The Vital Abyss

The doctor was a thin-faced woman with earrings made of shell. I remember that her first name was the same as my mother’s, that she smelled of rose water, and that her eyes had the shallow deadness of someone in shock. She didn’t wait for me to finish telling her why we’d come in. The expert system had already pulled the records, told her what to expect. Type C Huntington’s. The same, she told me (though my mother never had), that had killed my grandfather. Basic would cover palliative care, including psychoactives. She’d make the notation in the profile. The prescriptions would be delivered starting next week and would continue as long as they were needed. The doctor took my mother’s hands, urged her in a rote and practiced tone to be brave, and left. Off to the next exam room, hopefully to someone whose life she might be able to save. My mother wobbled at me, her eyes finding me only slowly.

“What happened?” she asked, and I didn’t know what to tell her.

It took my mother three more years to die. I have heard it said that how you spend your day is how you spend your life, and my days changed then. The football games, the late night parties, the flirtation with the other young men in my circle: all of it ended. I divided myself into three different young men: one a nurse to his failing mother, one a fierce student on a quest to understand the disease that was defining his life, and the last a victim of depression so profound it made bathing or eating food a challenge. My own room was a cell just wide enough for my cot, with a frosted glass window that opened on an airshaft. My mother slept in a chair in front of the entertainment screen. Above us, a family of immigrants from the Balkan Shared Interest Zone clomped and shouted and fought, each footfall a reminder of the overwhelming density of humanity around us. I gave her ramen soup and a collection of government pills that were the most brightly colored things in the apartment. She grew impulsive, irritable, and slowly lost her ability to use language, though I think she understood me almost to the end.

I didn’t see it at the time, but my options were to weave myself a lifeline from what I had at hand, abandon my mother in her final decline, or else die. I would not leave her, and I did not die. Instead I took her illness and made it my salvation. I read everything there was on type C Huntington’s, the mechanism as it was understood, the research that was being done with it, the treatments that might someday manage it. When I didn’t understand something, I found tutorials. I sent letters to the outreach programs of medical care centers and hospitals as far as Mars and Ganymede. I tracked down the biomakers I had known and drilled them with question—What was cytoplasmic regulation delay? How did mRNA inhibitor proteins address phenotypic expressions of primary DNA sequences? What did the Lynch-Noyon synthesis mean in respect to regrown neural tissues?—until it was clear they didn’t understand what I was saying. I dove into a world of complexity so deep even the research watsons couldn’t encompass it all.

What astounded me was that the cutting edge of human knowledge was so close. Before I educated myself, I assumed that there was a great depth of science, that every question of importance had been cataloged, studied, that all the answers were there, if only someone could query the datasets the right way. And for some things, that was true.

But for others—for things that I would have thought so important and simple that everyone would have known—the data simply wasn’t there. How does the body flush plaque precursors out of cerebrospinal fluid? There were two papers: one seventy years out of date that relied on assumptions about spinal circulation that had since been disproved, and one that drew all its data from seven Polynesian infants who had suffered brain injuries from anoxia or drug exposure or trauma.

There were explanations, of course, for this dearth of information: Human studies required human subjects, and ethical guidelines made rigorous studies next to impossible. One didn’t give healthy babies a series of monthly spinal taps just because it would have been a good experimental design. I understood that, but to come to science expecting the great source of intellectual light and step so quickly into darkness was sobering. I began to keep a book of ignorance: questions that existing information could not answer and my amateurish, half-educated thoughts about how answers might be found.