Thursday, June 02, 2011

Giving Speeches: Trying to Create Change

I love giving speeches about my story now! I have been doing it for the past couple of years, every so often, when an event comes up. Tonight, I spoke to a NAMI Family to Family class, for family members of people who live with mental illnesses. This is a 12-week course that is offered throughout the U.S. with NAMI affiliates. It is free, and it is run by volunteers like most things NAMI does. I was the guest consumer speaker. I told my story to a group of about 12 people. Being a small group, it was really pretty comfortable. I also participated in their class before I gave the speech, so I had gotten to converse with them a little. So, it was a little less nerve-racking then some speeches I've done. Nevertheless, I was still nervous.

I like telling my story because it is not just my story. It is the story of so many other people, who don't get the chance to tell theirs. I like creating awareness, in my own small way, and if I can make a difference in even one person's life, then it is worthwhile to do so.

I talked about some of my sordid past with psychosis, and I realized later if I had more time I would have talked more about the recent years since I got diagnosed, which I didn't get a chance to delve into since I spent so much time on the more intense stuff. I think the people are generally interested in this intense stuff, because when it is contrasted with how I'm doing now, they seem quite surprised, and my hope is that it gives them some hope. Several of them spoke about their children who have mental illnesses like mine, and a couple asked me for advice on what to do. I had a hard time with that one. Later, I thought, I could have said, "Coming to this class and educating yourself is doing something to help in itself". But, alas, I didn't think of that at the time. When it comes to what you can do to actually help a psychotic person, I admittedly have a hard time knowing the answer to that. I know that, when I was at my worst and people in my family knew there was something wrong with my brain, they still didn't know what to do about it or what it really was. I know that, to some extent, people did the best they could in dealing with me, which, at times, meant they couldn't deal with me at all. I think my mom had the hardest time, because she's my mother, and she tried to be helpful, but also didn't understand my behavior or know what to do about it. Much like these mothers tonight. I told them, if you let a person know that you care, that makes all the difference. But I also said, when a woman asked me what to do when her son is hallucinating, that telling him it's not real isn't going to change things much. I said that, in my opinion, medication is what helps psychosis. And this is really what I do believe, as it has been my experience. I mentioned therapy that helped me a great deal the past few years, and my case manager, who also helped, and how I'm losing those things now due to budget and Medicare issues.

In the end, I can't say I gave these people a lot of answers about what to do for their loved ones. I can say I tried to help them understand their family member's point of view, and what those experiences feel like for a person living with a mental illness. I can say, I tried to be very honest, and to explain that there is hope, and you can get better. After the class, this one woman who was upset about her son came up to me, and I gave her a little hug and told her there is hope. I hope she has hope. Because there is reason to have hope. I do believe that.

One man asked me what my relationships with my family are like now. I had mentioned that there were times when I wasn't in contact with hardly anyone for long periods of time, and that my mom had a hard time dealing with me sometimes. I told him I'm really close to my mom and my one brother and sister who I see a lot now, and that my younger brother and sister still don't know much about my experiences because they were kids at the time. I said I'm not as close with my dad as I'd like to be, but I do see him on holidays and birthdays, although he would never attend a class like this one (I have told him about it and he didn't respond), possibly because he doesn't really understand mental illness and possibly also the things I said and did when I was psychotic that he still hasn't forgiven me for, even though I've apologized. Maybe I haven't apologized enough, I don't know. I'm glad that there are men like this man tonight who will take an interest in learning about mental illness and how it pertains to their family member, because I think society especially puts the idea in our heads that these kinds of things are "women's issues", and not the type of thing a man should be interested in. In reality, mental illness affects millions of men, and millions of men's family members, and hiding  your head in the sand doesn't help.

After the class, I felt a little weird, like I always do after telling my story, because it is so  much like opening a wound and showing it to people, but I was also really happy I had done it. They all responded well, and thanked me for talking to them. They invited me to the party they're having on the last day of their class.

Next week, I speak, again, to the local C.I.T. (Crisis Intervention Team Training) course for police officers in my area. C.I.T. has trained  over 1,000 officers in the county I live in, and 10,000 in the state of Florida, on mental illness, with a forty-hour week of classes. I have been doing it once a year for about three years. I think this will be the third time I speak at one. I love the fact that these officers are learning about mental health, because it makes a real difference in people's lives when crisis calls are made. In fact, it saves lives. Research has shown that their are fewer shootings during crisis calls when officers have been trained in C.I.T. trainings, and officers who have received the training have prevented suicides.

I always get a little nervous about getting up in front of a group of forty police officers in their uniforms to tell my story. One part of my illness, is that I've always been afraid the police are after me. Not so much now, but in the past. Now, my fears of being pulled over or accused of shoplifting are mild in comparison to the fears I had when I was psychotic a lot. I was very, very afraid of authority figures in uniforms, as well as doctors, hospitals, the government, and numerous and sundry other people. So it takes a lot for me to get up in front of those officers and bare my soul. But I do it because, however cliche this may sound, I want to make a difference. I want to use my voice in my own small way, to combat stigma, and to help them understand. I want them to know, if only for a moment, what it's like to walk in the shoes of someone who has a serious mental illness.

One of the things that someone was surprised about tonight was how much I remember about all that I experienced while psychotic. The class facilitator chimed in to explain that the part of the brain that is experiencing psychosis is not related to memory, so it's not like people block it all out or forget it all. I do mention when I speak that if I don't remember ever being correctly diagnosed, perhaps it is just that I don't remember. But I'm pretty sure I never was until 2005.

All in all, it was a good night. I feel like I've accomplished something after I tell my story, and I don't say this to sound arrogant. I say it to encourage you to tell your stories too. I know a lot of people who read this blog have their own blogs about their mental illnesses. You are already doing something to tell your story. I think all of our blogs create a dent in the stigma that enshrouds these brain disorders and keeps them hidden in the dark corners of the society's collective consciousness. I think that when we can have a chance to speak in front of people, that really helps too.  If there is no C.I.T. training where you live, but you are interested in starting one, I would contact your local NAMI chapter. If there is no local NAMI chapter,  I would contact national NAMI, if you're interested in starting one. If there is one, NAMI offers free educational meetings, classes, and support groups. I think it is a valuable organization. There is also the Mental Health Association - now called Mental Health America - which doesn't have a chapter where I live, but does in many parts of the  U.S., and that's another valuable organization. There is also the Depression and Bipolar Support Alliance, which has support groups in many areas. When you can connect with others who care about mental health awareness, or who understand your experiences, or who respect your experiences and want to help you use them to create change - your life can really benefit from that. And if you are a family member, well I highly recommend NAMI, which was created by family members of people living with mental illnesses, and their education classes.

Thanks, as always, for listening.


  1. Beautiful work here!! It takes courage to tell your story and even more to get up and give a speech about it. Truly awesome stuff here! Congrats on the good job!

  2. Thank you for such an informative, insightful, well written post. I truly appreciate this information and your insight. I think it shows a lot about your character that you would choose to take your experiences, make yourself vulnerable, and share them in order to help others.

  3. Jen, I have a great deal of respect for you just generally, but especially for having the intelligence and courage to speak to others in public. It is such a valuable thing you are doing with your life. You still have your struggles, but you get up each day and do some good in the world. NAMI is an excellent organization. I am still hoping that a mental health support group of theirs reaches its way to my county in New York. Right now there is a support group by NAMI for family members one county over. It is so important to have support groups for the mentally ill and other programs easily accessible to people in every community. In time, I believe this will happen.

    Kate : )


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