There is a well-known Buddhist expression that says, “When the student is ready; the teacher will appear.” I have found this so often to be true. This is the story of my encounter with May, who has taught me so much, not only about myself but also about how to live my life.

I met May fifteen years ago one Sunday afternoon at a ‘braai’ (a South African word for a barbeque) after church.

We were new in town and some kind folk had arranged this get-together for us to meet some people. She was shy; you could see that she did not speak easily unless she was approached, but there was a kindness in her eyes that drew her to me. We soon started to chat and before I knew it, we had shared our life stories.

She was married to Andy. Both of them have been married before. Andy had two boys from his previous marriage and they both had a toddler named Jamie. May and Andy were happy. It was easy to see how comfortable they were in each another’s presence. He worked in the bank and she was a stay-at-home mom. She loved to sing, she told me.

It was only later that I discovered just how good she was at singing. As a young girl, she found that singing helped her overcome her shyness. Her naturally sweet voice drew attention and before she knew it, she had been entered into a city-wide talent search by her enthusiastic and supportive mother. She won!

That was the start of May’s journey to stardom. Well, at least to recognition for this small-town girl. She moved to Johannesburg where she began to take dance classes and acting lessons to hone her skills. Not long after, she started writing and recording a number of songs. She also played a lead role in the musical, South Pacific. On top of that, she made the finals in a South African television talent search called Follow that Star, she even played the role of Mary Magdalene in South Africa’s first professional touring performance of Jesus Christ, Superstar. 

Then she married Andy and settled down a bit to focus on directing and teaching, all the while pursuing her love of singing. Soon, Jamie came along and she still managed to balance her teaching and directing with the role of mother to their newborn as well as to Andy’s 6-and 8-year-old sons.

All of this had happened before I met her. I was astonished at the humility of this woman. So much talent and recognition, yet she was so “normal.” I really liked her. When they moved house and settled around the corner from where we were living, our friendship grew.

Then tragedy struck in 1998.  For some time, May had been experiencing a lameness in her left hand when she played the piano. Once, she even dropped a bowl she was carrying.

“It was as if the power had just gone from my hand,” she told me. She had undergone a carpal tunnel operation the year before and thought the symptoms were connected. Her left hand had taken much longer to heal than her right. Her doctor thought so too, but the symptoms grew worse and then her left leg began to drag. Sometimes, she would just fall over without warning.

At this stage, May was referred to a neurologist in Cape Town as the doctors at home were totally confused.

What passed over the next few weeks must be summed up. Many tests and examinations happened, each time followed by long periods of waiting for results. Ultimately, a diagnosis was found: Motor-neuron disease (also sometimes known as Lou Gehrig’s disease).

Andy and May drove home to break the news to their family and friends. They had both received the diagnosis with a relative degree of calm as they knew so little about the disease. Together with her sister, Cindy, May began to do research.

In a nutshell, the disease affects the motor cells in the spinal cord and brain leading to muscle weakness and paralysis. It affects speaking, swallowing and breathing. Life expectancy is five or six years. One of the ironies of this disease is that brain function is unimpaired so the sufferer is aware of watching herself die!

That was thirteen years ago.

Her little Jamie is now a strapping young man and the older boys have long left home. In fact, May is a grandmother to Faith who is the light of her Nana’s life.

So what has happened to May in the interim? The first problem was that she had to stop playing the piano. I remember the tears we shed when she sold the piano that had been part of her family since her grandmother’s days. She was still able to use an electronic keyboard for a while, but eventually the paralysis affected both hands. Today, she has minimal use of two fingers on her right hand, with which she drives her “Porsche” (a motorised wheelchair supplied to her by the Motor-Neuron Disease association) and keeps in touch with her friends on Facebook. She recorded her last song, one she wrote especially for Jamie, in 2000. After that, her singing pretty much stopped.

She still loves music and manages to keep this part of her life alive by listening to her vast collection of music stored on her computer or by making up cd collections for her friends.

That does not sound so awful, does it? But the reality of May’s life is that she can do nothing for herself. She cannot walk or dress herself without assistance. My once proud friend has been reduced by the humiliation of having to ask her adult son to help her to the toilet.

I arrived at her home one afternoon after her faithful nurse and friend, Ethel, had left for the day. As I walked in, May burst into tears. “I am so glad you are here,” she cried. “I need to scratch my nose and I can’t!”  That seems so trivial, but unless one has experienced such frustration, one can have no idea of what she suffers.

She cannot brush her own teeth and once she is in bed at night, she cannot turn over to the other side, but has to call and wake Andy to do it for her. Because of her restricted movement, her lower legs are always cold and she really loves it when I massage her hands or her feet to get the circulation going again. Every small thing that we take for granted has to be done for her.  

Always, she is mindful of her dependence on others.  I know how it depresses her not to be able to exert any real choice in life, but to be at the mercy of those who care for her. May has told me that there are times when she would like nothing better than to end her life, but she is a person of tremendous faith, who despite all that she has suffered, still believes that she has a task to accomplish in life; a purpose to fulfill.

So, what has May taught me? 

I realized that I need to be grateful for the life that I have, whatever my circumstances. Every day, I should carpe diem (seize the day) and the many opportunities that it affords me. I must not dwell on the past, nor make the future so important that I forget about what is right in front of me.

Today.

Further Reading
1.  Wikipedia article on Lou Gehrig's disease (Amyotrophic Lateral Sclerosis)