Wednesday, July 29, 2009

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?

Tuesday, July 28, 2009

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.

Monday, July 27, 2009

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.

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

Friday, July 24, 2009

Shit: biochemical or psychological?

Chris was packed off to the hospital with all his vitamin supplements. I left instructions with Dr. Stern to confer with Dr. X, the head of the unit, to make sure that Chris received them three times a day. I felt that all the progress that Chris had made would be quickly overturned if he was yanked off the supplements in favor of antipsychotics. Dr. Stern conferred with Dr. X about making this accommodation. He agreed, which was rather refreshing. Refreshing, yes, but suspicious. I sensed it would be a only matter of time before pressure mounted to get rid of the vitamins.

"I have such hate" said Chris glumly when I visited him a few days later. I bet he did and I was glad he admitted it, but I said nothing. Chris continued to urinate and defecate in his pants. The nurse informed me that the other young people were avoiding Chris and making fun of him, so they suspended his vitamin intake for a couple of days to see if this would stop the problem. I suggested to her that maybe his soiling his pants was a sign of anger and not a vitamin problem. For heaven's sake, we are in a psychiatric hospital - within these walls shouldn't shit be viewed as the deeply rooted psychological problem that it is? Instead, shit seems to be merely a biochemical end-product. What ever happened to Freud?

The French word for anger is "colère", in keeping with the words "cholera" and "melancholy", and is linked to the body's production of choler or black bile, one of the four ancient humours. Referring to black bile, Robert Burton, in The Anatomy of Melancholy, first published in 1621, observed that “there is no nook or cranny of the mind into which this ‘roving humour’ has not insinuated itself. It is ‘inbred in every one of us.’” He explained that he wrote of melancholy to avoid being melancholy. The famous schizophrenic "apathy, flat affect and lack of motivation" is this not depression and melancholy? If we all have it to some extent, cannot each of us find some resiliency in us to crawl our way out of it?

Chris was aware that he would miss out on interacting with others of he didn't clean up his act and he said so to me. He may have just been placating me, who knows? My opinion is that he would stop showing antisocial behavior when it was to his benefit to do so, not because the vitamins were temporarily discontinued.

Obviously, Chris's health was too important to leave to the discretion of the hospital staff, so I smuggled his packages of supplements into his room and encouraged him to take them every day.

At our next meeting, Dr. X announced to us that Chris's incontinence problem had cleared up, and so the decision to suspend the vitamin supplements had been the correct one. "Well, Dr. X", I interrupted him, "I am sorry to tell you this, but Chris has been taking the supplements all along. The vitamins have nothing to do with Chris's incontinence. Anger does." Dr. X flushed briefly, then regained his composure. "Then, I guess, under the circumstances, Chris may as well continue to take his supplements," said Dr. X, not unreasonably.

Thursday, July 23, 2009

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.

Wednesday, July 22, 2009

Niacin to the rescue

While we waited for the niacin cream to arrive, I had a rather amazing stroke of insight. I asked for guidance from God/the knowledge field and I got the answer the next morning. It is rather simple. I remembered that Dr. Hoffer wrote of a young man and his worried parents who came to see him. Dr Hoffer prescribed his standard niacin/vitamin C/zinc, etc. mixture and the young man went away. He came back from time to time for a check-up. Dr Hoffer asked him how he was managing and the young man replied that he still enjoyed his fantasies but when he felt he was going too far over the edge, he simply downed a bottle of niacinamide. Dr Hoffer was taken aback that the young man would take so many in one go, but reasoned that it worked for him so why criticize the unorthodox method? This young man was on the brink of psychosis or perhaps was even swimming in it and yet he managed to pull himself back by taking large amounts of niacin.

I looked at how much niacinamide Chris was prescribed and it was only one gram a day, although his doctor had told me to raise it to two while we waited for the niacin cream to arrive. So, Chris was taking two grams a day. Would doubling it to four grams or even five grams a day keep Chris from losing total contact with reality? Dr Hoffer recommended anywhere up to six grams a day for his patients with an equal amount of vitamin C (to prevent possible liver damage) and a B complex to make the niacinamide work efficiently. So, without consulting with his doctor, I simply upped Chris's dose and added the requisite amounts of vitamin C and B complex. Previously, I would have been concerned about doing anything without first checking with his doctor, but now I felt free to do what I felt was right.

Tuesday, July 21, 2009

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.

Monday, July 20, 2009

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.

Friday, July 17, 2009

The diagnosis food chain

My cherished holistic recovery program lay in a heap of ashes on the floor. I wasn't even sure if I was up to the job anymore. I had so many questions in my mind that I was unable to answer. With all that Chris has gone through over a period of six years and all the interventions he had undergone, why wasn't he better off? How is it that Dr Hoffer claimed such good results, even with young men? How is it that other people claim victory on vitamins alone? Why was unskilled me having to feel my way all by myself? Having to do this all by myself, and reaching this new low, I no longer knew if down was up or if up was down.

I was angry with the public face of the psychiatric profession. Psychiatrists spend more time fighting among themselves over theories of madness and therapeutic interventions than doing something constructive, like putting down their differences and saying to the patient “this particular therapy might just work for you!” Instead, they demonize the opposition by calling their ideas “dangerous” or "“untested”.

If I could wring anything positive out of the past few months, it was that Chris was moving up the diagnosis food chain. To those who care about a label, moving to what looks like depression and/or bipolar (to me schizophrenia and bipolar are one and the same) or schizoaffective or OCD, is an improvement over schizophrenia. Becoming angry, hostile and at times tearful seemed like a needed improvement over apathetic, ambivalent Chris.

Thursday, July 16, 2009

Commit me, too! I'm ready!

Chris's holistic psychiatrist provided an updated list of supplements before she left on Christmas vacation as a last ditch effort to get Chris through this crisis. She was not in favor of putting Chris back on an antipsychotic, although if push came to shove she reluctantly recommended a mood stabilizer that would also help with the psychotic features. Ian and I welcomed the idea of the mood stabilizer, figuring that a mood stabilizer administered for hopefully a short period would be easier to withdraw from than an antipsychotic. We put Chris on a mood stabilizer, in part to satisfy Chris's psychotherapist, Dr. Stern, and in part to cover ourselves with Dr. Stern should the situation deteriorate further. Then there was the community pressure (well meaning people) who kept reminding us something was wrong with Chris.

The complexity of administering the supplements and making sure that Chris took them as prescribed nearly drove me over the edge. It was all the worse because this time I was dealing with a psychotic underfoot. I lined up all his supplements for the week ahead and taped them into little paper packets, twenty one packets in all. I labeled them "1" "2" and "3" for swallowing at morning, lunch and dinner. He was now taking sublingual lithium drops and sulfur drops twice a day in addition to the mood stabilizer and the other supplements. I measured out the drops and stood over Chris twice a day to make sure he kept them under his tongue. I poured two liters of water in containers for him every evening and in the morning I mixed the powdered and liquid supplements in the distilled water for him to drink throughout the day. I slathered a detoxifying cream over his liver twice a day, and dabbed a special niacin cream that is supposed to work wonders with psychosis on both temples, wrists and the back of his knees. I supervised his detoxifying epsom salt baths which he did every second day. I watched while he put his detox footpads on every second night before bed.

In short, I was becoming a bloody psychiatric nurse. Actually, I was doing more than a psychiatric nurse would do. A nurse at least gets to go home and isn't concerned with administering supplements. I entertained fantasies of putting Chris in the mental hospital to relieve me of my round the clock caregiver duties. The only thing that prevented me from doing so is that he would have been immediately put on an antipsychotic as the price of admission.

A slight change in his supplements, the addition of the mood stabilizer and my spending a lot of time talking to him about his feelings and his responsibilities over his actions enabled Chris's condition to stabilize a bit over the Christmas period. This intense experience convinced me that Soteria and Kingsley Hall and the Jacqui Schiff home based approach worked better than what the critics reported. However, their approach needs a staff. I was simply exhausted and doubted whether I was up to the job.

Wednesday, July 15, 2009

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.

Tuesday, July 14, 2009

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.

Monday, July 13, 2009

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.

Friday, July 10, 2009

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.

Thursday, July 9, 2009

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.”

Wednesday, July 8, 2009

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.”

Tuesday, July 7, 2009

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!”

Monday, July 6, 2009

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.

Friday, July 3, 2009

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.

Thursday, July 2, 2009

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.

Wednesday, July 1, 2009

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. ”