A Baffled Look

The straight dope on mental health

Category: Uncategorized

The Real Crazies

While I was watching some DVDs about the Holocaust I got an idea about how the Nazis euthanized people with mental illnesses. It made me wonder if physician assisted suicide could lead to people who can’t take care of themselves being euthanized as an official policy like it happened in Nazi Germany. In 2006, the Swiss Supreme Court ruled that mentally ill people can have access to physician assisted suicide. I found a lot on this online from many sides of the issue. The logic goes that since mental illnesses are accepted as biologically based mentally ill people should have the same options available as terminally ill people. If the mentally ill person is deemed in temporary remission from a chronic, debilitating mental disorder then they should be considered rational enough to be assisted in killing themselves. A lot of physicians, especially psychiatrists, see this as anathema. For psychiatrists, suicide is failure. What happened to “First, do no harm.”? Moreover, some people with terminal illnesses are depressed. Some articles were alarmed – including an editorial on MindFreedom International’s website. Many consider all physician assisted suicides a “slippery slope.” Will it lead to patients being encouraged to die so they are no longer a burden to society? In Nazi Germany, mentally and physically disabled people were exterminated for this reason. Many psychiatrists report that one consultation with a person who wants physician assisted suicide is not enough to determine if someone is rational enough to go through with a permanent solution for their suffering. Oregon has a law permitting physician assisted suicide for terminal illnesses, but now that intractable mental illnesses are viewed as biologically based, will the mentally ill have the same “rights” as the terminally ill? According to a Medscape article, “we are entering an era during which psychiatric patients do not need to be protected, but empowered. Our goal should be to maximize the options available to the mentally ill.” From a civil liberties perspective this seems logical, but mental illnesses distort reasoning. Should someone with impaired judgment be “empowered” or should they be helped to overcome their condition? Even MindFreedom International sees access to physician assisted suicide for mentally ill people as having potential to lead to coerced or forced euthanasia of those labeled mentally ill. MindFreedom usually supports civil liberties for persons with a mental illness.
If someone with a mental illness wants to kill himself, he will find a way without the help of a physician. There’s a libertarian type reasoning to some of these articles – a cold appraisal similar to the Nazi’s reasoning that those who can’t work and care for their survival shouldn’t be allowed to be a “burden to society.”
According to a 2002 article in the British Journal of Psychiatry, there are no clinical criteria to guide such an assessment for determining the rationality of the right to physician assisted suicide. It seems crazy that physician assisted suicide be available to the mentally ill – especially if there is no standard for a “rational” decision. Mental illnesses may be biologically based, but it affects your brain, where you need to think rationally enough to make an informed decision.

Affordable Treatment

It’s hard to separate advice on how to cope from political realities such as lack of access to affordable treatment.
According to an Orlando Sentinel article, my county mental health provider no longer treats people without insurance because of budget cuts. There is a clinic run by the local chapter of Mental Health America that treats people without insurance, but these people have to have another health condition like diabetes and even then the clinic can only treat 200 people. There’s a long waiting list. The current austerity measures will only make things worse.
Drug companies are making things worse for the uninsured. The uninsured have to pay higher costs because they don’t have an insurance company or the state to negotiate lower prices for them. I could go on and on about the drug companies, but that’s for another post.
That said, at least you can get free medicine through drug company patient assistance programs. It really helped me stay sane when I was getting my BA, but I still had to pay the doctor. You can get free samples from your doctor too. There are a few psychiatrists in my community who don’t take insurance and have a sliding scale for payment. They’re few and far between, but it’s worth looking into. Call your local NAMI chapter or your local Mental Health America to find one.
State & federal politicians are too busy cutting taxes that fund mental health treatment and the insurance companies lobby against better treatment because it costs them more. So, if there’s less money to fund community mental providers then we need more efficiency for the funds provided for treatment, right? Community mental health providers, however, have been so underfunded that they’re stretched to the max. Peer support groups help some, but it’s no substitute for getting professional help.
There are some possibilities to get free treatment for uninsured people. Back when I was in college I was hospitalized and had a huge bill. I looked into getting the bill forgiven. I asked the billing department for an application. The woman I talked to referred me to her manager because she knew nothing about it. The manager sent me a form. I filled it out, sent it in & my bill was forgiven. So if you have a huge hospital bill and you’re indigent, appeal to the hospital billing department & speak to a manager.
Another option for free or low cost hospital or health care facilities is Hill Burton facilities. Back in 1946 congress passed a law giving funds to health facilities and in return these facilities had to offer free or low cost treatment. When you go there, go to the business office and ask for an Individual Notice. This will tell you about income requirements and where to go next. Ask for a Hill Burton form and be sure to bring pay stubs or some other kind of proof of income. If you are asked to apply for Medicaid or Medicare, do so. Ask for a Determination of Eligibility and how long it will be to be notified whether you qualify or not.
I wish I could offer more advice, but I can’t think of anything else right now.

Choke

In Chuck Palahniuk’s novel Choke, the main character, Victor, goes to high end restaurants and pretends to choke on his food because he wants the care and concern he didn’t get as a child from his mentally ill mother. He claims he does it because the people who save him keep in touch and send him money so he can pay for his mother’s care in a nursing home for people with dementia and/or mental illness. So he goes through his whole life taking care of his mother, who didn’t have custody of him while he grew up because of the legal problems his mother had as a result of her illness. Victor’s mother finds him throughout his childhood in foster care and covertly arranges for them to meet. She expects him to believe her ideas of reference, which in her case are delusions that every time she hears an announcement over an intercom in stores or airports they are specifically communicating to her. Victor becomes a sex addict because he didn’t learn to have normal relationships growing up because his mother insisted on keeping their interactions with each other a secret. Victor misses out on developing trusting relationships. It increases the shame he already feels about his mother. His sex addiction is a secretive activity just like meetings with his mother were when he was a child. He tries to find out more about his mother’s past in the diary she kept before he was born, but it’s written in Italian so he can’t read it. According to a National Institute of Health article children who grow up with a mentally ill parent search for an explanation for their parent’s behavior. Victor grew up anxious and confused because he couldn’t categorize or comprehend his mother’s problems. His clandestine meetings with his mother made it difficult for him to communicate with others because he had the impression that he wasn’t allowed to discuss his mother’s problems with anyone. He was afraid betraying his mother if he spoke to persons outside his family about her illness. Since he grew up with no one to talk to about his mother he was abandoned to himself.

An organization created to help adult children of a mentally ill parent, Band Back Together, reveals that people like Victor are an example of the isolation and failure to develop healthy relationships that linger in adulthood.

On the National Alliance on Mental Illness’ website, there are ways to mitigate the damage of growing up with a mentally ill parent. In real life, there are suggestions to help people like Victor. I hope these suggestions help those of you who grew up with this predicament.
It’s not your fault.
Mental illness affects the whole family.
If you feel resentment towards your parent, you are giving too much.
In spite of your best efforts the illness may worsen.
Delusions have nothing to do with you and do not require discussion.
Acceptance is helpful, but not necessary.
Try to separate your parent from their illness.
You have needs too and neglect is not ok.
You may have to reassess your expectations.
It’s ok to grieve about what you never had.
You may need professional help learning about setting appropriate boundaries with others.
Don’t take the manifestations of the illness personally.
The needs of your ill parent don’t always come first.
If you don’t take care of yourself first, then you can’t take care of others.

Word Salad World

I started another blog called “Word Salad World” about Pathways Drop-In Center in Orlando, Florida where I used to work. Pathways is a drop-in center that serves the mentally ill, most of whom are on Social Security and about half of whom are homeless. Pathways offers its members a wide array of services including a meal, computers with internet access, an address if they are homeless, showers, a washer and dryer, TV, a phone and a pool table. Pathways also has a half dozen apartments for a lucky few of its members. I named the blog “Word Salad World” because a word salad is speech in which words that are unrelated are strung together in a sentence. It’s incomprehensible speech that sometimes occurs as a symptom of a psychotic disorder. My original intention for this blog was to empower the members of Pathways to tell their stories in their own words and artwork about what their lives are like.
I got involved with Pathways as a board member while I was pursuing my BA. When I graduated I took a job there as a general manager and worked there for two years. I have bipolar disorder so I have some idea about what its members go through on a day to day basis. I want to give them a voice with this blog and educate people about what it’s really like to be mentally ill and desperately poor.
I’ve started a weekly art workshop at Pathways where members can use a variety of art mediums to express themselves. I started doing this last week. I originally wanted to feature writings and artwork from members about what their lives are like, but after being away from Pathways for seven years few members know me and they are wary. I don’t blame them. Who am I, some stranger asking them to bare deeply personal accounts a few minutes after meeting them? It’s going to take time building their trust, but I’ve discovered that the participants don’t feel comfortable writing. They would rather color, draw or make collages than put a description of their lives onto a piece of paper. So I’ll chronicle what happens each week and post their artwork.
I use pseudonyms and omit identifying information from their stories in order to protect their privacy. I hope this blog will raise awareness of people who are often shunned and silenced.

You don’t know what you’re talking about

This week I’ve had two people suggest that a spiritual approach like meditation and mindfulness will cure me of my need for psychiatric medication. I practice meditation every day. I go to yoga classes when I can and they have reduced my anxiety. Both of these people have PTSD and I know that they only meant to help and these practices do help people with PTSD and other anxiety disorders, but my bipolar disorder is a whole different animal. I’ve tried to go without medication several times in my life and tried a holistic approach and each time it landed me in the hospital.
This idea that if I only tried harder this “spiritual” approach would work, which means it’s my fault that I’m not cured. I have had a spiritual awakening through my love for my husband. It helps, but it didn’t cure me. I’ve heard this argument a lot of times – in 12 step meetings, discussion boards, from proselytizers, and from people who smoke pot. They’re all clueless. And I’m not defending the abysmal history of psychiatry or the greedy, exploitative drug companies. Everyone has their own path and right now my mood stabilizer works for me. Just because it works for me doesn’t mean I believe it works for others and I would like others to treat me with the respect I show towards them and their own choices. Everyone is different and I’m tired of these over generalized judgments towards my choice of seeking psychiatric treatment. I just don’t understand why these people judge others who make different choices than they do. It’s disrespectful and it’s not going to make me more open to their approach if I’m being judged harshly for my choice to take a mood stabilizer. It works for me most of the time so why not leave me alone and show me some respect? I’m not really angry. They seem genuinely sincere and are only trying to help. And my psychiatrist has suggested several times that I meditate and practice yoga and cut down on my consumption of caffeine so I can have less anxiety and cope better. So not all shrinks are pill pushers.
It increases stigma to suggest that I should replace medication with some sort of “spiritual” approach. Am I supposed to not take antibiotics when I have a lung infection? I’m tired of it and have had enough. Sure some therapies change your brain – particularly cognitive behavioral therapy. But being told that some kind of “spiritual” approach will cure my bipolar disorder suggests that my illness is my fault.
Everyone is different and this one size fits all attitude towards mental illness is both misguided and dangerous. I had a friend who bought into this bullshit of not taking medication and he ended up killing himself. The last time I saw him at my bipolar support group he told me of his disdain for the other members who took medication. I told him to mind his own fucking business. That’s the last thing I said to him. I should’ve asked him to explain his position and not judge him as he was judging everyone else at the meeting, but I became defensive and missed that opportunity and I have to live with that the rest of my life. I don’t know if medication would’ve helped, but it may have spared him his life.

Assisted Living Nightmares

I found an article in the Miami Herald about the horrible conditions & lack of regulatory oversight for Assisted Living Facilities (ALFs) in Florida. ALFs are supposed to serve the elderly and disabled, including the mentally ill. I’m trying to understand the incentives that make the police and the regulatory agencies not get involved with the abuse and neglect of residents who are injured or die as a result. The people running these abusive ALFs should be charged with assault or manslaughter. But it’s hard to make arrests or impose fines when an abusive ALF falsifies records as in the case with some of these facilities. It’s no wonder the folks at the drop-in center where I used to work prefer the streets to ALFs and homeless shelters. I remember when I interviewed one man at the drop-in center a few years ago he said he left the ALF he was living in because it was so abusive that he’d rather be homeless. So jails, and ALFs are the new asylums.

The Miami Herald did a wonderful job exposing the abuses at the ALFs. The articles about it were timely because the Florida legislature refuses to add more regulatory oversight for ALFs. People at ALFs aren’t well enough to vote so no one in the legislature has the incentive to improve the system. Florida State Senator Alan Hays of Umatilla states, “Many of these facilities are already strapped; they’re trying to balance quality care with their staffing needs and that sort of thing…I don’t want to do anything to take away from their ability to care for their residents.”

I’ve heard this one before. Somehow laws that increase oversight and accountability are interfering with care. I hear it again and again. The reason conditions are so terrible is because the owners of these facilities make more money by providing less care. It’s business as usual. According to the Herald’s article, the ALFs are guaranteed an average of $674 a month from Social Security and a daily stipend of $9.28 for residents with mental illnesses. So that comes to about $952.40 a month for each mentally ill resident. It’s not much so the owners have an incentive to provide fewer services in order to make more money.

The Florida Agency for Health Care Administration (AHCA) is the regulatory agency responsible for overseeing ALFs. They used to have strict standards that were once one of the most regulated in the country. The Miami Herald reports that “as the industry boomed, AHCA failed to keep up with the growth, with state agents taking longer to respond to dangerous breakdowns. A Miami Herald analysis shows it took inspectors an average of 37 days to complete complaint investigations in 2009, 10 days longer than five years earlier.”

If the laws are not funded they are difficult to enforce. ALFs are inspected once every 2 years. They could improve their funds through fines, but it costs the state even more to relocate residents if they shut a facility down. The Department of Children and Families (DCF) investigates abuse at these facilities, but unlike AHCA, they don’t have the authority to fine or shut these places down. AHCA is in charge of the Medicaid programs in Florida. An article by Reuters states that the Florida legislature refuses to accept funds from the federal government to expand Medicaid. And nowadays the regulations have been gutted to the point where the only requirements for running an ALF are a high school education and 26 hours of training.

It’s a good idea to look up inspection reports on AHCA’s website. View this video on how to look up ratings and inspection reports for Florida’s Assisted Living Facilities.

And if things weren’t bad enough, there’s another reason to look up Assisted Living Facilities on AHCA’s website. Some facilities claiming to be ALFs aren’t licensed. AHCA’s website lists licensed ALFs in your area so if an ALF isn’t listed on AHCA’s website, it’s probably not licensed.
The incentive behind all this is greed, pure and simple.

Fat, Starving and Crazy

In a previous post I mentioned that the antipsychotic Zyprexa made me gain 45 pounds. Many psych meds cause weight gain. A lot of the folks at the drop-in center where I used to work are obese in spite of their lack of money to feed themselves (the drop-in center serves food and provides many amenities such as a place to shower). These days, poor people are more likely to be obese because they lack money to buy fruits, vegetables and unprocessed foods. Junk food in poor areas is cheap and there are few stores that sell fresh fruits and vegetables. These neighborhoods have no grocery stores and even if they did the fresh food is too expensive for them. The people that frequent the drop-in center often run out of food stamps and money to last through the end of the month.

Metabolic syndrome, which causes the inability to process glucose, can be caused by some antipsychotics. Poor diet can also cause metabolic syndrome so the folks at the drop-in center have a double whammy to deal with. Severely mentally ill people live shorter lives partly because they are usually too poor to eat properly and because of the metabolic syndrome caused by their medicines make it very difficult to lose weight.

So the folks at the drop-in center don’t get the nutrients they need from junk food so even though they are fat they’re malnourished. According to the Huffington Post, lack of proper nutrients in junk food harms metabolism and makes your body want to eat more because it’s not getting the nutrients it needs. Wired magazine has an article about obesity and homelessness in Boston. One in three of the homeless population in Boston is obese and malnourished. By malnourished I mean they aren’t getting enough nutrients. Another thing, some psych meds make you hungry all the time. Imagine feeling hungry all the time and not having enough food to eat. It must be torture. Their neighborhoods are too dangerous to go outdoors and walk. The meals at the drop-in center where I worked are fairly nutritious, but they have to buy cheap food in order to stretch out their food budget. I remember those huge, gallon sized cans of vegetables they used. They are also constrained on having enough time to get the food cooked by the time they open at 11 am. So they have to rely on processed food that’s quick to make and will store for weeks.

I read a New York Times article about how food is engineered to entice people to eat more. These foods are made so people crave them. According to the article, this condition is known as “sensory-specific satiety.” It means that there is a tendency for prominent, distinct flavors to overwhelm the brain, which makes you feel like eating less. Sensory-specific satiety became a holy grail for the processed-food industry. They use complex formulas that stimulate the taste buds enough to appeal to a person’s appetite but don’t have a distinct, overwhelming, single flavor that tells the brain to stop eating.

Mentally ill people are already stigmatized enough for their illnesses. They don’t need more isolation from others because they are judged by others even more for being fat.

A Dubious Marriage

A lot of people have a romanticized notion that there’s an advantageous link between mental illness and creativity. The Pulitzer Prize winning novelist William Styron, author of The Confessions of Nat Turner and Sophie’s Choice, experienced major depressive disorder. The notion that he was some kind of tortured artist whose madness fed his work minimizes the tragedy of his later years. For the last 27 years of his life he didn’t complete a novel that he had been trying to write during most of his adult life. Writing novels was the thing he loved most. It wasn’t for lack of trying. He wrote plenty of drafts that he didn’t finish and had he felt better who knows what his genius would’ve produced. Mental illness robbed him. In his daughter Alexandra Styron’s memoir Reading My Father Alexandra believed not writing made him depressed, but his editor of 47 years said it was the other way around. Depression kept him from finishing the novel that was most important to him.
Styron’s major depression occurred rather late in his life – at age 60 – soon after he quit drinking alcohol. He wrote a short memoir of his first bout of depression called Darkness Visible: A Memoir of Madness which was published in 1990. He received an overwhelming response and he wrote back most of the people who wrote him. He didn’t become depressed again until 15 years later.
The end of Alexandra Styron’s memoir of her father is excruciating to read. He was very sensitive to the side effects of the antidepressant medicines his doctors prescribed him. He tried ECT, but after a few treatments he became so psychotic he had to be hospitalized. In the hospital he became too paranoid and delusional to comply with more ECT treatment.
The studies exploring the link between mental illness and creativity contradict each other and we’ll never know the truth about the link until they standardize the criteria for creativity. And I’m not really saying that the tortured artist cliché isn’t true. I’m saying mental illness eventually robs them of their ability to work. It destroys careers.
The poet and novelist Sylvia Plath experienced major depression also. Her autobiographical novel The Bell Jar chronicles the events leading up to Plath’s attempted suicide and subsequent hospitalization. It’s as powerful a portrayal of severe depression as Styron’s Darkness Visible. Plath killed herself at age thirty soon after writing her best poems which were later were published posthumously titled Ariel. In contrast to William Styron, Plath’s first bout with depression occurred at age 19 and in Plath’s final days were productive. Who knows what she would have written had she not committed suicide at such a young age. Like Styron, Plath’s severe depression robbed her. The dubious notion that mental illness enhances creative work is pure fantasy. Depression destroyed William Styron and Sylvia Plath.

The Road

I’m reposting this because I don’t like what I posted Friday this bears repeating.

I just finished reading Cormac McCarthy’s The Road. The novel portrays a post apocalypse America and a man and his son struggle to survive. Their lives are consumed with finding food and shelter and staying out of danger. I wonder if McCarthy used the plight of the homeless to inform his readers on what it would take to survive in the novel’s setting.

The protagonist and his son even use a shopping cart to move their meager possessions. It’s a symbol of plenty in an age of scarcity. A lot of homeless people use shopping carts. They are constantly searching for their next meal as the characters do in the novel. The people the protagonist and his son run into are dangerous. They have to be constantly vigilant of being robbed or having their provisions stolen. The man and the boy have to hide their shopping cart so they can sleep without losing their stuff. Like the homeless, they risk everything when they sleep. They avoid contact with other people because they can’t trust others. In the novel, the man and the boy avoid houses and towns because they may harbor dangerous people. The homeless people at the drop-in center where I used to work avoid homeless shelters and assisted living facilities because it’s too dangerous. Like the novel, the folks at the drop-in center experience constant obstacles to getting their basic needs met. Like the homeless, the man and boy in the novel have few opportunities to attend to basic hygiene.

In the book, the cities and towns are abandoned because of some kind of apocalypse, but homeless people live that apocalypse every day and their numbers are growing. There are no authorities left anymore in the book and there are none for the homeless today. They can’t trust the cops and most of the folks still lucky enough to have a place to live don’t want them around so the homeless are in effect without protection. Imagine how much worse it is for someone already tormented by their own perceptions to also live in a kind of hell on earth. I sometimes wonder which came first for the clients of the drop-in center, homelessness or mental illness.

The Road won the Pulitzer Prize. It’s gripping and McCarthy’s prose is beautiful. If you want to walk in the shoes of a homeless person this is the book to read.

All I wanted was a little fun

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Many years ago a friend of mine and I were canoeing along Florida’s Wekiva River and decided to take a detour down a dense tributary. We encountered a partially submerged log that blocked our path. My friend and I got out of the canoe and lifted it up to our chests as we stepped over the log. I examined the pattern in the bark and admired how the two most prominent and regular features formed parallel lines down opposite sides of the log. It was this consistency in the features that prompted me to realize that I was not looking at a log. I was looking at an alligator’s tail. The thickest portion at the water’s surface was about ten inches in diameter.

So what did I learn? If you’re going to venture off the beaten path, then pay attention.

It didn’t help that when I went on the canoe outing I mentioned above that I was – how should I put this – let’s just say I was in an altered state. My friend and I thought it would make us more “aware” of our surroundings. That it obviously didn’t was completely lost on me at the time. The lesson from the alligator didn’t sink in until many years later.

For several years I did what a lot of people like me do: I self-medicated. Almost as soon as I started drinking and smoking pot, it became a daily ritual. I began to experiment with everything I could get my hands on. I started dying clothes I bought at thrift stores in loud, clashing colors. I sewed plastic ants on my clothes. I believed I was an incarnation of the Dada art movement’s Marcel Duchamp. The way I saw it, substances made me feel better and helped me fit in. I didn’t notice that the people I surrounded myself with grew more marginalized and violent. I really thought I was completely original and had escaped the stifling existence as a corporate lackey that so many of my public high school cohorts had embraced. I have since learned that people in a manic state will dress bizarrely and often have grandiose delusions (like believing they are an incarnation of someone famous or of historical significance). For a long time I didn’t see my bizarre dress and delusions as a symptom. I had no idea that I was ill so it wasn’t my fault. I sensed vaguely that something was wrong, but had no idea what it was.

Now I have no such excuse. I have to pay attention to my symptoms to avoid trouble. My illness puts me off the path that most people follow. I was afraid if I took medication I would lose my creativity. That hasn’t happened. I have much more focus and discipline and, unlike the old days, I finish what I start. I try not to judge myself for the things I did before being diagnosed with bipolar disorder, but I have to pay attention and be honest with myself about the typical symptoms I experience that could be an indication of relapse. It sucks to constantly evaluate my thoughts and behavior but it’s better than experiencing a relapse.