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.
Run. Every time I log into Facebook this past two weeks, there is a post about the Jingle Bell Run. Bell
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
—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 Rochester --the doctors suspected meningitis. Norfolk
“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
. 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. San Francisco
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.
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.
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.
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.