Memoir: A Tale of Deep Brain Stimulation

deep brain stimulation personal stories
Days later, the neurologist tells me what he thinks I have. I watch his eyes twinkle and sparkle when he says, “You have early onset Parkinson’s.”
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2003

 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?"

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.

Days later, the neurologist tells 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. I am 43. 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.”

 2007

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.

Every day 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.

 2009

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 Sinemet (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

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 (over my left breast) neurostimulator made its presence known by a piercing, burning sensation.

 Fall 2010

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!

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.

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