I is for Illness

I went to lunch today with Beloved Family Member, the first time since he got out of the hospital with his new mitral valve and pacemaker.

“You know, your mother saw the white light,” he told me. “Did she ever tell you about that?”

I nodded. “More than once.” When I was about ten, she was in emergency surgery for a perforated colon. It’s a very standard Near Death Experience story, with the white light at the end of a tunnel, dead family members waiting within sight, and so on. Then she heard a voice, which she identified as God, ordering her to return for my sake.

On the one hand, I have heard the tale so many times in the context of a guilt trip that it has lost most of its positive sense. On the other hand, I love her dearly, and had she died, I would have been left in the care of a physically abusive father without the only person who could reason with him.

“A woman in another room, too, her father saw the white light,” said Beloved Family Member, referring to his time in the hospital. “So it’s not just those people trying to sell books and all, it’s a real thing that people experience. But I didn’t see it. All I had was darkness and anger.”

“It’s common, but it’s not universal,” I reminded him. I elected not to point out that many scientists, most notably Susan Blackmore, theorize that the white light is probably the result of a lack of oxygen to the brain, and may not be an experience of what comes after death so much as the experience of a brain in the process of dying. It can come across as Sour Grapes if you try to comfort someone with “well, what you didn’t experience might not exist anyway”. Especially coming from someone whose mother came back.

“I was hallucinating like hell the whole time, too,” he said, laughing. The joke is, of course, that BFM has schizophrenia.

Postsurgical psychosis happens all the time with people who aren’t otherwise psychotic,” I pointed out. “The staff are probably long used to it.”

“That’s true,” he said. “But, I mean, I’m still schizophrenic. I wonder if that’s why I didn’t see the light.”

“You mean, you’re already skeptical enough of your experience—”

“—yeah, exactly. If I had it, I’d just think it was more of the same.”

I had been talking with my husband a few days earlier about this topic, and especially about how the experience of mental illness affects faith. So I had a thought ready for BFM, after all.

“Most people take for granted that their experience of the world is accurate,” I said. “They can trust that their senses are reporting everything around them as it really is.”

“Oh, I definitely can’t,” said BFM. “I’ve heard voices and had delusions and—yeah, no, I definitely have to question everything.”

“But in a way, that’s a good thing. The belief that we experience all things with perfect accuracy is a fallacy. We don’t experience reality directly—all the ways we experience reality are subjective and limited. You understand that inherently, while many other people don’t and never will. You could say that you’ve gained a bit of wisdom in exchange for peace of mind.”

“Not all of it,” he laughed. “I still have a little peace of mind. But thanks.”

Obviously, this is taking a rose-colored perspective on the experience of mental illness—schizophrenia is far more than trading off “peace of mind”. Still, it is important to recognize that the experience of people with mental illnesses is different from those without them, at times fundamentally so, and this difference is both important and potentially a priceless source of insight.

We need skepticism, and we need faith. The scientific method is an effective process for analyzing our experiences, but ultimately we must leave the testing of reality to others. We have trust that scientists act honestly, and place our faith in the legitimacy of their work, but we cannot do so blindly—it took only one study in 1998 with falsified data to forge a false connection between childhood vaccinations and autism, creating what at least one article has called “the most damaging medical hoax of the last 100 years”.

The faith placed in the work of scientists, filtered through non-scholarly sources with equal faith placed in them, was so great that a full retraction and stripping the man responsible of his medical license has had little impact. Source amnesia means that, unfortunately, hearing a fact once reported by a trusted source is usually enough to fix it in place. The context won’t be remembered well enough to recognize the name of the doctor again when his license is revoked. What people will remember is the original conclusion reported, and never connect the two. “I heard it on the news once, it must be true” is as solid as any urban legend in the absence of vigilant questioning and doubt.

Yet, at the same time, the worst fall-out of mental illness can be lack of trust in yourself, your experiences, the world around you. Solipsism may not be possible to disprove, but it is ultimately useless and harmful to doubt absolutely everything. We must trust our experiences are legitimate in order to value them. We must have faith that those we interact with are real, and trustworthy, in order to have any connection with others, to exchange information and learn from each other.

Walking this fine line between too much doubt and too much faith is a skill we must develop. We need discernment not merely for the spiritual, but for all things in our lives.

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