My Family History of Mental Illness

I remember my grandmother in her baggy dresses that covered every inch of her body like the shrouds that covered the furniture when the summer folk had left for the season. My cousin Heidi was surprised when I told her that my grandmother — her aunt — had spent many hours of each day lying in bed.

“But she was always so jolly, so friendly.”

“Yes,” I said. “She could be like that. Like so many of us she knew how to fake happiness.” I do not mean that as a slander. I admire how she could pull herself together despite her suffering and be there.

I know my grandmother loved me. When I was young, she used to get in big fights with my mother for the way she mistreated me. The rows were long and loud — I would go to the very back of the yard so that I could not hear them.

My mother had her own problems: there was a deep-seated meanness in her. She disparaged my grandmother when we were alone together, complaining about what she thought as Stella’s laziness. When I was depressed, she was panicked at the thought that would do the same, so she hectored me about getting a job — any job — no matter how inappropriate or soul-killing it was. Once, when she was in the hospital with roof-busting high blood pressure, I told the doctor about our family secret. A psychiatrist prescribed Prozac. For three months, she was a nice person.

A Letter to My Illness

You moved in when I was very young, shoved me into your corner, made me cry and when I cried you caused the kids to laugh at me, taunt me saying “Don’t cry Joel.” Sister Annette told me to buck up, to learn to be a man and hold the tears back. Damn you and damn her. I couldn’t say it at the time. Two years of living under the threat of her ruler, but the taunts were worse, hurt worse. The more they called me names, you and my parents reasoned, the stronger I would become but this practice was flawed. I played alone or with other losers. My mother criticized my choice of friends, calling them slow, hinting that they were retarded. Even among them I lived in a shell and the kids continued to wear at my head, trying to produce the streams of salt water they loved so much to see. I don’t know what brought you to make a home in my head. I don’t know why you made me sensitive to the twist in their voices. Was it the arrival of my two cousins who stayed for a year? If it was, you stayed beyond a year, brought me suffering. I looked at Jesus and wondered what was worse: crucifixion or this hell I was going through? If I was on the cross with Him, it was an absurdity.

No matter how beautiful your strategy …

Today was the day of the Meeting of the Minds, the largest mental health conference in Orange County, California. It is an annual conference sponsored by the Mental Health Association, for patients and family (“consumers”), clinicians, and first responders.

This year, we had a table. We arrived at 7am and set up. We were quickly flooded with people making the rounds (memo for next year: bring more literature). By the time of the first session, another member of our chapter had showed up. I went to the session while Joel stayed at the table, just for the first session, he said, but when I got back just before lunch, it turned out that he and the other member had been busy at the table the whole time. I took the table after lunch so they could go to their favorite sessions.

Here is what the talks were like (the ones that I attended).

First session: I went to a panel discussion on Recovery, with the panel coming from a local Wellness Center. The session unfortunately started late, as some people were held up by unexpected traffic, but we did get to hear all four speakers. The first two speakers had suffered horrific child abuse, and then grown up to struggle with mental illness. The second two had come from more supportive families, but faced other troubles and, again, mental illness. But whatever their different paths, a common theme was that recovery involved (besides meds) the support of others, and then giving back that support to others in turn. Some quotes from the last speaker, just for an example:

Instead of praying every day to God for my health, I prayed for my death. What turned it around was NAMI…. I could believe in people the way that people believed in me…. four years sober … believe in people who have mental illness.

Second session: Two psychiatrists from the John Henry Foundation spoke about “Schizophrenia: Cognitive Testing to Enhance Diagnostic and Treatment Options.” “An ab workout for your brain.” Schizophrenia involves positive systems (delusions and hallucinations), and negative symptoms (flat affect and poverty of thought), but also problems in cognition: processing of information, flexible thinking, and memory. There are medications for positive symptoms, and even some medications for negative symptoms, for for cognitive deficits, the speakers said, you need something else. The John Henry Foundation uses cognitive testing to evaluate people’s abilities in seven domains: Processing Speed, Attention, Working Memory, Verbal Learning, Visual Learning, Problem Solving, and Social Cognition. Once your weak areas are identified, you can build them through simple cognitive exercises, done daily. We got taken through some games that tested us in each area. (I appear to be way better at processing speed and working memory than at visual memory.) These exercises can be useful not just for people with schizophrenia but for anyone. Even neurotypical people can use them to build their weak areas, and people with other DSM diagnoses, such as ADD or borderline personality disorder, can use them (for example, exercises that help with attention for people with ADD, and meditation or exercises that help with emotional gating for people with borderline personality disorder).

As I didn’t go to the afternoon session, the final talk I heard was the keynote address right after lunch, “Dream with your Eyes Open,” by Eric Arauz, who went from the childhood trauma of seeing his family unravel when his father became mentally ill, to repeating his father’s mental illness, to, unlike his father, finding his way to recovery. Now he is the president of the Trauma Institute of New Jersey, and also an impressive public speaker, going by his keynote address. I got a copy of his book for our chapter, which I’ll read and hope to review later. My title comes from a line in his talk that struck me: “No matter how beautiful your strategy, you have to eventually look at the outcomes.” For Arauz, that outcome involved moving from what he calls a “Chaos Narrative: No Map or Destination” to one that rewrote his story in a more positive way.

 

What Does it Take to Make a Diagnosis?

There are a couple of people who sometimes respond to my threads who don’t like it when I say we shouldn’t be calling people mentally ill just because we don’t like them or act in ways that we don’t like. I think it is time for me to outline what is required to make a diagnosis:

  • You have to be trained as a psychiatrist or a clinical psychologist. (Most “experts” or the “peanut crunching crowd” are not.)
  • You have to have actually examined the person. This goes beyond watching them on television or reading about them in magazines or newspapers.
  • You have to use proper diagnostic criteria.
  • You must be neutral. Most of the pseudo-diagnoses that I have seen fail magnificently on this score. In my experience, progressives are the worst, but this does not exonerate others including conservatives.
  • You must have the patient’s welfare in mind, not an opportunity to insult.
  • You must avoid stigmatizing people with mental illness who are not anything like the person you are diagnosing. E.g. By saying that terrorists are mentally ill, you are implying that people who are mentally ill are like terrorists. (Research shows that people with mental illness are less likely to be violent than the normal population.

Dealing with anxiety over the holidays

I wrote another article for “The Mighty” that I wanted to share

http://themighty.com/2015/12/7-tips-for-surviving-the-holidays-when-you-live-with-anxiety/

At my house, we celebrate both Christmas and Hanukkah. The kids love it; twice the parties, more gifts and more fun. But for me, this means twice the stress and more anxiety. And while most of the severe symptoms of my mental illness are under control, it can be harder to manage my anxiety as the holidays approach.

But I’ve learned little adjustments can make a huge difference. Here are some things that help reduce my anxiety over the holidays:

1. Take two cars to a holiday party.

It’s easier to relax when I know I have an exit plan. If my husband and I take separate cars to an event, I know I can leave at any time.

2. Find a “safe space.”

When we’re at a holiday party or family gathering, I make sure I find a quieter room or place outside to get away from all the noise. Or I spend time with the animals if there are any pets. It just needs to be a space where I can recharge.

3. Give yourself permission to walk away from upsetting conversations.

There’s always that one person who wants to argue about politics or compare achievements. I used to dread holidays mainly because of these uncomfortable interactions. Now, I know I don’t have to listen. I can walk away or not participate.

4. Keep it low-key.

In my house, we don’t feel pressure to entertain guests or worry about buying the “perfect gift.” There’s so much going on already, we don’t want to add to the stress by holding unrealistic expectations. We try to keep it low-pressure and enjoy what we have.

5. Know it’s OK to say, “No.”

Around the holidays there are lots of opportunities to help others, but if making that batch of cookies or running that errand is going to cause me too much stress, I have started saying no. The holidays are a time to give, but it’s important to know your limits.

6. Accept help.

On the other hand, if people do offer me help, I’ve learned it’s OK to accept it. I try to remind myself they wouldn’t ask if they weren’t willing.

7. Remember to actually enjoy yourself.

As much as there are parts about holiday gatherings I don’t enjoy, there are things I like. Certain foods, smells, people and seeing the children’s excitement. I try to enjoy those special moments — it keeps the holidays in perspective.

Madness in Senegal

I wasn’t able to arrange any interviews. The doctors in the Senegalese mental hospitals were defensive, fearful that I would paint a bad picture of conditions, or busy. The assurances of the State Department staff who were helping me didn’t sooth this naive patriotism or persuade them to give me half an hour, but I learned a little. There’s no social security in Senegal, so the mentally ill either rely on the care of their family or begging. I didn’t see many people who struck me as being afflicted on the streets (unlike London and Paris), so I assumed that they had been assimilated into the crowd and received care of sorts from other dwellers of Dakar’s streets.

The luckier among the mentally ill receive support from their families who send them to mental institutions where they receive treatment in the form of psychotropics. These help as long as the money holds out — a familiar story to those of us who remember the dark days before Obamacare. I can’t tell you about the conditions in the hospitals; so, I don’t know if they followed the best standards of care or if they were dank prisons where patients were chained or locked into padded cells.

Mental illness is recognized even in the more remote and traditional areas, which refutes the myth that people in Africa regard people living with schizophrenia and bipolar disorder as holy. Instead, they are ostracized and feared — as they have always been.

Most of the mentally ill disappear into the mass of people walking the streets of this city. They are ignored and forgotten, their symptoms shrugged off which is not the reverence of the myth makers. There’s rumor of an American in one of the suburbs who is in episode; there is no retrieving him and taking him home, however, because he will not come into the embassy for evaluation.

If I stayed around, I might see more; time is running out, however.

What could go wrong?

FDA asked to consider adherence sensor on Abilify

http://www.modernhealthcare.com/article/20150910/NEWS/150919997

http://www.proteus.com/press-releases/u-s-fda-accepts-first-digital-medicine-new-drug-application-for-otsuka-and-proteus-digital-health/

Proteus Health, located in Redwood City CA, along with Tokyo based Otsuka Pharmaceutical Co. have a new drug application that is ready for review by regulators determined by the FDA.

The new drug is embedded with an ingestible sensor. When the medication, and sensor, reach the stomach, it sends a signal to a patch the patient wears externally. The information can be sent to physicians or caregivers with consent.

The sensor has previously been approved in a placebo taken along with a medication.

The goal is to help with medication compliance. All well and good up to this point. But, what is the first drug they choose? Abilify, an atypical anti-psychotic. It isn’t always taken for psychosis. It can be used as an add-on for depression and other ways. But, it is also used to treat psychosis.

Some, not uncommon, delusions are that:

you have sensors embedded, that your medicine has been poisoned or tampered with or that people are tracking you. This is to be taken by consent, but personally, I think they chose a bad medication.

I don’t know what is wrong with injectable abilify? That would be my choice.

 

Review: An Angel at My Table

Janet Frame endured eight years as a mental patient before she went on to become the poet laureate of New Zealand. She was misdiagnosed. While she was incarcerated she underwent electro-convulsive therapy without anesthesia and was lined up for a lobotomy until her doctor learned that she had won a prestigious literary prize and took her off the list. This movie is the story of three periods in her life. Her time in a mental hospital is the second.

I would guess that social anxiety and, perhaps, depression were the demons that afflicted Frame. She would hide in corners. She failed at her work as a teacher. When two of her sisters died, she crashed into a frozen despair.

If Angel at My Table is accurate, Frame was most certainly not schizophrenic. An early scene in the second part of the film shows her riding to the hospital in a car with two women who are severely impaired by their illnesses. She stands out as unafflicted by whatever is troubling her fellow passengers. Things were done to her while she was in the hospital just because they were the latest treatment. Her mother desperately signed the papers for the lobotomy: if Frame had been trapped in a mindless system, we would have lost a great author. Fortunately, a doctor noticed in time and helped her win her release.

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Should I Have Intervened?

My first year of college I was taking a math class. I noticed a boy who sat in my front of me had friends he would laugh and talk with. And one day I got a glance, it just caught my eye, of some cuts on his wrist. He found ways to hide them, but every now and again I’d see a glimmer of them.

And I wondered for weeks if I should say something.

I considered going up to him, pulling my sleeve up and say, “I do it too.”

I thought about how I wouldn’t want anyone to call me out on it if they saw my own.

I thought about how hard he tried to hide it and so I should respect that.

I thought about whether intervening was something I should do for his safety.

But I was in the middle of my own battle with self injury.

And I never did anything.

And I can never get it out of mind…

I never did or say anything to him.

Should I have?

-Quinn

The Night of The Cut *Graphic Self Harm Trigger Warning*

******TRIGGER WARNING: Anorexia somewhat and EXTREMELY GRAPHIC SELF HARM******

DO NOT READ THIS IF YOU ARE EASILY TRIGGERED BY SELF HARM ESPECIALLY IN GRAPHIC DETAIL.

You have been warned.

This is probably the single most important story in my life. It led to a cascade of events: hospitalization, my correct diagnosis of bipolar, getting kicked out of school, and finally getting the real help I needed.

It was 6am when I finally asked my ex-boyfriend for my knife back. We aren’t on speaking terms and we are clear that we can never be. We’re either together or not. And together is awful, dangerous, addicting, full of love, full of hate.

Today I see him to get it back, so I stress out about it of course. I overthink what I will wear. I felt the need to show him how much my appearance has changed, how much have changed. Both of which are major improvements.

Should I go laid back in my cute dorm-room college girl get up all from Victoria’s Secret? Or should I go with my traditional assemble which people describe as “edgy” because its boots and leather jackets and what not?
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