CB: You use an interesting device: the “patient self” tells her life story to her “therapist self.” Talk about this.
CD: I always wanted to tell someone my story and, for the longest, I knew it had to be a therapist. I had to keep it quiet, which I will explain later in this interview. That is rather ironic, seeing as how I published my story (Things change.) I wanted a therapist who would listen, encourage me and not set limits on me. Mainly, I am both a consumer and professional, and so it just came about rather naturally that I would write the book the way I did.
CB: You were a top, nationally ranked Alpine skier in your teens. So often the illnesses cut us off in the prime of our young lives. Do you feel young adults need more and better services? How effective were the treatments you were given? Your story shows these illnesses are equal opportunity disablers of our young.
CD: True. Schizophrenia usually takes hold in teens and twenties, bipolar coming on more in one’s thirties. These severe mental illnesses sent wrecking balls through the life of a consumer, as well as the family. I had to make adjustment after adjustment due to my illness, and I accepted that. However, it’s devastating. Dreams are shattered. People talk. I found very few people to be understanding. I remember thinking one time that I have to pay someone to like me (my psychiatrist).
My parents were often as lost as I was, but they helped me tremendously. I wrote my book for families, and the good news is that a lot of consumers do not have to go through what I did - I was correctly diagnosed in 1983. That was thirty years ago. More people are seeking help. Medications are better. I know that one reason for writing my book was simple: What I know now I wish I had known when I was seventeen years old. It’s been quite the education and a most painful one at that.
When my life was "cut off" countless times, I changed my goals and just tried to keep going. I ran into several professionals who were of no help whatsoever, and I had the wherewithal to know that. Two psychologists told me that I would never make it through graduate school due to my disorder. I, myself, always first became aware of my symptoms and then tried to beat them, conquer them. I wanted a therapist who thought like that.
As I was preparing for graduate school, I told my psychiatrist to stop referring me and sending my records, that I would find a therapist without his "help". I went to the yellow pages and saw a psychologist, not telling him my diagnosis, but asking him to help me with stress management. I saw him eight times. He helped me with stress and was encouraging.
It’s a war zone out there in a lot of ways. I have to tell this one story, as it kind of says it all. By my fourth year in graduate school, I was pretty good about dealing with myself. I learned something every day. My goal, at that time, was to set up a private practice and teach at Vanderbilt part-time. And so I decided to find a psychiatrist in Nashville and not make the trips to Knoxville to see the psychiatrist there.
This new psychiatrist told me that there was no way I had schizo-affective disorder, and certainly not severe. I asked him to call Knoxville. He did not. So he convinced me and took me off the anti-psychotic. Long story short, within a week, a cop stopped me from running in the middle of the night and took me to jail, no arrest. I ended up in jail for ten days before a judge finally had me admitted to a psych unit. I was there two weeks. They finally put me on my old medication and let me go. Just imagine full-blown schizophrenia and bipolar. I had one week until my dissertation defense. I became a doctor. People gaped quite often. I was just trying to pay the bills and survive.
From what I have learned, I would now walk out on some psychiatrist as such. I don’t know how to tell people how to find a good psychiatrist and therapist, but I do know that, as I said, things are better now. And I, myself, am somewhat of a source of confusion for many. If someone is committed or decides to seek help, I would say that things can get better and pick someone you would want on your team. Winning is trying. Be prepared for the possibility of a few and even many, many tries. Even time alone can help, so don’t give up. Get a second opinion, that’s what they’re there for. Google and read about a provider. Find professionals who truly know the meaning of help.
Understand this: I was living out of my car, delusional and a class act wreck who managed to find the room on campus where the graduate record exams were being administered. I scored in the 98%ile. Explain that. (I will say that I took a year prior to going to graduate school and worked as a server at a restaurant so that I could learn to put my words in the right order.)
CB: Do you believe stigma is the great culprit in the lack of services or the refusal of people to get treatment? You were brave to be honest as a professional credentialed in a field.
CD: I thought my life was over the first time I saw a psychiatrist. How wrong I was, but how wrong society is/was for creating such beliefs. Seeking help can be confidential. I was advised not to tell anyone about my disorder when I started graduate school. Honestly, I would not have made it through if people knew. However, by year four when I defended my dissertation, the faculty and students knew. They also knew me by then. I ignored obsessing about who knew what, etc. However, I fully cooperated in answering faculty members’ questions, giving them professionals’ phone numbers and stuck with a code called "need to know".
The stigma makes it tough to seek help, but so does no wanting to admit one has a problem. I think that denial can work both ways. Denial can prevent one from seeking help, working hard on oneself and having a better life. Myths get in the way as well. However, denial can work in another way, too. I was an excellent consumer, and I knew myself well as time went on. But get this: To this day, in my mind, I often just tell myself that I have a metabolic disorder!
CB: What does a day in your life in your recovery look like now?
CD: In 2005, I started developing Tardive Dyskinesia and had to change medications. The entire process was careless, sloppy and devastating. Truthfully, for this kind of reason, I have had to start my life over three times including initial onset. That means getting used to a new medication, working a minimum wage job and even changing locations (stigma).
Since 2005, I have progressed to a good life in spite of feeling like the most underachiever ever. I work at a ministry helping parolees exit prison, have a part-time private practice, care for my parents (and enjoy them), do NAMI presentations and guest lectures at University of Tennessee. I have been invited to consult at hospitals and also freelance write for a mental health magazine.
My medications are stable, although I successfully battle with some sleep trouble. I take excellent care of myself and have a good partnership with my psychiatrist.
I have a dog who roller blades with me; I go out with friends; I want to start on a second book. I like movies based on true stories and read. (My big wish is for a movie to be made showing me throughout my life, as it is really a blockbuster.)
God is first and foremost in my life. He’s gotten me this far, I hope he’ll get me wherever I’m supposed to get to! I do what I can and give Him the rest.
Although I hit deadlines and show up as expected, it’s still just each day for me.
CB: I’ll end by thanking you for talking with me. Could you close out with some words of hope for our community members diagnosed with these illnesses and their families?
CD: Is a glass half empty or half full? My disorder will always run my life. However, hope abounds, and thoughtful courage can build oneself up. Somewhere in Africa, there are tribes who treat their delusional members like kings and queens. This helps me make peace with my symptoms so that my gift to society at large is a humble forgiveness. And with acceptance comes gratitude.
I have the option of being a very angry, immobile woman who lives in fear and trepidation. However, this is not who I am. When I start feeling stuck, I stop what I am doing and pick up something else. That doesn’t really have to do with my disorder. That’s just me.
You can order my book, What a Life Can Be, on amazon.com.
Mental Health Activist