It was a gray early spring day just west of Cleveland, where my husband and I had driven from New York City to say goodbye to his dying aunt. My sister-in-law and our niece and nephew joined us at the hospice facility where Aunt Linda was already being administered palliative care. Aunt Linda was mostly sleeping, mostly unaware that we were there. At one point my 14-year-old niece ran out of the room crying.
I followed her into the bathroom and hugged her. I had known Aunt Linda for nearly 10 years. She had always been vibrant, beautiful and funny. But cancer was stealing her from us. I understood cognitively that it was sad. But, as was typical for me, I didn’t feel sad. Rather, I felt matter-of-fact.
“Why do you think you’re crying?” I asked my niece when her sobs subsided.
“It’s because she’s dying!” she answered, as if nothing in the world could be more obvious.
“Oh, yes,” I said. “Right.” Of course. She was crying because Aunt Linda was dying. Death is sad, and sadness makes people cry.
It seems that everyone knows that, except me.
Before we get ahead of ourselves, I want to be clear: I have emotions. Rage? Check. Fear and anxiety? Check, check. I can feel joy, excitement and satisfaction. I feel love. I have empathy for both myself and those around me. But sadness as a whole doesn’t exist in my emotional repertoire. Even weirder, I don’t think it ever has.
When I was a teenager and my father grew progressively sicker from an as yet unnamed, years long illness, I recall feeling anxious and embarrassed, but never really sad.
He died when I was 21. I felt something like euphoria in the weeks following his death. “You’re just relieved your dad’s suffering is over,” someone suggested. “Yes,” I agreed, trying to appear somber. “I’m relieved his suffering is over.”
Years later, when I wrote about my reaction to his death in my book “The Family Gene,” I blamed late-adolescent self-involvement. I suggested that just as birth isn’t just “happy,” death needn’t just be “sad.” But the truth was bigger than that.
In my 20s I learned that my sister and I both carried the gene linked to our father’s illness, along with only 14 other people ever — all members of my family. In the subsequent years I became a spokeswoman for my family, handling what I understand to be very difficult topics with an emotionlessness that belies what is either great emotional intelligence or a low-level psychopathy.
I live with a disease that have doctors calling me a ticking time bomb and, even with this understanding, I mostly like my life. “It’s like the best mental health disorder you could possibly have!” my friend Joanne pointed out. She wasn’t wrong.
Never feeling sad, however, isn’t always a good thing. I often substitute anger and rage where sadness might serve me better.
After my mother’s 2018 death from cancer, I became so explosively angry at the funeral director over the obituary he posted that I left him expletive-filled voice mail messages until I was hoarse. To soothe me, my husband rubbed my back and said, “It’s OK, Jos. You’re doing really well.” “No I’m not,” I spat back, “I’m doing horribly.” He paused then said, “It’s true. You’re doing horribly. You really are. Just horribly.”
My mother’s death made me wonder for the first time if something might be wrong with me. I began googling phrases like “Is it possible to confuse emotions?” and “Are there people who never feel sadness?”
That’s when I happened upon the term alexithymia — or emotional blindness. Alexithymia, some researchers say, is similar to colorblindness in that a person is unable to register or recognize some or all emotions. Alexithymia is often linked to people with more extreme neurological differences, like some on the autism spectrum or in the psychopathic range.
However, more recent studies have found that some people who experience empathy and are able to experience “normal” interpersonal relationships can occasionally also present with an emotional shallowness, or even an emotional lack. Dr. Richard Lane of the University of Arizona department of psychiatry has been one of the leading researchers of emotional confusion and alexithymia for more than 20 years. Dr. Lane thinks of emotions like a crayon box. “Everyone has a different number of crayons in that box,” he suggests, “and they vary in color.” In cases of alexithymia, he says it isn’t that the person doesn’t feel emotions, but that the brain has trouble interpreting them.
I took the Toronto Alexithymia Scale test for Dr. Lane to analyze. “Most of your answers are non-alexithymia,” he told me. But then he pointed out that three of the questions had been targeting sadness. In all three scenarios he saw that I mentioned anger, but not sadness. “It helped confirm that not only don’t you feel it, but you probably don’t have a strong mental representation of it.” He paused then added. “You have this interesting isolated lack of sadness.”
My friend Lee Shapiro, a practicing psychologist in New York City, had a different theory: Psychological epigenetics.
Epigenetics deal with anything that can be inherited biochemically, but is not part of the genetic code. In other words, epigenetics are the visible representation of how environmental factors impact our genes. Was it possible that my family gene had killed my dad, but had also given me a way to cope with it?
A 2014 study by Jean Lud Cadet, a molecular neuropsychiatrist, claimed that early stressful life events have the potential to alter our genome in such a way that we might “pass” those experiences in some form to our children. My friend Lee wondered if there was some way our family gene was not only impacting our family’s health — but also our emotions. “Psychodynamically it could be interpreted as a defense. But for you,” he pointed out, “this is probably a pretty good symptom to have.”
My grandmother was 11 when her mother was taken from her home for the first of many times, to convalesce at a hospital many miles away. Later she lost a brother, followed by a sister to the same gene. At my uncle’s funeral, the second of my grandmother’s three children to die of the gene she’d passed, her eyes were dry. “How do you feel?” I asked, holding her 80-year-old hand in mine. “I feel like nothing,” she said icily. I could tell she meant it, and I completely understood.
While alexithymia is often referred to as “emotional colorblindness,” no genetic markers have been identified. How we process emotions is largely considered environmental. My lack of sadness might be linked to my grandmother’s modeled stoicism. My sometimes-explosive temper might be related to cultural factors. Perhaps I bought into the American model that sadness is weakness when I was very young and never looked back.
We humans are resilient. We find ways to live with the most horrible truths. I wonder if my lack of sadness has actually been an advantage that has helped me find the necessary focus and strength to help motivate our doctors and researchers to come up with the potential cure we now have, for the illness that has already killed so many of my family members. Maybe we all have it in us to manifest some kind of stoic strength that can help us to fight back.
Joselin Linder is the author of “The Family Gene: A Mission to Turn My Deadly Inheritance into a Hopeful Future.”
