on the house and went through almost all our retirement and all of Kelsey's college fund.  We never filed for bankruptcy, but I thought about it.  A lot.  I kept current on our bills, something that I'm highly proud of, but I constantly had to worry about money on top of everything else and sometimes there just wasn't enough.  Again, we were making more than 75% of Americans, and I was digging through the change jar for grocery money.  So, sitting here today, in my little house with its little kitchen, I'm probably pretty damn lucky indeed that I have what I have.  But, to the end of my days, ED will impact all of us.  I will never have that time when I don't have to worry about money, at least a little.  Do I regret spending it?  No, I was trying to save my children.  Would I spend it again?  Of course.  But, this is my life after ED.  Humbled and modest.

At the end of the day, when my daughter was taking her final slide, I had nothing left to help her.  That's the only part I regret.  The part I really struggle to get past and forgive myself for.  I just didn't have enough money left.  It's too late for Kelsey, so I worry now about those people whose parents don't make more than 75% of the rest of us.  What do they do?  Because while there may be more awareness now, it's no less complicated, and it's no less expensive.

Thursday, September 13, 2012

On Thin Ice

One of the things that occurred to me is that I was sliding down a slippery slope back into self-pity and grief because the single most important thing that got me through the last couple of years is in danger of being taken away.  It's not my family, it's not my work, it's not even my beloved dogs - although collectively they are older than I am and I know I'm on borrowed time before we lose another.  All those things are very important to me, but they are reasons I have not to wallow in misery, but not necessarily the way I manage not to do it (with a noted exception that I'll come to).  No, it's hockey.  I really, really love hockey.  For reasons I've talked about before.  It's better than football for taking your mind off your troubles for a few reasons, but one I'm oh so painfully aware of at the moment:  when the Steelers lose, you've got a whole week to stew over that fact, and there aren't many chances to lose before it impacts your season.  If the Pens lose, unless it's the playoffs, I pout for a bit, then move on to the next game in a couple of days.  The pace is so fast and furious that there is no time for worrying too much over the past.  At least not here, where we can put a team with Cup potential on the ice.  And a loss, even a string of them, won't derail your team completely.  All the grief counseling in the world couldn't do for me what the Penguins ended up doing.  Well, it is likely that the season is going to be delayed, and could potentially be shortened or not happen at all (hey, it's happened before) because of an impasse on revenue sharing.  The deadline is looming and there seems to be little real movement.  This will be the third lockout in 17 years.  And they wonder why they continue to be, as my husband says, a "second tier" sport.  I'm angry.  I'm freaked.  What will I do?!  And that's when it hit me - I'm entirely dependent upon something that I can't control and therefore it has control over me that it shouldn't.

I think I've probably written in the past that you should use whatever tools you can find in the toolbox to get you through the dark times - within reason.  Drugs and alcohol are not the answer, because that all catches up with you and just makes it far worse.  But, I'm sure - because it's what I did - I encouraged readers to spend time in pursuits that diverted their attention and absorbed them in happier things.  I am not particularly flip-flopping on that.  I think in the short term you have to do whatever it takes to get through the day and then the next one and the one after that.  At some point, I realize, faced with a lockout that everyone else seems to be taking in stride (because they've been through it before), that real success in grief recovery is to come to some sort of inner peace.  Or at least inner acceptance.  I've always known that, I think.  But, when you're faced with your first real test, you are tested in more ways than one, and one of the things you have to find out about yourself is how far you've come toward learning what it takes to be strong from within, not just from without.  In short, you have to do the work yourself, Sidney Crosby can't do it for you.

Starting from there, trying to decide how to get to that point, there a few things I will tell you so far:

  • The dips, which are inevitable, are not as deep as the original loss was.  It hurts, sure, but not that white hot fire you first had.  So it is easier to overcome the down times.  My guess:  it will get easier and easier with time.  I doubt the little pings will ever go away because I mean, think about it, you're talking about the loss of someone who grew inside you.  How can that ever be made completely right, right?
  • You have to learn what your true support systems are.  Hint: it's not hockey.  I understand on one level now why so many people turn to religion in the face of great loss.  Heaven doesn't have lockouts.  (On the other hand, I also get why some people turn their back on God - what loving God could take a child from you?)  Maybe it's a grief support group.  Maybe it's your friends.  For me, it's Cheyenne, my alpha dog.  She is sensitive and accepting of my moods, and wants to help.  I don't have to worry about burdening her with my troubles in the face of her own - as long as she gets to sniff out giant groundhogs every night in the local cemetery, she is there for me.  And even when I have to skip a night or two walking her, she still loves me and listens to me when I'm sad.  Can't buy that kind of support.
  • Be patient with yourself.  I thought the road through to recovery was a straight shot.  Turns out it's not.  But it's still a road that can be traveled.  You can do it.  So can I.  I'm pretty sure.
All in all, I can tell you that I'm sort of tired and drained, but I'm still plugging along.  I'm bouncing - well, maybe not exactly bouncing - but coming back from the last few weeks of tough times.  If you're reading this because you've experienced the same thing, I can tell you to hang tough.   You won't believe me right at this moment, but you'll just have to trust that it gets better again.  Just don't depend on hockey to ride to the rescue. 

Thursday, September 6, 2012

China Plates

"Getting over it so soon?  But the words are ambiguous.  To say the patient is getting over it after an operation for appendicitis is one thing; after he's had his leg off it is quite another.  After that operation  either the wounded stump heals or the man dies.  If it heals, the fierce, continuous pain will stop.  Presently he'll get back his strength and be able to stump about on his wooden leg.  He has 'got over it.'  But he will probably have recurrent pains in the stump all his life, and perhaps pretty bad ones; and he will always be a one-legged man.  There will be hardly any moment when he forgets it."
- C. S. Lewis
A Grief Observed

Trigger.  That's a word I haven't used in a long time.  I haven't really had to, but suddenly it seems to have made a reappearance in my life.   Starting about three weeks ago, it seems like I can barely get through a day without something triggering me and reminding me of Kelsey and what we lost.  The worst of it is that it is not always bad things, although sometimes that is the case.  Sometimes it is a situation that reminds me of the bad old days when I was struggling to make ends meet despite bringing in four times the median income.  (More on that in a later post, because dealing with the long-term impact on families that treating the disease creates deserves it's own post.)  Sometimes it is seeing someone in a crowd who is clearly sick with ED.  But, sometimes it is something that should be a happy moment.  A contact from an old friend who has been out of touch since before Kelsey died.  A speech by Michelle Obama, who styled herself Mom-in-Chief.  Those are happy things that nonetheless leave me drained because they cause the tape to rewind back to a different lifetime, a different me.  Or, seeing friends of Kelsey's become moms.  That's a tough one.  Beautiful and wonderful on the one hand.  Achingly painful on another.

To illustrate with just one example:  I watched a documentary about the Obama administration on MSNBC before the keynote speeches on Tuesday and they naturally showed snippets from the inauguration.  I was still working at my old position when that took place - it was a few weeks before I would be laid off - so I brought my portable television in and let the staff of my little department watch it.  History in the making; they deserved to be able to pause and be a part of it.  My oldest daughter was alive then.  She got to see the first African American take office.  She put a cartoon of Martin Luther King's imagined reaction on our refrigerator around then that stayed there until I began packing.  My mother, of course, was alive to see it too, although by then she was in the nursing home, and I was doing that delicate dance to make sure I kept the channels away from news because her reaction was very different than Kelsey's - I watched a lot of NCIS that year.  Now neither of them will be around to see if he can win a second term.  Can it really only have been four years ago?  Less than four years ago actually.  And, of course, I watch the Obamas interact with their two beautiful, beautiful daughters who look so happy and whole and think, "Wow, they are the most powerful and busy people in the free world and they still manage to be good parents.  If they can do it, then I must truly have sucked."  Self-pity?  Sure.  But, it's hard not to go down that road.

What you realize is that you're a lot like a plate who is broken straight down the middle.  You can be glued back together and be functional, but you have to know that you're never quite the same.  There will be that fault line always that is a little weaker than before and, when overloaded, is subject to cracking again.  And once the fissure begins to give way, it's hard to stop it from snapping all the way. Things that individually applied a month or so ago would catch my notice, but not send me into a tailspin, now threaten to undo me.  Take the not one, but two clearly anorexic girls at the Steelers 5K on Sunday.  Both Marissa and I noticed them.  I had seen a woman in similar condition in my own neighborhood power walking when Cheyenne and I were out less-than-power-walking.  Her legs were thin, but muscle bound.  Her arms were the tell.  They were like twigs, no muscle, no fat, skin stretched tautly over bone.  Three such disturbing appearances inside of a week would always rattle me a little I think, but I was already on shaky ground, so those women seemed to be spectres sent to haunt me and I was highly agitated by them.  Things just keep piling onto the plate.

You know it's going to happen, the dips on the scale, the rolls down the mountain, whatever cheesy metaphor you want to employ.  Of course, knowing you'll have bad days and then actually having them are different.  But, when faced with them, then you're faced with them and have to deal with them.  That's what I'm dealing with currently.  The question therefore is what to do about it?  I've been thinking about that actually.  I've got some theories that I'll test over the weekend.  Stay tuned for the results.

"don't it feel like sunshine afterall
the world we love forever, gone
we're only just as happy
as everyone else seems to think we are"
- Jimmy Eat World
The World You Love