Christmas was hell

By December 2008 Chris was in serious trouble, and I was no longer sleeping at night. We were right back to where it all started when Chris first went off to university six years earlier. His mind was slipping further into psychosis. I watched it all happen once again. How could I have let this happen? How could HE let this happen? Yes, I was glad earlier that he was becoming emotional for the first time ever, but he was also becoming a mess, losing his keys, his identification, forgetting his appointments, and singing, jumping and twirling in the streets.

He was spending inordinate amounts of time in the bathroom. More ominously, he was beginning to leave traces of fecal matter on the walls of the bathroom and on the parquet hall floors, just a hint here and there. He was also urinating in his pants. Ian and I had to re-examine Chris’s need for an antipsychotic, something I especially felt never helped him to begin with and might not even prevent his further slide into psychosis.

His holistic psychiatrist discovered from talking with Chris that he had stopped taking his detox footpads months ago and had been rather careless about some of his other supplements. (Chris was becoming increasingly cryptic when asked straightforward questions, so we are not sure where the truth lay on adherence to his regime.) He was in a state of toxic build-up according to the psychiatrist, that contributed to the expression of anger, mania and depression that Ian and I had witnessed.

From a purely biochemical point of view, my view of Chris as going through a needed stage of emotional release looked rather naive. However, did his emotional state cause his biochemistry to go out of whack, or did his alleged careless use of supplements cause his emotional state? Whatever it was, we wanted it fixed right away. We could concentrate on his needed emotional release after we rebalanced his biochemistry.

Christmas 2008 was hell. Alex and Taylor were both back from university and unhappy at home. They barely gave Chris the time of day, except to be irritated by him. This pained me tremendously, but at the same time it was a reasonable response on their part. People who communicate appropriately with others get included. People who don’t are shunned. Chris was behaving in his own particular psychotic way, crouching on the floor, speaking only the most banal thoughts (but ingeniously cloaked in aggression and sarcasm if you bothered to pay attention), taking long pauses in answer to simple questions, and continuing to urinate in his pants and decorate the bathroom with small flecks of feces. One night I woke up around 4 a.m. to find him in the darkened hallway. He said he was uncertain as to whether he was awake or asleep. I gently led him back to bed.

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.

Bipolar Chris

Chris came home from his first 45 minute Alexander Technique lesson a week later a different person. He was more decisive about where his body was going. He threw off the gloom that had been dogging him and became practically ebullient in his expressed enthusiasms. He was back on track, or so it seemed, for a few days. He rejoined the choir, signed himself up for another credit course at university and was beginning to establish a better sense of what he was doing in a room. This newfound enthusiasm lasted about a week and then, boom, he began to become unglued again.

When I walked through the door at night would I get the lady or the tiger? Sometimes I came home and Chris seemed more or less together and sometimes I came home and he would be staring off into space and showing the old hesitancy. Over the course of the next couple of weeks I noticed that his speaking voice dropped an octave or two. I shrugged off this weird new development as just another possible effect of the Alexander Technique and probably a good thing, but I wasn’t sure why I thought so. It may have something to do with my perception that lower toned voices signal confidence.

He appeared to be going through a somewhat manic phase, immediately signing up for a fresh course so quickly after dropping the other two, speaking more quickly and interrupting Ian and me with emphatic but off-base observations. One can only imagine what his classroom performance was like. I began to fear that he would have to drop the credit course he had only recently started. After discovering that he blew through his monthly allowance in one week, we began to dole it out to him in smaller amounts. The bipolar Chris was new to us.

Then his holistic psychiatrist phoned. “I have it!, she announced. “I think I can explain why Chris has been having problems recently.” She had stopped prescribing a certain amino acid supplement since August, believing that Chris no longer needed it. However, she had come to learn that it was important for her patients to continue this supplement for longer periods in order to bring the elevated dopamine levels within a normal range. What Chris had been going through was called protracted withdrawal.

Her muscle testing revealed that Chris’s dopamine levels were elevated in his glands and in the central nervous system. As the dopamine system is affected by the serotonin system she recommended an essential amino acid which synthesizes serotonin and niacin. We endured two more weeks of Chris’s quirky behavior before the needed product arrived in the mail. The change in Chris after only a few days on the added supplements was astonishing. He was able to sit with us at night and converse in a normal way, not from two rooms away. His sense of humor and playfulness came back.

This again reminded me again of the importance of getting the biochemistry right. I had been focusing of late on Chris’s problems as psycho/spiritual in origin, and had been discounting the importance of the biochemistry behind his actions. Once I began to appreciate that extra supplementation could indeed help him regain normal, I felt better and more optimistic about his immediate prospects than I had in a long time.

The second thing I learned is exactly the opposite of the first, meaning that if I thought that Chris’s problems were just a matter of getting the biochemistry right, then I would miss the importance of what I have earlier in this blog called the X-factor in schizophrenia. This is a most confounding, unpredictable condition. If you think you know it, you do not. It is also a chicken and egg thing. Does the biochemical imbalance come first, thereby causing mental trauma, or does the mental trauma come first, thereby causing biochemical imbalance? The wisest course of healing action is to keep an open mind and not place all your eggs in one basket.

A stage management problem

Later, I sent Dr. Stern an e-mail to inform her that I had deliberately stayed out of influencing Chris’s decision (not to go back on meds), in large part because I was tired of parenting him and that it was long overdue that Chris should learn to make his own decisions. I also said that in the unlikely event that Chris killed himself, that would be his responsibility, not mine, not hers and not Chris’s holistic psychiatrist. I added that, had Chris made the decision to go back on the meds, I had no intention of monitoring his intake as I did previously. The chances were high that, left to his own devices, he would be non-compliant with predictably disastrous results, but that’s a problem that I no longer wanted to deal with. I was tired of thinking for him. Dr. Stern remained unconvinced about the risk, but Chris and I had made our position clear.

We had escaped the medications but were back to the problem of Chris. If there are multiple reasons for a single event (Chris’s wobbly recovery or relapse – what is it?), then there must be multiple solutions. Chris could go through years of psychotherapy (as many patients do) or we could try to hasten his recovery by adding to the mix.

I have yet to personally encounter a psychiatrist who is forthcoming about any therapies outside of their own bailiwick that might help speed the healing process. I hit upon the idea of more Alexander Technique because I was encouraged by the overdue wellspring of emotions it may have provoked in Chris. There was another reason, too. In the 1930s, Kitty Merrick Wielopolska trained under F.M. Alexander and later wrote a book about her eventual recovery from schizophrenia using the Alexander Technique. It only made sense to me that diligent adherence to the Alexander Technique could produce remarkable long term changes in one’s life approach.

Chris needed a little convincing because he was wary of further perceptual changes. I tried the tell it like it is approach.

“Chris, do you consider yourself handicapped?” I asked him.

He looked startled. “Uh, no, not really, why?”

“I don’t see that you are handicapped, either, but you act handicapped, Chris. Other people may perceive you as handicapped.” I was specifically referring to his trouble entering a room, walking across a room, sitting down in a chair. Entering a room has always been problematic for him as he is so silent that it seems he just pops up out of nowhere. His noticeable recent problems, in addition to making an entrance, were that he didn’t seem to know what he was doing in a room. He pauses, walks a bit, pauses some more, reverses direction, etc. He stands while others are sitting, making it socially awkward. When he tries to sit down, it takes him a while to negotiate through the process. Knees bend, it looks like he’s going to position himself, and then he hesitates and loses the momentum. I used to think this behavior was due to the medications, but the problem persisted with varying intensity since discontinuing the medications.

I remain convinced there is a large element of acting to his condition. His negotiating his way through a room is also a stage management problem, is it not? Where people refer to schizophrenia as a particularly associated with highly creative people, I take that further to mean that they are also equally creative in the subtle manipulation of emotion. Please hear me out on this. Gary Craig, the founder of Emotional Freedom Technique and others believe that unresolved emotional issues are the main cause of 85% of all illnesses. Resolve the emotional issue and it is very likely that the physical problem will resolve itself. Therefore, what you see is something masquerading as something else, rather like acting. Some cancers, for example, have been know to reverse themselves when underlying anger is resolved.

Chris, I felt certain, was very, very angry.

Once more a nerd

It was painful for me to see Chris reverse the gains he had made He was starting to look more and more peculiar, reverting to the nervous nerd look that had marked the first episode of his psychosis four years earlier. He buttoned his shirts up to the collar, and cinched his pants around his waist, leaving him looking like he was wearing high-water pants. His new red framed eyeglasses added a lab technician look to his already “odd-ball” appearance. Other people wondered what was happening to him, too. Instead of asking Chris what was going on, they spoke to me. “Oh, he’s just going through a rough patch, ” I tied to reassure them, not very convincingly. What looks like relapse may often be recovery I told myself every day or I might have completely given up hope. As the autumn progressed, Chris lost interest in going to choir practice and in continuing with his voice lessons. Ian and I insisted that he drop his two university courses before he failed them. Through all of this, we continued to work with Chris’s holistic psychiatrist to fine tune his supplements.

Then came an e-mail from Dr. Stern. While we all had agreed at our last family appointment that this was probably a necessary crisis for Chris and that with time and support he would emerge stronger, she was now suggesting strongly that he go back on both an antipsychotic and an antidepressant. She was worried that he was suicidal because he had told her in an indirect way that I thought he was suicidal. This was a miscommunication on his part about what we were discussing.

I pulled Chris aside. “Chris,” I hissed, “there are at least two things that you can tell a psychiatrist that are guaranteed to have them pulling out the prescription pad. One is to admit to hearing voices, the other is to mention suicide in any context.” Dr Stern was doing what any psychiatrist would do under the circumstances. She was protecting herself. I was very disappointed and somewhat angry with her. She knew we were against the medications because they had never worked for Chris. We engaged her specifically to help get him off them and now she wanted to throw all that away because she thought he might be suicidal.

Many people will side with Dr Stern here, because, after all, they will reason that you can’t be too careful when it comes to suicide, but I disagree. If you mention the word “suicide” to a psychiatrist, I suspect it doesn’t matter in what context you mention it, the fact is the “s” word has been said and psychiatrists have to consider their license and the very real possibility, in some countries at least, that they will be sued by the family if a tragedy does occur. I was not willing to have Chris’s recovery postponed and perhaps delayed forever by going back on medications. Dr. Stern saw Chris once a week. I saw him every day and I felt that my judgment as his mother trumped her judgment as his psychiatrist, even though I felt she was a very good psychiatrist in many other ways.

I sat Chris down. “What you decide to do about the medication is up to you,” I said. I deliberately avoided trotting out the reasons why I was against the medications. Chris knew them only too well. Chris confessed that, among other things, he was afraid that if he went back on medications, he would never be able to function at university. It was true he wasn’t functioning now at university, but the medications could make it worse, in my opinion. However, I said nothing. Chris sent an e-mail to Dr. Stern, copied to his holistic psychiatrist, Ian and me, saying that suicide was the last thing he had in mind and he was sorry if he misled her. He said he wasn’t against the medications, he just didn’t believe in them for himself.

“My feeling, he wrote,” “is that I am the cause of my own depression, but I hope that it will lift just as the clouds melt away after a summer thunderstorm.”

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!”

Cranial osteopathy versus cranial sacral osteopathy

Prior to the voice training workshop and his introduction to the Alexander Technique, Chris underwent a series of cranial sacral massages. Cranial sacral massage is related to cranial osteopathy. Cranial osteopathy was developed by osteopath William Sutherland in the early 1900s. He observed that the temporal bones of the head near the ears move very slightly, rather like the gills of a fish. Cranial osteopaths and cranial sacral osteopaths believe that there is something called a cranial rhythm, which is present in all body tissues and results from the pulsing of the cerebrospinal fluids surrounding the brain, spinal cord and sacrum. Disturbances to this rhythm put pressure on the cranial bones and other parts of the body, leading to bodily and nervous dysfunctions. The rhythm can be disturbed by birth trauma, forceps delivery, accidents, etc. Both cranial osteopathy and cranial sacral osteopathy detect and correct the cranial rhythm through gentle massage.

Stephanie Marohn devotes a chapter of her book, The Natural Medicine Guide to Schizophrenia, to cranial osteopathy as of potential benefit for schizophrenia. The finer distinctions between cranial sacral osteopathy and cranial osteopathy were unclear to me and I booked cranial sacral massages for Chris and me thinking they were one and the same. Chris reported suddenly hearing new age music while undergoing his first massage, and he knew there was no music playing in the room at the time. I, on the other hand, experienced nothing so dramatic. My massage was pleasant and relaxing. I had no reason to think that this particular massage could be anything but beneficial.

On returning from the vacation and college tour in late August (and missing his flight), Chris began to become unfocused. In addition to not hearing what Ian and I said to him, he soon failed to keep up with his course assignments at the local university. At choir practice, he was out of sync with the others. Chris and I talked about this at length. He confessed that he felt his perceptions were changing. “Take that police siren we are hearing right now off in the distance. Now it seems like it’s just a siren, but before I used to think about all the bad things that had happened to someone or the crime that had been committed. I am still stuck halfway between the old perception and the new one and it gets disorienting. I also feel that my physical reality is changing and I don’t know where to look or put my feet.” Chris was not so sure that the new reality was going to be better than the old one.

I began to worry that I had inadvertently “killed” Chris by mixing up cranial osteopathy and cranial sacral osteopathy.

The Alexander Technique

Just before leaving on our family vacation, Chris took a week-long voice training workshop under the tutelage of his choir director. Several hours of the training involved the Alexander Technique, a technique familiar to many musicians, dancers and actors and people wanting relief from back pain. The Alexander Technique part of the workshop was taught by a highly experienced AT teacher. (Note: The Alexander Technique is not a therapy.)

F.M. Alexander was an Australian actor at the turn of the last century who developed chronic laryngitis. Repeated visits to physicians yielded no solution to his problem so he began to study what it was about his body position that may have contributed to his condition. It took him nine years. He started with the premise that it was the way he held his neck. He needed to move his head forward and up, away from his body, to lengthen his spine. When that did not make the problem go away, he realized that rather than start by correcting specific movements, he needed to look at the general misuse of body movements.

He came to the remarkable insight that even though he felt he was moving correctly, he often was not, and therefore he could not trust his own feelings. Old body habits die hard and try as he did to correct, he would revert to his old habits. He developed a method to execute the procedure even though his body was telling him the procedure felt “wrong”.

“I would stop and consciously reconsider my first decision, and ask myself “Shall I after all go on to gain the end I have decided upon and speak the sentence? Or shall I not? —and then and there make a fresh decision to

a. not to gain my original end
b. to change my end and do something different, say, lift my hand
c. to go on after all and gain my original end

“In each case I would continue to project the directions for maintaining the new use.”

The method forward in this statement by Alexander reminds me very much of Hamlet’s famous “to be or not to be” soliloquy (Act 3 Scene 1), which can be interpreted as an action/no action oriented dilemma. The method could lead to destabilizing behavior when executed by someone like Chris, who was struggling with his perceptions of reality in the first place. Some people can become very emotional because the technique can open up a flood of suppressed feelings and emotions.

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.