Mother’s Day

My younger brother Paul suffered from severe and treatment-resistant schizophrenia. He developed the illness at age 16, in 1976, and never really recovered. He was frequently delusional and paranoid, and sometimes threatened violence. But our mother never gave up on him, always believing that one day soon, a cure would be found. It was our job to keep him safe until then.

At the onset of Paul’s illness, psychologists still tossed around terms that blamed the mother in some way for the condition. The terms “smothering mothering” and the “schizophrenic mother” were bandied about in pseudo-scientific literature. At other times mental illness was often blamed on repressed homosexuality or an Oedipal complex – Freudian beliefs still popular in some circles. And in many people’s heads, it was linked to the sufferer’s own sinful ways or to some God-assigned stigma. Mother knew this was nonsense – or tried to believe it was nonsense, and carried on, determined to do her best for her son.

Paul’s care was often hampered by lack of funding and accessibility to good care. Because of the many false beliefs in the general population, insurance companies were permitted to set lower lifetime limits for expenditures on medical care for mental illness and higher co-pays – often 50%. This is how my parents reached the point that they could no longer afford to care for Paul themselves. After about 18 months, after mortgaging the house to the hilt to pay hospital and doctor bills, they were forced to sign him over to be a ward of the state, and he was committed to a state psychiatric hospital. But no sooner was Paul admitted, than hospitals began to close. Little by little, the less severely ill were released.

The nineteen seventies and eighties saw a public zeal to release all mental patients from mental hospitals. I had been living in Minnesota when Paul became ill, but in 1981, I moved back to New York State to be closer to my family after a divorce, and I began to become involved in his care. I found that New York had already begun to empty and close all the state mental hospitals. This wasn’t unique to New York; it was a national trend. Beginning as a trickle, the great emptying had become a torrent by the mid-1980s. The United States had 340 public psychiatric beds available per 100,000 people in 1955; by 2005 there were only 17 beds per 100,000. And hospitals still continue to close every year, across the country. Much of this shrinkage in capacity at psychiatric hospitals during these years was a result, direct or indirect, of the introduction in 1954 of chlorpromazine (Thorazine), the first effective antipsychotic, which made it possible, for the first time, to control the symptoms of schizophrenia and thus discharge some patients. Paul was on Thorazine and similar medications for many years.

By the mid-1980s, the doctors treating Paul were well aware that a neurological component was primary to the disease; it was not a behavioral issue. Doctors were also well aware that not everyone benefitted from the new medications; some still needed long term, supportive care. But despite the rapidly growing body of knowledge that pointed clearly to biological, neurological causes, old stereotypes persisted, and they took form in efforts to release all patients from mental hospitals.

During this time, well-intentioned do-gooders, as my father called them, had sued New York State to close down the huge state institutions, made infamous by investigative reporting on places like Willowbrook, on Long Island, where developmentally disabled people had been mistreated. This movement was intensified by an aspect of Medicaid: its reimbursement schedules were written to withhold payments to large mental institutions, accelerating the closures nationwide. New laws called for smaller, more humane, community-based residential facilities for patients needing long term care. One by one the old hospitals closed; a few homes were built for people with Downs Syndrome and the like, but no one wanted crazy people in their neighborhood. Almost no smaller facilities were built for people like Paul.

The shrinking population of those suffering from the most serious mental illnesses rattled around on a few floors of hulking, ancient hospitals, many of them built a hundred years before as sanitariums for people with TB. Paul’s hospital was one of them, with bars on the windows and double sets of locked doors. We felt bad for him, but we knew he would be unable to care for himself on his own. The former patients who were released often ended up in slumlord- operated single room occupancy buildings (SRO’s) and adult homes, where they were still confused and unable to care for themselves and now had no supervision. The streets of New York and other big cities suddenly were full of mentally ill homeless people wandering around, sleeping in doorways, dying of exposure or getting arrested. Eventually, our prisons filled with mentally ill people who, only twenty-five or thirty years before, would have been humanely cared for in an institution—people who by law should have been cared for in new, smaller, community care facilities.

Every time there was a story in the papers or on TV about one of them, Mother cringed. A mentally ill man pushes someone off a subway platform. A mentally ill homeless person wanders the streets of New York City pestering passers-by, is killed in a bar fight, is found frozen on the streets…

Mother would steel her mouth into a thin line. This will not happen to my son. I couldn’t stop him from going mad, but I can try to make his life as good as possible, within its limits. She volunteered at the hospital library. She stopped by the ward on non-visiting days. My son is not alone, her presence said. I am watching. She joined NAMI, the National Alliance on Mental Illness, a new organization which advocated for both patients and their families. Her focus at that time was always on making the remaining hospitals comfortable for Paul. We couldn’t imagine that he would ever be released.

Determined to keep her son safe, Mother stayed tuned in to public hearings and release meetings – sort of like parole hearings – at the hospital. She showed up for all of them, ready to insist that Paul stay hospitalized. “You can’t just release him. Transfer him to a nicer, smaller place, yes. But I can’t handle him. He’ll set fire to the house. He’ll get into bar fights. He’ll hurt someone,” she told anyone who would listen. She wrote letters to our Congressman and State Assemblyman.

Sunday after Sunday, Mother made the one-hour, forty-five mile, drive up Routes 684 and 22, from White Plains to Harlem Valley Psychiatric Center so often, she could recite every gas station, restaurant, fitness center, farm, antique shop, motel, bank, diner, lumber supply store, army surplus store, church, fast food joint, office park, bakery, school, ice cream stand, car dealership, nursery, and garden supply store along the two-lane state road. My house was about halfway between Paul’s hospital and Mother’s home in White Plains. She would visit Paul in the early afternoon, then stop off at my house for dinner. Her Sunday visits to Paul and me became a ritual.

Mother also made sure we included Paul at all our family gatherings, often making the long drive to pick Paul up for Christmas and Thanksgiving dinner herself, and ferrying him to my house or my sister’s house for the afternoon. For his birthday she made cupcakes for the ward. He’s your brother, she would say to us. We can’t abandon him. He needs us.

Our mother died in 1993—too young, at only 71, leaving advocacy for Paul in the hands of his siblings. I  have often thought that if she had taken half as good care of herself as she tried to do for her son, doctors might have dealt with her cardiac condition before her sudden death. I’m ashamed to say we were not as diligent about Paul’s care as she had been; within a year after she died, Paul was released—delusional, confused, and unable to care for himself. We siblings tried to advocate for him with social services agencies, etc., but what he needed was supervised care. It didn’t need to be at the hulking psychiatric hospital, perhaps, but there were no smaller, community-based long term care facilities for him. And so began his downward spiral—group home to ER to group home. We siblings did what we could for him, tried to make sure he got medical care, and stood by him when he developed cancer. Unfortunately, he died at age 48, in 2008. Eleven years later, we still advocate for better care and speak out in his memory.

And on Mother’s Day, I remember my mother and thank her for not only her unstinting efforts to care for her son, but also for teaching her children our responsibility to care for those who need help.

Afterword

When Medicaid was passed into law in 1965, it took on from the states about 50% of the burden of caring for indigent people like Paul, who until this time had been housed in institutions funded completely by the states. But a little known part of Medicaid was something known as the “IMD exclusion.” Medicaid will make no payments to any institution for mental disease, or “IMD.” An IMD is defined as any facility of more than 16 beds where more than 51% of its patients between the ages of 21 and 65 are being cared for by reason of severe mental illness. Nursing homes caring for elderly Alzheimer’s patients are not impacted, nor are institutions caring for young patients suffering from mental retardation or illnesses.

While the IMD exclusion may have been meant to ensure that mental patients were not warehoused in huge institutions, in practice it made it impossible economically for state facilities to care for the people most severely afflicted with diseases of the brain. Not only is a facility precluded from being reimbursed by Medicaid for the individual’s day-to-day care, but individual patients’ eligibility for Medicaid is canceled while they are inpatients in an IMD. Consequently, to receive treatment for medical disorders not related to their severe mental illness, they must be discharged from the IMD, have their Medicaid eligibility reinstated, be treated in a medical/surgical setting, and then be readmitted to the “IMD”  Not do-able.

The number of people still needing hospitalization did not shrink as much as the hospitals did. Many people, like my brother, were not helped significantly by the new medications. They remained delusional and unable to take care of themselves, and often too prone to violence to permit their care at home.  Experts in 2016 estimated the U. S. still needs about 50 beds per 100,000 people to care for those suffering from the most severe forms of mental illness. With a population of 310 million, that means the United States needs 155,000 psychiatric beds but had only 53,000. Those seriously ill people have no residential setting to care for them. Many of them have ended up in prison.

In 2014, as part of the implementation of the Affordable Care Act (ACA, or Obamacare), demonstration projects in 15 states temporarily lifted some of the IMD restrictions. Under new leadership at SAMHSA, the Substance Abuse and Mental Health Services Administration, more temporary stays are underway. Hopefully, the relaxation will help demonstrate that our current system of non-care, pretending that people like my brother Paul don’t exist, makes no sense. What needs to happen is a complete elimination of this arbitrary exclusion.

Who knows? Perhaps one day soon, a cure will be found. It is our job to try to care for our loved ones until then.

Further information regarding the status of Federal legislation and treatment standards for serious psychiatric illnesses may be found at  SAMHSA and The Center for disease control CDC

More information can be found at Mental Illness Policy Org. MIPO

To join the effort to advocate for better care for our mentally ill loved ones, visit the National Shattering the Silence Coalition website NSSC

Note: This essay draws from The Great Emptying, a chapter of my memoir about taking care of my brother, titled Shot in the Head, a Sister’s Memoir, a Brother’s Struggle.

Accidental Advocate

Accidental advocate

Four years ago, I published a memoir about taking care of my Schizophrenic brother. When I was working on the book (Shot in the Head, a Sister’s Memoir, a Brother’s Struggle), I did research into national statistics on mental illness, and I was horrified. My family had always thought the poor care my brother received was a horrible mistake. We thought that his social workers must not have realized that the modern psychotropic medications—reputed to virtually cure psychosis—didn’t really help him. They must not have realized that he needed to live in sheltered, supervised housing, not be expected to take care of himself. But, to the contrary, we found this abandonment of people with serious mental illnesses (SMI) to be a nationwide scourge. He was one of hundreds of thousands, even millions of people suffering from serious mental illness, abandoned by the country’s mental health system, destined to a miserable half life of delusions, homelessness and victimization. More than one percent of our population suffers from schizophrenia (that’s over 3 million people), and more than half of them need the kind of care my brother needed. And they’re not getting it.

Most people with a serious mental illness cannot keep a job. Their families often try their best to help them, but they simply can’t handle them when they’re as difficult as my brother. They depend on social services, notably Medicaid, for health care coverage.  Medicaid does a decent job of  providing medical care to the least fortunate of our fellow citizens if they suffer from diabetes or bronchitis, cancer or eye infections. Medicaid pays for their care for physical ailments, even if it involves a multi-week stay in a hospital. But Medicaid funds, from its inception in the mid 1960’s, were barred from caring for people with a psychiatric illness on an inpatient basis. The legislation prohibits its use in the treatment of adults (persons between the ages of 21 and 64) in facilities having more than 16 beds for the specific treatment of mental disorders, a.k.a. institutions for mental disease (IMD). It also effectively prevents the management of long term supervised housing for people whose mental disabilities prevent them from living independently.

Congress included coverage for Alzheimer’s disease and intellectual disabilities in Medicaid legislation; many of us have a grandmother or other senior relative being cared for in a nursing home because of their dementia, the care being paid for by Medicaid. But when the Medicaid legislation was passed there was a concern that if IMD’s were included in the Medicaid program, the states would continue to warehouse people in hospitals instead of providing services in the community, which was their goal. That reasoning has not lived up to the promise, however. Without funding, most IMD’s have closed. Yet communities have failed to provide adequate comprehensive community-based services to take their place, leaving those with serious mental illnesses without adequate care.  No institutions are helping families care for their seriously mentally ill loved ones anymore. Those who are ill are ferried into ERs, then released with a bottle of pills and no real help—if they are lucky. In many cases, they end up in prison, or shot by police called to help the family when their loved one is acting out.

My brother Paul, luckily, never ended up in jail or shot by police, but he was given desultory care, at best.  He was too dangerous for us to let him live at home with us, yet the “adult homes” he was placed in were inadequate for the severity of his symptoms.

I determined that this had to change. I joined up with organizations of family members like me who were lobbying Washington DC for improved care practices. Organizations like the Treatment Advocacy Center, and advocates from Baltimore, Sacramento & Los Angeles, New Orleans—all over the United States. And things have begun to change. With the implementation of the 20th Century Cures Act last year, the Substance Abuse and Mental Health Agency (SAMHSA) has a new, cabinet level head of the subagency that deals with serious mental illness, and they are revamping its activities to make sure those who are most seriously ill get the treatment they need. I now serve on the communications committee of the National Shattering the Silence Coalition, an organization of activist like my self who are fighting to have the IMD exclusion to Medicaid repealed.

There is much more work to be done.  

And now I have added another cause to my advocacy, another response to my writing.

When my teenaged nephew died of a heroin overdose, I had no intention of getting involved in any further advocacy work. I wrote the poetry which eventually became my chapbook, Aftermath, from my sense of sorrow, not with any didactic interests. I found I had to slow down and let the grief sink in. Everything I saw around me was tinged with loss. I had to make sense of this, and of the changed circumstances of my family.  When more sorrows arose—the deaths of two people close to me—it compounded my grief. The collection became a kind of meditation on loss and a search for renewal. 

Yet again, I have found myself immersed in advocacy. I am appalled at the greed and ineptitude that have contributed to the opioid crisis. I am mystified at how little current treatment standards do to help people with substance use disorder (SUD) overcome their addiction and move on to a productive life.  I now speak out for tighter regulation to hold rehab centers accountable for the efficacy of their practices, including evidence- based practices for rehab treatment.  And I encourage efforts to hold accountable the drug companies whose aggressive marketing of drugs like OxyContin contributed to the crisis.

The news is filled with articles about lives lost to opiates. West Virginia and Kentucky may be the epicenter of the plague, but no town in the U. S. has escaped the scourge.  About 75,000 people died of an opiate overdose in the past year. We also, all too often, are horrified to read about yet another mass shooting, many of them involving a shooter with untreated mental illness.  And for every life lost, an entire family suffers.

Congress appears to have come to the realization that the IMD exclusion is preventing the funding of care for people trying to overcome their SUD, as well as those with a SMI.  So people who cannot afford inpatient care try to deal with their issues using outpatient services. There is legislation in the works that may, at least temporarily, allow Medicaid funds to pay for up to a month of in-patient treatment. The legislation is incomplete, however, as it does not take into account how many people with SUD are also suffering from a severe mental illness. Both conditions need inpatient medical care, using verified treatment methods and holding the treatment facility accountable for statistically positive results.

I speak out whatever chance I get about the need for better treatment of both SUD and SMI. (I’m becoming a master at acronyms!) All kidding aside, I am reminded of the parable of the Good Samaritan, who found a man from another town beaten and robbed in a ditch. He took the man home and nursed him back to health. Growing up, we were taught that we must care for people who suffer, help them back on their feet. I guess the lessons sunk in.

One of my poems in Aftermath includes the lines:

Even then you and I sensed this could happen only once. Our lives/ 

would now have a before and after.

Caring for my brother was an experience like that. Losing my nephew was an experience like that.  Sometimes we go through a difficult time in our life and we are changed. In my case, I became – quite by accident – an advocate. 

***

Katherine Flannery Dering is a writer and mental health advocate and serves on the communications committee of the Shattering the Silence Coalition, (http://www.nationalshatteringsilencecoalition.org) an organization that seeks to highlight the need for better care for the millions of people suffering from serious brain disorders. She believes words can effect change, and she hopes her words help in this effort. She also blogs on behalf of sensible controls over illegal opiates and results-proven rehab programs.

Her chapbook, Aftermath, began during the weeks following the death of her teenage nephew from a drug overdose. During the ensuing months, two other close friends died, as well. This collection is, in part, reflections on the question, How do I make sense of my life in the face of death’s inevitability? How do any of us?  She empathizes with other victims of the country’s opioid epidemic and encourages family survivors to speak out for better, evidenced-based treatment. These poems delve into the sorrow of losing someone to drug addiction and asks the question, where do I go from here?

Ms. Dering has lived in Westchester county, New York for over thirty years. Currently, she serves on the executive committee of the Katonah Poetry Series, is on the board of the local chapter of the League of Women Voters, and is an active member of the Pound Ridge Authors Society.  She blogs at www.deringkatherine.wordpress.com.  Visit her website at www.katherineflannerydering.com.  Her chapbook, Aftermath, is available at  https://www.finishinglinepress.com/product/aftermath-by-katherine-flannery-dering/   and at Amazon. Her memoir, Shot in the Head, A Sister’s Memoir, a Brother’s Struggle is available at Amazon.

Schizophrenia and family caregiving   

A Book Club Discussion Guide to Shot in the Head, a Sister’s Memoir, a Brother’s Struggle

This story can impact the reader at several levels. However you approach it – as personal memoir, curiosity about the reality of schizophrenia, or as a simple story of how a family came together to care for a loved one with a serious mental illness,  I hope these questions will help to stimulate some good discussions.

1.    Some of the scenes in Shot in the Head take place more than fifty years ago.  Others involve emotionally-charged situations.  The author states that the book’s dialogue and sequence of events are her “best efforts to present what really took place.” How is its accuracy important to your experience of the book?  What do you expect when you read a book classified  as memoir?

2.    The author describes her lack of involvement in Paul’s care in the first few years of his hospitalization.  What factors contributed to that distance?  How does she change over the course of Paul’s illness?

3.   As much as this book is about Paul and Katherine, it is also about the whole family, especially the other siblings – Monica, Ilene, Patrick, Sheila, etc.  Did you identify with any of the siblings? Which one?  How did ​their relationship with their brother change during the course of his illness?  Where do you see the changes?

4.     Paul’s care changes dramatically over his lifetime.  How do Federal and State legislation impact his care?  What role do you think public agencies, the medical community and insurance companies should play in the care of someone like Paul?  What role should be played by the family – parents, siblings, children? What help do family caregivers need?

5.    How is the care received by people who suffer from brain diseases different from the care received by people who suffer from malfunctions of other body organs such as the kidneys, heart or pancreas?  What factors have led to these differences?  Do you think a person with serious mental illness should be forced to accept treatment? 

6.    Society also deals with brain disease differently than other types of illness.  For example, if your neighbor has breast cancer or a heart attack, you bake the family a cake or offer to help get the patient to medical appointments.  How do you react if you find out a neighbor has bi-polar disorder or schizophrenia?  Why?  How can this change?  

7.    Which of the stories about Paul- things he did, things that happened to him – touched you the most?  

8.    When Paul begins to suffer pulmonary problems, he is diagnosed first with pneumonia.  How do you think his cognitive impairment impacted the level of care he received?  How did it impact his care from the oncologist?

9.    How did his care change when his sisters had him transferred to a nursing home?  How did his behavior change?  Why do you think it changed?

10.    The author uses several genres to put forward her story – narrative, emails, poetry, pictures.  How do these different genres impact the reader’s enjoyment and understanding of the issues and the characters?

11.    Do you believe Paul is better or worse off when he is released from the state hospital?  Give examples of how his life changes.  How do we balance the trade-offs between a person’s desire for freedom and the knowledge of the medical establishment that he or she needs supervision?  Where else in our lives do we see similar trade-offs?

12.  Has your perception of mental illness changed since reading Shot in the Head?  If so, how?

 

Solstice, 7 AM

 

A goldfinch,
plump in morning chill,
perches on a tomato cage
still two feet taller
than the seedling it
will shelter till September.
I’m ready now, she seems to say
to celebrate this long day
and those to follow.

She flits to a high branch
of a tall cedar tree,
the perch—so slender it
bobs under her tiny weight—
a speck of yellow bouncing
in a shaft of morning sun,
then disappears into the lightening sky.

Where do birds go,
When they disappear like that?
My life!
Where do I go from here?

 

Last Dream

Outside the window a breeze swirls.
My brother stirs in his sleep
A dream hangs from his lips.

He is sane in this one.
His lungs burst with hope,
Shoulders broad and strong.

A breeze rustles the trees,
Mohicans stroll along the Hudson.
A nurse paddles her way down the hall.

I fish a tissue from the bedside,
Wipe the spittle from his dreaming lips,
Pluck a crumb from the sheets.

I fiddle in my hard little chair,
Stroke my brother’s hand.
Paul’s lungs succumb.

A tree branch rustles outside the window.
I slip through the shadowy hallway
and out into the rainy spring evening.

 

Today, October 6, 2016 is both national poetry day and Day 3 of mental illness awareness week.  So I am offering a poem from my book about caring for my brother Paul, who suffered from schizophrenia for many years and then developed lung cancer.  Like many schizophrenia victims, Paul suffered from persistent delusions–one of them having something to do with either being a Mohican Indian or being scalped by one. His last weeks, in a caring nursing home, were difficult, yet peaceful.

Read more here

IMD and Anosognosia-Whaat?

My brother suffered from schizophrenia and also from anosognosia.  His story was recently featured in an article  published on Newsworks and my voice heard on The Pulse, which is broadcast Fridays at 9 a.m. and Sundays at 10 a.m. on WHYY-FM, and can be heard live at whyy.org/thepulse or downloaded as a podcast on iTunes.

About 4% or our population suffers from a serious and persistent mental illness like schizophrenia or bipolar disorder with psychosis.  A very large percentage of these people do not believe they are ill.  This is not a willful act.  It is not anything that they can put mind over matter and overcome.  It is part of the illness.  The brain is not working right.  And this aspect of the illness is called anosognosia.

Schizophrenia is essentially a malfunction of cognition. Sufferers misinterpret what they see and hear as untrue (they are not sick; their medication contains rat poison) as well as what they imagine or daydream is real (a delusion or hallucination- they lost their sanity when they were scalped; their parents are member of Al Quaida and should be shot).  They may have moments of clarity, but then are lost again. We as a civilized nation need to remember this, and remember that these are illnesses – just as diabetes and lung cancer are illnesses. Only this time the disease is centered in the brain, not the pancreas or lungs.

Partly because of their inability to understand their own illness and their need to take medication, people with schizophrenia often need long term care in a psychiatric facility. Unfortunately, a little known feature of the Medicaid laws excludes coverage for care if someone is in an “Institution for Mental Disease” or “IMD.”  So without necessary funding, people with treatment resistant schizophrenia often end up homeless and delusional. They are treated in an emergency room when they are really bad, but then released, still confused and unable to care for themselves.

Advocates like my sister and I know that the IMD exclusion must be eliminated if we are to get good care for the people in our population who have a serious mental illness.  We need to treat them when the family identifies the problem, not wait until after they hurt someone or die of starvation and exposure living on the streets.

For more about my family’s struggle, you may wish to read Shot in the Head, a Sister’s Memoir, a Brother’s Struggle.

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The following is the original article published on Newsworks, the interview conducted and the article written by reporter Maggie Freleng.  My thanks go out to both the interviewer and Newsworks for their effort to shed light on this problem. And I hope legislators keep these facts in mind when considering assigning budgets to care for people with serious mental illness.
How to get help when you don’t believe you need it, by Maggie Freleng

Just outside of New York City in a farmhouse in Bedford, New York, Katherine Flannery Dering is looking at photos of her brother, Paul. Paul is one of her 10 siblings, but he stands out among them.

Dering was 12 when Paul was born. She remembers him as the kid who would come running out to say “hi” when she came home from college. She describes him as a handsome boy, about 6’1″, with blonde hair and “startling blue eyes.” He was on the football team, but she said he was also a very sentimental kid.

“He wasn’t afraid to come over and hug you.”

A life, falling apart

Paul died eight years ago, when he was 48 years old. And even when he was dying, he didn’t know he was ill.

“He’d been told he had cancer but he said he didn’t have cancer,” said Dering. “He said he had bad acne, which he swallowed and it got into his lungs and if he would just cough it out, he would get better.”

Paul did have cancer, and he also had schizophrenia. He was diagnosed when he was 16, but he never acknowledged it. He told people he’d been shot in the head.

Paul spent most of his life in inpatient care facilities from the 1970s until the 1990s, when states shut down these psychiatric hospitals. He was released to live on his own where, without constant care and medication, his mental and physical health declined. Dering recalled that he became unstable and unpredictable. He was so consumed with his own thoughts that he lost the ability to care for himself, barely eating and not cleaning himself or his home.

He maintained that his unstable behavior was from external factors, like being shot in the head.

Her brother sufferered from a condition known as anosognosia– the inability to recognize one’s own illness. It’s very common in people with schizophrenia.

Unaware of illness, refusing to get help

Doctors have been aware for centuries that some people are blind to their own ailments, but the person who coined the term ‘anosognosia’ was the French neurologist Joseph Babinski.

In the early 1900s, Babinski treated two partially paralyzed patients, each of whom was unable to move her left arm. When asked to do so, one woman acted as if the question had not been asked; the other insisted that she had done it. Babinski called this lack of awareness anosognosia. Experts now recognize it in conditions as diverse as Alzheimer’s disease, brain injury and anorexia.

Experts don’t know for sure what causes anosognosia, but they have noticed that it involves an imbalance between the two halves of the brain, the hemispheres.

Psychiatrist Philip Gerretsen, a researcher at the Centre for Addiction and Mental Health in Toronto, said the setup is like a twin propeller plane.

“If you think of each propeller as representing one of the brain’s hemispheres, the two work in tandem or work together to help the plane fly in the proper way,” he said.

“Now in a healthy brain, things tend to be smooth moving along in the right direction. Whereas in anosognosia, one of the brain hemispheres is underactive and then veers the brain, or the plane, in the wrong direction.”

In a recent study, Gerretsen and his team asked people with schizophrenia to ungergo brain scans while answering a list of questions. Things like: Do you have schizophrenia? Are you mentally well? Is the devil’s voice real? Do you need treatment?

Those who had the most trouble distinguishing thoughts from reality tended to have asymmetrical activity in their brains, with the left hemisphere working harder than the right.

Gerretsen speculates that a factor in this phenomenon is the brain chemical dopamine. Often called the happiness hormone, dopamine pulses through the brain when people fall in love or eat a satisfying meal. But Gerretsen said that dopamine also assigns levels of importance to our experiences. And when dopamine goes haywire, as in a brain with anosognosia, neutral occurrences, such as the glance of a stranger, can take on too much significance.

“They have these strong beliefs that they are being, say, followed by the Mafia or someone is persecuting them and in those contexts dopamine seems to be assigning a higher level of meaning to these thoughts than it otherwise should be.”

Dissecting your own thoughts

“Sometimes the things your brain is telling you are happening aren’t actually happening,” said Michael Hedrick, who writes about living with schizophrenia for The New York Times, The Washington Post, Scientific American among others.

“For instance, if you walk into some store or some restaurant and you believe people are talking about you or you hear laughter and you believe that laughter is about you,” he said. “Sometimes it is really hard to separate that belief, that paranoia, that delusion from reality.”

Hedrick was diagnosed with schizophrenia 10 years ago when he was 20, and said it’s been a wild ride.

“Even now I can’t trust entirely what my brain is saying to me. It’s kinda like I have two levels of consciousness…I have my conscious self that knows what’s going on and I have my crazy brain which tells me things and I’m able to dispute what my crazy brain is telling me in my conscious brain.”

Michael got on medication when he was first diagnosed and has stayed on his medication ever since. He said he believes it is why, unlike many people, he is able to have insight into his illness. But he also said the only reason he got on medication in the first place was to get out of the hospital after his initial episode.

“I figured if I took my meds they’d see I was improving and they would let me out,” he said. But he actually was improving.

Michael said he has not had a relapse since, and said he feels lucky he got medication at an early age. He thinks it’s why he is able to function better than people like Paul who have had years of inconsistent care.

When Michael was first showing signs of schizophrenia, he believed he was a prophet sent here to establish world peace. He said his parents knew something was wrong when he started telling them about his mission, and he was frustrated that they didn’t believe him.

“I wanted them to understand so badly but they knew something was wrong and they took me to the hospital,” he said.

“It felt like betrayal for them to do that, but I can see clearly now…It’s hard to explain any of that to anyone who is normal.”

Helping families help their loved ones

This is where many families face problems getting help; communicating with a with a loved one when that person is divorced from reality.

“There’s really no reason to keep throwing gasoline on the fire of this conflict,” said psychologist Xavier Amador.

Amador is the author of many books including one entitled, “I ‘m not sick, I don’t need help.” He’s also the founder of the LEAP Institute. Which stands for: Listen, Empathize, Agree and Partner.

Trying to force a person with anosognosia to see things the way they really are only deepens the rift. Instead, Amador encourages caretakers to acknowledge the sick person’s version of events, and to make suggestions, not proclamations.

“I wouldn’t want treatment for an illness I don’t believe I have.”

He said the goal is to find common ground. Once a trusting relationship has been re-established, it’s more likely the person will take advice and make better, autonomous, decisions. Like getting on and staying on medication.

Grieving, remembering, and advocating for change

Katherine Dering said her brother Paul had been out of constant care for so long, she was never able to get him back on track. Eventually his health severely diminished. He developed pneumonia and was put into a nursing home where he was later diagnosed with lung cancer.

“When someone dies, you grieve them,” said Katherine. “But if they don’t die — if they have schizophrenia and they don’t acknowledge they are even sick and do bizarre things and disrupt every family gathering — you’re in a constant state of grieving. You never get over it because they are still there.”

One of the last times the Flannery siblings got together was on St. Patrick’s Day in March of 2008. Paul died a few months later on May 1.

Today, Katherine is doing advocacy work for families dealing with mental illness. She goes to conventions and seminars with her sister Ilene Flannery Wells, Paul’s twin. They dress up as Nellie Bly and Dorothea Dix, two women critical in mental health activism at the turn of the century and carry posters reading: “Schizophrenia: It’s medical not behavioral” with pictures of Paul.

Dering brings posters and signs when she is advocating at conventions. One headline stands out. It says, “I Was A Person.” The poster features two pictures of Paul, one at his 9th grade graduation and the other taken when he was only 48. He looks about 80, scrawny and toothless. But Dering wants people to see the person she loved.

“He was pretty looney at times but he was a person,” she said.

Katherine wrote a book about Paul’s life called “Shot in the Head,” and doctors are taking steps every day to figure out ways to help people like him.

Tearing up, she describesd one of her favorite memories of Paul. One day they drove up to a lookout point to watch eagles together. As they were standing there, Paul brought up reincarnation.

“I asked him, ‘Does he want to come back as one of these eagles?’ And he said, ‘I’d just like to come back as one of the sane ones’.”

 

 

Two Poems

Visiting
– for Carolyn

I’ve come for coffee,
a visit with the other grandma,
who needs some company.

I think we’ll chat
for an hour or two.
She knows she’s dying.

Cannulas hiss. Pulse ox
we watch. She nods
and gives a thumbs up sign.

I’m OK for now, she mouths,
then coughs from the effort.
Morning passes into afternoon.

We talk of respirators and
ministers. I call her daughters
Thank you, she mouths again.

Our grandson plays
quietly in the next room.
Rain pelts deck furniture.

Here in the den old friends
wait, hold hands, think of
childhoods and parents

long gone, siblings,
husbands and children
we’ll leave behind.

[Death waits just outside.]

 

 

Doric Loop

I.

It’s a simple casket, its wood polished to a high luster, the lid edged by a pleasing curve. Something simple; only needed for a couple of days.

Casket: 1. a small case or chest, as for jewels or other valuables. And what could be more valuable than this boy, this almost man, this never to be a man? 2. a coffin, possibly an alteration of the old French, cassette. An endless loop? Is this an endless loop of foolish choices and bad judgment leading to inevitable tragedy?

Not a cask: (a barrel, a cylindrical container that holds liquids.) Nor a casque, so famous for Poe’s The Casque of Amontillado, and poor, vain Fortunato, left chained to a moldy brick wall behind an archway, deep beneath the river. (Fortuna: Spanish for fate, the inevitable, nothing to do with fortunate, meaning lucky.) In ancient Greece the three fates, Clotho, Lachesis and Atropos were thought to control human destiny. I’ve met them in the Sunday crossword every now and then.

A casket. A tisket a tasket – a green and yellow one would surely stun this assembly, a bizarre mix of family and my nephew’s druggie friends – black-clad boys with ear plugs and tattoos on their necks and a girlfriend/baby mama with the obligatory nose ring, a spray of red roses tattooed across her chest and black latticework along her arms.

The classic curve of the wood, the inverse of the fluted columns on the simplest of Classic Greek styles. Is this an ogee curve? Another crossword puzzle word.

II.

An old man told me once about the worst funeral he had ever attended. It was across the river in Haverstraw, back in 19 and 36, he said, a very cold winter in these parts. As cold as this one? As he spoke, I pictured Depression era men in overalls carrying a casket like this one across a snowy field on a cold, blustery day like today. The cemetery was on a steep hillside looking out over the Hudson, and when one pallbearer lost his footing, the coffin dropped and slid – to the horror of the assembled family and friends and well-wishers of one sort or another – and took off down the steep incline like an Olympic luge, till it rammed a tall monument erected some years before in honor of the town’s former mayor and sprang open, flinging the corpse in a perfect 10 of an arc to land in a seated position a little further downhill, leaning against the headstone of a Mrs. Mary Ellen Hitchens, may she rest in peace, before it (the corpse, not the headstone) fell over on its side.

Women screamed. A flock of crows flew up into the winter sky cawing excitedly, a black cloud circling and blocking the sun. Friends moved to shield the horrified family from the ghastly sight. Funeral employees and pall bearers hurried to recapture the elusive body. With each step as they ran down the hillside, their feet broke through a thin crust of ice into softer snow below, which proceeded to fill their black dress shoes with clumps of icy crystals that melted into frigid pools. Embarrassing wet spots appeared on their pants where they fell. It was some time before they could get the deceased positioned back in the box and the box placed into its resting place.

I don’t really believe this story, though the old man promised it was true. But then, again, Santa Claus was supposed to be true. God was supposed to be true. I’d like to think that the spirit, at least, flew through the air, to meet with dear ones again on God’s golden shore, as the Soggy Bottom Boys sang. Though how our spirit selves will recognize each other without bodies, still trapped down there under the snow, I don’t know.

III.

There’ll be no snow for this casket. My nephew will find a warm welcome tomorrow at the local crematorium, a small brick affair, absent of any decorative moldings, smooth Doric style or otherwise.

This afternoon, aunts, sisters and friends of the boy stutter out sad stories. The boy’s uncle, my brother, plays his guitar and an aunt holds her hymnal and sings, “In the sweet bye and bye. We shall meet in the sweet bye and bye.” And my sister sits and wrings one wad of tissues after another till this crowd of weeping mothers and fathers and friends finally goes home.

The lovely curve of the lid is almost hidden under the spray of roses and carnations, all white for the boy, white for his youth, white for… I don’t know what for.

And we scoop my sister up and get her some food at Cappola’s down the block, in a brick building that has been partially stuccoed to resemble a Tuscan villa, with stone Italian-style arches, like those where poor Fortunato found his eternal rest.

*

These two poems first appeared in the Manhattanville Review in January, 2016.

Katherine Flannery Dering holds an MFA in Creative Writing from Manhattanville College. Her memoir, Shot in the Head, a Sister’s Memoir a Brother’s Struggle, was published in 2014. Her poetry and essays have appeared in Inkwell Magazine, The Bedford Record Review, Northwoods Press, Sensations Magazine, Pandaloon Press, Poetry Motel, Pink Elephant Magazine, Six Hens, and River, River. A narrative non-fiction piece, which later became a chapter of Shot in the Head, was included in Stories from the Couch, an anthology of essays about coping with mental illness. She is a member of the advisory board of The Katonah Poetry Series.

What motivates her to create:
Most often a sudden inspiration while I am driving requires that I pull over to the side of the road and jot it down. A phrase, an urgent new expression of a belief or attitude toward the world, a moment of sorrow, a truth. Scraps of scribbled paper beg life as a poem or essay. A series of inspirations becomes a book. I love beautiful sentences, a carefully crafted images, and I strive for the aha! moments when writing something I never knew before.