Monthly Archives: September 2012

Why Share Our Personal Recovery Narratives? A Tool for Respect!

Found this excellent article on the “vocationalvoice” blog. You can find the blog at http://vocationalvoice.com 

For recovery narratives posted on our Peer Support & On Our Way Recovery News site, check out “My 360 Degree Story“, “How Metacognitive Therapy Helped Me”,To Give a Life Back” and “I had Insight into My Recovery”.

Enjoy!

vocationalvoice: the integrated employment institute

I am grateful of a gentleman who shared his recovery story at a partial care program that I was attending in December of 1989. He traveled out of county working for Collaborative Support Programs of New Jersey, (CSPNJ) Inc. The guest speaker spoke of his challenges and the inspirational moments that gave him hope. He valued natural supports, acceptance of living with mental illness, achieving goals despite clinical diagnostic labeling, working full-time and more. Furthermore, I admired his courage to thoughtfully and intimately self-disclose his story with both peers and staff. His hopeful, genuine, and balanced narrative was exceedingly important to me.

I was submerged in lifeless depressive feelings, such as anxiety, stress, listlessness, apathy, isolation, invisibility, helplessness, hopelessness, worthlessness, anger, guilt, societal stigma, labeling, suicidal ideation, and more. I was a month shy of my 28th birthday when listening to my first personal recovery narrative/ lived experience presentation. I began to develop

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Knitting with Voices

As our last blog entry, I shared my experience of hearing distressing voices and the strategies I used to manage them.  However, not everyone’s experience of hearing voices is the same. The population of people with such experiences is just as diverse as any other population of people and so are the opinions folks hold – even when they have similar experiences and diagnosis.  I have recently met people who hear voices and don’t find them distressing. This is something quite new for me. I have also met someone who shared memories with me about a person who heard voices that were much more positive than my own. This is one of the reasons why not everyone who has these kinds of experiences necessarily needs enforced treatment. The story below is a good example of a person who heard voices, was untreated and was not violent. There is a danger in making generalizations about people, even people who share similar symptoms and diagnosis. Diana Epperson has graciously agreed to share her memories of “Mrs. Dunnell” below – memories that are quite different than the experiences I shared in our last blog entry. These are memories of voices that were helpful.     – Renea Mohammed

Knitting With Voices

by Diana Epperson

In good weather my mother and her neighbor, Mrs. Dunnell, would sit on the front stoops of their adjacent apartments in Queens, New York, knitting and talking.  It was 1957, my mother was in her early twenties  expecting me, her first child.  Together  the two friends knitted a full infant layette in greens, lavender, white and yellow.  This set of fine wool newborn clothes included a blanket, cardigan, hats, booties and, as I was scheduled to arrive in November, a bunting*.   By the next summer, “Dun Dun”, my garbled attempt at “Mrs. Dunnell”, became our beloved neighbor’s  name.  About a quarter century later, I wrapped my newborns in the same sure knitted pieces.

Knitted into the story of the layette is my mother’s story of a friendship. Having recently moved into the apartment in Queens, from a small room in Soho with a shared bathroom down the hall, she rarely saw her university friends and my father was mostly away at work and night school. After she met Mrs. Dunnell on the front steps, the two of them began to spend their days together, talking, knitting, drinking coffee, listening to the Boston Pops. The way my mother tells it, the two women relied on Mrs. Dunnell’s voices to help them through the most difficult parts of the knitting instructions, through the complex turns and knots of the yarn over and around their  needles and  fingers.  She claims there wasn’t  a conundrum Mrs. Dunnell’s voices couldn’t help them puzzle out.  When my father came home in the evening, the three of them often ate supper together. Dad remembered Mrs. Dunnell’s coffee, cake and hamburgers as the best he ever tasted.  The story goes, the voices recommended frying the hamburgers in butter, which explained their extraordinary flavor.

Though my mother remembers Mrs. Dunnell’s voices as a gift, she also sensed they were associated with the loss of her only sibling to rheumatic fever.  Their parents were “older” and Mrs. Dunnell had been her younger sister’s playmate and caretaker. She was about twelve when her sister died and my mother had the impression that it was then that voices “from the other side” became Mrs. Dunnell’s lifetime companions.

My mother sought out the company of this delightful neighbor and remembers, “we became very much like a mother and daughter”.   My mother says that Mrs. Dunnell was very natural in the way she would mention hearing voices when they were together, but “never spoke of them when your father or other neighbors were there. She and I really trusted each other.”  I’ve heard my mother laugh and confess when remembering her friend, “I wish I heard voices to tell me what to do”.

After my parents left New York, Mrs. Dunnell moved to an assisted living building. She was clever with numbers and did some bookkeeping to help pay for her rooms.  She died before I was six, but I  remember her clearly: she’s in a light, button down dress: her  hair is short and grey, bluntly cut with bangs; she is always bending towards me, always giving me something.  

*a  long-sleeved hooded sack that zips to the chin

Living with Distressing Voices: The Challenge and Some Strategies

Living with Distressing Voices: The Challenge and Some Strategies

By Renea Mohammed

Hearing voices can be a devastating experience. There have been times in my life when I’ve heard nasty, derogatory voices from the moment I woke up until the moment I fell asleep.  They were voices that watched me shower and made mocking comments. They were voices that argued I was stupid, lazy, a bad wife and deserved to be dead – among other unpleasant things. They were voices that told me those who cared about me would all be better off if I killed myself. Once these voices got going I heard them continuously. They’d wear me down and I made suicide attempts trying to escape them. I had no insight. I didn’t believe I was ill. I thought they were real.

I believed I was under surveillance too. This wasn’t nice either – but it was not nearly as bad as the voices.

People tried to get me on medication, but I did not believe it would help. Why would it help with something that is real? A psychiatrist told me about brain chemistry. I left the appointment under the impression that the medication would change my brain chemistry. If my brain chemistry was normal, I reasoned, then changing it would be bad for me. I was dead set against taking medication.

I think it speaks to the power of family and importance of family involvement that a family member – my husband – was able to convince me to try meds despite my very strong reservations. I tried it willingly only because it meant so much to my husband . I don’t think there is any worker who could have got me to do so voluntarily. Unfortunately the drug had side effects. I didn’t like them. I didn’t think it was going to help with anything. So I didn’t stay on it long.

Eventually I had my first hospitalization. There I was forced to take meds because I was seen as a danger to myself. I was on one for sleep and one for voices. The drug for voices had side effects that were actually worse than the voices. Again, I thought about suicide. But I knew the forced treatment was temporary and I’d be able to get off that drug. The knowledge that the forced treatment was temporary is what I hung onto during that first hospitalization.

I did complain about the side effects. But one side effect of the drug was that it made my thinking slow and foggy. I wasn’t as articulate as I normally am. I also didn’t know the words to describe what I was experiencing. People meant well, but they did not understand how awful I felt and so they kept me on the drug.

I’m lucky though. About four years after my diagnosis I found a medication that worked well for me and  had minimal side effects. The only side effect was that it made me tired. I still take it now. My body has become used to it so that it has no noticeable side effect at all anymore. On it, I don’t hear voices and I don’t think I’m under surveillance.  I found this drug while being treated involuntarily – so for those who advocate for more forced treatment, here is a story for you. For me, the issue of forced treatment is not a simple, clear cut one. As I’ve noted, I’ve also had a horrible experience with being treated involuntarily. I’ll add that I came close to having a second horrible experience – but that is not what I wish to dwell on here.

There are down sides to the drug I take. I am at risk of developing diabetes and liver problems. I sometimes worry about developing metabolic syndrome and the shortened lifespan that can lead to.

I’ve tried going off my meds. I’ve learned from experience that doesn’t go well for me. The voices always come back.

What all this has left me with is a strong interest in how people manage to cope and live with voices. It’s not because I’m against medication. I take medication and it’s played a key role in my recovery process. But one reason it took me so long to learn that the meds worked was because some meds didn’t work for me at all and some meds took a long time to work. It is possible to be on meds and still be hearing voices.  There are also some unfortunate folks for whom current meds just don’t seem to work. They’re treatment resistant. So exploring ways to manage or even live well with voices is very worthwhile.

I did have strategies that helped me to cope with my voices, although I didn’t think of them as “coping strategies”: they were just things I did. I’m going to share them now, not because I think these strategies are the best way to cope with hearing voices or that they’ll work for every person, but rather because they might be helpful to some folks who hear voices that are distressing.

If I come across others who are willing to share their strategies on this blog I will post them as future entries.

Strategies I Used:

A. Distraction:

Sometimes talking to people about things that were completely unrelated to my voices was helpful. It helped me to not focus on what the voices were saying.

Sometimes reading helped as a form of distraction. I had a hard time with reading, because the voices would be talking while I was trying to read. It was a bit like trying to read a book in front of the TV with the TV on and the show being about you: makes it hard to focus on the book. But I tried to read a lot and sometimes I would succeed in losing myself in a book. Then I’d still be hearing the voices but they became a kind of “white” background noise that I wasn’t following.

I used a rhyming technique that was also a form of distraction. I’d start with a verse. The first verse was always:

Voices, voices in the air

Voices ,voices everywhere

If I ever found out who

I’d shove your face in doggy doo.

I’d then change the words to the verse while keeping the same simple rhyming scheme. I’d see how many new verses I could come up with in a row without pausing between them. This meant that as I was saying the current verse (in my head) I was also trying to come up with the next verse. When I ran out of new verses I’d just start over again. It required enough concentration that although I’d still be hearing the voices, I really wasn’t following what they were saying.

B. Music & Sound

Sometimes I’d crank my Walkman up full blast (in the days before iPods). Listening to the loud music would block out the voices. I know it’s not good for your hearing and for that reason wouldn’t recommend it, but it was something that helped me. I’ve met others though, who say they’d just hear voices in the music so it wouldn’t work for them. We are all different.

Music was also helpful in that it influenced my mood. Certain kinds of music would help me relax or lift my mood and this helped me to cope. Music was also sometimes a form of distraction.

Other sounds were helpful too. I’d turn on the TV and various radios in my apartment all at the same time so that there were non-distressing voices competing with the distressing ones in my environment.

Other times I’d whistle. Again this was to create a sound to compete with the voices I was hearing.

C. Talking

This is one of the things that helped me the most.  I have a very supportive husband (and family in general). My husband was willing to listen to me when I needed to share what I was experiencing – even when I was going on at great length about what the voices were saying or the delusional ideas I had. Because he was willing to listen and I had someone to share with, I never felt like I was alone in my struggles. I always felt like I had an ally. Having someone willing to listen, who didn’t need to change the topic, was tremendously powerful. I never felt alone.

D. Visualization

Sometimes, when the voices were upsetting me, I’d visualize myself in a cave. The walls of the cave were protective, but the voices were coming in through the opening. I visualized them as black tentacles lashing at me but they were limited to accessing me through the opening of the cave.  They also had to make it through the shield I imagined having at the entrance of the cave, which was my anger with them. Another defense I visualised was a music box which represented the music, whistling and other sounds I used to cope. The music box was inside the cave with me. And there was also a fire which kept burning. The fire represented my “goodness” – things like my love for my husband and family. It kept burning no matter how much the tentacles attacked. The piece of art that appears with this article is a representation of the visualization I did.

E. Changing my Thinking

I once made a very simple change to the way I thought about my voices that made them much easier to bear. When I first started hearing voices, I imagined them as coming from people who were better than me: smarter than me, better looking than me, more successful than me etc. Then one day I got to thinking: these voices are pretty darn mean. They’re wrecking my life and they aren’t just wrecking my life, they’re wrecking things for all the people who care about me. The voices aren’t coming from people who are superior, they’re coming from low-life scum. I’d never do what they were doing to me to someone else. I was superior to them. This made all their derogatory remarks sink in less.

I hadn’t gained insight yet. I still thought it was all real. But I had still found a way to change the way I thought about my symptoms in a way that made them easier to bear. I tend to think being offered cognitive behavioural therapy for psychosis would have been helpful.

Was this enough?

No. It was like putting a tiny bandage on a great big wound. My voices were too negative, too constant, and too persistent for all this to be enough. But it did help and so I am sharing.

Postscript:  I thought I should add a bit more about my recovery to this article. To me, recovery is about “living beyond your illness:” living a life that is satisfying, fulfilling and meaningful. I think I am far along the journey of recovery. I have a good marriage to a wonderful man, I have a good job, I have friends, I have freedom to pursue my interests and I live in a nice place. I think I am “living beyond my illness” and far along the path of recovery. I am happy. Isn’t being happy with one’s life what recovery is all about? To see an article more focussed on my experience of recovery click this link to  The Schizophrenia Society of Canada Newsletter with recovery article on page 5-6. It is interesting that one response to the linked article was for someone to say I was never really sick because I do so well now.

Suicide Intervention Resources

World Suicide Prevention Day (WSPD) took place this week on Sept. 10th. Because of the many tragic deaths that result from suicide, we wanted to share the article below on resources to assist with suicide preventon, intervention and postvention. It comes from SAFER (Suicide Attempt Follow Up and Research). Suicide is the leading cause of injury related fatality in Canada. In 2009 alone, there were about 100,000 years of potential life lost to Canadians under the age of 75 as a result of suicides, and it is estimated that well over 3,000,000 Canadians have been impacted by suicide in some way.

Resources to Assist you with Suicide Prevention, Intervention and Postvention

September 10th is World Suicide Prevention Day (WSPD). Communities across Canada will join to raise awareness for suicide prevention, support those bereaved by suicide, remember those lost to suicide, and renew our commitment to helping all Canadians who struggle reconnect with hope and positive possibility.

Suicide is the leading cause of injury related fatality in Canada. In 2009 alone, there were about 100,000 years of potential life lost to Canadians under the age of 75 as a result of suicides, and it is estimated that well over 3,000,000 Canadians have been impacted by suicide in some way. Among those aged 15 to 34, suicide was the second leading cause of death.  In BC 530 people died by suicide  2010, 110 females and 420 males, with more than half of all these deaths occurring in those 49 years of age and under.

These are for the most part preventable deaths.  And suicide prevention is a responsibility we all share. Reducing risk requires all of us to work together and support each other.  Indeed there has been a positive and significant shift in national attention devoted to this important public health issue. In addition to a growing number of courageous testimonials on the impact of suicide on individuals, families and communities, this past year saw Parliament for the first time become actively engaged in a serious discussion of suicide prevention.  A private member’s bill to establish a national framework on suicide prevention was introduced by the Hon. Harold Albrecht (Bill C300) and received overwhelming bi-partisan support. It is now being reviewed in the Senate and is expected to receive Royal Assent in the early fall.  Work is also moving forward in establishing a National Collaborative on Suicide Prevention and a National Distress Line Network.

To mark WSPD this year SAFER (Suicide Attempt Follow-up Education and Research) Counselling Services would like to link you to some valuable resources, many of them new.  We support the theme chosen by The Canadian Association for Suicide Prevention (CASP) for this year’s WSPD campaign – “All Together”.  It is an invitation and challenge for every segment of society to become involved and work together to support suicide prevention at home, in the community, in the workplace and in every service organization.  The materials below have been created by various organizations committed to assisting in this process.  We hope you find them useful.

From CASP, in partnership with Klinic Community Health in Winnipeg (just click on title)

Also see:

For information on some of the local WSPD events – http://www.suicideprevention.ca/events/worlds-suicide-prevention-day/local-events/british-columbia/

Peer Support Training Class of 2011-12 Word Cloud

On Sept 7, Vancouver Mental Health Services Peer Support Training held it’s Class of 2011-12 Grad. Here is the word cloud that students and guests generated using words that represented peer support to them:

Violence and Mental Illness

There is a lot of fear mongering that sometimes happens when mental illness and violence are discussed – sometimes as part of a political agenda. Unfortunately this feeds fear and increases stigma against those of us who sometimes experience psychosis. The reality is that most people with mental illness never committ violent crimes and that there are a number of other risk factors for violence that are much more significant than psychosis. I, for one, have experienced untreated psychosis for significant periods of time and never been violent. I am not alone in that. Please find below an article on the topic of mental illness and violence by guest blogger, Simon Davis who teaches social work at a university and works in the mental health system as a manager. – Renea Mohammed

Violence and mental illness

By Simon Davis

The relationship between mental illness and violence continues to be an area of controversy. The perception that persons with mental illness are violent has strongly contributed to the stigma these individuals experience: surveys of the public have found a desire for greater social distance from persons with mental illness based on this belief. Perceptions about violence, aided by media portrayals, have also been shown to significantly influence the legal response, through the implementation of community treatment orders (an involuntary outpatient status) in a number of jurisdictions including Canada (Nielssen et al. 2011; Taylor 2008). An example of these is “Brian’s Law,” an Ontario statute named for a sportscaster killed in 1995 by an apparently mentally disordered man in a highly publicized case.

There is now enough accumulated evidence to say that mental illness is a risk factor, albeit small, for violent behaviour (Choe, Teplin and Abram 2008; Corrigan and Watson 2005; Rueve and Welton 2008; Stuart 2010). This finding obviously needs to be put into context. First, there are other risk factors that are much stronger predictors, in particular youth, maleness, and active substance misuse (Corrigan and Watson 2005; Rueve and Welton 2008; Steadman et al. 1998; Wallace, Mullen, and Burgess 2004). Second, concerning the public’s fear of “stranger violence,” violence by persons with mental disorders is most often directed at intimates, particularly family members, rather than at strangers – the same pattern seen in the general public (Arboleda-Florez 1998; Estroff et al. 1994; Lefley 1997; Wehring and Carpenter 2011). Third, persons with mental disorders are much more likely to be the victims of violent acts than the perpetrators (Choe, Teplin and Abram 2008; Wehring and Carptenter 2011). Fourth, environmental factors are significant. One study concludes that “persons with persistent psychiatric disorders may be at increased risk for committing violence because of socioeconomic factors and because of how, where and with whom they live, rather than because of their psychiatric disorders” (Estroff et al. 1994, 670). Persons with serious, persistent mental disorders are overrepresented among homeless populations and in skid-row settings, where day-to-day survival is a difficult challenge and a premium is placed on toughness.

In my own experience, which includes over 25 years of working directly with the seriously mentally ill, I have only encountered two instances of a client-on-staff (minor) assault, in both cases a situation where the assailant was experiencing psychosis, fearful, and misperceiving the presence of the staff person.

There are at least two positive corollaries here: first, that most persons with mental illness are not violent, and second, that with greater access to treatment many of these unfortunate (albeit rare) events could be prevented. Family members in particular have argued for some time that with greater access to treatment, for example the ability to get their ill relative into hospital, they would not have to wait until the situation is “too late” — an escalation requiring the intervention of police quite commonly.

Some people have argued for more widespread use of involuntary interventions and laws that support “assisted outpatient treatment,” such as “Brian’s Law,” mentioned earlier. (Inman 2011; Torrey 2011). However, these interventions have been found to be oppressive by many clients and advocates, and to potentially add to stigma and worsen the therapeutic relationship (Dreezer & Dreezer Inc. 2005; Stainsby 2000).

It may be that better early intervention approaches will help, such as EPI (Early Psychosis Intervention), but our current ability to accurately identify and predict outcomes among younger persons first experiencing a psychotic illness is poor (Brown and McGrath 2011; Kirkbride and Jones 2011).

In sum, we know that most mentally ill persons are not violent, but that the smaller number that are get disproportionate media attention (Pinfold and Thornicroft 2006). And, in working with higher-risk individuals, we need to carefully balance public safety concerns with respect for dignity and autonomy, and the potential for actually increasing stigmatization: “As health care providers and researchers we must be wary of policy directions that could result in greater restrictions on people who use mental health services, as opposed to providing them with better supports to live full and rewarding lives” (Morrow, Dagg and Pederson 2008, 1). 

References

Arboleda-Florez, J. 1998. Mental illness and violence: an epidemiological appraisal of the evidence. Canadian Journal of Psychiatry, 43:  989-996.

Brown, A. and McGrath, J. 2011. The prevention of schizophrenia. Schizophrenia Bulletin 37: 257-261.

Choe, J., Teplin, L. and Abram, K. 2008. Perpetration of violence, violent victimization, and severe mental illness: balancing public health concerns.  Psychiatric Services 59: 153-164.

Corrigan, P. and Watson, A. 2005. Findings from the National Comorbidity Survey on the frequency of violent behaviour in individuals with psychiatric disorders. Psychiatry Research 136: 153-162.

Dreezer & Dreezer Inc. 2005. Report on the legislated review of community treatment orders, required under s. 33.9 of the Mental Health Act. Downloaded Aug. 2d, 2010 from the World Wide Web: http://www.health.gov.on.ca/english/public/pub/ministry_reports/dreezer/dreezer.pdf

Estroff, S., Zimmer, C., Lachiotte W. & Benoit, J. 1994. The influence of social networks and social support on violence y persons with serious mental illness. Hospital and Community Psychiatry 45: 669-679.

Inman, S. 2011. The right to be sane. Downloaded Oct. 21, 2011 from the World Wide Web: http://fullcomment.nationalpost.com/2011/07/29/susan-inman-the-right-to-be-sane/

Kirkbride, J. and Jones, P. 2011. The prevention of schizophrenia — what can we learn from eco-epidemiology? Schizophrenia Bulletin 37: 262-271.

Lefley, H. 1997. Mandatory treatment from the family’s perspective. New Directions in Mental Health Services, no. 75: 7-15.

Morrow, M., Dagg, P. and Pederson, A. 2008. Is deinstitutionalization a ‘failed experiment?’ The ethics of re-institutionalization. Journal of Ethics in Mental Health 3: 1-7.

Nielssen, O. et al. 2011. Homicide of strangers by people with a psychotic illness. Schizophrenia Bulletin 37: 572-579.

Norko, M. and Baranoski, M.  2005. The state of contemporary risk assessment research. Canadian Journal of Psychiatry 50: 18–26.

Pinfold, V. and Thornicroft, G. 2006. Influencing the public perception of mental illness. In Choosing methods in Mental Health Research, ed. M. Slade and S. Priebe, 147-156. London: Routledge.

Rueve, M. and Welton, R. 2008. Violence and mental illness. Psychiatry 5: 34-48.

Stainsby, J. 2000. Extended leave. Canadian Journal of Community Mental Health 19: 152-155.

Steadman, H. et al. 1998. Violence by people discharged from acute psychiatric inpatient facilities and by others in the same neighborhoods. Archives of General Psychiatry 55: 393-401.

Stuart, H. 2010. Mental disorders and social stigma: three moments in Canadian history. In Mental Disorder in Canada: An Epidemiological Perspective, ed. J. Cairney and D., 304-330. Toronto: University of Toronto Press.

Taylor, P. 2008. Psychosis and violence: stories, fears and reality. Canadian Journal of Psychiatry 53: 647-659.

Torrey, E. 2011c. Stigma and violence: isn’t it time to connect the dots? Schizophrenia Bulletin 37: 892-896.

Wallace, C., Mullen, P. & Burgess, P. 2004. Criminal offending in schizophrenia over a 25-year period marked by deinstitutionalization and increasing prevalence of comorbid substance use disorders. American Journal of Psychiatry 161: 716-727.

Wehring. H. and Carpenter, W. 2011. Violence and schizophrenia. Schizophrenia Bulletin 37: 877-878.