Play the ball as it lies

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

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

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

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

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

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

Recovery: not what you were thinking

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

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

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

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

Where can you go just to heal?

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

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

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

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

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

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

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

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

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.

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.

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.

How many supplements can a human being take?

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

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

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

Where does pain come from?

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

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

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

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

“Come on, Chris, the Atlantic Ocean? ”

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

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

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

“Really? Tell me what you remember.”

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

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

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

“And what did you find?”

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

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

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.

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.