The Riddle of Suffering

by David B. Biebel, DMin



In 1978 my wife and I lost a three year old son, Jonathan, to a genetic disorder called infantile bilateral striatal necrosis. Eight years later we nearly lost a second son, Christopher, to the same disease, which causes brain damage and may lead to death. For me as a Christian, these experiences have had both natural human components and spiritual results.

On a purely human level, to experience genetic disease in one’s children is to be immersed in a boiling cauldron of almost pure pain, with a generous helping of surprise, confusion, disappointment, anger, and guilt thrown in. In the beginning, this experience may act like glue, uniting a couple or a family against something beyond their control. In the end, it often becomes a wedge, driving people apart. That almost happened to my wife and me, but by God's grace we survived (and things continue to get better every year).

People grappling with genetic illness need help. For a Christian who happens to be a doctor, or a nurse, or an ethicist, or a pastor or chaplain who wants to help such people, I have a few suggestions.

First, we must keep our focus on the people involved, both the patient and his or her family. It is all too easy to think of the person before us as another case of cystic fibrosis, or infantile bilateral striatal necrosis, or whatever the disease may be. We so readily focus on the disease itself. However, the only way to help people affected by genetic disease is to remember that they are people who once had hopes and dreams much like our own - people who need understanding, support, encouragement, and compassion. Compassion entails holding their pain in our hearts. Even when there is nothing we can do in terms of 'treatment', our hearts can share their pain.

Christians who happen to be doctors, or nurses, or ethicists, or pastors, or chaplains, or whatever, would do well to ask themselves, as they try to help families grappling with genetic illness, ‘What would Jesus do?’

I believe that:

There is one other essential observation regarding the human side of the suffering that comes with genetic disease. I hate what this disease has done to our sons and our family through their suffering (and ours, with them). So if the genetic disorder could be dealt with for future generations through genetic therapy, I would rejoice. Had I known ahead of time the agony that genetic illness would bring us, I would have preferred to avoid it. So I understand why people who approach this issue on a purely human level using secular values and reasoning may choose to kill unborn, genetically deficient children in an effort to avoid the kind of pain I have just described. But there is more than a purely human dimension to life.

Spiritually speaking, when I ask myself would I rather that Jonathan and Christopher had never been born, the answer is: absolutely not. Though it broke my heart twice to share their sufferings, through them I know a lot more about love and faithfulness, kindness, gentleness, and humility than I could possibly otherwise have known. Through them 1 have learned what is important and what is not. People are important; things are not.

As Peter Kreeft writes in Making Sense Out of Suffering.- ‘Love somehow goes with suffering. Truth, wisdom, knowledge of reality, go with suffering. It seems that everything that has intrinsic value, everything that cannot be bought or negotiated or compromised or relativised or reduced, goes with suffering.’

Looking back, I can see that the experience with all its wondering and wandering has made me:

I have come to see both the experiences and what I have learned through them as a trust, a gift. In his grace he has called me to share this trust with others who have their own unique struggles and who desperately need to know the reason for the hope that is in us.

A few weeks after Christopher became ill, although he seemed to be improving slowly, we could not rouse him for his late-night medication. ‘Is it another attack?’ we wondered. ‘The beginning of the end? Will he ever wake again?’

I climbed into bed with him, resolving that if another son of mine had to die, he would not die alone. Before I fell asleep that night, with Chris cradled in my arm, I talked to him as he slept: ‘Daddy loves you. We all love you. Jesus loves you. You don’t have to be afraid. If you don’t wake up, you’ll go to be with him ... and we’ll see you again ... and then we’ll all be happy, we’ll be healthy, and we’ll understand.’

I still do not understand, nearly ten years later, why the Lord allowed my sons to be afflicted with infantile bilateral striatal necrosis. I cannot understand why Jonathan died or why Christopher survived. Today Christopher is almost totally recovered.

However, I do understand this: life is a riddle, which God wants me to experience, but not necessarily solve. When I was struggling to solve it, I found 1 Corinthians 13:12, which makes sense only in the original Greek. Paul basically says, ‘Now we see (or understand) through a mirror, in a fiddle, but then face to face.’

Modern Christians sometimes rush to put God’s truth into little boxes, neatly systematized, categorized, organized, and principalized, when God's perspective on suffering is too big for any of that. While for some people ‘spirituality’ is defined by what we know, God may be more concerned with how we handle what we cannot know.

A riddle loses its mystery and its power, even perhaps its significance, once it is solved. By keeping us in our riddle (everyone’s riddle is unique), God is helping us to learn about walking by faith, and not by sight.

That is what I intend to do, and what we can help others do, until we see Him face to face. That eternal meeting is when the meaning of everything, including our suffering with genetic illness, will suddenly and absolutely come clear… when (see Rev. 21:4) He wipes away every tear from our eyes; and there is no longer any genetic illness, suffering, or death; when there is no longer any mourning, or crying, or pain; for the first things will have passed away… and He will make everything new.

Source: Kilner, J.F., Rebecca, D.P., Young, F.E., eds., The Center for Bioethics and Human Dignity Presents Genetic Ethics: Do the Ends Justify the Genes? (A Horizon in Bioethics Series) Wm. B. Eerdmans Publishing, 1997.