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But whenever I talked about it, I only confused her Nothing rong with her She was just the sa her chores She wasn’t uncoordinated She didn’t knohat I was talking about Even as her words choked her on their way out, she didn’t knohat I meant Even as she listed like a drunk fro out of the ordinary And worse, she believed it She genuinely thought I was saying these things to hurt her, and she didn’t understand why I would The sense that I was betraying her through my fear, that I was the cause of her distress rather than only a witness to so on the couch She wasn’t interested in going to the clinic; the lines there were always so long and there was no reason

I got her to go the day before Ash Wednesday We arrived early, and I had packed a lunch of roast chicken and barley bread We made it to the intake nurse even before we ate, and then sat in the waiting area with its fake bareen carpet A man just older than my mother sat across froled not to cough The woht ahead, her hand on her belly like she was trying to hold in her guts A child wailed behind us I re why anyone who could afford to have a child would bring it to a basic clinic My ers woven with ht

The doctor was a thin-faced wos 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 so her e’d come in The expert system had already pulled the records, told her what to expect Type C Huntington’s The sah randfather 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 ed her in a rote and practiced tone to be brave, and left Off to the next exaht be able to save Myme only slowly

“What happened?” she asked, and I didn’t knohat 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 ht parties, the flirtation with the other young men in my circle: all of it ended I dividedmother, one a fierce student on a quest to understand the disease that was defining his life, and the last a victi food a challenge My own roolassthat opened on an airshaft My mother slept in a chair in front of the entertainrants froht, each footfall a reave her raoverns in the apartrew iuage, 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 andthere was on type C Huntington’s, thedone with it, the treate it When I didn’t understand so, 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 theulation delay? How did mRNA inhibitor proteins address phenotypic expressions of primary DNA sequences? What did the Lynch-Noyon synthesis rown 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 e was so close Before I educated reat depth of science, that every question of ied, studied, that all the ansere there, if only soht way And for sos, 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 fro exposure or trauma

There were explanations, of course, for this dearth of inforuidelines ive healthy babies a series of ood experin I understood that, but to coht and step so quickly into darkness was sobering I began to keep a book of ignorance: questions that existing inforhts about hoers ht be found

Officially, h to understand what each of her drugs did, to read her fate from the pills that arrived I knew by their shapes and colors and the cryptic letters pressed into their sides when the vast bureaucracy that administered basic health care had moved her from palliative care to full hospice In the end, she was on little ave theht she died, I sat at her feet,on the red wool blanket that covered her wasted lap Heartbreak and relief were uards She moved beyond pain or distress, and I told myself t

he worst was over

The notification froe in status, the rooer appropriate I would be reassigned to a shared dorotá, depending on availability I thought—mistakenly, as it turned out—that I wasn’t ready to leave Londrina I ently, h the eht be less that I needed to stay in the city of my birth, the city of my mother, and more that I needed some control over the terms of my departure

I applied to apprentice programs at London, Gdansk, and Luna and was rejected by all of theainst people who had years of for, political connections, and wealth I lowered ra on basic, and six months later, I arrived in Tel Aviv and met Aaron, a former Talmudic scholar who had researched his way to atheism and was now my dorm mate

The third night, we sat together on our little balcony looking out over the city It was sunset, and ere both a little high on marijuana and wine He asked me what my ambitions were

“I want to understand,” I told him