Unhappy Birthday

By Patrick Tracey

Austine Christmas 2013Writing about family mental illness is a lot like treating an open wound: you flinch, unsure if it’s really worth it. Only later does one see the healing.

A week ago I saw my sister Austine, on the occasion of her birthday, and I haven’t been able to write a word of this blog since.

You see, there’s this depth of fear in her eyes that haunts me, an inconsolable sadness.

Plus, she doesn’t speak. My sister Austine is sunk in silence, so meekly catatonic that the vast distance between us fills me with dread. She’s as unreachable as a distant star, and I am helpless to help her.

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Blood Test May Help ‘Normalize’ Schizophrenia

By Patrick Tracey

Blood TestIf it’s not used against you, a blood test for schizophrenia, which appears to be in the offing, may turn out to be the single most useful way to help stamp out the stigma.

It’s not for everyone. Blood tests for biomarkers raise the specter of mental illness scorecards for one in five Americans, generally, who have a clinical mental disorder. Whether to be tested for the markers will be a very personal choice.

Yet since there’s no lab test or brain scan to confirm schizophrenia, when someone’s sanity crumbles like a wall of dust, as happened, twice, in our house, families go on an endless search for answers.  A blood test that confirms one condition or another would seem to be a good place to start.

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Discipline for ‘Disgusting’ Restraint Death

By Patrick Tracey

 

Because inhumane treatment of mental patients should always shock the public, the governor of Massachusetts showed his own undisguised disgust for the unpunished death of a 23-year-old Massachusetts man diagnosed with paranoid schizophrenia.

Massachusetts Governor Deval Patrick intervened Saturday with disciplinary action for three Massachusetts state prison guards put on paid administrative leave for their roles in the death of Joshua Messier.

Correction Commissioner Luis S. Spencer was also given a formal reprimand for his inaction.

Patrick said at least two should face disciplinary proceedings for improper use of force in the death, which was determined to be “homicide” four years ago by medical coroners–with no further action! The district attorney never presented evidence to a grand jury, despite the homicide finding.

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Restraints Banned After Man Killed

By Patrick Tracey

Prison SchizophreniaA Boston Globe story on Sunday moved the governor earlier today to end the use of four-point restraints on the mentally ill in state prisons.

Citing the horrific death of 29 year-old  Joshua Messier, Massachusetts Governor Duval Patrick said inmates who are not a serious danger to themselves or others “should not be tied down, limb by limb, in the 21st century here in Massachusetts,” the Globe reported today.

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Death of Man in Restraints Questioned

By Patrick Tracey

Joshue MessierJudge for yourself from this video showing the final moments of Joshua Messier’s 23 year-old life in state care.

After being restrained by all these big guards at Bridgewater State Hospital putting all their weight on him, you can see him turning blue and die.

Read for yourself today’s expose in the Boston Sunday Globe.

It begs the question: Was he killed by the state just for exhibiting symptoms of schizophrenia?

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Genetics Heralds Exciting Era

By Patrick Tracey

Amy BoeskyWhat’s to be done with genetic information? Would you prefer to know the bad news? Or would you rather just roast on the spit of indecision, hoping for the best?

There is no gene test for schizophrenia yet, but it’s on the horizon, coming to a genome lab near you, eventually.

When it does, we’ll all be genetic pioneers. Or genetic guinea pigs if we’re not careful.

This weekend four writers facing four different genetic disorders were interviewed on the BBC Health Check Series, each unpacking a family history that’s a reminder of the cruelties of biology.

(Full disclosure moment: The four are my fellow essayists in The Story Within: Genetics and Personal Identity.)

Think about it: a tiny spelling error in any one of the roughly 20,000 genes that comprise the human genome can disable a person for life.

Of some 7,000 disorders that plague man, about a quarter of them have genes that have been implicated.

In about 600 of these, genes can be diagnostically tested.

Joining the BBC host to help guide the discussion led by Claudia Hammond, Sir John Burn, a  professor of Clinical Genetics at Newcastle University and a world authority on genetics, noted that, in the opinion of many, it’s only a matter of time before all genes are known for all disorders.

Schizophrenia may be one of the last genetic locks to be picked. This is because there’s not one single gene for the disorder but dozens, none necessary nor sufficient alone to cause it.  Non-Mendelian, in other words.

Still, every few months sees exciting new discoveries. Just last week, a link was found between a largely unstudied gene for schizophrenia, ULK4, and bipolar disorder, depression and autism.

While the University of Aberdeen-led research–published in the Journal of Cell Science–set out to look for genes that might be important for schizophrenia, this particular gene had been associated only with hypertension, never with mental disorder.

“What’s going to happen increasingly is that people are going to have their whole genome sequence for one reason, and then be found to carry a spelling mistake in an important gene elsewhere,” Burns observed.

He predicted that drug makers will be interested in families afflicted multiply with specific genetic illnesses.

If an anti-psychotic works for a family as hard hit as our own here in Boston, say, then it’s a better bet to work for many more families with schizophrenia.

Still, decisions to have your genome sequenced may never be black and white. Much hinges on whether there’s anything useful to be gained from the  information.

“We don’t twist people’s arms,” says Burns. “We simply give the opportunity.”

Amy Boesky, a Boston College literature professor who edited The Story Within, told the BBC she’d elected to have her breasts and ovaries removed without testing for the braca gene that took her mother.

While the essayists in the collection have a range of disorders that thrust themselves into our families, that seems only fitting: what unites us is the need to encourage greater respect and tolerance for genetic variation.

“A number of us said when we met this fall that we felt like we were part of a larger family,”Boesky notes.

“Many of us feel that we are working against generations and layers of guilt and shame and stigma associated with hereditary conditions.

“And I think that’s been a reason for not only being willing but wanting to speak out and write about this, no matter how hard it is.”

Hammond sums up the misfortune. “You want to be the lucky one, but you don’t want the others in your family to be the unlucky ones either.”

Clare Dunford’s son JP has Fragile X, a disorder that comes out of the blue to consume one’s life.

JP was diagnosed at age 7. “It erupted and transformed my family and in some ways makes us feel our families have come to a dead end,” Dunsford tells the BBC.

Tufts University creative writing professor Michael Downing was tested for the genetic mutation for his family’s hypertrophic cardiomyopathy, which causes sudden heart attack, and killed his father at 44. After his brother died in 2003, the family was tested.

Asked how he copes, Downing frankly says he doesn’t. “You don’t cope with it, actually. You just receive it and try to take it in.”

Kate Preskensis speaks about the early onset Alzheimer’s that has claimed her mother among five family members.

“I live under my own magnifying glass—a  constant examination of my memory, choice of words, and emotional state,” she writes. “All aspects of my life are stifled by the knowledge that Alzheimer’s  disease in our family is linked to a specific traceable gene.”

Like me, Preskensis has held off on having kids. However tragic the past, genetics stalk our future too. Until there’s a cure, mischances shadow the unborn too.



Mother Begs for Help for a Boy and His Voices

By Patrick Tracey

Gianni Boy MomA stunning portrait of a helpless family that was posted last night on CNN has gnawed at me all day long. The depiction of a child diagnosed with bipolar schizophrenic affective disorder ran under the hard-to-ignore headline: Suicidal at Age 4.

It’s a family tragedy of the first order, so it’s admirable to say the least that this family has plucked up the courage to tell it like it is. So few do, it’s a rare thing indeed, yet it is what’s needed most of all.

Voices and visions are what Jennifer Cristini and her husband Vittorio are up

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Familiarity With Schizophrenia Builds Better Outlook

By Patrick Tracey

ViolenceIt takes one to love one. People who have been diagnosed with mental illnesses make the most positive mental health workers, a survey shows.

If most people shun people with schizophrenia—and they do—every third person working professionally in the field of mental illness also keeps a  distance.

The more exposure you have to schizophrenia, the less fearful you are. And if you’d had a mental illness yourself, you tend to be more understanding. Ignorance breeds fear breeds isolation.

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60 Minutes Moves Nation Briefly

By Patrick Tracey

Creigh DeedsFamily mental illness is a top trending issue thanks to Virginia State Senator Creigh Deeds’ speaking up on 60 minutes.

The story of how Deeds was slashed and stabbed repeatedly last November by his son Gus, who then took his own life, feels like a galvanizing moment.

But in listening to the president’s State of the Union Address tonight, not a word was heard about mental illness, apart from a passing reference to the Sandy Hook Elementary school shooting.

It was an impressive act of courage for Deeds to liberate the nation from naive notions about the availability of mental health treatment–even for the sturdier pillars of society–for one night only. But my inner cynic tells me our restless nation has already returned to its obliviousness. Only fellow families truly stay with this story.

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Death Penalty for Psych Symptom

By Patrick Tracey

Pakistan NooseTo be mentally symptomatic is to face execution.

As of Thursday, at least, in Pakistan.

That’s when an elderly British man was handed a death sentence–hanging–for having a religious delusion, a symptom so commonly found in  schizophrenia.

Amnesty International, which has cried foul, is calling for his immediate release.

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