Joy and suffering in a special family

People with disabilities and poor health are a treasure.

The ”marriage” between biological science and medicine has brought us many advances to alleviate human suffering. Of course, trying to alleviate suffering is a high and noble ideal. But not all suffering can be eliminated, and so the question remains: how do we deal with suffering people? The story of a family that has had to face this question shows that this question is important, and for different reasons than we initially think. Because if we choose to ignore suffering people, we may be losing out on our greatest treasure.

Note: this story is real, but names have been changed to protect the privacy of those involved.

This story starts in the penultimate class of one of my “Big Questions in Science” course at Amsterdam University College. After giving my students an overview of the biological sciences, we spent one class talking about the “big questions” from an interdisciplinary perspective, in real Liberal Arts style. Because we had been talking a lot about cures for diseases, I chose joy and suffering as a suitable theme.

A lively discussion ensued, during which it became clear that in our experience, joy and suffering are closer together than one may initially expect. Also, paradoxically, they may occur together in the same person at the same time, but in a different way. One of my students provided a striking example of this phenomenon when she mentioned her little brother, who suffers a lot from a mental handicap but is at the same time the joy of the household. I was fascinated and some time later, she kindly agreed to tell me more about her little brother. This is her story about her brother John.

When John was born, it slowly became clear something was wrong. His development was very slow; he was not able to eat by himself or do things by himself. For John's parents, these were uncertain times, because they did not know what was wrong. The uncertainty lasted for some time. Later on, John was diagnosed with developmental dyspraxia, a neurological disorder which hampers development.

In his case it would translate into a light form of spasticity, as well as a serious form of developmental coordination disorder. Doctors predicted he would not be able to walk nor produce sounds in his lifetime. Knowing what was wrong brought the family some relief from uncertainty -- but also the realization that John had a serious problem.

How would they cope with this problem?

It rapidly became apparent that conventional medicine offered few solutions for John. But John's mother would not give up; she looked around for anything that might help. And over time, there were successes. John learned to walk. The whole family was committed to remaining positive and trying to make the best of the situation, and also having fun together.

His sister says that John has always had great capacity for empathy. If someone was sad, he would be very sad with them. If someone was happy, he would be very happy with them. John was especially happy about being with the people he loves. For instance, when his sister returned from being away for a while, he would throw his hands up in the air as if to exclaim, "She's back!", and radiate happiness. She could also make him very happy with some small things he likes, like eating pancakes, going to see Aunt Rebecca, or swimming.

At the same time, his sister admits with a sense of remorse, his brother and sister could also tease him very easily by saying he will have to do small things he doesn't like, such as getting a bandage on his eye or going to get a haircut. But that was all part of the close family atmosphere.

A sense of humor came in handy. Once, at an airport in Curacao, a rather religious country in the Caribbean, John's mother was driving him around in a wheelchair. John was tired of staying with his family all the time, and decided to get up and run away. His mother quick-wittedly threw her arms in the air and exclaimed: "It's a miracle!" and everyone around stared at her in amazement.

On their quest to help John in any way possible, they were once close to losing him. John's family had decided to sign him up for dolphin-swimming therapy, in which handicapped people are allowed to be in the water in touch with dolphins. It wasn't all easy, and once the therapy needed to be interrupted for several days because of severe storms, but when there, John enjoyed himself a lot, and seemed to be making some progress. But at one time he again ran away unexpectedly; this time he ran to the nearby swimming pool and jumped in. His mother was dumbfounded, because John could not swim on his own ... at least, that's what they thought. To their utter amazement, John swam to the other side of the pool without any problem. What was their life's biggest scare became their biggest victory.

All this is not to say that living with John, or stimulating his development have been easy. Far from it. The smallest things, such as learning how to blow air out of his mouth, have taken an enormous amount of effort. And this effort consists in persistence, patience, trying many times, failing many times, and at the end seeing him make a small step forward.

At one point in time, the family saw that their efforts did pay off, and his development had progressed beyond other children at the special school he was attending. They were afraid that by having him interact with children who were worse off, he would not be able to develop. So they tried sending him to a regular primary school. Unfortunately, it soon became clear that the burden of care was too high for this school, and John needed to find another place.

Also, with all his happy spells and unhappy spells, it is clear that John was quite often in a lot of pain. He was able to enjoy life and be happy, but he did always suffer a lot, and it is not strange that this weighed on the hearts of his family.

So it is not surprising that people have been asking my student: would you not rather have had a “normal” brother? Seeing someone suffering around you must have had a big impact on your childhood. Would another brother not have been better?

She is quite decided about answering this question: "I wouldn't have missed it for anything. John is my brother, and being with him has made me the person I am. Everyone is like he is, with their defects, and with a lot of good qualities. Learning to deal with John has given me a far wider view of what is going on in the world. We lived in a rather rich and pretentious neighborhood, I wouldn't want to go back there or be like the others there, I have the feeling that I would have been way more superficial and limited than through the experience that John has given me. I cannot prove this of course, but I think I would have missed out on a lot of lessons if he wouldn't have been there."

John has had a similar far-reaching impact on her family. Her mother is a biologist with a PhD, but had to give up her lab work to focus fully on raising John. She has become quite “spiritual” through the experience. Her quest for alternative ways of helping John brought her into contact with philosophies of life that were very different to her earlier materialist outlook, and she has started to appreciate their importance, to her husband's amazement and even concern.

Indeed John's story has many elements in it to reflect about. How can it be that someone who suffers so much, can still be, on the whole a happy person? Why are such small advances so important for the family? Why can they be happy with such small things? Why is a simple person like John so happy to see his sister, even if she did sometimes tease him?

John's story is a wonderful example of how love keeps on going, even in the face of setback. When science can alleviate suffering, that is great, but science doesn't have all the answers. Still, even when medicine is at a loss, the life of a suffering person is not worthless. It is interpersonal love that makes the life of a family worthwhile, not a big house. In this story, love trumps suffering, because love gives suffering its real sense.

Let's remember this: if we did not welcome a suffering person or failed to love him or her, we could lose our greatest treasure.

Daan van Schalkwijk writes from Amsterdam. He teaches statistics and biology at Amsterdam University College, and is the director of Leidenhoven College, a collegiate hall of residence in Amsterdam. Visit his blog, Science and Beyond.

This article is published by Daniel Bernardus van Schalkwijk and under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
Follow MercatorNet
MercatorNet RSS feed
subscribe to newsletter
Sections and Blogs
Family Edge
Sheila Reports
Reading Matters
Demography Is Destiny
From the Editor
contact us
our ideals
our People
our contributors
Mercator who?
partner sites
audited accounts
advice for writers
privacy policy
New Media Foundation
Level 1, Unit 7,
11 Lord Street,
Botany Australia 2019
+61 2 8005 8605
skype: mercatornet

© New Media Foundation