Tumbling into trust

Siobhan going skydiving, September 2012


Michael Rock, Ed.D., D.Th., Ph.D.
Simorgh Magazine, Vol. 3, Issue 43,
September 2012, pp. 51, 50

[slightly edited]

It is difficult to imagine that the true story I am going to tell you actually happened. It did. As you will quickly see, this article bears a deeply personal dimension to it by its very nature. Let me begin with a bit of background.

I have a wonderful daughter, named Siobhán. As a child she was always filled with love and fun. She wanted to live life to its fullness. In addition to attaining three academic degrees, she became a school teacher and a fitness instructor. I remember her vividly telling me about a small boy in her grade 3 class who was not settling down to do his work. Siobhán went over to his desk to get him to concentrate on his school work. When she reminded him to settle down, he looked at her and said, “Whatever floats your boat, ma’am!” Siobhán told me she had a challenge not to laugh, but being Siobhán, while she can be very caring, she can also be firm, and thus insisted that the little boy ‘get back to work.’

Three years ago Siobhán gave birth to a little girl named Ella. Two years later there came along a little boy named Dominik. Both have the deepest blue eyes I have ever seen. She and her husband both speak multiple languages and so wanted the children’s names to be pronounced without a problem in at least three languages. Thus, today (September 2012), Ella can speak and understand English, French and Polish. Dominik will get there as well (see "Photos from Siobhán" button).

When Dominik was just a newborn, something happened to Siobhán that would change her life forever. She was only 39 at the time but after extensive tests at two hospitals, one a week-long test at the Ottawa Civic Hospital, Ontario and the other at the teaching hospital in London, Ontario, the results were essentially the same: Siobhán had ALS or Lou Gehrig’s disease, a disease that disconnects muscles in a person’s body from the brain. Eventually the person cannot speak, has trouble breathing, and as Siobhán told me at the time, “The doctor said many patients die in their sleep.”

She now has had ALS for one year, is in a motorized wheelchair even in her home, cannot walk, look after the babies – in short, she is unable to do the many physical things each of us take for granted. And just before this, she had been a fitness instructor for years! She can still talk. The length of the illness can vary; the average lifespan is 3-5 years. CBC News did a story on her in March 2012: “Ottawa Mother Copes with ALS.” So did CTV News: “Siobhan Rock.” In an Edmonton-Ottawa telephone interview held with Siobhán that was published in an Edmonton newspaper (November 2011), called "Society must face up to its human mortality", Siobhán has this remarkable self-observation. I had just told the reporter, as I sat with her in her Edmonton office, how much Siobhán has taught me by her response to this deadly disease. Siobhán responded immediately with pragmatic directness: “It's my personality to do the best I can with what has been given to me. I am grateful. I practise gratefulness and being thankful. That is what helps me to get through.” 

So, you may be asking: what else is there to this article that you wrote about at the beginning? Well, are you ready? Even though her ALS seems to be progressing fast and that she is in the motorized wheelchair even in her home, on a recent beautiful sunny Sunday morning, September 2012, Siobhán went skydiving! Yes, skydiving. I watched as they bound her hands and legs and then taped them so they would not flail around with the jump. She was harnessed from behind with the expert (see picture to the left). The group is flying to 12,000 feet, then jumping, and at 5,000 feet, the parachute opens.

When Siobhán landed - for many, I’m sure, including me - one might possibly expect looks of fright on her face … but not Siobhán! Her expert instructor removed her wind glasses because, as she told me, when they jump, the wind is 200 km. per hour!

For me I could not help but reflect not only on her ‘courage,’ as many people at the airport kept saying, but especially at her zest to live life to its fullest as she envisions it. She has told me in the past, “I choose to be happy and I choose to live being happy!” Not much to add to such an openness to and trust in life.

And so, Siobhán’s skydiving event (see Video #3 and Photos) brings me to the spirituality behind the title of this article. I say “spirituality” because spirituality is a word that describes what animates each of us. Everyone has a spirituality; we cannot not be spiritual. Being spiritual makes claims on our vision of hope, our search for meaning, our energy, if you will, that pulls us beyond, even though it includes our individual worlds, our ways of seeing life, our social and interpersonal worlds and interactions with others, and the world of what we posit as ultimacy, of transcendence, of meaning and of purpose. One scholar writing in this field of spirituality names ‘ultimacy’ as ‘outermost mystery.’

As I reflect on what Siobhán lives and breathes, and probably not often without even thinking about it, her sense of spirituality models for me and others around her, the importance of living life to the fullest, of seeing goodness all around us, in spite of tragedies, in spite of suffering, and that hope will always win out. Dr. Victor Frankl, the doctor who survived being in the Auschwitz concentration camp for 3½ years, wrote a masterful little book many years ago – Man’s Search for Meaning – and in that book he writes that if we can find a why to what we are going through, then we can get through any how. That is, if we can reframe our experiences so that they can have a sense of meaning for us – outrageous as the experience might be or seem – then we can survive. Here’s Siobhán, a young woman, with two small children, and she’s dying of ALS. When? We simply do not know. But we know that dying as a result of ALS or Lou Gehrig’s disease is not an option. To quote the 20th century comic, W.C. Fields (1880-1946), “We ain’t getting out alive.” While he was referring to each of us, the point is absolute for someone with ALS. There is no cure available.

And so, Siobhán, who could be bitter, refuses to taste from that cup. Instead, she evokes a sense of gratitude for life, for friends, for joy, for openness, for children, for her husband, for her friends, for her family – in short, for the goodness of life in spite of! Siobhán knows something about the secret of life that many of us need to hear. It is why a series of videos have been done on YouTube (see "YouTube Video Series" button).

Thomas Merton (1915-1968), monk, writer and poet, once wrote, “I snap the fingers at life!” Merton was fully engaged in life. Though he lived his life in a monastery in Kentucky, his writings have reached millions and millions of people. Siobhán’s story seems to bear such marks as well. People from all over the world – Vietnam, Australia, Canada, United States, Ireland, England, and many more countries – know about Siobhán and to a person the message they are learning is the same: “Life is to be lived to its fullest. One must celebrate living the goodness of life. One needs to be always filled with gratitude.” I received a prayer from one of my friends one time. It’s a prayer that she got from her sister in Halifax, Nova Scotia, and it expresses everything quite simply:

Happy Moments, Praise God. Difficult Moments, Seek God.
Quiet Moments, Worship God. Painful Moments, Trust God.
Every Moment, Thank God.

It was only fitting, therefore, that a title and subtitle such as “Tumbling into Trust: Celebrating the Goodness of Life” would be the right one. When Siobhán left the airplane for the skydive, hands and feet all bound up, literally tumbled … but for me, she was tumbling into trust. Einstein said one time that the most important question we need to answer in life is, “Is the universe personal or not?” For Siobhán there is an unqualified “yes.” The goodness of living needs to be celebrated each and every day. Life is good and no one can ever take that away from Siobhán or from any of us.