Where we are

Imagine that your child has a unique kind of cancer, and the best way to save her is to treat her at home.  Sure, there are hospitals that offer the same treatment, but the cancer hides while the patients are there.  It comes back with amazing strength as soon as the patient walks through the doors of the facility, back out into the world.  The long-term success rate for permanently removing the cancer when relying on hospital treatment isn't exactly known.  Patients with this kind of cancer can live with it for a long time, but upwards of 20% die prematurely (up to 10% within the first 10 years of contracting the disease), and only 30-40% recover entirely.

Even with home treatment, the cancer could return at any time, and long-term success is only around 75% likely.  Again, there aren't many studies yet to confirm this.  As of now it is a 'hopeful' statistic.  The treatment - akin to painful radiation and chemotherapy - is to be administered 5-6 times PER DAY by you or your spouse only, and the administration continues until she is healthy.  How long?  It could be 3 months, or it could be a year.

Now imagine that this kind of cancer makes your child think you are actually trying to harm her every single time you administer treatment.  And the stronger she gets - in fact the closer the cancer gets to being eradicated - the more the child distrusts you and tries to avoid treatment.  You find her letting ever-increasing amounts of the cancer-fighting chemicals dribble onto the floor.  You discern she's found ways of shielding the cancer from radiation.  You find her conducting activities in secret that make the cancer grow.

You know she can't help it - it's the cancer itself that's making her do these things.  And yet, sometimes, you fight her, because she is a teenager and you can become overwhelmed with the need to correct disrespectful and/or deceitful behaviors.  You try to see the cancer and your daughter as separate entities, but it's not always easy.  And every time you slip, the cancer whispers to her, "See - I was right.  They don't trust you.  They do want to hurt you."  And even worse: "They don't love you.  No one could love you.  You are a TERRIBLE, WORTHLESS PIECE OF SHIT."  And she believes it.

Only when she gets dangerously weak and frightened does she realize what you had been really trying to do all along - love her, save her.  And then she'll let you start again.  But every time, her health is dramatically compromised.  The cancer may not succeed in what it wants to do each round - kill her -  but each time, her heart has been significantly weakened.  She hasn't had a menstrual cycle in a year and a half.  She's lost months and months that could have been spent doing happy teenager things and looking forward to the future, but instead she's been enmeshed in a cloak of debilitating self-hatred and crushing anxiety.

Every night you go to bed combing over the day, looking for ways to make tomorrow better for her.  You analyze every treatment session and resist the urge to give her just a little bit less because she cries that it hurts so badly.  You resist the urge to give her too much, hoping to get her to healthy sooner - because though too much won't hurt her physically, there's always the risk that she'll run away from home.  You make plans for activities that you hope will distract her, but are careful that they are not ones to encourage the cancer.

Meanwhile your child has trouble seeing the appeal of anything she formerly enjoyed, and expresses feelings of hopelessness regularly.  She distances herself from you and her siblings.  She has a therapist who helps her with relaxation techniques, but the cancer tells her she doesn't have time to try them.  Your child is 100% emotionally and physically exhausted, and sometimes?  Sometimes she tells you she just wants the cancer to win.

Imagine you're in your second home-based round of the battle for your child, and it's just reaching the predictable place where the cancer has hidden her from you.  You are aware that this could be one of many rounds, but that the only thing that matters is getting her next treatment administered without letting her cheat it, and without forcing her to run.  It's a game of inches each time, and you have to stay focused even though you want to take a break. You have to go on with the rest of your life and do your job and care for her siblings like nothing else is wrong.  You have to ignore the whispers in your mind that, even with all the effort you exert and all the love in your heart, she could die anyway.

This is where we are.

Reality check

The slowest train wreck in history finally happened, and she's back in a safe place for now.  With the breathing space this time allows (easy for me to say, I know, having been separated from the trauma for weeks already), I look around with weary eyes, and struggle to contain my angry reactions at the correlating factors in our world.

Recently, I informally polled a subset of my peers. "Look at me - I'm 42.  I exercise 5-6 days/week and eat healthfully whenever possible, but really focus on moderation more than anything.  I'm relatively thin, but still find myself focusing on my 'flaws' when I get out of the shower.  My belly, my arms.  When is it OK - at what age - for women to stop obsessing about their bodies?  When is it OK to just...relax?"  Granted, I live in a circle of fairly well-off people, so these are women who have leisure time, and like me they all place a high value on physical fitness.  It's almost like asking a chef 'when do you stop caring about food?'.

Still, I was saddened to hear advice on flax seed to combat belly fat, with it's plant version of hormones that trick the body out of reacting to decreased levels of estrogen.  I was disheartened at the laughing eye rolls, and exclamations of 'never!'.  But I wasn't terribly surprised.  After all, look at the messages on TV and in magazines.  This has all been said before, I know, but it's hard to break out of self-enforcing cultural messaging.

What was disturbing, to the point of shocking, was something that came after my poll.  One of the two Flax-Seed Women went on to talk about her concerns about her daughter's weight.  AFTER hearing about what is going on in my family.  In the exact same conversation, no less.  This woman talks about the girl's thighs being thick.  She says that she's set the girl up with her own personal trainer once a week.  She smiles at her own cleverness, swapping out healthy ingredients into her daughter's milkshakes at home. Her daughter is 14.  I hadn't seen her daughter for several months around school, so wondered if she'd been overtaken by a period of early teen flab (I remember gaining and losing weight over my teens for no apparent reason).  Obviously not much below morbid obesity would justify such a heavy-handed intervention by a parent - a mother - in my opinion.  At the school's closing ceremonies a few days later, my jaw dropped when I saw her - stunningly beautiful, and from where I was sitting, not even 5 pounds 'overweight'.  I was filled with fury on her behalf.  There are not even words to describe all the things wrong in the situation, swirling through my mind.

But worse. During a phone conversation yesterday I hear about a mom just outside my immediate family setting up an app on her and her daughter's phones that monitors caloric intake each day.  It has you input all you eat along with your exercise, and identify your target daily number of calories.  If you eat something high calorie, it tells you how much additional exercise you should do to offset it.  This sweet girl, who now is bonding with her mom by obsessing over daily calories, is 13.  ARE YOU FUCKING KIDDING ME?

I really, truly understand that mental illness is not caused by messages or activities like these, but... what in the name of God do these mothers - some of the smartest women I know - think they are teaching their girls with them?

Two months

Two months since my last post, and I am feeling terrible.  There have been moments of panic, moments of encouragement.  There has also been laughter, tears, fear and peace.  Today is a low point in the continuum because I truly feel robbed of all hope.  The direction of things is spiraling slowly downward and I have no control over the outcome.  I've extricated myself to a certain degree, but every time I attempt to help, I fail and make things worse.  I'm not even helping JBL, who has taken to sheltering me wherever possible.

Some look in from the outside and say, 'Things seem to be going well - she's still eating.'  But they don't know that she's backing towards the cliff again, yelling at us to let her jump.  No one seems to be doing what it takes to really help her (knowing our job is simply to administer the medicine, but that's less than 50% of the battle).  I don't know how much more I can take.

At a loss

I am simultaneously a shell of jagged, bleeding edges and a bottomless well of calmness and determination.  More of the former, but the latter when it's required.  This is so unbelievably hard, I honestly don't know how we're going to get to The Other Side.  But as I told her all weekend, there's no way around it.  We just have to go through it, together, and there is no failure allowed.  We can't bear to think of that option, even when she begs us to consider it.  God, please, please help us.

Privacy

I just deleted several recent posts.  Though it felt good to write them (necessary, in fact), it didn't feel good to leave them up.  I may continue to do this over the coming months - exercise some demons through writing, save the privacy of my loved ones by deleting.  I'll try to think of it as burning confessions over a camp fire rather than stifling emotions that need to be expressed.  It's hard to have healthy boundaries with such extreme circumstances - for me anyway.  But hopefully I will have some good things to write about soon.