A toss of the genetic coin

My brother is dead. His body was found in his residence on May 12 and cremated shortly thereafter. But we just found out. That’s because my brother had a mental illness and lived on the margin of society. He was 59 years-old.

I heard the news from a sister, who heard it from our other brother, who heard it from our mother, who heard it from a stranger on the phone who had called to say they were sending a death certificate. My brother had been dead for a while before his body was found - it was mummified. There was no information about family among his possessions so it had taken time to track us down. But I guess that’s how it is when you die poor and alone. There’s no hurry to inform anyone because there’s no one to inform.

My brother was diagnosed with schizophrenia in the 1970s. This was the same time that states began discharging people who posed no threat to themselves or others from state hospitals. This was not a bad thing – there was talk of sheltered employment and new housing alternatives for former hospital residents. But sufficient services never materialized, and many of these people ended up on the streets.

One Christmas shortly after he had completed college my brother came home to visit. But he was not himself.  He had a major breakdown. Following hospitalization and many months in therapeutic and supportive work programs, and medication, his condition was stable. It was now time to get a job. But what kind of work, and where? Or more precisely, who was going to hire a bright young man who walked and talked like a zombie? He had completed the available programs but there was nowhere for him to go. Yet he still had hope for himself. He thought his chances would be better elsewhere so he returned to where he had been. We never saw him again.

Why, you may wonder, did my family not encourage him to stay and assume responsibility for him? The answer to that is long and complicated but familiar to any family that has lived with an adult with mental illness. Let's just say the structure of U.S. health insurance, social service and public assistance programs do not make it easy, and many families lack the financial resources and emotional stamina to make such a commitment – providing for all material and medical needs, coping with erratic behavior, running interference with the law, assuaging other peoples’ fears, monitoring medication, and more. It can be a full-time job depending on the type and severity of the illness. Ultimately, their life becomes your life, and no one in my family was willing to give up their life for his. We cut him loose. Why no one stayed in touch with my brother is another matter, but can probably be best summed up as benign neglect.

But one person’s well-being should not require the preemption of someone else’s. We live in very punitive and selfish times: If you don’t succeed in life it’s your own fault, and don’t expect government to bail you out! I understand when unemployment is high, budgets are strained, and families are stressed, people hang on tighter than ever to what they have for fear of losing it. They are afraid and don’t know how to protect themselves. So they become defensive.

But you would think uncertainty and worry would make them more, rather than less, willing to support reasonable taxes, health care for all, and public programs that help us support each other. After all, in times of misfortune, these same programs will protect and preserve their families, too. Yet, there is not only widespread unwillingness to help other people, but denigration and outright contempt for those down on their luck. It’s a way of thinking and an ungenerous spirit I don’t understand, and one that will haunt them when trouble lands on their doorstep, as it inevitably will.

A childhood friend of mine wrote upon learning of my brother’s death: “I remember hanging out in his room, without you, looking at his fossil collection with him…There was something really peaceful about him that made me comfortable. It's too bad the toss of the genetic coin robs us of our essential nature.”

It’s important to remember: There, but for chance, go I.

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