(ir)Rational Minds

HIPAA is a Threat to Health & Public Safety

2012-02-18T13:47:00.000-08:00

One of my goals in writing this blog is to provide a place to highlight other people's stories as well. It can be difficult to openly discuss issues that are so raw and culturally stigmatizing. The legal barriers to securing treatment for the gravely mentally ill are nearly insurmountable. The situation is deeply frustrating and tragic--the only thing more frustrating, I think, is how isolated many people in this position feel. The social barriers to discussing family experiences can be equally daunting, which is why I have great respect for the blogger who wrote the following post:

How HIPAA Destroyed my Dad's Health

I never expected to have much in common with a gun-toting, Christian conservative who opposes gay marriage. But that's the funny thing about mental illness--it strikes at random, casting your lot in with folks from all walks of life--every class, ethnicity and political persuasion. It's an equal-opportunity disease. While Mr. Zdziarski and I would probably be pressed to sustain a civil conversation on just about anything besides how cool bass guitars are, we are both unwilling witnesses to how destructive a little-known and badly-crafted law can be. Simply put, HIPAA destroys lives. His story could easily be mine, and his burdens are my burdens, too. I hope it's not too blasphemous to add that his family is in my prayers.

He does a great job providing a compelling, accessible answer to the popular and slightly grating question that always arises when public tragedies occur: Where was the family in all of this? Why didn't they act more responsibly? In describing the failed attempts to secure care for his father, Zdziarsky writes, "Our federal HIPAA laws have forced me to watch his mental health degrade as if from behind iron bars – knowing that our federal government has rendered me helpless to do anything to help him pro-actively." And with that he was able to put into words the howling rage I feel in the face of imposed powerlessness.

I truly believe that the government took my mom away. It is torturous knowing that she is locked away in her mind somewhere, and that more of her slips away every day. With each new episode of psychosis, her brain endures further damage. She has no idea what is happening to her, and the only thing worse than watching her go through this is imagining what she would say if she knew. Hell hath no fury like my mom scorned. She would be outraged that we weren't allowed to help her. It would grieve her to see how distanced she'd become from her loved ones. The waste of time, the waste of her life would be truly maddening, and she'd be horrified at the state of her living conditions. She'd be as inconsolable as we are.

Maybe that explains the waves of guilt that arrive unexpectedly, threatening to topple me while I'm in line at the grocery store or sitting in traffic. My mother was an indomitable, passionate force of nature. She would have stopped at nothing to fight for any of us were the situation reversed. I can easily imagine her chaining herself to the doors of city hall and raising a well-staged media ruckus, leading protests and writing letters to politicians until her fingers wore out. She would never give up. But us? We've been worn down after more than a decade of roadblocks, legal nonsense, and slammed doors. My grandmother is fragile and heartbroken, and my dad is just trying to minimize any collateral damage.

We had an unlikely brush with hope last winter. A doctor actually called us, likely in defiance of the law. He informed us that my mom needed medicine (duh) and that he was willing to take the legal steps necessary to get it for her. I'm not sure I can really describe what it's like to stand before the possibility of having your deepest prayer answered after 12 years, to be so close to experiencing what feels like a true miracle. For the first time ever, I allowed myself to imagine what it might be like if I could talk to my real mom again, to be able to part the cloud of nightmares and pain and actually reach her. I started sobbing uncontrollably, something I hadn't let myself do since the first time she was committed. I knew exactly what I would say to her: "I'm sorry. I'm so sorry we couldn't help you sooner. We've tried so hard, mom. I'm so sorry for what you've been through."

I never got to tell her, though. She only received medication for 7 days. She was released from the hospital once she was calm and no longer a threat to society, before the drugs had a chance to do any real work. Schizophrenia is a chronic disease, and like other chronic diseases requires sustained treatment to do any real good. This is likely her future--a revolving door of the police occasionally dropping her off at the hospital, and maybe if she's lucky receiving a few days of medication before she's discharged. This will do nothing to quell her fears of being 'drugged into submission' and will do little to stem further brain damage. It might even be worse than doing nothing at all.

HIPAA's gag rules are concerning to patients who are in recovery as well. Crazy Mermaid, a blogger who is in treatment for schizoaffective disorder, writes eloquently about how HIPAA laws deny ill relatives the ability to "obtain advocacy and help at a time of critical need." In the world of revolving hospital doors, you don't always get a say in which medication you receive and a lot of doctors are operating without full patient histories. When relatives can't communicate with physicians, patient care can and does decline.

I would love to see lawmakers try to defend the flawed logic she points out behind these policies: "The bottom line is that the State selectively decides which rights to strip the patient of and which rights to allow the patient to keep. They make the absolute worst value judgment in the history of humankind: the State assumes that a patient who loses his mind to the point that he has to be committed to a mental hospital has somehow retained the ability to advocate for himself...The patient is left vulnerable, the paranoia freezing out all other thought. And with their civil rights stripped and an ill brain, the patient’s supposed to be able to make rational decisions and act as their own advocate? Yeah right."

To recap, it appears that a slew of stakeholders--patients undergoing treatment, concerned family members, social workers, and even that sainted doctor who broke the law to contact us--all recognize that HIPAA is counterproductive. So why does it continue to exacerbate everyone's problems unchecked?

If Mr. Zdziarski and I can both agree on how damaging these policies are, there ought to be enough political momentum to reform the law. It shouldn't affect government spending that much. It doesn't take sides on the health care debate. The only real obstacles I can see are apathy, misguided civil liberties lawyers and a well-heeled cult. It's an unlikely, incongruous jumble of opponents, but a seemingly effective bunch nonetheless. It's hard to wrap my head around how a loud, vocal minority has managed to dominate and twist this debate. It defies logic, reason, and the experiences of probably a million otherwise politically opposed citizens. If more of us spoke up, the roar of outrage would be deafening.

What You Don't Know Can Hurt You

2011-12-21T21:06:00.000-08:00

After reading my last post, someone asked me if there were any policy remedies available to make things easier for the gravely mentally ill and their caregivers, or any organizations that were working on these issues. The answers are yes and yes, and I promise I'll get to that soon. First, I think I need to explain a little about what the barriers to treatment look like today, and how we got ourselves into such a big mess to begin with.

The short version is that as a society, we may have overcompensated for past abuses. In my experience, when most people think of mental illness treatment at all they hold some vague impression in their minds that is likely influenced by One Flew Over the Cuckoo's Nest. Or soap operas. Or maybe both. The problem is that neither of these images reflect reality anymore. The undeniable truth is that historically, the mentally ill have had their individual rights trampled upon. Often, they were subjected to crude, painful and ill-informed procedures without their consent. And in some countries, political dissidents are still locked away in asylums as a punishment. All of these abuses are deeply troubling and have been rightfully challenged.

Our country's mental health reforms, while well-intentioned, ended up creating a whole new set of problems. Many initiatives were never fully funded by the government and haven't kept pace with emerging science. Before I get much further, I feel like I need to put in a disclaimer of sorts--personally, I believe that anyone with the mental capacity to understand they are ill should be allowed to reject treatment if they so choose, as long as doing so doesn't put others in danger. I believe in civil rights. As someone who recently visited a Communist country, I can state with conviction that those rights are precious and shouldn't be taken for granted. I get it on a pretty visceral level, and I agree with you.

-And- I also believe that people who lack the mental capacity to understand that they are ill have a right to treatment. We do this sort of thing all the time when people are unconscious or in comas or suffering from dementia. The decisions are not easy, nor are they taken lightly. It's better when you can anticipate the patient's wishes, but we still do the best that we can for them. It doesn't work that way, though, for a lot of people with bipolar disorder and schizophrenia.

I think the best way to explain things is to share a little about what happened to my own family. My initial memories are a little fuzzy, though, which is unusual for me. I'm notorious for having a photographic memory, but this one chapter feels rather disorderly, like it was covered in scribbles instead of words. I mostly remember being numb with shock. I remember sitting in an office with a school counselor, leafing through her copy of the DSM-IV as we tried to puzzle together over what was wrong with my mom. I remember panicky late-night phone calls from my dad and grandmother, detailing her increasingly bizarre behavior.

I remember calling the Mobile Health Crisis Unit on the counselor's suggestion, and taking an emergency week off work to come home for an intervention. That's when things started to get really weird. Our relationship had already been tense for awhile, mostly due to the usual tug-of-war you reach once kids near independence and parents become empty nesters. I wasn't really prepared for what I was about to face...secondhand knowledge of the situation turned out to be very different from experiencing it for myself.

I remember sitting in her bedroom, begging her to consider that her delusions weren't real. "Look at me," I entreated, "do I look like someone who's been tortured or raped? I'm fine, mom. I'm healthy, I'm happy...I'm a little tired, but besides that I'm fine. Can you please trust me? Just look for yourself, I'm right here." The one part that has remained clear over the years is the way she stared right through me, as if I didn't exist. I felt a cold wave of fear spread over as it dawned on me that she wasn't really there anymore. Instead, a woman who resembled her was staring at the wall behind me. After a minute or so, she frowned and announced to the wall, "I just don't know. I don't think so, no." It felt like we were all characters in a horror movie.

At some point, maybe later that day, the Mobile Crisis Unit arrived. For all her newfound paranoia and altered perceptions, Mom#2 was no dummy. She knew that regular people weren't gifted with her voices, and she knew what would happen to her if she admitted that she could time travel and knew where murderers hid their victims' bodies. And so she didn't bat an eyelash while telling the social workers that everything was fine. It didn't faze them--they've seen it all before. After she left the room, the team lead looked my father and I square in the eye and said, "If you want to help her, you have to lie. Lie like you've never lied before, and you better make your performance count. Her life may very well be on the line."

That was the second shock to the system. Um, what? She saw how confused we were, and continued, "The only way she'll get help is if she's an imminent danger to herself or others. Otherwise, the hospital doesn't have to keep her. They won't do anything to help her." My dad responded, "I'm not sure that's necessary. She's clearly out of her mind and has threatened suicide before. The truth ought to be bad enough..." I blinked several times. Was this really happening? Was a social worker actually in our living room, recommending perjury? I stared at a childhood painting on the wall, something that felt fixed and familiar. The woman continued, "I'm afraid not. Not unless you have the ability to prove that it's imminent. Has she ever actually tried to kill herself before? Brandished a knife in front of you?" "Well, no..." "Then it doesn't meet the standard."

Doesn't. Meet. The standard? My mom's body was upstairs, her brain locked in a loop of violent, debilitating nightmares, completely divorced from reality. I tried to follow the conversation a little better. "Are you telling us," I asked, "that she has to attempt suicide and fail in order to get help? Is that the outcome we are supposed to hope for?" "That's why you lie," she answered forcefully. And that's how I came to find myself in a dark, marble hall the next day, outside the offices of a probate judge. My dad and I hadn't discussed our strategy much. We came armed only with a haphazard pile of papers--testimonies from relatives, a behavior log, medical histories. 'Lie', I whispered to myself. How the hell was I supposed to lie when I couldn't string together a single sentence without crying?

At some point, the police came. Maybe it was the next day. Dad said it was important that I be there for her when they came to take her away, but I couldn't do it. She wasn't there, that wasn't my mom, this was all too awful to process. Why couldn't anyone understand that? The next thing I remember is being at the hospital. We arrived shortly after she was admitted. No, we couldn't see her. Yes, we could talk to the doctor. Each minute dragged along painfully until he showed up. I wish I'd known better than to hang so much hope on that conversation. At that point, we both still believed that as painful and damaging as everything had been so far, it would all be worth it in the end because now she'd get help. We were so naive.

When the doctor arrived, he told us that he couldn't tell us anything except that she was a patient there. Of course she was a patient...who do you think was responsible for admitting her?! Oh yes, that would be me, the miserable excuse for a daughter who couldn't hold it together enough to even meet the police when the time came. The doctor couldn't tell us how long she'd be there. He couldn't tell us if he'd received our paperwork from the court, if she was taking any medication, or if she had been officially diagnosed with anything. All of that is private, you see, because of HIPAA. The conversation went something like this:

Us: Can we just--
Doc: Nope, sorry, HIPAA.
Us: But she might not have told you about--
Doc: Doesn't matter, HIPAA.
Us: There really are some things you ought to--
Doc: Which part don't you understand, the 'HIP-' or the '-AA'?
Us: Are you capable of saying anything else besides--
Doc: HIPAA! Sorry, but I can't speak to you unless your relative signs a release form.
Us: Um, she's flagrantly psychotic at the moment and highly paranoid...not to mention a little upset that she's here.
Doc: Hmm, sucks to be you then. Run along, now. HIPAA.

A month later, she was released to a homeless shelter without ever receiving treatment. And that was how we first tumbled down the rabbit hole. Occasionally, light filters down from the real world, reminding us of what regular lives look like. We exist on a darker, parallel plane where doctors are gagged, laws are encouraged to be broken, the insane are in charge, and nobody takes any responsibility.

It's a state of limbo where you're ashamed to wish for the slightly-better-than-very-worst--a botched suicide, perhaps, or a minor flesh wound within the family. Brandishing a gun in public might be nice. Something actionable, measurable, and preferably with outside witnesses. Imminence affords no ambiguity or protection. Wave a crystal ball around and hope like hell that everyone else believes your darkest predictions, because that's what it takes to get help. In the meantime, the tissue damage is spreading unchecked, like wildfire.

How

2011-12-18T14:54:00.000-08:00

Laboratory of Neuro Imaging, UCLA

"Scientists have been perplexed about how schizophrenia progresses and whether there are any physical changes in the brain. We were stunned to see a spreading wave of tissue loss that began in a small region of the brain. It moved across the brain like a forest fire, destroying more tissue as the disease progressed."

--Paul Thompson, UCLA School of Medicine

Scientists still don't know why schizophrenia occurs, but they're doing a little better when it comes to mapping how it affects the brain. A lot more research is needed, but some clear pictures are emerging: the disease affects brain chemistry, structure and function. The damage begins early, likely during fetal development, and gets markedly worse during adolescence when the brain undergoes rapid changes.

It still saddens me whenever I am confronted by perceptions in popular culture of the disease as some sort of random phenomenon that is used for humor or horror purposes. Often, it seems to be presented as if it were a choice or a personal failing, or the product of a bad home life, or maybe a side effect of drug abuse. The truth is that it is a disease that attacks the brain's limbic system as well as a few other neighboring regions. Most of the damage occurs in the left hemisphere, in ways that seriously mess with your perceptions. The end result is that it's difficult for your brain to distinguish between what is real and what is imagined.

One of the main problems is with neurotransmitter levels, which are the culprits for a bunch of other brain disorders as well. Let's start with dopamine as an example. With Parkinson's Disease, you don't have enough of it. With Schizophrenia, you have too much. It's weird to consider what my mom's life would be like if the chemical tables were turned. She'd probably be treated with a lot more compassion if she had Parkinson's instead. She'd have a celebrity spokesperson to champion her cause, and a well-backed research foundation to boot. She'd see a neurologist, not a psychologist, and would have the mental capacity to understand she was ill. (More on that in a minute.) I suppose the grass is always greener...in any case, she's got too much dopamine, not enough glutamate, and probably not enough serotonin, either. It's a literal chemical imbalance.

There are structural differences, too. Patients with schizophrenia have enlarged ventricles (see image below) as well as basal ganglia, and a lot less gray matter. The hippocampus and amygdala are often smaller, too.

Slideshow: A Visual Guide to Schizophrenia, WebMD

They also experience heightened activity in some areas of the brain, and lowered activity in other ones. This next visual is a particularly fun image that gave me nightmares the first time I saw it...it's a snapshot of how badly screwed up both my mom's and my brains likely are. People like me are in the middle, and most of you look like the one on the left:

McGovern Institute for Brain Research, MIT
via ScienceDaily

Good times. Incidentally, healthy first-degree relatives also seem to be more prone to conditions like autism spectrum disorders and ADHD, as they may share a common genetic mechanism with schizophrenia. Gene mutations...gotta love 'em. Thanks, Grandpa. Next year, please get me a pony instead.

I'm trying to avoid a lot of big words in this post because these studies are pretty dense and hard to parse through. The image above, you see, refers to "the medial prefrontal cortex and the posterior cingulate cortex, regions that are associated with self-reflection and autobiographical memories and which become connected into a synchronously active network when the mind is allowed to wander." This may lead to a situation where "neutral external stimuli seem inappropriately self-relevant. For instance, if brain regions whose activity normally signifies self-focus are active while listening to a voice on television, the person may perceive that the voice is speaking directly to them." [ScienceDaily]

I think it's easier to just say that all these differences contribute to a rather sorry state of cognitive affairs: altered circuits and synapses, delusions, hallucinations, electrical abnormalities, and something called "neuropsychological deficits" (think impaired cognitive functions). It's like your brain is on drugs. Because it kinda is...drugs of the self-manufactured, unchecked kind. The neuropsychological deficits deserve a brief mention here because most people don't know about them, and they are super important.

People with schizophrenia experience memory deficits, problems with executive function (such as planning or problem solving), difficulties paying attention, and an impaired awareness of their illness. That last bit is so critical it bears repeating: schizophrenia often affects the part of your brain that controls insight. As a result, many patients lack the cognitive ability to understand what is happening to them. I'd really like to have typed that last sentence in a bolded, 36-point font for emphasis, because that one little factoid is responsible for a world of damage, dysfunction and hurt.

Up to a third of the nation's homeless are mentally ill, and it's not an accident. People assume all the time that this is a 'choice', that schizophrenia patients have 'chosen' not to take medication. It makes me wonder who the crazy ones actually are, because this couldn't be further from the truth. If you cannot understand that you are ill, you cannot make an informed choice about your treatment. This condition is called 'anosognosia', and it can occur in bipolar patients and stroke victims as well.

My mom has a particularly rough case of it, and I know with certainty that if she had any inkling that her brain looked like Swiss cheese she would want someone to do something about it. But she lacks the capacity to do so, and if you don't believe there's anything wrong with you, why would you elect to take any medicine? And there you have it...the reasoning behind a host of preventable tragedies, homelessness, incarceration, revolving hospital doors, and a myriad of social ills, really. It all boils down to the fact that we are treating a bunch of gravely ill people like they're capable of recognizing that they're gravely ill. Newsflash: up to half of them aren't.

We're still in a relative 'Dark Ages' when it comes to understanding the brain. While advances in MRI imaging have definitively settled the question as to whether or not schizophrenia is a legitimate brain disorder, diagnoses are usually issued only on the basis of outwardly observed symptoms. Some people believe that it really represents an umbrella diagnosis, and that in the future there might be multiple names for different diseases that now fall under the schizophrenia label. Scientists have already sussed out five different subtypes, of which the 'paranoid' variety is only one. Investing in more schizophrenia research could benefit society as a whole, as it would likely improve understanding as to how the brain interprets and filters information.

Why

2011-10-20T11:08:00.000-07:00

The family support group meets at night in the basement of an elementary school. Everyone looks a bit worn out, a bit out of place in a room splattered with rainbow alphabets, children's artwork and mobiles strung from the ceiling. The group is perched in a circle, squirming a bit in chairs that were designed for tinier humans. The room is packed tonight because there is a special guest speaker--a genetics researcher on schizophrenia. He is here to recruit families to participate in a new study at his university.

At least that's what he thinks. He can barely get a word in edgewise. The crowd's arms are raised before he's made it through the second slide in his presentation: "My son was hit in the head by a baseball when he was little. Do you think that could have been why he got sick?" "His father was an alcoholic...I've always wondered if that played a part in it?" "We think maybe my grandmother had the disease, too. Will two first degree family members double my risk of inheritance?" "What about diet? My sister always had a bad reaction to [insert any possible food here]..." Our speaker looks rather taken aback and stammers as he tries to shoot down a barrage of unscientific theories.

It is heartbreaking listening to them. So much second-guessing, so much guilt and pain...and so very few answers. Schizophrenia is twice as common as AIDS, but it is much less understood. This probably has something to do with the fact that it receives ten times less research funding. What's more, hardly any studies seem to be performed on the hardest cases--patients lacking insight--because they're unlikely to provide consent in the first place. I'm no expert, but it stands to reason that because of this any research sample sizes have been reduced roughly by half to begin with--the half that happens to be much sicker. It doesn't inspire much confidence. And so, many of us are left grasping at straws.

I can honestly relate to how the whole autism/vaccines myth started because I, too, have been down that road, and I don't recommend it to anyone. The first time I heard about the connection between schizophrenia and toxoplasmosis, I became convinced that mom got sick through gardening. Our neighbors had a free range cat that probably crapped all over our yard. Dad thought it had to do with difficulties during labor, and it took some convincing to get my grandmother to put the earwax (yes, earwax) theory to bed. But all our suspicions, as wild as they sound, were probably far too too simplistic in nature.

Our best current guess is that schizophrenia is a bit like cancer--some of it has to do with genes that leave you more susceptible, and some of it has to do with environmental triggers. Carrying the genes doesn't mean you'll get sick, and not all of the environmental factors will be triggers for everyone. So you're left with a big pile of conjectures and conspiracy theories. Which is pretty ironic, because the one thing most of us are paranoid about is becoming paranoid ourselves.

It's pretty hard to not go there, though. After an exhaustive and mostly unproductive stint of armchair research several years ago, I'd come up with the following checklist for my own personal risk factors:

Parent with illness: check.
Stressful childhood: check. (See: parent with illness.)
Older father: check.
Born in an urban environment: check.
Born in the winter: oh crap.
Maternal depression: I am so screwed.
Epilepsy: not so much.
Toxoplasmosis antibodies: negatory.
Left-handedness: phew.
Marijuana/ LSD use: it's hip to be square.
Heavy alcohol use: only during prolonged exposure to my parents.
Antisocial tendencies: only during prolonged exposure to my parents.

None of this is particularly useful knowledge to have. My mom has managed to defy a lot of the odds--born in the summer, young dad, happy mom, no cats, right-handed, late onset--none of it mattered. Most of the factors being targeted for investigation are beyond our control, anyway. While geneticists have isolated several genes that they believe contribute to the disease, there are no genetic tests available for the public. There is no smoking gun. All the theories and late night reading in the world won't give you any answers--all it does is make you scared of cats and unwilling to eat brownies at social events.

But that doesn't stop the flood of questions here in the school basement, because there is such a strong need to make sense of what's happening. There is such a strong need to feel like you haven't lost all control. The people in this room have family members who are missing, in jail, unable to hold jobs, unable to stay in touch with reality...and they just want to know why. Many of them have never been able to even speak to their relative's doctors. Their hunger for something, anything to point to is almost palpable.

We Interrupt Our Regularly Scheduled Programming...

2011-10-16T21:23:00.000-07:00

Today is Blog Action Day, and bloggers around the world are writing posts focused on a single topic. The goal of the event is to change the conversation on the web and generate attention to a global issue. Each year the topic changes, and this year it concerns food.

It took me awhile to come up with a good connection between food and mental health policy. There are a lot of 'snake oil' supplements and diets on the market that purportedly soothe the symptoms of brain disorders, but most of them don't have any peer-reviewed data to back them up. I have watched other families--close friends, even--sink hundreds of dollars on 'natural' cures, which don't seem to do much beyond raising their hopes and lightening their wallets.

Then I thought about an email I had received two years ago from my cousin's wife. It read, "We saw your mom briefly today. She spoke very briefly to me. Is she on medication? She looks like she has put on a lot of weight, especially around the face and neck. (I think that is why I am associating it with medication.) I probably would not have recognized her if she hadn't recognized me and said something. I recognized her voice before I recognized her face."

For the past five years, my only relationship with my mother has been through third-person accounts like the one above. (Mom #2 decided that she didn't want to be my mom anymore, which is an entirely different story.) One of the known side-effects for antipsychotic medications is weight gain, so it was certainly plausible. The only problem is that two-thirds of people with schizophrenia are living without treatment, and my mother is no exception. So, I wrote her back, thanked her for her concern, and explained that the weight gain that had rendered her unrecognizable was likely due to lack of access to nutritional food.

Like many living with schizophrenia, my mother is unemployed (and, in her current state, unemployable). She lives in public housing, receives food stamps, and makes frequent trips to the local food bank. And, like many people in her economic position, she doesn't have the luxury of eating as many healthy, unprocessed foods. Overstressed food banks are pressured to provide quantity over quality, which tends to favor more items with empty calories. The recession has only made this situation worse.

A study released three months ago by the Trust for America's Health and the Robert Wood Johnson Foundation found that obesity rates were more than 33% for adults who made less than $15,000 a year, but only 24.6% for those making $50,000+ a year. Many critics have argued that this disparity is due to ignorance and/or a preference for unhealthy food. Ellyn Satter, a registered dietician and social worker, has written an excellent article debunking such myths. In response to Maslow's hierarchy of needs, she created a 'Hierarchy of Food Needs' explaining why sometimes other needs come first:

Journal of Nutrition Education & Behavior, 2007

Food quality is one of the factors that contribute to the additional health complications associated with schizophrenia. Approximately 60% of those with the disease will die prematurely from heart disease, diabetes, or other conditions. Many report trouble seeking help for other physical ailments because of lack of health care access and the unwillingness of doctors to take other medical complaints seriously to begin with. This is a small example of how piecemeal approaches and halfhearted stopgaps are seemingly hurting more than they are helping.

Because I live in a different state and she inhabits an alternate state of reality, there is little I can do to address the health concerns my cousin's wife raised. The government has mandated that she has the right to refuse treatment, even when her illness has impaired her physical ability to comprehend what is happening to her. While this would never happen to someone with Alzheimer's who decided to wander in traffic, there is still a ludicrous legal distinction when it comes to my own parent's brain disorder. I have a lot of strong feelings about this, but today I am going to keep things simple. Okay, government: you broke it, you bought it. The least you could do is feed her decently.

A Few of the 'W's

2011-10-14T22:00:00.000-07:00

It's hard to begin a discussion on such a broad-reaching topic without a common knowledge base to work from, so I've created a brief overview below. I've decided to focus on schizophrenia for now because that's what I have the most direct experience with and because it is also one of the most commonly misunderstood illnesses. The media is shockingly adept at producing both positive and negative stereotypes that often distort public impressions of this disease. (Hint: 1 in 10 patients with schizophrenia commit suicide. One in a million receive Nobel Prizes.)

Who
Schizophrenia affects 1% of the world's population, which amounts to about 2.2 million Americans. It is more prevalent than Alzheimer's, MS and insulin-dependent diabetes combined. So how come you don't hear about it more? Maybe it's the same reason cute, fuzzy animals tend to receive better environmental protections--they're more compelling. MS doesn't tend to up your risk of substance abuse or incarceration, and nobody ever writes scary movies about MS patients.

What
Schizophrenia is a chronic, degenerative brain disorder that affects thought processes and emotional responsiveness. It can result in up to 25% of brain tissue loss over a patient's lifetime. This is comparable to the degree of damage caused by Alzheimer's disease, except that unlike Alzheimer's schizophrenia only targets specific areas of the brain. Even though evidence of structural abnormalities in the brain were first detected in the 1970's, schizophrenia has remained misclassified as a psychiatric disorder, perhaps again due to its unpopularity. Mounting evidence has led many researchers and practitioners to believe that the disease ought to be treated by neurologists, not psychiatrists.

It is a complex illness that comes with a lot of caveats. Symptoms can include but are not limited to some or all of the following: hallucinations, paranoid or bizarre delusions, disorganized speech and thinking, and social and occupational dysfunction.

It is NOT...

A psychological problem.
A split personality.*
Curable.

It IS...

A neurological condition.
A split from reality.
Treatable.

*My worst pet peeve is when people use the word 'schizophrenic' as an adjective when they mean to say 'contradictory' or 'nonsensical' instead. Sure, it's widely used...so are a bunch of other objectionable words in the dictionary. Not only does its use promote stigma, but it also promotes misinformation as well. Schizophrenia has nothing to do with split personalities, and one of the main reasons 64% of the public thinks it does is because a famous antisemitic poet incorrectly coined its use back in 1933.

If you really want to use a medical term as a metaphor, the proper word would be something along the lines of 'dissociative-identity-disorder-ish'. Doesn't quite roll off the tongue, does it? A lot of people ask me how they can help improve conditions for people with brain disorders, and one of the easiest things everyone can do is to stop using the word in the wrong context and explain to others why it's inappropriate. Many family members feel that it's on par with using the term 'gay' to mean 'uncool', or 'retarded' to mean 'dumb'. It's just unnecessary.

Where
Schizophrenia occurs worldwide and affects roughly 51 million people on the planet. The WHO has ranked it in the top 10 causes of disability in developed nations. Global prevalence rates are difficult to compare since measuring standards vary quite a bit, but they tend to fall slightly above or below the 1% range. One of the biggest geographical factors is urban environments, which display statistically significant higher rates of prevalence after controlling for population size.

When
This disease is known for striking early in life, usually around adolescence and the early 20's. But what a lot of people don't know is that late-onset cases can also occur, particularly in women. That's what happened to my mom.

All facts not directly cited in this post are sourced from here and here.

Fitting

2011-10-08T02:58:00.000-07:00

When my phone rang yesterday morning, it was still dark out. My alarm wasn't set to go off anytime soon, but alarm bells were ringing nonetheless. I never want to answer the phone that early because I know, deep in my bones, that something must be wrong. I lay in bed for awhile, trying to decide whether or not I should check my voicemail. Once I had mustered up enough resolve, I heard my father's voice crackle through the receiver: "Great news! Your mom's been hospitalized!"

Prepare to take a tumble down a rabbit hole, gentle reader--I am about to introduce you
to a world where up is down, wrong is right, and getting hospitalized means that you're pretty damn lucky. Comparatively speaking, that is. Living with a severe brain disorder rather implies that one has already lost the genetic lottery--securing treatment is a fairly inadequate albeit coveted consolation prize.

But in order to explain things properly, I feel like I ought to introduce you to my mom. I've aged a bit since this photo was taken, but this is how I like to remember her:

Sometimes, it's easier for me to compartmentalize a bit and assign her two different roles: Mom#1 and Mom#2. Mom#1 is my real mom. She's pretty great. She loves reading and dancing and music and nature. She gives great hugs, spins wild tales, and is always up for an adventure. She's also a passionate (and somewhat loudmouthed) champion of causes large and small, and no one likes to go up against her. She has a keen intellect and never backs down. I really miss her. I haven't seen much of Mom#1 since the late nineties. That's when Mom#2 moved in and set up shop, quite without Mom#1's permission, I suspect.

It started so gradually that no one really noticed at first. Everyone knows the signs of a heart attack, but few people recognize the early onset symptoms of schizophrenia. She slept round the clock for over a year and withdrew from most of her social circles. She struggled with personal organization and depression (but then, she'd always been moody). It was weird, but it didn't seem all that alarming. By the time Mom#2 was running the show we were starting to compare notes: Did she seem kinda paranoid to you? What was with the string of job losses? Mom#1 was long gone before we ever got wind of her hearing voices. She was replaced by a scared, angry woman trapped in a sea of neverending nightmares--and I never got to tell her goodbye.

The point of all this is not to wallow, but to explain. I feel like there's so much explaining to do. Our mental health care system is broken, and it's affecting everyone. My family happens to be on the front lines...we have a ringside seat to the show and have a rather unique perspective as a result. When you have a family member with a severe brain disorder, your whole worldview changes. Action movies make you cringe. You can predict developing news stories before they happen. And you'll never hold a homeless person's gaze quite the same way after your own parent has lived on the streets.

The costs of not caring for the most vulnerable members of our society are tearing at our core fabric. There are threads of influence--chain reactions woven rather haphazardly throughout all of our lives--but most of us never see it. When preventable tragedies occur, the public tends to view them in isolation. Very few people connect the dots between a failed legal system, street crime, domestic violence, homelessness, neuroscience, access to health care, suicides, substance abuse, social stigma and overflowing jail cells. And I have a few theories why.

First and foremost, no one's really looking. It requires peering into some of the darkest, scariest parts of our community. The kind of places that get locked up and swept away. Out of sight, out of...mind. And seeing what is truly going on requires getting past some widely held ideas that are often misleading and outdated. If you're not living it, you're quite over your head. Of course, folks have tried before, but nothing much comes of it.

Which leads me to my second theory regarding social blindness: systems aren't that easy to correct. To borrow an idea from Jay Michaelson, the enemy is vague. There's not a sole villain to point to and plugging one hole won't fix the groundswell of leaks. It's hard to develop an overarching narrative to frame all the issues and forces at work in a way that's compelling and keeps the public's interest. [Unless Paul Haggis is shopping new script ideas. Call me!] Absent a kaleidoscopic, Academy Award winning film, that leaves me. Okay, me and Delaney Ruston.

I think I have a story to tell, and I'm going to do my best to tell it. And the reason I'm sticking my virtual neck out on the line is because I truly believe that we have the opportunity to do better. We can do so much better by everyone. Jail cells don't have to be so crowded, the gravely mentally ill don't have to be denied treatment, and families certainly don't have to be torn apart. We can do something about this--I can't, but I think that maybe together we can. I wasn't sure I was ready to talk about this, but I'm also not sure how many more signs the universe can hit me with. My mom's back in the hospital again, and this week happens to be Mental Illness Awareness Week--how fitting.