At the mental health and substance abuse conference, part deux

I am a veterans of these conferences held in Wisconsin Dells and organized for mental health and substance abuse professionals and consumers. The room I am occupying is more like a small conference suite with a bedroom and a meeting area with a full kitchen, There are two TVs:one in the living room and one in the bedroom. This is certainly an upgrade from the room at Chula Vista where I stayed for a Grassroots Empowerment Conference. At the Chula, the rooms were much smaller and there was a roommate.

I was here last year for a conference and did a lot of thing that made my stay a lot less comfortable. But i have learned. I am a veterans. And things are going well. i believe i have recruited the second member of my peer support specialist team at our agency. We will need at least one more person especially to help cope with the increased demand that will be generated by the Comprehensive Community Services.

I have witnessed the power of a strong team of certified peer specialists helping to spur the Our Space, Inc. residential programs that they staff. And I have also seen the peer support staff at La Causa which operates the Community Linkage and Support Program. Our agency will be the only one to fully integrate peer support within a case management program. And that will make us stand out from the others.

I want to see peer support and case management have a happy marriage. maybe even change the whole nature of the relationship between agencies and consumers. i want to see people getting the assistance to which they are entitled. And I want us to help people we are assisting become their own peer specialists. Who thinks this is a good idea?

Are you really a bipolar hot mess or are you just happy to see me?

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One of the things I educate people about in my role as a certified peer specialist is that we are all so much more than any diagnosis we may have been labeled with years ago. We talk about the importance of person first language to remember who we were before meeting the mental health system. We were brothers, friends, lovers, aunts and uncle long before.

prozac nation

These pictures in this blog entry represent images of what the mental health system morphed into, a means of dispensing powerful medications to people with different diagnoses. Was there truly a lot of scientific basis for any of this? Maybe, maybe not. Mental health is often imprecise, and sometimes it is pure guess work. People may believe that the medication has changed them in certain ways.

I have a friend who sometimes talks very fast when she says she is manic. I listen to her talking that way and I wonder what is this all about. Especially since i talk fairly slowly. I file the experience away and the next time we talk she may talk at half the previous speed, which makes for better conversation. It gives me the space to share my thoughts. Is all of this simply related to her diagnosis? it’s possible to be in a good mood without attributing this to mania.

I saw a WordPress blog entry about borderline personality disorder which it called one of the most over used and misunderstood diagnoses of all time. In movies and other media people with this diagnosis are very annoying. Their clinicians can’t wait to get away from them.

People with mental illness are often given several different diagnoses throughout our lives. This may result in our being prescribed a variety of medications. It could be like changing underwear. If you ask me about my diagnosis, I will explain I don’t have one. I work two different jobs, I have a close relationship and I enjoy may of the things as anyone else. My diagnosis is that I have a full and happy life. You may be a bipolar hot mess, but surely, I’m not.

The hearing voices simulation

Last weekend was my grad school weekend in a class intended to provide an overview of the mental health system. One activity was a disturbing simulation of hearing voices. We walked around and tried to perform tasks while wearing a set of headphones listening to a tape in which voices alternated between hateful, confusing and comforting voices. I had been in a hearing voices simulation before but it was not this intense and it was far shorter.

 

The teacher and a helper had us perform various tasks, ranging from simple games to memory, county backwards from 100 by 7 and taking a quiz. Most disturbing about this was that even when I tried to explain that the voices were making it too difficult for me to concentrate, the task masters ignored me.  They went along happily with whatever they were assigned to do.

I mean, counting backwards by 7, give me a break. Another difficult part of the exercise was the unpredictable nature of it. One minute, I was listening to some weird incoherent sound and the next minute I was hearing someone scream at me. I was not frightened but at different times frustrated. There was not enough time to think about my answers but then the answers did not matter.

What I understand was the problem of doing any higher level thinking. Math, forget it. I tried to work on blotting out the voices and if they were competing, trying to find the softer, more comforting voice. I can understand why people take medication to seek relief from these sounds but as I understand it, the medications don’t stop them. One man told me he was hearing the voice of god. As an atheist, I did not find that comforting at all. What are these voices that people hear and what do they represent?

 

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Getting a seat at the table

Getting a seat at the table

When I was at my first meeting of the Milwaukee County Recovery Committee, I took careful note at who was and was not at the table. The first thing that struck me was that I was the only African-American male. This was not a good sign because I am older than many of the people who will be considered  for the new Medicaid benefit  known as comprehensive community services. To quote Vice President Joe Biden, this is a big fucking deal.

The program fits somewhere between the community support program, which aids people with severe and persistent mental illness and targeted case management. If you look into the population being served by these programs, you will find a lot of African-American men and women. So, how many of them are at the table for planning what comes next?

There are some African-American case managers and they are making the case for the people they assist. People of all colors. The next step is to look at who are the consumers and where they are and to invite them into these discussions about the future. We now have a young African-American man attending the Recovery Advisory Committee meetings. He works as a certified peer specialist with two community organizations. But the next step is to participate in the revamping of community mental health in Milwaukee. African-Americans need to be educated and gain the credentials and become clinical workers. The county has a group of white women who will be helping to carry out this new benefit. But we need to be training new people in the community Asians, Hispanics, African-Americans and people of different blended origins, to become county workers. And in positions of power at Milwaukee County.

Come, it’s going to be a great meal and the biggest benefit will be better recovery for all that looks like us.

Is it really just our diagnoses?

Stop me if you’ve heard this before. “I understand you’re upset with me, but I’ve been in (fill in the diagnosis) mode and I’m not well. I think that in some of the information that groups us to promote their services, they tell people that we are more than our diagnosis. I did not find my diagnosis very helpful. It was many years ago and I have gained a lot more insight and support. So maybe when you see me, I’m acting a certain way because of something completely unrelated to my diagnosis.

Let’s list a few.

  1. I started a new relationship.
  2. My car broke down.
  3. My car repair cost a lot more than I expected.
  4. I got a check from work that I did not expect.
  5. My check from work was eaten up by an unexpected expense.
  6. I feel like someone misunderstood what I was trying to say.

All of these are things that happen to people every day and they don’t involve mental illness. In fact, all of them have happened to me this fall. Not all at once but what if they did? Let’s look at them.

Starting a new relationship: great. I can understand how you might began acting differently. You might have less time available for friends. Sometimes you might be a little tired from spending so much time with the person you are dating. Do you work in the same field or (horrors!) with the same company.

Car broke down? that’s a nuisance. Were you hurt? Who helped you? Was anyone hurt? What’s your next move? Throwing so many questions at once about a touchy subject like car repairs could set someone off. Wait to ask.

Car costing more than expected? Who hasn’t faced that dilemma? My car seems to have more costly repairs because of the placement of certain items. They’re positioned so that it takes longer to get at them. I also think some of these parts were the original ones that came with the car and are simply wearing out.

An unexpected check is great. This is a welcome change from my previous work in which I always seemed to receive less than I expected. I used to struggle in order to reach a certain number of hours only to find my hours being reduced.

The check was eaten up by the expense. That’s one of those good news/bad news deals. It’d good that I had the money because otherwise I would have been stuck. Creating a reserve will make it easier to ride out those expenses.

Finally, misunderstandings happen every day. All you can do is talk things out. And when the person explains what they thought you meant, then you need to accept that and move on. By holding onto resentment, we can impact our performance in ways that can be to our disadvantage.

So we need to beware of attributing too much of what happens to us to our diagnosis and look at what else might be happening.

A missing perspective

I have read about psychiatrists and psychologists who entered the field after being diagnoses with a grave mental illness. There are peer specialists who freely disclose that they became interested in mental health after surviving a diagnosis. However, what I have never heard is a Milwaukee area clinician other than Sue Gadasc talk about overcoming a mental illness. I ave worked with clinicians who who spoke privately  that they had struggled. And so I have wondered how their struggles had informed their work.

It makes sense that there are more people who might have been hospitalized while they were attempting to complete their education but kept running into obstacles. There is an organization in Madison, called SOAR, whose staff is comprised mainly of mental health consumers. I have read about SOAR but it would be be nice to hear of people working at Bell Therapy or WCS  with a mental illness. It feels like a missing perspective that would enrich our conversations. Another missing perspective is that of a psychiatrist who specializes in psychotherapy. Do those people still exist?

I would love to hear Will Hall of the Icarus Project and Madness Radio speak at a mainstream mental health group like the Crisis Conference. Or better yet, why not add Rufus May, a British clinical psychologist best known for using his experience of having been a psychiatric patient to promote alternative approaches to psychiatry? I think some of his ideas including Open Dialogue could do wonders for American mental health. Undoubted, the people I have mentioned are welcome at alternative approaches to psychiatry but those approaches need to be explored and included elsewhere.