By revisiting the huge, long-abandoned New Jersey mental hospital
where radical songwriter and performer Woody Guthrie struggled for five years
with the symptoms of Huntington’s disease, photographer and author Phillip
Buehler provides us with a valuable new perspective on the crisis in care for
people disabled by neurological disorders.
In Woody Guthrie’s Wardy Forty: Greystone Park State Hospital
Revisited (Woody Guthrie Publications, Inc., 2013, 162 pages), Buehler, a
specialist on derelict buildings, captures the rooms, corridors, and grounds of
the psychiatric facility that housed Guthrie between 1956 and 1961. It had over
6,000 patients and had some 2,000 employees at its height in the 1960s.
A companion volume, Woody
Guthrie’s Wardy Forty: The Interviews, provides background from those who
knew Guthrie or are involved in the campaign against Huntington’s. (
Click here to purchase the books.)
Woody Guthrie (above) and the new books about his time at Greystone Park State Hospital (below) (photos from www.woodyguthrie.org)
Utterly debilitated and unable to speak, Woodrow Wilson Guthrie,
the composer of “This Land is Your Land,” died of Huntington’s at Creedmoor State
Hospital in Queens, NY, in October 1967 at the age of 55.
Today the United States has an estimated 5.4 million Alzheimer’s
disease patients, and an additional 14.9 million family members and friends
cope with the disease as caregivers or in other ways. About one million people
suffer from Parkinson’s disease.
Huntington’s disease (HD) patients number 30,000, with an
additional 150,000-250,000 at risk. The government classified HD as an
“orphan,” or rare, disease because of the relatively small number of people
affected (fewer than 200,000). Numerous other disorders have similar symptoms.
By mid-century, as many as 120 million people worldwide will suffer from
dementia.
The world must shoulder a massive caregiving burden. Most people
affected by such illnesses will require care ranging from in-home assistance to
admission to a nursing home.
While researchers have made strides studying the symptoms,
causes, and treatment of these conditions, caregiving has not advanced.
Professional caregivers typically earn very low wages and receive little
training. Even many doctors cannot properly diagnose rare disorders such as HD.
“Long term care remains a scandal in the United States,” Alice
Wexler, Ph.D., a board member of the HD-related
Hereditary Disease Foundation
and author of two books on the disease, writes in a brief history of the
disease included in Buehler’s book. “Persons living with HD and their loved
ones – and all those with chronic neurodegenerative and psychiatric illnesses –
still struggle mightily to find appropriate and affordable support and care, at
home while they are still able, in facilities when they are not.”
In a case that
shocked the HD community, in May 2013 a 49-year-old, late-stage HD patient was allegedly strangled in an Oregon nursing home by another patient whom police described as
suffering from “severe dementia.”
To complicate matters further, the
Genetic Information Nondiscrimination Act does not provide protection to people seeking life, disability, and long-term care insurance. Thus, as genetic testing, including
full DNA sequencing, promises to become ubiquitous, people run the risk of not getting the coverage they will most need as they live ever longer lives. Only
three states (California, Oregon, and Vermont) prohibit this type of
discrimination.
Lives instantly
transformed
My own family has struggled with Huntington’s disease since the
late 1980s, when my mother Carol Serbin started having strange swings in mood.
A few years later, she developed chorea, the involuntary movements most
Huntington’s sufferers develop, causing some to appear as if they are dancing.
Nobody in the family understood what was wrong until in 1995 a
neurologist suspected Huntington’s. Just two years before, researchers had
concluded a two-decade quest to find the disease-causing gene, which they
called “huntingtin,” like the
disease named for the American physician George Huntington.
In 1872, Dr. Huntington published an article describing HD’s
symptoms and definitively establishing it as a genetically transmitted
condition. Everybody has this gene, which is essential for life, but when it
expands beyond its normal size, it causes brain cells to die. The discovery of
the gene allowed for a definitive test for the disease, though, unfortunately,
science has yet to provide effective treatments, much less a cure.
Receiving the news of my mother’s diagnosis the day after
Christmas 1995, my wife Regina and I saw our lives transformed before us in an
instant. With no treatment or cure, HD was fatal. All children of an affected
parent had a 50-50 of inheriting the condition. Most people experience disease
onset between the ages of 30 and 50, and everybody with a certain degree
of gene expansion or greater will develop the condition.
My mother’s diagnosis and the fear that I might carry the genetic
expansion compelled me to fight back in any way I could. Regina and I
immediately started attending the local support group of the Huntington’s
Disease Society of America (HDSA), and I became an HDSA advocate.
I began writing about my experiences in this blog. Because of
fear of genetic discrimination, until recently, I performed all of this behind
the scenes, for example writing under a pseudonym, Gene Veritas.
The fear that I carried the mutation led Regina and me to
postpone starting a family. By 1999, however, we agreed to try. First, I decided
to get tested. I was especially worried about transmitting the mutation,
because sometimes men pass on an even longer expansion, resulting in an
early-onset form known as juvenile Huntington’s.
Our worst fears were confirmed: I had the same expansion as my
mother and would likely develop the disease in my forties or fifties.
We then embarked on the most difficult decision of our lives: the
testing of our daughter in the womb (so-called preimplantation genetic
diagnosis was not yet available). After weeks of waiting for the results, we
received the happiest news of our lives: our “miracle baby” was HD-free! Today Bianca is a thriving middle school
student.
The genetic mirror
Throughout this period, I juggled my roles as college professor,
father and husband, and Huntington’s disease advocate – all while watching my
mother’s inexorable decline. In addition to her psychiatric symptoms and
chorea, she suffered from the third manifestation of the HD triad: cognitive
loss and dementia.
“Each encounter with my mom became a
view into a nightmarish genetic mirror,” I wrote to a physician friend who
included my story anonymously in a September 2005 Washington Post
article on HD. “I watched her body jerk, head bob, and fingers fret. One night
I found her wandering around our house confused and half naked. Within a year
she lost most of her capacity to speak. She ate clumsily with her hands.”
Around that time, because my “HD warrior” and caregiver father Paul could no longer care for my
mother at home, he placed her in a nursing home. She died quietly in her sleep
in February 2006, at 68.
Paul and Carol Serbin (photo by Gene Veritas)
Finally
seeing the beauty
Following Guthrie through the pages of Buehler’s books, I was
prompted to reflect on my relationship with my mother as she struggled with HD
as well as on how our system of caregiving must improve.
Disease
communities are used to emphasizing the devastation of the their particular
conditions. The devastation is real. But there is more to the person than the
illness. I regret not having the emotional strength and presence of mind to
have seen my mother more as a person and less as a mind and body racked by the
symptoms of Huntingon’s. Because I had tested positive for the mutation, often “my
fear of HD kept me from sitting down with her and attempting to converse,” I once wrote.
In
the “Foreword” to The Interviews,
Guthrie’s daughter Nora recalls her own hesitancy as a
15-year-old to reach out to her father and how she ultimately learned to
appreciate the man who, despite HD, understood his daughter’s
feelings, a man who possessed “twinkling eyes and a mischievous grin, releasing us all
to live our own lives completely and wonderfully, taking each day and each
situation as it comes.” Her father “lived with this disease, but he never became Huntington’s
disease.”
“As I turn these pages, I can finally see a beauty that
has taken me over fifty years to recognize,” Nora writes of Buehler’s
photographs of the hospital where she, her mother Marjorie, and brothers Arlo
and Joady visited Guthrie on the weekends and held picnics on the lawn, the
children often playing in a large tree their father dubbed the “magicky
tree.” “These
images are merely ruins, the gross leftovers, the little pieces, chipped and
peeling fragments of a life felt and lived so vividly and boldly.”
Discrimination
and misdiagnosis
The
Guthries’
story became my family’s
story, too. I remembered how I had travelled from my home in San Diego to visit
my mother in the nursing home in suburban Cleveland shortly before she died.
She shared a room with a woman paralyzed from the neck down. The attendants
tried to feed my mother but didn’t give her much more than a few spoonfuls before
quitting. Always patient, my father had done a better job of feeding her when
she was still at home. He would feed her once a day at the nursing home, too.
Still, she was losing energy, slowly slipping towards death.
As
the books recount, Guthrie faced the kind of discrimination still faced by HD
people today: police officers and member of the general public often believe
that HD people are drunk. In 1956, Guthrie was picked up by New Jersey state
troopers, who thought he was a vagrant. Only after a phone call from a friend
did the troopers comprehend that he needed medical attention.
At
first, the medical personnel at Greystone refused to believe Guthrie’s
claims to have written thousands of songs. Instead, they described him as “delusional” and diagnosed him as a
paranoid schizophrenic. HD is frequently misdiagnosed, in part because many
doctors have little or no knowledge of the disease.
“Paranoid schizophrenia was a very common misdiagnosis – as were others including
Parkinson’s disease, Alzheimer’s, all kinds of psychiatric
illnesses and people were just locked away,” says Dr. Michael Hayden, a
world-renowned HD expert and leader in the quest for treatments, in an
interview with Buehler.
It
took years to discover the cause of my mother’s
difficulties. She, too, had received different diagnoses, and some of her doctors
seemed indifferent or unwilling to get her to the right specialist. At first
she was put on Haldol, an anti-psychotic also used to try to control chorea in
HD. I quickly learned, however, that neurologists who understood HD avoided Haldol because of negative side effects,
so we got her off of it as quickly as possible.
A difficult environment
The
first two images in Buehler’s work are Guthrie’s Greystone intake photographs, which Buehler found in
the basement of the admissions building, shown on the next page in a recent
shot by the author. Later we come across Guthrie’s bed in Ward 18 of the
clinic building.
Images of Greystone Park State Hospital and a letter written there by Woody Guthrie (photos from www.woodyguthrie.org)
“I remember one time walking through the entire ward with
beds lined on both sides to get to my father’s bed at the very end,” Nora recalls in the
accompanying text. “The walk seemed to take forever. All around us were
strange people yelling, talking to themselves, uninhibited or somber.”
I’ve
learned that most HD patients are mixed in with individuals with other
conditions in facilities where personnel have little, if any, knowledge of HD.
HD family members must often educate health personnel about the disease.
Perhaps my mother would have lived longer had there been a nursing home with
appropriate enrichment activities for her condition.
Guthrie
lived most of the time in Ward 40, which, with his typical mirth, he nicknamed “Wardy
Forty,” as in the 1956 letter that appears in the book. Although
HD by this time had robbed Guthrie of his ability to play guitar, he continued
to write frequently, although ever less legibly.
My
mother was always in charge of balancing the family checkbook and writing
Christmas cards. For a while after HD struck, she continued these activities.
She used a ruler to make perfectly straight lines on which to write addresses.
She eventually lost the ability to write.
A caregiver’s
dedication
In a
1956 play titled “My Forsaken Bibel [sic],” written at Greystone,
Guthrie responds to a friend’s question about how he inherited HD from his mother: “Hit
my mother Nora Belle when she was about 40. Made her just go into such violent
fits and such violent kinds of spasms that, well, she just wreckd [sic] and
just wracked every single house we did live in. My cardiographer over yonder in
Brooklyn just told me my mother’s chorea sorta passled [sic] on to me here.” Nora
Belle died in an Oklahoma mental hospital in 1929.
My
mother loved to sew. I remember the Halloween costumes and other clothing she
made for me. One day she just stopped. She left scores of patterns unused. Like
Guthrie, I love writing. I have already passed my mother’s age
of onset. How much longer before HD erodes my ability to express myself? Will I
need to go into a nursing home? Will a treatment be found?
Marjorie
loved and cared for Guthrie despite the fact that they had separated about a
decade earlier because of strains over
the disease. They eventually divorced. Near the end of Wardy Forty,
Buehler places photographs of the couple at her Queens home, where she would
take her husband for visits.
“She stripped him of his clothes and scrubbed him in the
bath, sprinkling him with talcum powder and singing, 'Doesn’t he smell sweet now!'” Nora recalls in the
accompanying text. “She would wash and iron his clothes, sew up the tears,
and dress him like a mother dressing her child for a first day of school.”
Once
my father, daughter, and I went with my mother to a park. My mother needed to
use the rest room. We had to lift her from her wheelchair and maneuver her
clumsy and unresponsive body into the stall. It was like moving dead weight.
She nearly fell. When she was finished, we had to repeat the process in
reverse. Later, in her final months of life in the nursing home, my father
visited her every day. Dejected by her death, his own dementia worsened
dramatically. A year after she died, he started taking a large, beautiful,
framed picture of her wherever he went, including restaurants. In 2009 he, too,
died in a nursing home
Time to stop ‘throwing
away’ people
The
final two images of Buehler’s book are of Guthrie’s Greystone discharge
photos from April 1961, which contrast with the 1956 frontal intake photo.
Initially, Guthrie looks into the camera. His expression is sad, but he appears
relatively healthy. Upon discharge, however, he casts his eyes downward,
typical of the difficulty HD-affected individuals have with visual focus. He
appears to have lost much weight.
Arlo
was 19 when his father died. That same year, he released the song “Alice’s
Restaurant,” a protest of the Vietnam War draft. In 1969 he starred
in the Hollywood movie based on the song and performed at the Woodstock
Festival. Arlo himself never tested for HD and has not shown symptoms.
In Wardy Forty, Arlo
has a strong message about Greystone and its residents: “These
places were built so that they wouldn’t be a burden on society. You could throw away your odd
child, put him in one of these towns, almost like sending people to Australia
from England years ago. Penal colonies. And so it’s no wonder why they ended
up in this sort of notoriously bad scene. They were set up from the very
beginning to be away from the world, and not be part of it. Greystone is a real
monument to that.”
The
idea behind Greystone still largely governs our outlook on care for the
neurologically disabled.
People
across the country are acting to correct the situation. Maria Shriver and
former Supreme Court Justice Sandra Day O’Connor
– both lost loved ones to Alzheimer’s – have warned the public of
the Alzheimer’s “tsunami” about to hit America.
In
Vermont, HD activists successfully advocated for state laws preventing
inappropriate transfers of nursing facility residents and requiring public
assistance for home-based and community-based care. At the national level, HDSA is pressuring Congress and the Social Security Administration to update long-outdated and inaccurate disability criteria for HD and to waive the two-year waiting period for patients to
receive Medicare benefits.
Responding to press
reports of corruption and abuses and requests from advocates, California state legislators in January announced twelve bills aimed at addressing the
inadequate care in the state’s assisted living facilities and nursing homes.
Indeed, the time
has come to develop a more compassionate society by valuing both the person
cared for and the caregiver.
