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

My guest post for Virgil Stucker

In August I answered an invitation from Virgil Stucker and Associates to submit a post to their site in anticipation of September being the month dedicated to mental health advocacy and suicide prevention themes. The request was open-ended: I could write on basically whatever I wanted to write about, and if I had any particular treatments that I thought others would want to hear about, they wanted to hear about those, too. I thought that was a pretty decent invitation because it didn’t filter what was considered “acceptable” treatment from “unacceptable treatment.” Anyone reading my blog this past year knows that I’ve been pushing Focused Listening, so if you don’t want to hear any more about this treatment, you can stop here. On the other hand, if you are curious to read different perspectives on mental health recovery from parents and professionals, you can find them on the Virgil Stucker and Associates blog.

Virgil Stucker has over thirty years of leadership experience in the recovery movement  (encompassing therapeutic communities and directorships of not-for-profit organizations). Virgil Stucker and Associates empowers mental health decision making for families and individuals facing issues due to serious mental illnesses such as depression, anxiety, bipolar and personality disorders, schizophrenia and schizo-affective disorder as well as substance abuse.

Rossa Forbes reflects on where an open mind led her when she sought help for her son, who was diagnosed with schizophrenia.

August 29, 2018

Guest Post

Guest post by author, Rossa Forbes.

I wish recovery were simple and straightforward for people like my son Chris who have experienced a serious mental illness. Often parents speak about recovery in terms of getting their old son or daughter back, meaning I suppose that their child’s personality, skills, and accomplishments before the onset of psychosis were pretty darn close to being as good as these things can be.

Read more here 

 

 

Recovery and peer support, or the medical model. Why must it be “either/or”?

Today’s post is from Pete Earley’s blog. There is yet another battle currently being waged in the United States, this time over the appointment of the Assistant Secretary of Mental Health and Substance Abuse. The introductory paragraph is clear as to what issues are at stake.

Harvey Rosenthal: The “Worried Well” – A False Narrative Meant To Divide

BY PETE EARLEY

(5-15-17) I bumped into Harvey Rosenthal recently at the National Council on Behavioral Health Care convention in Seattle and invited him to write a guest blog. Harvey is Executive Director of the New York Association of Psychiatric Rehabilitation Services and one of the best known advocates for recovery and peer support services. Given what seems to be a constant battle being waged between the “medical model” that focuses on medication adherence and the “recovery model” that focuses on peer support and other social services, I thought it would helpful to hear his point of view, especially because a new Assistant Secretary of Mental Health and Substance Abuse will soon be appointed.)

Re-Balancing Federal Policy Need Not Have To Choose Between Extremes

BY HARVEY ROSENTHAL

For far too long, advocates for court mandated outpatient commitment have promoted the false narrative that recovery, rehabilitation and peer support providers and advocates don’t want to serve Americans with the most serious conditions…..and that our motivation in supporting the redirection of public funds from hospital to community is simply to capture public dollars for our own purposes. In contrast, these groups have outrageously played upon unfounded connections between violence and mental illness to promote a singular one-size-fit-all prescription of “more meds, more beds and more coercion.”

Along the way, these groups have promoted beliefs that a recovery and rehab focus only applies to the ‘worried well’ and excludes the most distressed, that peer support is inevitably against treatment and medication and that rights advocates are only interested in helping people in the greatest need to avoid such treatment?In recent years, subscribers to these beliefs have succeeded in capturing the attention and support of conservative Republicans, think tanks and the tabloids. They have heavily informed the efforts of self-styled mental health reformer Rep. Tim Murphy and are apparently poised to see the appointment of an apparently like-minded first HHS Assistant Secretary for Mental Health Services.

Advocates across our spectrum must join together to educate both the Senate that will be confirming the first HHS Secretary Read the rest of the post here

 

 

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.

 

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!)