Mental Health Association in New York State, Inc.
(Publication Archives)

Friday Fax from Albany

MHANYS Holds Conference, Annual Awards Dinner

Conference Dates:
Evening of October 20th and all day on October 21st

Location:
The Albany Marriott
189 Wolf Road
Albany, NY
(518) 458-8444

Target Audience:
Members of Mental Health Associations throughout New York State, other stakeholders in the mental health community and state and legislative policy makers.

Registration:
Fill out the Conference Brochure and mail it back to the MHANYS office. Any questions, please contact Lillian Lasher at (518) 434—0439, ext. 22 or at llasher@mhanys.org.

Prices:
All prices are listed on the Conference Brochure.

Scholarships:
Limited availabilty. Please contact Lillian Lasher for more details

Highlights:
Though spelled out in greater detail in the Conference Brochure, the conference highlights include:

MHANYS Annual Awards Dinner

MHANYS is pleased to announce this year’s award winners who will be honored at our dinner on October 20th.

CEO Award:
John Allen, Director, Bureau of Recipient Affairs, New York State Office of Mental Health

Parent Advocate of the Year:
Kathy Fadden (MHA Franklin)

Media, Print:
Mindworks tabloid inserted in Kingston Daily Freeman
Gregory Arpel, Advertising Director

Media, Electronic:
WICZ Fox 40 in Binghamton for Timothy’s Law PSA
John Leet, General Manager
Sean Kimber, Production Assistant

Volunteer of the Year, Community Service:
Alexandra Zimmerman, Ann Berardinelli and Jane Desrats for the Walk for Mental Health

Volunteer of the Year, Programs:
Leonard Wawrzyniak
The Place to be Social Club (Genesee County MHA)

Esther Mallach Staff Leadership Award:
Casey Epe, Executive Director, MHA of the Southern Tier

Ken Steele Memorial Award for Program Excellence:
Teen Challenge Clubhouse (MHA Dutchess)

By the Numbers:
Ten Reasons Why You Want to Attend this Conference

1. Here the fascinating and moving story of the Spiro Sisters as told in their book Divided Minds (please note copies of the book will be available at the conference).
2. Free Special Screening of Out of the Shadow with award winning filmmaker Susan Smiley.
3. National and state experts discussing the implications of Medicare Part D for individuals who are dual eligible and have a psychiatric disability.
4. Panel on the experiences of the first seven counties who have begun implementation of PROS.
5. Panel discussion on the implications for youth with psychiatric disabilities in the juvenile justice system.
6. Celebrate the great work of the MHA’s throughout the state and our colleague in the community at our awards dinner.
7. Great opportunity to network with other MHA’s, colleagues in the mental health community and policy makers who have a shared vision of recovery.
8. Prime leaf viewing season. Albany and the surrounding areas will be at their peak leaf viewing.
9. Warm and friendly atmosphere with nice accommodations.
10. Prices are very reasonable for dinner on the 20th and breakfast and lunch on the 21st.

One twin struggled with a secret illness, and the other became a doctor. Together they’ve grown

Inseparable

by Kenneth Miller

Reprinted from: Reader’s Digest, October 2005

When John F. Kennedy was shot in November 1963, Carolyn Spiro responded just as many other 11-year-olds did: She wondered why her sixth-grade teacher seemed so shattered, why the principal had such trouble speaking on the PA, and whether school would let out early.

Down the hall, her twin sister, Pamela, was seized with panic—and an awful, irrational certainty that somehow she had murdered the President. It began as a voice whispering her name, followed by a volley of coded accusations. "Thrills will kill, Pam Spampamamaman," the tormentors in her head hissed. "Public republic enemy numero uno you know who know."

Pam had never heard the voices before, but she knew for certain that what they said was true. The gunman in Dallas was only a triggerman. In some way she could not yet grasp, the real locus of evil was a little girl in North Haven, Connecticut. She prayed that God would turn back time and kill her instead. As her schoolmates lined up for their buses, she stood sobbing uncontrollably. At home, the infernal chorus quieted, but the reprieve was temporary. The demons in Pam’s mind had come to stay.

Mental illness doesn’t affect only the mentally ill; a patient’s waking nightmares shadow the lives of her loved ones as well. This may be especially true of identical twins, who tend to share an almost telepathic emotional bond. Perhaps not by chance, Carolyn Spiro grew up to be a psychiatrist. Pam, despite numerous hospitalizations and suicide attempts, became an award-winning poet. And in their new joint memoir, Divided Minds: Twin Sisters and Their Journey Through Schizophrenia, they offer a moving journal of survival and mutual salvation.

At 52, they no longer look alike. But they still finish each other’s sentences, although Carolyn speaks in an enthusiastic rush and Pam drawls, her tongue slowed by the meds. They still sometimes seem to read each other’s minds. “Slinkies!” Carolyn declares as the women share memories of their childhood dislikes. “When they would crawl down the stairs?”

“Horrible,” answers Pam, laughing.

And each still considers the other the most important person in her life. “What effect has she had on me?” Carolyn asks later. “What effect hasn’t she had?”

“If anything happened to Lynnie,” Pam says, “I don’t think I could go on.”

Pam and Carolyn are the eldest of four, but they have always been something of a world unto themselves. In the beginning, Pam was the dominant twin, and she remained so for years, even after she first fell ill. Slightly taller and significantly smarter, at least by Carolyn’s reckoning, Pam was a brilliant student, a talented artist and musician, a champion swimmer and – both felt – their father’s favorite. Carolyn cherished their closeness, but her love mingled with insecurity and resentment. “There was no room for me, “ she says. “Why take the inferior copy when you can have the original?” Pam told no one about the voices, and continued to shine academically even as she steadily grew more withdrawn.

At 17, both girls headed off to Brown University. There, Pam began to fall apart. She suspected her roommates were trying to poison her. In the dorm, she hid behind the common-room curtains as she studied, to shield herself from conspirators. Her thoughts became a tangle of involuntary wordplay and what seemed like cryptic revelations: Standing by the Seekonk River, she realized that she was a seeker on a mission for the Holy See and that she would get C’s in all her classes; she must travel the seven seas and seize the day, for tomorrow we konk out. She stopped bathing, and the voices slowly shut out most of the world. She longed to escape.

Carolyn thought her sister seemed depressed, and checked in on her frequently. One night in January 1971, she arrived just as Pam swallowed a bottle of sleeping pills. Carolyn walked her across the freezing campus to the infirmary, where a nurse administered a lifesaving emetic. Yet Pam still guarded her secret closely, even after her mother checked her into a hospital in New Haven. During her five-month stay, the doctors never guessed the real reason for her breakdown, diagnosing her instead with depression.

Pam returned to Brown and graduated magna cum laude in 1975. By then, however, the family hierarchy had shifted. As Pam stumbled, Carolyn had found her footing. She’d applied and been accepted to Harvard Medical School. The twins’ father, a prominent physician, was bitterly disappointed by what he saw as Pam’s malingering. Carolyn felt guilty about usurping her sister’s position but was still competitive. The tension between them grew, and the twins avoided seeing each other, staying in touch only by phone,

In 1977, Pam headed for med school herself at the University of Connecticut. But when the voices began demanding that she cut herself with razors, she could not resist. She also began suffering from narcolepsy (an unrelated disorder), which worsened her problems. Early in her second year, she ran weeping to the med school dean and begged him to release her from the program. Then she walked to the psych ward at University Hospital. Her medical career was over, but her career as a patient was just beginning.

The definition of schizophrenia has remained more or less the same since 1950. The illness is distinguished by a constellation of persistent symptoms including hallucinations, delusions, disorganized speech and thinking, and a reduction in the desire for social interaction. The incidence of the disease has held steady for decades, at just about 1 percent of the world’s population. So has the rate of what psychiatrists call “successful outcome,” at about 30 percent of patients. That doesn’t mean they’ll be symptom-free,” says neuropsychologist Michael Foster Green, author of Schizophrenia Revealed: From Neurons to Social Interactions, “but they can have a family, hold a part-time job.”

In the last few years, however, the scientific view of schizophrenia’s cause has changed radically. Today, it’s clear that heredity plays a crucial role. Whether an individual actually falls ill, though, also seems to depend on environmental factors. Schizophrenia rates are higher, for example, among individuals born to mothers who caught the flue during their second trimester of pregnancy, or suffered from malnutrition during their first.

Other risk factors may exist, such as head injuries, or emotional trauma. Many schizophrenic patients show signs of abnormal neurological development –high-steepled palates, oddly shaped ears. They often do poorly on certain tests of memory or perception, even when talking medication. These cognitive deficits seem to result from poor communication among neurons—and may be more fundamental to the disease than hallucinations or paranoia.

When Pam was first diagnosed, in the early 1980’s, some psychiatrists still blamed schizophrenia on bad parenting. “Schizophrenogenic mothers” drove children crazy; overly emotional fathers were suspect too. As if the bizarre behavior caused by the disease weren’t enough, such notions further alienated many parents from their kids. Family members were discouraged from involvement in treatment; that was best left to professionals, who tried to resocialize their subjects using positive and negative reinforcements.

Carolyn was one of those professionals. In medical school, she had discovered a passion for psychiatry. She insists it had nothing to do with Pam—“I had no idea at the time how sick she was.” She was a psychiatric resident at a hospital in Boston when she got a call one night from a familiar facility in Norwich, Connecticut. “Your sister is very ill,” said the nurse.

The next morning, Carolyn set out for Norwich, where the nurse revealed the secret Pam had kept for 18 years. “She hears voices in her head,” she told Carolyn. “We think your sister has schizophrenia.” Carolyn’s first reaction was angry denial: Schizophrenia happens to other people. But when she reached Pam’s room, the evidence was unmistakable. Pam stood still as a statue, seemingly unaware of her visitor’s presence. Her limbs were scarred from self-inflicted cuts and burns, and one hand was raised as if she was reaching for something. “I went up and moved her arm, and it stayed there,” Carolyn recalls, her eyes brimming with tears. “I knew what that was.”

Pam’s condition was a rare subset of schizophrenia known as catatonia, in which patients’ mental processes slow to the freezing point. Carolyn was horrified, and despite her training—but in part because of it—she felt utterly lost. “I’m thinking, I really should butt out and leave her treatment to her psychiatrist. But Pammy’s turning to me. What do I do?”
It took Carolyn years to overcome her professional misgivings and old feelings of rivalry and work out a solution. At first, she simply offered Pam sisterly support, phoning her several times a week and acting as ambassador to the rest of the family. After she learned that Pam was living in squalor, in a tenement apartment full of garbage, she began to buy her groceries and clothes. Finally in 1996, she found the courage to intervene in her treatment.

The turning point came when a therapist called Carolyn to say Pam seemed to be “terminal”; she was contemplating suicide again, and this time, the therapist feared, it might be impossible to stop her. The voices weren’t to blame, the therapist told Carolyn. They had been silenced, at least temporarily, by a new medication called Zyprexa, which brought Pam a mental clarity she hadn’t experienced in decades. But the drug caused severe weight gain, which battered her already fragile self esteem. And her beloved former therapist had gone on family leave. She felt unbearably lonely, cut off from the world.

After the phone call, Carolyn shared her worries with her support group for women therapists. “Haven’t they tried antidepressants?” her friend and fellow psychiatrist Siobhan (not her real name) asked. Although diagnostic dogma then held that schizophrenics wouldn’t benefit from such drugs, Siobhan believed otherwise. She offered to take over Pam’s case.

Carolyn sent Pam to Siobhan, who started her on antidepressants, and her condition improved markedly. Since then, Carolyn has helped her sister through dozens of crises, including a string of hospitalizations triggered when the side effects drove Pam to stop taking her antipsychotics. But the succor hasn’t been entirely one-sided. Pam has done some rescuing of her own.

“Writing keeps me alive, in every sense of the word,” says Pam, nestled in an overstuffed chair in her 12th-floor apartment, in a subsidized housing project an hour’s drive from Carolyn’s place. Beside her is a large laptop and an ashtray full of cigarette butts. Nearby is a well-stocked bookcase—Chekhov, Grimm’s fairy tales, Girl, Interrupted. “I feel like the whole poem flows through me and just writes itself. It’s an amazing thing.”

Pam found her lifeline in the mid- 1980’s. She had been shuttling in and out of local hospitals and was sharing an apartment with a poetry-loving insurance adjuster. One evening her roommate read aloud Gerard Manley Hopkins’s “Spring and Fall: To a Young Child.” Hearing the last lines (“It is the blight man was born for,/ It is Margaret you mourn for.”), opened onto a new country, one she was eager to explore.

She began to write every day that she was healthy enough to pick up a pen—between attempts to immolate or hang herself, and through a half-dozen medication changes. The pills sometimes made her foggy or frantic, but she pressed on. After a few years she began publishing in prestigious literary magazines and winning major contests, including the 2002 BBC World Service Poetry Competition. In the mid-90’s, she began working in earnest on a memoir of her illness that eventually led to Divided Minds.’’ Although Pam has never shaken the idea that she is fundamentally evil or that secret enemies are trying to control her thoughts (she still keeps her bedroom ceiling covered in tinfoil to ward off their “rays”), writing gives her a weapon against those dark obsessions. “To Forgive is .. to begin/and there is so much to forgive,” she writes in one poem. Perhaps her writing allows her to forgive herself. But it also is a gift to others, and it is not the only one she has to offer.

“Pammy can be hell on wheels,” says Carolyn, “yet by the end of a hospital stay, she’s got fellow patients coming up, saying, ‘Your sister did this for me,’ She’s noticed somebody’s art ability, listened to someone in a way that made them feel understood.” On one occasion, an elderly stroke victim kept struggling when nurses tried to make him urinate in a bedpan. “Pammy told them, ‘He needs his privacy,’” Carolyn recalls. “They took him to the bathroom, and he calmed down. She was the only person on the unit who was aware that this man still needed to be treated with respect.”

Caring for Pam has allowed Carolyn a greater insight into her own patients’ humanity. Her sister’s struggle against madness has inspired her to persevere when faced with adversity—most notably, during the end of her marriage five years ago, which left her a single mother to two teenagers. The three-year collaboration on their book, despite the sometimes furious arguments it provoked, brought the twins closer than they had been since girlhood. Says Carolyn, “We always have a good time together, when we’re not killing each other.”

On a Thursday morning, after Pam has slept over, Carolyn drives her to her weekly appointment with her psychiatrist. Pam seems focused and confident as she calls out directions, helping her sister navigate the suburban Connecticut streets. She’s pleased with her new regimen of about a dozen medications; besides an antipsychotic Geodon, there are pills to combat side effects, to stabilize her moods, and to help regulate her sleep.

Other things have made a difference as well. Over the past year, Pam and her father have reconciled; he now visits every couple of weeks. And then there’s the book. Her psychiatrist says her prognosis is “fabulous.”

Pam herself doesn’t like to talk about the future. “What’s happening now is what’s happening,”” she says. “That’s all that matters.” But lately, she has taken to cultivating tropical fruit trees in pots around her apartment. The kumquats and mangoes have sprouted after months of diligent watering, and now she’s planting lichees. “Nobody’s told me you can’t do it,” she says, “so why not try?”