(Delivered to Post-Polio Retreat, August, 2014, at Easter Seals Camp near Empire, Colorado)
To my mind, spirituality has to do with perspective. Perspective, in fact, makes all the difference. In the movie about Franklin Roosevelt's polio, Eleanor Roosevelt gave to Franklin as he was resisting giving a speech nominating Al Smith at the convention. He was thinking that all people could see would be his legs. She said, “they'll never get past your legs, unless you do.” That's perspective.
A definition: Spirituality has been variously described as a person’s relationship with God, the holy, or the whole; beliefs about the meaning, purpose, or mission of life; feelings of interconnection with the universe or all living things; commitment to values, ideals, and altruism; and being open to the mystery of existence. Spirituality is not necessarily associated with religious membership, but is related to attempts to answer questions about the meaning of life and how humans should live. – Post-Polio Health International, "Handbook on the Late Effects of Poliomyelitis for Physicians and Survivors." © 1999
Spirituality also has been described as “the most powerful resource against suffering in the human services tool kit” (Vash, 1994). Practices include meditation, prayer, mindfulness, contemplation, thoughtful reading and conversation, and worship sharing. People claim that the insight, knowledge, and feelings of well-being gained through the development of their inner lives have profound effects on their attitudes, relationships, and actions. Adversity is often a catalyst for psychospiritual growth leading to a change in perspective about the meaning of life. It has been said that having a disability gives one a different perspective, not a different personality (Covington, 1999).
I was born the first of eventually 4 children to a Methodist minister and his wife. So the Methodist brand of the Christian religion was a constant: I grew up listening to my dad's sermons as I slept on the pew, tried to make sense of some of it first in my own mind and then through questions, and then began to put things together and question the connections as I grew.
Luckily neither parent was not entirely put off by questions. In fact, they thought my constant asking “Why, daddy, why?” was kind of cute—until the questions got too personal or too probing in my teen years. Then it became, “you think too much.” My dad once got me the book “The Christian Agnostic,” by Leslie Weatherhead (1965) which I think was a very caring and astute thing to do.
You can hear beneath some of this, I suspect, the even deeper questions of “Why?”
“Why did I get sick?” (My childhood answer was, “I ate dirt”--not bad, considering that the polio virus enters through the digestive system.)
I don't remember ever asking the direct question, “Why did God (do this to me—or my family) or (allow this to happen)? My dad may have heard some of this underneath, as he also gave me the book “The Will of God” (Weatherhead, 1944) which lays out four types of God's will in an attempt to answer some of life's most vexing questions. It helped—for a long while.
I think the reason I never asked the question “Why did God do this to me (or us, our family)?” was that I had heard from my earliest days my dad's own version of the Christian faith:
- a God who loves persons like a father (later I understood, also like a mother) loves a child,
- a God who wants persons to do good to self and others,
- a God who doesn't condemn people to hell for bad mistakes, and
- who doesn't punish, but also doesn't protect from consequences of problematic decisions.
My spiritual development was at first very childlike (“if Santa Claus isn't real, what about Jesus??”); then very adolescent-like (the “why” questions got a lot sharper and following rules, even pretty sophisticated ones in my case, was very important), then more adult, as I began to understand the complexities of life from a spiritual and/or religious point of view.
Somehow, I thought that getting polio was just something that happened to people, like falling out of a tree, like making oatmeal with too much salt, like tornadoes and hailstorms. Faith, for my father in particular, was something that not only helped us focus life, it also helped us cope with what life brought along. Faith, spirituality, is that which gives perspective on life.
So on one level, polio didn't form a huge part of my faith development. My parents told me they were committed to treating me like they would any child, not specially because of polio--though that proved very difficult, simply because of all the complications that polio, rehab, PT, and corrective surgeries and devices and childhood illness added to our lives as a family.
However, on another level, polio has had a big influence on my faith development, especially in the last 25 years as I have had to deal more with the limitations that the aftermath of polio put on my life. I came late to the understanding of the late effects of polio and how my behavior both helped and exacerbated the development of new symptoms.
What are some of the influences of the polio experience on my spiritual development?
The increasing limits that post-polio has put on my body and my life has perhaps given me more patience: being patient with my body and the need to listen ever more closely (or mindfully) to it and make decisions that will “conserve” and “preserve” what I have. As I interact with others, as a result, I think I have a greater level of patience with them and their own limitations.
Facing directly what is going on and what has gone on with my life and how my body limits my experience has given me a bit more empathy and more understanding of others' situations. It has also given me an especial sensitivity to those who are different, stigmatized, marginalized.
I wonder, also, if the progression of polio, through the various stages, has given me a sensitivity to the process of life, as we grow through various “stages”?
- The acute stage with all the pain, fear, desperation, loneliness, abandonment, and dependence;
- the rehab stage with all the hard work, the pain, the need for commitment to a program, a process, and a discipline, the recognition that rehab could bring only so much “recovery”;
- the coping with the everyday tasks of growing up, school, family issues, career development and changes;
- and finally the realization that I wasn't done with polio, and polio wasn't done with me yet.
Maybe this viewpoint was influenced by my Methodist upbringing: The founder of Methodism, John Wesley, has a kind of 3-stage view of grace:
- from prevenient or “preparing” grace, that grace that is there before we even know it and gives the urge to look for God;
- to saving, justifying, or “accepting” grace, that grace that we come to accept as bringing us into relationship with God;
- to “sustaining” or sanctifying grace, that grace that urges us to ever more perfect love and loving.
Various writers have written their own understanding of personality, faith, or spiritual development. You may have heard of Abraham Maslow's hierarchy of needs and maybe even his book “The Farther Reaches of Human Nature” which outlines development into stages beyond the ego and the self into transcendence. Erik Erickson had specific challenges that persons struggled with at various stages of their lives, leading to full maturity and ego integrity. One developmental framework that has been helpful to me is that of Ken Wilber, in the book “Transformations of Consciousness” which goes from birth through development of the self, and beyond, through the dark night of the soul, to God-consciousness for a few (Jesus and Buddha, to name two).
The nice thing (if we can call it that) about these developmental ideas is the sense that life is a never-ending journey, that there is always something “beyond” where we are at any particular moment in our lives. There is the sense of moving, of process, and underlying it all is a sense of hope.
Spirituality to me isn't a shield from life, but an invitation into full participation in life and its opportunities and a promise of a future of meaning, and for Christians, anyway, a promise of a Presence that will be there through it all.