Some suspected that the entire process might be leading the field astray—sending researchers once again to go look for their lost keys where the light was, not where the keys really might be. After all that work, the underlying nature of schizophrenia remained a matter of intense debate. “Is it a classical organically based biomedical disorder,” the psychiatric geneticist Kenneth Kendler wondered in 2015—like, say, Alzheimer’s disease was thought to be—“or is it the severe end of a spectrum of syndromes that aggregate together in families?”
Lynn DeLisi knew where she stood on the matter. She’d known for years. “My thought was, ‘I don’t believe that these hundred genes or markers are going to lead to anything,’ ” she said. “I want to see what’s causing schizophrenia in these large families like the Galvin family.”
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WHEN PFIZER PULLED the plug on DeLisi’s research into families with schizophrenia in 2000, she was forced to stop all of her work. Like the parties in a divorce, she and Pfizer divided her physical samples from her families straight down the middle. The term in research is “aliquoted”: She and Pfizer each walked away with one half of each of her blood samples, enough material, in theory, for both parties to continue work. But in a cruel irony, no work would continue: DeLisi had the will to keep going but not the money, while Pfizer had the money but lacked the will.
Why would any large pharmaceutical company not want to try to develop a better drug for schizophrenia—one that might hit a genetic target and resolve issues that Thorazine and its offshoots never could touch? The reasoning at the time, according to professionals dealing with those companies, was pretty clear. Even with a genetic target, like Freedman’s α7 receptor, the pipeline to develop and test such a drug was extremely expensive, requiring human subjects willing to endure unpredictable side effects. Which would be all right if there was a likely financial benefit at the end of that pipeline. As it stood, Thorazine and its offshoots had been around for so long that virtually every company had its own version; these drugs were so stable and so effective at soothing psychotic episodes that it was hard to financially justify spending money to develop something new.
DeLisi called what happened with Pfizer “a disaster.” With no other options, she kept her half of more than a thousand blood samples from three hundred families—including her half of each of the samples from members of the Galvin family—in a freezer at her new position at New York University. After a blackout hit New York City in 2003, DeLisi gave her samples to a colleague at another institution for safekeeping—first Cold Spring Harbor, then the University of California in San Diego.
DeLisi’s family samples weren’t so much gone as they were in exile. She had no idea how long it would take to bring them home again.
DON
MIMI
DONALD
JIM
JOHN
MICHAEL
RICHARD
JOE
MARK
MATT
PETER
MARGARET
LINDSAY
CHAPTER 34
After his time in Boulder with Lindsay, Peter returned to the same revolving door between Pueblo and Hidden Valley Road. His sister gave up her legal guardianship so that Peter would be treated as a ward of the state, allowing him to stay for long periods at state hospitals if needed. His current diagnosis was bipolar disorder, rounded out by the occasional delusional episode. For a decade, each hospitalization lasted just long enough to get him out on his own again. Each trip into the real world lasted only as long as he took his meds.
By 2004, he was forty-three years old, more ragged around the edges, thinner, more addled. On February 26, after a two-month stay at Pueblo, he was released on Risperdal, an antipsychotic, and Depakote, an epilepsy medication that also works as a mood stabilizer for bipolar patients. He had not been taking either when he was readmitted three days later, on February 29, convinced that George W. Bush was bombing the Broadmoor Hotel in downtown Colorado Springs. This would be his twenty-fifth admission to Pueblo.
This time, the doctors gave him three different neuroleptic drugs, Thorazine every two hours and two atypical neuroleptics, clozapine and Zyprexa, twice daily. Once a day he was also given Neurontin, an anti-seizure drug sometimes prescribed for alcoholism. Nothing seemed to work. In April, two female patients on the ward said he grabbed and kissed them. In June, he was spotted purposely throwing up his medications in the bathroom. Over the summer, he lunged at a hospital staff member, pounded on the walls, and called other patients “pussy,” “bastard,” and “asshole.” To one staffer, he said, “Don’t you come near me with your medication, you bitch”; to another, he said, “I am going to kill you.” Peter grabbed the phone receiver while fellow patients were on a call and hung up, turned off the TV while others were watching, flooded the bathroom. And he began preaching to everyone around him. “I am Moses. You will burn in hell. Take your clothes off. You are all lepers. You’re dead. I will take a bat to your head. Shut up, or I will fuck you up.” More than once, he received the ultimate disciplinary measure at the time: seclusion and restraints. By August, Peter’s regimen had expanded to include eight different drugs: Geodon, Risperidone, Neurontin, Risperdal Consta (an injectable drug), Zyprexa, Prolixin, Trileptal, and Thorazine. That, too, didn’t work.
And so, on September 14, for the very first time, after the doctors acquired the proper court order, Peter started a course of ECT—better known as shock therapy.
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NO PROCEDURE FROM the dark ages of mental illness treatments has experienced as unlikely a cultural rehabilitation as electroconvulsive therapy, or ECT. The use of electricity to induce a seizure and calm the brain had been a cultural shorthand for medical torture for decades—since, perhaps, Ken Kesey made it the climactic stroke of barbarism inflicted on McMurphy in One Flew Over the Cuckoo’s Nest. By the time Peter first had the treatment, however, a fine-tuned version of the same technique was being described as effective, safe, and even relatively painless. ECT’s ability to nip mania in the bud with bipolar patients is so well documented that it was a matter of time, perhaps, before Peter became a prime candidate.
Everything about this new, improved ECT seemed designed to counter all that had been said about it decades earlier. Patients are sedated when receiving the shocks. They’re given a muscle relaxant to reduce anxiety, and everything happens while they’re asleep. The procedure still is known to have adverse effects on patients’ memories, particularly after many treatments. And yet in some cases ECT seems to be able to adjust serotonin and dopamine levels more effectively than any medication. There are many stories now of accomplished, talented people—Vladimir Horowitz, Senator Thomas Eagleton, Thelonious Monk, Carrie Fisher, and Dick Cavett among them—using ECT to right themselves, usually with just a few treatments or even just one.