a frayed thread
on epigenetics, ancestors, & how medical trauma weaves through generations | essay | from the archives
I started this newsletter last month, rather impulsively, fueled by the hot burn of inspiration after the first meeting of a new writing group. Then, I took
’s excellent class, “Getting Platform Right,” only to learn that impulsivity is the opposite of what I should be applying here. Oops. Then, I entered the last two months of dissertation writing. In a word, stressful. So why would I start a newsletter right now? I’m a multi-passionate person that wants to do everything, all the time! AKA I’m a highly delusional over-achiever!1For now, I’m pivoting. In the coming months, I will share mostly past work in a monthly post. Starting in September, I plan to share more frequent original posts including, for example, my many current thoughts about the intersection of doing a doctorate and being a human with chronic health issues.
In the meantime, please enjoy an essay I wrote in 2022 that won 3rd place in the Hal Prize for Nonfiction, a contest run by the Peninsula Pulse of Door County, one of my favorite places on earth.
A Frayed Thread
Our ancestors are woven into us, into the fabric of our lives, our bodies, and our deepest, truest selves. Their stories, told and untold, thread through our lives whether we notice or not. So, I’ve begun to pay attention, to follow my ancestors as characters in a story whose path I already know leads to me. And in my mother’s line of mothers, I see a funhouse mirror. Repetitions of reflections, and in each I see my smile, my water-blue eyes, and I see worry, worry, so much worry. That patronizing word that really means fear, but doesn’t acknowledge the depth or magnitude of respect that fear demands.
I thought I was alone, but look, I’m not.
Somewhere along the line, one of my ancestors experienced a gene mutation that modified their antithrombin III gene. It caused, in them, a shortage of antithrombin III, one of many proteins in a complex system that forms blood clots in the human organism. It’s a system evolved to protect us, a micro-safe harbor in the body to address physical trauma, a self-healing system. But some ancestor passed that abnormal gene down to me. And that shortage of antithrombin III landed me in a hospital in Minneapolis fighting for my life at age 21, subject to the invasive whims and curiosities of doctors who I had no choice but to trust knew best. And that is when I came to know fear.
Congenital antithrombin III deficiency is a genetic disorder that causes blood to clot more than it should. Possibly half of people with this disorder live their lives without disruption, with no dangerous clots at all, without even realizing it. I was not so lucky, but I was lucky in that I survived the clots that formed in my legs and moved into my lungs. Antithrombin III deficiency is hereditary, a nonnegotiable thread woven into my ancestral fabric. But despite its constant presence in my life, I know little of how this thread twisted through the fabric of my ancestors’ lives. Who wove this thread into my life?
My mom has the deficiency. It is etched into the veins of her legs in scar tissue, untreated clots that somehow grew and dissolved, untreated over the years, subject only to my mom’s silent perseverance and determination that nothing is ever wrong. My doctors suggested that the deficiency could have been responsible for my mom’s stillborn daughter, still nameless 40 years later, stolen away at the hospital before my mom could even see her face. It was that loss, along with the loss of her baby Nathan, only six days old when an aneurism killed him, that taught my mom about fear.
My grandma also learned about fear early in her life, though not as early as her mother, Nellie. When Nellie was 12 years old, growing up in St. Charles, Minnesota in 1891, she complained to her father, Hugh Foley, that she had bad pain in her chest and could not breath.
I know this feeling well.
Hugh did not believe her. I know this feeling well, too.
When I was 21, I went to the campus clinic, unable to take a full breath. The doctor sent me home with an inhaler, misdiagnosing me with a new allergy. To what, he was not sure. For four days, I walked through life painfully slowly, one step after another, unable to catch my breath, doubting my intuition, which was telling me something was very, very wrong. My love interest at the time thought I was melodramatic. When I finally made my way back to the doctor, I was correctly diagnosed with the largest pulmonary clot the radiologist had seen in someone who survived.
In 1891, Hugh refused to take his daughter Nellie to the doctor, thinking she was melodramatic. It was her older sister, Mary, who hitched up the team of horses and took her by wagon into Winona, a journey of maybe 5 hours, against their father’s wishes. Mary, the eldest of nine, was only 26 herself at that time, but already knew fear and grief. By that time, she had lost two siblings. Lucy died in 1881 at age four of croup or pneumonia. Her sister Annie died two years later at age 15 from typhoid in contaminated food. Maybe it was the fear of losing another sibling that gave her the courage to disobey her father and bring Nellie to the doctor.
Probably, it was also love.
Where, I wonder, was Margaret, Nellie’s mother, in this story? She has been somewhat lost to time, faded into the most distant of the funhouse mirrors. Margaret was born in County Kerry, Ireland in 1857, and emigrated to America at age 20. She married Hugh in Memphis, Tennessee, and they moved together to St. Charles. At that time, the act of marriage dissolved a woman into her husband. To the world, she was simply Mrs. Hugh Foley. But Margaret didn’t dissolve. It was she who would have kept their farmhouse clean and their children fed and healthy. It was she who would have suffered most when Lucy and Annie died, just two years apart; a foretelling of my own mom’s later loss. Surely Margaret’s heart went soft when Nellie complained of pain in her chest. I imagine Margaret conspiring with Mary behind Hugh’s back to get Nellie to the doctor. Maybe it was all her idea, to have Mary disappear with Nellie in the wagon over the hills to Winona before Hugh could object. And after they departed, Margaret would have stayed home, worrying over her daughter, fearing for her daughter, wondering how long she’d have to wait for news.
Nellie was not being melodramatic when she complained of the pain in her chest. She had an abscess in her lung. Mary probably brought her to St. John’s Hospital in Winona, a big red brick building run by the Catholic Sisters of St. Joseph. An 1891 ad for the hospital boasted that “This institution is one of the best of its kind for health and comfort, […] well furnished with bathrooms, etc.” There, a doctor performed a high-risk lung surgery to remove the abscess that likely saved her life. The surgery would have been with an early form of anesthesia, probably chloroform. The doctor operated through an incision on her back, which created a scar that remained for the rest of her life.
I imagine Nellie terrified and in terrible pain, with only her older sister there to comfort her. Could Mary even stay with her, with the horses needed back home? How long did Nellie stay there? How long did it take for her to recover? Although she had no choice but to trust the doctors who knew best, I suspect that that is when Nellie grew to know fear.
I think that fear probably stuck with Nellie. In her fifties, Nellie’s mind was not right. Nellie had married William Lauritzen, a butter-maker, and had five children including my Grandma RuthMary, the oldest. William built a white stucco house in Pine River, Minnesota, where much later, as a kid, I would visit my grandparents each summer. It was a one and a half story house with red trim, a shaded concrete front stoop, a tuck-behind garage with a red door, and plum trees lining the yard. The house was on the river, just across from the creamery that William owned. William’s creamery and his farming ventures were a gentle cushion for the family during the Depression. RuthMary remembered that Nellie and William would argue over money. I wonder what voice Nellie had in their finances — at that time, a married woman was hardly more her own person than in the late 1800s. William was frugal with the family; the rule was one dress and one pair of shoes for each child per year. But he was generous in the community, giving milk to families in need and lodging to migrants from the Dust Bowl.
My Grandma RuthMary was a teenager around 1930 when she and her father removed the knives from the house and began taking turns staying up at night to keep Nellie from trying to harm herself. I try to imagine my grandma, small and quiet and good-natured, sitting up through the night in that white stucco house, trying to knit or cross-stitch while soothing her agitated mother to go back to sleep. It went on like this for some time before it got to be too much. The only other option was to turn Nellie over to the state, and that is what they did in 1932. Nellie’s ever present eldest sister Mary visited Nellie in the hospital and helped RuthMary take care of her four younger siblings in the absence of their mother. Perhaps she understood Nellie better than anyone.
On Nellie’s intake records for Fergus Falls State Hospital, where she was initially committed, her diagnoses including hypochondria and involutional melancholia, or depression of the elderly. Specific diagnoses have come a long way since then, but I think their purpose is often the same. We want to pick a label, so that we can check the box of understanding and move on. Did anyone ask Nellie about where her fear of illness or her depression came from? Did anyone ask Nellie about her scar? Did Nellie ever talk about any of it?
I never found a way to talk about my blood clots that really connected me to anyone, except my mom, who was there with me. Initially, I told people about the blood clots like they were a wacky mishap-ridden vacation. That tone got a reaction. A roto-rooter in my veins! A wire threading through my lung! Forty days in the hospital! Even though many came to visit me, a gulf opened between me and the rest of my world. At 21, no one around me had the capacity to comprehend fear or death, or even the capacity to really care about anyone else; I certainly didn’t. The early 20’s are a time of self-doubt and self-discovery, an egocentric age. The value of my experience was that it made a good story. So, to avoid dull stares and awkward pauses, it became a zany adventure. I left out the moments that still made my heart race. Like the terror of being wheeled alone into an operating room knowing someone was going to cut open my jugular to insert a filter into my vena cava to prevent any more clot from moving into my heart or lungs. Or the terror of knowing later that this filter itself, meant to be removed but never done, was a risk for future clots. After a while, the carnival-style storytelling got exhausting, and it began to caricature these experiences in my memory. So, I stopped talking about it at all.
Grandma RuthMary stopped talking about her experiences and her fear, too. After three years, her mother died in the Anoka Insane Asylum. Eleven days after Nellie died, RuthMary’s dad, Hugh, died too. It happened while he was walking his corn field across the street from the white stucco house. It was endocarditis — an infection of the heart. They said he died of a broken heart.
At 21, RuthMary was now responsible for her younger siblings. William’s frugality and savings helped take care of the family. After a few years, RuthMary married my Grandpa Ernie, whose mother had also been institutionalized for a period, and they began their own family. Maybe it was their shared experiences with mentally illness that bonded them together for life. But Grandma didn’t look back, and never told this story to her children. It was only after she died that my mom heard this story from Grandpa Ernie and RuthMary’s younger sisters. What she did share with my mom was her silent resolve: My mom learned to suffer in silence, too.
After I finally recovered from my blood clots, I adamantly denied that they — or the newfound knowledge of my antithrombin III deficiency — had any effect on me at all. My life would go on as it had before. These blood clots would not fell me, I swore. I resisted with all the power of fear and silence and resolve that I could muster, for years. But the irony — it felled me for three lost months and more — is no longer lost on me. My life had changed in countless ways; the clots and the condition were now present in every decision I made. Chronic hypervigilance started as a seed in my subconscious and grew through the cracks until it forced itself into my consciousness — panic attacks, ghost chest pains, migraines, mysterious rashes, injury after injury, unidentified illnesses. Was this the kind of hypochondria that plagued Nellie?
Migraines, also hereditary, came through my matrilineal ancestors too, and epigenetically, this is probably not a coincidence, but a gene flipped on through exposure to trauma or chronic stress. For my mom, they faded after she grew into adulthood. For Grandma RuthMary, they came with a visual aura and were persistent throughout her life. She never complained or even so much as discussed her headaches. I minimized them also, until they were officially diagnosed, which offered a certain validity. They are excruciating. I have come to think of my migraines as an alarm from deep in the subconscious, forcing me to come eye to eye with my embodied fear. Migraines are what forced me to look into my past, to search for the root of this suffering.
I had wanted to follow the thread of my antithrombin III deficiency back in time through my ancestors, but the thread has frayed. There are no family stories of valiant battles with blood clots or pulmonary embolisms that mirror my own. I know that the disorder probably did come through Nellie, because there are other descendants who have clotting issues. RuthMary had at least one blood clot, but blood clots were not what carried the weight of her sorrow or fear, like they do for me.
Instead, I found that fear itself is what ties us together. Fear and silence and resolve are the threads that seem to weave in and out of all the stories. My matrilineal ancestors all stopped telling their stories. The world censored their female voices, and they self-censored their pain. Their fear was demoted to “worry.” In the place of their stories, they put silent determination and mental toughness.
My ancestors passed their genes as well as what they learned from the world to me. Their fear, their silence, and their resolve. Their coping mechanisms, healthy and not. I don’t know much of Margaret or Nellie’s personalities, and I didn’t know my Grandma RuthMary very well either. In my memories, she was quiet, soothing, and gentle. Loving, yet distant. My mom inherited some of this. She’s easy-going, full of humility, and will give up anything for those she loves. She is selfless and self-sacrificing. When I was in the hospital, she stayed in a cot next to my bed for nearly all of the forty nights I was there. It was her love that helped me endure those forty nights.
And yet she refuses to let me know when she is sick until the risk has passed. She doesn’t want me to worry about her; but in doing that, she doesn’t let me love her the same way she loves me. As for me, I recently flew across the country to accompany my own sister through surgery, but I, too, find it hard to ask for help. I fear I’ll get the messages that I’ve gotten before: I don’t believe you. I don’t understand. I don’t care.
For some of my mind-body ailments, I have gotten diagnoses stamped on my medical chart. Generalized anxiety disorder. Chronic common migraine (migraine with no aura). They may have helped check the box of understanding and validation, but a diagnosis does not heal. It does not stop the symptoms; it does not eliminate the root cause. The treatments offered for migraines didn’t help, and often had even worse side effects, weight gain, nightmares, dry eyes, brain fog. No, the diagnoses just seemed to confirm one of my worst fears: that something is wrong with me, that my body is just not up for the job. If I can’t trust my own body, what can I trust? Who will be there for me when illness strikes again, when my body fails again? Because now I know, viscerally, how mortal I am. Fear has kinked into a knot in my chest behind my heart. And no matter how much I pretend the thread is smooth, my breath keeps catching on that knot.
Did silence work for my ancestors better than it has for me, I wonder? Did they ever loosen the knots? I can’t believe that Nellie found peace in the Anoka Asylum, where she starved herself, her heart failing, until she passed away. I wonder if her mind failed because she could not deal with the fear of her body failing her? Or if her heart failed because her mind was already gone? Or did it all fail at once, because unlike when she was 12, the doctors did not know best, and they could not save her?
Did Grandma RuthMary, in her determined silence and devoted motherhood, ever come to understand what had happened to her mother, what had happened to her? Did she ever get to be the child that she never got to be?
And my mom. She has felt the tear in the fabric where the stories should be, and she has started to mend them. She shared these stories with an open heart, even though now at 79 years old, she gets lost diving into the past. Last summer, I sat down with her and a cell phone recorder at her kitchen counter, and she told me the stories of her own fear and loss and grief. The story of how she will always have six children, even though only four made it past the first week of life, even though the rest of the world only sees four. In lovingly telling her stories, she has started untying the knots.
I am full of gratitude for the life-saving efforts of the doctors who treated me, my mom, and 12-year-old Nellie. But I have realized that I will not find all the healing I need in a hospital or a clinic. I am finding it in these stories, and in sharing my story, even though it goes against everything I’ve learned. In these stories, I have realized I’m not as alone as I thought.
I’m learning that knots can be untied, carefully, lovingly. Patiently picked apart under a bright light until the loops fall flat and loose. And in untying the knots I am noticing another thread, the warp that holds the fabric together. Love: the love of a mother, the love of a sister, the love of a daughter, weaving back and forth through each generation. As the threads loosen, I have started focusing less on the knots and more on the fabric, the beautiful texture the threads together — love included — have created. Through hearing and telling these stories, I am wearing the threads of fear and silence thinner and lighter and a little bit softer, and letting the warp shine through.
This essay received 3rd place in the Hal Prize for Nonfiction and was published in the 1842 Review in December, 2022.
Thanks for reading. Have any of you walked through your family history to connect the dots between your ailments? I’d love to hear of your experiences.
More on those fun learned coping mechanisms in a future post!
Love this essay—it’s actually what convinced me to subscribe to you! (You had it linked in your writing/bio/website/something.) Learning the concept of “inherited trauma” has been ground-breaking for me in my quest to understand my burdens and struggles, as well as my strengths. Thank you for sharing your experience with this!
What a delight to discover your Substack (thanks to Courtney). I look forward to reading more soon. We have both spent time going through medical records from the Fergus Falls State Hospital for our respective projects and share an intergenerational approach to our narratives.