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.

The ride on the recovery rollercoaster begins

There is an overwhelming urge, when a person seems well, to want to rush back to “normal” life. This is almost always a mistake. Insight and healing take time and effort. Probably years. I have deliberately used the words “seems well,” and “acting well” when it comes to Chris’s recovery. Recovery is not just about getting off the medication. It’s a fantastic start, of course, but you are still faced with the original problem of you and how you got to the predicament where you found yourself in the first place.

There have been many ups and downs since Chris suddenly started acting well again. The physics course he took in July 2007 for academic credit was a disaster. He convinced us he was ready for the challenge. He looked like he was ready, he was eager to do it, but he was unable to keep up with the others in his class. I thought at the time that the medications made it difficult for him to sustain motivation. That was perhaps part of the explanation, but not all of it. Chris had lost a lot of confidence and was dealing with very savvy full time students, many of whom were priming themselves for med school. He confessed he didn’t identify with their single minded obsession. Ian and I had to keep reminding ourselves that he experienced a social success, because he managed to live away from home for a month, making new friends, buying groceries, and cooking for himself.

During 2007 and 2008 Chris took liberal arts courses at a local university, one at a time. He started out by auditing them, therefore bypassing the necessity to write papers or take exams. His state of mental health was still unpredictable, although far, far better than when he was on medications, so it seemed to me. To our delight, during this period he joined the church choir and took voice lessons once a week with the choir director at our church, who is also a professional musician. He never would have considered voice lessons before. She saw in him a talent worth cultivating. “He understands music,” she said. “A lot of my pupils don’t. He’s also got a very good voice. ”

Fish stew and cravates

Chris made a pot of fish stew last night, which is noteworthy for many reasons. The stew was absolutely delicious. Chris went out and bought the ingredients, consulted a recipe book, and produced a glistening, mouth watering concoction of white fish, clams, and red and orange peppers in a reddish broth. His brother Alex heartily complimented him on the meal.

In the past, Chris’s culinary skills were lacking. He didn’t seem to care what he ate or how it looked. Remember the peas or carrots? He let me choose. Recently, he announced to me that he wants to take more care with how he does things and how he looks. It is possible that his sense of taste and color are reviving. I have been down this road many times since Chris’s problems began. Small things make me excited. We have all experienced these small victories.

He is still wearing the same dull necktie that he bought when starting university. “I began to think something was seriously wrong with Chris,” my husband said, “when he chose the dullest gray tie imaginable from a rack of real beauties.” My husband is a tie person.

Chris is intellectually able but does not wish to, or is not able to, pursue academic studies at this time. I wonder if he is more an artist now than the promising academic he seemed to be in high school. I do not take his lack of academic ambition as a sign that he has suffered intellectual impairment. Instead, I see a young man with a lot of musical talent and untapped creativity.

The benefit of institutions

Chris is out of the psychiatric hospital after three months and 10 days. This time around it was a different experience than when he was last hospitalized in the same institution for three months in the summer of 2004.

This time around I had warm fuzzies for the psychiatrist and staff. The atmosphere felt “homey”. Chris and his fellow inmates appeared much more functional to me than was the case before. We were moving up the food chain.

Although he is back on medications for the foreseeable future, I am no longer as uptight about the damage they are supposed to inflict. I have worked with a holistic psychiatrist for three years and I experienced how the other side of the drugs versus no drugs debate can be played out. It can be every bit as exhausting, demoralizing and propagandistic in its own way as what I experienced worrying about the damage that the drugs were doing. (See: The tyranny of vitamins – April 17, 2009.) At the same time, holistic/orthomolecular interventions take into account the personal history and biochemistry of the individual. For this reason alone, they are infinitely superior to meds. My position on the meds versus vitamins front now looks quite schizophrenic. In my own way I have become quite schizophrenic since schizophrenia befell Chris.

In the exit interview, Chris’s psychiatrist spoke warmly about Chris. He expressed a clear belief that Chris was evolving and that Chris will continue to evolve. I agree that Chris’s general future direction looks good, but not wanting to be a party pooper, I kept quiet about the niggling fear that Chris had merely gone underground for a while. No doubt the psychiatrist was also putting the best polish on the situation. Chris had been there long enough. There was nowhere to go but out. We discussed Chris taking life one baby step at a time in order to move onto the next level. We discussed letting him make his own decisions. During his worst periods Ian and I assumed that unwanted role. Chris has expressed an interest, in no particular order, in Buddhism and cooking classes. I was pleased to see that he pulled out an agenda during the exit interview and wrote down all his upcoming appointments.

The dreaded R words to the anti-meds folks are relapse and re-hospitalization. Re-hospitalization is seen as a sign of failure (relapse) and falling into the clutches of the drug lobby. I am now somewhat open to working with medications because (a) my husband is threatening to divorce me if I don’t support them (the gun to the head approach) and (b) because Chris has made progress over the past few years. I attribute this to the vigorous holistic interventions that he underwent during this period and the fact that we didn’t give up on him. The holistic interventions will continue, but I have “bought” the psychiatrist’s point that if, from time to time Chris needs a respite, the door is always open for shorter hospitalizations or overnight care on the road to good health. He suggested that this strategy shouldn’t be seen as a failure, but is more often a need for a sort of “regrouping”. The staff can offer help in this way. I nodded enthusiastically at the mention of short overnight stays. Although I fervently hope and pray that it doesn’t deteriorate to that point again, the idea of a little R & R away from Chris is very appealing.

First day back home, he was fine. Second day back, I wondered what Chris had been doing for three months in the hospital. He was acting pretty weird, possibly the voices, maybe not. The behavior always shakes me. This time around I promised myself that Chris was not going to get to me. I went to my room and closed the door, no longer wanting to be “helpful”. Let Chris come to me if he needs something or just wants to talk. At the end of the day, I broke my vow and instigated a little chat. Since Chris had still not filled the prescription that was about to run out, I asked him what exactly he was told at the hospital about the repercussions of not taking his meds. “Well, they just told me that I am supposed to take them every day,” he claimed. “And, what happens if you skip them or “forget” about them?” I prodded. He didn’t know. “I’m surprised that the doctors didn’t detail for you the physical consequences of not taking the meds as prescribed,” says I. “Being told to just take them every day is not as informative as spelling out the gut-wrenching head-clanging experience that you get by “forgetting” to take them.” I’m prepared to let Chris learn experientially on this one.

Reparenting and Jacqui Schiff

Another proponent of the bad parenting school of thought was social worker Jacqui Schiff, who took a number of schizophrenic young people into her household in the early 1970s to “reparent” them, using Transactional Analysis techniques that she had learned from Dr Eric Berne. All My Children, published in 1970, provides a graphic account of the struggles she and her husband went through in the process of reparenting. She is scathing about the failure of parents to send the right messages to their children, which, she claims, results in their subsequent development of schizophrenia. Despite the fact she is acquainted with the parents of her charges in only the most superficial ways, she feels qualified to pass judgment on them, while making the same questionable judgments in her reparenting that parents make in parenting. She is particularly harsh on the mothers.

This harsh view of the parents, and in particular the mother, was shared by many psychiatrists at the time, notably Dr. Loren Mosher, Dr. Leo Kanner and Dr. R.D. Laing. Unfortunately, blaming the parents played right into the hands of drug companies. Why do I say this? I say this because drug companies don’t blame the parents. Drug companies claim that schizophrenia is a matter of biochemistry, by implication not by bad parenting.

By labeling schizophrenia a brain disease, not a result of bad parenting, psychiatrists and drug companies have made it easier for parents to say, “Look, it’s not my fault my child has schizophrenia; my child actually has a brain disease.” They have also ensured fat profits for pharmaceutical companies for years to come by this particular logic. What parents, feeling bad enough about the situation, would want to believe that it was their fault, especially if they had raised other well-adjusted children?

At the same time, and this is important, why would parents prefer to believe that their son or daughter has a damaged brain? Why would anyone want to believe that they were somehow “damaged”? That idea is horrible. It is a hopeless view. It is locking the young person into a lifetime of misery and dependency on drugs. There are many websites devoted to showing computer images of the damaged schizophrenic brain. One such website shows pictures of early and late gray matter deficits in schizophrenia. “But”, proclaims the website, “while there is a significant loss of brain gray matter, this is not a reason to lose all hope.” (see link below) Yes, according to the website, these deficits may be reversible and scientists are hard at work on inventing a miracle drug that could potentially reverse these cognitive declines.

I began to appreciate these out-of-favor psychiatrists (and one social worker) after I decided that there was no way I was going to believe that Chris had a damaged brain. The more I read, the more I agreed with them. They were downright interesting. They weren’t trying to toe the politically correct line. They criticized the pharmaceutical industry and psychiatrists for entering into unholy alliances. For all of the emphasis on the pharmaceutical approach, patients weren’t getting much better and of course, there were the side effects. All of this struck a chord with me.

They seemed to be in favor of schizophrenia as giving added value to the world. R. D. Laing believed that schizophrenia was a creative process leading to spiritual and emotional healing and noted that other cultures view schizophrenia as a state of trance, which could even be valued as mystical or shamanic. Isn’t finding “value” in schizophrenia more likely to lead to healing?

I looked into Dr. Leo Kanner’s work again and realized that, as with much of our sound-bite-obsessed culture, even in 1960 his remark about refrigerator mothers was probably blown out of proportion. Dr. Kanner had gone on to say something that shows an understanding that the origins (he was referring to autism) might go further back than the parents have control over. “The children’s aloneness from the beginning of life makes it difficult to attribute the whole picture exclusively to the type of early parental relations with our patients…We must, then assume that these children have come into the world with innate inability to form the usual biologically provided affective contact with people.” He then challenges the mothers to turn against the psychobabble of the contemporary psychiatrists in favor of their (the mothers’) innate common sense: “[R]egain that common sense which is yours, which has been yours before you allowed yourselves to be intimidated by would-be omniscient totalitarians.” Well said, Dr. Kanner!

http://www.schizophrenia.com/disease.htm

Your doctor is not your friend

So, it seems simple, doesn’t it? You take your vitamin and mineral supplements, and within a few weeks or a few months you are back to normal.

There are many complicating factors preventing what I thought was supposed to be a fairly straightforward thing. Chris has been taking his supplements now for four years. He definitely seems more normal, but he is still not paying income tax and neither does he seem interested in making this a goal.

If Dr. Hoffer was as successful as he was in treating patients, now fifty years on, why is schizophrenia still viewed as “chronic”? Or, more personally, why aren’t you well?

I will throw out three ideas. One is your doctor. Two is you. Three is the competition. These will be discussed in separate posts. I’ll begin with your doctor.

Your doctor probably doesn’t believe in vitamins and may do everything he or she can to undermine your desire to introduce these into your personally designed program of total health.

Chris’s psychiatrist was one such person. To be fair, the psychiatrist was part of the institution in which Chris was enrolled as a day patient. So, it wasn’t necessarily the doctor who disapproved of vitamins. It was the institution that saw it as a threat to its way of doing business. The institution has a program to help young people in their twenties reintegrate back into society by giving them a focus for their day, therapeutic activities and medications. Recreational drugs were forbidden (rightly so) for those enrolled in the program but medications were not just encouraged, they were mandatory.

When naive me let the doctors know that Chris was taking vitamins, at first they said this was fine with them. They said the usual stuff like “vitamins aren’t proven useful, but they are not really harmful either.” When I began to notice improvements in Chris (usually I noticed the improvements – the doctors did not) I asked that Chris’s medications be lowered. The stage was set for conflict. If Chris had a problem with incontinence, for example, I blamed it on the medications being too high, they blamed it on the vitamins. If Chris was more out of it than usual, the doctors said his medication needed to be raised or even changed. To this I countered, “well, since he’s on medications, why is this even happening?” So then they would earnestly talk about damaged brains and the need for medications to protect the brain from further deterioration. I’m sure you have seen pictures of the damaged schizophrenic brain. It looks like a blue bicyle helmet that has had pink paint dumped on it.

One of the hardest parts of all this is having a spouse/family member who disagrees with your approach, or who may be supportive but is understandably worried about being wrong. None of us operates in a vacuum. This makes unilateral action on using vitamins challenging. The doctors and pharmaceutical companies exploit this, believe me, by terrorizing us about the damaged brain.

So, we try to work with vitamins in a climate of fear. It would have been wonderful if Chris were never on medications and if he had started on vitamins as soon as we thought something was wrong. But we didn’t know about vitamins or schizophrenia at the time, and we believed the doctors when they told us that medications were not only effective, but necessary in treating schizophrenia.

There is tyranny in the vitamin approach, too. I’ll save my comments on this for another day.