Siobhán (1971-2014)

Book card available for everyone at Siobhán's funeral

WOW! What a Ride!

Michael Rock, Ed.D., D.Th., Ph.D.
Simorgh Magazine, March 2014

In September 2012 I wrote an article called “Tumbling into Trust: Celebrating the Goodness of Life” (click on the button "Skydiving" in the menu to your left). It was just after my daughter, Siobhán (a Gaelic or Irish name, pronounced “Chevaun”), was diagnosed with ALS or Lou Gehrig’s disease. One of the more common forms of what is known as Motor Neuron Disease (or MND) is Lou Gehrig’s disease or ALS (amyotrophic lateral sclerosis) – a neurological disease with seemingly no cause or cure. The average lifespan is 3-5 years. Siobhán died on January 12, 2014, after just 2.6 years and left behind two wee ones: Ella, age 4.5 years old and Dominic, age 2.5 years. The physicist, Stephen Hawking, has had the disease now for more than 50 years, but he is considered an exception. Death often comes with asphyxiation and/or pneumonia. One of my medical friends described ALS as a “pernicious disease” because not only does the patient feel helpless physically but those around the person often also feel so helpless. Mental faculties in the ALS patient remain intact for the most part.

What I want to address here in this article is the tremendous positive sense of spirituality and inspiration that Siobhán lived, not only throughout her life but also in her dying and death. Her continual focus during these past 2.5 years was on how to get the message about ALS out to the public, to make people more aware of the disease. There is a lot in society these past few years that we could call “me-ism,” that is, a spirituality that promotes an “all about me” type of thinking and feeling, often masquerading as ‘self-actualization.’ But one thing we should keep in mind is this: even though Abraham Maslow’s now popular Hierarchy of Needs model had as its ‘highest’ point of development what he called “self-actualization,” a little known piece of research that he wrote towards the end of his life, however,  has recently shown that he believed that there was also a sixth need level: self-transcendence. This sixth level was an awareness of ultimacy, of going beyond one’s self-actualization and self-preoccupations and being there for others. True human fulfillment wasn’t “all about me” but transcended that narrow focus to include others, and for some people, the Other, or what they understand as God. To me Siobhán lived out her life at that level … and beyond.

She was a grade school teacher as well as a fitness instructor for many years. She was just 42 when she died. I recorded her journey for the 2.5 years that she lived with ALS by designing a website “legacy” for her, something that we had discussed and obtaining her own domain name: Who would have thought that someone with so much to live for would be taken from us so quickly. She told an interviewer in Edmonton, Alberta one time that early in life she chose to be happy and chose to live life being happy. In a similar way she told me personally that she was also choosing to die well. And that she did … albeit her death was so sudden that it took my breath away – quite literally.

If you watch Siobhán in the stories on the website about the many awards, the television interviews and the ten videos that she was able to speak in to promote awareness of the disease, I think you will agree with me that she was exceptional as a person and as a witness to the dignity of life. She lived well; she died well. That we all have the courage to do the same. On the home page of the website, I scanned a copy of a bookmark that was available for everyone at the funeral. It had a quote on the flipside of her picture that captures Siobhán’s sense of life and spirituality very beautifully:

Life should not be a journey to the grave
with the intention of arriving safely
in a pretty and well preserved body,
but rather to skid in broadside in a cloud of smoke,
thoroughly used up, totally worn out,
and loudly proclaiming:
"Wow! What a Ride!"

Hunter S. Thompson (1937-2005)

This sense of living life to the fullest is found, in one very specific way, in video #3, the one that shows her going skydiving! She told me at the time that she wanted to face one of her fears. For me the hardest thing to deal with, after the shock of her dying so suddenly – although we knew her time was quite limited – is a continuing sense of absence that pervades my being. It’s ironic to talk of absence containing so much presence; but it does! Absence for me right now is very real, but presence is what defines so much of Siobhán’s spirit of life because she is so present to so many today even though she has ‘crossed over,’ as they would say in India.

I often use the paradoxical term “dying to live” when speaking about her dying and death because I believe she continues to exist. We do not have any clear images of what that existence looks like; some people have their religious convictions to provide some comfort. But life does go on … albeit in an altered state of existence (1 Cor. 2:9). When I was a young person I was fortunate to have a very wonderful father figure, Geoff, a man with white hair and white beard from Wales. He and his wife, Marie, from Ireland, were married for 50 years, but had no children. I suppose in some ways I was one of the many young people who filled in the gap somewhat. When he died in 2003 a family card with the following poem was distributed, one that I think also captures Siobhán’s spirit so eloquently as well and which is also on the website home page:

Do not stand at my grave and weep
I am not there. I do not sleep.
I am a thousand winds that blow.
I am the diamond glints on snow.
I am the sunlight on ripened grain.
I am the gentle autumn rain.
When you awaken in the morning's hush
I am the swift uplifting rush
Of quiet birds in circled flight.
I am the soft stars that shine at night.
Do not stand at my grave and cry;
I am not there. I did not die.

- Mary Elizabeth Frye, 1932

There are some in our world who will argue that life after death is like ‘this’ or like ‘that’ or that death draws the final curtain. Period. I use the term ‘argue’ quite deliberately. Such people feel so sure of themselves but what gives them away are their efforts at trying to be persuasive. Shakespeare said it well in Hamlet (III, ii, 239) that these kinds of people simply protest too much – a protestation which betrays and exposes their doubts.

Like Siobhán, in no way do I deny life after death. What it is and looks like: Ah! That’s a different matter.

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