Nemesis

I admit to being in denial about autism as an epidemic, in spite of the tsunami of loud voices to the contrary— including expert-authored analyses in medical journals, countless magazine and newspaper articles, documentary films, TV specials, and memoirs. “Autism rates are exploding!” the alarm sounds, though opinions vary widely about what combination of environmental toxins or genetic predispositions are the cause or how much the increased numbers can be attributed to better diagnostic methods. Since our son’s diagnosis, the projected the rate of autism has more than doubled—going from 1-in-200 to 1-in-166 to 1-in-100. The National Institutes of Health puts the rate even higher at 1-in-88 and claims it affects one in 54 boys. Our immediate neighborhood mirrors these numbers, first there was only our son and a grown man I thought might be autistic, but within a year, three more young boys. At school “every classroom has a child on the spectrum somewhere,” the school district officials argued when we fought to get a classroom aide for our son. How was it that I had lived for 46 years with only the vaguest Rain Man notion of autism? I hadn’t recognized what I now see as autism in my own childhood friends. Few gave it a name back then, or they kept it close. Now there was no getting away from it.

“Ours,” some say is “the age of Autism.” And this much rings true. Whenever my son’s autism comes up in conversation with people about to have children, I see the anxiety on their faces: Will it happen to us? Every generation has it nemesis, or nemeses, and one of ours is certainly autism. Most couples deciding to have children in the 21st Century—especially the older couples—count autism as a probable risk. According to AutismSpeaks.org, more children are diagnosed with autism in a year than with diabetes, cancer and AIDS combined.

So, though I don’t buy autism as an epidemic, I find myself comparing it to other epidemics. Under the surface, subconsciously perhaps, I fear some people will mistake autism as a kind of disease that spreads in the air—a neuro-contagion if you will, because there are moments when I see people giving Colin a wide berth. Or I think that’s what I’m seeing.

Once, Colin and I were sitting outside a bakery: he was humming and spinning around in his own unique dance while tossing bits of fresh bread to an ever larger gathering of pigeons. He was, of course, oblivious that anyone would see what he was doing as strange in any way or that he was blocking the path of two teenage girls who had stopped in their tracks. One of the girls had a look of revulsion on her face, a fear in her eyes that reminded me of the day I returned from Toronto during the SARS epidemic. The American customs officials eyed us all with suspicion—the fear of contagion—from behind blue face masks. They wore matching blue rubber gloves to handle our papers. I remember feeling like I had done something wrong just by being on the Canadian side of the border at that particular time. After a few seconds, the girls rushed past Colin and I, covering their food with their napkins. One of them said, “They carry disease!” It took me longer than it should have to realize she was talking about the pigeons.

In his novel Nemesis Philip Roth tells the story of the 1944 polio outbreak in the Jewish section of Newark, New Jersey. As the number of cases mounted, parents feared the worst for their children and panicked at the first sign of headache, nausea, joint pain, fever, or sore throat. The epidemic of 1916 was still clear in mind, when 27,000 cases in the northeastern United States claimed more than 6,000 lives—363 deaths in Newark itself. This nemesis—Poliomyelitis, a paralytic disease—could kill a child in a matter of days or permanently disable and deform, leaving them “unable to breathe outside a cylindrical metal respirator tank known as an iron lung,” Roth writes. “No medicine existed to treat the disease and no vaccine to produce immunity.” Children up to sixteen were thought to be especially at risk, though adults could also be severely infected, just as President Franklin Delano Roosevelt had been at age 39. In order to stand he wore “heavy steel-and-leather braces from his hips to his feet.”

Fear of the disease hung heavy over the city in 1944 as the summer heat locked in. Suspicions spread. The city of Newark was partially surrounded by wetlands and the inevitable swarms of mosquitoes and flies. If flies and mosquitoes could carry malaria, yellow fever and typhoid fever (all fearsome nemeses in their own right), why not polio? Alley cats and stray dogs and pigeons were suspects, as well as infected milk from dirty cows or unsterilized milk bottles. Since nobody knew the source of the polio contagion, suspicions ran unchecked. The Board of Health initiated a systematic extermination of Newark’s population of alley cats. Parents prohibited their children from public swimming pools, movie theaters, playgrounds, buses, public toilets, drinking fountains, sharing some else’s soda-pop bottle, borrowing books from the public library, or using a public pay phone. They shunned the neighborhood diner because someone who ate a hotdog there contracted the disease. Public became nearly synonymous with polio. People stayed home. They washed with soap and water obsessively and avoided anyone who looked sick. In Roth’s novel, “a retarded boy with spittle at the corners of his mouth” is loathed and treated as a carrier—a bringer of death. People feared the dirty Newark pavement and stagnant city air. City officials increased garbage pickup to every other day. They fumigated and disinfected. They washed down their schools and homes with hot water and ammonia.

People blamed the hog farms of neighboring Secaucus—as if just breathing in the stink could spread disease. They blamed the smoke from nearby refineries. Even a fresh breeze bringing relief from that summer’s heat wave could be blowing “polio germs around in the air.” Those who could afford it blamed the city’s heat and sent their children off to summer camps in the cooler, “cleaner” mountains, even though there were outbreaks at the camps, too. Some wondered “if polio couldn’t be caused by the summer sun itself,” Roth writes.

You could tell this same story about measles, whooping cough, diphtheria, smallpox, and tuberculosis, or AIDS, certainly another—and far more deadly—nemesis of my generation.

Colin first learned about AIDS on one of our many hikes through Red Butte Garden in Salt Lake City. One hot afternoon our family walked a bit too far into the labyrinth of trails and my wife and I found ourselves carrying our young boys back up the hill to the car. Four-year old, Quinn, soon fell asleep in Maura’s arms, but Colin’s energy revived once he was perched on my shoulders. He shrieked in my ear if I tried to pass any lookout or side path without exploring it. Not a typical child’s whining, but a scouted command—a bark. As often happened, a firm expectation had formed in Colin’s mind that could not be changed without a fight. This time he wanted to see every path that forked off the main trail. Maura and I knew we were on the brink of a tantrum and without a word chose to give in this time. Maura pressed on to the car with Quinn and I submitted to Colin’s wish, ignoring my burning legs and dutifully turned off at every path as we made our way up the hill. Half way up we turned into a shady nest tightly enclosed in Aspens, a path reaching no more than 20 feet off the main trail. At the end of it was a bench—God is great—and I sat down. From inside the enclosure I could hear other hikers passing and I could hear a wedding reception kicking into high gear (everyone into their third drink), but I couldn’t see anyone. Though I had walked up this road dozens of times, I had never seen this exquisite place before. It took Colin’s insistence—okay, I’ll say it, his autism—to get me there. We both came under the spell of the aspen leaves and relief from the afternoon sun. Colin tilted back so far to look up into the trees that he almost fell off behind me.

It was only when I stood up to leave that I saw the bronze plaque on the bench. It was dedicated to a man I had worked with, shared an office with, ten years before, a man I’ll call Richard who had died of AIDS. I had hired Richard for a job on our public relations team even though something strange happened when we called his house to give him the news. A woman answered the phone and I assumed she must be Richard’s wife, since he had told us about his wife several times during his interviews. Phrases such as “That sounds just like something my wife would do” or “my wife always tells me . . .” came up often enough during the interviews that I felt like I knew her well enough to say, “You must be Richard’s wife.” But the woman on the other end of the phone was silent for a few beats and then said in a heavy Hispanic accent, “Reechord . . . he no have no wife . . . I weel geet heem por you.”

My manager and I were both in the conference room to make the call. My manager put the phone on mute.

“Didn’t Richard say he was married?”

“Well, he did talk a lot about his wife.”

“Could he be recently divorced?”

“That’s possible.”

We knew we had only seconds before Richard came to the phone. I suspect we both had the same questions running through our minds. Why had he lied to us? Did he think he had a better chance of being hired if he was married? Was he trying to hide that he was gay fearing we would hold it against him? Yet he was well qualified for the job. We had interviewed a dozen other people. We both liked him and needed him to share the workload.

We could hear the sound of someone picking up the phone. My manager reached toward the button to un-mute the phone, but paused, looking up at me. He said, “I’m not worried about this imaginary wife thing. Are you?” “I’m not,” I said.

We gave him the job and we weren’t sorry. An unselfish team player, Richard worked hard and rarely complained. In fact he went out of his way to remind us he was grateful for the job. After a few months, however, signs of poor health were unmistakable. Already a thin man the first time we met, he continued to lose weight. His hands sometimes shook when he held up a glass to drink or unplugged a cable from his computer. When we traveled to trade shows and occasionally shared a room, he would line up pills to swallow. He packed a humidifier and kept it going in the room—“Do you mind?” he asked. “I can’t sleep without it. My throat gets so dry.” He struggled to read the small print on the prescription bottles and carried a small magnifying glass for the purpose. Once he misplaced the magnifying glass and asked me for help to read the dosage. I don’t remember the names of the medications, but I knew what troubled him went far beyond allergies or sinus infections. After a day in the exhibit hall, he would collapse in exhaustion once back in the room and turn down offers to join the rest of us for dinner. I thought he may have cancer or be recovering from it. He was carrying a heavy burden, an isolating secret. But I didn’t feel I should ask about it.

Once when a group from the office went out to lunch, Richard, who typically listened far more than he talked, told us in a hushed voice, strained with emotion, about his brother who died of a head injury many years before. Richard had been a teenager at the time and he stayed home with his younger siblings while his parents kept vigil at the hospital, day and night, for a week. Then one night, when everyone else was asleep, Richard’s parents returned home. He didn’t need to ask about his brother. “They were so tired,” Richard told us, “No, it was more than that. They had grown old. They were never the same. I swear their hair had gone gray. They looked so old.” Then he broke down and sobbed, covering his face with his hands. I had never seen someone so open and vulnerable. I have never forgotten it. From that moment, I felt a strong loyalty to Richard, a protectiveness I still feel even writing this down.

It wasn’t long after this incident that Richard called into work from the hospital. He told us he was fine and there was no need to worry or visit, but after a second week, a group of us went to hospital to visit anyway and were surprised to find him in a remote wing, isolated from other patients. The nurses only let us stay a few minutes.

Richard rallied and returned to work. Months passed.

Then came a terrible day when dozens of people were laid off, Richard among them. The layoff came as a surprise to me. My manager called me into his office and explained what was happening in the next room and asked me to stay in the office with him until everyone had been informed. For whatever reason they felt they couldn’t trust me with being involved in this decision, or perhaps they were protecting me from the difficulty of what they had to do.

Richard took me aside once everything had been announced and he had packed up the personal items from his office.

“Is it because I was sick?” He asked me.

I explained that I had not seen this coming, that many others had also been let go. I didn’t think it had anything to do with being sick or with his performance.

He cut me off, “Is it because I’m gay?”

This was the first time he had said anything about being gay. I assured him that I couldn’t imagine it could have anything to do with it. He looked at me hard for a few seconds, and then his face softened. He patted me on the back and started toward his car. He said, “I’m afraid to tell my wife about this.” That was the last time I saw him.

A year later I attended Richard’s funeral not a hundred feet from the place where Colin and I were now standing. Folding chairs were set out on the grass, rows of flowers all around. The setting was more like an outdoor wedding than a funeral.

Colin read the plaque and looked up at me. “Who is Richard Hawkins 1960 to 1997?”

“He was a man I knew. I worked with him. I attended his funeral here at the garden, but I never knew about this place, this memorial.”

“What happened to him?”

“He died of AIDS.”

“I have an aide at school. Robyn and Hanni are my aides.”

“Oh, not those kinds of aides buddy. This was a sickness he had.”

“What did the sickness do?”

“Well, his body couldn’t protect itself. He caught everything. Every cold, every flu, you know, everything just knocked him over.”

“He fell over?”

“Well, no, . . . I mean it just wore him out. He was always sick and he couldn’t tell us why. He had to keep it a secret. He was so isolated. He had to handle everything on his own.”

Colin said: “My daddy, I think Richard Hawkins 1960 to 1997 was autistic.”

This was one of those times when I knew I had said too much to answer Colin’s questions, when I was talking out loud to myself more than talking with him, thinking it didn’t really matter. But of course it matters. It always matters. Colin listens. He may not come when you call or seem to ignore your questions, but he doesn’t miss much. I thought about the vitamin supplements we gave to Colin every night and morning to bolster his weak immune system, how we ran a humidifier almost every night in his room, how we had to avoid using the word autism in front of him, and how many times it had slipped out anyway.

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About slcantwell25

A writer focused on the transforming power of memory, autism, parenting, and the ways we know what we know.
This entry was posted in Essays and tagged , , , , , , , . Bookmark the permalink.

3 Responses to Nemesis

  1. Ms. Boice says:

    Wow Steve. I really love this post.

  2. athenivandx says:

    Fascinating! I’ll have to read this again sometime when it’s not so late at night. Im a night owl 🙂

    Ivan

  3. Jane says:

    Thanks for writing this account of “Richard’s” story Steve. That was such a sad time. I often think of him and wish the aids drugs had come along earlier.

    Jane

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