My precious daughter, Helia, was diagnosed with “schizophrenia” fourteen years ago at age of twenty-three. Her illness was sudden and shocking to all who knew her. Helia had a good life by all worldly standards. She was stunningly beautiful, with a kind and sweet personality. She had recently graduated from one of the country’s top universities. She had a good job and had recently been promoted. She lived in NYC, the city she loved, was about to be engaged to the man she deeply loved, and was very involved in her local church. She was a devout Christian who had had a major conversion experience while she was in college, and whose life was centered on her faith in God.
Those created with an unusual sense of perception and intense sensitivity can feel the pain and the joy around them in an immeasurable way. Their antennas receive “frequencies” that the “normal” mind does not have the capacity to access. When triggered, their sensitive souls can be pushed to cross over to other realms not comprehensible to most of us. Some argue that they have a different biology; but undoubtedly they have a different spirit: one that can love immensely and can easily be shattered by pain due to overwhelming tenderness. Helia is such a person.
I, on the other hand, was a high-flying corporate executive in those days, a marginal Christian, and my life was focused on my career. Our family looked great from outside. In many ways we were the envy of everyone around us. We had everything that everyone else dreamed of: a beautiful family, wealth, health, successful careers, wonderful kids, powerful friends, etc. That is why Helia’s Illness was absolutely incomprehensible to us. But we were blind to our own flaws. Like all other families, it took us a crisis and some sobering self-assessment to realize the dysfunctionality that had ruled us so pervasively. We were all living for ourselves, and could see no wrong with our life style.
“How could something like that happen to us?” we asked. And foolishly enough, we thought that with all the resources we had at our disposal and all the important people we knew, we could overcome this problem easily. We imagined there was no treatment that we could not buy with our money, no famous doctor that we could not hire! I even knew people in management ranks of famous pharmaceutical companies. It was as easy as talking to them to get insights into the research they were doing before the rest of the world.
How foolish of me. How naïve I was in those days. God was about to shake me out of my stupor!
And so I embarked on the darkest journey of my life, one for which neither I nor my husband were prepared. I soon found out that there was no one who could help us. The psychiatrists, even the more sympathetic ones, were not making sense to me. I was coming from the business world and I was not used to accepting superficial answers. They could not tell me what was wrong with Helia and why this had happened to her. They could not answer my challenging questions about the scientific research in the field. The best doctors, the honest ones, would tell me: “We really don’t know what this is, but we are sure that something is wrong with her brain.” But why? “Why are you so sure that it is her brain?” I asked. Their response was, “because it can’t be anything else.”
And that is exactly where the problem lay. They could not get out of the box that they were forced into by their guild. Biological psychiatry, in my opinion, suffers from a flawed and reductionist conception of how the human mind works and what might be needed to help it to function optimally when it is not doing so. Thus, the main tool in psychiatrists’ hands is medication, which does the most destructive thing of all: it silences the suffering patient so she cannot fully voice what she is trying to tell the people around her. Sure, the medication is typically given with the good intention of minimizing the misery of the sufferer. However, that is how recovery is blocked and the sufferer becomes a chronic patient for life.
For recovery to be attainable, the voice of the illness must be heard. Human beings are not random byproducts of physical and chemical operations, and what we call madness is an important God-given human phenomenon with a voice that needs to be heard. The cure is hidden within the illness and starts with the madness itself. It is only after the illness has fulfilled its purpose that the person can return to sanity.
The question is: “How can we understand the natural progression of the illness if we never allow it to progress naturally?” Our conception of people with “schizophrenia” is filtered by how the medications shape their personalities, image, and behavior. Medicated, we lose these people, their true selves as created by God. In our pursuit of removing what is bothersome, difficult, and challenging, we lose the opportunity to unravel one of the greatest mysteries of being human. What do we gain in return? Possibly a sense of false security!
Helia was given many diagnoses, from psychotic depression to bipolar disorder, to obsessive compulsive disorder, to schizoaffective disorder, and finally schizophrenia. She was put on all kinds of medications, and was hospitalized forcibly several times. But nothing was helping her. She was spiraling into the abyss of darkness, deeper and deeper every day. This downward spiral continued until she became catatonic.
There is not enough space in this blog to recount the mistakes that both the mental healthcare professionals and our family made on this journey. After so many trials and errors, I was convinced that soon I would lose Helia if I continued on the same path. Life was confusing and nothing made sense. I had lost control completely and I was losing my precious daughter. She was engulfed in darkness and I could not find hope anywhere I turned. Even God was absent and I could not figure out why He had allowed such a consuming fire to destroy the life of one His own, a girl who worshipped Him sincerely.
I had to do something. I could not sit back and see our lives destroyed by forces of darkness. More importantly, by observing Helia’s behavior, I was convinced that this was not merely a brain disease, and that there was a lot more to this phenomenon than anybody around me understood. Theological and spiritual signs were written all over her language and her behavior. I believe that it is only by God’s grace that she is alive today.
That is when I, a marginal Christian, decided to go back to school and study Biblical Studies to see if I could figure this out from a totally fresh perspective. I wanted to get to know the God who had allowed this to happen and I wanted to understand the nature of His love and His wrath. Taking that step changed my life and that of those closest to me.
As I cared for Helia every day for years in the most awful and frightening conditions, as I cried to God on my knees, praying for a miracle, God sustained me, revealed Himself to me, and guided me through the journey that saved my family. I cannot describe in this short space all that went on in the intervening years. Caring for Helia taught me so much about this illness, way beyond what I could find in scientific papers, and the wooden categories of the Diagnostic Statistical Manual (DSM). Two years after stopping the medications, by God’s grace my prayers were finally answered and Helia finally came out of her catatonic state.
After I had finished my MA in Biblical Studies, for other’s sake I knew that I had to tell the world what I had learned. That is why I went through a PhD program to formalize all my research and document it for publication. My book, In the Fellowship of His Suffering: A Theological Interpretation of Mental Illness – A Focus on ”Schizophrenia”, is birthed out of my PhD thesis. It is based on my personal experience and on numerous theological, anthropological, social scientific, and psychiatric research findings. I hope that my book can make a dent in understanding this most mysterious and crushing human phenomenon of madness.
It is easy to speak up about human dignity but most of us fail when it comes to valuing the awkward, the disheveled, the confused, and the unclean—the mad.
My book is not primarily about my biographical journey, although it is heavily informed by it. The book is about a gift I found in Helia’s madness from my God, the God who loves the ugly, the marginalized, the poor and the persecuted, indeed the God who Himself became poor, abandoned, mocked, and crucified in Christ. Helia’s Journey opened my eyes to life in its deepest sense and changed not only my life, but the life of many around us.
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.