Red Sky

November 13, 2011

Sirens wake me this morning. 

I roll over, press my stomach into  the concave of Steve’s back, put my arm around his chest.  Sadie jumps up on the bed, looking for a spot between the two of us.  Not finding one, she settles herself in the cradle made by my bent knees.

A chorus of sirens. 

The neighbor’s dog barks. 

I try to settle in.  Go back to the amniotic dream world I was warm in --no sirens--no barking dogs.

          “Red sky in morning, sailor take warning.”

I feel it first, before the thought fully forms.

Where did that come from? 

Yesterday morning, the sky was brilliant shades of red to sherbert. 

There were no sirens.  The neighbor’s dog was quiet.

Between then and this morning lies the passage of 24 hours.

I cannot fall back to sleep.   I wonder what color the sky is this morning.

Quietly I disengage myself from Steve, from Sadie.  I do not want to wake him. 

I close the bedroom door, descend into the living room, through the dining room and into the kitchen.  It is raining.  The sky is gray.  There is a flock of dark eyed juncos in my garden eating Echinachea seeds, scratching the ground beneath lettuce dying, gone to seed.  I stand and watch them eating breakfast.  Ponder the precise placement of colorings--black hood, pinkish sides, white /buff belly, white outer tail feathers.  Each one looks like a painted ornament—except they move.   Stella is crouched next to me, huntress, still except the tail hypnotically swishing back and forth.

I empty yesterday’s grounds from the gold toned coffee filter, fill it with  fresh coffee.  I put cold, fresh water in the carafe to the eight cup mark and poured it into the reservoir.  A flip of the switch.  I let the smell of fresh brewing fill my nostrils.

The dishwasher is full of dinner plates, serving dishes, silverware.  Remnants of dinner last night.  I flip the latch, push the button for pots and pans, hear the sound of water running.

While I wait for coffee, I sit at my computer, type in the words, “red sky in morning” wanting to know the origin of the phrase. 

A reddish sunrise, caused by particles suspended in the air, often foreshadows an approaching storm, which will be arriving from the west, within the day. Conversely, a reddish sunset often indicates that a storm system is on the east side (opposite the sunset), travelling away from the viewer. A similar movement is noted all around the world, in both the northern and southern hemisphere.

There are occasions where a storm system might rain itself out before reaching the observer (who had seen the morning red sky). However, for ships at sea, the wind and rough seas, from an approaching storm system, could still be a problem, even without rainfall.

For ships at sea, an approaching system could still be a problem, even without rainfall.
Sirens in the distance.  Dogs barking. 
A small file folder with your name on it in a box beside my desk marked “Andrea Record”.  I pull it out.  Open it.

FORM 2808,

REPORT OF MEDICAL EXAMINATION

ORTIZ PETERSON, ANDREA

AGE 21

SUMMARY OF DEFECTS AND DIAGNOSES:

NONE

PURPOSE OF EXAMINATION:

Civilian Job Misc.  Deck Hand

DEPARTMENT OF THE NAVY

MILITARY SEALIFT COMMAND, ATLANTIC

MEDICAL DEPARTMENT

NORFOLK, VIRGINIA

OCTOBER 29, 2003

10 Nov 2003  MSC sent medical reviewed.  Cleared.  Fit for military.

Fit for Military.  Fit to be an able bodied sea woman on a ship.  Fit .  Healthy. 

There is a file with your handwriting.  Medical Baseline.  When you were fit.  Healthy. 

Before the sirens.  Before the dog barking.

Before the red sun rising on the eastern horizon.

Red sky in morning.  There are few things more beautiful.

Date of Registration:              01/08/2005

Requested Examination:      MRI-HEAD, 1.5

Patient Name:           ORTIZ-PETERSON ANDREA

Age/Sex:        23 / Female

MRI OF THE BRAIN

Findings:

On the T-2 weighted images, there are foci of hyperintensity seen in the periventricular region and the deep white matter bilaterally.  The distribution is asymmetrical.  In the right cerebral hemisphere, the largest is located just adjacent to the posterior aspect of the body of the right lateral ventricle.  Within the left cerebral hemisphere, the largest is located in the region of the left sensori-motor cortex…

Comments:

Foci of hyperintensity are demonstrated in the deep white matter bilaterally.  These are rather nonspecific, but would be keeping with the appearances of Lyme disease.

Note the presence of focus enhancement in the region of the left sensori-motor cortex and this enhancement is circled on the image of page 6.

12:32:13 PM.

I do not know what any of this means.  Periventricular region.  Left sensori-motor cortex.  Keeping with the appearances of Lyme disease.
Lyme disease. 
I Google it again.  As I have many times since January 2005.
http://www.thehumansideoflyme.net 
I click on that. 
The Human Side of Lyme – An Inhumane Disease of the Brain       Page 1 of 10.

“…physicians are often surprised to learn that persistent Lyme disease is outstandingly a disease of the brain as well as involving one or all components and subsystems of the entire nervous system.”

It is Sunday morning.  Steve and I stayed up til 4 a.m.  playing Scrabble.  Trying to make words from bits of tile.  Trying to read the subtitles on an Italian movie.

The sirens pass.  The dogs quiet.

I continue to read your Military Sealift Command medical file.

SENTARA Progress Notes 

2/7/2005

Chief Complaint – Facial Numbness

History of Present Illness – 23 y/o WF with recent diagnosis of Lyme disease but no other significant prior medial history presents with new facial numbness. On January 27^th patient cut her right thumb and went to the ER due to numbness in right thumb.  They sent her with referral to a hand surgeon.  When she went to the hand surgeon she was experiencing right hand numbness in the distribution of median nerve and was diagnosed with carpal tunnel and sent to neurology.  An EMG was performed for her carpal tunnel and came back normal.

Red storm in morning.

The carpal tunnel came back normal.  Healthy. 

An approaching system still could be a problem. 

Read on.  It is quiet here.  Steve stirs upstairs. There is no sign of Sadie.  She is curled up next to him.

Stella is stealing shells from the basket on the table behind me.  I do not stop here.  It is a game she and I play.  She hides them from me.  I put them back in the basket.  She takes them out and hides them again. 

At that time blood was obtained and patient was diagnosed with Lyme disease.

The patient was diagnosed with Lyme disease.

The patient, Ortiz-Peterson, Andrea, 12/31/81, age 23, female.

My daughter.

Was diagnosed.

With Lyme disease.

The Scrabble game is still out on the coffee table.  All the tiles forming words that are connected, but have no connections.

Seven.

Hair.

Rose.

House.

Quiet.

Seven.

I taught Steve how to play Yahtzee  last night.  How you think the point of the game is to score a Yahtzee—5 dice, each with the same number of little black dots.  But you have to strategize.  There are other boxes that need to be filled in, Full House, Small Straight, Large Straight. 

Calculations of probabilities on a cellular level. 

“Sixes.  Sixes. Feel those sixes.”  I shook the blue cup.  The dice rattled noisily inside.

Steve laughed.  “I see.”  He said.  “You think you can control the dice with mental telepathy.”

I smiled.  “Exactly.”  I said as I rolled out the 5^th six and yelled out Yahtzee.

“You are a funny girl.”  He says, as he takes the cup.  Rolls two fours.

“Put everything back in the cup except the fours.”  I told him.

“But why the fours?”  he asked.

“Because I feel the fours.” I answered as I picked up the  one, three and six dice and dropped them in the blue cup he held.

“But wait…”  Steve protested.

“Trust me on this,” I told him.  “Feel the fours.”

The dice rattled in the cup.  He threw them out on the table.  Even before they were full rested on the table , I could see.

“Two more fours.”  I was triumphant.  “Feel those fours.  Take the three, put it in the cup.  Roll again.  You never know.”

It was a two this time.

“Now what?”  you asked. 

“You have options.  You can take 16 points on your fours.  Or you can take 18 points on your four of a kind.”

And the patient was started on Doxycycline on January 26^th.

The patient.  Andrea Ortiz Peterson.  Age 23.  My daughter.

On February 5^th patient experienced right face numbness.  No history of camping, no tick bites, no rash.  Extensive travel in Middle East with Navy.

Returned on November 15, 2004. 

November 15, 2004.  Three days from now, seven years ago, I was supposed to meet your ship.  You got in early.  Surprised me at the airport. 

“There’s my mom.”  You told your boyfriend, your first boyfriend, the boyfriend I was to meet for the first time--after you spotted me at the end of the concourse. 

“Where?”  Scott asked, searching the crowd of all the recently disembarked passengers.  “I cannot make out the face of anyone in this crowd.”

“Look.”  You told him.  “Look for the brightest thing in the crowd.  That is my mother.”

Yahtzee.  I felt the fours. 

My daughter could pick me out of a crowd anywhere.

You flew home to Washington with me for the holidays.  You and I went to Waikiki for a week.  Went diving, snorkeling, shopping.  Walked the beaches.

Searching for shells.

December 2004. 

A red sky is beautiful if you have no idea its meaning.  When the forecast of the storm has not been made by weathermen yet.

February 7, 2004.  Doctor’s Impression.  Recent Lyme Diagnosis.

I hear the tags on Sadie’s collar jingle as she jumps off my bed.

I hear the toilet flush upstairs. A cough.

I am feeling the storm approaching from the west.  The  red sky.  The emergency behind the sirens.  The barking dogs.  ad

There is nothing I can do to stop it.

There was nothing I could do to stop it.

Even feeling the fours, I had no idea, really what the final outcome would be.

It is time for another game of Scrabble.  I am going to go jumble up the tiles. 

I am going to form new words today.

Connected.

The subconscious.  Enhanced areas of hyperintensity. 

Seven.

November 2007.  You were healthy.  I met you at the Norfolk airport.  I met your boyfriend.  You could pick me out of a crowd anywhere.

Seven years later it is Veteran’s Day weekend. 

Seven years later all that remains of you is the name I gave you Andrea , referred to as patient in  these medical records I try to piece together like a puzzle.

House.

Quiet.

Rose.

Supine.

Supine.  Adjective.  Lying on the back with the face upward. Synonym.  Inactive.  Passive.  Idle.

It is Sunday.  Steve is up now. 

Another game of Scrabble.

I feel the words forming.

I feel you.

                                   Love,

                                   Mom

Random Thoughts

November 6, 2011

Random thoughts.  They are like pop ups on my computer screen.  They distract me from the stuff I am supposed to be focusing on.

Jingle Bell Run.  Every time I log into Facebook this past two weeks, there is a post about the Jingle Bell Run. 

Every morning in November 2004 you would put on your tennis shoes, push the ipod speaker buds into you ears and head out for a 2 mile jog on the country roads in Rochester—training for the Jingle Bell Run.  I’d drive by you on my way to work. We would wave to one another.  November 2004 two months before you found out you had Lyme disease.  Two months before you had a needle stuck in your spine.  Two months before you would call me from the isolation unit at the Emergency Rooms somewhere in Norfolk--the doctors suspected meningitis.    

Norfolk.  And why do I keep getting information about Norfolk on my Facebook page.  It isn’t a common city name like New York or Boston or San Francisco-- Miami.  How many times did I fly in and out of Norfolk International Airport to visit you?  And leave one week later, waving and smiling at you from the curb outside the departure gate for American Airlines—only to become a walking waterfall of tears as soon as I turned away.  Some child would invariably see me as I attempted invisibility, privacy in my state of outright sobbing.   

“Mommy, why is that lady crying.”  She would ask.

Mommy would grab the child’s hand, pull her into her.  Whisper something into the child’s ear I could not hear.  

You never knew how much I cried for you.

Veteran’s Day.  Specifically, Veteran’s Day 1981.  The year I was your sister’s Blue Bird troop leader.  Every Tuesday, seven little girls gathered around my kitchen table for a Blue Bird meeting while you tried to stretch and turn inside my growing womb.  Safe within my belly, you listed to muffled sounds of horse hoofs, marching bands, the calls and tapping shoes of drill teams, honking horns as I led my troop of six year old Blue Birds in a parade down Main Street, in Auburn, holding a banner honoring veteran’s, they had painted with bright poster paints.

Tortillas.  Maybe I should make flour tortillas tonight.  Your favorite.  Form the little balls of dough, roll them out, cook them on a cast iron grill.  The smell of hot flour and lard and baking powder.  Can you smell them where you are?  

All week long I have been presiding over a hearing.  Trying to ferret out the truth of the matter from bits of evidence elicited by series of questions.  It is my job to find the truth in opinions, conjecture, each side’s recitation of the facts from their perspective. There is only one person knows what really happened.  That is the Appellant.

These decisions, this deciding, weighs heavy on me. 

I need to get it right. 

Hospitals.  Good Sam, St. Joe’s, St. Pete’s.  We were on familiar name basis with all of them. 

I feel it starting in my belly, wrapping itself under my ribcage pressing out.  The pressure is overwhelming.  It pushes up through the middle of my chest, rests there—collecting, building.  I am afraid to release it.  Afraid it will cause destruction.  Break windows with the sound of it, rattle ground with the physical intensity of it.  That it will flood and change the course of shorelines.

No body can contain this. 

I feel the slow release.  A leak.  It seeps out a little at a time.

Last night I read you Mercer Meyer’s When I Get Bigger before I went to sleep.    I read bedtime stories as much to myself, as to you.  Falling asleep I thought…

“When I get bigger my daughter will die when she is 27 years old.  Everything I thought I knew, will become unknown.  There will be no order to anything.  There will only be degrees of this rising up of feeling collecting in my belly.”

I wish that story could be rewritten.  I did not like the ending.

My throat constricts, the last defense against this physiological, emotional event.

There are no instruments to measure this.  Only I feel the force, the destruction, the exhausting cleansing from this.

Talk to me, I will respond.  I will smile.  I will laugh. 

I will seem normal.  

But I am invisible.  I cannot scream.  I cannot walk around with rivulets carving waterways across my cheeks, dripping from my jaw line, onto my breast bone, down my breasts collecting like the leakage of mother’s milk.

My grief is as private as your conception.

It is Saturday.  I am alone.  The sun is shining.  There is blue sky between bare branches.  Great pools of brown, gold leaves break on frosted green.  It was 32 degrees this morning.

I am leaking. 

I am remembering.

I am not blocking.

Doctors.  All the king’s horses and all the king’s men couldn’t put Humpty together again.  They all have an opinion about Humpty’s fall, what injuries he sustained, what illnesses he suffered from—whether he can be put back together again. 

It all depends on the diagnosis.  There from flows the treatment.  If there is no diagnosis, if there is disagreement about the diagnosis, the patient continues to suffer.  Morphine infusion to alleviate the pain while a doctor forms an opinion.  Luck is when there is a definitive diagnosis.  That everyone can agree on.

That was the problem.  The disagreement.  And all the while, you laid in a hospital bed, pumped full of morphine and dilaudid while the doctors argued about your diagnosis.  Multiple Sclerosis.  Lupus.  Lyme Disease.

Lyme Disease.  You were a patient caught in the controversy of its existence and its treatment.

A six week course of antibiotics.  You will be cured.  That is the majority opinion.

February 2008.  A call from St. Joe’s Emergency Room.  They did a spinal tap.  You had meningitis.  More plaques on your brain.   A disease was progressing.

This was my first lesson in hospitalists—the doctor in charge of your care when you are admitted to the hospital.  He is not your doctor.  You did not choose him—or her.  The hospital and schedule of a doctor’s rotation determined your doctor for you.  He can choose to listen to your treating doctor.  The doctor you see on a regular basis.  Or not.  He, or she is taught to look at everything and make his own diagnosis. 

Two words come to mind.  Pompous and ass.  Your hospitalist at St. Joe’s.  He did not “believe in” Lyme disease.  Refused to do any research on it.  His mind was made up. 

The infectious disease specialist he called in did not believe in Lyme disease either.  She determined you had to have multiple sclerosis or lupus and wanted to do further testing. 

You’d been through all the testing.  You had a positive titer for Lyme disease.

The infectious disease specialist--you could not have Lyme disease.  You had a six week course of antibiotic treatment.  She would not buy the argument that Lyme disease is often misdiagnosed as Multiple Sclerosis, as Lupus.  She had formed her opinion.  There would be no further consideration of other evidence. 

While you argued with the infectious disease specialist about your diagnosis, the hospitalist pumped you full of morphine and dilaudid.  You begged him to talk to your Lyme doctor in San Francisco.  He was not going to consider the opinion of a doctor in another state—no matter his credentials.  No matter his purported credentials and years of treating Lyme disease.

The Lyme doctor said you needed antibiotics.  You begged for antibiotics.  I begged for antibiotics.  I considered smuggling them in and letting you administer them to yourself behind the locked door of your hospital room bathroom.

It was the hospitalist’s opinion you needed to accept his diagnosis, based on the diagnosis of the infectious disease specialist.  Based on her opinion.

Challenging the medical profession from a hospital bed, or as the mother of a sick child is never a good idea.

They drugged you until you almost stopped breathing.  I sat by your bed and jostled you, put my hand on your chest to feel it rise and fall, dug my finger tips into your wrist, feeling for a pulse.  Afraid every breath could be your last.

How is it possible to live with this?  This memory of the slow death of you I could not see, but felt as surely as those first butterfly movements you made inside of me..  I would talk, you would talk, few doctors would listen.  The mind was already made up.  Within their knowledge, their frame of reference, they had formed their own opinion.

When I could wake you, I made you do laps around the hospital floor.  I checked you out to take you to the cafeteria, the gift shop where I bought you magazines and Soduku puzzles you could not stay awake long enough to read or do.

Morphine.  Dilaudid. 

Perhaps if I take an Ativan right now, I can quell the energy seeping up my throat, forming sound.

It was a standoff.  You would not buy into their new diagnosis of Multiple Sclerosis, Lupus.  They would not buy into yours, of Lyme disease.

Even though your head was pounding with the hooves of bands of wild, running horses, the hospitalist wanted to get rid of you.  He wanted you off his rotation. 

You were no longer a patient.  You were a plaintiff—he a defendant in a potential lawsuit.

No other hospital wanted you as a transfer.  You were trouble.  You were disagreeable.  And then there was your mother.

“We believe your daughter is an addict.”  The doctor told me.  “She exhibits drug seeking behavior.”

This, after he had been pumping morphine, dilaudid in your veins for seven days. 

This, after days of begging for antibiotics you knew would stop whatever inflammation process was going on inside your brain.

“Excuse me!?”  I was incredulous.  “Whenever I am here, which I may point out, I almost live here, the only thing I have ever heard us beg for is an antibiotic.  An antibiotic you refuse to give.  I do not know many drug addicts that are coming to the hospital seeking antibiotics.”

You stirred in bed, riveting the doctor’s attention from our conversation.  He and I watched as in you laboriously sat up, turned and put your feet over the side of the bed.  You tried to speak.  Nothing you said was understandable.  Your words all slurred together. 

“Look at her.”  He pointed at you contemptuously.  “She is nothing but a drug addict.”

It was all I could do to keep from pulling his hair, gouging at his eyes, kicking him in the groin.  The only socially acceptable response existed in words.

“For the past seven days you have written every prescription for pain medication.  You have had drugs brought up from the central pharmacy, authorized the nurses to pump my daughter’s veins with two highly addictive pain relievers.  My daughter can barely breath, can barely move you have her so drugged up.  And you dare to call her a drug addict.”

The doctor left the room.  The nurse came back with discharge papers.  And written prescriptions for morphine and dilaudid.

Three weeks later.  A call from the ER at Good Sam.  Clots in both your lungs.  A week’s stay in the Critical Care Unit.  A hospitalist that accepted the Lyme diagnosis.  Treated you accordingly.

St. Joe’s.  This is where the cycle of ER visits, hospital stays began. 

This is where the constant battle began.  Multiple Sclerosis.  Lupus.  Lyme Disease.  Each doctor with his/her own opinion.

You with yours.

Me with mine.

And always the shots of morphine, dilaudid.

There is nothing that eases the pain of this. 

Pop Ups.  The ones I can see on my computer.  The ones that flash across the inner workings of my brain. 

I have to let this grief be heard.  I have to give it a voice.  It is stuck in my throat, lays heavy out across my shoulders, pins me to this paper.  I feel a sharp tingle in my nose.

My grief has its own words.  The only socially acceptable response. 

And even words sometimes, are difficult to read or hear.

Focus.  Ignore the pop ups. 

It is time for me to take a walk with Sadie.  I know a place where I can let this all out.  I can scream as loud as I want.  The squirrels and the birds will stop and listen momentarily, determine I am not a threat, go back to what they were doing.  Once in awhile, one will answer—call back to me.  The trees and fallen leaves will absorb some of the energy of this. 

Doctors.  Shots of morphine and dilaudid.  You laying in a hospital bed.

Fighting.

For a definitive diagnosis.  One everyone could agree on.  One there was a course of treatment for. 

One you did not have to fight about with each new doctor that you saw.

I love you Andie.  You were much braver than I could have ever been. 

                      You are always in my thoughts—Mom.

El Dia de los Muertos

October 31, 2011

Dear Andrea,

When life gives you rotting bananas, make a banana cake.  From scratch.  Let the smell of sugar, flour, shortening, eggs all  baking in 8 inch round pans fill the corners of your house and wrap themselves around your heart.  When the cake has cooled on a wire rack set on your counter top, and the smell of baking becomes a memory, pull down a box of powdered sugar, a bottle of vanilla, take the real butter you set out on the counter earlier and make real butter cream frosting.  With real cream.  When the cake is frosted, stand back, admire your work.  Then take the beaters and the bowl, sit on the kitchen floor with your back against the cupboard door and lick the frosting from each beater blade.  Run your index finger along the inside of the glass bowl and suck the sweet taste of frosting from it.

It is Halloween.  The beginning of the holiday season.  Thanksgiving.  Christmas.  New Year’s Eve.  Your 30^th birthday.

Tonight I do not need a costume.  I am La Llorana, the Weeping Woman who is ageless and faceless.  Whose wailing can be heard on a rainy windy night.  She is the sound of grief—faceless, ageless.  She is a condemned woman.  And at same time she is a goddess bearing a message. 

I wrap my tongue around a single silver beater blade.   Let the frosting melt in my mouth.  Let the flavors linger before I lick the next one. 

Tomorrow I am going to begin “celebrating” a holiday that will be new to me.  El Dia de los Muertos.  The Day of the Dead.  An acknowledgement of your death and a celebration of your life—and of mine.

Tonight I will pick yellow marigolds from my garden and put them in a glass of water.  In the morning, I will set them on the dining table with photographs of you.  Your letterman jacket will drape across the head chair.  I will put out a glass of water and small bowl of salt. 

Tendrils of lavender incense will carry my thoughts to you.

When I come home from work tomorrow night, I will make a feast.  Plates full of your favorite foods.  Posole, home made flour tortillas, refried beans, chicken enchiladas.  You and I and Sadie will be the only guests at our candlelight dinner.  No one will eat.    

For dessert, home made banana cake with buttercream frosting.

Tonight it is Halloween and  I am La Llorana with a bowl of tiny Snickers, Twix, Peanut M&M’s for the constant parade of Trick or Treaters that ring the  doorbell.  I will admire their costumes, make small talk with their parents.   I will be with my friend Ami and her daughter Sahara.  Tonight I made a feast for the living.  We will laugh and eat at Ami’s table.

It is the beginning of the holiday season.

Tomorrow I will make offerings of water, earth, wind, fire.   The Day of the Dead.  I will turn off the phone, the computer, lock the front door, sit with my memories of you illuminated by candle light. 

In solitude my grief is raw, powerful.

I am La Llorana. 

I am a condemned woman.

I am a goddess of many things bearing a message searching for words.

Sitting on the kitchen floor licking frosting from the tip of my index finger.

                     Happy Halloween—Love You

                    Mom

  

Halloween Party

October 29, 2011

Hi Andrea,

The weather report said rain.  All day. 

But the sun is shining, reaching through my front window, stretching across the oriental carpets and maple floor, across the desk, ending at my keyboard.  My living room is filled with light.  It invites me out.  To play.

JR ESTATE SALES OCTOBER 29 & 30 - 10-4PM Dining room table/chairs, china cabinets, lamps, recliner sofa, lift chair, 5 twin beds, queen bed set, loveseat, end tables, computer desk, lots of glassware, kitchen misc, linens, upright freezer, tool chest, some tools, medical equipment & more.

Estate Sales.  You’d think I’d shy away from these.  Searching through the remnants of a life for some small treasure I can bring to mine.  They are the highlight of a Saturday.  Cup of coffee in hand, I look through kitchen ware in search of old  pitchers, flour sack hand towel, glass bowls.  I search for hand embroidered pillow cases, cloth napkins, table clothes.  I search the bookshelves for cookbooks and entertaining fiction.  Sometimes, in the closets, I will find a blouse my size, a coat, a scarf, a hat.  Often, I come away with nothing but a sense of whose pieces of a life I have just been privy too.  Those things they left behind.

Steve is upstairs showering now.  I hear him humming. 

Music.  The sound of his contentment.

Estate Sales.  I am never sure what I might find.  I just know I need it when I see it. 

Halloween is Monday. I have not been to a Halloween Party since I was seventeen years old.  Steve has not been to one in ages either.  He has some story about a Halloween Costume Party he went to in the 70’s that was pretty wild.  He and I have been agonizing for weeks about our costumes. 

Last night we went shopping.  Goodwill, the Halloween Store, Spencers, Claires, Wet Seal.  You would love what we came up with.  He is going to me my pimp.  I am going to be is “ho”. 

It is fun to be outrageous. 

At Wet Seal I saw a little black tube skirt in the window. 

“Let’s find a salesgirl.”  I told Steve , as we entered the store.

Just about that time a young Asian woman in her early twenties, Marcia, asked if she could help us.

“My girlfriend here is looking for a Halloween Costume.”  Steve volunteered.  I was just going to ask for the little black skirt on the mannequin in the window.  No explanation needed.

Marcia turned to me, all perky with her salesgirl smile.  “So,” she asked, punctuating the so, “what are you going to be.”

I wasn’t quite prepared to answer the question, and my brain would not work fast enough to make up a lie.  “A  ‘ho’” I answered. 

The truth was priceless.

When she recovered, she got excited.  “That is so cool.”

I am now the proud owner of a black piece of elastic with a zipper up the front that I hope will cover all my naughty parts.  Some black high heel boots, fish net stocking, big feathery earrings, enough bracelets for six women.  I be stylin’. 

You would be proud of me.

I am not the mother you left behind.

Death changes things. 

Redefines. 

Refines.

Why am I 56 years old and experiencing all of this as if it were the first time? Sometimes it is.  Sometimes it is the first time in a long time.

Marriage and motherhood took much of me.  Always, there was a fight to claim some small piece of me for myself.  Everyone, and everything had first dibs on my time.  When I took a second to ask what I wanted, someone else’s needs took precedence over my own.  I did not know how to set boundaries.   I am learning now.  The agony of saying no.

Guilt I already knew.

But not today.  And not tonight.  Tonight I am going to a Halloween party as a ‘ho’ with her pimp.  I will be carefree and outrageously slutty.  I will laugh and dance. 

I will claim that small piece for me.

Release.  Relinquish.  Redine.

              Love You Andie-Hope you like the photo.

              Mom 

Autumn

October 25, 2011

Autumn.

It has always been my favorite time of year.  The days grow shorter.  Trees are dazzlingly brilliant.  Nature prepares itself for hibernation.  Protection from the temperamental  whims of winter. 

Tonight I hurried home.  There is nothing like a walk when my breath makes ghosts that lead me forward.  It is a clear evening.  I want to see Mt. Rainier, to stand in awe of this mountain that is bigger than me.  That was here before I was born, and will be here after I die.  It is the false promise of permanence I crave. 

There is no promise that cannot be broken.

I love Wikipedia.  Mt. Rainier is a stratovolcano.  Dormant now, it could blow at any time.  It is considered one of the most dangerous volcanoes in the world. Because of its large amount of glacial ice,  this mountain that looks postcard picture perfect has the potential of producing massive lahars that would threaten the whole Puyallup Valley.  That would level everything in its path.

I tried to stop my medication.  The pills that keep me from crying in Starbucks because I have to wait for the barista to make my latte.  The pills that make it so I can sleep at night.  The pills that keep me from buzzing like high tension electrical wires. 

I never needed medication, for anything.  Until now.

Quitting made me crazy.  I am not ready yet.  I accept the fact I may never be.

Just as I am starting to accept the fact you will never be alive again. 

Tonight, back from my walk to Overlook Park, I sit here at my computer writing you this letter.  Stella is into something on the table.  I have a basket of shells I brought back from Whidbey Island.  They are there to remind of the beach and solitude.  I find comfort in feeling the ridges on the outer shells of the cockles contrasted by the cool smoothness of the inner shell.  Of feeling the roundness of the moon snails, big as apples, and reaching my index finger as far as I can into the inner chamber.  Of studying the different patterns and colors on the periwinkle shells.

When I turn around, Stella jumps off the table with a white cockle shell in her mouth.  She drops it on the hardwood floor, bats it till she scores a goal under the legs of the oak table.  I’ll pick the shell up later.  Put it back in the basket.  Stella will find another one she likes.  This is how she entertains herself.  Playing with the pinecones I bring back from the forest, shells I bring from the beach. 

I am gathering things for winter hibernation.  Pressing red, yellow, orange leaves.  I want to remember everything I have been trying to forget. 

Because that is what I need to do now.

Tonight I stood on a hill, looked out over the blue waters of Capital Lake, the dome of our state capital, the city of Olympia and the mountain. 

A mountain that rises quietly, majestically from the earth, fills the horizon, as magma forms and rises in places invisible to the eye.  When a critical volume of magma and gas accumulates, the obstacle (mass blockage) of the volcanic cone will be overcome, leading to a sudden explosive eruption.

My heart beats wildly.  There are things that I can learn from this.

Those things I learn, I can share.

Tomorrow night, I will have dinner with a friend.  It is something to look forward to.  For now, it is time to feed Stella her Fancy Feast—Sadie the leftover pork, potatoes and carrots in the fridge.  Fold a load of laundry, first burying my nose in nightgowns and t-shirts warm with the scent of lavender from Downy dryer sheets.  Then to bed with the latest copy of  O magazine and a cup of licorice spice tea.

And thoughts of you.

                      Love You Andie-

                      Mom

  

Forest Bathing

October 24, 2011

Hey—

Did you know there is something called forest bathing?  In Japan, it is called Shinrinyoku.  Business men don their suits and stand buck naked in the forest, breathing in the essential oils from surrounding trees. 

Yesterday, the sun was illuminating the big maple in Steve’s back yard. It was golden. 

“Hey, let’s but on our hiking shoes and go for a walk.”  Steve suggested.

“O.K.”  I was game.  “Where?  Maybe we should drive to the trails on Tiger Mountain.”

“Seems silly to get in the car to go for a walk.”  Steve answered.  “Let’s hike up the hill at the head of my driveway.”

“I’ve been up there a number of times.” I answered.  “Nothing up there but power lines.”

“There is DNR land up beyond the well house.  90 acres of it.  Lots of trails.”

The trek to the top involves a long, narrow road that leads to several houses.  I haven’t been exercising like I used to before you died.  I was embarrassed by how out of shape I have become.  Pride kept me from stopping to catch my breath, so when we reached the top, I was shaky.
 
As we crested the hill, we turned right, onto a gravel road.  Sadie was with us.  After we walked around the locked gate, I unclipped her from her leash, she looked at me, I told her “Go on ahead.”  Tail wagging, she led the way. 

“You’ve been holding out on me.”  I teased Steve.  “How come you never told me this was here?”

He just smiled.  Then took my hand as we walked in the autumn woods.  Silent.  Listening.
Enjoying this brief respite before the holidays and all the memories they will bring.

The gravel road ended at a well house.  From there, small foot trails branched off, like smaller streams that feed a river.  We climbed a berm and took the middle trail. 

Lush.  The only sounds the whisper of falling leaves, bird calls, and a squirrel who scolded us for coming into her backyard. 

“Listen to the echoes.”  Steve invited.

I did.  And then I made my own.  Whooping, laughing, I caught the echo of my heart opening.

I handed Steve Sadie’s leash.  I took off my t-shirt, handed it to him, then opened my arms to the trees, the ferns, the smell of leaves decomposing.  Felt a cool breeze wrap itself around me.
 
“I am walking with my shirt off until we hit the road again.” I told him as I moved ahead of him on the trail, arms open wide, then arms above my head.  I wanted to soak as much of this air into my skin as possible.  It felt like something magic.

Forest bathing.  Shinrinyoku.

A return to something primal inside of me.  I find a place I must return to.

A place I can draw strength from.

                                    Love you and miss you,
                                    Mom

Dancing Shoes

October 22, 2011

Red patent leather open toed 3 inch heels, a micro mini black skirt and a blonde wig (that is unless she is blond already—then she could just go with the heals and the micro mini).  Several things every woman should experience at least once in her life. 

Today, that would be my advice to you.

Took me 56 years to learn that. 

And at least 6 years before I wore those red patent leather shoes with the 3 inch black heels.  I put them on last night, the first time they have been on my feet since you sent them to me for my 50^th birthday.  The spring you got back the results from your Lyme disease titer.

I am going to dance tonight.  In my red heels, in my little black skirt and I’m going to be blonde.

If you had not died, I would not be here, sitting on the end of Steve’s bed, getting ready for a night on the town with him.  In these heels you bought me and I have never worn. 

And I’ve been thinking a lot, lately, about this letter that you wrote on MySpace in April 2009. 

…………………………………….

I saw a post on a Lyme support board that got to me... I realize that not everyone knows exactly how extensively Lyme disease has affected me, and I can't believe I'm going to just put out there for all to read what I've gone through, but maybe it'll help someone... Maybe it'll make a difference... Maybe the next time I'm down someone will recognize the signs, print this out and march me into the hospital... I don't know what will come of this... Maybe future employers will find it and choose not to hire me. Maybe my retirement will be effected. The fact of the matter is, it's too much to continue to hide from my friends.

Know that these feelings do not define me as a person on a daily basis, just as the disease I am plagued with does not define who I am... It is a constant battle that I fight trying to be who I want versus who Lyme has made me, but it's a battle I am determined to win. Those of you who know me, know I am way too strong to let something like this shape my life.

All that said - here you go (keep in mind this is the answer to a question about whether or not other patients have thought about suicide).

"I sure haven't been posting as often as I used to, but that's because there have been a myriad of changes in my life...

Lost loves, never ending hospitalizations, a swift downward spiral into self-destructive behavior...

I've been there. I think my first attempt was in June of 2006. My boyfriend at the time walked in on me at the kitchen table with a knife, an empty bottle of pills, and a half-eaten bean burrito. I learned then exactly how to manipulate the mental health professionals into believing that I was fine.

For years now, that's what I have done... I get really sick, begin to shut down, attempt self harm or suicide and wiggle my way out of situations. If I can't wiggle out right away, I offer to go in for evaluations voluntarily, knowing that at some point I'll find the weakest link and be able to manipulate my way out of the situation.

One mental health professional actually recognized what I was doing while I was inpatient, and still discharged me.

I don't lie anymore. When I'm having a Lyme fit, I get in my car with various bottles of pills and drive... I call select few who I think can help me - because I do recognize that the real me would never want to ruin such a precious life, no matter how terrible it may seem - and I tell them what I'm up to. Sometimes I tell them where I am, sometimes I don't.

When I hear a siren, my friends know that calls are cut short because I disconnect my cell phone battery and drive away again. I run until I'm so out of breath and broken down that I have no energy to harm myself. Then I ask for help.

It's happened so many times that I feel stupid at the end of every fit. I can never believe that I'm strong enough to keep myself from downing the bottle of pills on my passenger seat, but not strong enough to openly ask for help before loading up the car and leaving.

When my friends try to talk to me about what they could have done differently, I always tell them that I need to just be held down and hugged, but in all actuality, it'd be like trying to cram a shark into a goldfish tank because I'm always filled with so much rage.

This January was really rough. Bad news kept piling on top of me and I'd been drinking and partying way more than I should have been... My judgment was impaired and I tried to go to a friend for support, but no one is able to drop everything and focus on a single human being at the drop of a hat.

I drove off... Parked my car on the side of the road, and started popping pills. I kept track. I kept close track... I knew that if I took a certain amount of this or that I'd simply fall asleep and maybe things would get better when I woke up.

My friend turned me in to the local authorities, I was taken to the local hospital and manipulated everyone into believing that I was OK. I must have thought and talked about attempting suicide every day for a full week. I was surrounded by county sheriffs at one point - I think there were 4 cars total, and able to manipulate them into believing that I was mentally sound. I had a paramedic knock on my car window (after noticing the alcohol and pills) and I somehow managed to get out of going in.

It seems like suicidal tendencies increase when I'm put on any form of antidepressant. I think it's because I always picture the commercials where people are running through fields of flowers smiling while taking the medications, and I wonder why I don't feel that way. I put a lot of pressure on myself. So much, that when I let myself down, I figure it's time to go.

As I'm writing this, I'm realizing that I've never spoken so candidly about what has gone on mentally. I mention breakdowns, I mention that I'm not mentally capable of completing something, but I never openly say it's because I'm struggling to keep myself alive.

That's what I do on a daily basis... I try to be more of who I was and want to be, and less of who the Lyme makes me. I just took a month and a half break from medications - after a 2 week stay in the hospital - and I think I came out of the break with a much better perspective on this disease and the way my body and mind deal with it.

The biggest thing I discovered is that you don't know how strong you are until strength is all you have left.

I'd love to say that I'll never be in the dark places I've been again, but I realize that because of my own negligence I am now a lot sicker than I should be. I realize getting better is not going to be easy. It never was... I realize that there'll be many more long, dark nights and there may be one that I don't come out of, but I know how much I look forward to the future these days and how disappointed I would be if I didn't fulfill every last one of the goals I've set for myself.

Future... A new option for me. I realized during my break that I'd been living in anticipation of dying. I've come so close, medically speaking, that I couldn't help but think every night when I closed my eyes they wouldn't open again in the morning... Right out of the gate, when I was diagnosed, the doctors matter of factly told me that I was not going to survive my stay. That's what I've thought the entire time I've had Lyme - that I wouldn't survive my stay. I've thrown out the earlier calculations that I wouldn't make it past 30, and at my 27th birthday dinner, I proposed a toast to the future, I mentioned how happy we'd all be the day I turn 31... Though I know that the doctors that made those calculations were idiots, I can't help but keep the number in my head. It's been there for so long... Now it's there as a milestone. My friends dread turning 30, when I think that my 30s will be the happiest decade of my life...

As best as my body has tried to shut down, It hasn't, and I don't think it's going to. I'm certainly not planning on letting it..."

I'd like to add for those of you that haven't witnessed this side of me, or for those who have, that when I go into these extreme bouts of "Lyme Rage" I come out not remembering a lot of the details. I know that I can be extremely mean and vindictive, I know that I say and do things that I would never actually believe I could do in my normal life... It's always a lot to process... Sometimes I come out of a fit, just to find myself right back in one because I can't process all the information I have to process. Most of the time, I just want to walk away and pretend it never happened. I mean, if I don't remember - it didn't happen, it couldn't possibly be THAT bad, could it??? My friends that have witnessed it, know that it is THAT bad. It's terrible to not be in control of your body and mind at any given time. It's even worse to not to remember throwing the match down and burning certain bridges.
Andrea

……………………………………….

I stand up in my red patent leather high heels you gave me in May 2005.   The diagnosis of Lyme disease.  The beginning of the end. 

April 2009 you began injecting crushed morphine pills into your port-a-cath.  The talc from the pills clogging your lungs, slowly smothering you.  No one knew.

Today, these shoes mark a new beginning.

How come I did not see this letter until after you died?

This year, in December, you would be 30. 

I teeter, not used to wearing heels.  It is hard to walk.  The micro mini skirt keeps crawling up over my butt and bunching up around my waist.  The long blond hair falls in my face, gets stuck in my mouth and blocks my vision.

I am going to look good, even if it pains me.

Pulling my self up tall, I stand and wait.  Find my point of balance.  These are shoes you walk slowly in.  Being a 56-year-old blond babe in a micro mini shirt is a moment to savor.
Steve sees me in my outfit for the first time. 

He laughs in absolute delight.

“Damn.”  Is all he can say. 

“What’d you say your name was?”  he asks.

“Nadine.”  I tell him coyly.  “My name is Nadine.”

“Damn.” He laughs again wiggling his hips.

I want to tell him the shoes were a gift from you.  It is enough, though, that I know.  That in this moment I can stand straight and count my blessings.

Tonight, he and I will dance—me tall and steady in my new red shoes. 

Tonight—I will be someone new.

                                   Love You,
                                   Mom.