The Laundry Gospel

I’ve been writing since I was young (because 25 is clearly older than dirt, no?), and for as long as I can remember, I’ve been really into words and metaphors. 

I can’t imagine anything more fun than finding a metaphor for something that is hard to describe in words; to take an ineffable concept and mold it into a word picture is a beautiful thing, a work of art.  One of my favorite metaphors, or actually, it’s more of a meta-metaphor (that’s the new word I just invented to describe a metaphor about metaphors), is one I thought of several years ago while trying to describe the process of putting words to a difficult idea.  It’s like birthing beach balls.  That is to say that trying to take a massive, life changing concept and package it neatly into black and white print is something akin to giving birth to something huge and cumbersome.  It’s a true feat, and one that is incredible but simultaneously so exhausting that you’re simply too tired to do it again for a long while.  And so it is with my metaphors.

I think we could agree that doing laundry is more or less a necessary evil.  Sooner or later, you have to do it.  For most of us, our clothes get stained.  If you’re blessed with being super-clean, or if you wear black all the time, your clothes may not look dirty, but sooner or later, they will start to smell.  And so, they must be washed.

I don’t know about you, but I’d never make it to the point of smelling.  Many ladies may have a scuff here and a mark there, but not me.  I’m more of the ketchup blob on the new white tee shirt, kind of gal.  My chest only seems to be good for catching offending blobs of stuff, and when it’s sleeping on the job, my lap likes to play backup.

With that in mind, I want to come clean (no pun intended) on the biggest, blobbiest stain of them all in my life: I.  Get.  Ugly.   

I don’t mean that when I take my makeup off, I scare small children.  I wish that’s what I meant, but I rarely even wear makeup.  No, ability to go from zero to ugly is my deepest, darkest secret.  It’s that thing that no one knows, that no one would believe if they heard, until they saw it.

The ugly is my reaction when there’s a straw that breaks the camel’s back.  It’s as if each stressor in my life is another brick on the load that I’m holding in my arms.  I can handle two or three just fine.  Four is taxing, but I’ll figure it out.  But throw brick number five on and honey, you’ve just opened yourself a can of worms!  I cry.  I hyperventilate.  I panic.  I go completely into fright or flight mode and I try to do both at the same time.  I get angry with myself and verbalize it.  I just absolutely lose it.

Before you go looking for the key for the mental facility we talked about earlier, let me give you a taste of my last bout of ugly, which happened to be Wednesday of last week.  It was, in fact, an ugly so ugly that it may forever be known as “that Wednesday” amongst those who experienced it with me.

My last 15 months have basically been a long bout of malnutrition.  Even with my feeding tube, there are times that my body decides it doesn’t want to process anything I put in it.  Until just a few days ago, I was functioning on several hundred calories and single-digit grams of protein each day.  While my stomach has long since stopped growling, it’s a level of starvation that starts to mess with my mind.  I cry much more easily when I’m not getting enough.  I’m more irritable, more grumpy, and basically setting myself up to freak out.

And then, my stomach, which is affected by nerve damage, goes through episodes of severe pain.  I likened it to being split it half… which, considering I’ve actually kind of already been split in half (I have a five inch vertical incision from where my tube was placed), I can honestly say that the real splitting doesn’t compare to the pain of this past week.  That kind of discomfort makes me emotional after a day or two.

Two weeks ago, after my fourteenth hospital admission in eleven months, my parents felt that I needed better care and moved me to a nursing home.  Do I need to repeat my age one more time?  I’m surrounded by people many times my age who don’t know where or who they are and can’t bathe or use the bathroom by themselves.  I have zero privacy, no quiet, and nurses and aides asking me very personal questions, round the clock.  I’m the girl who was uncomfortable the last time the smiley face in my friend’s email signature mysteriously lost its nose.  An unexpected move to a place like that is cause for a lot of panic and tears on my end.

My mom and I get along famously… we have fought all of twice, that I can remember.  One of those times was Wednesday, and it was bad.  Really bad. 

Then, the nursing home called to tell me they were taking my disability money.  Actually, it was being cancelled.  The med that makes my pain level livable is expensive and only out of pocket.  Sorry, kid. 

Oh, and I’d only gotten four hours of sleep.

So, when a friend, “wanted to talk about something” with me, and when you understand that my lifelong experience of “I want to talk to you” involves my stepfather going off on me, and she wanted to talk to face to face which is very difficult for me to process…

Tears, panic, worry, obsessing… in short, ugly!

I don’t scream at people.  I’m more likely to take things out on myself.  But I did ask my friend if she was mad about fifty two thousand times, and I obsessed about what she wanted, I worried about what I had done wrong, and was she sure she wasn’t mad at me?  This went on for hours until she basically say, “Oh. My. Word.  It’s done.  Off the table.  Let it go.”

Now I was sure she was upset with me!  I was all out at war with myself.  I wasn’t angry, but I was overwhelmed and confused and completely unable to process everything at once.

You might be thinking, my goodness, that really is some ugly stuff.  I’ve never done anything like that!

And, if I’m honest, that’s what I’m afraid you’re thinking right now.  In fact, I’m afraid you’ve already put this book down and written me off as too crazy to know anything about helping anyone.  This was last week, for Pete’s sake!  Clearly this girl doesn’t know a thing about a functional life!

Stop!

I’m going to speak truth into those thoughts.  For one thing, I’m here thinking them about myself, and that isn’t okay.  But for another, you may be directing similar thoughts toward your own story.

Back to thinking that your own ugly is just too ugly for Jesus, again?  We talked about that, and this is where I’m going to remind you that there is no sin too great for Him!  He came to redeem us from all wickedness (Titus 2:14).  All wickedness… no matter how ugly.

Whether you’re a scuff on the shoe girl or the lady with the bright red blob of ketchup trailing down her shirt, it doesn’t matter how dirty your clothes are.  In order to meet Him in heaven, only those with pristine clothes can come in.  In this metaphor, Jesus is the only one who has any soap.  He, only He, will wash your stains as white as snow.

Lord, thank you for meeting me in my mess.  Thank you for washing my “ugly” as white as snow.  I know that there is absolutely nothing that I could say or do that Your grace wouldn’t cover.  There is no ugly too ugly for You!  As difficult as it may be in the moment, Lord, please give me the grace to forgive others as You have forgiven me.

You painted the skies with your fingertips,

Imagined all the galaxies.

Before the first day’s sunrise came peering

After the pale moon of first night

When there was no light to speak of yet,
You had all Creation in your sight.

Since before all time began,
Since before the dawn of ages,

You orchestrate the grandest schemes

All heaven sings your praises.

The wing beat of the hummingbird

That lets him flit and fly

The careful way the caterpillar

Cocoons to become a butterfly

Life comes in so many details

And yet because it is Your way
To the God of life on dainty scales

All heaven sings your praises.

Lord, I see You conduct the heavens

I see You in diminutive designs

Can a God of scales so small and huge

Really know this hurting heart of mine?

To be completely hones t with You,

My heart often feels forgotten,

While Your hands paint skies and wings

I’m waiting, empty, scared and fraught,

“These hands that painted skyward sunsets,

That parted cloud from sea,

Were the same two hands in which I knit

You, my child, into being.

I know what it is to have a lonely heart

I’m all to familiar with Your call to home,
But I promise you, if you wait for Me,

That these hands, from heaven’s throne,

Will be there when you’re crying,

When you need a hand to hold, too,

That I can, because these precious hands

Were nailed upon the tree for you.

From my perch, adorned in rosy garb

Unsuspecting, I note a lofting tree,
Rooted in the yard.

I don’t know whether it is oak or pine,

Nor whether it stands small or great,

If it’s offered shade for a century,

Or held climbing children by its weight.

The striking chord of my friend tree,

Is not the former or the latter,

But the fact that she stands outside the window;

For her roots are all that matter.

Some have roots to another person,

Some have them within four walls,

Some might move them periodically,

I thought I had no roots at all.

For I haven’t any person,

I haven’t any home,
I haven’t any… Anything,

To call my very own.

I looked at my tree and chided her,

How dare you mock me so?

You tantalize me with your roots,

Right outside my window.

My tree, she answered, timidly,

Oh, friend, I never meant you harm,

I only meant to give you cause,

To pause and make your heart grow warm,

For when I look at you, I wonder,

What it must be like,

To have roots in a Person,

One made of Love and Light!

One Who will never leave you,

Nor of your musings tire ever,
One Who is always with you,

In Whom you might find rest, wherever.

I found myself quite lost for words,

Apologetically, I said,

My tree– I had no idea,

And this is what she plead:

I bid you, when you look at me,

That you promise to recall,

Your sweet Savior, ever there,

The deepest Root of all.

That which informs his melodies

His lonely fate, behind the bars,

Is just the reason that he sings.

He peers at the world outside his caste,

Watches ever from afar

For even when the door is open

He cannot live beyond those bars.

The bars aren’t wrought of iron,

The door not made of stone.

But he lacks the certainty of self

He needs to stand alone.

And so he trudges on by day,

Pondering by night,

Of what his life could, or would be,

If he dared take flight.

Though he may never find within

That which he needs to fly,

He acquiesces to contentedness

In watching life pass by.

So when  the world around him beams,

He whistles songs of joy,

And when crumbles downward,

Musical tears he will employ.

But sadder yet than any song

That I’ve heard him impart

Is the song he whistles upon pondering

His stance of caged heart.

Life is easiest for me when it’s compartmentalized.  I have this, my autism blog.  I have an eating disorder recovery blog, which is set to private, and I rarely use, although I should.  And in my mind, wrestling with my latest diagnosis warrants a third blog… but… just, hold up, here.  That’s not how life works.

In conversation with Leigh last night, it came up that my recent… issues.. points to a specific diagnosis.  It’s rather a scary diagnosis, because people who are labeled with these disorders are typically more or less shunned.  They are viewed as so difficult, so impossible, that any kind of close relationship with them isn’t worth it.

Even if I’m only saying it for my own good, I’m going to say it: I am worth it.

I have a lot to offer… I’m bubbly and engaging when I want to be.  I’m extremely creative and artistic.  I’m intelligent and interesting.. when I want to be, again.  I’m loyal, very honest, and so loving.  I can be a really top notch friend.

… usually.  Suffice to say that when things are bad, they get bad.  When my switch gets flipped, I can tear my entire world apart, piece by piece, in 90 minutes flat.  When the dust settles, I look around, wrecking ball still in hand, horrified; who made this mess?

Oh, my word.  It was me.

This is part of what led to The Email from my church friends the other night.  My reaction to said email was yet another reign of fury.  Dust, now settled, has left me utterly broken.  I stand in the midst of the rubble… peeking around a corner, I ask, so quietly, is anyone still with me?

They are.  They’re still here.  I don’t understand why.  That is simply superhuman grace.

Having hit absolute rock bottom, having torn my world apart brick by brick, I am now searching for the means by which I can begin to rebuild.

I am going through a workbook of a specific type of therapy that has helped people like me.  I’ve used it before and have found it very useful.  I am focusing on this work with my outpatient therapist, and she’s applied me to a partial program that uses it, one I’ve done successfully before.  All good steps.

I’m expanding my horizons, even beyond my comfort zone.  I’m looking for a volunteer opportunity here.  I’m writing again.  I’m involving myself more in my art and less in my need for constant communication.

I’m being honest with myself.  Yes, I have this diagnosis.  But it is one that I can overcome, one that, in time, I can even lose.  I am nothing if not determined, even incredibly stubborn, and I will apply my laser beam focus to rebuilding what I have destroyed.  I’m also being honest with those around my, my family, my friends, my counselor.  Hiding from the issues doesn’t get anyone anywhere.

This post is a first attempt to streamline my compartmentalized life.  I no longer want to view myself as a person with autism, a person with mental health issues, a person with physical disabilities, and so forth… so, let’s just back up.  But I’m quite certain that God doesn’t call me anything other than Lydia, so that’s what I’ll call myself.

If you were to ask me how I’m doing, I’m not even sure that’s a question I could outright answer.  In what sense?  Because the answer to “how has your food intake been today?” and “how has your mood been today?” and “how has your pain been today?” may be three entirely contradictory things.

How am… I?  How am I, not how are my issues?

I… am finding freedom.

I’ve struggled greatly with the logistics of a self-informed identity in the past, um, always.  I’m not aware of many preschoolers who have episodes of metacognition in which they struggle with their lack of a sense of purpose, but I’m also sure I can’t have been the first.  For many years, my purpose was academics.  And then it was autism education.  And then…

That’s when life began to catch up with me.  To summarize, I’ve spent the last two years being sick.  I lost my sense of purpose.  I have mitochondrial disease, among about nine hundred other conditions, and that could mean that my organ systems are beginning to fail.  There is no treatment or cure.  That… is where I was stuck.  Lovely little autism quirk that gives me a single-track mind meant that the medical track was playing all the time.  Not to mention, I now live in a nursing home, and I survive by way of a port in my chest, a feeding tube, and various other technologies, not to mention over three dozen pills per day, 15 hospital admissions in the last year, so, it’s a little bit hard to get away from.  I’ve more or less lost all sense of Lydia.

But then… did I ever really have  a sense of Lydia?  Did I ever really know who I was apart from labels?  I’m not convinced that I did.

It took some very special, amazing people in my life writing a very, very difficult e-mail to open my eyes.  Life, the way I’ve been living it, is not healthy, for anybody involved.  It has to change.  Part of it changing means exploring… just exploring.  I need to do what I do well, and one of those things is write.  I need to write, completely outside of anything medical.  I thought about start another blog, leaving this one, but the aspect of my identity that is tied up in autism, well, I don’t believe that part is unhealthy, and I intend to use this platform to explore my life.  Sometimes that will involve autism, and sometimes it won’t. You’re welcome, as always, to join me on the ride of whatever I discover along the way, or you’re welcome to hop out of the vehicle right now; I won’t be offended.  I don’t know what’s ahead of me.

But I know it will be good.

While you’re here, here are some things that have changed in the last 2 years:

Leigh lives in LA.  She’s still Leigh, and she’s still my best friend.  I’ve been out there twice, visiting, most recently in April 2013.

Elsie Penelope did, as I mentioned on here, go home to chase pencils in heaven in January 2012.

The Goose is my current kitty, and she is fantastic to the nth degree.  How do I always get the world’s best kitties?  She lives back at my parents’ house with my mom’s kitty, a Persian named Tia, and my parents’ elderly dog, Truby, who you’ll never hear about.  I see Goosey twice a week and she gets all her snuggles in.

I never did get my service dog due to health reasons.

I live in a nursing home.  I generally just try to make the best of things.  My roommate here, J, is in her 50s and  whole ball of fun.

My sister and her husband moved back to Pittsburgh.  She is pregnant, and “our” baby is due June 24th and I cannot wait.

I’ve recently gotten into more art stuff; I do a bit of painting, freehand embroidery (I call it my stitching), sketching, and so forth.  I’ve written some music.  I still do poetry and I’m 50 pages into a book that I don’t think I have a mind to finish.

Me, turning to my friend: I have to go.

Friend: “…?” (It was evident by the look on her face)

Me: Well, give me a hug!

Friend, still confused, gives me an awkward sideways hug.

Me: Okay, bye!

I’m fairly well known for my disappearing acts.  I’ll be in a group of people, and the next thing anyone knows, I’m not there.  Usually it’s because I’ve had a panic attack and run to my car to go home, or run to the bathroom to cry.  I do it at family functions too… find my mom to take me home, and go, without ever saying goodbye.  So first and foremost, let me say that the fact that I said anything at all was a huge improvement.   I didn’t just disappear.

I have the ability to say goodbye appropriately.  In this situation at church, I could’ve easily whispered that I had to meet my mom at 10:30.  Knowing that it was 10:10, my friend would’ve surmised that in order to get there on time, I needed to leave now.  Very simple.  But if I don’t rehearse, if I don’t run through things in my head sixteen times beforehand, I often can’t access that ability.

This most often happens with language, for me.  I have the ability to say xyz, but in the moment, if unprepared, I don’t have access to that ability, and what comes out is… well… you never really know!  Whether it’s answering how are you with you too, or whether it’s being unable to ask are you okay, it frustrates the heck out of me.

I know that I’m miles ahead of where I was some time ago… but I also know that I have miles to go before I sleep, if you will.  But then, without the need to work on myself, wouldn’t life be boring?

As long as I have the word autism attached to my name, there are certain preconceptions and connotations that that word carries with it.  If you hear that I’m autistic, you’ll probably assume that I’m not the best communicator.  And you might assume that I can be rigid.   You might also guess that I don’t do well with other people, with friendships.

That’s where I’m about to prove you wrong.

In October of 2011, my evaluation stated that I had absolutely no insight into normal human relationships.  That’s a blow for someone like me, who happens to love her friends and family fiercely, intensely, and completely.  It hurts to hear that.

I’ve known in the past several months or so that I’ve made a lot of progress in that area thanks to some very patient friends, but I realized just how much progress I’d made when I discovered that I’m doing better than a lot of people my age…

I was on Facebook a few weeks ago when I saw a meme posted by an old friend, my age, that said, “Real friendships are based on a solid foundation of alcohol, sarcasm, inappropriateness, and shenanigans.”

She might’ve just been joking around, but I know that for some people that’s the truth.  And I thought of my friends, and what our friendships are based on… things like shared worship time learning to say I love you in person.  Our “shenanigans” are going to the grocery store and stopping for a bite to eat (oh, once upon a time when I still ate).  I can’t say any of my friends are big on sarcasm, and neither am I.

I have a handful of autistic friends via the internet that have proved tried and true through my recent ordeals.  Some of them speak, and several of them don’t, or prefer to type.  Some of them need fairly intensive supports.  They have varying levels of ability, disability, maturity, and so forth.  These girls have taught me about true friendship.  Why must it be such an unlikely source, a person with autism?  When are we going to realize that people with autism make some of the most loyal friends?

Want to know what real friendship is?

Ask your local autistic person.  Better yet, let her show you!

Some months ago, back when I was a regular blogger and all, and I think it was around Christmastime, I wrote a post explaining that sometimes, all we (autistics) is to get a break from what we “should” be and to be who we really are.  And so, in the piles of Christmas and birthday presents, I think that the child should certainly receive therapeutic toys, but also receive what he wants.  This might mean that you’e 15-year-old grandson get Thomas the Tank Engine toys.  It might be that your young adult daughter wants a specific doll.  If you ask me, that’s perfectly acceptable.

I spent last week in the hospital trying to sort through some serious GI issues and of course we are no closer to figuring things out than they were when I went in.  I have an appointment with gastroparesis specialist on Monday.  My PCP wanted me back in the hospital yesterday but I convinced her to let me try to stay hydrated at home.  The scary part is my blood sugars, of course.  With the GP, they swing wildly and are downright impossible to control.

Anyway, as I laid in the hospital and paced the halls with my IV pole, friends stopped in almost everyday.  Each time, the friend would ask what she could bring, and each time, I said, “I just want to see you!”  Yeah, right.  Silly friends insist on gifts.

And I was so excited at the realization of how well my friends know me.  I have a giant cat stuffed animal, and a giant black lab puppy one, cat magazines, cat bracelet, even a little rose bush.  Yes, I’m 24 and probably “shouldn’t” love stuffed animals like I do.  I say, who cares?

Speaking of 24, I may be getting old, here. I still can’t see the screen.

PS- Happy 500th blog post to me

Everyone else carries a purse.

I carry a backpack.

Maybe I want to carry a purse too?

Now hold on a second.  Don’t for one second think I want to assimilate into society to the point that I’m indistinguishable from everyone else.  No, no.  That’s not me.  To some degree, I’m always going to stand out, whether it’s my extreme shyness, my health issues, or my soon-to-be-service-dog.  My communication style is unique, and while I’m not socially inappropriate, I definitely have my own style there, too.  I don’t know if I’d maintain a full autism diagnosis at this point, but I’ve got the quirky thing down pat.  I’m okay with that.

But there are certain ways that I don’t really want to stand out.  My “thing” right now is that, as I’ve grown up so much mentally in recent months, I want to look my age, too.  I’m 24, but I don’t really look like I’m in my 20s.  My backpack, Disney t-shirts and such don’t really help this situation.  I constantly get asked what grade I’m in.

And so, I found a purse.  A nice huge shoulder bag, the brightest coral I’ve ever seen.  It’s all Lydia.  It stands out.  But it stands out in a way I like.

My mom took me shopping for, shall we say, grown up clothes.  Today at church (where I subsequently had a panic attack and bolted from, but that’s another story), I was told that my shirt was pretty… rather than awww, how cute, Mickey Mouse.  My clothes are a little unique.  They’re me.  In a good way.

Next, I’m after a hair dryer.  I go out with wet hair all the time, but I think it adds to making me look younger, so I’m going to dry my hair before I leave in the morning… most days.

I find that as I make these changes, I realize that I’m even more comfortable with myself than I ever was before.  I feel like me.  Quirky, yes.  Stand out?  Maybe so.  But in a way I like.

Just don’t expect me to wear make up everyday.  That’s pushing it!