Tuesday, August 19, 2014

A Plea for Mental Illness Research

Quakers were one of the first groups to clamor for decent treatment for the insane. We demanded that insane asylums were clean and the care of doctors dignified, not condescending or punitive. We crusaded against punishments like leg irons and restraints for mental patients. I hope we might consider redoubling our efforts starting now and going forward into time. Research dollars to come up with new treatments is not cheap.

Because of my struggles with depression, my mother has become very active in NAMI (National Alliance on Mental Illness). She's directly counseled newcomers and regulars attenders to NAMI meetings. This is part of her specialized training, where primarily she tends to those who have children or close family members with mental illness. I've donated to the organization myself every now and again. If this is something you would find helpful to yourself or others, I highly recommend volunteering your time or contributing money.

What follows was originally written for my Meeting and for the several attenders and regulars who deal with chronic illness. Several of them thanked me personally for raising the topic. One woman in her late Fifties is undergoing chemo and radiation. Another is slowly ruling out potential problems before she undergoes a biopsy to determine the state and severity of her own illness. The two of them were thankful for the additional exposure and information that might improve their own medical condition someday.

"I want to thank you for your courage," said the woman undergoing treatment for oncology. I appreciated her compliment, and told her that everyone's struggle was related. I have something of an ulterior motive. Psychiatric studies are, as I noted above, expensive, and many drug companies have sharply curtailed the money for research and development. The 1990's were boom times for new treatments, but since then, not much has been developed.

I have a rapport with those who are struggling mightily with their own medical problems. Many of them feel that they have been passed over or discounted by the rest of the outside world. In the middle of terrifying uncertainty and few concrete answers, I see the weariness in their faces. Unlike some, I have what is referred to as an invisible ailment. I don't need to use a wheelchair. I don't have open wounds. My hair has not fallen out completely due to cancer treatments. If people can't see visible proof of my illness, they think it doesn't exist.

Many people my own age have approached me to speak about their own bouts with depression. One of them gave me a huge, powerful hug, to specify that she understood. It is pleasant to live in a time that, though there may not be a cure yet, people feel comfortable confessing their own struggles, or even the struggles of a spouse of family member. My mother's depression has been present since before I was born, which is partially why she's chosen to spoke to others with mental illness. For many years, she hid her own problems, but found that it was much healthier to work on behalf of others who might otherwise might not have no advocates and allies.


Though it has decreased considerably in the last several years, the stigma of mental illness is still prevalent. Severity of the case is the new baseline. I see it on street corners and at the bus stop. Nearby to where I live, a flower shop stayed vacant for years. A paranoid schizophrenic homeless person moved in and screamed non-stop incoherent gibberish at the top of his lungs. By the time the bank was built, a replacement for the flower shop, he was no longer there. I wonder how they forced him to leave. 

My grandfather, my mother's father, struggled his whole life with undiagnosed bipolar disorder. He was too ashamed to seek treatment. What he had was never to be mentioned by anyone, for any reason. There were periodic times where his depression grew severe enough that he had no choice but to take to bed for days. Two weeks later, he would emerge as though nothing had happened and resume his work. Family members knew to pretend as though nothing had happened.

Years later, I was admitted to a psych ward. One of the people on the same ward as me was a famous stock car driver. He was a local legend in his prime and had been a bold and fearless driver during his career. Now nearly sixty, the working class members of the ward lionized him for past triumphs. The fame didn't do him much good. No way to race if you're too depressed to turn the key in the ignition.

When asked what he was there for, his face took on a pinched, painful quality. I knew that he was probably there either for depression or had been placed on suicide watch. At any case, he could never admit to the nature of his being there, and no one pressed him for it. Many of us were already formulating excuses as to where we'd been and rehearsing them in front of the bathroom mirror during the time we were given to take a shower and for personal grooming.

My great-grandmother was probably schizophrenic, a condition that only worsened when her husband died suddenly and unexpectedly. She never recovered from the shock of his death. Only a few years later, she tried to drown herself in the water tank adjacent to the property, only to be fished out by a servant. Before long, she was sent to an asylum where she never regained her sanity. This, too, was a shameful family secret never to be mentioned.

A couple of years ago, my own life story was published in a book by the author Mark Pinsky and was entitled Amazing Gifts. It was published by the Alban Institute. Mark's book detailed the life of many people with disabilities, not just mental illness, and I was proud to work with a professional like him. Through talking to him, I realized that what I'd experienced was hardly unusual. We all felt that we were the only ones out there with similar problems, but in many ways, we were anything but abnormal.

I am fortunate to live in a time where treatments are more effective and more profuse, but the practice of psychiatry is still very inexact. I take one medication that was developed in 1961. I once took another developed in the late 1950's. Pharmaceutical companies advertise in magazines, television, and on the internet about the latest breakthrough, but we're still not there yet. Research trials that provide nearly instant relief for depression get hung up in medical testing for decades, because of a thousand tiny complications. I gave up on expecting a cure many years ago. The nature of psychiatry is more to reach a sense of proper proportion than anything else.

I know I will always need to take medication the whole of my life, but at least I can manage my care enough that episodes like these are rarities. It's not a foolproof system, but the brain is an organ that reminds me of a map of Africa in 1850, largely uncharted by the Western mind and poorly understood. I could remain in a state of deep frustration and anger, but I've learned over time that this is wasted effort. If a cure isn't in the card, perhaps more effective treatments are. 

Should this be a cause that speaks to you, there will always been a need for your services, and I sincerely thank you. I will be glad to guide you along if you wish to assist. I don't usually ask anyone for money or their time beyond reading my diary, but I hope you will indulge me this time.

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