Refusing Medication, Alcohol, Trauma, Defying Authority?
Or All of The Above
David Hilton lived his life in repeating, almost identical, two-year relapse cycles, each relapse longer, more dangerous, and damaging to him than the one before. I held David Hilton’s hand through his last three. Others, who knew him longer, say previous patterns were the same.
- He’d get released from the state psychiatric hospital, stable on medication, with a court order to take his medication.
- He stopped his meds abruptly, as soon as he reached the hospital parking lot, went home, and had a few beers.
- He would stay stable and productive for several months.
- He would dabble in some home cure that promised to keep him well without medication: Christian Science, Scientology, Recovery Inc, RD Laing, vitamins, nutrients, and nutrition supplements. He quickly lost interest in them.
- His slide toward re-admission to the hospital started subtly, with no visible early warning signs.
- By the time early warning signs showed – smoking cigarettes, abnormal (for him) irritability and impatience, typing at super-speed, bullying people, ignoring people and tasks at hand to work obsessively on unrealistic ideas – it was already too late to prevent hospitalization.
- If you said you saw early warning signs, he denied any problem, and got furious. He’d make false claims about being discriminated against by everyone because he had a mental illness.
- He would do something dangerous, and be taken back to the hospital by police. On one Involuntary Emergency Admission (IEA), he struck a female hospital staffer. Before another, he wrapped his friends’ car around a tree and walked away. Police said they could not see how anybody survived.
- Each hospital stay included several weeks insisting on his right to refuse medication. With each conditional discharge, the court tightened the conditions. He always broke his leash, and started the cycle again.
David Hilton’s Passion and Mystery
David Hilton was passionately anti-medication. His position was more extreme than the national movement leaders he most admired, who say you should take medicine if it helps you, but it should be presented as one of many options, with full disclosure of risks.
Medication was only a civil rights issue to him – “they can’t make me” – never a personal health issue.
He simply refused to take care of himself despite years of experience that showed self-care allowed him to do what he wanted, and lack of self-care made him a prisoner again.
None of David Hilton’s friends knew why he kept reliving forced treatment and confinement, and his explanations made no sense. Maybe it was part of the illness, some people said.
It was especially hard for me to understand. David Hilton and I had the same diagnosis and took the same medicine. Mine had stopped my crippling mood swings and enabled me to pull my weight at a daily newspaper for years. David Hilton was brilliant, creative, and effective until he started to slide back toward the hospital.
I would never stop my meds when it might mean losing my work and passion, and letting down my readers, co-workers, and employers.
There was no “maybe” about what would happen when David Hilton stopped his meds. He kept repeating the same script, with the same outcome, each time.
It made even less sense to me because David Hilton was smarter than I was, and neither of us had visible side-effects. He once told me he was 15 pounds heavier at 48 than when he was a star athlete in high school, and he sometimes lost concentration in two-hour meetings. Who isn’t, and who doesn’t, I thought.
Trauma and Rage
Most or all of our problems came from previous traumas, and anger. Mine had happened long ago and far away. I was learning, thanks to a breakthrough in therapy, to stop playing the angry victim game after 30 years. I was becoming a happier person.
David Hilton’s trauma happened in his late teens and 20′s when he did “hard time” in the big state psychiatric hospital, where he was forcibly treated and confined.
When the old campus de-institutionalized, they made it a state office complex. David Hilton’s office was in the Main Building of the old hospital, where he was traumatized. His office was two floors above the sub-basement where they still have dungeon cells where they locked out-of-control patients, sometimes in strait jackets or chained to the walls.
And his work every day involved protecting consumer rights, expanding opportunities for recovery and empowerment, contending against the next generation of “keepers,” who kept people dependent on 10 small institutions instead of one big one.
Just being there every day must have been triggered and re-traumatized David Hilton constantly.
David Hilton’s Establishment Enemies
David Hilton’s Establishment “enemies,” as he called them, in the state mental health bureaucracy, allowed him to spend four months of every 24 in the hospital for refusing to take care of himself, for 13 years without penalty. They paid his hospital bills and covered for him in the office. Activists like me held the consumer movement together when he was gone.
Then, the NH Bureau of Behavioral Health got a new director who was a consumer himself. He thought people with mental illness, who wanted meaningful lives, had a responsibility to take care of themselves, and show up for work like everybody else. David Hilton had the ability and responsibility to prevent these extended absences, the director reasoned, and he demoted David Hilton from OCA director to researcher.
Losing the job he created 13 years before, that had been copied in 41 states, shortened David Hilton’s life. Director of Consumer Affairs was who he was, not just what he did.
A Horrible Good-Bye to David Hilton
Our last e-mail exchange before he died still haunts me. I said things I would not have said if I’d known we’d never speak again.
David Hilton accused me of “collaborating with the enemy.” He called me a traitor, selling out consumers for money, and resurrected some old accusations he knew were false, that he only mentioned when he was dangerously unstable, a week or two from going back to the hospital.
In-your-face bullying also indicated he already on the steep slope back to the hospital, and there was nothing anyone could do to slow it down.
Shouting e-mails from David Hilton happened often to everyone in the consumer leadership. It was part of the fun of consumer leadership. They were always forgiven and forgotten, always interesting even when he was wrong.
But “collaborator, traitor and selling out for money” were personal, over the top, and completely unfair. Nobody bullies me.
I fired back a factual answer to the charges, then said, “While I was collaborating with the enemy for free all these years, who was paying your salary and hospital bills? Does that make you a collaborator too?”
It was meant to be a low blow. David Hilton never made peace with working for gradual change in a system he really wanted to tear down and replace with something totally different. I knew that and said it anyway.
Then David Hilton sent his e-mail bomb about me to the entire consumer leadership. Long ago, the movement agreed never to attack each other in mass e-mails. He was breaking that agreement. I had no choice but to send a copy of my e-mail bomb to everyone who received his.
He folded when I stood up to him. His muffled answer to everybody said. “I’m just concerned with the direction of the leadership.”
A week later, David Hilton went to Washington State, and had a screaming argument with his daughter. He stood in front of a train.
I learned David Hilton had started screaming arguments with all his best friends in the last month. He had told a friend days before he died that he’d been off his meds for some time. And the coroner’s report showed a dangerously high blood alcohol level.
How alone he must have felt when he died, but there were hundreds of people all over the country, including me, who would have been honored to get a call from David Hilton when he needed someone to talk to.
I’d lost my best friend and mentor. I was shocked, grief-stricken, and furious at him. He was not quite 50. People all over the country loved, admired, and respected him. He should be alive, leading and teaching our movement. All he had to do was take care of himself.
A few people tried to console me by saying David Hilton gave his life to uphold his principles. That’s nonsense, I thought. He died to prove nobody could make him stop drinking and continue to lead.
I’ll never know if David Hilton ever considered tapering off gradually, under supervision, He knew people who had done it. It’s doubtful his docs ever presented it to him, or that the probate court would have allowed it given his history. He never stayed on his meds long enough to complete an outpatient commitment and become a completely free agent.
Could I have helped more, hurt him less, prolonged his life somehow? All he had to do was take care of himself.
What motivates you to take care of yourself, and keep going, when you lose hope temporarily, or feel completely alone?
I’ve learned those feelings go away by themselves if I live long enough, if I just keep postponing and fighting off the suicide attempt until they do.