Wednesday, October 23, 2013

The first post on this blog

This was the first post on Hopeworks Community.It was written years ago and started everything.

A Culture of Disregard:Life on the ward.

My wife was recently a patient on a psychiatric ward. The first night she went to get her seizure medication. One of the medicines--lyrica--was not there. When she asked for it she was told, "No, you can't have it. It's not an anticonvulsant. It is a pain medication." When Linda protested and told them she had been taking it for 8 months and it had been prescribed by her neurologist she was told, "It doesn't matter what outside doctors say, only inside doctors." The incident while extreme, illustrates a truth common to the experience of many psychiatric patients. The message is given to them everyday in many ways: " What you think, what you know, what you want is not nearly as important as what we think, what we know, and what we want you to do." There exists in many psychiatric wards a culture of disregard, a system of beliefs and practices, sometimes unspoken, but always there, which legitimizes the power of one person over another, and excuses much of what he does as being for the "good" of the other.

The discussion below is borne primarily of my wife's experience on one ward. I am not saying that the criticisms I make are necessarily true of all psychiatric wards. It is not the way they must be. I am saying that what was true of Linda's ward is true to some degree of too many other wards. I have worked for 35 years in the mental health field, both in and out of psychiatric hospitals. I have known and worked with many caring and dedicated people. In describing my wife's experience though I have had to re-look at much of my own. Much of what I have seen is more than a little uncomfortable. Too many people leave psychiatric programs diminished by the experience. They walk away convinced that life will probably never get better and if anything is only likely to get worse.

When treatment programs work they help patients to find hope. Without some sense of hope not much else really does work. Treatment is supposed to tell people who believe life is too hard and that nothing is likely to make much of a difference that they are wrong. For many patients hard times have been a constant companion and seem, regardless of what they do or how hard they try, a certain destiny. Patients should leave the program feeling like they have "more" than they came in with. Treatment should open opportunity, not deepen deprivation.

Hope was one of the first casualties on Linda's ward. All relationships on the ward were based on power. The staff had it. The patients didn't. Linda described to me the ritual of going to the nurse's station to get meds or personal needs met. Patients would go to the nurses station and wait to be noticed. This usually took several minutes since the staff was often "busy" talking to each other. During the 7 days that she was there Linda told me that she did not remember a single time when a staff member saw a patient coming, anticipated the need and talked to them without first making them wait.

This gives a clear message. If your needs must wait on my convenience then you really don't matter much. Patients learned quickly that your value was defined by the staff. Follow the rules, be where you are supposed to be, do what you are supposed to do, and above all else, don't cause any trouble. That is what it meant to be a good patient. Fitting in was the key to success.

Even the "craziest" people learned not to make waves. Linda was trying to tell one lady that she thought God would be there for her. The lady was obviously psychotic and having a hard time. A staff member overheard the conversation. "Shut up. That is an inappropriate conversation." The most amazing thing was that this "crazy" lady turned to Linda immediately, "We need to quit. It's not worth the trouble."

Patients learned quickly to be careful about expressing their thoughts, their feelings, and their needs. There was not one single staff that any of the patients felt comfortable in talking with about anything of importance. Trust between staff and patients seemed almost an irrelevant ingredient to daily life on the ward.

As much as anything else hope died in the overwhelming boredom that was the most certain feature of the day's schedule. Every patient had to deal with a regimen of enforced passivity. Their choices were simple. Sit in the group room and watch TV or go to your room and sleep. Individual counseling was an illusion. Groups were few and no threat to anyone's favorite TV show. There was basically nothing to do and nothing to look forward to. Meals were the high point of the day.

Boredom seems endemic to many treatment programs. We justify it by referring to the need for structure and tell ourselves how much patients really need it. At it's most pervasive it is a soul-killing and mind-numbing monster. When people drown in boredom they no longer strive for a better future, but pray to survive an awful present. Depressed people, as many psychiatric patients are, usually find no reason internally to be hopeful. When the external environment confirms their internal gloom the result is a grim existence.

There was nothing to do on the ward to have fun. No games. No activities or events. No resources. No nothing. It is a curious logic that takes internally impoverished people and places them in an impoverished environment and then tells them the only answer to their unhappiness is medication. You stop wanting for things to be better when the message of daily life is that it is pointless to want anything. Boredom cannibalizes hope and leaves the future stillborn.

It is really hard to develop hope in life if the important people in life are not hopeful about you. On the ward it was a blessing seldom given. It is hard to bless people you don't talk to and impossible to bless people you don't notice. Discouraged people are discouraging to be around. Staff gets to the point where a day survived is a good day and the vicious cycle just keeps spinning. Patients learn over and over again that they are defective. Instead of being people dealing with extraordinary circumstances they become defective people who mess up all circumstances. The purpose of treatment is to give people a new lease on life, not to destroy any hope of a better life.

Everything in life is either a source of opportunity or source of deprivation. The ward had no promise, built no confidence, and bred no courage. It told patients that life offers you nothing more than you already have, and that they were alone with no real chance of a life worth living. Many people live a lifetime of what Linda lived for 7 days. For too many the psychiatric system offers only a way in and no way out.

From my wife I learned much of what I know about courage. She has survived serious issues with epilepsy, a brain surgery which has left her tragically disabled in many ways, 4 abdominal surgeries, and bipolar disorder.

She maintains hope where I confess sometimes I see little. With every reason to quit she has found every reason to live. She has known despair and had to fight for the life she loves so much. She has stumbled more than once. She has always stood back up. She remains an ordinary person coping with extraordinary circumstances through God's grace.

My wife reminds me of something a friend once told me. He had a wife with brain cancer who was supposed to die after 6 weeks who was still going strong after 6 years. "Larry me and you are lucky. People search their entire life for proof of God. Me and you get to see his miracles every day."
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