Play the ball as it lies

This is my last post before taking the month of August off. I am at a crossroads as to the direction of my blog. I hope that my time away will provide fresh insight or else help me to realize that my blog has served its purpose and it’s time to close. Comments and suggestions are most welcome. I read and answer every e-mail.

A reader has asked me what I think the cause is of Chris’s problems. I answered “me”! I am only being partly facetious when I say this. While there are probably many reasons for why Chris is the way he is, I do think that mental illnesses (in fact other illnesses, too) grow out of the family story. As painful as it is, I feel that self-examination is important to appreciate larger truths. Another way of looking at is that “the apple doesn’t fall far from the tree”. This to me is a comforting thought. It says that Chris’s problems are not insurmountable, in fact, they are understandable in the family context.

Too many of us turn our problems over to institutions and seek medical answers when we could put more of the onus on ourselves to seek answers and to provide solutions. Nobody will ever care about your relative the way you do, or the way you should. Many readers will object to this last statement, citing personal circumstances, dual diagnoses and the impossibility of living with someone with a mental illness.

What I have noticed, is that Chris wants to be with his family. His behavior at home has, on occasion, tested our patience beyond all belief, but sending him away is only a temporary solution. While he is away is a chance for us to get our own house in order. The street is not an option for us, no matter how tempting it is in our worst moments. The loneliness of those diagnosed with a mental illness only intensifies when separated from the family. Sure, I can visit Chris every day in the hospital, but it’s not the same.

What is missing in the mental health system, no matter where you live, is empowerment, helping patients and families to help themselves get better. If the customer is always right, then why isn’t the patient, or the involved family member, by extension, always right? If, for example, a person does not want to take medications, then shouldn’t this be an indication that some other solution should be sought? When families can’t cope with the patient at home, then why aren’t there affordable, short term, drug free treatment options to allow a needed time-out? Mainstream medicine is not very consumer oriented when it comes to allowing people to choose.

We do not play the ball as it lies when it comes to treating mental illness. Many people who have been labelled mentally ill are creative. They are inclined to art and music. Yet, the solutions we impose on them are scientific. We give them meds and talk about their biochemical imbalances, as if they are laboratory animals. Could they be telling us that the solutions to their problems (our problems) lie in the realm of art and music if we would only speak their language?

Recovery: not what you were thinking

Chris and I have come full circle. He has been out of the hospital since May and doing well at home. By doing well I do not mean he is free of delusional thinking. It is there, running beneath the surface like a low grade fever. This may come as a surprise to anyone who labors under the false impression that being on meds takes care of all that. It doesn’t. Chris, for the time being, is sociable, humorous, helpful, and a regular guy in many respects. May it ever be so. He is once again considering enrolling in a university course this fall, if only to stem the loneliness. I have faith that Chris will continue to recover in surprising ways.

I am pleasantly surprised to discover that Chris has recovered rather quickly this time around. This is not what I have been led to believe. I have read countless articles that claim that it takes much longer to recover with each relapse. I don’t know where this claim comes from, but naturally my suspicion falls on the pharmaceutical companies. Even so, real people (as opposed to just pharmaceutical companies) also report that it takes longer for the medications to be effective a second or even third time around. The issue is whether you consider the medications effective in the first place, which I do not. I feel that the medications have only been helpful for Chris as a sedative, not as a symptom reliever.

Chris was a more evolved person in any case before his recent slide. I credit this to the fact that my husband and I cared enough to keep at it and to try new ways of thinking and new interventions. I consider it less a relapse on Chris’s part than a necessary breakthrough. R.D. Laing says it best: “Madness need not be all breakdown. It may also be break-through. It is potential liberation and renewal as well as enslavement and existential death.”

I hope that I have painted a realistic portrait of what recovery can look like. It is not as straight up as many would have you believe. I do believe, however, that focusing on the individual and not giving up, goes a long way towards helping your relative regain a normal life.

Where can you go just to heal?

Dr. X asked Ian and me after Chris had been under his care for three weeks, what our thinking was as to why Chris was improved. “It’s easy, we said, “he’s away from us!” It was getting absolutely awful at home. Chris is angry and the situation just kept getting worse. Now that he’s away from us, and we’re away from him, he has a chance to regain his bearings.”

The simple explanation put forward by people who know Chris best (his family) was not taken seriously enough. Dr. X was having none of it. While we all had feel good words of encouragement for each other at our meeting, Dr. X was determined to tinker with the low dose of the one med that Chris on. We had managed to keep Chris’s dose at 10 mg for almost a month, but the pressure was on to add another antipsychotic at a similar low dose. Why? I believe for no other reason than because the health care system we are under believes in two low dose antipsychotics taken concurrently. Dr. X didn’t say that, of course. He said he thought Chris could improve some more if we just found the right combination of drugs. “Yeah, right”, I thought, “and I bet he would also improve just by coming home”. Then a darker thought intruded: “What’s the particular relationship here between the drug prescribed and, say, funding a new wing, of this hospital?”

Why couldn’t they just leave well enough alone? Chris was improving anyway just by getting away from us. Families need a break from their psychotic relatives, but there is nowhere a patient can go under medical supervision where he can just get on with it without drugs. Time and distance is a great healer, too, but this goes unrecognized in today’s mental health system. To an institution, it’s all about the drugs. Dr. X went as far as to tell me that the “newest” research says that people should continue on low doses of antipsychotics for a long time, and not go off them. I think that the pharmaceutical companies are writing the script here.

The drugs are placebos at best, in my opinion. A drug, to me, is effective if you no longer have symptoms and ugly side effects, and that is not the case with antipsychotics. The newer antipsychotics produce fewer side effects, but, like the older ones are not terribly effective at alleviating symptoms. One measure of the effectiveness of a medication is how long the patient adheres to taking it. A Wall Street Journal report of a 2005 study by the National Institute of Mental Health, stated: “Nearly three-quarters of people treated stopped taking the medicine they had been given within 18 months, due to side effects or poor control of symptoms.” The Washington Post noted: “The surprising result of a federally funded study released yesterday challenges widespread assumptions among psychiatrists about the best way to treat serious mental illness and underscores the extent to which physicians, patients and policymakers can be blindsided by self-interested research by drugmakers.” In other words, the newer antipsychotics are no more effective than the old ones. The study was about the pros and cons of types of medication. It did not consider other best ways of treating mental illness, such as psychotherapy and energy psychology. Predictably, the National Institute of Mental Health is now looking at – guess what – furthering research into even newer drugs to treat mental illness. The NIMH won’t be going holistic anytime soon.

The pathetic explanation of why Chris ended up back on two antipsychotics, after having being weaned off them through the judicious use of supplements and alternative therapies boils down to I got tired of being the odd one out. When Chris started to go downhill, everybody but everybody was clamoring for us to medicate him. The only hold out other than me was the holistic psychiatrist, and unfortunately, she lives far away. Chris also didn’t help his case or mine by going psychotic.

Our relationship with the holistic psychiatrist died when we put Chris in the hospital. In her opinion, we, meaning Chris and his parents, failed to prevent Chris from going nuts. Working with her was great while it lasted because she taught us so much about healing. I am knowledgeable enough now about vitamins and supplements to continue working on my own with Chris. I am not looking forward to fighting a new war on the medication front, at least not for now.

The doctors will credit any progress Chris makes in future with his being on medications. If Chris, for whatever reason, does poorly, they will want to raise the medications rather than help him deal with his problems holistically.

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Federal Study Finds No Benefit of New Antipsychotic Drugs – WashPost/Wall StreetJ/NY Times, Tues 20 Sep 2005; New Antipsychotic Drugs Criticized, Federal Study Finds No Benefit Over Older, Cheaper Drug – Washington Post, Tuesday, September 20, 2005 http://www.ahrp.org/infomail/05/09/20.php

Back on an antipsychotic

I observed dramatic results in Chris from one day to the next. By the end of the first day on the much larger dose of niacinamide he was more sociable. We had guests that evening for a Robbie Burns supper and I made sure that Chris stayed in his room and took his meals there. He emerged from his room after our guests left, sat down at the piano and played some traditional Scottish tunes by ear. He hadn’t been interested in music for months, other than to talk about it. The next day I took the afternoon off and came home to find Chris smiling and chuckling over some Seinfeld episodes. He hadn’t laughed for months. He was a little quicker to eat and much less agitated than I had seen for a long time. The tension that we experienced together seemed to melt away.

My niacinamide insight unfortunately arrived too late to save Chris from going back on an antipsychotic. He had been too close to the edge and by all objective criteria was over the edge. I couldn’t be 100% sure that pronounced changes with the niacinamide that we observed in Chris would continue. I know that if the decision were mine alone I would been willing to take the chance and not fill the prescription for a few days, but Ian would not be willing. Dr Stern would be relieved. It would allow us to say to all those well meaning friends, that “yes” Chris was on medication, case closed. Of course I knew that because of Chris’s past experience with the antipsychotics that antipsychotics were not the answer for him.

The holistic psychiatrist was clearly annoyed with Ian’s and my inability to prevent Chris’s deterioration and said so in some rather pointed e-mails. The doctor honestly believes that supplements will fix everything and good mental health is a question of getting the supplements right. I believe that there is a human will factor at work that will trump supplements (or medication) any day in both good ways and bad.

Chris was on a minimal dose of an antipsychotic for less than a week when I decided “it was time”. Chris got himself up early so he could be in time for choir practice before church. This was remarkable in itself, as Chris was usually late for choir. When Ian and I arrived at church an hour later, Chris was not in the choir. I found him in the church office, distraught. He reported that he started hallucinating on his way to church and somehow felt he had physically bent a lamppost on the way, though he couldn’t be sure. When the choir director asked him to open the hymnbook he snapped at her that there was no reason why he should. At some point he lightly punched a fellow choir member in the arm. He was becoming aggressive and the minister put him in the office where we found him.

The next day Ian and I took Chris to a psychiatric clinic for an evaluation. We were hoping that they could offer us breathing space, a short term stay for Chris, maybe a week or two to allow us all to distance ourselves from an intolerable situation.

How many supplements can a human being take?

Throughout the rest of January, Chris fluctuated between semi okay and not okay, but the clear trend was down. I grew weary from lack of sleep. Chris was still able to sleep through the night, so that was not a problem, but it was my worrying that prevented me from getting a good night’s sleep.

I was beginning to hate the supplements almost as much as I hated the medications. Part of the reason is that every supplement (thirty-five in all) seemed absolutely essential. I was terrified of running out of one or of forgetting one. This becomes a tyranny. And, conversely, when one supplement becomes especially critical, as the holistic psychiatrist now claimed the niacin blend cream had become, then one begins to question its value when all thirty-five of them were supposed to be so critical and the patient is still doing poorly.

Towards the end of January we ran out of his crucial niacin mixture cream and had to wait until it arrived by mail. It was getting touch and go that the cream would arrive before Chris went completely bonkers. There were many people who knew Chris who were beginning to urge us to put Chris on medications. With much regret, we asked the holistic psychiatrist to prescribe an antipsychotic for Chris in addition to the mood stabilizer he was on.

Where does pain come from?

On New Year’s Day 2009 Chris and I braved the icy paths and took a walk towards the end of the day in the park across the street from our building. We plunked ourselves down on a bench. The sun was beginning to sink in the western sky. The temperature got colder. The tensions of the past few days left hardly anything to say to one another.

“What do you see when you look around you”, Chris asked suddenly.

“Reality, Chris, I see reality”, I said, exasperated.

“I see the Atlantic Ocean”, he said, gazing at the setting sun.

“Come on, Chris, the Atlantic Ocean? ”

“Okay, I see the river, then”, he said, shifting his gaze to the south.
The river is not visible from where we were sitting. Was he putting me on? I don’t know. I didn’t try to extract a pedantic, stupid factual answer from him.

We talked about Chris’s childhood, small recollections of our life in our previous city. I decided to go further back. “Chris, do you remember much about your time in utero? You must have liked it because you spent ten months there.”

“Oh yes”, he declared, suddenly animated with the glazed look of psychosis.

“Really? Tell me what you remember.”

“Well, apart from being completely aware that I was in the cell (as he called it) and hearing the guitar that Dad played, it was kind of gooey and red, but it was nice because I felt really close to God during that time. I haven’t felt that close since.”

“So why did you decide to venture forth at all, after ten months?”

“I felt I had to see if there was more to this.”

“And what did you find?”

“I see God and feel his presence, but not as completely. He’s there in that tree and in the air. Knowing he’s there covers the pain.”

I missed a golden opportunity to ask him where his pain lay. That would have to wait for another day. It was getting cold.

I hate you! Now we’re getting somewhere.

Bipolar Chris faded away briefly after the reintroduction of the needed supplements. Then it all changed, again. He seemed determined to throw us off guard, to keep our lives in perpetual turmoil. I realized he was harboring deep anger with Ian and me because he was no longer trying to hide it.

I took his words and actions at face value. I did not pretend to excuse it as simply the ramblings of someone mentally ill. One night Ian and I came home to find the bathroom wall fan dismantled because Chris took it upon himself to fix the noise problem, knowing full well that we were planning to have a licensed electrician look at it. He gave away non-trivial sums of pocket money to street people and he wanted to let us know he had done this. He continued to drop hints that he was falling behind in his course work, hoping no doubt to provoke our very real fears about his not keeping up with assignments.

Ian and I finally refused to take the bait. I wanted off this damn roller coaster ride. I was becoming extremely angry and depressed myself. I hated to be home alone with Chris. He was making no useful contribution to our household and was now depressed and angry in a passive aggressive way. This is the point where I suspect a lot of people with schizophrenia get kicked out of the family house and told to fend for themselves.

Ian and I had a few frank talks with Chris. He told us he hated us, as if this was some really awful thing. “We can live with this”, we chorused, “but YOU are having trouble living with deep seated anger and it is getting in the way of your moving on. You are only harming yourself. You don’t want to move on at this point, do you, because you are scared of growing up and taking responsibility for your life. You’d prefer to stick it to us.”

Criticizing the mentally ill family member is not recommended in the mental health literature. The family is supposed to understand and endlessly empathize and not see intent in their madness. Mindful of this, Ian’s and my only recourse was to stay out of the apartment as much as possible, to stop micromanaging Chris’s life and to try to ignore his many peculiarities when we were home. He would have no audience in us. We stopped inviting company over because we didn’t want them to be exposed to the dreariness and weirdness of Chris and the pall that was cast over the household.

The God delusion

The sudden realization to Chris that he was not God was a breakthrough, and needed careful handling. It was astonishing that he seemed to have recovered in so many ways and yet was under the impression that he was God. I had been fooled into thinking that Chris was further ahead than he actually was in terms of recovery.

I knew enough by now through my readings of literature and alternative viewpoints to take Chris’s confession in stride.

“You alone are not God, Chris, but you have the divine spark within you. Some of us seem to have it more than others and you are one of those people.”

I wanted to help him but I didn’t want to lead him. It was tricky because I only suspected what the underlying issue was and did not know for sure.

“So, what is so hard for you right now, Chris?”

“Is this all I can expect?”

I am now beginning to wonder if I am off on the wrong train of thought. I am confused.

“Did someone say something to you today?”

“Yes, several people did.”

I don’t pursue his last statement because everything he has said up until now is ambiguous. Instead, I present my perceptions to him.

“Chris, is it possible that you are beginning to perceive a new reality and it doesn’t seem as exciting to you as your fantasies?”

“It’s so, it’s so, it’s so . . . ” he wailed.

“Boring?” I ventured.

“What have I done? What have I been doing?”

“You know, reality as most people perceive it can be exciting, too. You should give it a try!”

Chris looked up from the table and managed to laugh before he lapsed into more crying.

“I’m so sorry, Mom, for everything I put everyone through.”

“What do you mean, Chris? Your crisis in an odd way has been beneficial for all of us. Believe me, I think we all needed this to happen, including you. You have certainly made me more creative and more authentic as a person. I think the same can be said for everyone else in the family. Maybe I should only speak for me and Dad, but I notice that Taylor has a confident, creative approach to his life. Alex has become a super interesting young man who clearly enjoys being with his family. So, thank YOU for bringing needed changes to OUR attention.”

With this, I encourage Chris to lie down on his bed and I drape a blanket over him. I turn off the lights in his room and pull up a chair close to the bed. I hold his hand and he holds mine, with warmth and gratitude. I have never felt so much like a good mother to Chris as I do now. I sat there while great sobs shook his body and his tears fell onto the pillow.

“Just cry it out, Chris, for as long as it takes.

“Fantasies are fine, in their place, but reality helps you to move ahead in life, to to get a job, to carve an independent life and to develop close relationships, if that’s what you choose. Don’t lose your creativity because that is precious. God wants us to make the most of the life he has given us. We honor him in this way by succeeding in life on Earth. You are on the verge of promising to fulfill the potential that God sees in you. Fantasies are a false friend if they are all you have. Now go to sleep and cry some more.”

The beginning of recovery or the beginning of relapse?

One evening towards the end of September 2008 I found Chris outside our apartment building, looking sad.

“Did you keep your appointment with Dr. Stern?”

“I stopped on the bridge and couldn’t go on. I just held on to the railing. It seemed so far away.”

I fought the panic that was beginning to stir inside me. I had never thought of Chris as suicidal, but I also sensed that he had been drawing closer to reality in the past few weeks. This is a perilous transition. I wanted to probe further, to see where his despair lay. “It” seeming so far away can have many possible interpretations: The boiling river down below (shudder), his aspirations for his future or whatever else he may have been feeling.

Back in the apartment, I made a minute steak and small salad for him and encouraged him to eat. He barely touched his food, letting it go cold on his plate. His eyes were reddening. He had been planning to go to his appointment that afternoon with Dr Stern, but first stopped off at a store to pick up an item for Taylor.

“When I walked in I realized then that the store was not my store, it was just a store. ” Chris started to cry. This was encouraging to me, though painful to see him in such pain. I felt he was beginning to make progress as a human being.

“And then what happened? ”

“I walked along the street where the trams are and then I had a coffee.”

Chris continued to weep. “What have I done, Mom, what have I done? I am not God!”

Wishful thinking

Trying to be endlessly understanding of Chris, Ian and I grew frustrated and tired of continuing to support him in “activities” that were keeping him occupied but not leading to a job or education. We were getting panicky about lost time. We wanted desperately to launch him into independent living, away from us, preferably as a full time university student. We felt we had micro-parented him far too long. Making Chris the focus of our attention had alienated Taylor and Alex.

Ian and I found a small college that offered environmental and music courses and a work program in a tranquil mountain setting. We arranged to visit the college with Chris when we took our vacation in August. We were hoping he could possibly start as early as January 2009 if he could see himself in that setting. We were also very concerned that Chris would be feeling lonely and left behind now that his youngest brother Taylor was leaving home soon to begin university. Alex was still away at university. Of our three sons, there would be just Chris at home now.

There were problems with our strategy, which the coming months would prove to be a big mistake. Chris continued to have difficulties, even though he could now “pass for normal”, in social situations. Chris still had a great capacity to intellectually complicate a simple thought. He seemed to know where he was going with it and what the connection was, but it was obscure to the rest of us. Five and a half years after his acute psychotic breakdown, he was hesitant in his physical demeanor, lagging behind others a bit, not sure how to enter a room and when and where to sit down in it. All this signaled to me an unease with his environment, a body/mind disconnect. He was so much better overall and looking so well, that many mothers may have stopped there and thought this is it, this is the most I can expect, given all that has happened and all that is predicted about the chronic nature of schizophrenia. I wanted Chris to be even better because I knew he could be. I also wanted him cured. I had been operating under the assumption that the vitamin therapy would bring his biochemistry in line and this in turn would clear up his convoluted thinking and odd physical mannerisms, but not so.

I was also very aware that if Chris was ever going to be able to live away from home it was well worth taking the time to allow him to recover more, to do more therapies, even if this precipitated a further crisis.