Ray Duckler: Finding peace by fighting stigmas and accepting death
Dave Braiterman, right, helps his brother Ken into their van as the two leave Harris Hill Center on Friday night, November 1, 2013. Ken has been an advocate for mentally ill people for years, using his own experiences to help relate to others. Since being diagnosed with Lou Gehrig's Disease, Ken's brother has been assisting on a regular basis. He was recently presented the Riverbend Rainbow Lifetime Achievement award for his work as a mental health advocate.
(JOHN TULLY / Monitor staff)
Ken Braiterman, center, is greeted by Sarah Katz inside the Temple Beth Jacob on Friday evening, November 1, 2013 while being helped by his brother Dave. Braiterman has been an advocate for mentally ill people for years, using his own experiences to help relate to others. Diagnosed with Lou Gehrig's Disease, he now lives at the Harris Hill Center in Concord and is helped by his brother, Dave, on a regular basis. He was recently presented the Riverbend Rainbow Lifetime Achievement award for his work as a mental health advocate.
(JOHN TULLY / Monitor staff)
The other day, the director of the state’s National Alliance for the Mentally Ill mentioned Ken Braiterman and “courage” in the same sentence.
More information was needed.
Was NAMI’s Ken Norton referring to the longtime pioneer, the voice of those who are misunderstood by society, the man who has aided the police in their effort to understand people like himself?
Or was Norton talking about the man dying from Lou Gehrig’s disease, the man in a wheelchair whose limbs are limp but whose spirit and mind are very much alive?
Either example would have worked. In this instance, the first description was on Norton’s mind, the one about mental illness and the prejudices that come with it.
“He would stand up in these situations and talk about his struggles with mental illness,” Norton said, “and lay himself bare in front of people.”
Braiterman, an individual as complex and mysterious as the illness that will one day kill him, was honored recently by Riverbend Community Mental Health. The organization gave him its Rainbow Award, an appropriate name for a colorful character.
As Norton says, “You can read in the booklet his accomplishments, but that’s only part of it. The bigger part for me is Ken has an incredible mind. I don’t always agree with him, but he always makes me think, and he has an incredible heart and passion for people with mental illness.”
Long after Braiterman, 65, is gone, this will be his legacy, his contribution, the epitaph on his tombstone. It will read something like this: “A journalist and writer, quirky and blunt, who turned the mental health community upside down, then spit in the face of a cruel disease.”
His humor is intact, and his willingness to share views and personal stories remain just a question away.
Asked at the local nursing home where he lives how he’s handled his death sentence so well, Braiterman quotes civil rights activist Dick Gregory: “You got to die of something, because if you die of nothing, they won’t pay your insurance.”
Then he uses his own words, describing the relief he felt once he finally knew what was wrong: “This is the worst disease I could imagine, until I was diagnosed with it. I feel fine.”
He has lived at the Harris Hill Center nursing home for five months, since the disease made it impossible for him to live alone in his Concord apartment. Braiterman is in a wheelchair, his legs and right arm lifeless. He can move his left arm about six inches, but that will die soon, too.
His brother, Dave Braiterman, is a Concord lawyer, doubling now as Ken’s caretaker. They grew up in Baltimore, playing baseball and going to Orioles games together. Dave looked up to Ken, eight years his senior.
As adults, though, their relationship was icy at times.
“I thought Ken was self-centered,” Dave said. “He was more interested in himself than others. I didn’t fight with him because he was stubborn. He has a temper. He’s not mean, but he will say nasty things to you. He can push my buttons.”
Ken says his bitter streak comes from his past, and his past is the cause of the emotional instability that has followed him for years.
It’s vintage Ken Braiterman, because his views on mental illness have never followed a mainstream path.
They’ve evolved over time, since the days of the columns and editorials he wrote about mental illness three decades ago at the Lawrence Eagle-Tribune. His goal was to destigmatize the condition, something he’s done in New Hampshire by creating programs that encourage those who suffer from mental illness to speak up about it. He also favors peer interaction over medication.
He traces his background to explain his theory, that mental illness isn’t an illness at all, that it stems from severe trauma and can happen to anyone.
“I don’t think it’s an illness,” he said. “I think it’s people who have overwhelming emotional problems. I was diagnosed with bipolar, and I think that was a mistake. I think I had post-traumatic stress disorder.”
Leave it to Braiterman to diagnose himself, without any fancy lettering after his name to designate years of college.
Asked how he can be so sure about his theory, Braiterman said, “Because my symptoms are more like PTSD than bipolar. I know the same way a doctor knows. Mood swings, explosive temper, depression, with long periods of being okay in between.”
When told those symptoms describe bipolar disorder as well, Braiterman said, “I have specific triggers, like someone with PTSD, but it’s also true of bipolar.”
Confusing, yes, but Braiterman’s past plays out like a script with little clarity. He says the first of his two divorces had a lasting impact on his life, that the woman was mean and dumped him. He says his grandfather traumatized him through his criticism of a book Braiterman wrote about him, an incident that occurred 35 years ago but has remained with him since.
Dave says his brother should get over it. Ken says his grandfather “hated my book. He fired me.”
But Braiterman says that, more than anything else, his emotional problems took root 40 years ago, when he was a counselor at a Jewish camp in New York. He says he was called in by camp leaders to help create a new course, a better direction.
The story is vague and cryptic, but the message is clear: Camp leaders got what they needed from him, a new model for the camp, then dismissed him.
A recent camp reunion revealed that Braiterman’s fingerprints remained all over the camp, and that helped ease his mind. But the episode affected him for decades.
“They used me, abused me and dumped me,” Braiterman said. “They booted me out because they didn’t need me anymore. Abandoned by people who raised me in the Jewish traditions. A lonely, lonely feeling.”
What are we to make of this man? It’s easy to scoff at him, cast him aside, with his complaining and his odd stories.
Then you listen to Norton, the NAMI director, who nominated Braiterman for the group’s Rainbow Award.
You’re told how much Braiterman has done for the mental health community, that the personal experiences he’s been willing to share have meant so much to so many, that the programs he created and directed, like the Office of Consumer and Family Affairs, and In Our Own Voice, have taught mental illness sufferers to speak freely about their condition.
“Ken has pushed the envelope in New Hampshire,” Norton said. “He made people think about assumptions we have, that these are things to consider when treating people, and look beyond the medical model. He looks at the person, not the illness.”
Then you call Capt. Bob Stafford, a law enforcement training specialist for the state’s Police Standards and Training Academy, and you’re told that, perhaps, Braiterman has saved lives.
“He better educates officers to interact with the mentally ill,” Stafford said. “How can you not like and respect a man with what he’s done, not only for the police academy, but for the state of New Hampshire? He’s able to make these folks feel better about themselves. It’s a gift he’s given them.”
Braiterman still teaches police recruits, when his brother can load him into a van and drive him to the Concord headquarters.
Life has been hard, though, since Braiterman began falling in his apartment. He was diagnosed last year with a disease that destroys the nervous system and leads to muscle atrophy.
Braiterman crashed his car more than once because he couldn’t peer over his shoulder to look for traffic in blind spots. Grocery shopping and doing laundry were out of the question.
The illness has forced the brothers to ignore old feuds.
Dave has been given Ken’s financial and medical powers of attorney. He’s mowed through the mountains of paperwork to secure Medicaid, and prepaid for a funeral with an unknown date and a harsh element of inevitability.
“Now I need my brother terribly,” Ken said, “because there are so many things that need to be done.”
And now that he’s dying, Braiterman has one more surprise for us. Since his diagnosis, Dave says his brother, finally, feels that sense of peace, the one he couldn’t find for so long.
“This is shocking to me,” Dave said. “I expected him to go kicking and screaming, and to be mad at the doctor, and he wasn’t any of those things.
“I don’t know why he feels comfort in that knowledge, but he does.”