The Lost Hope

That is the name of my ship.

I need a doctor today. Day 3 of nearly going to the hospital. The pills I throw at the pain, ibuprofen and fioricet, barely hold it at bay. I am drenched in sweat as if I have been bailing single-handedly but I am also cold at some level, as if I am bailing water in an ice storm, far out at sea.

It is the last day of the month.

The head pain is like a cloud in the right side, and a bullet in the left.

For two days I have prayed a shark would come by and amputate the left leg at the knee.

Do I attempt to swim for the ER? The walk- in clinic? I am looking up doctors online, wracking my brain for anyone within miles who might be able to help me. Anyone on the whole planet? Perhaps I should go back and see Dr. Laura Shelton, my naturopath in Bellingham who helped me through the health crises of my twenties. We never really got a diagnosis but she did help me get through. A very compassionate person with great talent. One at least felt she was there rowing along, ready to hoist a bucket. This has not happened for me in NJ. (excluding the arrival of Olympia.)

My labs have been examined. The doctor have said, 'you are ok, we can't find anything, we may never find anything', and sent me on my way. They have not seen the axe handle sticking out of my head, the alligator attached to my leg, the who knows what else. Maybe it is just the Dunkin Donuts of medicine here. I am getting drive-thru medicine. A Styrofoam cup. Really bad fake food. It looks like a donut but it is made of plastic, sugar, and food dye. Sometimes I feel like I am just in a play with people dressed up as medical professionals.

But wait, there has been some tremendous courtesy and care from some doctors and technicians, and expert tests done by the gi docs and others, and conscientious knocking me out by the anesthesiologist. The cardiac doctor and the dermatologist were entertaining. The nurses have been very good. The ultrasound people kind and caring. The x-ray guy funny. The first emergency room doctor I ever saw was so sincere and wanted to be helpful. The eye doctor was nice. And so forth.

I am just sour with pain.

I can’t tell if this a degenerative disease or a progressive illness.

Until it is Something, it is Anything.

This journey through the underworld of pain and modern medicine is a true living nightmare. How can one body hurt so much? Even my shoulder blades are screeching.
I sit here jiggling and typing, trying to think of what to do. Soon I will take something.

Can I hold on until the neurologist sees me tomorrow? I have lost some hope in Dr. Raab but I should reserve that judgement until I see her for the lab results. But calls all week to her office to get in sooner were fruitless. All week I have been on the cusp of heading to the hospital because my pain is so unbearable. I called her Monday and all she had for me is for me to keep my originally scheduled Friday appointment. I know there are many people who need help. I need a pain clinic. A doctor in an office with a full case load does not have time for my pain and suffering, my medical malady and mystery.

I hope tomorrow proves me wrong.
Today I stay and do battle with this.

It is a monster. I am in its belly.

Lyme Disease

Tonight I watched a youtube video of a teenage girl with Lyme disease who went undiagnosed for two years. Her symptoms were nearly identical with mine. Severe head pain which nothing helped and which would not let her sleep or lie down. Fatigue and frustration. Endless tests. And then it moved into her joints and there was pain in her fingers, toes, and knees. Sometimes she could not walk.

She had had a test for Lyme but it had been a false negative, and so she thought it had been ruled out. Doctors went on to do things like remove her braces and give her injections in her head for the pain but it did not help.

Today had been a most difficult day. I was up all night in pain and by 3 am was considering the hospital. I limped around the house and tried to think what to do, where to go. Is there a place you can check into and they will try to help you get away from your pain?

At 7 am I took more pain medication, this time fioricet as head had been roaring into migraine land. From 9:30 am to 11:30 am I had a pleasant and deep sleep.

I made it to Olympia Session #5. She is a very gentle person with very strong hands. I was able to rest in stillness on her table, unlike last week when pain had me pitching inside. She thought the pain that Dr. Chenitz had accidentally triggered had stirred up my parasympathetic/sympathetic nervous system so she did calming things and I was calmed.

I had images of crickets and owls. And starry skies in the desert. Warmth also.

But by 7 pm I was back in screaming knee pain and so hot packed it and took more ibuprofen. And that is when I watched the YouTube video. I will try to find a Lyme specialist. Have been considering the possibility of Lyme but never seriously until this thing spread to my left knee early 2010. And then the x-ray was done and the knee looked fine, which I knew it would.

But it screams so loudly I want a crocodile to come bite it off. It screams and screams and will not let me rest. Just like my head.

The first year we were in New Jersey was a crazy year for ticks and I was bitten a lot and both of our dogs ended up getting Lyme. That was way back in 2005, 2006. But it was in 2007 that severe pain showed up in my shoulder/back, and that involves a joint I guess though I don’t think of it that way.

I look around the room and wonder what happened to the person here, how did these piles and mounds and stacks of papers and books and miscellaneous not get cleared away. Why is her hair unwashed? No one has dusted in centuries. The person who was here has gotten very sick and been called away to the kingdom of illness.

Will 2011 hold answers for me?

Diagnosis vs. Autopsy

I would like a diagnosis before its time for an autopsy.

I send my self to the repair shop, over and over again.


I recall in the Fall when the crackling was so severe in my head, I kept imagining a little monster in there eating my nerves and tissue.

I thought, well what I really need is Dr. G. that awesome Discovery Channel medical examiner.

But she only diagnoses dead people,
So there was a logistical problem.

Today my ears ring like a bell.
Can you hear them?

Will I haunt the halls of medicine, always looking for an answer.
How far will I get in my lifetime?

Today we are off to a museum. Not just art for art’s sake.
There is medicine in art.


(March 27th, door to the Frick)

And the winner is

Ok, I told the pain it won.

It did.

I give.

Up late with tea and doughnuts

The head won’t allow sleep so I won’t allow it.
That makes no sense! Hmm, I was up all night again and that leads to twisted thought.

I slept this morning though and then I watched 4 hours (4 Hours!) of science television about people with strange neurological conditions. I could not get enough of it, and when it came to the man who could not identify a giraffe, I wept.

For him and for me.

Am glad to report that I made it to the yoga, magic, and painting event on Friday and was honored to join ten feisty women in a large room where we made a huge colorful mess. The yoga, though so gentle, was hard on my body, but the last hour of painting I was in a blissful state where I did not feel any of my pain. Ah, painting…

I was then supposed to go to NYC the next day but was too sick to go. Spent all of Saturday recuperating with heating packs and ibuprofen. My mate is so kind and we took the train to NYC on Sunday where we ended up in an interesting dialogue with a homeless man at St. Francis church, and there were pigeons and a Greek parade and we went to see art at the Frick and we ate and walked and enjoyed the city and each other and then climbed the stairs into the very Gothic St. Patrick’s cathedral and I enjoyed the light and the flickering candles. (This image is the window above the door where we entered.) It was the Third Sunday of Lent, the Celebration of the Eucharist. We stayed for part of the service and then rejoined the street. Came home with a prized box of a dozen krispi kremes.

I was tired and went to bed before midnight but less than an hour later my head had me up and I had pins and needles on my right side so I had to move around a while. I have to roam to stay comfortable.
.
Alas, for that and other reasons I was unable to join the ladies for this evening’s presentation on Haiti. A disappointment and I endeavor to go and see them as soon as I am able.

I rescheduled the EEG also. First we thought my mate was going to be out of town and it would be better if I were not home alone after it, and then I thought that it may be just too much for my poor little brain to take this week.

I had the saddest bittersweet Sophie’s Choice sort of thought. What if the test I am waiting on really will show something, what if it did show porphyria, and then it turns out it was from my father’s side, and not from my mother’s as I have imagined? This would mean my poor father who suffered so had never even been diagnosed or helped, and it also means that the info I receive would not help my mother and baby brother.

Did I share with you my jubilant news? That I just learned that now there is a DNA test for porphyria? It is several thousand dollars but I am thinking of getting it done, unless the neurologist has come up with something else. Do you think I can hold a special Bake Sale-Car Wash for DNA Testing?!

I have also still been wondering what that was that happened to me when Dr. Chenitz pushed on my head. He has used diagnosis codes 729.1 and 784 for myalgia and myositis, pain in the cranial region. Does that cover it? What is going on there, on the inside?

My mate and I are facing possible relocation and so my mind swirls with thoughts and wonderings.

It has occurred to me that I need to reconnect with some of my wisest women and to that end I have thought on Jessica and Alexandra and Bette and Leslie. (And there’s Mary and Laura and…)

Thankfully I am in touch already with the mom and sisters and girlfriends and these new healers in my life.

And I have thought on you. Thank You for being here.

I know some things, like when I need to dance on something.
I need to dance on some of my issues.

Wearing deer antlers and the moon, I think.

Just showing up

This is so hard to do now
But I know how important it is.

I have two wonderful opportunities:
Tonight=pouring paint with the goddesses

Monday night= time with Sally and Mary, hearing about Mary’s work in Haiti

I hope and pray I make it to both.

If and when I return to doing work in the world
Just showing up is the first step.

The goddesses are calling me.

I am trying to get to the phone.

Halo and horns

I am up to my halo and horns in medical bills and unanswered questions.

It is like I am running the world’s most depressing country.
Ok, maybe Japan has that distinction right now. So sorry for your suffering Japan.
Libya, Syria, the Sudan, and many others not having so much fun either.

My mail enrages me. That can’t be good! Well, Chase Bank irritates me by charging me a ten dollar fee for my checking account balance dipping below a thousand dollars, but I will just take my money out and put it under the pillow. A credit union is my primary banking experience and they are a delight. The banks seem to have all become parasitic. You keep your money there and they charge you for having less than a thousand dollars with them. Bye bye Chase.

What angered me was a bill from the Doctor Who Yelled At Me.
So I spent some time on the phone with the office manager Carol who was concerned and professional and handled the situation to my satisfaction. Case closed. I just hope and pray that that doctor does not abuse someone else who goes to her in pain.

I can still hear her voice yelling in my head, “Why are you asking why? Why are you asking why?” and the weird dismissive shrug, as she yelled, “You are 40 and you have muscle pain. You are pointing at your muscle.”

What is wrong with my head? What is going on the right side? Aneurysm? Abscess? Infection? Pinched nerve? Broken bone? Torn ligament? Tumor? Mystery guest?

There are moments when I rise above the shock and pain of the past few years, and my mind in trying to find an answer really does think I must have been in some horrendous accident, shot in the head by an arrow at close range, or the victim of a bear attack, or something, and no one wants to tell me. Yes that sounds strange and paranoid but it’s like the mind was going along minding its own business, when something terrible happened to the body.

It’s like the mind was a sea urchin and its shell got crushed and crunched, and systems are down, and it cannot figure out what happened, but it is not able to function as it once did. Poor perplexed sea urchin.

I don’t want to be my own doctor. I am hoping Dr. Raab will help me.

Thunder-snow and buttermilk biscuits

Last night I said a prayer. It was unusual in that I asked for something specific. I asked that something please show up on this latest round of tests.

Somehow, I don’t think anything will, which is why I said a prayer.
It is so out of my hands.

So I have said my prayer, and I will go the EEG and the next doctor appointment, and meanwhile I will focus on the small things that are good. Will celebrate the small successes, and then come what may, I plan to be in Bellingham with my niece and nephew for Easter.

I hope no one thought I was aligning myself with Jesus in my path to experience some resurrection between Ash Wednesday and Easter. I was thinking of myself more as a flower, or a rabbit.

Still the cat of death looms.

I want to have 400 egg hunts with my niece and nephew.

I am also very fond of Passover and the gathering for Seder and miss the many years in which I celebrated these holidays with extended family and friends. I need to eat the bitter herbs.

As for the very good things, last night I made country-fried steak and gravy, and buttermilk biscuits, and baby carrots. And I love making biscuits though I cannot do it without coating the kitchen, and myself, in flour.

The ghost of flour.

Isn’t a fresh-from-the-oven buttermilk biscuit slathered with more butter and topped with strawberry jam one of the finer things in life?

And after that came the thunder-snow. The hail that fell like gumballs. Then the lightning and thunder, then the cold rain. Now there is just some snow in the yard and the sun urging it into water.

The hyacinth

I have a bad feeling they are not going to find out what is wrong with me before it is too late. I never expected to get this ill or become this disabled. I suppose no one ever does.

Though I have been ill off and on since my early teens, there was a cyclical nature to the illness, and so I had some times of vitality and almost normalcy.

Whoever imagined that pain would lead to more pain and that suffering would reproduce itself?

My life is small now. I choose the shortest distance between two points.

I plan nothing before noon.
I plan no more than one day ahead, if that.
I don’t wash my hair as often.
My walks are much shorter.
I leave as much space and time as free as I can.
My handwriting which was never good has devolved into scratches I cannot read.

Pain and suffering do get you in touch with gratitude.

It does make you appreciate the so called small things:

The sound of a bird singing on a snowy day.

The thick frothy milk in your hot chocolate.

A salt caramel square.

A friend who sends a letter.

A friend who calls and says he will schedule his mojito party for whenever you can be in town.

A woman who expertly does a blood draw.

A kind doctor with warmth and intelligence in her eyes.

A patient and organized front desk person.

A song you like, played again.

Time alone, warmth, food.

A loving mate.

A family member with happy news about their life.

The violets peeking up from the ground.

The hyacinth.

Snow and violets

Hot chocolate on a rainy day.

It’s the simple pleasures that mean the most and feel the best to me.

The morning began with me yelling very loudly in my sleep, “CAREFUL, CAREFUL, CAREFUL” to my mate as he leaned down to kiss me goodbye. I was asleep and he thought I was referring to him driving in the snow, but it hadn’t been snowing when I went to bed at 2 am and I was yelling because just the pressure of him kissing my right cheek was causing me extreme pain. (My right side head had been hurting all night.)

Dr. Chenitz. OUCH.

But maybe this will all lead to something. This is what I am trying to explain to them happened in the Fall that landed me at the ER. Something exploded in the right side of my head. Was it an airbag? Was I in an accident in my sleep?

Could it be venous? My bp and pain were spiking high. Could it be musculoskeletal? It was as if someone broke my skull and ripped a tendon or ligament off its attachment site. But I was home alone and I was asleep when it happened.

So today I am off to have blood drawn and urine given. And I am waiting for the nice EEG lady to call me back to schedule. She was with an infant. ‘Oh, poor baby’, I thought. Too much suffering in this world and it starts so young.

When I was first in the ER in Nov 2008 with topping out, blow- off- ones- head pain, a woman gave birth next to me, in a certain degree of distress. I could not see all of her but I could see her Orthodox Jewish husband davening, and then the scream of the baby and all those suffering cries come from woman and child, and then when they said, “ The baby is a girl”, my heart broke. A girl born into this world with its endless pain.

I didn’t used to think like this.



March 23, 2011

Dr. Chenitz

Or alternately, “how I leapt out of his chair”

He did not mean to cause me immense pain.

Let me go back to the beginning.

In Dec and Jan the gp and ENT doc had both said “find a dentist to rule out TMJ because we do not what you mean when you say you feel you were kicked in the side of the head by a horse. Well, we know what you mean but we have no idea why.”

I am years overdue for normal things like dental appointments and female exams because my emergency and pain issues have kept all my energy and time and money tied up. So I was driving in Red Bank NJ a few weeks ago wondering who I would see for my head pain level 11 and there in glowing gold letters was a doctor who specialized in tmj and oral/facial pain. I called and had a nice chat with Susan his assistant and she sent me paperwork. I told her I didn’t really think I had tmj but I had severe right sided head pain.

My thinking was that we would rule in/or out tmj and meanwhile he must be an expert in the anatomy of the head and maybe he would help me.

Desperation. Let’s call 2011 the Year of Desperation. (Really it started in the Fall 2010, the supremely desperate part. Ok, maybe before that. It’s like those Homeland Security color charts they have just retired. Hard to tell what shades of red, orange, yellow really mean.)

So she sent the paperwork and it was lengthy and detailed and gave me hope, such interesting and precise questions. I also see his insane number of credentials and his $500 price tag and I think he is either a genius or a quack. What have I got to lose? I mean besides the obvious.

Well, Dr. Chenitz was wonderful. And might I add charming and sort of old fashioned. He teaches at two hospitals and I felt I was having the privileged attention of a Dr. House but with kindness added.

(And regarding the money, he is actually $500 per hour, and they should have charged me $750 for the hour and a half he spent focused on my troubles but they didn’t. And he was worth every penny. Let me say that.)

He sorted out my story the best he could.

He said I was the only person in all the years of his practice who had self referred.

And that he couldn’t believe anyone else had even ever seen his small sign. (He practices here only one day, subletting in someone else’s office. His practice is in South Orange.)

I would go on to astound him in another way.

He did the thorough history. He began the physical exam. All was well. Poking, prodding, measuring, open your mouth, close it, do this, do that. No problems.
Until he began to put pressure on the upper right side of my head above my ear. (That place that landed me in ER in the Fall). He pushed and I got the most overwhelming electrical shock crushing deep and horrible pain move through the right side of my head and down my right side and into my gut and I almost instantly vomited.

He released quickly as I grimaced and said “Oh my God, that was awful.”

He went to find it again, found it too well and applied pressure~ and I almost died.
I nearly vomited and passed out from the pain, and instantly began crying and hyperventilating so badly I couldn’t even catch my breath.

They got me water and a Kleenex and I got up from chair and stood crying, trying to catch my breath and to not black out or throw up. I was dizzy and nauseous. And I had felt my bp spike up and my heart was pounding racehorse style.

After about five solid minutes I was ok.

Dr. Chenitz and Susan said in all their years of practice they had never seen someone have that extreme of a reaction to that spot.

And with all respect to Dr. Chenitz, he is a bit old.

So we resumed the exam and everything else was fine and normal though there was some more pain in right side cheek/jaw and also right back/shoulder which he called the rhomboid and which is the spot that sent me to the ER in 2007.

So here was his finding:

I do not have tmj the way people think about it.
He does say I have some muscle pain with trigger points associated with the temporomandibular system and that his pushing there may also trigger my migraine reaction. Everything overlaps.

He also says a diagnosis of POMP, persistent oral facial pain is possible but he is not sure yet.

1. He would recommend a deep temporal nerve block (injection into my temple)
2. If that wasn’t helpful then he would try a trigger point injection into that muscle
3. If those didn’t work he would try a masseteric nerve block

Relief could come within a week after the injection. There is the risk of headache at the sight of the injection.

He was glad the myofascial release treatments worked and thought I should continue as long as it was helping. He wanted me to see Dr. Raab and to talk to her about starting nortriptyline at bedtime. He says my inadequate sleep is not good and that the medicine could put me into Stage 3 sleep. He says it used to be used for depression and what they learned is that it is very helpful for chronic pain, and that also it can help reduce migraines. “A prize package” he called it.

Some people have cardiac problems so he wants me to have a baseline EKG and then follow up EKGs a month after starting and then again.

He wants to see the migraines get under control and hopes that nortriptyline would help, or he recommends topomax or a triptan, possible frova.

After the migraines are under control he would reevaluate me after that to check on my muscle pain. And he wants me to see a psychologist named Karen to talk about stress management, since my life is now so changed by this condition.

I left his office in pain and yet calmed on some level by the thorough attention he paid, and the fact that he talked to me with great care and kindness. I don’t know what that means that he hurt me so badly. I cannot push there and induce that (or maybe I would not dare) and thankfully Olympia has not done that (or I would not return to her due to fear.)

But what did the pain there mean? That is the central puzzle.

I think I have moved into the dread area of trigeminal neuralgia, which the doctor in January had hoped was not true.

Meanwhile, in other news, I am starting to really believe I have porphyria and that I have had it my whole life and it has been disabling me with attacks since I was 14. That was when they began testing me for lupus and other diseases but couldn’t find anything.
Last night I found two blogs of young women with porphyria.
There is part of me that is so desperate and envious of these girls who figured it out in their twenties. And there is part of me that is just relieved and hopeful that I might have an answer soon, before it’s too late to reclaim a life, and then there is part of me so very sad for my mother and grandmother who suffered so much of their lives with no diagnosis.

But maybe all these tests will again show nothing.

And in other news, the violets are coming up. I love violets.

The Central Fact of Our Lives

In this excerpt from A Mother’s Story, Gloria Vanderbilt is writing about a conversation between her son Carter (Anderson Cooper’s older brother) as a very young and precocious child, (he would die at 23) and her husband Wyatt Cooper, who would also die young, at age 50.

He had begun trying to understand the fact of death some time earlier. After seeing the movie Ben Hur, he asked one day, “All that was two thousand years ago?” His father answered, “Yes.” “And all the people who were alive then are dead now?” Again, “Yes.” “And lots of people have been born since then and then got old and died?” “Yes.” “And someday everybody alive now will be dead and there will be other people living here?” “Yes.” There was no other answer to give. He had summed up the whole story very well. He thought it over for a few moments and rendered a judgment.” “It’s a strange way of doing it,” he said.

His father thought, Well, he’s not the first one in history to whom the idea has occurred, but he came to a conclusion, accepted it, and was able to get on with his life in the light of that knowledge. It might not be exactly as Wyatt would have arranged it if he had invented mankind, but there it is, the central fact of our lives. Sooner or later we learn to live with it. It may be our tragedy, or it may be precisely that truth which gives our lives the meaning, the significance, and the perspective that they have. Wyatt believed that the accommodation we make with our knowledge of the transient nature of time may be the single heroic element in our lives. (67)

Welcome Dr. Raab

Today, St. Patrick’s Day was my first appointment with Dr. Vicki Raab, a neurologist in Ocean.

Today is also a day on which my dear Grandma Nancy, my Mom’s Mom, passed away a few years ago so I spent the morning listening to a lot of Irish music, particularly the Clancy brothers singing Will Ye Go Lassie Go. Grandma Nancy’s mother’s maiden name was Clancy and her own maiden name was McDonald. We are Irish and Scottish through and through on that side of the family~ and then Grandma Nancy married a Russian! We always liked to mix it up.

I love having a car. I love the lengthening days. I love the ring of purple crocuses that just opened. I love the pink cherry blossoms which look like landed butterflies on the end of the tree branches.

And I love Dr. Raab.

She listened to my story. She asked a few questions. And then out of the blue, first thing, she said, “I wonder about porphyria.”

Which you might recall is something I too, since December of 2009, have wondered about.

So somehow we were on the same page. I with my internet medical degree and personal agony and quest, and her with her knowledge and professional demeanor.

She was Absolutely Wonderful.

A medical professional.

She wants to do some tests. Another EEG, and she will call me to come and pick up a lab slip for more blood work. She might want another MRI, and a spinal tap.

My blood pressure was good today. Something like 124/84 or something. We were both pleased and indeed the first part of my day was a pretty decent pain-free/low pain day. I was down to like a 3. This past week has been my best in 2011.

I am filled with a desire to mother. Like I just want to get a diagnosis and get well, and take care of a child who is here and needs help. I know I can help that child. It’s like I know these children who could use love and mothering are all around.

Dr. Raab did the most thorough neuro exam I have ever had, (which just made me sad for the time and money and energy wasted with the neurologist last Fall and with the doctor I had been seeing for the past 3 years). But onward. Forward.

Dr. Raab said, “You look fairly normal on paper, but I know if you are worrying about disability and you are in so much pain, something is not right.”

I asked about my MRI results, the specks and spots, and she said, “We don’t know. What they write is typical. Could be MS. Could be migraines. Could be vascular changes. That is why we do another one also. Each time you are experiencing the severe pain, maybe its one of those spots.”

I went out into a sunny day thinking that this is a real doctor. That this is someone who is going to help me.

Praise Dr. Raab.

Strangely, I now have a terrible headache. Or the start of one. When she looked in my right eye with her light, I heard crackling. And then when I left, a little more right-sided crackling began, and then I went to Trader Joe’s (which just opened here this week and is of course like water to a woman in the desert, how I love Trader Joe’s) and as I walked carrying a basket, on my right side, perhaps foolishly, I noticed I was starting to feel sicker and sicker and the right side of my head was hurting. It is like having a weird tooth ache in a place there is no tooth.

So then my right eye started to pinch down and weep a little and by the time I got back to the car I thought ‘Oh No, here we go again.’ But thankfully I got home and walked the dog and talked to a man in the park who was looking for a ring his daughter had lost, and now I am here and the headache has thus far not gotten worse.

Still, my 3 is beginning to rise.


(angel from a church dedicated to St. Francis of Assisi, NYC)

Seizure vs. Migraine

I must entertain myself with stories and so must you. Do you each day tell yourself a story and reinvent the world, from the crocodile to the shoelace, from the cup of tea to the purpose of the day. Is meaning written in the clouds? Is the mind connected like a balloon to the body? Or is the body connected like an anchor to the ship?

Many things run through my mind like little mice.

The rain falls and the ducks chase each other around in circles. It looks like a game but it probably has more significance to them. Or maybe it is just that, it is fun to run in circles in the rain when you are a duck.

No, I bet it is political. Someone has something to say and someone else doesn’t like to hear it.

I am drinking hotel coffee. My mate and I spent the night near Princeton to offset his tremendous commute. I could not sleep all night but often I am more awake after I do not sleep, and that gave me a thought I will get to in a moment.

In the meantime I got vaguely misplaced on the drive to and fro and so yesterday I visited Jamesburg twice and today East Windsor twice. Also went right through the heart of Hightstown for the first time in my life.

The road is one long pothole.
And I just want to ask the Tea Party folks~ who do they think is going to fix the road? God is not going to come fix the potholes.

By the way, I have been thinking about my god and I have decided I like a combination of Nietzsche’s dancing God, Rilke’s wild-singing God, and Carl Sandburg’s God who gets up everyday and puts on overalls.

Also, my god has breasts. And a tail like a monkey.

Meanwhile, back at the ranch, on Sunday we had the day of ‘Release The Lions’ and so now all three kittens are out of the garage and back in the garden.

Yesterday morning there were bloody possum prints on the backstep. (Nothing to do with the kittens, but for about a week a possum with a bleeding head and a snaggle tooth has been visiting and I so wish I could get it a band-aid or a stitch. The number of very red footprints makes me wonder what has happened now.) We shall see. I imagine my little bloody headed possum friend will return.

I have had three myofascial release sessions and it seems to be helping drive out some of my pain.

Yesterday I had the great joy of being well enough to go and see my lady friends and to play a round of Hand and Foot and one round of Bananagrams. Not enough but at least a good start at getting back to living.

And of course Japan is in my heart and on my mind. Have you noticed how the footage of Haiti after the quake seemed to be all people~ bleeding and crushed and crying and dusty and digging, and the footage of Japan is largely splinters of wood and waves of water and stoic people standing in long lines? Like one was all black and red and animated, and the other was all gray silver and shrouded? Besides the obvious climate and culture differences, why is the media coverage so different? And is this why donations are overall so low, compared to other disasters? Don’t forget to donate if you can.

As for not sleeping last night, it is exhausting in an epic way to spend from 11pm to 4:15 am awake and after hours of ‘doing nothing’ my body begins to ache. It wants to be in Africa and to get up and head to Mpumalanga to see the lions. Or to get up and hike a mountain. Sometimes I can use my insomnia to plan or meditate but last night all was futile. I simply thrashed.

But what I thought about was this. The first thirty years of my life I did not sleep. I also suffered from strange seizures which were quite terrifying and disabling. When I learned to sleep, in my early thirties, the seizures began to back off, until about the age of 36 by which point I was down to about one or two spells a year and they seemed to hardly affect me. I had gone back to college I had abandoned years earlier and was happy in my job and had a very full life. But within a year or two of the seizures fading out, the headaches began.

At first they appeared just a few days a month, but after a year or two, they lasted up to weeks at a time, and finally to every day or night. The first year or two, when the seizures were gone and the head pain was only a week or two a month, even with that level of off the charts pain, I preferred migraines to the seizures. The head pain was so intense and physical but actually less terrifying than the electrical/molecular/spiritual seizure thing which knocked me down and left the world a flat shade of gray. But as of about nine months ago, I was so destroyed by head pain, that for the first time in years I thought, “This is worse. I would take the seizures back.”

Poor brain. What it has been through.

Once you have lost your health, you have nothing else.

But what I thought after last night’s sleeplessness was that maybe I need to stop sleeping, and to see if sleep deprivation would bring back the seizures but knock out the complex migraines. If I slept less and had less pain maybe I would at least get more done. This not accomplishing much and being buried under paper is very uninteresting. Pain in not productive.

Then again, maybe these purple circles under my eyes would terrify the natives.

Though I have been thinking about body paint, and face paint, and perhaps I can go around more like a Maori warrior or an Australian aborigine or the Xhosa people. Or even the Jersey Shore girls.

May as well be honest about my life.

The Sun Dance

While I waited in the waiting area for Session 3 with Olympia, I perused my library book, Integrated Medicine for Neurologic Disorders. There was much said about the trigeminal nucleus and the occipital lobe. I almost understood.

“This indicated activation of the trigeminal neurons responsible for transmission of pain impulses from the meninges. In essence, an electrical event in the cortex resulted in changes in the meningeal blood vessels and activation of the neuronal system responsible for transmitting pain impulses from the meninges to the central nervous system.” (127)

I went into my session thinking about Re examining Life’s Purpose.

On the table I was sugar-cookie dough and she was rolling me out.

She worked on my foot and it was like flippers gently being made into feet.

Then she “rebounded me” which involves one lying limp like a rag doll and her shaking you out. But smoothly. I felt like a mermaid in the sea, washed in the waves. You can feel all your liquids move.

I began to think, ‘Ah, maybe today will be a session without pain.’

Nope.

Then she picked me up by the muscles in both sides of my neck.

Do you remember the Sun Dance the Native Americans do in the Great Plains and Prairie of the west, and how the American government outlawed it and tried to stop it because it is so very important, symbolic, and centering to the people? And how the First People fast and they prepare, and then they dance and pray and sing, and then in some tribes certain warriors cut their flesh open and they are raised and suspended on poles? It’s almost like crucifixion for the sun.

This is where I was transported in session Three with Olympia. My flesh flayed, my body hoisted on a pole, to spin and rotate in symbolic sympathetic magic with the earth, the sun boiling me. The pain a form of prayer.

And then I thought ‘Well perhaps the pain is partly good because it tells the body- You must make opiates. You must.’

I want to give the pain back to itself.

Then she moved my neck and head and I felt like an embryo, like that image of that human embryo when it is only part way grown, and it looks like a fetal seahorse with a strange eye.

In reality, 41 years ago I was crooked in the womb. I came out with a twisted left foot, like I had lain too long in one position, and I was made to wear a special shoe in my childhood.

I still need this special shoe but there it is, lost in childhood, outgrown.

So I have been wondering how one has trouble in the womb, and certainly my troubles were fewer than many. But while being twisted and untwisted in her hands, I felt very connected to beings who experience birth defects, who somehow start to grow wrong, way back in preconsciousness.

She began to reshape my neck and skull, as if before my mother birthed me, but after original conception, she stepped in and began smoothing me.

Then she worked on my fossil egg skull. There was crackling, like static and sparks.

She put her fingers in the back of my head and held my head like it was a bowling ball.

Then she held the top of my skull and I felt it was a turtle shell.

And I felt somewhat born again.

She is working the skeleton.

After these sessions I want to drink hot cocoa. Yesterday I did just that, and also ate a particularly lovely bear claw.

Outside, the purple crocuses have begun showing their color
And the pond is covered with sparkling light.

The Gingerbread Girl

I had my second session with Olympia. Ouch. Ow. Four times I wanted to let out a bloodcurdling scream. Instead I held steady and breathed. She stretched me out like my flesh was gingerbread dough and her arm was a rolling pin. She rolling pinned my neck. She warned me it might hurt. She was right.

And it was good.

And while she worked the body I resolved to work the soul.

I resolved to gently lay down some of the dead.

I had been thinking on things as I had been reading T.S. Eliot’s Ash Wednesday.

I resolved to banish bad thoughts and bad dreams.

And to be mindful that I am on a path of 40 days of reflection, that I first saw Olympia on Ash Wednesday and I shall stay mindful until Palm Sunday, and then there is Easter a week later. And I have some plans for Easter.

I told her that after session one the pain free part did not last, but the hope did.

Olympia has a wonderful soul. She reminds me of a welder or an iron worker.
I said to her, “I enjoyed my brief vacation from pain”, and she said, “You’ll transition to a new state of normal.”

Ah, I do look forward to a new state of normal.

Olympia reminds me of certain elements, her steadfast confidence, earth and horses, wood and metal.

After I left her office I could turn my head further to the left and right.
I felt somewhat less dizzy.

I could feel the physical ability to smile returning, my face is not so heavy to lift, something is not so paralyzed.

And here is some T.S. Eliot for you:

Although I do not hope to turn again
Although I do not hope
Although I do not hope to turn

Wavering between the profit and the loss
In this brief transit where the dreams cross
The dreamcrossed twilight between birth and dying
(Bless me father) though I do not wish to wish these things
From the wide window towards the granite shore
The white sails still fly seaward, seaward flying
Unbroken wings

And the lost heart stiffens and rejoices
In the lost lilac and the lost sea voices
And the weak spirit quickens to rebel
For the bent golden-rod and the lost sea smell
Quickens to recover
The cry of quail and the whirling plover
And the blind eye creates
The empty forms between the ivory gates
And smell renews the salt savour of the sandy earth

This is the time of tension between dying and birth
The place of solitude where three dreams cross
Between blue rocks
But when the voices shaken from the yew-tree drift away
Let the other yew be shaken and reply.

Carrying the dead

My sin or folly perhaps has been carrying the dead too long and not giving them back to God, back to the earth, back to the abyss, to the darkness and the quiet.

If I wore a locket for every loved one who has died, I would be weighed down so heavily I would drown when I waded into the sea.

It began with last rites for my chicken.
Her name was Roulette. The hunting dogs ate her and stained her white feathers red.
I dug a grave in the woods for her, and held a funeral alone.

It began with being born. To me it seems we are born into death as much as we are born into life.

It began with being beloved by my grandfather and him dying.

And the natural order of animals on the farm.

And the lack of certain kinds of safety.

Next it was a friend on the elementary school playground.

I don’t understand how my family mourns.

Some lives are filled with more death than others.
When my step-sister’s grandfather died this winter, it was the first close death she had experienced. She was 38 years old.

His was a natural death, a beautiful old man who had lived a very long life.

People have been dropping like flies around me my whole life.

I do like flies. They come to decompose us.
De compose us.

My grandfather had saved up so many chocolate bars for me that they went stale as they were doled out to me after his departure.

My other grandfather lay motionless in a coffin, leading me to ask, “Why is old MacDonald in a box?”

When blonde blue-eyed Jason, who liked to go shirtless and wore a silver cross around his neck, friend to all, died by leaning out of the back of a pick up truck to admire a motorcycle, our elementary school ground became empty, barren. A long stretch of sand with tire swings swaying empty in the breeze.

I stayed good friends with his mother. And years later when she had a baby with an African man and she was still nursing the child when he was three or four, I saw that she had found a way to move on. But I was still unclear on the process.

Of course we carry the dead.

This is some people’s jobs.

But by about three years ago I think the dead grew too heavy and I grew too weak. There were too many. I do not have the shoulders of Atlas. My shoulder broke. Too many family members and pets and friends exiting stage left, stage right, stage front. Everyone going off stage.

I resolve now to put down the beloveds.

To take 40 days to see how far I can heal between now and Easter.

Earth, are you ready?

I know that you are.

Pin the Devil

Today (March 9th, Ash Wednesday) I saw Olympia at the Lasting Pain Relief Center and it was rather like experiencing a miracle. I left there feeling almost pain free, feeling the least pain I have in weeks, in months. I could see out of my right eye and there were no strange floating bits distracting me. Amazingly, I could lift my face to smile. I felt like my self.

Thank you Olympia. While I was there in her room and on her table I did not want to be anywhere else, the rest of the world did not exist. Usually I have to keep moving because my pain keeps me distracted and uncomfortable, restless, so I move to keep from stiffening up further or feeling my pain grow louder. I move as if I can outrun it, out-walk it, out-wiggle it, out-stretch it. Of course it is futile and exhausting but it’s the best I can do.

Today there was about an hour while I was on her table when I did not move at all. I was as calm and centered as I can remember being. I just breathed.

I realize that this being in pain for so many years has of course unhinged me, and also that western medicine is so anxiety provoking, because when it has no answers it leaves one feeling so hopeless. And even when it has answers it often has no comfort.

Olympia showed up carrying paintings in her arms that she had painted. I was immediately comfortable with her. She did a thorough intake which was more like a conversation and left me feeling like she really did care and was interested. Her questions were so good it helped me to answer them.

And she confided that she had suffered two horse accidents and three car accidents and at one point in her life had been so ill she could not work for three years. Of course that gave me some hope also.

Her father named her.

It is not lost on me that Olympia was sacred to the ancient Greeks, and that the temples of Hera and Zeus were there. The site of the original Olympian Games. And of course the importance of Mt Olympus.

So she did some various assessments and began work on my right hip, with the idea being that my whole body is out of balance and alignment and that if we can work with the flexibility and restoration of the fascia, then we can get me in a better place.
She remained optimistic and hopeful for me.

When she moved onto my neck was when the miracles began. She got hold of a place in the right side of my neck and I felt a tremendously good sort of pain, a pain that was bigger than the usual pain that haunted me, a pain that made sense almost. It was like she had grabbed the other end of the rope that had the painful knot in it. The cobra that was eating my skull.

You know the game Pin The Devil? That was what I felt like. A variation on this. Like she had grabbed it. Almost like we could name it. It had a location. An address. And she has a firm grip and she held it a long long time.

It was like we had accomplished something.

In Pin the Devil you hope to retrieve something that has been lost, by making a counterclockwise circular motion three times with a pin and saying an incantation, ending with “I pin the devil” and requesting your item back, as you push the pin into a chair or couch or wherever.

I might like to stick the pin into my actual head! But really, what has been lost to me is the absence of pain. And so what I hope to regain is this absence.

I want pain to do a big disappearing act. I want my pain free days to return. I have things to do. So, it was like the first step in pinning the devil. In circling. In calling it out. In saying I am separate from this pain. And that I want what is lost, my feelings of peace, to return.

And when she moved onto that point and other parts of my skull, I felt a feeling like I wanted to laugh and cry at the same time, and like circulation was returning to my right cheek, and that maybe I would smile again, and things were possible, and my pain could move on. I had a funny idea that my pain had been so huge that I had actually grown extra nerves to accommodate all the pain and that had backfired of course because now it was just more nerves feeling more pain.

I thanked her for giving that spot attention, that place that connects to my skull that is like a balled up gym sock of tendon or ligament. When she grabbed it I had a flash of insight for a moment that maybe this could be fixed, maybe this was just a problem there with the skull and tendons. I flashed on two ideas at once:
1. Here she was and she had so quickly gotten a grip on the thing which offends me after so many doctors just looked at me as I pointed to the excruciating area and cried out “help help” and at best they looked at me blankly, as if they could not see the spear or arrow protruding from my skull, or at worst, as the doctor last week did, began actually yelling at me repeatedly, “Why ask why? Why are you asking me why?”

2. I thought of the Rilke quote about fearful things just wanting to be loved, or rather “Perhaps everything terrible is in its deepest being something helpless that wants help from us.”

Maybe my pain no more wants me than I want it.

It was like Olympia just grabbed this monster of pain from my neck and held it, held it up in the air, all its limbs wriggling, and she held it steady while we just looked at it a long time, and the whole time she held it I did not feel pain.

And now an hour later I still feel very great. My right eye is lifted up. I am careful though not to turn my head too much side to side as I see it does not like that. But I am hopeful and will see her again in a few days. We talked about my fascia as a shock absorber and about how we can get it back in shape doing its job.

Praise Olympia.

She grabbed the cobra of my pain.

We had some similarities. She is from CA and came here 5 years ago for a man. She misses CA. She will be going there in April for her nephew’s wedding, whom she helped raise after her sister got ill and then passed on.

Being with her was a reminder that I miss my Auricle office and working with clients. It was such a pleasure and honor to work with and help those I could. I wonder what it will take for me to be able to get back to that sort of work in the world. I am hopeful and enjoying what was like a vacation from myself and my pain.

I think people think things like myofascial release is somewhat wuwu or esoteric or spiritual or mystical but Olympia was really rather no nonsense, and almost more like an experienced exterminator who walks into a room where people are cowering because of a ferocious African honey badger (and they are actually quite fearsome and dangerous) but she just rolled up her sleeves and made her way over and trapped it. Like an honest day’s work.

Maybe she is a pain whisperer.

Olympia, the pain whisperer.

At one point I had said I don’t know how my neck and skull got messed up and knotted up like that and she said it doesn’t matter why, we can just go about helping it heal.
Isn’t that nice, just going forward. That is the direction I want to go.

I have reconsidered going to the Bronx tomorrow. It is because I love my car and am afraid that sort of journey might cause it injury. Strangely I am not worried for my own body as I think I can avoid that sort of accident, but the way people drive in NJ and NY makes me concerned my car might not come out unharmed. I have only had the Highlander a month. I don’t really want to take her into battle.

I am ready for my true new moon time. Too long eclipsed by pain. I am ready to move forward.

Bless my ashes. A cross on my forehead. I am ready for forty days of fasting, reflection, and prayer.

Resurrection time, just in time for Spring.

Thank you Olympia.

Facing the Dead End

She was fighting something she could not see. The Invisible Tarbaby.

It was always there and she could feel it, and it was attached to her like a Siamese twin, only in a deeper more nefarious way, as if like molasses it had seeped inside all her cells.

The image of the great molasses factory disaster and molasses flood of early Boston came to her. What year was that? And how many people died? Winter of 1919. Molasses moving down a street at 35 miles an hour. Twenty one dead, one hundred fifty injured. Many horses drowned.

There was also the Old South. There was tar and feathering. There was dark and deep Africa. There were people and there were lions.

Genetics themselves were sticky.

The history of the world. It was filled with suffering.

The pain was often like a black cloud floating in the brain.

She was fighting this thing she could not see. She could not give in to it. She wanted to breathe and keep her head above water, and giving in would mean leaving this life. She wasn’t talking about suicide. She was talking about the feeling that it was like there was a rock growing on a nerve which was attached to the flap that held open her consciousness, and that if the rock crystal grew any heavier or larger it would close off her right eye and plunge her down into an unconscious abyss.

At some point it would suffocate her basic breathing systems, not in her lungs but in her brain. Something was causing a falling down pressure, while meanwhile something else was unravelling.

It was all a circus.

She could also sense the strong will to live. And the trapeze artists throwing new ropes, and bringing in more horses and elephants, trying to erect more scaffolding. Lights and neurons were being strung. There were clowns but instead of their usual antics they were muscled and busy hoisting and lifting and running about with miniature trampolines to catch anyone from the high wire act who might slip and fall. There was still some glitter and sparkle.

And thank God no sign of the clowns on stilts who had so scared her in her childhood.

She did not really know what going mad felt like.
But she now felt certain that intense unremitting pain was one of the pathways there.

She had awakened in the morning with an image that she was a small mouse who had gone a long way down a maze, through twists and turns, thinking it was adventure, thinking it was progress, only to find then that this was a dead end.

The road back was so long. And didn’t all the mazes just end up the same way?

She stood there stunned, facing the dead end.

Was it possible to make the long trip back?

Or could she wait there in her little mouse body and hope and pray and call out, “Hey Researcher. Researcher, can you please start me over at the beginning of the maze? Hello?”

Would the researcher come and pluck her up and start her off again at the beginning?

780.2

Someday it’s all going to be over folks~Make sure you wore enough glitter.

Let the good times roll! Happy Fat Tuesday!

I bee-lined for the bourbon.

I know I sound like a mad drunk or at least a loose lush but the truth is none of it really makes it down the hatch. My head doesn’t like it. Boring old head. But I did bee line for the bourbon for I intend to make a king cake with a bourbon sauce.

Yes, that sounds good. Don’t you think?

By the way, do you know what 780.2 is?
It’s the ICD 9 code many of the doctors used on my insurance and lab slips in the Fall.
It is accurate.
780.2 means syncope and collapse.
Blackout, fainting.

That is me, syncope and collapse.

It is very cold outside but still the bulbs are rising up.
Shouldn’t I too be able to rise up in the cold?

There are three adorable kittens sleeping in the garage and a dog who doesn’t understand why his walk is so late.

The mate will be treated to lemony chicken saltimbocca.

The church bells have ceased to ring at 6 pm.

Tomorrow I go to see a woman named Olympia at the Lasting Pain Relief Center. I am hopeful about her and her myofascial release technique because she was so kind on the phone.

For a few minutes this morning I felt quite well. As soon as I feel well I get excited and plan a life. “Oh,” I think, “I can teach a class at the learning center, humor writing, that is the next class I want to teach. And I can volunteer at the food bank!” I get very excited, a life!

But feeling good doesn’t last very long, just long enough to get me to the gas station and grocery store where I wonder the aisles and realize I feel seasick, my head feels like it is rocking, dizzy, pain builds up in right side, it begins to be hard to see out of my right eye. I become less efficient, mentally and physically.

If you ambulated with ease today give thanks. Do not take this for granted. Now that I am seasick and unsteady on my feet, I realize I had assumed I would always have land legs and perhaps, yes, a steady mind. Take nothing for granted.

So tomorrow Olympia, and my confidence in her, because she so kindly said, “I would love to help you.”

Isn’t that so nice to hear.

And I tried to get in at the Montefiore Headache Center in NYC but they are booked until July, and after April no longer accepting my insurance. But the receptionist was so helpful and said they have two neurologists next door they refer to and she took the time to input me in their system and set me up to see a woman neurologist on short notice, this Thursday.

I hope I am well enough to drive myself to the Bronx. And back.

Here is hoping!

the perils of lepidoptery

Divinum est sedare dolorem.~It is divine to abolish pain.

I read this in one of the many migraine books I have skimmed, blind-eyed and head throbbing.


For the winged creature, the perils of lepidoptery

Like a live butterfly pinned through the thorax to a board

an expansive sheet of white paper, stretching out as far as the many faceted eyes can see.

The butterfly looks alive—but it is no longer.

My pain has me pinned.


Rain. One white duck on a wet pond.

Coffee. The New York Times.

A garage full of crashing kittens. Contrary to what one might think, this is not the sound of happiness.

Head pain has had me in its brutal grip.
Sometimes it’s like I have a strange strangling sac around my brain.
Last night it felt like the whole inner core of my head was raw pulsing hamburger meat.
Today it is as if I will faint on my entire right side, and fall down a dark tunnel, but only after my right ear explodes, like an airbag in a traffic accident.

What good is my knowing so intimately about so much suffering?
I thought I knew this before.

All I knew between 3 and 4 am last night was that I was in severe pain and that I had to find someone somewhere to help me. I resolve to contact the head ache clinics at Johns Hopkins in Baltimore and at Montefiori in the Bronx (my pet-sitter mentioned this place) and see who can or will see me and which I might more easily be able to drive to.

It feels like pressure has forced my skull into the shape of an egg.
I swear it, there is more of a peak on top today.
And in some ways I am drawn taut, like someone initiated a face lift,
Meaning they tried to lift my face from a height.

It remains suspended there.

Meanwhile, some inner magma is forcing the earth’s crust into a peak. Something is pushing out all my bones, making a fossil of me.

This is ridiculous. I am an organ donor, but I would like to continue to use my own organs for a while.

Perhaps it is a good time for Sara Teasdale’s All That was Mortal.

All that was mortal shall be burned away,
All that was mind shall have been put to sleep,
Only the spirit shall awake to say
What the deep says to the deep;
But for an instant for it too is fleeting—
As on a field with new snow everywhere,
Footprints of birds record a brief alighting
In flight begun and ended in the air.

Tea with Ima

Ima was one of the best friends of my life. Today is her birthday. She died five years ago.

And even though she is dead, she is always with me.

We met in Colorado when I was only about 15 and she was perhaps in her 60’s.

She was a children’s librarian and was handling theater props for a production of either Elmer Gantry or Mame that I was going to see our mutual friend perform in. We met briefly in person, passing by each other in the parking lot, but it was really this friend Matte who introduced us by his way of simply saying to each of us, “You would love each other.”

And we did.

She had a lemon tree which grew phenomenal and enormous lemons.

One day in the mail in Washington State where I was then living, a box arrived and inside was this enchanting fruit from a stranger.

The lemon began our friendship and correspondence which stretched on for decades. We did not get to see each other as often we might have liked but she did visit me in WA and I did visit her in Colorado. We rode the ferries out to the San Juan Islands and went to Butchart Gardens in Victoria to see flowers. We walked around Garden of the Gods and wandered around high up in the Rocky Mountains.

And actually the first time we really met in person was in Pennsylvania, when I was on a cross- country road trip and she was visiting her childhood haunts. So I even have a photo of her visiting an ancestral grave. She had grown up in Pennsylvania an only child. When she graduated college she took a train out west to see an Aunt, fell in love with a cowboy, and went home only long enough to pack up and say a fond farewell.

We met up somewhere around Hershey and Three Mile Island (or at least a sinister view of some other nuclear powerplant). We spent the day having lunch and visiting antique malls. She collected ruby glass and refrigerator magnets. She was as charming in person as on paper.

The truth is, everything about her was loveable. It was just the way she was.

Pansies are her flower. Every year I plant a new pot for her, and line the edges of the flower garden with them. At her home she had window boxes filled with them and when I couldn’t see them in person she would mail photos to me.

So we had a virtual tea party of correspondence for all those years. And I can still hear her lovely voice in my head.

The last time I saw her she wasn’t feeling well but we still went to the casino in the mountains of Colorado and I think she still won the nickel slots. We went to Michelle’s and ordered giant hot fudge sundaes. And we sat around and had tea and read books and were cozy. It was very snowy and the moon was full.

We wrote to each other constantly over the years and when she died, I was supposed to inherit my letters to her, and the letters of that mutual friend who had introduced us. Since she was a librarian through and through, the letters were in the top of her closet neatly organized and labeled in gift bags. They numbered in the hundreds.

After her death, her son was cleaning out the house and apparently he took all these letters to the dump. They were never to be seen again.

It was like losing her twice.

Each year I donate some books to her library there in the mountains of Colorado so right now I am in the process of choosing my recent favorites. What are yours?

Today I also especially want to make us a pot of tea, and talk about frogs and sunflowers and pansies and children’s books and Wild West stories and animals and angels and squirrels and bears and pigs and horses and books and the world, and about the lemon that began it all.

Cats and Books

Kaboodle the Feral Fox cat was spayed, not without incident but at least no one was bitten or scratched, and she was tested and found to be healthy and free of diseases. The day before the appointment she torpedoed out of the crate and I spent nine hours chasing her around the garage. This is how I learned she can leap nine and ten feet straight up in the air. I finally caught her but we were both utterly traumatized.

Now, post operatively, she seems to have no idea what downtime or rest and recuperation mean so she is chomping to get out of the crate. I have snagged her brother Tiger from the yard and put him in the crate with her to keep her company and give her some extra warmth. She is eating and purring and bright-eyed so I am happy. Soon this will all be behind her.

Outside the day is frigid and bright. Yesterday I watched the Canada geese peck at the ducks and then grab the ducks by their wings and hurl them around. Such unpleasant behaviour. Canada geese are one of the only animals I don’t feel madly in love with. I don’t hate them, but I might be a tiny bit prejudiced against them. Perhaps I have simply watched too much of their bad behaviour over time. They are however excellent parents and raise beautiful babies. And sometimes they sing very hauntingly.

The baby possum got up from its winter nap and tottered about the yard looking for a snack. I wonder what is milk and cookies to a possum?

My head makes me feel like staying home so I have been finding the spot of sunshine on the sofa and curling up in it with a book. Do you have a book that you are enjoying?

Gretchen Rubin’s book The Happiness Project was as interesting for me to read as staring at a potato chip. I like happiness a lot but in truth I am more interested in meaning and depth. Rubin seems well intentioned but too surrounded by formulas, charts, and spreadsheets. Her happiness did not seem like my cup of tea. On the other hand, I imagine she is unfailingly polite and is raising polite and helpful children and as result we will have a better world. I would like to meet her on a plane or in a public setting. She seems conscientious about how she takes up space and is probably a helpful stranger. But I just could not read her book. By page 20 her truisms like “if you can’t find something, clean up" and “over the counter medicines are very effective” lost me entirely. But I am a 10 on the 1-10 pain scale. So I am cynical.

Meanwhile Nora Ephron's I Remember Nothing cheered me enormously and made me want to eat a carcinogenic pancake with her. She muses easily on random topics, from losing her memory to needing to pitch her Teflon pans. She writes, “On some level, my life has been wasted on me. After all, if I can’t remember it, who can?”

After I read and didn’t read those books I read Gloria Vanderbilt’s A Mother’s Story, a very different sort of tale and very interesting and sad. She is a sensitive and introspective person who watched her son leap to his death in front of her. (And she is the CNN newscaster Anderson Cooper’s mother. Something I did not know, which is neither here nor there.) She describes herself as feeling as if she were always closed off in a glass bubble and writes of lessons learned in childhood, “One of the things I learned very early on was that if you cry you go into the bathroom and shut the door. And when you come out you keep silent and pretend it never happened.”

I moved on to The Day The Voices Stopped: A Memoir of Madness and Hope by Ken Steele, a man afflicted by schizophrenia at the age of 14. Voices instructed him to murder himself and he spent his next three decades in and out of mental hospitals. Finally in 1995 the antipsychotic medication Risperdal becomes available. He tries it and for the first time since he was a teenager the voices disappear. He begins a new life and becomes an advocate for others with mental illness. This book is a remarkably intimate look into his life and made me wonder what things my father suffered that we never knew about. My father too was helped by Risperdal but it became available so late in his life, at a time when whatever had plagued his mind was then trumped by epilepsy and severe short term memory loss.

Next up~Lost Boy, Lost Girl: Escaping Civil War in Sudan. You know the story of the Lost Children of Sudan, I am sure, when during the Sudanese Civil War of the 1980’s and 1990’s tens of thousands of children were orphaned. Apparently many of the young boys survived only because they were not in the villages when they were attacked but were off tending to herds of their cattle. They made epic journeys over land to refugee camps in neighboring countries. A few thousand were ultimately brought to the US. It is said about 17,000 are still in refugee camps in Africa. (And of course there is ongoing war in Darfur.)When I first saw a documentary about their story about ten years ago, I had wished my life would allow me to adopt an entire house full of Lost Boys of Sudan, many of whom were now adults in age. There is still so much to be done, of course. So much need.

And this my friends, is the weird and diverse and random, wonderful, terrible, world we live in, some of it brought to me by my visits to the library.

Until we meet again, here is Ephron’s recipe for the last ricotta pancake she is going to make before she pitches her Teflon pans:

Beat one egg, add one-third cup fresh whole milk ricotta, and whisk together. Heat up a Teflon pan until carcinogenic gas is released into the air. Spoon tablespoons of batter into the frying pan and cook about two minutes on one side, until brown. Carefully flip. Cook for another minute to brown the other side. Eat with jam, if you don’t care about carbs, or just eat unadorned. Serves one.

Determination

How are you?

Are you feeling determined in your life? I hope so.

Alas, I must report that my eagerly awaited appointment with the doctor was bizarre and began with her yelling at me, I kid you not, “Why are you asking Why?” Why are you asking why?” And then she proceeded to say, “You are 40 and you have neck pain. You are pointing at your muscle,” and then to almost shrug, as if this were normal. The scene was surreal. She also made a couple of statements that were lacking in fact, for instance that she couldn’t tell how much pain I was in, because my blood pressure was never that high, when in fact her records are filled with my blood pressure being extremely elevated, like 170/120 when I was in her office in horrible pain in September 2010.

She is the doctor who started me on a beta blocker in the Fall because my blood pressure was so high. This beta blocker may have been why I ended up at the ER a few days later. (I have since learned that beta blockers work by blocking adrenaline receptors. Heck, I think adrenaline may be the only thing keeping me going.)I don’t know. What I do know at this point is that the doctor and I no longer have a relationship. I left there in tears and shock.

Later in the day I called to be certain my insurance was not being billed and that my co pay was reversed. They had indeed billed me and so while I was waiting for the office manager to pick up the phone, I was surprised that instead the doctor came on. She apologized to me, three different ways, and acknowledged that she had not even taken my vital signs. It was true. She just entered that room and quickly began acting unprofessionally. But I do accept her apology. It was eloquent. And I am moving on.

What is reassuring about the awful encounter is that even though I was in severe head pain when I was there, I did not behave in anything but a calm and composed way as she went psycho on me. I said to her, in tears, but looking her straight in the eye, “I hear you telling me you cannot help me” and she nodded and flipped the chart angrily and said, “I have tested you for everything, even Lyme.” Which is also so strange since she has tested me for hardly anything, and the tests that were done last Fall which included Lyme Disease only happened because I went in to her office insisting that we begin testing me for auto immune diseases and Lyme. And doesn’t Lyme also often have a false negative? But I didn’t even ask that. She yelled and harassed me, and I sat there and took it and cried and turned to her and finally said, “Honestly, I am quite shocked by this” and I got up and very slowly walked out of the exam room and down the hall with her following me and then strangely sweet-talking me in front of others, “Just let me give you a referral. Let me give you a referral to a neurologist. Why don’t you come back and we will try to talk.”

It was deranged. When I got to the car I wept and called my mate. He had suspected something like that would happen. (She has been his doctor too.) It had never occurred to me. This doctor had off and on seemed a decent doctor, but often was so distracted and taking phone calls when she was seeing me that I could tell she was not paying attention. But my last appointment with her had seemed promising and she had actually given me a lab slip for some tests which sounded useful and what was her ICD 9 code? It was for hypertension, which I always have when my pain is at its peak.

So what concerns me is that I may have wasted lots of precious time, 3 years actually, thinking my problem was bad periods and cyclical migraines, when it has actually been the case that I have some degenerative and progressive neurological illness.

So, I feel Very Determined to make up for lost time.

I now have an appointment with a woman neurologist in two weeks and I feel that even if she is not the best doctor in the whole world at least
a. she won’t yell at me
b. she won’t tell me that I need to see her husband the therapist because my problem is that I have underlying stress I don’t know about that

No way to go but up from here, that is what I believe.

I also made an appointment with a woman named Olympia at the Lasting Pain Relief Center and will see her next week. She has an office in New York and also near here where she does myofascial release for headaches and migraines.

I have even called my beloved pet sitter and asked her for her recommendations on doctors in this area.

And in three weeks I will also be seeing a doctor who specializes in head and face pain. His paperwork is lengthy but thrilling. The visit will cost $500 and he will spend an hour with me. (Yes, I am 500 dollars worth of desperate. Last night I almost ended up at the ER again with spiking head pain and blacking out.) He is Director of Temporomandibular Disorders and Orofacial Pain at Newark Beth Israel Medical Center.

His practice is focused on “management of the disorders of the temporomandibular structures as well as oral and facial pain.” His intake paperwork reads: “The first visit is usually relatively long. The doctor’s philosophy is that diagnosis is the key. This is essential to proper pain management.” I don’t think I particularly have TMJ but when reading his check list of symptoms I have about all of them: headaches, facial pain, can’t open mouth wide, clenching or grinding of teeth, neck and shoulder pain, tension and stiffness in neck, difficulty in turning head, ear pain, ringing in ears, fullness in ears, dizziness, blurred vision, difficulty in swallowing…Ok so I don’t a painful or burning tongue. But the rest of the list makes me think he knows what is troubling me.

There is also an Absolutely fascinating page with descriptions of pain. Choices like: pinching, gnawing, cramping, rasping, splitting, lancinating, shooting, vicious, killing, piercing, penetrating, exhausting, unbearable, agonizing.

I think this man may be able to help me. We will at least have something to talk about.

I hope you are getting the Last Pain Relief you need, and that you are feeling Determined about whatever it is in your life you want to accomplish.