In 2018, the Venezuelan poet Jacqueling Goldberg traveled to the United States to participate, as a writer in residence, in the International Writing Program at the University of Iowa. During this trip, with the hope of determining the origin of the myoclonus dystonia that she suffers, she had the opportunity to have a genetic evaluation that was impossible to perform in Venezuela. Goldberg wrote this story about that experience, which will be the epilogue for her book El cuarto de los temblores.
Translated by William Blair
During a ten-year period, I wrote a book, El cuarto de los temblores.
The book was published and read; it spoke to others who also tremble.
But. I tremble. I still tremble.
I thought I continued to tremble for what I still wanted to know: themitochondrial secret in my nerves, my shoulders, my arms, my hands.
I yearned for my blood to speak, for my genes to confirm my distress.
Between August and November of 2018, I spent eighty days in the United States, in Iowa City, invited as a resident writer in the prestigious International Writing Program (IWP) at the University of Iowa.
A physical and spiritual journey.
A foundational journey. Without any setbacks.
Iowa was a place of revelations. In this yellow Midwest I could write, be silent, and walk next to a river. I could have the blood test I so longed for; the test that would disclose the weft and warp of my genealogical tree, the details of my past, and the future of the generations to come.
I arrived in Iowa City on August 19, after four airports, two nights in hotels with windows peering on a control tower, three tiresome days.
It was Sunday. My family was commemorating the first anniversary of the death of my father. My mother and my brother were too far away for the hugs and tears.
Iowa was no spiritual refuge.
The writers in the program participated in countless activities. On Fridays at noon, we read at a roundtable in the Iowa City Public Library. I presented my talk on September 14 on a panel titled On the Body, together with colleagues from Jordan, Pakistan, and Armenia. I spoke about my book and about my tremors; through my writing, about my body; and about the examinations that since infancy have indicated normality. I told about the genetic study that had eluded me because it is not done in Venezuela, because it was always far too expensive, because almost everything in my life is diluted by priorities.
One week after that event, I received an email from Christopher Merrill, a poet and director of the IWP. He said that he had enjoyed my presentation, that he had sent the text to the neurologists at the university, and that Dr. Christopher Groth was interested in my case. Surprised, touched, grateful, I responded immediately. After closing the email, I cried. Even knowing how reputable the University of Iowa is for its hospitals and research, it had not occurred to me that I could have my genes analyzed there. I had not understood until then that, finally, the study was in the distance, a possibility.
Translating the voices of the body?
It’s an uphill battle. I would corroborate that in Iowa.
It demands a separate grammar, a verbal expression of flesh that’s rid itself of human Laments.
A student from the MFA in translation tried to translate the first pages of my book. We started badly; we ended up worse. I found myself explaining in Spanish and English metaphors that to me cannot be reiterated.
She called my tremor a shake, which alludes to a shaking, a movement, a flapping.
I preferred tremor, a word of Latin origin that in English equally signifies trembling, a tremor, shuddering. We were both right.
In my brazen ignorance I asked myself why Siri Husdvetd titled her book The Shaking Woman or a History of My Nerves, and not The Trembling Woman, or The Tremor Woman, or The Woman Who Trembles, or A Woman with Tremors.
The English language is my Sagarmatha (the forehead of the sky, in Nepali), one of the two names they call Mount Everest. I have stopped trying to understand its logic. I know I can navigate it with exhausting effort. I know I can listen to it, read it, and make myself understand but never endear myself to it.
On Friday, October 3rd, we arrived before four in the afternoon at The Java House, a coffee shop on the ground floor of the Roy Carver Pavilion in University Hospital. I was accompanied by someone from my own country, Oriette D’Angelo, a writer who at the time was in Iowa City pursuing her MFA in creative writing. The place smelled of spices—cinnamon, cloves, ginger, nutmeg—of that very strange pumpkin pie latte that Americans love on those days close to Halloween.
Earlier, Oriette had shown up at the Iowa House Hotel in an Uber. Continuing, we walked to the other side of the river. Fall was already fulfilling its ambitions; it had colored the leaves of some elms, oaks, walnuts, ginkgoes, and maples. It was cold. I was wearing sandals so I could undress more quickly.
Dr. Christopher Groth, an assistant clinical professor of neurology and an investigator specializing in dystonia, recognized me as soon as I crossed the patio. Immediately and from then on, he was very friendly. We conversed on the rooftop terrace, at one of the scattered tables, shaded in the late afternoon. We didn’t imagine how much the wind would blow my hair around, create nonsense of my words, leave me trembling from the cold.
Groth asked questions, the same ones that, for more than fifty years, I have answered for doctors from different specialties. He watched me talk and tremble. He bent his head down to observe how the big toes of my feet flexed and extended of their own volition—those two toes, each with two very small sesamoid bones that fractured once from the effects of the dystonia, and it ached with an inconsolable, deafening pain, leaving me to suppose, in the insomnia caused by their manifestation, that I had inherited the bunions of my maternal grandmother.
Oriette had to act as my translator. My English, more Himalayan that day, deserted exactitudes. We talked about the genetic evaluation, about what I already understood: trying to find out more would be a futile exercise, the results would not change the meanderings that travel through my body. I would go on trembling. Groth reiterated, based on simple clinical observation, that there was no doubt that it was myoclonus dystonia syndrome. A certainty, at least. Just the same, I needed to know more. I didn’t intend to give up my left eye—like Odin in his eagerness—to access infinite wisdom, perpetual intelligence, or the honeyed water of poetry. I only wanted to peer into the pool of my chromosomes, into the calm that allocates truth or reality, which are never the same and, besides, lie.
Still, I believed that knowing would calm my worst tremors, the invisible ones, the ones in my nightmares.
Out of a million people, one to nine have myoclonus dystonia syndrome. I am one in a million, just like in the song. The loneliness, here by my side, is a dark clumsy thing, a dim future, a rumpled refuge.
I possess a maternal imprint.
We believed that I inherited it from my father, and he from his mother.
We thought that if my son inherited it, he would remain healthy, that if my son had a son, he would pass it on, that a grandson would not have symptoms, and that a granddaughter could be like me, trembling and anxious. Inheritance is such a bitter, contemptible journey.
After some online exchanges, we scheduled a date to draw the samples that would be sent to a laboratory in San Francisco, California. I was getting closer to the cruel lexicon of my DNA.
“I profess fear, make the sign of the cross, and tremble
as no stone ever trembled,
like the hesitation, cold, or fever
the universe could never feel.”
Song to Orinoco
On the way to the hospital, I was surprised that it was October 23rd, as if I had been living not only in a foreign territory but on a foreign calendar. It was my father’s birthday. I still don’t understand the message of such synchrony.
I didn’t want to go alone. Marianne Malli took me. She was a writer working for the IWP who usually drove us to events and to the store on Tuesdays. We became very close. She spoke a little Spanish and understood it very well because she lived in Barcelona during the years when she was a sought-after model.
We had barely arrived at the Neurology Department on the second floor in front of the elevator when a translator appeared. I don’t remember having mentioned that I would need one. She was an elegant, older woman. Curiously, she had lived in Venezuela because her father worked in the petroleum industry in the seventies. We talked about the political calamities, of the better times when she lived there, the times I barely remember anymore. Not even in that moment so sacrosanct could I escape from listening and talking about the bottomless ruins of my country.
After a long wait, a secretary had me proceed to a small cubicle. After another interval, they switched me to a different cubicle. Finally, Shawna Feely appeared; she was the genetic counselor with whom I had been emailing. Before I saw the needles and cotton, she submerged me in an interminable questionnaire with little drawings and diagrams. I should have said how little I knew about my grandparents, great grandparents, great-great-grandparents, their ashes in concentration camps, the lost route of family pathologies.
Feely again explained to me what I was sick and tired of knowing: the genomic search would not alleviate my symptomatology. I should have repeated that it was an old hunger of mine.
While they drew blood from me and the translator continued to ask questions that mattered only to her, Dr. Groth arrived to say hello. An angel. We took a photo together. It was an important day.
After leaving the hospital, Marianne asked if she should leave me at the hotel. I said I would continue with her wherever she went. She was going to the Shambaugh House, the beautiful and historical IWP headquarters on Clinton Street. I didn’t want to shut myself away in my room. My tremor already causes enough disaffection. I remember clearly that there was no place nearby to park. We walked along many streets carpeted with crisp leaves. I have photos of the yellows and reds of that midday.
That night we went with part of the IWP group for dinner at a Japanese restaurant close to the pedestrian plaza. We gathered at a long, noisy, multiethnic table. Adriana, Ausra, and Baysa—my closest colleagues, from Ecuador, Lithuania, and Mongolia—knew about my hospital excursion. They told the group, and we toasted with sake to my singsong genes, to that day of miracles and thankfulness. A photo, taken by a waiter who climbed onto a chair so we would all be seen, records the collegiality.
I’m revising these pages in the middle of the Covid-19 pandemic. It is February 28, 2021, World Rare Disease Day. Myoclonus dystonia is that.
These are times of great silence. In the street, at home, especially in the cooking pots where the future thickens. That’s why my body has become more solid than ever. I have experienced the symptoms of Covid-19 at least a dozen times, I could hear the intense activity in my bones, the proliferation of my throat’s cells, my thoughts.
On February 2, 2021, Paula Dueñas, a young woman from Puertollano, underwent an operation in the Vall d´Hebron hospital in Barcelona, Spain. She has myoclonus dystonia. The disorder had worsened in the last two years and the insertion of a device that produces cerebral stimulation was indicated. It is a delicate operation that has given hope to the medical community and to patients.
I am reading about the indications for the intervention; I imagine myself being wheeled into an operating room, awakening to a life without a tremor.
The neurologist would make two burr holes in my skull.
He would place two electrodes in the globus pallidus of my cerebrum.
He would assure, with two metal plates screwed to my head, that the electrodes could not move. Cables would come out from the base of these plates and, unseen, run along my body, under the cutaneous tissues, until arriving at my abdomen.
Paula was eighteen years old, her whole life ahead of her.
In a few months I will celebrate my fifty-fifth birthday. In this pandemic world, in my necrotic country, trembling is the least of my worries.
They promised that the results would arrive around November 23rd. Around my birthday. A gift.
They arrived much earlier, the first week of the month.
Two days passed before I had the proper courage to open the email from Dr. Groth. Many more days passed until I could tell my family the results. More than two years passed until I could write about them.
The genetic evaluation with which I, with so much hope, had used to battle arrived mute, in the past tense, extinguished.
The genes that were examined showed no anomalies.
Dr. Groth was sorry that he could not provide me with more details about my condition: “Then, as we discussed in the past, this result doesn’t change your diagnosis, but rather says simply that we don’t know the underlying reason for your myoclonus dystonia.”
I was sorry about my blood’s useless peregrination. Again, it imposed on me ignorance, oblivion, patience.
The clinical summary advises that the negative result of a test does not eliminate the possibility that my condition has a genetic origin. They had already told me that there is a small margin of error in the tests, that maybe my disorder isn’t even identifiable, that in the future there will be more precise genetic tests. Also, it seems that it could be a de novo mutation, one that appeared for the first time in me, in my family, a result of a new mutation in one of my father’s cells or in the zygote that I once was.
Prior to these possibilities, I preferred to think I was a mutant, a character in a science fiction comic book written by Stan Lee, a subspecies with powers and superhuman abilities. Perhaps they could call me X-Jacqueline, and I could wear a long violet cape created by Edna Moda, the costume designer for The Incredibles. But no. I do not have superpowers, and the writing—which usually seems to be this way—sometimes hurts and tires me out, is a melancholic thing, an exile.
What remains of Iowa?
I tremble. I just tremble.
Since I returned on November 6, 2018, everything in my country has gotten worse. Power outages, a water shortage, a humanitarian crisis, fear of being out in the open. Since March of 2020, the pandemic, confinement, fear of others.
Meanwhile, my body has opted to speak out loud.
At times it hurts. My gait is more contorted; I find it more difficult to handle a pen. A round mass has developed on my left shoulder. My toes spasm for somewhat more prolonged periods of time now, as if they want to separate themselves from the semiotic disaster of my bone marrow, to detach themselves, to return to the refuge and the promise that was Iowa.
Poeta, narradora, ensayista, editora y autora de libros infantiles y testimoniales. Anhelo un género que lo contenga todo, una gramática del silencio y la poesía.