Recovery: Pushing them too soon?

In case you’re getting impatient with the slow progress your relative may be demonstrating, I thought I’d share Chris’s experience taking courses. The ability to pay income tax (and, by my inference, to succeed at training courses) is almost the gold standard for recovery (in addition to getting along well within the family and the wider community) according to Doctor Abram Hoffer.

Here’s a long list of the courses Chris attempted, beginning at about age 21, a year after he was first hospitalized.

  1. Audited an art history course (managed to hang on mainly due to the heroic efforts of the professor to accommodate his behavior)
  2. Passed a political science semester course
  3. Quit another polysci course due to worsening symptoms
  4. Enrolled in a month long physics course and lived away from home – didn’t keep up with assignments and, obviously, failed. Final grade about 5%, if I recall.
  5. Failed to submit final work for a communications course
  6. Took refresher math lessons with a tutor; too distracted to concentrate
  7. Enrolled in a three-week French course – quit about day 3. Too anxious.
  8. Took an online music theory certificate course for a semester – I think he passed. It was so long ago.
  9. Resumed piano lessons – didn’t practice much. Stopped the lessons.
  10. Enrolled in a three-week computer course. Passed first module
  11. Enrolled in second three-week computer module. Failed second module
  12. Enrolled in an intensive French course – passed
  13. Enrolled in the next level of the French course – passed
  14. Enrolled in a sound engineering certificate program for one year – not quite making the grade. Quit.
  15. Enrolled in online math course – in progress
  16. Resumed taking piano lessons – as of last week

If I had to do it all over again, I wouldn’t have encouraged Chris to become a student until he was much older and further into his recovery. Chris simply wasn’t ready until HE decided he wanted to do something more, which began around the age of 28 (course number 11 onwards). Getting there has been slow and unpredictable, but Chris has changed a lot and is finally seeing that he if wants to make something of his life, only he can do it.

 

REAL LIFE starts with a dream (guest post)

“If the doors of perception were cleansed, man would see himself as he is, infinite.” Aldous Huxley, written in my yearbook 2002

“Met him what? he asked. -Here, she said. What does that mean? He leaned downward and read near her polished thumbnail. -Metempsychosis? -Yes. Who’s he when he’s at home? -Metempsychosis, he said, frowning. It’s Greek: from the Greek. That means the transmigration of souls. -O, rocks! she said. Tell us in plain words.” James Joyce, Ulysses p. 64, The Modern Library

I’m to tell you about a dream I had, a bad dream, but one that leads me to acceptance, not, in so many words, giving in. In itself, it has no meaning for anyone, and I expect the following is not of general interest, except something has to put an end to this story.

I still loathe myself often, loathe all of my circumstances and it doesn’t matter how many people I ask for their point of view. That is, I feel evil. I don’t want to convince you of this at all, and I was hoping distracting myself with James Joyce might, I don’t know, put a rosy hue on things. There is one alternative.

(There was a retired teacher whom I would meet from time to time on the corner, I mention now that she was a teacher of English, and when I told her my name, she straightaway nodded ‘Dedalus’, Stephen, my namesake of Joyce’s Portrait of the Artist as a Young Man and Ulysses.) When sometimes I find life so very ordinary, I tell myself that must be because I’m something like the Wizard of Oz behind it all. This cannot be explained, I reckon, it must be experienced, much like Joyce’s books, and I find I tell others I’m ‘away with the fairies’ thereby placing myself as an odd relative, out of reach. Who is deceiving whom?

In my dream, I awake from a deep sleep (called so softly but I’m waiting expectantly) and in a flash, I’m running ahead, there’s so much to do, my recording session, my family will be here tomorrow, wow! I’m really achieving something, being somebody! And then….

Is it raining? I pause to try to read the weather, then I see my body blocking every point of view, any feeling, and I disbelieve in myself. Any observation or attempt at thought pulls me toward the ground, a beast of prey. I can’t see my clothes, then my body dies part by part. I’m urged to forget everything, and as I wake, I challenge myself to let go.

The disapointment concretely set in, that just as I could visualise my own life, boldly independent, but it’s just a story, and what’s more, I identify my dreamself as Stephen Hawking, and so I tell my mother later that morning, and next my psychiatrist. Imitating Hawking, I try to think through the drama. It’s impossible. Still fresh in my memory, I know then I believe Stephen Hawking to be a true hero, his inward world matched his outward reality, his thinking so peerless, singularly screaming I AM WHO I AM to the whole universe, but unable to find and name God. I want to see things from his eyes, paralysed, like Abraham Lincoln at his memorial sitting, that Reverend Martin Luther King Jr. could stand there and proclaim, I have a dream, a word, a thought, and I hope, realize his relationship with God was just once, mutual.

I tell myself this, but it’s a rationalization. Why shouldn’t I be able to just collapse, and truly it will mean nothing? I don’t feel like I’m achieving anything, except something to do tomorrow. “Curse your God and die,” said Job’s wife, but I am not Job. I remember being sad for the writer Douglas Adams when he died, just collapsing on his treadmill. Now, I think, that must have been some relief. I didn’t know Douglas Adams, and if he collapsed in my arms, I wouldn’t have tried to resucitate him but stupidly, called for help.

If I acknowledge that the alternative to fear and loathing is action, and I’m drawing again on my English classes with Shakespeare, and that I don’t have the genius of Stephen Hawking, well, then, I think the letting go of life will be continual, that whenever I act in favour of change, I also release my desire for change, and that I may be getting in my own way by being so stubborn. I don’t want to justify myself continually, it is very hard on my own sense of self. The thing is, if I’m really stuck, like quicksand, I can only let go, and how then can I be afraid of death? I can’t lie to you about how afraid I feel, I’m deceiving myself, and getting deeper into the sand.

Then I guess I’ll really have to write my own account of my life where somehow it doesn’t end where all the details have been revealed but somehow create a story I can love where the end is only the beginning.

Recovery in a nutshell: Self worth

In this trailer for Art and Craft, a documentary about his life as an art forger, Mark Landis, who was given a schizophrenia diagnosis as a teen, has a lot to say about recovery, if you listen carefully to what he is saying.

Watch this clip then imagine being a young man diagnosed as schizophrenic, whose troubles are compounded when people shun him and consider him useless. He retreats into a lonely adult life of watching television. Were it not for his hospital art therapy class, his talents in copying works of art might have gone unrecognized and he may not have found a calling.

Listen to what he has to say about why he masqueraded as a philanthropist giving away works of famous painters he had forged:

“I got addicted to being a philanthropist I wasn’t used to have anyone treat me like this. . . Everyone was so nice and respectful —things I was quite unfamiliar with.”

“It seldom happened that people were nice to me.”

“We all like to feel useful. Whatever ability we happen to have we like to make use of it.”

“(This documentary) gave me something to do because I’m really just a lonely old shy man.”

Imagine, for a moment, if people close to Mr. Landis learned early on how to draw him out as a human being. He might not be the lonely old shy man he says he is today.

The diagnosis, and the way friends and family react to the diagnosis, sets up feelings of hopelessness and despair for all. How can a solid recovery take hold in this environment?

See also Elusive Forger, but Never Stealing

An excellent course in the fundamentals of recovery:
Families Healing Together

Dress for success

The appearance this past week of two myth-busting articles on schizophrenia in the New York Times, was long overdue. Still, I couldn’t help firing off a cranky comment to the Well section of that paper to argue that it is absolutely ludicrous that mainstream medicine for years has gotten away with promoting the dumbing down of patient expectations.

Think about it. In almost every other area of endeavor, Americans are encouraged to self-promote, to aim big, to dress for success, to follow the American dream. Everywhere . . . except for a schizophrenia diagnosis. You would think, wouldn’t you, that emulating what more successful people do would be part and parcel of  any recovery. But, apparently the wisdom of this idea has escaped much of the mental health industry, which now appears finally ready to STUDY THIS PHENOMENON  further! Oh, for heaven sakes! If you tell people they are sick, most people will believe you. Knowing they are “brain damaged” and have “a biochemical imbalance” will make the road to recovery even harder.

Researchers have conducted more than 100,000 studies on schizophrenia since its symptoms were first characterized. They have tested patients’ blood. They have analyzed their genes. They have measured perceptual skills, I.Q. and memory, and have tried perhaps thousands of drug treatments.

Now, a group of people with the diagnosis is showing researchers a previously hidden dimension of the story: how the disorder can be managed while people build full, successful lives. The continuing study — a joint project of the University of California, Los Angeles; the University of Southern California; and the Department of Veterans Affairs — follows a group of 20 people with the diagnosis, including two doctors, a lawyer and a chief executive, Ms. Myrick.

It was hard for me to keep a straight face when I read how “surprised” the research community was when it discovered this “hidden dimension of the story.”  In the meantime, my son Chris goes about his daily living while we continue to extract him from the clutches of his dismal diagnosis. He is out most evenings in rehearsals for the upcoming Christmas pantomime, Jack and the Beanstalk. He’s a member of several choirs that practice once a week. If he were living back in North America, and not the life of an expat in Europe, I feel sure that he would have a paying job in addition to all of the volunteer work that he does. The work permit here is not an insurmountable stumbling block, but it is a process to go through that we haven’t managed to give much thought to until recently. I continue to push the idea of his going back to university to study voice and music. Chris and his brothers, Taylor and Alex, are getting along well and they are doing their bit to encourage Chris to develop his full potential. Why should anyone settle for less?

Two blog posts worth reading

I have come across two blog posts that I think deserve a wider audience. The first is written by WillSpirit, a medical doctor who is now asking those of us who most understand mental distress to speak up. Please read the full post here. I have excerpted two paragraphs below.

I started reading textbooks of psychiatry, thinking I could help others now that my own problems had receded. I applied to psychiatry residencies and psychology graduate programs, but was rejected by them all despite my rather stellar academic background. It became obvious that the programs felt uneasy with my psychiatric history, which I’d disclosed in the naive (or stubborn) belief that it should qualify rather than disqualify me for work in the field. Now I had a new reason to suspect systemic problems in the mental health industry. If it fears those who have most used its services, how compassionate can it really be?

It’s time for those of us who most understand mental distress to speak up. We who’ve suffered with depression, anxiety, confusion, delusional states, and so on are in the best position to understand them, especially if we’ve managed to work through our difficulties to achieve a balanced, peaceful state of mind. We are also most aware that mental health problems as currently defined are not always negative. The ‘system’ has so focused on the shadow side of moodiness and perceptual alterations that the enhancing aspects have been forgotten. But most of us who’ve struggled with powerful mental states recognize that, properly harnessed, they confer a kind of grace.

The second blog post on recovery is by Pamela Spiro Wagner. I have been aware of her writing for quite a while now, but I perhaps unfairly judged her as too tied to the medical model of her “illness.” Without knowing her except through her skillful writing, she impresses me as an innate artist foiled and failed by the psychiatric system, which buries, not praises, those it purports to help. Through her own tenacity she has come to accept herself as an artist. My editorial comment is that the “system” can save a lot of people a lot of grief if it would recognize that creativity may produce bouts of psychosis.

Usually when anyone else but someone with a psychiatric diagnosis speaks of recovery they mean, full-out cure. Let’s not kid ourselves. When you recover from pneumonia, you get better, you do not have pneumonia any longer. When you recover from the flu, you are cured. When you recover from a broken leg, ditto. Yes, there may be residual damage, if you have a heart attack say, or pneumonia, but you do not still have the process itself going on, or you would not call yourself recovered. Rarely do people say that they are chronically IN recovery from anything but either a psychiatric illness or poorly controlled substance usage. But man, do we! The problem with this whale is that like Moby Dick it can lead you out to sea, capsize your boat and abandon you, floundering. What use it is to say, you are in recovery, if you remain miserable, despite all the medications stabilizing you so you are not “in the hospital” or “utilizing resources”?


Community myths about schizophrenia recovery

I came across the sad story the other day of Tom Cavanagh, a young, Harvard graduate and professional hockey player who killed himself.

For those closest to Cavanagh, his illness became apparent in November 2009 when he suffered his first psychotic episode. He was briefly institutionalized and, in what would become a pattern, responded well to medication and was released. He even joined the AHL’s team in Manchester, N.H., later that season, playing in 17 games before suffering a shoulder injury.

He was hospitalized again in April after becoming violent and breaking furniture in a doctor’s office. But he was well enough to begin this season with an AHL team in Springfield, Mass.

“It’s amazing how he was able to perform at such a high level, knowing what we do now,” said Riley, Cavanagh’s coach at Springfield. “But God only knows what he was dealing with outside the rink.”

One can marvel at the fortitude of this young man to keep himself together enough to get out and play professional hockey despite the diagnosis of schizophrenia, or one can wonder what was everybody thinking? I’m in the latter camp. Schizophrenia is a major crisis point, and it’s not business as usual. The business as usual approach to schizophrenia seems positive and encouraging, but it is not. I call it false positivism.

When we first consulted a psychologist about Chris’s strange behavior, Chris was two weeks away from going back to university a continent away from where we lived. Everybody’s expectations, including ours and Chris’s, were focused on that goal.  The psychologist seemed  to think that it was just a matter of getting the right meds and then Chris would be back on track at university. He suggested that we arrange an appointment with a psychiatrist connected with Chris’s university before classes resumed for the fall term. When Chris was admitted to hospital a few months later (still not on meds at that time), the doctors and social worker talked of the possibility of Chris resuming his classes, being on meds, and having a social worker drop in to check on him once a week. That dream was short lived as Chris actually got worse while in the hospital. He dropped out of university when he was released three months later.

A rosier outcome than was Chris’s at that time can happen, but how often does it? How realistic is it for someone to pick up their hockey, their studies or their job so quickly after receiving an earthshaking diagnosis? We know that people get short changed in mental health care because of the expense of time in Western cultures. We are told that pills will make us productive. Schizophrenia, diagnosised or otherwise, means that something isn’t working and it’s time for a time-out, a long time out. Perhaps this young man, Tom Cavanagh, was living out the dreams of his father and the rest of his family, and it got to the point where he couldn’t go on as he had been doing because he didn’t know who he was. “He would tell me that he can’t feel any emotion, that he can’t engage with people, that he felt disassociated and that this was the way he felt his whole life,” Joe Cavanagh said. 

Author Joseph Campbell sees a schizophrenia breakdown as an inward and backward journey to recover something missed or lost, and to restore a vital balance.  Don’t cut the individual off, work with him, Campbell advised.

People like Tom Cavanagh are given drugs and told the falsehood that the drugs are the best and the quickest way to manage the life you had before you got side-swiped. Your parents will be relieved and optimistic and you will become part of the larger community myth of recovery. There is no mention of spiritual and existential problems that need to be addressed. This scenario works until it doesn’t. Tom Cavanagh couldn’t sustain the myth. What he needed was a lot of therapeutic help and understanding up front. He would need intensive support for a long, long time, but he could recover. This is not part of the medication based myth of recovery.

Exposing the business as usual myth of recovery should put the spotlight back on real recovery as a long, slow process needing periods of rest and reflection and minimal to no use of medication. The basis of being told this should come from a place of optimism, that there is a brighter tomorrow and it will come, with effort, just not now. Sometimes doctors will explain recovery this way, but often what you are told comes from a base of pessismism. Doubt is interjected because the medical community, by and large, doesn’t believe in the drugless optimistic approach.  When the myth of the speedy recovery by drugs is exposed, the mental health community lies to the public again by telling us that there was never any chance anyway. They now tell us that schizophrenia is a life sentence. In Tom Cavanagh’s case, the doctor painted a picture to the parents that death may be the only release for a diagnosis of schizophrenia. The obvious question that I would raise would be then why did you lie to me about speedy recovery?

Cavanagh’s doctor sat with the family later to explain why Tom might have done this. He told them how the schizophrenia can manifest itself in males in their mid to late 20s. It can be, he said, a raging fire that grows out of control.“He painted a rather dismal picture of what the future is for someone with this disease,” Joe Cavanagh said. “That’s why we’re happy that he didn’t hurt someone and he’s not in jail.”

The myth of the medical cure and speedy recovery is once again being use to prop up the community myth of the unhealable schizophrenic.

Unconditional love

I’m reprinting this extract of Grainne Humphreys own story of renewal which was posted today at Beyond Meds. I urge you to read the post in its entirety because it shows you how recovery without drugs looks. Recovery without drugs looks very weird, but if more people were aware of the breakdown and renewal process, perhaps there would be more understanding that this is something that people have to go through, and they can do it without unnecessary recourse to the heavy duty artillery of drugs and doctors.

That being said, Grainne writes about how difficult it was for her family to be round-the-clock crisis managers. I can identify whole-heartedly with this, because I was emotionally and physically exhausted from being on call 24/7. Had the decision been mine alone, Chris would never have been placed back on medication. In this respect, it appeared easier for Grainne to have a drug free recovery, since her mother seemed to be the sole decision maker here. No messy arguments with a spouse over medication, no ultimatums.

Grainne attributes her healing to unconditional and unwavering love . I would like to stop here and reflect on that. Let’s assume that it is normal for a mother to love her child even if that love is imperfectly carried out. It is the conditions that we place on others that cause them and us stress. I think family members can bring about the kind of healing that mental trauma needs if we simply stop judging the other person and have the confidence to let them get on with their own growth and rebuilding in their own time in a controlled setting.

The things that healed my mental distress were the unconditional and unwavering love of my mother, my family and friends and the community I lived in. I was kept safe by this body of people. I am blessed with a tolerant and very loving family and a tolerant and loving community, something which to this day I do not take for granted. I now recognise this as a privileged position to be in. My mother and my step-father, Sue King, Carol James and Giana Ferguson being a few of my hands-on 24/7 team, taking it in shifts to be responsible for me, keeping me housed and fed and, if possible, occupied. My mother wanted to keep me out of hospital and off medication. The reality of this is her home became an acute crisis centre and I was a major disruption to the quiet routine of their lives. Obviously, this is not an ideal situation and it would be wonderful if there were places people could go that did not force medication on you if you didn’t want to take it to prevent the medicalisation of what is essentially a human experience. In the beginning I needed round-the-clock attention as is the case with anyone in an acute crisis and when this experience is not blocked or suppressed with drugs it is an enormous work-load for those involved. Saying that, my short time in hospital further down the line was not a bad experience – I was admitted after a suicide attempt – however, I later discovered that I could have been discharged but I was kept in to give my mother a break. In effect, for her mental health. This gives you some indication of the strain she was going through. No doubt, I was lucky that the psychiatrist who worked at my local hospital at the time I was admitted was progressive and humane. I escaped labelling and drugging, though I know this was down to luck and circumstance and who took care of me during my crisis.

Athletes and mental health sufferers unite!

I was listening in the car this morning to a radio interview with a sports psychologist. He was discussing the case of an internationally competitive skier who had suffered extensive head trauma. The psychologist mentioned that after major accidents like these there is often Post Traumatic Stress Disorder (PTSD) as well as the actual physical trauma.

The sports psychologist treats his athletes using visualizations and other psychological techniques. It occurred to me while he was talking that with professional athletes, the focus is always on getting them back to their former level of fitness and ability to compete. It seems to be universally expected. Athletes are considered society’s “winners.” All kinds of “right thinking” behavior is credited to them, from being exceptionally focused and mature, to being “intrinsically better” than the next guy, who is roundly criticized for quitting athletics early despite obvious talent.

You probably can tell that I have limited tolerance for putting jocks on Mount Olympus. What irks me is that positive expectations are lavished on jocks and the same cannot be said for those suffering from mental illness. Where are the sports psychologists for our relatives? Our relatives, too, have to get back in the game.

The radio interview discussed the long term prognosis for returning to the sport for the worst kinds of injuries, and the psychologist said that it can be done. He made it sound like it wasn’t even such a big deal. In several cases he cited, athletes even managed to surpass their previous records. The psychologist mentioned that PTSD and subsequent recovery can be delayed by people around the athlete, who, in their worried state, actually make the athlete doubt his ability to get back in the game. (That would be the high expressed emotion that I have referred to elsewhere on this blog.)

The sports psychologist discussed the importance of allowing time to heal, and not rushing back too soon because, thinking you are well before you actually are is not a good strategy. I have heard that, too, from psychiatrists, but the difference is that they were coming from a place of pessimism, not positivism. They believe schizophrenia is chronic and, of course, the medications treat everybody as if they were chronic.

So, the psychiatric patient is not getting the kind of treatment that star athletes get. The typical psychiatric patient gets lowered expectations, no hope of full recovery and ability to surpass the previous self. Nobody clues in the family that being worried hinders the individual’s recovery.

What’s so special about athletes that we can’t apply the same treatment to those suffering from mental health problems?

Who am I? What am I here for? Why you might be interested in what I have to say.

“Who am I and what am I here for” are the fundamental questions of our existence on this planet.

I am Rossa Forbes, a pseudonym for me. I became a new me, a wiser and more focused me, when my oldest son was diagnosed as having schizophrenia. That was six years ago when “Chris” was 19. His diagnosis forced me think about many things in a different way.

My blog is for people who expect more out of recovery than what they are currently achieving.

I was naive when I started on this journey. Over time I became very critical of the medical treatment Chris was receiving when I realized he wasn’t getting better, despite the huge amounts of money being spent. I expected “better”. I expected “well”. Doctors instead spoke about “recovery”. Recovery is such a vague concept. It seems to be associated with quality of life, another term that I abhor when it comes to schizophrenia. Who wants to be spoken of in terms of “quality of life” when you are young and your whole life is ahead of you?

BS (before schizophrenia) I thought life was pretty good. I still do, but it is much more meaningful. Schizophrenia is not like other illnesses. I do not really consider it an illness, so if you are looking for advice on medications and how to deal with schizophrenia as a brain disease, this blog is not for you. I do consider schizophrenia a “problem”. Something isn’t working well for the individual and it is certainly a huge problem for the family members. Problems can be solved, however. They take time and effort. Nobody said this was easy. A brain disease, on the other hand, sounds final. And, of course, expensive medications are prescribed for this brain disease. These medications also have rather serious side effects.

While I hesitate to even use the term “schizophrenia” in this blog, it is useful shorthand for a collection of characteristics related to someone who is having difficulties with living.

The purpose of my blog is to do the following and more:

1. Introduce you to holistic therapies that my son underwent (I tried most of them, too.)

2. Explain why a holistic approach is better than a medication only approach. Holistic allows that low doses of medication can be useful and often necessary, but should not be considered a long term strategy.

3. Stimulate a positive and even humorous perspective about the condition

4. Encourage you to think that the expected outcome of this condition is to achieve total health

5. Demonstrate that writers, artists, poets often have a better understanding of schizophrenia than your doctor does

6. Establish a platform for the book that I am writing (feedback is most appreciated!)