We invite you to read Christine's own story about pilgrimage through her experience with a diagnosis of rheumatoid arthritis. Be sure to visit the links in her bio shared at the end of her story. Watch for an upcoming book review and interview with Christine to follow in a few days on our blog.
Chronic Illness as a Pilgrimage - Christine Valters Paintner
I was first diagnosed with rheumatoid arthritis when I was 21 years old. The only other person I knew at the time with this disease was my mother and her body had been ravaged by the effects of deterioration, with multiple joint replacements and eventually use of an electric wheelchair for mobility.
I first dealt with my diagnosis through denial. I had just graduated from college and traveled across the country to begin a year of volunteer work. I managed to push my way through fatigue and pain for about six years before I was forced to stop. I was teaching high school at the time and my wrists were growing ever more painful. An xray revealed severe damage to the joints despite the aggressive medication I had been taking.
My doctor urged me to stop teaching, it was too much for my body. Thankfully I had private disability insurance through the school where I worked that helped sustain me financially first through a year of rest and healing and later through five years of graduate work to earn a PhD. I lived much of that time with the fear I would never be able to support myself financially. I was profoundly grateful for my loving husband who worked to provide for our needs.
During that first year of disability, without any work to claim when people asked me “what do you do?”, I was often in emotional pain as well over the loss of an identity. I didn’t look sick and often came judgment from others, or inner judgment about why I wasn’t trying harder. Many were supportive, but others offered unwelcome advice or explanations about how I wasn’t thinking the right thoughts. Dr. Joan Borsyenko describes this as “new age fundamentalism.”
A great gift arrived to me one day at church, when a woman asked me that dreaded question. I responded about taking time for healing and she said, “oh, you’re on a sabbatical.” And with that phrase came a wave of relief, a connection to ancient wisdom about our need at times for deep restoration.
Language has a way of breaking us through to new understandings, to shift us out of old stories which bind us. I feel similarly about “pilgrimage.” When I first encountered this concept I felt enlivened by the idea of meaningful and sacred travel. My father had worked for the United Nations and exploring other cultures was always highly valued in our home.
But the more I explored the root of the meaning of pilgrimage, the more I discovered it as an empowering way to frame much of our life experience, especially those times we are thrust onto a journey not of our own choosing.
I often define a pilgrim as one who embarks on an intentional journey to court holy disruption. Disruption is a welcoming in of being uncomfortable, of being called to our own edges. The root of the word pilgrim is peregrini, which means “stranger.” To become a pilgrim means to embrace our own strangeness, the strangeness of the journey we are on, as a way of breaking open all of our assumptions and expectations about how the world should work.Certainly illness moves us into a landscape where we feel keenly this sense of being a stranger – whether to our own bodies, or in navigating health care systems and doctors to find relief and support.
Understanding my life as a pilgrimage, and especially my experience with chronic illness as a kind of sacred journey, doesn’t require that I dismiss the profound pain and uncertainty this brings. Instead it asks me to embrace mystery and unknowing, to seek fellow companions along the way, to understand that the profound discomfort of having so much stripped away can reveal my own gifts in service of healing others.
The year I turned forty I flew to Vienna, Austria by myself for a time of retreat. During the flight I developed a pulmonary embolism which took me several days to get treated. It was terrifying to realize I could have easily died walking alone on those city streets. In allowing myself to be fully present to the fear, to witness my experience with profound compassion, I found myself moving away from the victim’s cry of “why me?” We will never know the answers to those questions.
There is powerful Greek myth about the young maiden Persephone who is abducted into the Underworld by Hades. It is a story of innocence lost. Many of us diagnosed with serious illness feel in some ways “abducted” by forces more powerful than ourselves. Persephone was told that if she ate anything while there she would need to stay, and while some versions say she was tricked into eating the pomegranate seeds, I prefer the versions where she makes this choice herself. As a result she is required to stay there part of each year and becomes the Queen of the Underworld.
She moves from victim to sovereignty. She steps into her role as guide and companion to others who find themselves in that Underworld territory. She becomes the wounded healer.
Pilgrimage is a complex journey. It does not mean being a tourist and visiting a foreign land to bring back photos, souvenirs, and another thing to cross off the “bucket list.”
Instead it means being willing to court holy disruption, to become profoundly aware of our inner movements, to claim responsibility for our choices about how to respond to this place we find ourselves in, and welcome in discomfort and strangeness as carrying the possibility of new revelation.
Christine Valters Paintner, PhD is the online Abbess of AbbeyoftheArts.com, a global virtual monastery offering resources for contemplative practice and creative expression. She is the author of 8 books including her most recent The Soul of a Pilgrim: Eight Practices for the Inner Journey which evolved out of her and her husband’s own midlife pilgrimage experience of leaving everything behind to move to Ireland where they now live and lead pilgrimages to sacred sites.