Key West — Jan. 29, 2004
Once again my husband and I line up for sunset cruise tickets on the tall vintage schooner Western Union, which sways in its dock here at the end of William Street, here at the end of America.
"How many?" The handsome blonde in the ticket booth looks like she used to be a man.
"Three," I say.
"Two," Hal says, turning around to look at me.
"So how many is it?" She drums her long nails on the wooden counter.
"Two," Hal says. He gives her his credit card.
She slides over two tickets for the sunset cruise and two coupons for free drinks, which we order on the roof of the Schooner Wharf Bar where we wait until time to board. This year we are here without my son, Josh, who died in his sleep this past Oct. 26. The cause of his death was an "acute myocardiopathy," the collapse of an enlarged heart brought about, in part, I believe, by all the weight he had gained while taking an antipsychotic drug. He was 33; he had been sick for half his life, doing daily heroic battle with the brain disorder that first struck while he was in a program for gifted teen musicians at the Berklee College of Music in Boston, the summer between his junior and senior years in high school.
Back in Chapel Hill, we'd started getting wilder and wilder phone calls from him about "birds flying too close to the sun," reports of all-night practice sessions on the piano, strange encounters in the park, and no sleep—no sleep, ever. He flew home in a straight jacket.
Then the hospitalizations began—first a lengthy stay at Holly Hill in Raleigh followed by a short, heart-breaking try at returning home to normalcy and Chapel Hill High; then longterm care at Highland Hospital in Asheville, where he lived for the next four years, sometimes in the hospital itself, sometimes in their group home, sometimes in an apartment with participation in their day program. For a while he was better, then not. All kinds of fantasies and scenarios rolled through his head. He moved, talked and dressed bizarrely; he couldn't remember anything; he couldn't even read. We brought him back to UNC Neurosciences Hospital. They referred him to Dorothea Dix's test program for the new "wonder drug" clozapine, just legalized in this country (1992).
Up on that beautiful, windy hill looking out over the city of Raleigh, Josh started getting truly better for the first time. He could participate in a real conversation; he could make a joke. It was literally a miracle.
He was able to leave the hospital and enter Caramore Community in Chapel Hill, which offered vocational rehabilitation, a group home and then a supervised apartment—as well as a lot of camaraderie. He came in with some great stories as he worked with the Caramore lawn and housecleaning business ... my favorite being the time the housecleaning crew dared one of the gang to jump into the baptismal pool at a local church they were cleaning—and then they all "baptized" him on the spot. Before long he graduated into a real job at Carolina Cleaners. Against all odds, Josh had become a "working man," as he always referred to himself; his pride in this was enormous.
Though other hospitalizations ("tune-ups," he called them) would be required from time to time, Josh was on his way. He lived in his own apartment, drove a car, managed his weekly doctor visits, blood tests, pharmacy trips and medication. But as the most important part of his own "treatment team," he steadfastly refused his doctor's eventual urging to switch to one of the newer drugs, such as olanzapine, risperidol or geodon, in hopes of jump-starting his metabolism. Clozapine had given him back his life, and he didn't want to give it up. And in spite of his weight and smoking, he seemed healthy enough; physical examinations didn't ring any warning bells.
Josh became a familiar figure in Chapel Hill and Carrboro, with friends and acquaintances all over town—especially his regular haunts such as Weaver Street and Caffe Driade, where he went every day. Josh worked at Akai Hana Japanese Restaurant in Carrboro for the last seven years of his life, doing everything from washing dishes to prep work to lunchtime sushi chef. He was the first one there every morning—he opened up and started preparing the rice. It was his favorite time of the day, as he often said. He played piano at Akai Hana every Saturday night: a mix of jazz, blues and his own compositions.
The live music produced by the Wharf Bar's Jimmy Buffet wannabe band is way too loud, and our drinks, when they come, are a startling shade of red, with umbrellas in them. Hal raises his plastic glass high. "Here's to the big guy," he says. We drain them.
Josh considered the schooner trip a requisite for his annual Key West experience. He loved the ritual of it all, beginning when the crew invited the evening's passengers to participate in raising the mainsail. He always went over to line up and pull, passing the halyard hand over hand to the next guy. He loved to stand at the rail as we passed the town dock and Mallory Square, where all the weird pageantry of the sunset was already in full swing: the tourists, the guy with the trained housecats, the flame swallower, the escape artist tied up in chains, the oddly terrifying cookie lady. The aging hippie musician on board invariably cranked up "Sloop John Bee" as we headed out to sea while the sun sank lower on the starboard side. The sun was so bright that I couldn't even face it without sunglasses, but Josh never wore them. He just sat there perfectly still, staring straight into the sun, a little smile playing around his lips.
What thoughts went through his head on that last voyage?
Perhaps more to the point, what thoughts did not go through his head, in this later stage of schizophrenia characterized by "blank mind" and "lack of affect?" Gone the voices, gone the visions, gone the colored lights, to be replaced by ... what? Maybe nothing, like the bodhisattva, a person who has achieved the final apotheosis, beyond desire and self. Here he sat, an immense man in a black T-shirt and blue jeans, silent, calm, apparently at peace. He no longer seemed to know what he had lost. Some call this a "blessing," and some days I am among them; but most days I am not, remembering instead that wild boy of 17 who wanted the world—all the music; all the friends, BMX bikes and skateboards; all the poetry; all the girls—all the life there ever was.
Now the captain is blowing the conch shell from the deck of the Western Union. We stand. The sun slants into our eyes. A breeze is coming up. I pull on my windbreaker, fingering the little bronze vial of ashes in my pocket.
Last January (2003) Josh and I flew into Key West together, arriving late on a cool and blustery Tuesday night around 9 p.m. Wind rattled the palm fronds as we walked out onto the brightly lit but somehow lonely looking Duval Street. Only a few people scurried past, their shoulders hunched against the wind. We passed the funky Chicken Store, a "safe house" for the much-maligned chickens that have overrun Key West. We passed the Scrub Club, an "adult" bathhouse that usually featured its scantily clad ladies blowing bubbles over the balcony rail, calling out, "Hi there! Feeling dirty? Need a bath?" to the amused passersby. But it was too cool for bubbles that night, and the girls were all inside behind their red door. The wind whipped paper trash along the street.
We crossed Duval and went into the friendly looking Coffee and Tea House, where big trees overhung an old bungalow with a porch and yard filled with comfortable, mismatched furniture. Josh was very tired. He had that out-of-it, blank look he sometimes gets, almost vegetative, like a big sweet potato. We walked up the concrete steps and into the bar with its comforting, helpful smell of coffee brewing. People clustered at little tables, on sofas, in armchairs in adjacent rooms, talking and reading the newspapers strewn everyplace.
The bartender's long, gray hair was pulled back into a ponytail. He came over to Josh and said, "What can I get for you, sir?"
"Well, I'll tell you," Josh said in a surprisingly loud voice (maybe it even surprised him), shaking his head like a dog coming up from under the water. "I'll tell you, buddy, I don't know what the hell it is I want, and I don't know where the hell it is I am, and I don't know what the hell it is I'm doing!"
Heads along the bar swiveled, and the bartender burst out laughing. "In that case, sir, you've come to the right island!" he announced, as everybody applauded.
Josh had found his Key West home for the next week. At bars or beaches, he talked to everybody; you never knew what he was going to say next.
He told a great version of the Christmas story, too, conflating the Bible with O. Henry: "Once upon a time there was a young girl who was very sick, and somehow she got the idea that she would die when all the leaves fell off the tree that grew just outside her bedroom window. One by one they dropped. She got sicker and sicker. Finally there was only one red leaf left on the tree; she was just about to die. That night while she was asleep, Jesus flew up to her window. Jesus was a French artist. He wore a red beret. So he brought his box of oil paints with him and painted red leaves all over the window, finishing just as the sun came up and the last red leaf fluttered down to the ground. Then he flew away. Then she woke up, and she was well, and it was Christmas."
Answering the question of whether or not he believed in Jesus, he said, "Well, I don't know. Every time I'm in the hospital, there are at least three people in there who think they're Jesus. So sometimes I think, well, maybe Jesus wasn't Jesus at all—maybe he was just the first schizophrenic."
Josh's eventual diagnosis was schizo-affective, meaning partly schizophrenic (his mind did not work logically, his senses were often unreliable, his grip on reality sometimes tenuous) and partly bipolar—actually a blessing, since the characteristic "ups and downs" allowed him more expression and empathy. But diagnosis is tricky at best. The sudden onset of these major brain disorders usually occurs in the late teens or early twenties, and it's usually severe. But all psychosis looks alike at first. There's no way to distinguish between the "highs" of bipolar illness, for instance, and the florid stage of schizophrenia—or even a garden variety LSD psychosis. Reality had fled in every case. The best doctors make no claims; "Wait and see," they say.
As far as prognosis goes, medical folklore holds to a "rule of three": About a third of all people with major psychotic episodes will actually get well, such as Kurt Vonnegut's son, Mark, now a physician who wrote the memoir Eden Express. The next, larger group will be in and out of hospitals and programs for the rest of their lives, with wildly varying degrees of success in work and life situations; the final group will have recalcitrant, persistent illnesses which may require lifelong care or hospitalization—though now, I suspect, the new drugs and community care models have shrunk this group considerably.
But here's the bottom line: All mental illnesses are treatable. Often, brain chemistry has to be adjusted with medication. If symptoms occur, go to the doctor. Don't downplay it, don't hide it—seek treatment immediately. Mental illness is no more embarrassing than diabetes. And the earlier we get treatment, the more effective it will be. I myself could never have made it through this past year of grief and depression without both counseling and medication. We are also lucky to have organizations and support groups in this area to help us and our families cope. As Josh proved, very real, valid and full lives can be lived within these illnesses.
Now my husband and I sit discreetly at the very back of the Western Union, right behind the captain at the wheel. He has given the order; the crew has cried "fire in the hole" and shot off the cannon. We have covered our ears. We have gotten our complimentary wine, our conch chowder. We have listened to our shipmates talk about how much snow they left behind in Cleveland, how many grandchildren they have, and how one guy played hockey for Hopkins on that great team in 1965. Then we duck as, with a great whoosh of the jib, we come about. We sit quietly, holding hands, hard. Now there's a lot of wind. All around us, people are putting on their jackets.
Independent of any of this, the sky puts on its big show, gearing up for sunset. The sun speeds up as it sinks lower and lower. The water turns into a sheet of silver, like a mirror.
Like Hal, Josh was a major sunset man, always looking for that legendary green flash right after the sunset, which nobody I know has ever actually seen, though everybody claims to have known somebody who has seen it. Here where sunset is a religion, we never miss the moment. In Key West the sun grows huge and spreads out when it touches the water, so that it's no longer round at all but a glowing red beehive shape that plunges down abruptly to the thunderous applause of the revelers back at Mallory Square.
"Get ready," Hal says in my ear. "But look, there's a cloud bank, it's not going to go all the way."
I twist the top of the vial in my windbreaker pocket.
The sun glows neon red, cut off at the bottom by clouds.
A hush falls over the whole crowd on board the Western Union. Everybody faces west. Cameras are raised. It is happening.
"Bon voyage," Hal says. Suddenly, the sun is gone. The crowd cheers. I throw the ashes out on the water behind us; like a puff of smoke, they disappear immediately into the wake. I say, "Goodbye, baby." Nobody notices. The water turns into mother of pearl, shining pink all the way from our schooner to the horizon. The scalloped edge of the puffy clouds goes from pink to gold. The crowd goes "aah." Goodbye baby. But no green flash. The crowd stretches, they move, they mill around on deck. The light fades and stars come out.
I don't agree with the theory that mental illness conveys certain gifts. Even if this sometimes seems to be the case, as in bipolar disorder's frequent association with creativity, those gifts are not worth the pain and devastating losses the illness also brings with it. Yet sometimes there are moments....
I am remembering one starry summer night back in North Carolina, the kind of breathtakingly beautiful summer night of all our dreams, when Josh and I took a long walk around our village. He'd been staying with us for several days because he was too sick to stay in his own apartment. He'd been deteriorating for months, and his doctor had arranged his admission to UNC's Neurosciences Hospital for the next morning. Josh didn't know this yet. But he was always "compliant," as they call it. We were very lucky in this. My friend's son wouldn't take his medicine and chose to live on the street; she never knew where he was. Schizophrenia is like an umbrella diagnosis covering a whole crowd of very different illnesses; but very few people with brain disorders actually become violent, despite the stereotype.
Josh liked the hospital. It was safe, and the world he'd been in that week in North Carolina was not safe, not at all, a world where strangers were talking about him and people he used to know inhabited other people's bodies and tables turned into spiders and all the familiar landmarks disappeared so that he couldn't find his way anywhere. He couldn't sleep, he couldn't drive, he couldn't think.
Yet on that summer night in Hillsborough, a wonderful thing happened. We were walking through the alley between the old Confederate cemetery and our back yard when we ran into our neighbor Allan.
"Hi there, Josh," Allan said.
Instead of replying, Josh sang out a single note of music.
"A flat," he said. It hung in the hot honeysuckle air.
"Nice," Allan said, passing on.
The alley ended at Tryon Street, where we stepped onto the sidewalk. A young girl hurried past.
"C sharp," Josh said, then sang it out.
The girl looked at him before she disappeared into the Presbyterian Church.
We crossed the street and walked past the young policemen getting out of his car in front of the police station.
"Middle C," Josh said, humming.
Since it was one of Hillsborough's "Last Friday" street fairs, we ran into more and more people as we headed toward the center of town. For each one, Josh had a musical note—or a chord, for a pair or a group.
"What's up?" I finally asked.
"Well, you know I have perfect pitch," he said—I nodded, though he did not—"and everybody we see has a special musical note, and I can hear every one." He broke off to sing a high chord for a couple of young teen girls, then dropped into a lower register for a retired couple eating ice cream cones.
"Hello," another neighbor said, smiling when Josh hummed back at him.
So it went all over town. Even some of the buildings had notes, apparently: the old Masonic Hall, the courthouse, the corner bar. Josh was singing his heart out. And almost—almost—it was a song, the symphony of Hillsborough. We were both exhilarated. We walked and walked. By the time we got back home, he was exhausted. Finally he slept. The next day, he went into the hospital.
Josh loved James Taylor, especially his song "Fire and Rain." But we were too conservative, or chickenshit, or something, to put it on his tombstone, the same way we were "not cool enough," as Josh put it, to walk down the aisle to "Purple Rain" (his idea) while he played the piano on the day we got married in 1985.
But now I say the words to Hal as the light fades slowly on the water behind us.
I've seen fire and I've seen rain
I've seen sunny days that I thought would never end
I've seen lonely times when I could not find a friend
But I always thought that I'd see you again.
Well, I won't. I know this. But what a privilege it was to live on this earth with him, what a privilege it was to be his mother. There will be a lessening of pain, there will be consolations, I can tell. But as C.S. Lewis wrote in On Grief: "Reality never repeats... . That is what we should all like, the happy past restored"... as it can never be, and maybe never was. Who's got perfect pitch, anyway? Yet to have children—or simply to experience great love for any person at all—is to throw yourself wide open to the possibility of pain at any moment. But I would not choose otherwise. Not now, not ever. Like every parent with a disabled child, my greatest fear used to be that I would die first. "I can't die," I always said whenever any risky undertaking was proposed. So now I can die. But I don't want to. Instead, I want to live as hard as I can, burning up the days in honor of his sweet, hard life.
Night falls on the schooner ride back to Key West. I clutch the bronze vial that held some of Josh's ashes, tracing its engraved design with my finger. The wind blows my hair. The young couple in front of us are making out.
"Let's get some oysters at Alonzo's," Hal says, and suddenly I realize that I'm starving.
"Look," the captain says, pointing up. "Venus."
Sure enough. Then we see the Big Dipper, Orion, Mars. Where's that French artist with the red beret? No sign of him, and no green flash, either—but stars. A whole sky full of them by the time we slide into the dock at the end of William Street.
Lee Smith lives in Hillsborough with her husband, Hal Crowther. Her latest novel is The Last Girls.