Op-Ed: My mentally ill brother died in the early months of the pandemic. But we lost him long ago
The author wondered with some discomfort whether she would have had a deeper source of today's emotions for her brother if she had been his doctor. (Getty; Ross May / Los Angeles Times)
My brother died in April in the first months of the pandemic, but then we didn't lose him. He disappeared from our lives almost 40 years ago when he was diagnosed with schizophrenia. To say he suffered from schizophrenia is an understatement. Schizophrenia murdered him, personally done to him what COVID did to our planet. After he got sick, nothing was like before.
My brother had a good couple of years. He was a quiet kid with a thing for math who would spend hours assembling model airplane kits. But shortly before his 15th birthday, the disease began to break down the building blocks of who he was. Within a few weeks, he became paranoid, endlessly tearful, and completely inappropriate. And then he mostly disappeared from my life and was hospitalized for treatment that was often worse than the actual illness.
There is no good script when someone in your family becomes seriously mentally ill. At the heart of many casual conversations are normal milestones - degrees, achievements, weddings - and he didn't have any to share. The milestones I remember were the ones I wanted to forget - the time he tried to kill himself by wading into a river, the time he was caught by the police on the railing of a bridge. He talked obsessively about natural disasters, serial killers, and death. It was minimally relational. When my father visited him in the hospital, he often told him to go. Some of my friends didn't even know I had a brother. He never met my children.
He suddenly stopped walking about a year ago. Until then he was at home in a group. They sent him to the hospital. The doctor who approved him called to discuss his complex history. She was kind and warm, and patiently tried to piece together the complex pieces of the story of his life. She ordered a series of tests, but the cause of his weak legs would remain a mystery.
In the months that followed, she faithfully called with updates. Sometimes it felt more like we were two colleagues discussing a case than the reality - the patient we were talking about was a brother I barely knew. But it was clear that she had a real connection with him. She giggled kindly at his tendency to repeat the same bizarre questions verbatim, a pattern that had alienated the rest of us. In the ruins of my brother's life, she found a person who did not remind her of someone she used to know, and so she was curious about that person in his present life, just as I did not know.
But now that he was on a wheelchair, he couldn't return to his group home. He was stuck in the limbo of nursing with no alternative destination. When the pandemic broke out, he was confined to his small hospital room. He was excited and depressed. He threw his trays. His world became even smaller.
One morning the doctor called and said he had a fever. I was concerned that he had COVID-19. We talked about what to do next. The following night she called and said things had gotten significantly worse. I knew before she said it: my brother was dying.
I called my parents. A grim, resigned sadness came over us. My brother's worsening condition released us from COVID-related visitor restrictions, and I debated making the three-hour night drive to see him. But before I could decide, he silently succumbed to an overwhelming infection and died.
Like so many who lost a family member during this terrible time, we did not meet. We have thought privately and alone about his suffering and shared our complicated memories and sadness in parts. It has never been tested for COVID; The cause of death is another unanswered question about his life. His death itself is still an abstraction, just like his sudden disappearance when I was a child.
His doctor sent me a heartfelt message a few days after he died. She said she would miss his childlike face and sense of humor, things that I had never really seen. With some discomfort, I wondered if I would have had a deeper source of today's emotions for my brother if I had been his doctor.
What does this deafness say about me, a doctor recognized for the depth of my compassion? I think they say severe mental illness is brutally difficult to observe and understand. It burns everyone down and grounds both sufferers and loved ones in the past, leaving us unable to reconcile the person we have lost with the person we still have. In some ways, if you've never known this person before, it's easier because you're not endlessly rowing at a picture of someone who no longer really exists.
My brother died 40 years ago and he died in April. He was an old man and he was a child. He was terrifying and scared; He was macabre and funny. All of these things can be true at the same time; Neither version of a life is so complete that it supplants the other. The only harsh truth is that he will always rest in pieces. But I am grateful that another doctor noticed something about him, even in the face of a malignant disease with no silver lining that can no longer disfigure him.
Jillian Horton is a Canadian internist and author of the upcoming memoir, We Are All Perfectly Fine. @ jillianhortonMD
This story originally appeared in the Los Angeles Times.
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