The following is the story of Renee Kopache, who in a ten year period was hospitalized 40 times, was on nearly 40 different medications, survived three suicide attempts and 23 ECT’s, and many experiences of self injury Today Renee is medication free, has a satisfying personal life, and works as Recovery Coordinator of the Hamilton County Community Mental Health Board in Cincinnati, Ohio (www.mhrecovery.com). She is quick to point out that recovery is a process of taking responsibility for creating a meaningful life, getting better, reconnecting with society; that recovery is about stretching beyond one’s comfort zone so growth can happen, and that every person defines his or her own recovery. Here is her story: Personal Chronicle: Progression from “Mentally Ill” to “Recovering” to “Recovered”
In 1993, during my fourth year of doctoral studies, I found myself in the hospital, again. Only this time, it was different. This time, my doctor told me that I’d never be able to return to school, that I’d never be able to work again and that I’d have to take medications the rest of my life. And, even though I didn’t know what it meant, he also mentioned that he was going to start the paperwork to get me on disability.
I’d already been in the hospital about 15 times since entering treatment back in 1989. Yet, I’d never seen myself as mentally ill. After all, I was able to finish my Master degree and completed the coursework toward my doctorate in that time period. Sure, I had problems, didn’t handle stress well, and drank too much, but how does a “mentally ill” person excel in graduate school? That five-minute conversation with my psychiatrist destroyed all sense of hope in my life!
Sure enough, I didn’t return to school. And, since I was working as a graduate assistant, I didn’t return to work. Although I didn’t know it was rare at the time, I was approved for social security disability with my first application. After being a full-time student for 10 years and employed for 15, both were gone. Suddenly, my new identity was “disabled”. My friends, most who were graduate students, gradually disappeared and it wasn’t long before I completely isolated myself from the social world. I would leave my apartment to take care of essential needs, like treatment and grocery shopping, but otherwise my communication with the world occurred via chat rooms on the Internet.
The hospitalizations didn’t stop, the medications still didn’t work, I was still depressed and suicidal, and my drinking got worse. The only difference is that I went from being an impoverished student with a dream to a really impoverished person with no future and no hope. I went from feeling suicidal to attempting suicide.
Looking back, I have to say that I was fortunate. Unlike the vast majority of people that I met at the clinic and in the hospital, I at least had a credit card. So, when my $444.00 a month disability income didn’t cover my rent ($350) and car payment ($206), I at least had a mechanism to make up the difference and maintain my apartment and means of transportation.
Unfortunately, I “maxed” out my credit card in about two years. It was at that point that I decided that I was going to go back to work or die trying. I didn’t care about the fact that I was still revolving through the doors of the hospital, or that the Indy 500 was racing through my brain, or that I constantly entertained thoughts of suicide, or that my body was imprinted with cuts and cigarette burns, or that I totally lacked confidence in my abilities or intellect. I knew that if I didn’t find work, I was going to die (apparently, there was still a small sense of hope in me). As a result, I also didn’t care that my doctor and therapist were hesitant to support my decision to find a job. Fortunately, I did have a case manager who fully supported my decision to find a job. In hindsight, it was probably most fortunate that I didn’t have anyone telling me that I couldn’t go back to work because I’d lose my benefits if I did.
I started searching the want ads and saw a job as a research assistant at the county mental health board. The ad said that you had to be a consumer of mental health services to apply. I didn’t know what the mental health board was and I didn’t know what a “consumer” was, but I knew that I was receiving mental health services, so I applied. The job only required a high school education, but I’ll never forget leaving that interview and saying to myself, “they’ll never hire me because I’m not qualified and I’m too sick.” I was sure that I blew it. The next day, they called and offered me the job. I accepted it and said to myself, “damn, I really faked them out!” It was 30 hours/week and not much money but it included benefits. It’s probably a good thing that I didn’t know that private insurance doesn’t cover case management and that it only covers 20 visits with a psychiatrist/therapist a year.
I didn’t realize it at the time, and you wouldn’t know it by looking at my history, but that job was the beginning of my recovery. I still struggled a great deal with my mental illness and I think I had a short hospitalization, but nine months later (December 1995) I applied for and was offered a full-time position as a program evaluator. My salary more than doubled, and apparently, I was still doing a real good job at faking them out.
From 1996 to 1999, while in the program evaluator position, I went through the worst period with my mental illness. If I had to guess, I’d say that I was absent from work about a quarter of the time. I was in the hospital about 12 times and most hospitalizations were followed up with a few weeks of partial hospitalization. I attempted suicide and found myself waking up in intensive care. And, most demoralizing, I underwent 23 ECTs from June through October of 1998. Aside from the fact that the ECTs didn’t work (at least they didn’t seem to), they were devastating because they totally destroyed my memory, which significantly impaired my ability to do my job.
The trend became obvious. I used up my 20 outpatient visits before June and had numerous hospitalizations the remainder of the year. Truth is, if it weren’t for the unbelievable support of my employer and co-workers during those three years, I wouldn’t have maintained employment or survived. On numerous occasions, staff donated vacation time that I used as sick time, which allowed me to continue to receive a paycheck.
The second major turning point in my recovery occurred early in 1999. I was committed to the state hospital in late February and spent the next two and a half months there. By this time, I had been on every cocktail combination of medications that one could imagine, and I had participated in numerous medication studies, most for schizophrenia even though I had been diagnosed with bipolar and borderline personality disorders. At least in conversation, my doctors’ focus had always been on the bipolar disorder. However, it had become clear to me, that my main challenge was the symptoms related to Borderline Personality Disorder. I was also aware that, for the most part, medications don’t help much with this disorder. More importantly, it was obvious that the medications were not working or helping me. Aside from the severe side effects that I was experiencing, the fact that I kept ending up in the hospital was a pretty good indication that medications weren’t a viable solution for me. So, I asked my psychiatrist to let me stop all of my medications and to help me focus on changing my thoughts and behaviors related to the Borderline Personality Disorder.
To my surprise, and to his credit, he agreed to give it a shot. Although I struggled a great deal, the last month of that hospitalization was without medications. At that time I was on an anti-psychotic, 2 antidepressants, a mood stabilizer, an anti-anxiety med and something for side effects. I could not drink a cup of coffee without a cover because of tremors. Without medication, I had a clearer thought process, my memory improved, I was able to access my analytical thinking process and my general health improved.
It was also during that month that my psychiatrist in the community informed hospital staff that he was not willing to continue with my treatment upon discharge. At the time, that angered me a great deal. But, it turned out to be another significant factor in my recovery. After I got out of the hospital, my primary task was to find a new psychiatrist. Within a week, however, it became quite obvious that I wasn’t going to find one who was within my insurance panel. To put it bluntly, I had burned too many bridges and no one was willing to treat me. Even psychiatrists that I’d never met were unwilling to see me. Apparently, my confidentiality had been violated and stigma within the mental health system was still very evident. Regardless, it was a blessing and the third major point in my recovery.
All of the sudden, my recovery was totally up to me. No longer could I blame doctors, therapists, or medications not working for my not getting better. Suddenly, I had no choice but to take responsibility for myself. I spent a ton of time browsing the web to learn as much about my illnesses as I could. It was then that, in essence, I took control of my life and became my own treatment provider. No longer was it okay to just understand what would help me. It was time to implement it.
Since most of my difficulties, especially racing thoughts and suicidal feelings, occurred after midnight, I made sure that I was in bed by 11:30. Instead of cutting or burning myself, I would hold a piece of ice in my hand until it melted. I’m not sure why, but it served the same purpose and left no scars. I forced myself to eat lunch with co-workers, to participate in work-related social events and to accept invitations to various events/activities in the community. While it was extremely uncomfortable, I began looking at people when they talked to me and said hi to strangers when I encountered them. I actually read the “Feeling Good Handbook” that I’d been given during partial hospitalization years earlier and started using the practice exercises. I had a blank copy of a mood log on my computer at home and at work and used it when I sensed that things were a bit out of control.
In addition to trying to change my thoughts and negative behaviors, I established goals around pursuing my hobbies. I’d enjoyed sports, camping, hiking, and photography since I was a kid. So, as a means to become active again, I set the goal of participating in at least one of these activities for an hour every week. Gradually I increased the types of things that I did as well as the amount of time each week that I spent doing them.
In the midst of these many changes in my life, another critical factor in my recovery occurred. In the fall of 1999, I assisted with the development of a proposal for a systems’ integration of recovery grant. The mental health board received the grant, and in the spring of 2000, I applied for and was offered the position of recovery coordinator. I new right then and there, that to be effective in my job, I had to exemplify recovery in my personal life. After all, who’s going to buy into the philosophy of recovery if the person responsible for promoting and integrating it is revolving through the doors of the hospital?
When I accepted that job, I’d never gone more than a year without being in the hospital, and rarely lasted more than six months. It’s now been five years and nine months since I’ve been in the hospital. Clearly, employment has been a major factor in my recovery. But, I don’t think I could have been successful with employment had it not been for the support that I received from my co-workers, friends and case manager. They believed in me when I didn’t believe in myself.
This brings me to another very important factor in my recovery, which is the major improvement in self-esteem that I experienced. I firmly believe that the recovery journey begins with a sense of hope and that optimal progress in recovery is reliant upon both self-esteem and self-responsibility. Since I don’t know many people with a low self-esteem who accept responsibility for their actions, I’m left with the deduction that self-esteem drives us to the latter stages of recovery (at least, it did for me).
In sum, while I haven’t discussed all of these, I attribute my recovery to seven key factors: quality treatment, education, employment/purposeful activity, self-responsibility, support, self-esteem/personal growth, and personality traits. The next few paragraphs elaborate on some of these factors.
Even though I experienced symptoms of mental illness long before college, I know that having a college education prior to being hospitalized and diagnosed with an illness significantly increased my chances for successful recovery. Likewise, I firmly believe that my decision to return to work, and especially my current position, has been vital to my recovery.
Since we live in a society in which many people blame other people, places or things for their lives, it’s not surprising to me that it is at the self-responsibility stage of recovery where many consumers get stuck or never proceed beyond. Self-responsibility was probably the most difficult aspect of recovery for me. Shifting from a life that was externally driven to one that is internally focused was totally foreign, not to mention very threatening.
While I certainly recognize the importance and value of peer (consumer) support, including the use of tools such as Advance Directives, WRAP and BRIDGES, it wasn’t an important factor in my recovery. However, the support of friends (some of whom were consumers), colleagues and co-workers was very valuable to me. Also, while not a huge factor in my recovery, support via Internet chat rooms literally kept me alive. Ironically, I think that same Internet support perpetuated isolation in my life. Eventually, I had to step out from behind the computer into the community to develop valuable relationships.
Since so many things in life are dependent on a positive sense of self, the vast improvement in my self-esteem and confidence is a key reason that I’m recovered. It took a very long time to erase the old tapes in my mind, but eventually, I realized that I don’t have my job because I’ve done such a good job of faking out my employer, I have it because of my skills and abilities. I don’t have my job because I’m a consumer, I have it because I’m talented and good at what I do.
When I started to take risks and stretched beyond my comfort zone, I started to have small successes. Despite some failures along the way, my confidence grew with each success; and, after a collection of small successes, I was willing to take bigger risks and stretch further beyond my comfort zone.
Finally, there is no doubt in my mind that the single most important factor that was present throughout my recovery is a personality trait that I possess. I’m extremely stubborn! While this trait may have led to me being labeled “difficult,” and “non-compliant” and to many lengthy stays in seclusion and restraints, it also drove me to prove wrong that doctor who said that I’d never return to school, that I’d never be able to work again, and that I’d have to take medications the rest of my life. While several factors significantly impacted my recovery journey, I’m recovered because I’m just that stubborn!
I feel the need to briefly mention some of the more subtle things that impacted my recovery. Early on, I made a conscious decision to not hide my mental illness. I knew that stigma was very real, but I also felt like hiding this part of my life was living a lie, and that inherent in non-disclosure is a sense of embarrassment or self-stigma. Both are counterproductive to recovery. I understood that it wasn’t something to tell everyone and that it is generally best to get to know someone a little bit before sharing such personal information. But, if I was going to lose a relationship because someone didn’t feel comfortable being around people with mental illness, I wanted it to happen before I spent a lot of time and energy developing the relationship. Especially since building relationships was a significant struggle for me.
I think the fact that I was never totally engulfed by the mental health system or consumerism allowed me to maintain a sense of “normalcy” even when I was very ill. Aside from the times that I was in the hospital, I spent two or three hours a week with my treatment providers. Even if I wasn’t very functional, I spent the other 165 hours in the week trying to do the same things that people who didn’t have mental illness did.
For several years, anger was the only emotion that I could recognize in myself. I wasn’t willing to experience emotions because I didn’t want to hurt anymore. What I didn’t realize was that by stuffing the “negative” emotions, I also prevented myself from experiencing the “positive” emotions. When I let go of the anger, I started to trust, and gradually, was able to heal. I mentioned the one psychiatrist who I think caused far more harm than good in my life. However, I want to point out that he was the exception. I had a number of treatment providers in both the hospital and community setting who spent endless hours by my side as I worked through the anger and pain in my life. These were the scariest moments in my life and a lot of people worked hard to provide both physical and emotional safety. They also put up with a lot of crap!
I’d like to close by saying that recovery has allowed me to become a better and healthier person than I was before being diagnosed with a mental illness. I hadn’t had a positive self-esteem since I was about 12 years old. Today, I am confident about who I am and how I feel about myself. No longer do I look at my shoes when I talk to people. I used to rely on everyone for everything. Today, I am a fairly independent woman. I now understand that my feelings, all of them, are okay. Even anger!
Prior to my recovery, I displayed signs of narcissism. Actually, I still do at times! But, I now realize that the world doesn’t revolve around me; and, when the world doesn’t revolve around me, I have the ability to be compassionate and giving towards others. I have a glimpse of what friendship and social interaction is about, and let me tell you, it’s far more rewarding than the “emotional safety” I sought via isolation. After having been evicted from an apartment and asked to leave a church due to mental illness, I have a hint of what it feels like to be discriminated against.
As a result, I think I am more accepting of those who are somehow different than me. The discharge summary from my last hospitalization stated that my prognosis is “poor,” and recommended that I not live alone in the community. About two years ago, I purchased my first home. Mental illness is devastating. But, through recovery from the illness, I have a career, social and community life in front of me that only I can limit.