Autumn

All his life has he looked away… 

to the future, 

to the horizon.  

Never his mind on where he was.  Hmm?  

What he was doing.  

Hmph.

Adventure.  Heh.

Excitement.  Heh.

A Jedi craves not these things.

-Yoda

We took a drive through the valley of the Special K Ranch on our way home from Billings last Sunday.  I don’t know the name of the valley itself.  All I know is that it’s Autumn, that bursts of red and yellow and orange line the banks of the Yellowstone River.  That sandstone cliffs rise open faced into the sky on the other side.  And that the Beartooths stand like a row of rounded, white pyramids along the horizon, across seemingly endless fields of shaggy gold grass.

Nothing lasts forever, does it.  Not the leaves.  The trees.  Not even the mountains or the rivers.  It is something that I’ve contended with all my life.  I try to hang on.  Too tight sometimes.  I do it in all sorts of ways.  Sometimes I deny it when I see things changing.  What?  Nothing’s changing!  Sometimes I get mad at people when I see things changing.  Like change is their fault.  

Sometimes I try to use guilt.

I got this one from my grandmother I think.  She used to be the grand master of guilting people into doing things her way.  No one dared miss thanksgiving dinner for example.  Or show up less than famished.  Or leave early.  It was like watching a conductor orchestrate a symphony. 

I don’t like this about myself.  I believe guilt to be the single most useless emotion there is.  I mean, it serves a primitive function, in that guilt is the thing that tries to get us to stop when we’re doing something wrong.  But I also believe it to be the reason we humans don’t want to look at the things about ourselves that keep us from being who we want to be.  It actually keeps us from looking, because we don’t want to feel the guilt, which keeps us from growing past ways of being that no longer serve us, and keeps us from getting better.

What if we all just clipped guilt off when it arose?  Like a weed?  I think we could see ourselves much more clearly if we didn’t have to beat ourselves up in the process.  We could just decide to try a new way of being, could just move forward with anticipatory joy.

My point is that things change.  And once they do, they can never go back to being the same again.  But I don’t want to manipulate people today.  I don’t want anyone to ever feel guilty about anything to do with me ever again.  

I don’t know much about the Special K Ranch itself.  But I’ve often been asked if my son might end up there some day.  As we drove by, I saw houses and cattle and wide open spaces.  Greenhouses lined the road for awhile - they clearly grow a lot of vegetables.  And it is in a beautiful location.  Its probably the best place in the state for kids with special needs.  People probably wait years and years, and hope beyond hope that an opening becomes available to them.

I only resented it.  Best place or not, how could anyone care for my son better than me?  

I still have to sing Cale to sleep at night.  He wants me to.  Just last Wednesday night, as I came in the front door after a meeting, I heard the familiar sound of him jumping out of his bed.  His feet hit the floor with a thump, and the pitter patter of his footsteps grew louder as he ran up the hall and rounded the corner into the entryway. 

Shane had put him to bed already so that he could start getting things ready for us to go to Billings.  But whenever Cale hears me come into the house, even if his eyelids droop with sleep and drool creeps towards his pillow, he jumps out of his bed and runs to the front door.  

He stopped in front of me.   

Cale has this way of looking up at me.  He stills his whole body as he finds my eyes.  Then he cocks his head, his own grey eyes shining in the light from the kitchen, and lets his face lift into the biggest smile.  Our eyes stay locked as he walks to me.  He takes my hand.  Then he stands there and watches me like that for a moment, as if I’m the most beautiful person he has ever seen.

Then he starts pulling me toward his bedroom.  I’m supposed to lay down with him and sing him his night-night song, even though Shane has already done it.  It usually annoys the crap out of me.  By this point in the day, I really just want to put my own pajamas on, crawl into my own bed, and maybe watch a little Star Trek before going to sleep.  Yet I have to put Cale to bed first.  Even though it has already been done.

But it didn’t annoy me on this night.  As we walked to his room, my chest swelled with love for him, and with so much gratitude for having him in my life.  I tucked him in, laid down beside him, and began to sing.  He started giggling.

Cale’s night-night song has begun to bore him a little lately.  So I’ve started changing it up a bit.  I sing the words with softness and passion, punctuated, every now and then, by a sudden and loud, tongue-made farting sound.  I follow this up with a look of shock and an “excuse me.” 

Cale laughs so hard.  Every time.  Full body, belly laughing.  I usually laugh too, my stomach cramping with the force of it.  My son giggles himself to sleep at night.  It’s the best thing.  His eyes get heavy and eventually stop opening, but he still smiles, his tongue trying to form farting sounds - pssths - as he drifts off. 

How had I always taken this for granted? 

Earlier that afternoon we had gotten a call from Cale’s caseworker.  Cale’s psychiatrist apparently feels that he has reached the end of what he can do for Cale.

Cale has had a tough year.  But when hasn’t he?  He’s eleven years old now, yet he still can’t talk.  He can mimic a few basic words that he uses every day.  And he can use his iPad to get items that he wants or to communicate that he needs a break.  But he can’t say what he’s thinking.  How he’s feeling.  And during this past year, in particular, he has developed a rather serious case of O.C.D.  

He gets stuck in one spot, for example, sometimes for an hour at a time, because the boots or the cups or the pillows or whatever he’s collected from around the house, won’t line up just right.  It takes him twenty minutes to get out of the bathtub in the morning because he’s got to get his twelve cups lined up just right along the edge of the tub, but then he’s trapped in there because he can’t get out without knocking some over.  And it takes him another twenty minutes to get his socks and shoes on in the morning because he has to flip him in the air, over and over again, until they land just right, before he can put them on.

I hide a couple of the cups every now and then, thinking it might be easier on him if he has less to keep track of.  But he notices this, and he screams and looks for them - and I mean for three straight hours - until we’re so desperate for peace that we finally give them back to him.  And the school bus refused to take him to school for a week, a few weeks back now, because he screamed - while taking his socks and shoes on and off, and on and off, etc. - upsetting all of the other children on the bus on the way to school.

This sort of thing has happened with every item of clothes he has at some point this year.  And it would be fine if he just wanted to take stuff on and off all day long.  The problem is that he perseverates on it.  In other words, the longer he takes stuff on and off, or tries to get stuff lined up, or whatever, the more upset he gets.  He gets more and more upset until he finally reaches full blown meltdown mode, complete with self harm and violence towards others.

I started photographing the wounds he leaves on people this year, and showing them to his psychiatrist.  Perhaps I shouldn’t have done that.

The problem with it is that he suffers.  And others suffer from it too.

Last summer, he woke the whole house up in the middle of the night with his screaming, on a regular basis, as he took clothes on and off and on and off.  I eventually got rid of his dresser and put his clothes in bins on a high shelf in his closet.  But he’s eleven now and not stupid.  He just pushes his bean bag over, or gets a chair, and gets the bins down.  And there’s no stopping him.  I eventually have to turn away to make dinner, or pay one second of attention to one of my other children, or fall asleep at night.  And when I turn back around his clothes are spread like carpeting all over his bedroom floor again.

And when I take all of his clothes and hide them in a bag in the basement, he just gets into everyone else clothes.  It is relentless.  And unstoppable. 

One night last summer, sometime around 3am, as Cale woke the entire house with his screaming one more time, I told Shane that I was going to take all of the clothes in the entire house and burn them in a bon fire in the back yard.  I got up, rummaged through a drawer for a couple of lighters, then went into Cale’s bedroom to collect the clothes he was screaming about right then first.  But when I got into his bedroom, he was sound asleep in his bed.  Screaming.

He was DREAMING about obsessing over his clothes.

I knew then that not even burning all the clothes in the entire house would bring us any peace. 

So the psychiatrist has changed, and increased, and changed, and increased, and changed, and increased, the dosages of Cale’s medications nearly every month all year long.  We’ve had the hardest time getting Cale back to normal - well… normal for him - this time.

I came to accept, a long time ago, that even though Cale always does well for a little while after a medication change, or some new compression clothing, or whatever, he’ll probably always eventually slip away into some sort of suffering again.  Then we’ll change his medication or whatever again, he’ll do well for awhile, but will eventually slip away again.  And so forth.  We’ve seen it over and over again.  I’ve always just figured that this is how it goes with kids with Autism and chronic and persistent developmental disorders.

I guess I never realized that the professionals could reach the end of what they can do.  I never thought that, one day, Cale might slip into some sort of suffering that we might not be able to get him back out of.  I have feared it, here and there, I admit, but have been told that it is an unfounded fear.  So to have the caseworker actually say it…

We’ve got an appointment with Cale’s psychiatrist in a couple of weeks.  It’s scheduled to be an hour long meeting, and the psychiatrist doesn’t want Cale at this appointment because he wants us to be able to pay attention.  Because, the caseworker said, we’ve all got some difficult things to discuss.  It’s time to start talking about long term care.

“Long term care?  What does that mean?” I asked.

“Institutionalization or group home placement,” she said.

My heart landed in my stomach.  And it’s been there ever since I’m afraid.  I can’t see straight.  I can’t think straight.

The funny thing is that Cale is doing so well right now.  He hasn’t been aggressive at all lately.  He’s been calm and happy for the new babysitter.  He’s been falling asleep at night giggling and making farting sounds.  But I guess he’s on the highest doses of his medications that he take.  In fact the psychiatrist is quite nervous about how high the dose of one of them.  So the next time Cale slips away into the unrelenting torment of boots refusing to line up just right - picture me rolling my eyes - we won’t be able to up his dose again.

The next time he slips away, it might be for good.

At any point.

We never know.

Of course, this has always been the case.  Shane and I have always known not knowing when to be our reality about Cale.  And this psychiatrist is only one doctor.  There will be more doctors.  More ideas.  More things that we can try.  But one of these times, we might not get our son back.  

We know.

Shane had just gotten off the phone with his parents when Cale’s caseworker called that afternoon.  We’d already made the plan to go to Billings for the weekend, because Shane’s mom was feeling down and wanted to see us and her grandkids.

Because the doctors have come to the last thing that they can do for Shane’s sister too.  If it doesn’t work this time, there won’t be any more that they can do.

Shane and I held each other on the couch for the rest of the afternoon and cried.  Cale kept sticking his knees into his dad’s tummy, laughing and trying to get Shane to wrestle with him.  And the next day, even though it wasn’t quite the weekend yet, we put the kids in the car and went to Billings.

We had an incredible time.  We laughed together, cried together, and laughed a whole lot more.  We talked to our kids about life and death.  About holding on and about letting go.  We got to show them what it means to be wide awake in the present moment.  To be really sad, yet okay at the same time.  To be okay while not okay, if that makes any sense.  

I don’t believe the point of life is comfort or pain avoidance.  The point of life is to be alive right now.  To feel all the grief and all the joy, all the love and all the change.  What a gift it has been to be able to love people so much that I want to keep things the same.  And to feel the leaves crunch under my feet on the sidewalk.  To watch the Autumn colors explode like fireworks in the skies above house-lined streets. 

Alden’s friend, Bret, said, Funny, we like the leaves the most as they are dying.   

Butter

It’s like I’ve been under water.  Like I sunk so far down that I couldn’t get back up.  I could still see the rays of light wiggling on the surface, and kept swimming and swimming toward them.  Swimming toward you.  But the swimming no longer moved my body. 

It started a little over a year ago now.  The ENT pressed his fingers into the incision in my throat, his silver hair a blur in the corner of my eye.  My friend, Gaaby, sat in a chair against the wall, the tip of her pen to a page in the notebook opened over her lap.

Her name is pronounced Gaw-by, by the way.  As in short for Gabrielle.  A person messes that up once, I politely correct them.  Twice and they might find my fist in their teeth.

Say, “EEeeeeeeh,” the ENT said.

I tried until it hurt.  But my voice made no such sound.  

The first description of my problem had been a small nodule on my thyroid, which, upon further investigation, turned out to be a large tumor that had replaced over half of the thyroid tissue itself, and had ballooned outward from there.  Only one tiny part of the left side of my thyroid had survived, which was the part they’d left in place when they’d surgically removed the tumor.   

The ENT pushed his office chair back a few feet, the wheels ascending to the octaves my voice could no longer reach, his face coming into focus.  He apologized again for having initially said he didn’t think there was cancer in the tumor, but that now that he’d biopsied it and had found cancer, I really did have to have another surgery to remove the thyroid piece they’d left in place, followed by a radioactive iodine treatment that would kill any remaining thyroid/cancer cells. 

Scribbling sounds rose from Gaaby’s lap.

To answer the first question I’m always asked - no, a person can’t live without a thyroid.  It’s not a left over from pre-historic days, like the appendix.  It’s a vital organ.  Without the hormone the thyroid produces, which controls (amongst other things) a person’s metabolism - the speed at which everything in one’s entire body, including the brain, functions - all the organs slowly shut down one by one.  And the person dies.  This is why, when a person has their thyroid removed, they have to take thyroid hormone replacement medication for the rest of his/her life.  

So the heart keeps beating.  The lungs keep breathing.  And so forth.  

I knew that giving the doctors my entire thyroid meant giving them absolute control over my physical life.  What I didn’t know was that it would murder my writing.   

I’ve been reading about what it’s like to live without a thyroid, I said to the ENT at one point, and it sounds like it can take a long time to get the medication properly adjusted.  I’ve already gained fifteen pounds I can’t seem to lose. 

This was why I’d gone to the doctor in the first place.  Because, for me, being strong and healthy isn’t so much about looking good (not that there’s not a little of that).  It’s more about being able to handle my son with non-verbal Autism.  

Cale is ten years old now.  He’s getting so big that his strength nearly matches my own.  I have to be an adequate stopping force when he attacks his sister or brother, or some little kid at the grocery store.  I have to be able to pry his increasingly muscular fingers from faces before his fingernails draw blood.  So that no one ever decides I can’t handle him.  

So that no ever decides he should be removed from our home.  

You can’t take the rest of my thyroid, I said to the ENT, his bright blue eyes blurring through my tears.  I’ll grow weak.

No, he said, rolling his chair back to me and patting my knee.  This is the twenty first century.  We have excellent doctors, and excellent medications.  We will not let that happen to you.

We will not let that happen to you.     

That’s what he said.

I glanced over at Gaaby, who was skimming her notebook now - probably making sure we had the next surgery date right, whether or not I should eat first that day, and so on.

Once I was all healed up from the surgeries and such, the first thing I noticed was that the strength training workouts I do - workouts that I’ve done for the last ten years, workouts that have always been an absolute breeze for me - were so hard to do that I couldn’t stick to them.  I’d do them every day for about three weeks - during which they somehow never got the slightest bit easier - only to hop on the scale and find that not only hadn’t I lost any weight, I’d gained a couple more pounds.  So I’d give up - it was just too hard - for about three weeks, and then start the whole process all over again.  With the exact same results.  

I did this over and over and over again, for a year.  

One day, I woke up.  I threw away all of my clothes, bought a pack of cigarettes and a pair of sweat pants, and vowed to never, ever exercise again.

I’ve had other symptoms of not having enough thyroid hormone in my body too - freezing my butt off all of last summer (yes, I said in the summer), and pulling my hands away from my head in the shower to find webs of hair holding my fingers together. 

Now I can’t pry my son’s fingers from skin, in spite of pulling as hard as I can.  And he pushes right through me when he attacks someone.  Yet even this isn’t the worst of it. 

The worst part is that the water turned into concrete.  I didn’t know that it could do that.  

Making breakfast for my kids in the mornings has been like swimming through concrete.  Getting the kids off to school has been like swimming through concrete.  Taking the kids to their endless doctors’ appointments and therapy appointments (Shane’s been coming with me to help contain Cale during his tantrums a lot), concrete.  Making dinner (we’ve been eating from McDonalds a lot), concrete.

Trying to talk in a way that makes sense to other people…

I walk into a room and forget why I went into that room… 

I haven’t been able to write at all.  I’ve been able to perseverate on (and mutilate) stuff I wrote a year ago.  But until quite recently, I haven’t been able to access any kind of a flow of words.  I stopped meeting with the women from my writing workshop last summer, and after that began arranging my life in such a way as to minimize ever having to leave my house.

I haven’t been feeling bad exactly.  I just haven’t been feeling anything at all.  

When you’re a spastic and overdramatic thinker like myself, it’s nice to be a zombie for awhile.  It’s peaceful.  There is no up.  No down.  No joy or sorrow or happiness or fear.  But after days and weeks and months and months and months of it - with no end in sight - I really did start to wonder what the point of living even is. 

Every six weeks, for just over a year, I had my blood drawn.  And every six weeks they increased the dose of my medication.  Every now and then I felt, for a few days, like the concrete was softening, only to have it solidify again.  

And yes, I complained endlessly to my endocrinologist. 

Finally, my first endocrinologist - the one the lying ENT referred me to - quit or moved or something.  So I was assigned to another one, who couldn’t figure out why the first one had been screwing around with all of these 3 mcg increases all year.  My new doctor started raising my dosage 15mcg every time I had my blood drawn (it’s happened twice now), and has finally gotten my levels up into the range she wants them in.  

So it has been over just the past few weeks - although I am still holding my breath - that the swimming has started to move my body.  The first emotion I experienced - I saw it’s little red eyes just as they peaked around the corner of the nothingness - was rage. 

It’s funny.  I’d never been so happy to see an emotion - any emotion - before.  And it definitely wasn’t one of it’s muted counterparts - self-pity or resentment or anger.  It was pure, unadulterated RAGE.

This one needs a thick set of reigns I’m afraid.  Because it will, in one way or another, be galloping on through.  The worst thing to do with it, I think, is to try to ignore it, because then it takes off sideways, coming out in small, seemingly unrelated things.

Like butter.

The toast popped up in the slots, each slice blackened along the curves at the top, fading to white through the center, and soft to the touch along the squared off bottom.  I flipped them over and pushed the level back down. 

The timer kept ticking.     

Our toaster isn’t one of those Chinese made gadgets that spreads an even sheen of golden brown over anything inserted for approximately one year before a circuit blows, or a cord frays, or the entire device just quits for no apparent reason at all, rendering it one more chunk for a landfill to chew on for the next three hundred years.  Instead it’s an English made silver box my husband bought used, online, just after we were married.  The thing’s been toasting one edge or another, with unrelenting persistence, for twenty years now.  

The toast popped up.  Now charcoal along the curves.  I hung each slice over the sink and tried to scratch the burn off with a butter knife.  Then I lifted the lid from the butter container and… someone had used all the butter and hadn’t replaced it with a stick from the fridge.

I managed to suppress a sigh.

I lined the toast slices up on the countertop - a couple of which landed in a tiny puddle of liquid, invisible until caught by just the right angle of light - and pulled a stick of butter out of the fridge.  Now realizing the toast was soaking something up - dishwater maybe - I grabbed a plate from the shelf and slid the toast onto it, then peeled long flakes of paper off the rock hard butter stick.

Once I finally got the butter into the container, I sliced off a stiff pat and attempted to spread it over the now cold, soggy bottomed, black toast, which of course tore a hole through the center.

I stopped.  Took a deep breath.  And made a conscious decision not to say anything.  Yet at the exact same time, these were the words making their way out of my mouth…  

“How hard is it to replace the f#*king butter?”

I said it to my husband, Shane, who works 50+ hours per week yet still finds it in his heart to help me - a stay at home mom - get the kids off to school in the mornings.  

He didn’t respond.

Once I finally got toast in front of my kids - half black slices with microwave dissolved grease poured over the tops, I got an entire box of butter out of the fridge, peeled the paper off all four sticks, and put them into a large tupperware container that I left on the counter.  

Shane walked by the container later, put his hand on it, and laughed out loud.  Because this means I’m finally coming back to him.

When I catch something like this, I write it down.  I got mad about the butter.  Then I ask myself why three times.  It’s a silly little trick.  But it usually works. 

Why did I get mad about the butter?  Because when people see that the butter is gone, they should replace it.  Duh.

This kind of answer is always a little red flag.  A pointer.  An indicator.  That little thingy that pops up from the turkey, signaling that it’s time to do something different in the situation.  I mean, sure, I can spin in circles blaming others for my feelings for as long as I want, but this is never where the real answers are.  If I’m really honest with myself about the first why, I know that this isn’t actually about butter.  So I try again to answer the question.

I’m just mad in general.

Why?  

Because the doctor lied to me (fear - doctors are human beings; my life is in the hands of human beings).  I’m weak now (fear - that I won’t be able to take care of my son).  And I can’t even write anymore.  

What if I can never write again?  What if it’s gone permanently?  How will I process it all when my son has to go and live somewhere where he’ll be probably cared for? 

Fear always accompanies rage.  It’s just not always immediately apparent because it hides.  It’s quiet.  Insidious.  Weaving it’s little threads throughout my life while I’m distracted by the little red eyes, convincing myself they wouldn’t be there if people only replaced the butter.

So I’m not really mad.  I’m scared.  Why am I scared?  

Because I had cancer.  

Cancer.  

It took something from me that I’ll never be able to get back.

It isn’t lost on me that Gaaby wrote a screenplay this past year - the one now getting some attention in L.A.  - in which the best friend with the sweet face and lots of blonde hair, has cancer.  I think there’s even a scene in a doctor’s office with a pen and a notebook. 

Maybe it’s just time for me to process it all too.

My book is, for the moment, shelved.  A neglected baby now probably dead in it’s crib.  So I’ve been told by people who’s opinions matter to me very much, to start writing to you again.  To just start writing in this safe, old blog of mine, even if it’s shit writing.  Even if I find the Finding Dory metaphor - just keep swimming - a tad nauseating.  

Because it’s the only way to the surface.