Ghost Flower & Wind – A Tale of Deep Brain Stimulation

2003

I am memory alive
not just a name
But an intricate part
of this web of motion,
meaning: earth, sky, stars circling
my heart
centrifugal.
—Joy Harjo

A kind radiologist from outside the C-spine MRI tube pats my head and murmurs, “See, you’re not really entirely enclosed.”

But I am.

From another room, the woman speaks to me, but now her voice is disembodied. I hear her through the clicking, banging, and paranormal-like tapping—sound of some displaced poltergeist trapped inside the MRI machine. The radiologist’s distant voice advises: “No unnecessary swallowing, no heaving breaths.” My ears are plugged with putty-like material to soften the eerie clanging of the machine.

I try to keep my body as still as a piping plover nestled in soft, sea sand. I was told to be this still. Then I conjure the image of myself floating in a sensory deprivation chamber. I close my eyes and this seems to be the right thing to do since my ears are already plugged. My ear plugs are blue to match my blue hospital gown to match my blue eyes.

What will the MRI reveal in the seven cervical vertebrae? I think of the number seven. In these seven bones, many things could be found, none of them good. However, they’re not going to find anything. They know and I know there will be no tumor and they will name my illness in merciful terms: movement disorder.

The other side of seven is like fine silver. The seventh day of March is my birthday. In the Judeo-Christian traditions, numerology is integral to understanding many biblical mysteries; the number seven signifies perfection. There are seven colors in a rainbow. In musical scales, there are seven notes. And my favorite: there were seven appearances of angels in the New Testament.

Music comes on. Eric Clapton is singing about his dead son. A long bead of sweat runs down my left side from under my arm. How hard it is to remain perfectly still!

I want to call to the woman in the other room and tell her to ask the poltergeists to stop rattling about with their unbearable chains and then ask her kindly: “Could we perhaps do this another day?"

Once, a woman I knew got up from the delivery table where she was giving birth and said, “I’m not doing this today.” She began to walk out of the birthing room, taking her IV stand with her. An exasperated nurse pulled her back down onto the table and the equally exasperated mother-to-be slapped the nurse so hard that the nurse ran from the delivery room, crying out for help. One can only imagine the befuddled doctor.

There was a birth that day, anyway. I know this because I saw this woman’s baby several months later. I wouldn’t backhand anyone. It’s not part of the seven good eternal things that are listed in Hebrews, in the Old Testament.

I would just climb out of the body brace, unbuckle the straps, slide out of the blue gown, retrieve my jewelry, and leave with dignity. I have convinced myself to do this and am ready to go when an image of my three-year old niece, Emma, holding her yellow watering can floats up elegantly from the shadowy innards of the MRI chamber.

I remember following Emma as she went back and forth with such determination, fetching water from the backyard hose to pour over rocks in a flower garden. She was not interested in the flowers. She wanted to water the rocks, as if they would yield something instantaneously. Emma could barely lift the can, but she refused my help and her sturdy little body tugged and pulled and scooted the can across the flagstone patio. Then, with small exhalations of breath, she managed to tip the can so that the water poured out, all at once. We both watched the water gush and plummet over the rock.

I feel my body relax then as I keep a wistful, dream-state eye on that little girl. No quitting for her, no quitting for me. We will water our rock gardens. We will sit by them stubbornly until they bring us what we hope for, what we desire.

The neurologist has just told me what he thinks I have. I watch his eyes twinkle and sparkle when he says, “You have early onset Parkinson’s.” He is happy that he has ruled out tumors, and Wilson’s Disease. I don’t know anything about Parkinson’s, except that an actor I used to like has it: Michael J. Fox. I know it is progressive and degenerative. I start to cry. The neurologist states the obvious, “You’re having a hard time with this.” In a weak attempt to comfort me, he tells me I am young. I know this too, and it does not comfort me. Then, he inexplicably says, nearly laughing, “Don’t cry.” He is a friendly man, and handsome, but unbelievably emotionally detached. I leave his office thinking, “Yes, everything really is okay, everything is still normal.”

The tremor and stiffness in my left hand and arm is still there, as it has been since 2002, when I first noticed it while hiking. I walk through the labyrinth of the hospital hallways, crying. People I pass stop what they are doing, and look up at me. I don’t care who sees me. I am alone when I get this diagnosis. Why am I alone?

2004

I hide myself within my flower
–Emily Dickinson

This is our third day in Madrid, visiting our son, Aaron, who is attending St. Louis University’s annexed, Spain campus. Aaron has changed. He does not touch me much and his lean frame moves in rhythm with the busy city streets. He takes us through the metro stations at a clip, ignoring the underground street theater, which captivates all of us.

We walk the streets late into the night. The fruit displayed in the stands gleams like jewels. We are staying in the heart of the city in a little hostel for adults, not student travelers. These “mature” hostels are popping up all over Europe, and they make travel more affordable. They are clean, but small, and the owners are young entrepreneurs, mostly men, who are pleasant and helpful. Late-night revelry that we’ve come to expect in European cities keeps us awake until five in the morning. We drag ourselves up, drink the wonderful coffee and visit the Prado. The angst of El Greco’s Christ makes us sleepy, the obscured faces of Goya’s peasants are like distorted dreams.

It rains every day in Madrid. The humidity seeps into my skin. The sidewalks are slick and muddy, but the corner cafes are always warm and sweet smelling. We delight in eating the empanadas, roast suckling pig, lightly grilled vegetables, eggplant coated in spicy batter and deep-fried.

In the metro stations, men from Peru and other Central American countries serenade us for coins and the train slides from one stop to the next.

A woman with stumps for legs and arms sits contentedly beneath a cafe awning. The basket beside her is slowly filling with coins. Street whores walk patiently back and forth right outside the downstairs hostel door.

We are on our way to Granada to visit the Alhambra. We are immediately surrounded by gypsies once we arrive in the courtyard of the Cathedral of Granada. They whisper things to us, click their tongues, wave small pine branches as if anointing us. They hold their hands out and murmur things we can’t hear as if they are telling us secrets. We pass calla lilies that encircle a stone pond with stone creatures whose open mouths spill forth water. Statues of Mary are ubiquitous.

At the Alhambra, we are under Allah’s watch. He, too, must be glorified in opulence. It is still early April, not all the flowers have arrived, but what is here melts my heart: wisteria, lavender, lilac and apple blossoms. Long, marbled ponds of languid gold fish. The Alhambra sits high on a hill and overlooks the red tiled roofs of the town. The houses are close together and all are whitewashed. We spend hours walking through the ancient bathhouses. I picture the smooth-skinned Moorish women unloosening their scented hair. There are fountains and birds, and curled petals of flowers floating in marble basins. There are huge doors with intricate, inlaid designs. I pop anxiety pills to keep my hands from shaking. I don’t want my son to see them this way.

Wet, black stones from the ocean, and black, long-winged birds delineate the Costa del Tropical and Costa del Sol. We stop at Marbella. We stop several times to look below cliffs at the siren magic of the Mediterranean Sea. Whitecaps and wind. Soft sand beneath my feet. I take photos of my mom and dad, who have accompanied my husband and I on this trip. They look happy.

Madrid will always remind me of hyacinths, roses, and camellias. I also remember Spain as the time before I started my Parkinson’s medicines. I could still walk long distances without having to pop Sinemet, but I was tired. I was even feeling too sick to go to the Palm Sunday procession, so my mother brought me back bundles of olive branches, rosemary, and drying lavender tied together with a white ribbon.

I am in Santa Fe, New Mexico at St. John’s College teaching Native American students how to write college application essays. Lining the pathway to my little dorm where I am staying, are yellow flowers, and soft sprays of purple thistle. My suite mate, Maria, stops to run her fingers across the leaves of a pear tree. She bends to squeeze a berry from a bush. One night she drives me up a winding road to the Tesuque Pueblo and we watch a sunset that mesmerizes me with its seascape beauty. There must have been an invisible ocean somewhere because the sky is crimson like it is reflecting water. But I know there is only the desert.

In town, we visit the churches of the Spaniards; silent, stucco palaces of Christ. These monoliths of pride do not steal my breath away like the bronze statue of La Llorona does. Her story is old and frightening in its complexity of meaning. La Llorona was a women who loved too deeply. She loved a man and when he abandoned her, she drowned her children. She is said to wail through nights as she searches for her lost children. Even behind a shop window, surrounded by gentle, watercolor paintings of flowers, and Acoma pottery, and jewelry, I stop and think: She is waiting for me. Her face is obscured behind her long cloak, but her hands, deformed and pocked, grasp the chair in front of her and she leans toward me. On her feet she wears old boots. Her knees protrude from under her creased skirt. So perfectly has the sculptor rendered the shape of her head, she looks as though she is moving, and preparing to speak to me. I strain my neck to see her face better but the sculptor was a trickster. I can never clearly see her face. At night, even after being with the faculty and students all day, I can’t sleep. The air is cold, the coyotes are relentless, and La Llorona drags her cart of bones through arroyos, crying for her drowned children.

2005

Do all you can to become a bird of the Way to God;
Do all you can to develop your wings and your feathers.
–Farid ud-Din Attar

My friends and I traveled to Socorro, New Mexico to watch the sandhill cranes and snow geese fill the sky. Scott, a fine photographer, needed to be up at sunrise, and present during sunset. I had never seen a migration of thousands of birds, so during the three days we were there, I wasn’t even thinking about the chilly mornings and evenings. The first sunrise, I wrapped up quickly in wool sweaters and a down jacket and, coffee cup in hand, set out with Scott and Mary Jean to witness the beauty they had, for several years, been trying to describe.

At first, there was no sound, no movement in the briny marshes, but through the mist, almost imperceptible, you could see all across the marshes and ponds, hundreds and hundreds of birds. They began to call out to one another and gradually the riotous clamor of their wings took hold of the morning air. First the snow geese rose like tidal waves. The pond water turned from black to gold and soon layer upon layer of sandhill cranes lifted upward, their wings conjuring a sea-sound, and with sound came a discernible color in the sky: a shimmering lapis blue mixed with pink ceylon. These colors erupted over the tormented semi-arid landscape, and then I thought I could smell saltiness somewhere— an allegiance of brackish lagoon and briny tide pools. There were other wonders: the rainbow cacti, bulrushes, and rust willows. Other winged creatures came too: roadrunners, coots, blue herons, blackbirds, and pheasants. But nothing could compete with the configurations of snow geese and sandhill cranes—the emergency of their flight, and the way they seemed to hold one another up against a shift of wind, a flush of rain. We stayed all day and far into the night watching them.

A prayer comes, many weeks later, when I rise one morning and there are just small, winter birds here at home. I think about the elixir of wings and birds; the small charm of a sparrow’s body. All of us are like birds; swirling souls clinging together.

2007

Not all bodies are recovered
–D.A. Powell

My husband and I spent Thanksgiving with my sister, Claire, her husband, Andy, and my niece, Emma. They live in the Bay Area. Of course, I begged them to bring us to Half Moon Bay. Happily, we did not see any signs of the recent Bay Area oil spill, though a ranger told us we might. We did see tiny snowy plovers nesting deep in sandy footprints. They seemed unconcerned by the surf. They would fly up all at once with such clean incision, like white crescent shells cutting the sky.

Everyday I am frantic at the thought that I am taking too many pharmaceuticals. My sister sees my bottles on the bedside table and exclaims at how many there are. I am ashamed and embarrassed. Sometimes I confine myself to a room so that no one will see my hands shake. I wait by myself until the time for my next dosage of carbo/levodopa. It is that way.

2009

To live is so startling it leaves little time for anything else.
–Emily Dickinson

The scary visit with Dr. L. that I had conjured in my own head was not so scary. I am on a new drug therapy until I can get in to start the process of deep brain stimulation (DBS) surgery. I started a dopamine agonist. It has already allowed me to reduce my carbidopa/levodopa by 400 mg. Additionally, Dr. L. said I was an excellent candidate for DBS. I am young, healthy, and strong, with no cognitive impairment. I have to be screened though, which will include testing for cognitive impairment. Everyone I know has been complaining about my weight, and Dr. L, who is much like a pale bone also, assured me that the typical post-operative DBS patient regains at least 10 pounds. That extra poundage would put me in size six pants; I am a size 2 now and shrinking fast. The pharmaceuticals suppress my appetite. I grow nauseous even looking at food.

2010

From the throat of a woman who keeps on singing,
day rises nobly evaporating toward the stars.
–Gabriela Mistral

I am obsessed with how I look. This is nothing new. I learned this through familial habits. In my family, when you haven’t seen someone for a very long time, you must first comment on how good they look. Later, after the niceties have worn thin, you can expect a sister or someone to coldly remark: “I really don’t like your new hair cut,” at the most unusual times, when it completely takes you off guard and you can’t respond appropriately; you just reel. However rude this may seem to “outsiders” of the family, it really has been a remarkably useful attitude to have when it comes to rallying oneself to go through rigorous pre-surgery “exams.” The exams I am referring to are what determine eligibility for deep brain stimulation surgery.

DBS was first performed in 1987, but really didn’t garner much attention until various articles and white papers began popping up around 1993. I found this out by searching the Internet. Medtronic, a company established in 1949, literally out of an engineer’s garage in Minnesota, took the lead.

DBS is a procedure that entails implanting a device much like a pacemaker in the chest. This device sends electrical stimulation to specific areas of the brain through insulated wires that are implanted within the brain. This stimulation enables a person with Parkinson’s (PWP) to move more freely without having to take as many pharmaceuticals, all of which have nasty side effects. DBS is also used for people who suffer from benign essential tremor.

There is some absurdity to becoming eligible for DBS. Part of the absurdity has to do with the insurance companies. You have to demonstrate a certain level of cognitive impairment—but not too much and not too little. This fine line between the two stages of impairment is never fully explained to the patient.

The first two days of testing were exhausting. At the University of Colorado Hospital, they said they were “fast-tracking” me since I’m young and healthy and slightly “unusual.” I am suspected of carrying a Parkin gene mutation that manifests itself in obsessive-compulsive behavior and other weird habits, not to mention the bad dystonia in my feet. Everyone finds the obsessive-compulsive trait interesting. I do not. I’ve lived with it in my family for years. It inevitably ties itself in with the obsession concerning appearance.

The first day of cognitive testing was easy. Dr. K. asked me to spell “world” backwards. This was easy enough. Then she began the little games: she would say a series of random words, a sentence, and a short story, and I would have to repeat them back to her word for word. Then 15 minutes later, after various other tests had taken place, she’d ask me again to repeat those words, sentence, and story. There were drawings I had to do: particular geometrical shapes and spiraled circles. I was asked where I was, what day it was, what year, and the president’s name. All of this has to do with things like visuospatial/executive, naming, memory, attention, language, abstraction, delayed recall and orientation. My oldest son told me, in his wry fashion, not to worry too much about the visuospatial cognition test. I will most surely fail it, he stated bluntly. “You know,” he said, “Women don’t drive as well as men and they can never parallel park because they have very limited visuospatial cognition.”

Dr. K. also videotaped me saying certain things and forming silly facial expressions. I’m told the six-hour neuropsychological cognitive test is much harder—more math and they take your level of education, socioeconomic, and ethnic background into consideration as variables.

The obsession with appearance kicked in on the second day of the pre-DBS testing, I had to be off all my medications for 12 hours. I was in a panic over this, so Dr. K. said I could remain on my anxiety medication. However, anxiety medication doesn’t do much for me in the way of walking on dystonic feet. I absolutely refuse to look bad and I knew without my meds, if I slept, I wouldn’t be able to move in the morning. I devised a little trick. I gave myself a pedicure the night before and dressed myself completely in what I was going to wear the next day. I placed waterless facial cleansing pads next to my bed and a cup of water and my anxiety pills. I stayed awake the whole night watching movies. So in the morning, my body was still alert and I could actually wash my face, brush my teeth, apply makeup, put on jewelry, etc. With PD, if you sleep, no dopamine is produced, so you wake up stiff as wood.

I still had to take a wheelchair into the hospital though. And sure enough, as Dr. K. was videotaping me walking down the hall, my feet did what they do if I am not medicated. On the walk back down the hallway, they simply would not go any further. They twisted inward and then my arms started to twist inward. Afraid I would fall, which I would have, they rushed the wheelchair over. I felt fragile, as though La Llorona’s determined hands had just snapped my bones, and I was helpless beneath murky waters.

The preliminary tests with Dr. K. did not just end with her. Once I was allowed to take my usual dose of medicines, I was sent over to speech therapy and rehabilitation therapy. There was a possibility that each might play a role in the recovery process. Each of these departments would also have a say in whether or not I should be allowed to have DBS. The physical therapist who had her own battery of tests, as did the speech pathologist. The speech pathologist had a very tiring and ridiculously outdated variety of tests.

But these people, including Dr. K., were still not the ultimate judges of my eligibility. This final judgment belonged exclusively to the mysterious neuropsychologist who would administer a six-hour neuropsychological exam. By joining a DBS support group, I was able to get my hands on a study sheet. This sheet gives you examples of some of the tests they may ask you to perform. One of the tests entails naming pictures such as an elephant, a lion, or a camel. Then another test has you reciting as many words as possible within one minute that begin with a particular letter. What if the letter were “F?” Knowing myself, I’m sure the word, “fuck” would fly forth unencumbered.

Amazingly, what has me stumped is the test where you must verbally repeat a story that you’ve just heard. Being a poet and writer, one would assume this would be easy for me. The attention to fine detail is essential and important to me. Then, I began to look at the story lines carefully. The plot is relatively simple but rendered more complex because it is packed full of prepositions. There is also a certain order the words must go in so that the plot actually makes sense. Take for example: “The cat always hid under the couch when dogs were in the room.” In this sentence, they throw in alliteration: cat/couch, when/were, as well as punctuate it with prepositional phrases. The plot is logical and, one would think, easy to remember. Another sentence uses assonance, and is neatly set to to a rhythmic beat: “I only know that John will help today.” I should be joyful over this, but as a poet, I know these are complex devices invented to, as Emily Dickinson said, “tell it slant.” All of these tricks only make the sentences harder to remember once you’ve gone through another round of completely different tests. After 15-20 minutes of these cognitive tests, you repeat the story. This is known as “delayed recall.”

There’s nothing compelling about testing the brain because nobody really knows anything at all about the brain. Love is really the only thing that I hope to remember if my cognitive abilities are deemed impaired or if, in the future, they become impaired. I want to remember what love is in all its myriad shapes, and in all the ways it manifested itself throughout my entire life. Now, I envision La Llorona as a woman, much like myself, struggling to retain the essence of beauty that love begets. Her face emerges from the shadows of Spanish churches. She has become Mary, gently cradling roses, not bones. She is singing, and she invites me in.

I had to be off all my pharmaceuticals the night before my first of three surgeries. My mother came out from St. Louis for the first two surgeries, which were a week apart. For the first surgery, I had to wake at 3:00 a.m., which allowed us adequate time to get to the University of Colorado Hospital in Denver from our home in the foothills below Estes Park.

During pre-op, they actually had to use a pediatric blood pressure cuff around my arm because I was so thin. I was hooked up to a million different IV’s, and my head was fitted into a Frankenstein-like, aluminum brace that was literally screwed into both temples and both sides of the back of my head. I was given a local anesthesia in all four places, and put through a CT scan. In the OR, I was given a light sedative, catheterized, and the first entrance to my brain was drilled. They woke me up to determine where the leads (wires) would be best placed. A nurse moved my right arm, leg, hand, and foot in various directions until the neurosurgeon was satisfied he had hit the “sweet spot.” The surgery lasted four hours. I stayed one night in the ICU, and was awakened every two hours to make sure the leads had not migrated, and there was no infection.

My head was terribly sore in the morning, and I could see the staples in my head. The areas where they had drilled were red and tender. My friend Barbara, who had spent the night with me, helped wrap my head in a bright, turquoise scarf I had purchased the week before.

The second operation was just like the first one, only this time I woke, unexpectedly, during the drilling. I couldn’t feel anything, but the sound was like someone drilling through sandy rock. I could smell burning, and as I slipped back into sleep, I thought of miners chipping through rock, and how bone eventually dissipates into sand.

The final operation entailed implanting the neurostimulator. This would be programmed through a hand-held device that would send electrical currents to the receptors in the area of my brain that allows my body to move naturally. The programmer is initially set at a certain level by a nurse practitioner. The implantation was an outpatient procedure, yet I was completely anesthetized. My sister, Laurel, came out to stay with me.

After recovering from the anesthesia, I was allowed to stand and dress. Each time I moved my left arm, the implanted neurostimulator made its presence known by a piercing, burning sensation.

Once at home, I slept deeply for a day and then became restless. I needed to get outside and feel the warm, late August sun on my face. I asked my sister if she wanted to walk down the road to the pie shop just off our road on the highway leading up to Rocky Mountain National Park. My neurostimulator had not yet been “turned on,” but the placebo effects the neurologists had said I would experience were definitely present. I did not need to take any of my L-Dopa because there was no tremor in either hand, and I did not have any dystonia in my feet. I felt brave enough to make the quick jaunt to the shop. Laurel willingly agreed. Under the steady, warm sun, with just a skip of wind, we walked down the fire lane, down past the long yellowing grasses, following the dirt road’s twisty turns and forks until we arrived at the shop. We ordered lattes and bought a strawberry-rhubarb pie. On the way back up the long hill, we took turns carrying the pie and I watched Laurel's body move lovely against the blue sky. I noticed how the years of ballet had shaped her arms long and lithe. There were birds in front of clouds and they seemed to be whispering words into my head—words like chassé, eleve, fouetté, glissade. This is how I will always remember that time with my sister.

Fall 2010

The further you go into the desert, the closer you come to God.
–Arab Proverb

In October, when my head was still wrapped in scarves, I decided I needed to go to the desert. I found a group of friends who were going. We commandeered a great campsite and set out one morning to explore a trail called Hidden Valley. We were searching for petroglyphs we had heard were there. This took some climbing up over crumbling slick rock and sliding a bit on scree until we reached the tops of ridges. We walked along until we began to see the petroglyphs emerge from the sun-soaked vertical rock faces. Panel after panel of strange-shaped humans, animals, circle designs, and stories told through pictures. We had to look really close because sometimes the glyphs just disappeared into the rock face. We stayed up on those ridges for a long time, running our fingers over the petroglyphs, the outlines of ancient stories. How much I longed to stay in their mute presence! The only test they might ever administer would not include words, but a healing mystical silence.

At night, the desert is still vitally alive. I sat cross-legged in front of my tent, my head tilted back to take in all the millions of stars and the sparkling, large planet Jupiter. I only saw one falling star, but I heard coyotes and skittering lizards. I watched the sky until the cars from the distant road sounded like ocean waves. I dreamt of finding a desert ghost flower.

An ancient Chinese medical document, the Huángdì Nèijīng, states: “The hundred diseases develop from wind.” Sometimes at night, the desert’s wind is relentless and haunting. The wind reminds you that the terrain is not benign; it is hard and immutable. Yet, I forget about everything when I am there—my illness, my worries about the future—and just rest, swept up in the desert’s ancient soul. There is nothing more I can do. I think of the timelessness of the cryptobiotic crust and the petroglyphs. There is nothing more I can do. The more I repeat this to myself, the more I find I can accept the emptiness of unknowing.