Initial Diagnosis

November 17, 2011

“You’ll love it here.  The winds are beautiful when they blow.”

Those words you whispered in a dream haunted me this morning as I drove to work.  The remnants of last night’s windstorm littered Barnes, then Crosby Streets as I drove over, then down the hill to my office. Brilliant yellow orange red leaves wet, pasted to the pavement.  A ribbon of baby blue lined the sky above and below a hedge and then a wall of clouds in varying shades of gray.

I am trying to make sense of the senseless.  Piecing together what medical records and what you wrote in emails, on Facebook, Twitter, My Space.  Notes I find written on college ruled 8x 11 sheets of paper. 

The struggle with Lyme disease was really your story to tell.  It is a story that can only be told from the perspective of the participant.  The story I tell, will be different than yours.  But it is all I have.  You want me to write what you no longer can.  I feel it as thoughts flip cartwheels through my brain.

My lawyer’s training, my work now as a judge, demand that I look at all the evidence I have before me, come up with a conclusion based on a preponderance of the evidence.  It is the discipline I use approaching everything. 

In this case, your death was the conclusion—the final order I must grapple with.  It is the hedge and then wall of clouds in varying shades of gray that frame a ribbon of blue sky outside my window as I sit here going through your papers.

Notice of Occupational Disease and Claim for Compensation

US Department of Labor

Employment Standards Administration

Office of Worker’s Compensation Program

I found this application in the Banker’s Box.  On the outside, written with a black Sharpie the letters-AMP-your initials.  In your handwriting—IMPORTANT PAPERS.

I read further.

Name of Employee

ORTIZ-PETERSON, ANDREA M.

Employee’s Occupation

ABLE SEAMAN

MILITARY SEALIFT COMMAND

AFLOAT PERSONNEL MANAGEMENT CENTER

VIRGINIA BEACH, VA

Date you first realized the disease or illness was caused or aggravated by your employment

02/07/05

Explain the relationship to your employment, and why you came to this realization

MY TRAVELS WITH MSC HAVE LED ME TO AREAS WHERE TICK-BORN ILLNESSES ARE PREVALENT.

Nature of disease or illness

LYME DISEASE

Your signature on the bottom of the form.  February 15, 2005.

Exhibit A.  Admitted. 

Attached are your medical records to substantiate your claim.  I keep flipping back to the first page.  Exhibit A  Running the tip of my index finger over your signature. 

Exhibit B.

MEDICAL SUMMARY FORM

History and Physical Findings:

During work up for CTS Right hand by D.L. McDermott, Neurologist, blood serum showed + Lyme AbIgM by Western Blot.  No symptom.  No incidence of tic-bite.

Results of Diagnostic Studies/Testing:

+Lyme AbIgM by Western Blot

Diagnosis:

Lyme Disease

Treatment:

Vibromycin 100 g x 2 for 2 weeks

She is fit for duty

I cannot read the physician’s signature.  But it is signed.  By a doctor.  MD.  Whose diagnosis was Lyme disease.  Definitively.

Exhibit B.  Admitted.

“In a whimsical mood and quite extemporaneously, Justice Oliver Wendell Holmes once remarked: ‘Facts in isolation amount to mere gossip; facts in relation become philosophy.'”


The same could be said about Lyme disease.  Every doctor is his own philosopher, has his own philosophy. 

Philosophy: n.  1.a.  Speculative inquiry concerning the source and nature…
b.  Any set of ideas based on such thinking  2.  A basic theory concerning a particular subject.
Philosophy.  Everything is speculative.  You base your ideas based on speculative thinking.  You come up with a basic theory concerning the particular subject.

Lyme Disease.

It is hard to determine what is mere gossip.  It is impossible to be a patient caught between two philosophies. 

This is a lesson we have yet to learn. 

Exhibit C.

LabCorp

Attn: Flordeliza M. McDermott MD

Virginia Beach, Virginia 

Date Collected:  1/25/05

You are 23 years and 25 days old.

Date Reported:  1/28/05  2135

Lyme IgG WB Interp.             Negative

Lyme IgM WB Interp.            Positive

Exhibit C.  Admitted.

To distinguish the false positives from the true positives, a more specific laboratory technique, known as immunoblotting, is used. (The Western blot, which identifies specific antibody proteins, is but one kind of immunoblot; there is also a Northern blot, which separates and identifies RNA fragments, and a Southern blot, which does the same for DNA sequences.) In a Western blot, the testing laboratory looks for antibodies directed against a wide range of Bb proteins. This is done by first disrupting Bb cells with an electrical current and then "blotting" the separated proteins onto a paper or nylon sheet. The current causes the proteins to separate according to their particle weights, measured in kilodaltons (kDa). From here on, the procedure is similar to the ELISA -- the various Bb antigens are exposed to the patient's serum, and reactivity is measured the same way (by linking an enzyme to a second antibody that reacts to the human antibodies). If the patient has antibody to a specific Bb protein, a "band" will form at a specific place on the immunoblot. For example, if a patient has antibody directed against outer surface protein A (OspA) of Bb, there will be a WB band at 31 kDa. By looking at the band pattern of patient's WB results, the lab can determine if the patient's immune response is specific for Bb.

Here's where all the problems come in. Until recently, there has never been an agreed-upon standard for what constitutes a positive WB. Different laboratories have used different antigen preparations (say, different strains of Bb) to run the test and have also interpreted results differently. Some required a certain number of bands to constitute a positive result, others might require more or fewer. Some felt that certain bands should be given more priority than others. In late 1994, the Centers for Disease Control and Prevention (CDC) convened a meeting in Dearborn, Michigan [1] in an attempt to get everybody on the same page, so that there would be some consistency from lab to lab in the methodology and reporting of Western blot results.

Many patients have noticed that their Western blot report usually contains two parts: IgM and IgG.These are immunoglobulins (antibody proteins) produced by the immune system to fight infection. IgM is produced fairly early in the course of an infection, while IgG response comes later. Some patients might already have an IgM response at the time of the EM rash; IgG response, according to the traditional model, tends to start several weeks after infection and peak months or even years later. In some patients, the IgM response can remain elevated; in others it might decline, regardless of whether or not treatment is successful. Similarly, IgG response can remain strong or decline with time, again regardless of treatment. Most WB results report separate IgM and IgG band patterns and the criteria for a positive result are different for the two immunoglobulins. 

The website for the Center for Disease Control says the following on its first page:

Typical symptoms include fever, headache, fatigue, and a characteristic skin rash called erythema migrans. If left untreated, infection can spread to joints, the heart, and the nervous system. Lyme disease is diagnosed based on symptoms, physical findings (e.g., rash), and the possibility of exposure to infected ticks; laboratory testing is helpful if used correctly and performed with validated methods. Most cases of Lyme disease can be treated successfully with a few weeks of antibiotics.

Lyme Disease Diagnosis and Treatment

Lyme disease is diagnosed based on:

• Signs and symptoms
• A history of possible infections to infected blacklegged ticks

Laboratory blood tests are helpful if used correctly and performed with validated methods. Laboratory tests are not recommended for patients who do not have symptoms typical of Lyme disease. Just as it is important to correctly diagnose Lyme disease when a patient has it, it is important to avoid misdiagnosis and treatment of Lyme disease when the true cause of the illness is something else.
  
I just want hard facts.  Physical evidence.  Something I can base my thoroughly objective decision on.  It is important to get it right.

You are 23 years and 28 days old.  When you get the results, you will still put all your trust in doctors.  You will believe you have a definitive diagnosis for what is wrong with you.  You will believe you will be cured.

You will not believe me when I tell you the importance of getting the right treatment with the right doctor.  You will not believe me when I tell you that two weeks of antibiotic therapy is not enough. 

You will remind me I have a law degree.  Not a medical degree. 

Because I am only your mother, not your doctor, not a doctor, you will trust them more.

Because I am your mother, I go to the internet.  Google Lyme Disease.  Begin building my case.  My arguments.

Exhibit D.  Your Honor.  I offer Exhibit D.

NORFOLK GENERAL HOSPITAL

MD:  RYAN, GORDON A. MD

ADM: 2/7/05

DX:  GRAM POSITIVE COCCI IN PAIRS IN CSF, LYME DI VERIFIED RADIOLOGY REPORTS

CONSULTING MD;  DEVGON, PITAMBER M

CONSULTING MD: CHERRY, JILL RES

CONSULTING MD: COLE, FREDERICK MD

CONSULTING MD: LAPINEL, STEPHEN MD

CONSULTING MD: .SMGID

CONSULTING MD:  NEUGHEBAUER, BOGDAN

CONSULTING MD: .NEUROLOGY SPEC ME

CONSULTING MD:  WILLIAMS, ARMIST MD

RADIOLOGIST:  KIM, YOONAH MD

Streptococcus pneumonaie in bacterial meningitis:
"Before the 1990s, Haemophilus influenzae type b (Hib) was the leading cause of bacterial meningitis, but new vaccines being given to all children as part of their routine immunizations have reduced the occurrence of invasive disease due to H. influenzae. Today, Streptococcus pneumoniae and Neisseria meningitidis are the leading causes of bacterial meningitis."
"High fever, headache, and stiff neck are common symptoms of meningitis in anyone over the age of 2 years.""The diagnosis is usually made by growing bacteria from a sample of spinal fluid. The spinal fluid is obtained by performing a spinal tap, in which a needle is inserted into an area in the lower back where fluid in the spinal canal is readily accessible. Identification of the type of bacteria responsible is important for selection of correct antibiotics."

Gram positive cocci in pairs in csf  means Streptococcus pneumonaie.  Bacterial meningitis.

Are you offering Exhibit D counsel.

I am, your Honor.

Any objection?
No objection.

Exhibit D is admitted.

Lyme disease is transmitted by Ixodes hard ticks; man is an accidental host.
Doxycycline, amoxicillin, or a cephalosporin

it is important to note that many people are not aware of tick bites, so a negative history for them should not be considered unassailable.

It is important to note:  There is a controversy surrounding what is known as chronic Lyme disease. 

I am a divining rod, seeking an underground source of water. 

I am thirsty.  I will not give up until I find it.

I am a judge.

I must render a judgment.

The tea kettle whistles under the gas flame.  I have a cup of Starbucks Via Italian Roast with a dollop of sugarfree hazelnut Coffeemate.  I need to brush my teeth.  I need to soak in a hot tub of lavender scented bubbles. 

I listen to towels tumbling in the dryer.  The whir of the processor in my computer as I try to piece Exhibits A-D together. 

Sadie feels me feeling you.  She comes and lays her head on my thigh, sighs.  I look down and see her plaintive button eyes.  Sadie still mourns your loss too.

She distracts me.

I Google “dogs mourning”.  I find an article by Dr. Nicholas Dodman.  He writes what I think Sadie would tell me if she could talk:

Pets may also show signs of loss and mourning in ways that the family may not recognize. Although somewhat different, they do feel the loss of loved ones. Many have a significant degree of attachment to their owner that leads to anxiety and distress when even short-term separation is thrust upon them, let alone bereavement.

Perhaps, the most famous dog-grieving story of all time is that of Greyfriars Bobby, a Skye terrier owned by a Mr. John Gray of Edinburgh, Scotland. Mr. Gray passed away in 1858 and was buried in Greyfriars Churchyard, Bobby was one of the conspicuous mourners. As time went by he never forgot his deceased master. Every day for the next 14 years until his own death in 1872, Bobby spent each night lying on his master's grave come rain, hail and snow. In honor of Bobby's devotion, a statue and water fountain was erected to his memory in 1873.

Sadie has no grave to go to.  She only has my thigh to lay her head on, my body to curl up to at night.

And I have her.

Moving along.

Exhibit E.  I offer Exhibit E.

DISCHARGE INSTRUCTIONS:

2/11/05           DISCHARGE MED: CEFTRIAXOME, EVERY 12HRS- 2GM,--IV,

                        ANTIBIOTIC, --THRU 2/21/05, --THEN 2G EVERY 12 HR, THRU

                        3/7/05

No objection.

Exhibit E is admitted. 

It is all I can process on this day.  We are adjourned.  For the evening.

I walk outside the sliding glass door onto my patio.

While I have been taking in evidence, deliberating, the clouds have won.  Have obliterated the ribbon of blue.  It is early afternoon, already the sky darkens.  First comes the mist, droplets so small I feel caressed by clouds, but it is cold.  Damp.  My cheeks pinken. 

Condensed water coalesces into droplets too small to fall as precipitation.  They are the clouds.  The moisture around us is continually evaporating, condensing in the sky.  Looking closely, I can see some parts of the cloud around me disappearing, evaporating.  Other parts grow, condense. 

The droplets concentrate on tinier dust, salt, smoke particles that form the core.

But before they can fall, the fall velocity has to exceed the cloud updraft speed.

This is not a trivial task.  Millions of cloud droplets are required to produce a single raindrop.

I am condensed water coalescing into droplets too small to fall as precipitation.  I am a cloud.  A collection of droplets condensing.  Forming a core around your dusty ashes.

This is not a trivial task.

                                           Love,  Mom

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.