I felt every bit of the shirt to be sure there were no more notes. I looked at the envelope. The return address was a postal box and the zip code 87832. A quick check on my phone … Bingham, New Mexico.
All of this was just what it was: a distraction, whether welcome or not, from the terrifying situation at hand. The note was a strange affirmation of knowledge I did not have. It was easy to believe that someone was having me on. That was, in fact, more than likely, that I was the random target of some prank, perhaps one of a few or many targets. I knew absolutely nothing, but the notes were real, felt heavy in my hand, meaningful. This feeling, of course, fed my need to know something, anything at all, all the business with my child being nothing but questions. The nagging inquiry at the end of this red herring of a rainbow, though undeniably just another distraction, was epistemological. When rednecks get scared, they run to their guns. When intellectuals get scared, they run to fundamental philosophical problems: What is goodness? What is beauty? What is it to know a thing? About knowing, I was not so much interested in whether I could know some thing but in what kind of thing I could know. I knew that my cryptic notes were real, but I could not know what they meant, how they were meant, or whether they meant. I could not know whether my daughter would live into old age, but I could know what was making her ill, if only someone would tell me. Just as I could not know how a pile of bones could end up in pack rat middens in my cave, but I could know they were from a grebe.
That night Sarah cried out with a bad dream. Meg and I ran to her room the way we did when she had night terrors as a small child. She never awoke, as she never awoke then. Meg held her and rocked. I put my hand on Meg’s shoulder, as if Sarah could or would feel my hand through another body. As I touched Meg, I felt her soften, and I felt close to her like I had so long ago. In that moment Sarah was not her daughter and my daughter but our daughter, the way she had been our daughter when we first brought her home, when looking at her was akin to looking at a portrait of the three of us. Meg looked at me, and I could see the fear.
“I’m scared too,” I said.
While Meg took Sarah in to give blood for a DNA analysis, I went to campus. It was the day of the midterm exam, and though I wasn’t teaching, I still had to be there to proctor the test and deal with whatever panic question six might cause. The campus was buzzing with news that some students were occupying the president’s office. I read about it in the student rag while sitting in my office, regarded photos of the protesters sitting on the floor, staring at their phones and sipping from Starbucks cups. The students were apparently demanding many resignations because the president and his administration were insensitive to the needs of students of color. It sounded like my college days twenty-five years earlier, when we were asking for essentially the same things. I was sadly as apolitical then as I was at this moment. I dealt with fossils. I crawled through caves and measured the bones of birds long dead. The students had passed around a petition stating that the administration did not understand how profoundly they had been affected by the murder of a black teenager by police in Peoria, Illinois. The petition claimed that the students should not have to take exams, they were so distraught. A couple of black students came to my office, seeking me out as a black faculty member. I had never met either of them, a handsome man and a handsome woman, bright eyed and young, searching for intensity.
“Professor Wells?”
“Yes, I’m Wells.”
“I’m Mya Chambers, and this is Daniel Johnson. I’m an English major,” she said.
“History,” Daniel said.
“We were wondering if you would join us, talk to us at a meeting tonight,” Mya said.
“Who is ‘us’?”
“The Students of Color Coalition,” Daniel said. “We’re protesting the lack of black faculty on campus.”
“What do you want from me?”
“We want you to tell us how the university has systematically excluded people of color from becoming faculty.” Mya looked at Daniel for approval.
Daniel nodded.
“So, it appears you already know what you want me to say,” I said. This surprised them and, to tell the truth, me too. My tone suggested no patience at all. “You’d like me to say that this university has tried to keep black paleontologists from serving as professors here. Understand me—I know racism is real. I’ve been arrested a couple of times in Arizona for simply driving while black. I’ve been shot at by some white supremacists while on a dig and worried that the last words I might hear in life would be ‘I got me one.’ But I haven’t personally experienced it here, though I’m certain there’s some of it.”
They stared at me as if I were on fire.
“For all I know I may not have gotten several grants because of racist panelists. I just don’t know. I crawl into caves and find fossils and then identify them. I am a scientist. I should probably be more political in my thinking and dealings with the school. But I’m not.”
Daniel appeared about ready to say something.
“I read in the school paper that you don’t think you should have to take exams,” I said. “It was an awful, terrible thing that happened back there in Peoria. I went to graduate school in Chicago. Do you know what the high school students in Peoria will be doing at the end of the term?”
“What?” Mya asked.
“Taking exams,” I said. I had made them unhappy. They had no way of knowing that part of my rant was rooted in the fear and frustration generated by my daughter’s undiagnosed illness.
“Protest is good,” I said. I believe they thought I was about to make nice. “But if you want to do it, maybe you should march in the streets with people on the front line instead of doing the very American thing of ordering pizza and having a party on the floor of the president’s office before you use your expensive educations to live good lives.”
Daniel regained his footing. “So, you think there are enough black faculty on this campus?”
“There should be more,” I said. “I don’t disagree with you. But I don’t have time to attend your party so I can feel good about myself. I really am a nerd who crawls around in caves. Maybe that’s why I have a job here. I don’t know.” I paused to observe their reactions. I couldn’t read much in their faces. Perhaps there was not much to read. Regardless, I was fairly shocked that I had said so much, especially because I cared so little. “Have I disappointed you?” I said, more rhetorically than anything else.
They said nothing, but it was clear they were quite ready to leave.
“I didn’t mean to. I’ve had a long week.”
They didn’t know how to end our little encounter.
“You can go,” I said, sounding harsher, sterner than I intended. I was, by all reports, a gruff man, though I believed I was merely direct. Directness, the last excuse of the curmudgeon, the grouch.
They walked away.
Hilary stepped sideways through my doorway. “Wow, you sort of laid into them, didn’t you?”
“Did I?”
“You might get a reputation.”
I shrugged. “Never had one. Might be fun.”
“I doubt it.”
“What do you want?” I asked.
“What’s going on?” She studied me, half smiling, her head cocked to one side like a puzzled canine.
“Stuff at home,” I said. I realized how that sounded. “My daughter is sick.”
“I’m sorry to hear that.”
“Yeah, me too.”
“Come on, let me buy what passes for lunch around here.”
I looked up at her from my chair and for a second simply didn’t know who she was. I shook my head, but not as a response to her question, then said, “No, thank you.” I added “Hilary” to satisfy myself that I knew who she was.
Eremophila alpestris. A humerus, complete, 22.7 mm in length, was found from the 19–25 cm level. This species has been reported from other Pleistocene deposits. The size is comparable to the races breeding today in the a
rea.
Sarah and Meg were still at the hospital midafternoon. I got into my Jeep and drove over to join them, my heart racing the whole way. It was one of those Southern California days that people often said they hated, sunny and hot. I dismissed summarily the complaint, often from easterners, that the region offered no seasons. A rather unsophisticated lot, these complainers, at the very least lazy. Signs of seasons abounded in Los Angeles and around, more subtle than the abundant death of leaves that so many seemed so in love with. The blooming of flowers and trees, the appearance of various birds. In the spring, the phainopepla appeared, the males showing off their white-patched wings. Purple finches in the fall. Santa Ana winds blowing hot through October. Rains in the winter. The sun there was bright, often too bright, somehow too close, and it was so that day, hammering on me as I drove.
It irked me that Children’s Hospital was so decidedly cheerful. It irked me that I was irked by it. Why shouldn’t the place have been cheerful? It was, after all, where most children got better. I should have believed that because of all the happy colors and tanks full of smiling fish and bright, shiny, floating balloons that my child would be made better as well. I wanted to believe that, but apparently I didn’t. I had sunk into a pessimistic wormhole, and, knowing I couldn’t extricate myself, I at least resolved to hide my fear.
I followed the red line on the floor to neurology. That unwavering, resolute red line. Situated between the blue and yellow lines, leading past the big fish tank, over the pedestrian bridge, having no meaning by its being red but meaning everything because it was red. I followed, chased, heeded the red line until it led me to my daughter.
Somehow my red line following got fouled up, and I arrived again at the big aquarium, where I stood staring at the oversized angelfish that decided to stare back at me. Something that Sarah had told me was called a black ghost slithered his eel body through my peripheral vision. I imagined that if I chose to hallucinate at that moment, the angelfish would speak to me, say something cryptic and profound; as I stood there entertaining this weird notion, it dawned on me that I was essentially hallucinating anyway. I looked down, rediscovered the red line, and set off again with neither more nor less resolve. This time I found Dr. Gurewich’s office and my family.
Sarah embraced me as if she had not seen me in a very long while. It surprised me, scared me somewhat, though I loved the feeling of it, being reminded of when she was so much my baby. She had never felt smaller.
Dr. Gurewich called in a nurse. “Melissa, would you take Sarah and get her blood pressure, respiration, and heart rate?”
It was so clear that she was simply removing Sarah from the room that I became immediately terrified. Meg saw it in my eyes, and I saw it in hers.
“We’ll be right here, baby,” Meg said to Sarah.
The nurse led her away and closed the door.
Gurewich’s eyes looked tired. She rubbed her forehead and temples and appeared to be not all there.
“Were you up late?” I asked her.
She absently reached into her knitting basket and pulled a skein of blue yarn onto her desk. “No,” she said. She paused and kneaded the yarn with her hand. “Sometimes I get migraines.”
I nodded. “What have you learned?”
“That scents often bring them on,” she said.
“About Sarah,” I said.
“Of course.” The doctor collected herself.
“What is it?” Meg asked.
“I first became suspicious when Sarah’s urine tests showed dolichol. So we took a closer look and did find vacuolated lymphocytes. Those are white blood cells that have holes in them.”
“Okay,” I said.
“There is a group of disorders called neural ceroid lipofuscinoses. NCL.”
“Okay.”
“I believe—I strongly believe—that Sarah has Batten disease. That would explain all of her symptoms. Her skin and tissue samples support this diagnosis.” Gurewich kneaded her yarn.
“How do we treat it?” I asked.
Meg was silent.
“We can’t,” Gurewich said.
“You mean she’ll just live with it, have these seizures? Can we control the seizures?” I asked.
Gurewich leaned even more forward. “There is nothing we can do.”
“Excuse me?” I said.
“What are you talking about?” Meg asked. “What are you saying?” She stood up and sat right back down.
I took Meg’s hand.
“The DNA analysis shows a mutation in the CLN3 gene on chromosome sixteen.”
“Are you saying that one of us gave our child this?” Meg said.
“It’s a recessive trait. It comes from both of you. You are both what we call unaffected carriers. There would have been no way for you to know.”
Meg pushed my hand away, gently, but away, ostensibly to find a tissue in her bag.
Empidonax sp. A right humerus with a damaged head was taken from the 20–25 cm level. Too few properly prepared reference specimens of the various species were available to make accurate species determination. The characters of the subfossil appear nearer E. hammondii than E. difficilis, but it is closer to the latter in size.
There was no other way to say it, except of course that we were left to say it ourselves, though not out loud; that would have been too much. Our daughter was dying. My little Sarah would not survive this genetic defect. I was lost. Meg was lost. She couldn’t even blame me for what was happening. For her sake, I wished that she could have.
Over time, my daughter would suffer worsening seizures, her sight would finally fail altogether, her speech and motor skills would grow progressively worse and fade, and she would suffer mental impairment; she would become demented. I would lose her before she was gone. Selfishly, my first impulse was to find the cheap, old, five-shot .38 that had once been my father’s but was now hidden away in a trunk, put the muzzle inside my dry mouth, and pull the trigger. My usual response to all situations (namely, to search for and implement a solution) had been effectively taken away. There was no solution. Even the quickest study of the disease left no room for doubt. My daughter would not be cured; her life would not be made better in what abbreviated time remained for her. And worst of all, worst of all, my daughter was all too capable at that moment of understanding the gravity of her situation. How does a parent tell his daughter that she will not only die young but that she will essentially fall apart on her way to her end? Does a father tell his daughter? I looked at Meg. I wondered if she would be able tell her daughter, my daughter, our daughter.
We did not tell her that night. We told her that the doctor thought she had epilepsy, that she had to determine what kind of medication she would take, that we believed everything would be all right, that she would live a long life. Our lie was made okay because we left ourselves an out: we had said we believed she would be well, not that we knew, not that it was a fact, not that it was true. Belief was a wonderfully plastic notion. We put her into bed and tucked her in, as we did when she was two, warm under her blanket and our lie.
In the dining room we sat and did not speak. I could think of nothing to say. I couldn’t imagine what Meg might say. What amazed me was that I did not let my mind wander to my work, my usual refuge, distraction, safe harbor. I would not be sleeping. Meg and I needed space at that moment, not each other. Correct or not, that was my reading.
“I need to think,” I said. I left the house.
De Homine
And so the world was different. I drove from my house on that Thursday night through the busy place that was Old Town Pasadena, a sweet and glittery advertisement for wholesome American nightlife. Everyone appeared so light and carefree, floating along, laughing, feeling safe. I continued south on the 110 to downtown, to a restaurant bar on Main Street just a block away from skid row, a place that I had heard mentioned on campus by a few grad students, named, quite understandably, the Bar on Main Street. Downtown Los Angeles was making its way back to presenta
bility but still wore the grime and dirt I needed at that moment. I didn’t really remember just how to drink stupidly, but I imagined it would not be difficult to figure out. The door was in the shape of a big keyhole, and I surprisingly fit right through it. Strangely, since I had heard some students mention the place, but not so strangely from the overall look and tenor of the joint, there were, in fact, no students inside, just a bunch of rough men and a couple of women who looked even rougher. The bartender, a short man with only half a mustache, asked me what I wanted.
He caught me staring at his lip. “I lost a bet,” he said. “What do you want?”
“Scotch,” I told him.
“What kind?”
“Any kind,” I said.
“Cutty Sark?”
“Sure.”
“Ice?”
“No.”
“Water?”
“Just the scotch.”
I looked at the door, perhaps hoping for a familiar face to enter, perhaps just because it was the door and the way out. My drink was delivered and I downed some. The whisky burned my throat and made my eyes well up. I coughed. Actually, I gagged.
A guy a couple of stools over laughed at me. I didn’t mind. He was about my size but wanted to seem larger in his leather jacket, which maybe wasn’t such a bad thing in a place like this. “Go easy there, tough guy,” he said. “Jimmy, give the man some water,” he called to the bartender.
“Thank you,” I said to the bartender and then to the man down the bar. I drank some water, then tried another sip of whisky.
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