My sister Chris is on the left and our mother and keeper of black walnuts is on the right
My sister lives with chronic pain from various medical conditions which to becoming disabled. She just told me about a doctor who is being investigated for over prescribing pain medication at his clinic. When she was healthy my sister was a pharmaceutical representative. So she knew a little something about medication. Then she had to learn a lot more once she became a patient. She also has a college degree and paid attention to the number and type of pills that the doctor was prescribing.
Chris found that she could not tolerate the medication and described the doctor’s waiting room as a kind of casting call for potential addicted people. You will not see stories about people like my sister in the flood of media coverage about opiod abuse largely because of the color of her skin. Today’s newspaper has an article about white millennials as the face of the crisis. But long before it was a white problem, there were African-Americans in pain clinics who were being given way too many pills. Chris escaped because she recognized what was going on and changed doctors.
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?
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.
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.
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?
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.
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.
- I started a new relationship.
- My car broke down.
- My car repair cost a lot more than I expected.
- I got a check from work that I did not expect.
- My check from work was eaten up by an unexpected expense.
- 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.