I’ve always been daddy’s girl. My mother, a teacher, had the most incredible mind of anyone I’ve ever met, but she was a complex person. My dad, however, was the center of my world.
It was always just the three of us. I was the child they always wanted and fought to have by adopting me as an infant after a long fertility battle, including seven miscarriages. That made us, for better or for worse, a pretty tight unit.
My father taught me how to throw a softball and we listened to bluegrass music together. He was state auditor in the 70s, so I sometimes went with him to North Carolina while he worked, expressing pride in his ability to make friends (and find time for a drink with those friends) wherever he went.
He was my superhero until he quickly stopped being that guy.
Courtesy of Bellamy Young
I was 13 when I was first diagnosed with cirrhosis, a complication caused by long-term liver damage. We blamed him for drinking and, as a family, did everything we could to close the door so no one would see this private shame. I felt ashamed, as if my father had failed in some way and this diagnosis was his punishment.
As I carried what at the time felt like my family’s humiliation, a disappointment rose within me for this man I once considered my hero. He became combative and I, still a teenager, was my worst self in return. I would smell his breath and conclude he was drinking during the day, roll my eyes when he forgot to pick me up from school, and be frustrated by his flailing arms, causing everything from alcoholism.
I judged him and it remains one of the few major regrets of my life.
The realization that these behaviors were actually symptoms of something bigger came fast and furious. For 20 years, my father traveled to the same building for work without any problems until one night he couldn’t find his way home. We were afraid that something else was wrong with him: we could never imagine that what we were seeing was the result of progressive liver disease. So we went back to the doctor just to sort out an apparent diagnosis of hepatic encephalopathy (HE).
It still hurts me to say this now, even after years of working to support carers and those living with the disease. So if anyone needs to hear, overt just means not hidden, hepatic means related to the liver, and encephalopathy means something that affects your brain.
Armed with little information, it never occurred to us that a disease that started in my dad’s liver could cause changes in his personality, self-perception, or daily life.
Treatment, if you could call it that, because HE at the time was like the wild west (although that has changed now, and there are treatment options that I encourage anyone diagnosed with OHE to discuss with their doctor). Trips to hospitals and doctors yielded no answers, and soon, my dad was spending most of his days in a hospital bed in our music room. With that came a sense of losing my dad, even though he was still there.
All the while, the teenage years I imagined for myself were slipping away. You can’t have friends when someone is dying in your house. Dumb dance competitions and scholarships mean very little when the hours after school are spent taking care of your dad’s basic needs. And in moments when you manage to weave some joy into such existential sadness, it feels inappropriate to bring it home. There is no room for that.
Courtesy of Bellamy Young
Just two short years after his initial diagnosis of cirrhosis, my father died of another disease. Somehow, it felt like it happened all at once. in other ways, I grieved him from the moment he ceased to be himself.
In any case, suddenly he wasn’t there. The hospital bed in the living room, all the pills, the hospice workers and the IV lines. All of that was suddenly lost.
They say the fastest way to deal with something is to go through it, but I pushed through my pain, pushing it to the side while taking on my dad duties at home. I learned to write checks and pay our bills until I finally left for Yale.
Over time, the shame I felt about my dad’s death turned into guilt. My father’s diagnosis of cirrhosis and later his apparent hepatic encephalopathy initially seemed to me like a failure of will. He was an alcoholic, that I can recognize. But I regret the time I spent blaming him for a condition that can appear for so many different reasons, and I feel guilty that I didn’t support him better, regardless of the how or why of the illness.
This guilt lives inside me like an itch that I can’t scratch.
So when the opportunity arose to raise awareness of HIM and those caring for a person with HIM, I was grateful to have a way to atone for my behavior while my dad was sick, but also to make sure no one ever felt alone or uninformed as they walked the NO path. Through a partnership with Salix Pharmaceuticals and myself Instagram Caregiver Conversations seriesI have connected with HE patients and carers to break down stigmas, share our stories and offer support.
It’s always painful to talk. There will always be knots in my stomach and sweat as I talk about it, but the pain has subsided over the years and if I can help one person not feel the way I did, then all the pain is worth it.
