Wednesday, March 29, 2017

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.



Tuesday, June 16, 2015

Exposed



My daughter’s speech therapist had her give a presentation on Autism to her class at school a few weeks ago.  Shane and I arrived a few minutes late, so the lights were already dimmed, and the class was already entranced by Isabel’s power point run down on what Autism is, complete with some of the different ways it can present itself. 

Isabel had asked me for some pictures of our family in the days leading up to this, and had asked me how she should explain the differences between her own Autism (Asperger’s, or, what the psychiatrist prefers to call it now, Pervasive Developmental Disorder), and her little brother, Cale’s Autism (the non-verbal, naked in the sunshine with the exception of a pair of purple, flowery boots on, kind).  And there it all was, spread out on the screen in front of the entire class (although I thankfully hadn’t actually given her any naked pictures of Cale).

Isabel is ten years old now, and is in the fourth grade – a complicated social time for little girls already – so the speech therapist and I had explained to Isabel, as best we could, what it might mean for her to tell her whole class that she has Autism.  Then we left it up to her to decide whether or not she really wanted to go through with it.

When the lights came on again, Isabel opened the floor for questioning.  And she expected questions.  Immediately.  The class, however – an assortment of scruffy haired children in brightly colored, mix matched clothes, and many with names like Sage and Mango and Canyon and Pine Tree (this is Missoula after all, and yes, I am making up Pine Tree, but the rest, I swear, I am not making up) - sat there staring at Isabel as though she was different.

Isabel’s presentation did explain a lot about her.  It explained why she doesn’t always understand all of what is happening.  It explained why she gets so upset sometimes – why she occasionally crawls under her desk and plugs her ears and cries.  It explained why she is pulled out of class for friendship group and counseling, and why she gets all of that extra help with her math.  But I think that the class may have been thinking something else as well. 

Those kids seemed to be examining my daughter for any indication that she realized what she had just done.  And I wouldn’t say that it was a negative examination.  Rather, they seemed genuinely flattened by her unguarded openness, by her guts, and by the fact that she trusted all of them with this.

“Well?” Isabel finally said in her stiff little, monotone way, “What are your questions?”

“Come on guys,” the teacher said, “You can ask anything you’d like.”

One little boy slowly pushed his hand into the air.

“Yes?” Isabel said.

“How old were you when you found out you have Autism?”

“I was four,” Isabel answered, “NEXT.”

A series of muffled giggles rolled through the class, mine included. 

“How old is your little brother now?” one little girl asked.

“He’s eight.  NEXT.”

“And he doesn’t talk at all?”

“No.  But he screams all the time.  NEXT.”

Shane and I glanced at each other, repressing giggles.  It is true that just because Cale doesn’t talk doesn’t mean that he is quiet.  It was also clear that our daughter could use a little work on the finer social graces of question answering. 

This went on for a few more minutes, with equally pat questions and answers.  And finally, the teacher said, “One more question now.”

Three children raised their hands at the same time.  Isabel pointed at the first little boy that had raised his hand.

“I just want to thank you,” he said, “for doing this I mean.”

I suddenly found my eyes filling with tears.

“Me too,” said the other. 

“Me too,” said the third.

“You’re welcome,” Isabel said, shrugging her shoulders and smiling big.

In the days that followed Isabel’s presentation, I kept asking her how everything was going at school. 

“It’s going good, I think,” she said to me one day, “A couple of kids that weren’t my friends before my presentation are friends with me now.”

“That’s wonderful, sweetie!” I said.

“But there’s this one boy (she told me his name) that keeps making fun of me.”

“What does he say exactly?” I asked.

“He says, ‘You have Autism, get away from me!  You’re different!’”

“Oh?”

“And I don’t like that,” she continued, “I don’t want to be different, Mom.’”

“Different, huh?” I said, “Is this the little boy that had the long, blond dread locks, and the avocado green beanie on his head?”  

“Yes.  Why?”

“Just wondering.”

Somehow it doesn’t help my daughter to be told that everyone is different, that it is perhaps the only way in which we are all the same.  She just doesn’t hear it.  So I found myself telling her something else entirely instead.

“When you share something about yourself with people, Isabel, you are giving them a special gift.  You are giving them a piece of who you are.  And it isn’t fair to assume that everyone will love that gift.  Some may even really dislike it, because it makes them uncomfortable.  But there are also always those whose hearts you might touch in some way.  And they are worth it.  And heck, even if there aren’t, so what?  Never let the opinions of others stop you from being who you are, because you are absolutely beautiful.”

“Like you, Mom,” she said.

“What?” I asked, “I’m beautiful?”

“No,” she said.

I think my chin actually landed on my chest.  She giggled. 

“What I mean is you with your book,” she said, “Hey, when do I get to read your book anyway?”

And like a boomerang, my own reasoning came back on me.

*

It has been such a pleasure to write this book of mine, which, at the moment, I still refer to as a baby alien rather than a coherent story.  It’s better than it was before.  It now begins where it should begin and ends where it should end, instead of the other way around.  I have removed pieces that shouldn’t be there at all, and am filling in missing pieces.  And the whole thing seems to be balancing itself out, whereas it used to lean so heavily to one side that I sometimes wondered if I should just let it tip over.  It’s looking more and more human every day, and I must say that the part that has been the most fun has been in allowing other writers into the process.  It has been in the sharing.

This was rather tedious for me at first, because I felt like I was coming to the table a little too late in life – like I was in the bathroom while everyone else was going over the directions, and was suddenly having to guess about things that everyone else clearly already knew.  I thought that there was good writing and bad writing, and that I must learn a whole, new, purely intellectual kind of knowledge to be able to differentiate.  Yet as I have gone along, I have come to believe that there is really no such thing as good writing and bad writing.  Rather, and like anything else I suppose, there is conscious writing and unconscious writing.  There is soul-filled writing and there is dead writing.  

I must say that I don’t think dead writing is always dead because it necessarily comes from an emotionally void writer either.  Rather, I think that cracking one’s soul open with chisel and a hammer and allowing the contents to leak out onto a page, takes some time.  It takes some practice.  And it takes some ego deflation, which means that it also takes a lot of safety and an almost ridiculous overabundance of encouragement.  This is why, while reading each others’ writing, the women in the workshop I am currently attending and I may think, Wow, this reads just a little bit like a book report, but what we actually say is, “I can tell that you love this part and this part, so I would love to see some elaboration those parts.  But over all you are doing a great job!”

It is a dance with the devil. 

I think that the devil, if given the opportunity, would stop a writer’s writing before it ever even really began.  I should probably also mention that the devil I am talking about here is nothing more than ego.

I have only had one chapter, so far, make everyone that has read it very uncomfortable (and this is probably only because no one has read my whole story yet – there are undoubtedly more).  I have also been given some feedback about what to do about this.  And here is how that sort of thing seems to go.  One person says, “Maybe you could give us a little warning, a little something that says the whole story isn’t going to be this dark,” which is of course immediately followed by someone else saying, “Hey, darkness isn’t darkness if you know it’s going to end, right?” 

And it seems like the more people that give feedback, the more, different and sometimes opposing, answers I get.  Things don’t become clearer.  They become less clear.  I went crazy over this for a few days after letting others read that chapter in fact, until I had a friend remind me that the only one I really need to please is me.  And I do agree with this in that I cannot take the opinions of others so seriously that it keeps me from moving forward, yet I believe there is a definite place for these opinions as well.  This is because I believe that the single, largest combatant of self-centered ego is others.

I think my ego sometimes likes to tell me that my story is really good and really important, or that it is really bad and boring and unimportant, while the opinions of others, overall, seem to be telling me that the truth is neither of the above.  My ego likes to tell me that I have to be interesting enough, or clever enough, or whatever enough, to be able to write, while the opinions of others seem to be telling me that I don’t have to be anything in order to be able to write.  And my ego likes to tell me that there is a definition of good (even though no one seems to know exactly where to find such a thing), and that if my writing isn’t good, that I need not bother to continue with it, while the opinions of others seem to be telling me that I need to be willing to look bad just as much as I want to look good – that I can learn a lot, probably need to learn a lot, from both.

It is a dance of energy, if you will, rather than a dance of answers.  It is about keeping a right-sized perspective on something that is still very much out of my control.     

I have a friend that likes to say that over-sensitivity can be one of the greatest handicaps a person can have.  I have another friend that likes to say, “Loving (and loving and writing are synonymous in my opinion) is at least in part about growing thicker skin.”  So that is what I am trying to do.  I am trying to grow thicker skin.  Therefore when I got the comment, “There are parts that are really starting to shine!” on the last chapter I had edited, I did not hear, “Wow, after all this time, this is still mostly garbage!”  Okay, maybe I did for a minute.  But I also let the “shine” part get in.

I was sitting in my writing workshop the other day, looking around at the group of women that I was with – an assortment of women from all different places, all of whom have a fascinating story to tell, and some who are grieving the losses of loved ones, lifelong relationships in fact – women who I have heard say things like, “Oh, who cares whether or not it’s good?  I’m old.  I’m just doing this for fun anyway,” about their own writing, I found myself thinking about my conversation with my daughter again.   

I am sometimes amazed by how grounded these women seem to be.  And I am reminded, yet again, that it doesn’t actually matter whether or not my story is garbage.  It might make people uncomfortable, and/or it might touch someone’s heart.  And it might not.  It is simply a piece of who I am.  And it matters to me that I am writing it down.  It matters to me that I am trying to give a gift.

These women would love my daughter I think.  They would probably tell her to never stop talking about who she is.  So that is what I did, again, later that same day.  I did not tell her, however, that these women would probably also tell her to find that little boy and tell him what she thinks of his dread locks.  I was tempted.  Yes.  But I did not actually do it.

Thursday, January 22, 2015

Head Noise



Anne Lamott says that it is okay to write a shitty first draft.  And that is good because that is exactly what I have done.  It’s just part of the process, I keep telling myself.

I gave my book to a couple of friends to read.  They were so encouraging about it too, until I actually clicked send.  That was when they started saying things like, “Oh, gosh, I uh… I read the first couple chapters but I uh… I just haven’t had a chance to get back to it.  So busy you see, but I have some time next month, and I swear I’m going to hunker down and get it done.”

That is not what I wanted to hear.  What I wanted to hear was, Of course I read it all in two days.  It completely disrupted my life.  I couldn’t eat.  I couldn’t sleep.  I neglected my children.  I couldn’t bring myself to put it down for one second!  When are you writing the next one?”

Then I took the clunky thing to the writing work shop that I am taking.  And after a series of questions about what I have done so far, someone looked at me and asked, “How long is it exactly?”

“It’s at about five hundred and forty pages now (in it I talk about my love for everyone that I have ever known),” I answered, “and it is nearly done.  I have maybe a hundred pages left to go.”

No, no one actually laughed out loud.  One person did look at me, however, and say, “If you send a five hundred page long manuscript to an agent, that person will run screaming in the other direction.  Do you know that?”

“No, I don’t.  This is why I need you.  I am just hoping to get it into a state that my friends can tolerate, let alone an agent.”

I have been trying to read back through it myself again lately, and I have discovered that it really is, in spots, like watching a sloth try to make its way over a branch.  It is like I have some sort of barrier up.  I have created a five hundred pages of head noise; a really long book report of events.  I can’t even stand to read it.

My own overriding complaint is that it is too intellectual.  And yes, I just said that, in it, I talk about my love.  This conflict is perhaps its single biggest problem (although I have been repeatedly told that I am too close to it, that I do not know what its problems are).  You see, my brain is not the thing that is attractive to me about me.  We have plenty of brains in our every-day lives.  We read, and hopefully write, to escape all of that (well, that is the purpose of it for me anyway).  The trouble, with this particular story of mine, is that there are flames involved, and that I am an overprotective mother.  I have finally succumbed to the inevitable however.

Come to find out, encouraging your inner child is not unlike encouraging an actual child.  And I am aware of the redundancy in this statement.  It leaves me with that drippy, old adolescent urge to say, “DUH.”  But when you have tried to keep your inner child unconscious for many years, when you have stuffed a pacifier into its mouth and rocked it back to sleep whenever it has woken up, and then left it in the crib, hoping, always hoping, that it doesn’t stir when you trip over a toy on the floor on the way out of the room… hell, when you cannot even stand the words inner child, when they leave that strange old, stain on your tongue, and leave your skin trying to creep off of its own body, when you would just as soon such a thing had never existed in the first place, it feels a little strange to be creeping to the crib in the mornings and poking it on the shoulder.

“Psst.  Are you awake?  I have lollipops.  Can I get your help with something today?”

The main problem with a child is that she is not going to sit down calmly and quietly at the dining room table, and do whatever it is that I am asking her to do.  I wish she would.  I wish that she would sit there attentively and let me interview her.

“And how did you feel when this happened?”

“Well, Miss Jessica, I felt happy.  Thank you for asking.”

“And thank you for answering.  You may go back to your crib now.”

No.  She doesn’t sit still at all.  She runs around the room, tearing up paper and coloring on the walls, and making pictures on the table with smeared yogurt.  She won’t talk at all for long stretches of time.  I watch the clock and wait as patiently as I can, I have other things that I should be doing, you know.  And then, when she does talk, she talks to herself while smearing the yogurt; in long, incoherent spurts that I then have to try to record and decipher.

Then there’s the teenager - oh, don’t get me started.  She will ramble on and on.  After awhile I finally look at her and say, “Jesus, how did anybody ever tolerate you?  Oh, that’s right, they didn’t.  How did I ever tolerate you?  Oh, that’s right, I got you drunk all the time.  No wonder you can’t remember much.  No, I cannot give you a beer.  Sorry, please try to continue.”

This is how you do it?” I find myself thinking, “Really?” 

The re-writing that I have done in this way so far, however, has gotten some beautiful responses from my writing group, from people that don’t even love me.  So I just keep doing it, even though it is messy and unpredictable, and even though it leaves me with no way of knowing when the project will be completed.  I am obviously not getting any cooperation today though, so I thought I would take the opportunity to throw an update onto the blog.  I am off to get prescriptions filled now.