Hope Requires a Reason to Believe
by Joseph Merlin Bowers
Had she lived, Natalie Ann Fuller would have turned 30 years old today. She suffered from bipolar disorder with psychotic features. A little over a year ago, Natalie put an end to the pain. She stepped in front of a fast moving train outside of Baltimore.
Soon after her diagnosis, they put Natalie on clozapine. It cleared up the psychosis, but Natalie’s bad luck held. She turned out to be part of the one percent who lose their white blood cells on clozapine. It would have killed her. Several other meds were tried. One was effective but caused obesity. I remember Natalie’s mother Doris emailing me that she thought her daughter deserved another option besides psychosis or obesity. Eventually Haldol was tried. Doris said that she did well when she stayed on it. Right or wrong, Natalie came to believe that nothing would stop the recurring episodes. Her history was having an episode, being fine for a while and then having another episode. She lost hope.
Episodic psychosis can be particularly devastating to hope. I can testify to that because I experienced it for more than twenty years. Out of necessity, I became adept at conning myself into believing each episode had been my last. It wasn’t going to happen again because of this reason or that reason. After six, eight or ten episodes, it becomes very hard to buy the con.
I think I lost hope after my last bad episode. I just couldn’t think of a reason for optimism. I carried on because my wife and two small sons depended upon me. But it was hard.
Ralph Trent worked as a consultant for a chemical supply company that sold a lot of chemicals to the lab in the power plant in which I had been working the past five years. He had been at the plant a lot in that time. We had played golf together. We had gone fishing together. He had visited me in the hospital when I signed myself in with an episode. Shortly after returning to work I walked into the lab office where Ralph was talking with my boss. I was heavily medicated and doing what we refer to as the “thorazine shuffle.” Seeing me shuffle in a shocked Ralph loudly exclaimed, “Why are you walking like that!” It was so hard to hold back the tears.
I wanted to cry a lot in the months that followed. I suffered from hopeless depression for a very long time. But I carried on. Miraculously, I haven’t had another bad episode since. There was a minor one when I quit smoking. Another when a psychiatrist decided to try me on a second generation antipsychotic. But its been mostly clear sailing for 29 years now.
There was a new medication. I had learned a lot about triggers, precursors and healthy lifestyles. I got a lot of support from my wife and my various social workers.
As the years passed without an episode the depression slowly dissipated. I started hesitantly to believe. Hope returned.
In every NAMI meeting whether of family members of the mentally ill or of consumers we recite a number of things. One is “I will never give up hope.” It’s all well and good to say this, but the reality is that for an honest, intelligent person to hope one must have a reason to believe.
In my life during the good periods between episodes I was often able to mostly pick up the pieces of my shattered dreams, hopes and plans and start over. During my current lengthy good run, I’ve been able to make some real progress. I have been blessed to be able to live a pretty productive, rewarding life despite having a serious mental illness.
I believe there are many of us out there who have managed serious mental illness pretty well. I believe it is very important that we speak out and tell our stories. I know there are consequences to coming out of the closet. One could lose a job. Not everyone is over 65 and retired like me. Relationships can be destroyed. Not everyone has a circle of friends who know all about the illness but remain loyal friends. But I see it as a matter of life and death.
When someone relatively new to battling mental illness learns of someone fortunate like me who has survived to know peace, happiness and even some joy, it may give them a reason to believe. It may allow them to hope. This may save lives.
When the Natalie Fullers of this world lose hope we all lose.