Fight Like Hell

This morning, as I reflected on how my son refused to finish his breakfast because his game was more important than his food so I simply shut down his device until his breakfast was consumed.  And he screamed, and yelled, and told me all about how mean of a mom I was and how I was going to make him lose all progress he had made in his game and how it would be all my fault.  And my only response was to shrug my shoulders and reply how food was more important and if he lost all progress then it was his fault for choosing his game over his food.

And as memes and hashtags rolled through my mind, hashtags such as #cleanyourplate #meanmomandilikeit #eatyourfood #allyourfood #andlickitclean stood out and I had the idea to google some memes to go with it.  What I came across was striking, and made me realize just how much my view of food has changed over these last few years.

Most of them had to do with the perception that if you overeat, you will become fat.  A few even characterized a grandmother spoon feeding an adult even though she was full and couldn't clean her plate.  Cleaning your plate seems to have become akin to becoming obese.  And there is no denying that overeating can lead to obesity, but calories have their place in our diets.  And a very important one for our children.

Another that I came across, showing a rabbit surrounded by carrots with the directive to clean your plate, at first caused me to chuckle.  But then I had another realization.

To my oldest child, every plate of food is as overwhelming as this meme.  Regardless of the food placed on it, to her, that plate is overwhelming.

I don't know that this is true for all ARFID sufferers, as I feel she leans much more heavily towards full avoidance and restriction of all foods, not just certain textures or classes of foods, and her disorder leans more towards anorexia than just simple fear of getting sick.  Which explains why the traditional anorexia therapy has been successful for her, because it's not the type of food that she's afraid of but all food in general.

I see many comments and themes thrown around social media about how you can't force a kid to eat.  That kids will eat as much as they want, and some days more than others.  And that if a kid doesn't eat what is served, don't substitute and serve it again.  That if they are hungry, they will eat it.

But what if they literally are not hungry?  What if that instinctive drive misfired, and their brain told them that they actually are not hungry?  I still struggle with a feeling of judgement over the fact that yes, my children are required to eat every bite they are served.  That they do not get the choice of what, when or how much to eat.  And that yes, you can actually coerce a child into eating by making the alternative to not eating more painful than the eating.  That the fact that these tactics are what I have to use in order to ensure my child lives and grows.  That I have shed many tears as I hugged my child who is screaming at me that I'm killing her, hurting her and why do I want her to die when she is presented with food.  Who has hit, kicked, bit.  That I still avoid social events including food because no one wants to see that ugly.  That I have stood there holding back tears while I swore to myself that as long as I was living, ED will not have my daughter.

Scrolling through my Facebook profile pictures, I came across this one from a few years ago.  It so accurately describes where we are now.

I have had to fight like hell, and fighting like hell has made me who I am.

I didn't want to be strong.  I just wanted to be.  But I will embrace the suck and just as prematurity found out, I will fight like hell and ED has picked the wrong girl to attack.

Remove the stigma

This article that I shared before has been running circles in my head lately.

Even 10 years later, even as she has fought eating disorders and anxiety and has come back to me and thrived. And is no longer in danger of hospitalization and death, I still find her birthday, and the days leading up to it, difficult.

And not difficult like they were in the first few years, where I would randomly cry at nothing and had no idea why I was. Where I was agitated and annoyed at everything and just wanted to climb into a dark hole where no one could find me. Where flashbacks would take over and at times I would find myself unsure of what year I was in and what was really my current reality.

The flashbacks and tears are gone. I can read my blogs from those days where before I couldn't even look at them. I can look back and see the good and face the ugly. But I can't escape the unrelenting anxiety that these days leading up to her birthday bring. And I'm tired of it. I truly am. Even knowing of it, it took me a while to recognize my current physical symptoms and irritation as that ever-present anxiety overtaking my mind, and even knowing that is what it is, am powerless to move myself out of it.

I feel like these words from the author of this article sum up 100% what I am feeling and what life is like after experiencing a more complex trauma - "For someone dealing with complex trauma, the anxiety they feel does not come from some mysterious unknown source or obsessing about what could happen. For many, the anxiety they feel is not rational. General anxiety can often be calmed with grounding techniques and reminders of what is real and true. Mindfulness techniques can help. Even when they feel disconnected, anxious people can often acknowledge they are loved and supported by others.

For those who have experienced trauma, anxiety comes from an automatic physiological response to what has actually, already happened. The brain and body have already lived through “worst case scenario” situations, know what it feels like and are hell-bent on never going back there again. The fight/flight/ freeze response goes into overdrive. It’s like living with a fire alarm that goes off at random intervals 24 hours a day. It is extremely difficult for the rational brain to be convinced “that won’t happen,” because it already knows that it has happened, and it was horrific.

Those living with generalized anxiety often live in fear of the future. Those with complex trauma fear the future because of the past."

Part of the complication comes from the fact that the moment I finally let go of the fear that the other shoe, that I kept waiting to drop, wasn't going to...it actually did. And so fiercely and profoundly that I was again in that place of fighting for my child's LIFE. And I still do fear for her life. I know the complexities of the disorders she is dealing with and the risks to her mental health as she grows. I know some of these habits she is developing now to deal with her anxiety can turn into more harmful ones in the future. Telling myself that those chances are slim to none doesn't help, because honestly, I have been on the receiving end of those "slim to none" chances several times with this child. Again, the inability of the brain of a person who has experienced complex trauma to be convinced that it "won't happen" because it already knows it HAS happened.

I don't put this out there for justification or pity me plea's. I swore from the moment that pregnancy turned from ok to not ok that if I did anything out of this situation, I would work to give others hope that it could be ok - and normalize the very real feelings they had throughout this traumatic process.

This is real. This is life after a trauma. I do not cause this, nor can I control it but I fight it day in and day out. And if there are ever times I disengage, it's not because I'm angry at you or arrogant or any other negative emotion, it is simply because I need to reset and remove myself from the sensory overload that is life. I will reengage. I don't expect people to understand it who haven't lived it. I just hope to make others aware. #removethestigma surrounding mental illness.

The reality of mental illness

This morning, I came upon a comment in a community of ARFID sufferers and carers that got me thinking.

The poster was frustrated with his/her parents inability to just "accept" and "live with" their level of pickiness and indicated the relationship made them even more unwilling and unable to eat.

I know this individual looked at this as a parent unable to accept them for who they were or how they were, but the only thing I could think was - isn't it the parents job to help their child overcome their challenges?  The way the commenter presented the issue was he/she was unwilling to change.  They liked who they were.  They had no desire to change how they were.  They didn't see a problem with who they were.

I get that.  I 100% get that and as a parent I do accept that my child sees food and the world differently.  But I also see how the way she views food will present her with difficulties when she enters the adult world, if she would even make it there if I enabled her to continue in her disordered way of thinking.

Here's the thing.  ARFID is an eating disorder that is a part of a bigger mental health issue.

I strongly feel that if I were to enable her to continue her eating patterns, it would be doing her a disservice.  I would be failing her if I enabled and encouraged her to eat how she wants.  One example that came to mind was that of depression.

I can speak to depression and anxiety from a very authentic place.  I have struggled since a teen with depression and since prematurity entered in, I have added post-traumatic stress disorder and further anxiety and depression.  My post partum depression never left.  Add to that the ARFID diagnosis and trying to care for a child who has absolutely NO DESIRE to eat and will put up any wall she can to avoid the simple act of bringing a fork from her plate to her mouth and I was up the creek without a paddle.

Every morning that alarm would go off and I wanted to cry.  Because now I had to get out of bed.  But I didn't want to get out of bed.  I wanted to stay right where I was, enveloped in the comforting warmth of the disillusion that I could just stay asleep and not have to deal with my day.

Every day, my biggest accomplishment and challenge was simply getting out of bed.

What if I didn't?  What if I chose to stay in bed?  What would happen?  Children would not get fed, I would not get fed.  Bills would not get paid.  Life would simply stop in a very real and eternal way.  But I would be happy and content wasting away in my bubble of unawareness.

Is that any way to live?

No.

The very reality that life would cease to exist if I just "accepted" my mental illness as a part of me and gave into it should be answer enough.

Neither am I saying that I (or she, or this poster) is "less than" for struggling with mental illness.  No, the very opposite.  They should be loved, and encouraged, and guided to find the tools to overcome these challenges.  By pushing one to not accept their status quo, the hand that they've been given, aren't you actually giving them a chance to overcome?

So, yes, I push her.  I push her beyond her boundaries.  I fight her day in and day out.  I am working to give her the tools she needs to eat even when she doesn't feel like it.  Or want to.  Or in an uncomfortable situation.  In the same way that I can't allow myself to stay in my bed, she can't allow herself to say I don't want to eat today.

Staying in bed is not an option.  Not eating is not an option.

The reality is that mental illness is hard.  It's debilitating.  It's confusing.  It's not a straight line from a to z.  It's painful.

But recovery is possible.  A full life without the restriction of our mental illness is possible.

If you can just fight for it.

It's not about control, y'all!

Seriously.  I can't tell you how many times I have heard this.  It's a power struggle.  Stop fighting her and she'll stop fighting back.  It's about control.

I swear if I had a quarter....

It's not about freaking control.  But it is also something I have struggled to understand.  Especially how to explain it to others not living it.

You see, when your child has an eating disorder, particularly a restrictive one, something happens in their brain.  It's an anxiolytic response.

E is so overwhelmed and terrified of her world.  A world she does not understand.  A world that is scary.  We sat together last night while she cried because she was afraid to grow up.  Afraid of a time that her father and I wouldn't be here, because she needs us so much.  She was afraid of the standardized testing they are about to do in school.  She was afraid of letting go of the past, because she was afraid she would forget those that were special to her in the past and their memories.  Her stomach and brain were churning with so much fear and she became afraid that she was going to get sick.

It's a horrible vicious cycle.

Restricting her food (or, as she said to me last night, not eating so she will stop growing) has become like an addiction to her.  She has realized that when she doesn't eat, she feels better.  She is not afraid.  Restricting the amount and type of food she eats has become an addiction to her.  It has become her way of dealing with the anxiety that consumes her.

Think about it this way.  An alcoholic uses alcohol to deal with difficult things.  It soothes them in the chaos of their life.  But, from the outside, we understand how the alcoholism is actually destroying their life and their health.  It causes them to act and do things that they may not otherwise do if they were not in the grips of the need for that drink.  

To E, restricting is alcohol.  It has become what soothes her when she is afraid.  Is there a control element?  Sure.  But it's a false one.  One she has told herself and that her brain has convinced her is the only way she can control this world she is in.

But from the outside, from our point of view, we can see the damage this way of thinking causes.  The malnutrition, the aggressive behavior, the anxious movements of her hands.  But to her, she sees that she is doing her best to stop herself from growing up and our requirement that she eat is something to be fought.

She does not comprehend that this restriction will ultimately kill her.

She.Does.Not.Understand.

A very wise friend of mine said it this way.  "Thoughts control behaviors. She cannot control her thoughts. They are what are disordered. Her behavior comes out of the thoughts, not the other way around." 

When you see it as a control thing, you are seeing the behavior.  But the behavior is not the origin of the problem.

No.  This is not about control.  This is not about the parent/child power struggle.  Or the child/authoritative figure power struggle.

This is about fear.  Fear of living a life without her drug.  Fear of living life without her restriction.

Don't Stop, Can't Stop, Won't Stop

Lately, I've been unable to sit still.  I can't stop moving.  I'm cleaning, or painting, or organizing.  We are mostly done with one big project (replacing the doors in the house) and I can't stop planning for the next (landscaping and cleaning the backyard and remodeling a bathroom.) 

I laughingly joked to myself the other day if there was an "addiction anoynomous" for home updating.  Because I just can't stop.

Then at a recent annual well-check for myself, and they give you that ridiculous self-assessment form with a million different questions that ask the same thing but in different ways, one question stuck out to me.  It was on a form to assess your anxiety levels and it asked if you feel the need to be in constant motion.

Well.  Yes.

I mean, I knew the reason I kept moving was to keep myself from stopping and thinking because if I did the weight of it might crush me.  But I never associated it with anxiety.  It makes complete sense, in hindsight.  The question is, what do you do about it?

A friend posted this image this morning and it completely resonated with me.  They need to add the constantly moving, ha!  But do you see anxiety in your life?  What are you doing about it?

Sometimes self care isn't self care

Self-care seems to be all the rage these days.  Every where you turn, moms are being encouraged to "get away" and "do something for themselves."  Even the Today show did an entire piece on how women are focusing so much on others to their own physical detriment.

While this sentiment is very true and valid, they miss one very important piece.  What is the definition of self-care?

(disclaimer: this is not my image, but from Pexels)


Dictionary.com defines self-care as "the practice of taking action to preserve or improve one's own health." And "the practice of taking an active role in protecting one's own well-being and happiness, in particular during periods of stress."

But that definition is fairly non-descript.  Is it nails?  Or massages?  Or vacations?

Or is it simply sunshine, fresh air, early morning coffee and organizing your kitchen cabinets?

I have found throughout this last year that self-care for me is two fold.  Redecorating my house (sorry Andrew) and reorganizing/cleaning/decluttering.

And maybe it's more than just decluttering the physical space.  It's definitely self-preservation, because quite honestly, it keeps my mind focused on anything and everything than what I am going through.  It keeps the thoughts out of my head that so easily crop up when I have a free moment.

So yeah, I'm avoiding actually exploring those deeper recesses of my mind, but honestly that needs to be dealt with when I am no longer in the midst of a battle that takes every ounce of mental and physical energy I do have.

Maybe it's ok

"Maybe it's ok if I'm not ok
'Cause the One who holds the world is holding onto me
Maybe it's all right if I'm not all right
'Cause the One who holds the stars is holding my whole life."  ~We are Messengers

Mental health has a stigma surrounding it.  I don't know why but it seems no one ever wants to truly say how they feel.  Conversations never go more than skin deep when someone asks you how it's going.  How many times have you been asked that question just to respond with "it's going ok" or "things are great!"  And how many times has that actually been what you wanted to say.

I'm guilty of this, and not so much because I'm afraid of the stigma of mental health.  Heck, I'm not afraid to blast it on Facebook.  PTSD, anxiety, depression are rampant in my life and in my mind.  I've actually been discriminated against because I fully admit to PTSD following E's NICU stay, because I want the world to know that yes, the NICU can be THAT traumatic and PTSD is more common after a NICU stay than most would believe or know.  And I do so hoping that other NICU moms read it and realize that a) they have it too and b) it's normal after what they've been through.

But I think for myself, I don't say what I really feel because I don't want anyone to feel like I'm just a Debbie Downer.  I don't want to bring anyone else down just because I'm struggling.

And yes, I'm struggling, and not in a bad way.  Who wouldn't if you woke up every morning preparing yourself for battle and a battle that you don't know when it will end?  Would you be ok if you had to watch your kid with every meal display anxiety?  Picking her nails, her skin, playing with her food making you think she's eating it, going for her drink.  Anything other than putting the food on her plate in her mouth.  When every meal takes an hour, sometimes more, even breakfast.  A simple bowl of cereal can become a line in the sand.

I think part of why I am struggling is because my personality is one of transparency.  I need to share, to get these words out of my head, in an effort to reduce the power they hold on me.  The more I keep them in the more the bounce and echo and swirl with dizzying power.  But I've been afraid, yes afraid, to share her story in this journey.

But what if I wasn't afraid?  What if she wasn't afraid?  What if everyone shared and the stigma disappeared?  Yes, she has an eating disorder but it's not something to hide and only share in whispered back room conversations like she has the plague.  Yes, we avoid any activities that include food because I'm not having that battle in a room full of people.  Not because I'm embarrassed by her, but I am, in many ways, afraid of how others will see her in the midst of the lack of knowledge surrounding eating disorders and mental health in general.

The song Maybe It's Ok has been bouncing around in my head for a few days now, especially the "maybe it's ok to not be ok."

Remove the stigma.  Because sometimes it really is ok to not be ok.