We all have days we will never forget. On top of my list is the day when my nineteen-year-old son revealed a new perception of reality. He had always been a top student a little odd and forgetful at times, but also extremely bright and endued with a sharp sense of humor.
Over the course of a few months, however, we had noticed some changes. He had become quieter, slow to react, and at times frustrated to the point of tears. He came back after his first semester at college with terrible news. His grades had fallen so low that he had been dismissed. A few weeks later, his girlfriend left him. We also detected something deeper that we couldn’t understand. We could only encourage him to try again, to start a new semester at a different school.
On that unforgettable day, my husband woke him up early to remind him to send off new college applications. I was checking my e-mails when he approached me. He looked confused. After a long pause, he asked, “Mom, is this a game?” His eyes were perplexed and searching.
“Do you want to play a game?” I asked, hoping it could be that simple.
“No. Is this a game?”
“Do you mean life?”
I mustered up all the poise I could get and gave some theological explanation of how life can seem like a game but that God is in perfect control. All the while, an ominous feeling gripped my heart.
He asked other questions. “I don’t understand this extension.”
“What do you mean?”
“This extension of life.”
I scrambled to find another theological explanation, but by that time my heart was racing. Very calmly I went to another corner of the house where I frantically phoned my husband. Hearing the panic in my voice, he came back from work. We talked to our son together but still could not grasp the full meaning of his words. Over the next few days, he continued to surprise us with similar statements. One day he asked me, “Mom, what do you do when you hear voices?” It was hard for me to tell him I don’t hear them.
After talking to some friends who have experience in this field, we took our son to the mental ward of the local clinic. The screening therapist recognized the problem immediately. At a second visit, she disclosed the diagnosis and prognosis to him: “You have schizophrenia.” I was not prepared for this. With eight children, I had to face many difficult situations, even the prospect of death. But schizophrenia? As most people, I didn’t know anything about the disease.
Contrary to popular opinion, schizophrenia is not a split-personality disorder. Also, people with schizophrenia are not particularly dangerous or violent. If anything, they are more apt to hurt themselves than others. The latest consensus is that schizophrenia is caused by a chemical imbalance in the brain, probably an excess of dopamine. These conclusions were reached when doctors realized that dopamine-blockers were able to decrease the hallucinations that plague most schizophrenics. It’s not a foolproof method, and there is no absolute explanation.
In any case, recovery is not as easy as popping a few pills. First of all, most people with schizophrenia deny their condition, so naturally they don’t want to take medications. Also, the medications only reduce the hallucinations, and many other symptoms of schizophrenia persist (social withdrawal, stifled emotions, and lack of motivation, to name a few). As one writer puts it, schizophrenia is the cancer of mental illness.
I don’t have enough space here to describe the total upheaval of our lives over the past two years the calls to 911, the hospitalization, the rollercoaster of hope and despair, car accidents, arrests, and sleepless nights. But I would like to share what I found helpful.
This sounds obvious. As Christians, we know we should trust God in prosperity and adversity. On the other hand, schizophrenia is so mysterious and unpredictable that it can catch us by surprise. My son could look totally fine one day and be unrelatable and anguished the next. I learned to keep my eyes on the Lord to avoid being swallowed by the waves. The book of Jonah was comforting in this sense, and instructing when my son’s healing was not proceeding according to my plans.
I often repeated to myself Proverbs 21:1: “The king’s heart is a stream of water in the hand of the Lord; he turns it wherever he will.” Ultimately, I couldn’t do anything to heal my son. Even the medications had strong limitations. But his heart, so often alien and inscrutable, was in the hand of the Lord. Psalm 29 was also encouraging. If God’s voice “breaks the cedars of Lebanon” and “shakes the wilderness” (Psalm 29:5, 8), how could the puny voices my son was hearing prevail on his mind in any ultimate sense?
When it comes to mental illness, progress is often slow. I learned to silence my expectations and wait for God to work in my son’s heart according to his schedule and plans. Once in a while, a sudden ray of light interrupted my day. My son talked to me about the voices he still heard. “They are always angry,” he said. “I used to be paranoid, but they are losing their power because they know I don’t believe in them anymore.”
After his hospitalization, I became his shadow, watching him in the house or yard, or peeking through the door of his room. Sometimes I sat with him for a while, both of us staring into the distance. I joked with him that if we were in the 1960s we could put some colorful bands around our heads and look “far out.” There was so much I still didn’t understand, and so much I had to leave in God’s hands.
There is always a temptation to tread the unfamiliar territory of mental illness by relying on the comfort of set ideas. Besides, parents are often tempted by pietistic desires to look for tangible signs as a comfortable support for our weak faith. On the other hand, mental illness doesn’t allow us to make comparisons. This is well expressed in a letter by John Newton, a close friend of William Cowper, who greatly struggled with mental illness (for more on Cowper, see page 52):
We say such a building is a house, not only when it is tiled, painted and furnished, but while the walls are yet unfinished, while it is encumbered with rubbish and surrounded with scaffolds. It would be well if both preachers and people would keep more closely to what the Scripture teaches of the nature, marks and growth of a work of grace instead of following each other in a track (like sheep) confining the Holy Spirit to a system; imposing at first the experience and sentiments of others as a rule to themselves, and afterward dogmatically laying down the path in which they themselves have been led, as absolutely necessary to be trodden by others.
As soon as my son was diagnosed, I was handed a list of support groups for parents. They can certainly be useful in some situations, but the ones I attended were full of people with very few answers and who desperately wanted a way out. The main question was, “How can I as a parent survive this?” Many were telling me to put my son in an institution or send him out on his own, but I just couldn’t do it.
I am not saying their advice was categorically wrong. There are situations where a person with schizophrenia may not be able to stay home, especially when he or she refuses medications and when there are young children involved; but research has confirmed that schizophrenics under medical care recover much better in a supportive family environment.
Eventually, when my son nailed shut the door of his room and locked himself in there for days, he had to be taken to a hospital. A month later, when he was discharged, we were given the choice to take him back or send him to a halfway house. We welcomed him home, as our uneasiness and fears mingled with insuppressible love.
A friend and pastor with a schizophrenic son shared my feeling: “For two years, I had to put my life on hold for [my son],” he said. “But whenever I visited him in some institution and saw other young men who were abandoned by their families, I knew I could not allow this to happen to him.”
Loving a person with schizophrenia is not easy. My son didn’t usually want me to touch him and could be easily suspicious, to the point of interpreting a smile as a sneer. I learned to respect his legitimate wishes, to notice his nonverbal clues, and to be present without intruding. When I failed, I apologized to him and prayed my failures would not impact his healing. At the same time, I had to remind myself not to put any trust in my love but to see it as my simple duty.
Compassion came easier when I realized the challenges my son was facing. We all know how difficult it is to fight temptation when we are in stressful situations. People with schizophrenia have a much higher sensitivity to external stimuli, which they are often unable to compartmentalize and control. Add to that the perception of external voices, day and night. I reminded myself of these things when I was frustrated with his behavior.
With so little medical consensus on the causes and treatment of schizophrenia, it’s imperative that parents educate themselves. I read countless books, consulted experts, and watched my son carefully as I compared different opinions. I learned that it’s important to establish a course of treatment, as imperfect as it may be, before even considering alternative or supplemental therapies.
Reading stories of other parents advocating for their children inspired me to keep fighting to facilitate his dealings both with medical professionals and common people. Twice my son was arrested and placed in jail because he looked “high,” when in effect he was behaving as most people with schizophrenia would in a stressful situation.
The support and prayers of my church family were invaluable. For a while, my pastor stopped at our house every week for a few rounds of chess with my son. I know it meant a lot because my son prepared the chess board in anticipation. The pastor also announced to the congregation that if anyone was looking for a “ministry,” there were plenty of opportunities to visit the widows, the shut-ins, and the sick, including those who are mentally ill. It might not be a glamorous ministry, but it’s biblical and necessary.
In fact, when I started to talk about my struggles with other people at church, I was surprised to discover how many of them had similar experiences: so many had children, siblings, parents, or close relatives suffering from mental illness. Some of their stories were disquieting I realized most of us bear heavy burdens, often alone. It gave a new meaning to the word hospitality.
It was also encouraging to have the church consistory pray for and about his illness, offering their advice. The issue of medications for mental illness can be controversial in Christian circles, but in the case of schizophrenia, they seem to be necessary to get the mind stable enough to start making progress. After much research and prayer, our church consistory explained to my son that, in his case, taking medications was an act of concern for others.
Enormous encouragement came from knowing my son belongs to the Lord. He was baptized in the name of the Father, Son, and Holy Spirit and publicly professed his faith, and God faithfully proclaimed the gospel to him week after week for many years through word and sacrament. I can rest on the promise that “he who began a good work in [my son] will bring it to completion at the day of Jesus Christ” (Phil. 1:6). For those who don’t have this confidence, all is not lost. God can work through extraordinary mental limitations, just as he works daily through common human limitations.
As my pastor has pointed out, while “the secret things belong to the Lord our God…the things that are revealed” (Deut. 29:29) are sufficient to show us that “his steadfast love endures forever” (Ps. 118).
It also helped me to remember that Christ’s redemption is complete, including body and soul. God’s image, now so obviously marred in my son, will be fully restored, and it’s encouraging to know that day is getting closer. As Michael Horton writes in The Gospel Commission: “The lame were excluded from the temple courts as a sign of corruption, but already in Acts 3, a lame man is healed within the temple courts. It’s already happening on earth, as it is in heaven.”
I wrote most of this article only one month before my son died. The immediate causes of his death are not completely clear, but they were ultimately a result of his condition. While this is an experience I wish no one had to endure, I have learned a lot by caring for my son. He pushed me to see things differently and to draw deeply from God’s reservoir of patience, strength, and love. He slowed down my days and helped me stretch my mind to see beyond my little comfort zone, which is so ruled by time, space, and set images and thoughts.
Looking back, I realize that some of the fruits of the Spirit I was seeking in my son were there all the time. He often told me how stressful it was to have to constantly discern between what’s real and what’s not real or to put the voices in their place. Because of that, he had simplified other areas of his life. He had downsized his aspirations and expectations and had developed incredible patience and forgiveness. Hindsight is 20/20 in every way, and the past looks much clearer now. Still, my hope and trust lie beyond all this. They rest on God’s promises, our only sure foundation.
Simonetta Carr is an author and former elementary school teacher. She has written for newspapers and magazines around the world and has translated the works of several Christian authors into Italian. She lives in San Diego with her husband, Thomas, and family, and she is a member and Sunday school teacher at Christ United Reformed Church. Simonetta also writes at Cloud of Witnesses.
Adapted from Simonetta Carr, “Life and Death: In the Valley of the Shadow,” Modern Reformation, July/Aug 2014. Used by permission.