Journeying Back to Self

Chris and I wish you and your family a wonderful New Year.

It’s been fifteen years since Chris was first hospitalized and more than that since he began to show symptoms of psychosis.

Today’s is my last post.

Thank you friends and readers for joining this blog and sticking with us. I started this blog in 2009, and recently welcomed my 150th follower. Thank you for your comments, thank you for personally getting in touch with me and sharing your own stories.

Chris is much older than when we started out and I’ve said and done all that can be said and done. The blog will still be here for reference and entertainment purposes only. My New Year’s project is to improve the categorization of my posts to make the blog more accessible. Pick a post, any post, and you may find something informative or just fun to read. If you would like a condensed version of the journey, do consider purchasing my book. I can guarantee, you’ll love it.

Just when I thought Chris had plateaued, something surprising happened. Chris’s motor tics have greatly diminished. I’ve noticed, too, that he is taking more initiative, such as going regularly to the gym and by speaking up for himself. The newfound initiative is a welcome sign because the negative symptoms of schizophrenia (motivation/initiative) are the hardest to treat and are what keeps most people with serious mental illness from working or studying.

This sudden shift appears to have been caused by his being prescribed an antidepressant back in August for his OCD symptoms (in addition to the Abilify he has been taking on and off at low doses for years). We learned that an antidepressant could reduce the tics. I’m now wondering if his problem all along has been some form of OCD and underlying depression that got labelled schizophrenia. These labels (and the drugs that are prescribed to treat the symptoms) are increasingly interchangeable (but not always effective).

Here’s what I know after fifteen years, and it’s not much. The treatment for what is called serious mental illness is woefully hit and miss. Nobody “gets” it. Psychiatrists haven’t much of a clue about what to do, and, despite years of trying, neither have I. We are at the mercy of the latest research results that may or may not help our relative. I had understood for many years that antidepressants were not recommended for schizophrenia, as it was thought that they could drive the person into mania. My husband was all in favor of trying one, Dr. Stern and I were not. Nobody even raised the possibility of OCD in Chris’s case.

I had no idea that motor tics were a sign of OCD and I’m guessing that this nugget of information is something that has come out only within the past decade. I recently stumbled across a page from the Mayo Clinic linking motor tics to an underlying symptom of schizophrenia. (Never heard that one before. Have you?)

I don’t know if these promising changes will last. Who knows what Chris’s future holds? I’m optimistic. He’s has a lot to give.

Parting thoughts

  • Trying anything is usually better than trying nothing. (In my experience, all interventions, coming from a place of love, lead to small improvements).
  • Learning good communication skills is essential.
  • Be an advocate for your relative. When it comes down to it, you’re on his side, not the doctor’s. Leave no doubt that you want what your relative wants and you will try your best to make it happen.
  • Holidays bring added stress.
  • Drugs have their place, but keep them as low as possible and never stop searching for a drugless alternative.
  • Not all doctors are automatically wrong. Be open to what they have to say.
  • Take an interest in this most intriguing condition. Enjoy the mystery.
  • Lighten up. The journey has its moments.
  • Look after your own health.
  • Live in the moment.

Someone who did have a clue about what is called mental illness was author Hermann Hesse, my go-to person for his reflections about journeys and discovery. Chris and I leave you with this:

“One must find the source within one’s own Self, one must possess it . Everything else was seeking — a detour, an error.”
― Hermann Hesse, Siddhartha

Is neurofeedback the future of psychiatry?

It’s nice to be back to some semblance of a routine after the holidays. I had back-to-back houseguests, twelve in all if you include my husband and two younger sons who flew over from Europe. No time to even think about a blog post until now.

The guests have gone home and the glass ornaments has been put away till next year, so here’s an update of what’s been happening. Chris is seeing a psychologist for his motor tics in addition to the psychiatrist who seems to there as a placeholder only. So far, Chris has had only one appointment with him. Chris’s first and last appointment was in October. The next one is for the end of February. This is managed care, I guess. I’m not actually complaining, as the lack of attention can work in the client’s favor. The client should feel liberated enough to manage his own care. That’s my spin on it, anyway. Or, maybe his psychiatrist is busy studying neurofeedback. More about that later.

Military language seems to have made steady inroads into everyday American life over the past few years. My husband and I noted that our visits to our new family doctor are considered “encounters” according to the printed reports that we are given on leaving the clinic. “Do you think, though, if we called the office asking for an “encounter” they’d understand what we mean?” he asked rhetorically. We’ve been hearing a lot of late about government workers being “furloughed,” rather than being “sent home.” My reminder that an automatic bill payment  was going to be “drafted” from my account was mind bender. Had to read and reread it several times before realizing that my account was going to be debited. In banking terms “draft” to me means to prepare a cheque, not to take money out of the account.

Chris is enjoying his new recovery program, which is a privately funded vocational training center. The vocational part is helping people with Chris’s diagnosis gain skills needed for entry level jobs in the service industry. The staff doesn’t put a cap on their expectations as to what someone is capable of achieving with their life, but the idea is to start slow and gain confidence. Chris has been going most days and often comes home dead tired. Good. It’s about time. He seems to be getting by on very little to no medication. He’s got traction under his feet. . . .  

. . .  if it weren’t for the motor tics that continue to plague him. The next stop for us is NEUROFEEDBACK which promises great things – a cure for all kinds of issues that make concentration and focus difficult. It works on PSTD, OCD, Tourettes, bipolar, disorder, schizophrenia, depression, etc. Neurofeedback talks a good game. If we believe the promise, it is the future of psychiatry and will turn psychiatrists into neurologists. It will complement the work Chris has been doing with Focused Listening. We’ll see how far he can run with it. 

Fare thee well

I said goodbye to Jennifer a couple of weeks ago after making two quick trips out to see her in the space of a few days. On the first trip, I brought her a pretty floral dress picked up on sale that I thought would look good on her. She was delighted and said she would wear it to church that weekend.

To put an optimistic spin on whether she will do the Focused Listening program that I have been encouraging her to do, the answer is she has NOT been doing it, and my hope is that she will turn to it in future when she’s in a state of mind that will allow her to take more control of her health. To underscore this message, I typed out a letter for her that I slipped into the dress bag. I said that the only real gift I could give her was the music program.

On my final visit, I brought along a mutual friend who is keen on checking in with Jennifer from time to time. I’ve instructed my friend in the basics of the music therapy and she’s in charge of some money donated by our Club’s Board members that is earmarked for further equipment if there is a need.

Jennifer asked us if on our way home, we could to take her back to her old flat (15 kilometres away!) so she could get in her daily 3-hour walk back to the hospital. It was a blazing hot day. She doesn’t use sunblock. I noticed that Jennifer was back to wearing flimsy slippers, not the sturdy walking shoes she’d gladly accepted from me on a previous visit for exactly that purpose. I wince when I think of her walking all that way in the heat in those shoes. I’ve dealt with the same lack of follow through or understanding of protecting one’s health and comfort with Chris.

The difference between her and Chris? Chris lives with his parents and I’m constantly in his face about wearing sunblock, wearing the right shoes, and doing some useful exercises to improve his mental health. Jennifer’s care has been entrusted to the state. I’ll never figure out why so many parents spend so much of their energy trying to get the state to parent their grown children. I can well understand the impulse, but when you see that the state is an imperfect parent, and always will be, wouldn’t it make more sense to hunker down with your relative for far longer than you would care to parent, and focus, at the very least, on protecting one’s physical health?

Fare thee well, Jennifer. I hope that in time you will figure out what you need to get to a better place.

 

 

 

 

Resume the resume

I’ve been helping Chris spruce up his résumé this past week. It’s not targeted for employment, it’s more of a snapshot of what he’s been doing in the past few years, which is lots, judging from the content. There’s all of his chorus and solo work as a member of a musical theatre group and the church choir, as well as community service work, along with his part time course work.

What is not evident from looking at this very impressive list of accomplishments is the behind the scenes frustration trying to make sure he got to the places he needed to be on time. There were so many no shows and late shows on his part. Chris often didn’t realize that a rehearsal had been cancelled or changed to a different location. He got on the bus, went all the way there, only to discover a darkened hall. Or, he was so slow getting ready to go out that I had to drive him to make sure that he made a timely entrance. He was usually late for choir practice. I can’t tell you the number of times that he was late to a class, so he didn’t bother to go. The number of missed or partial voice lessons: “I don’t want to receive a message Ever Again! on the answering machine from your teacher wondering where you are.” (And then it happens . . . Again.)

In reviewing the résumé, Chris told me that he recently went back and completed the two week certificate course that he had walked out on several years ago. (Too many people in the class back then, his head wasn’t in the right place, etc.) Tying up the loose ends by resuming what he started seems to me like very good news, indeed.

interesting that the English word “resume” is résumé in French.

The error of science when it comes to schizophrenia

This is an essay I wrote for the M.O.M.S Movement, a MindFreedom.org sponsor.

My son’s story is not nearly as dramatic as some of the other mother’s stories here on this website. He has not been incarcerated in prison due to his behavior, nor has he spent years on a cocktail of powerful antipsychotic medication prescribed in too high doses. My son’s story is typical of what often happens to sensitive, intelligent young men who leave the family nest for the first time and are not prepared to do so. This leaving home period often occurs around the age of 18 when the individual attends university or enters the military.

My son left home at 18 to begin university. His increasingly odd behaviour began to raise concerns for his father and me during his last year of high school. Like many other parents, we were worried and perplexed, but hoped for the best — that he would find his footing at university and return to being the sensitive, intelligent son we thought we knew. But, of course, life doesn’t work that way. My son ended up in a psychiatric hospital in Toronto during the first term of his second year at university. He had barely managed to survive the first year, and was put on academic probation. The psychiatrists at the hospital said he had “schizophrenia” and my husband and I took them at their word. The diagnosis was devastating, and negatively informed the way we interacted with my son for the next few years. After all, he had a damaged brain, according to the doctors, he was most likely a chronic case, and the drugs were the best way to manage this “disease.” For the record, my son did not smoke pot or indulge in other recreational drugs. His was a classic case of young man’s schizophrenia that is not drug related.

Back home in Europe, we enrolled my son in a two year psychiatric day program that he reluctantly attended every day from 9 a.m. to 3:30 p.m. At first, my husband and I thought a medically-supervised program was a great idea, but then the cracks began to show when I decided to learn more about the “disease” of schizophrenia.

Here’s what I learned from the author Hermann Hesse, for example:

The mistaken and unhappy notion that a man is an enduring unity is known to you. It is also known to you that a man consists of a multitude of souls, of numerous selves. The separation of the unity of the personality into these numerous pieces passes for madness. Science has invented the name schizomania for it.

Rather than treating my son as encompassing a multitude of souls, or numerous selves that needed to come together into some sort of coherent whole, the program attacked him with the zeal of all that the Western medical/pharmaceutical industrial complex could offer. This superficial treatment included cooking classes, movement classes, acting classes, group therapy, and of course, medications. There was a large staff of social workers, psychiatrists, nurses and occupational therapists to oversee the activities. The program’s approach sounds very good (money is being spent on the problem!), but I began to feel that my son as an individual was being sacrificed to the goals of program overseeing his treatment. My son surely must have had good reasons for going “mad” and the staff at the day program didn’t seem very interested in finding out why his personality had come unravelled in the first place. After all, there is no reason to investigate individual cases if “schizophrenia” is a known biochemical imbalance and your salary is dependent on promoting the disease model, is there? He left the day program after twenty-two months, as much of a mystery to the psychiatrists when he left as when he entered. Though he was marginally better he was still not able to interact socially and was grossly overweight due to the medications.

The rest is history. My research told me that my son could be put back together again with time, with empathy, and by finding therapies for him that helped his body reconnect with his mind. I learned to focus on the person, not the disease. Remember — the original diagnosis stops many people in their tracks and they don’t look further for help because they have “bought” the invalid disease model. I started a blog, Holistic Recovery from Schizophrenia: A Mother and Son Journey and am hoping to publish a mother’s memoir where I discuss the many unusual and highly interesting alternative therapies that my son and I embarked on.

My son is now 27 and is not the person my husband and I hoped we would get back when he was 18 and this ordeal was just beginning. That person wasn’t a real person. My son is becoming an authentic personality. He started out in university thinking (but without passion) that he was headed for a career in science, and in the intervening years he has rediscovered a talent that he was ignoring in himself and that is music. I’ll end this discourse with the remainder of the above quote from Hermann Hesse that explains the error of the scientific model of this so-called disease.

This error of science has many unpleasant consequences, and the single advantage of simplifying the work of the state-appointed pastors and masters and saving them the labors of original thought. In consequence of this error many persons pass for normal, and indeed for highly valuable members of society, who are incurably mad; and many, on the other hand, are looked upon as mad who are geniuses…This is the art of life. You may yourself as an artist develop the game of your life and lend it animation. You may complicate and enrich it as you please. It lies in your hands. Just as madness, in a higher sense, is the beginning of all wisdom, so is schizomania the beginning of all art and all fantasy.

― Hermann Hesse, Steppenwolf

Postlude

Postlude: For behold, darkness shall cover the earth  (G.F. Handel) Soloist: Christopher Forbes

On Sunday Chris sang the Postlude in church, accompanied on the organ by our choir director (his voice teacher)

This is a lengthy, difficult piece. He got a standing ovation.

Two weeks ago Chris had a one hour telephone counseling session with career intuitive Sue Frederick. Blending numerology, astrology and her own intuition, she introduced the idea to him that he was, among other things, a non-traditional healer and suggested several scenarios that he should consider: Acting, healing, sound therapy and psychology. She’s big on using your pain as your fuel. She could definitely see him on stage.

Then, seemingly out of the blue last week, Chris’s sound therapist called to ask Chris if he would be interested in enrolling in his new course in sound technology. Of course he would! Last week Chris also attended the first rehearsal for Gilbert and Sullivan’s Trial by Jury. He’s in the chorus.

Chris gets discouraged at times because he thinks that he doesn’t know what he wants to do in life and life is passing. He’s thinking he’ll never catch up. I suggested that he drop the pretext that he is not on his life path and consider the evidence that he is already on it and has put years into it.  I’ve suggested to him to stop worrying about making money through traditional career choices, but that he should consider upping his game by taking more voice lessons and maybe some acting lessons.

Here’s a recap for newcomers to this blog. In my blog I try to convey a positive message for parents whose child has been given a diagnosis of schizophrenia. The road through recovery is often longer than we would hope, and there are ups and downs. Chris is now 27 years old. He did not finish his undergraduate university program. He left university seven years ago and has been living at home ever since. He doesn’t have have a job. So far he has activities.

If you are new to schizophrenia, seven years seems like a long time not to be employed and to be living at home with Mom and Dad. This is probably not what you are hoping to hear. Some people recover relatively quickly using megavitamins, but a lot do not. There are many complicating reasons why instant recovery does not happen and my blog demonstrates many of these reasons. For people like Chris, and very likely your son or daughter, recovery takes time, a lot of time. I learned the hard way what happened to Chris when I grew impatient with his progress. I delayed his recovery through my impatience.

In order to do right by recovery, rather than focusing on a timeline, think of your child and yourself as embarking on a long, but exciting journey. Getting it right can’t be rushed.

Progress report from Chris

In the cranial-sacral therapy I have been doing for a few weeks, comfort is key, the therapy is intimate, you are placing your body into the therapist’s hands so it’s best to make the most of your time and listen to your feelings. At our last session the therapist stressed the importance of “mind-body dialogue,” keeping our thoughts firmly grounded in our real-world self. Strong feelings and judgments have their effect on the physical body and during the sessions I am encouraged to notice how certain thoughts are received, if they manifest themselves as tension.

Sound therapy continues to be a source of wonder and amazement. I’d never pay as much attention to a teacher at school or my GP, probably because my ST has all these cool gadgets, a lakefront view and a portrait from the adult version of “The Little Mermaid.” At each session after he plays his kaleidoscopic mix tape we share our impressions of what happened. I say this allows me to see clearly into my past, and he says each sound has with it a certain feeling associated with it. The channel of time is opened up.

Dr. Stern, my psychiatrist has all but said “reduce Serdolect at your own rate.” She genuinely supports my coming off this particular medication and is leaving it up to me. I’m down to about six milligrams from eight, and I could be as low as four by now if I paid more attention to the schedule for reduction prescribed online. Despite the lazy days of summer I’m more than willing to go for a jog in the morning or swim in the evening, partly as an effort to keep my weight down which has shot up again even over the past month.

I wish I’d paid more attention to my brother’s advice to find a job or a course to pass the summer because I don’t have anything to look forward to from one week to the next. Like many other hopefuls to the job market I’m throwing in my lot with a local technical school for computer training in the fall. It will be tough; I’ll have to work with younger people in a non-native language for me, learning something I’m not absolutely crazy about, but it will hopefully lead to better things. Thankfully there’s someone working with me who better grasps the language and the school’s policies. One of my goals is to find someone who wants to learn English to do things together and share language skills.

Chris Forbes

Desert matrix

Chris’s report on his fifth sound therapy

Last Friday I went out for my fifth session with the sound therapist. I was feeling sleepy, yet I was eager to begin. We made small talk about travel and music. The therapist introduced me to an idea, which I have found to be one that’s been recurring, via well-intentioned adults namely, who am I, what is my purpose and what am I to do with my life? He explained further that people often miss their calling in life, and spend years working in a job they hate or in regret over missed opportunities. I told him I would like to teach people, or be someone who is respected and looked up to. What I was trying to communicate was that I still look for validation from other people, and that I believe that I could be content in such a role. I was feeling ambivalent about his questions, as I would resent his persistence which at once exposed my insecurities and promised a recovery.

For the first part of the therapy, we listened to colors as usual. I was supposed to imagine each color, and I tried this time to see what each color meant to me. I remember the middle band colors, yellow and green, I imagined like earth colors, sand and grass, really vast and beautiful; blue and violet I saw as people and human activity. The colors appeared like emotions naturally and gently, as sunlight rolling down a hill. The therapist told me he had never (or rarely) seen such well defined color bands from visualisation show up on his meter.

For the second part, he told me of societies which in the past sent their youth into the wilderness to search for guidance, who were welcomed back into the tribe if they emerged but were not expected necessarily to return. Now, was I comfortable to pretend that I know myself, without having to go into the wilderness, or do I want to find out more of life than I know already? The therapist then asked me to imagine I was entering a desert from which I could not return as I came, and posited I may find someone there, bringing a message. I saw a cactus, but it was enormous, filling up my field of view, and I couldn’t get past unless I let it prick me. Then the view opened up and I could see for a mile around. There was nothing remarkable until I began to imagine myself thirsty and soon I was surrounded by cacti once again.

As I lay on the ground, my vision shifted to that of an eagle, or bird/man, and as he flew towards me lying on the ground, we became one animal, and I felt held up high by a strange force; and at last I started to fall towards the earth because my right wing was broken. At this time the sounds finished and I opened my eyes. I noticed that at the end I was ignoring the broken wing and was happy just to not fly properly. This must show how we need something extra to return home from the desert, the awareness that we are not fully healed; the feeling of being lost before finding my wings is the same as the insecurity of flying with a broken wing. Having no wings and crashing with a broken wing are the same thing, and if you can’t fix your wing you can stay on the ground, but if you want to fix it you have to give up roaming the desert.

Information overload

Here is an e-mail I received from the sound shaman in response to Chris’s latest write-up of his experiences undergoing sound therapy.
http://holisticschizophrenia.blogspot.com/2009/11/sound-shaman-as-therapist.html

“Thank you Rossa, I am glad that we seem to be making positive progress. Chris is a wonderful and deeply sensitive young man, and in my opinion, he needs to gain a deeper understanding that the mind, with it’s endless stream of chatter and unceasing kaleidoscope of imaginings, is not who he really IS.

We have a serious problem in our modern society: it is that we have forgotten what it is to be silent. Our world is trapped in an uncontrollable spiral whose velocity is in the danger zone. Young people are being subjected to an ever schizophrenic society – just watch an hour of MTV, the Saturday morning cartoons, or a typical video game – the number of messages evoked through sound and image is equivalent to what we (as parents in our generation) would have been exposed to in almost a year of media. In earlier generations, this amount of new information would have been absorbed over decades. It is no wonder that our children have difficulty concentrating, sitting still, or thinking coherently – much less understanding their emotions as they are being bombarded with largely irrelevant, incoherent, and manipulative information at an ever increasing rate. It is unlikely that this frenzied multi-media phenomenon will change in the near future, thus it is more important than ever to find ways to offload or discharge this very negative influence.

As we can demonstrate with measurements, our thoughts influence our electrical field, which in turn influences the atomic and molecular cohesion in the body. The rising incidence of disease in children in modern societies, such as allergies, psychological problems, etc., is not just a result of environmental pollution or bad diet, rather I believe, that it is very much related to the disturbance of the body’s electrical field due to an oversupply of sensory and conceptual information. To heal, we need not medicate our children or give them ever more activities, rather we need to teach them to appreciate silence, stillness, and relaxation. Observing the flow of a river in the forest is far more therapeutic to our information overloaded children than any antidepressant!”

Myths are public dreams, dreams are private myths*

Chris’s notes on his second out-of-body experience induced by sound

“It’s almost impossible not to see as though nothing’s changed since the last sound therapy. I could pretend that I’ve reached Nirvana but I’m seeing everything the way I always have, no psychedelic colors or even levitation or lightness. I believed I could leave my worldly attachments behind, but the difference has been in what I don’t see and especially don’t hear anymore. I can hear myself and see myself, and this has made me wiser. I will try to explain. It will be difficult.

During the color therapy, I saw vivid images of various scenes with various people, and I was in them too, but with a difference. I saw scenes in which I have pictured or even wanted myself to be in; they were anything from choosing what to wear in the morning to having sex with someone I’ve felt attracted to, to participating in a Nazi party rally! As it was explained to me later which I only perceived at the time, my insecurity with these images, often grotesque and violent, was rooted in the fact that I was really an observer. I placed expectations on the outcomes of each of the dramas, and with the sound therapy I was transported to each of these dramas, which were rooted in some subconscious fantasy from God knows what. As I heard the colors and shapes, I could see that my “mind” had been tricking me; or rather my body which was wanting to make my mind believe that my feelings were my body, were somehow inferior to the form of a beast which I had allowed my body to become. Indeed, having sex I could see that it was not sex but rape to my mind, and at the Nazi rally I felt a tingle in my arm as I raised it in a salute! I say only this for myself and no-one else, but what my intellect knows is “true” and horrible only exists because of the corrupt nature of my own body, and my belief in human failings.

Afterwards, the sound shaman sat me down to chat about the experience, which I needed because of wanting to understand my experience and what went on. I don’t remember everything he said to me, but I believe that it was said that in those “fantasies” was my true self, i.e. my physical manifestation that I’ve built up in the mirror is partly false and a deception. I believe that when I’ve chosen to follow an abstract goal, committing intellectually, emotionally and physically but without a true purpose then a split was caused in my being which is why I haven’t been able to find a true calling yet.”
_______________________
*Joseph Campbell