Locating legacy in illness.
I motioned for Ana and Sofia to follow me down the long corridor to my office. I walked a few paces ahead, glancing at the new patient information sheet in my hand. I jumped to the reason for Sofia's referral, described by an unidentified emergency room provider in one phrase at the bottom of the page: "Eight-year-old Puerto Rican female with chronic and persistent abdominal pain and leg paralysis with no known organic cause." I flipped the referral closed. As a fee-for-service therapist working in an underserved community within an overtaxed health-care system, I was accustomed to nebulous referrals from anonymous sources.
Right away Ana wanted to know about my ability to care for her daughter by asking, "How do you do with ailments that are real in the body but can't be seen?". I explained my beliefs about the many ways we see ailments in the body by describing my experiences working with countless families who had physical pain and required support in seeing that pain. I asked Ana to share their attempts at seeing Sofia's pain. She explained the many nights in the emergency room, visits with specialists, and invasive diagnostic procedures Sofia endured over the last several months.
Sofia described their pediatrician, Dr. Lawrence, as an anchor in the storm. Ana explained that Dr. Lawrence was a consistent presence throughout Sofia's childhood. At the time they began therapy, Ana presented to Dr. Lawrence's office two to three times per week seeking assistance for Sofia's pain and notes to excuse her from school.
Over the course of several weeks, the family shared stories of painful medical procedures and extreme dietary plans prescribed to them by doctors to identify the etiology of Sofia's illness. Ana described her simultaneous relief and frustration when each test result indicated that there was no organic cause for Sofia's debilitating pain. We talked about the push and pull Ana's family experienced as they prayed simultaneously for abnormal and normal test results. They did not want their child to be sick, but they wanted a diagnosis and treatment. Sofia diverted her eyes from mine, "They think I'm making it all up. They think it's all in my head."
Ana and Sofia then missed three consecutive therapy appointments.
I picked up the phone and called Dr. Lawrence, "I was waiting for your call." We spent the next hour discussing our treatment approaches, both equally ineffective in reducing Sofia's abdominal pain and increasing her mobility. At the end of our call, Dr. Lawrence said that Sofia's school filed neglect charges on Ana because of Sofia's chronic absences from school, which were unsubstantiated by a biomedical diagnosis. The Department of Children and Families opened a case and mandated the family to attend therapy and address the psychosomatic nature of Sofia's illness.
The following week I walked into the waiting room to find Sofia huddled in Ana's lap. We filed into my office and ritualistically emptied a box of Jenga blocks onto the floor. Sofia opened the meeting by sharing her family's plan to move back to Puerto Rico. Ana explained that she and Sofia's grandmother believed that returning there would alleviate Sofia's pain and suffering.
"Why is that?" I asked, adding a block to our tall and wobbly tower.
Sofia eyed me knowingly, "Because it will make Mom and grandma feel better."
Ana explained that Sofia's grandmother experienced widespread body pain, sadness, lethargy, and inability to move from the bed when more than a few months passed between visits to their family.
Ana gently pulled a block from the tower. "It kills me to see my Mom in pain. That's why we missed our appointments here. I was so sick, I just couldn't move."
Ana handed the block to Sofia, "Here, you try."
Sofia took the block and twisted the top of it into the palm of her hand. "I hate when Mom's sick."
Ana reached out her arms and Sofia climbed into her lap. "I hate when you're sick too. That's why we see the doctors."
A few hours after my appointment with Sofia and Ana, Dr. Lawrence left a voicemail asking for me to return his call. After two rings, Dr. Lawrence picked up the phone, "I think Ana and Sofia mirror physical symptoms." Dr. Lawrence described a recent visit from Sofia, who described symptoms that Ana's primary care doctor reported she experienced the week before. I added that Sofia's grandmother might also experience similar symptoms. Dr. Lawrence and 1 both noted the significance of Ana's belief that their return to Puerto Rico would alleviate Sofia's pain.
I told Dr. Lawrence that I would begin to create a community genogram with the family in our next meeting. I explained that the purpose of the community genogram was to illustrate the social and historical contexts of families' lives (Rigazio-DiGilio, Ivey, Kunkler-Peck, & Grady, 2005). By extension, we could explore their multigenerational meanings around illness causation and healing practices. We ended our call with the promise of keeping in close communication.
In our next meeting, I introduced Ana and Sofia to the concept of a community genogram by sharing a picture of my community. When my drawing lay before Ana and Sofia, I learned about the aspects of my personhood that mattered to them. Sofia asked about my somatic experiences: "When did you or your friends feel pains that no one could see?". Ana was curious to know stories about a very dear childhood friend, a Mexican-American woman whose family healed through prayer. Conversations about my community, my positions of privilege, and my areas of fragility were essential for our relationship and work together. Ana explained it best: "Now that we really know you, you can really know us. And then we can be in each other's pictures."
We sat on the floor with a large piece of paper and began constructing a picture of Sofia's community context. Using the examples from Rigazio-DiGilio and colleagues' (2005) book as a guide, I asked Sofia questions about herself, her family of origin, extended family, and wider community networks. Sofia's mom and grandmom served as coexplorers with Sofia on this journey, providing stories and information to enrich Sofia's findings on weekly phone calls between our therapy meetings. Over the course of the next several months, we detailed and described Sofia's illness experiences.
We learned that a seminal narrative in Sofia's family legacy connected deep understanding of others with embodiment of their immediate experience. After a conversation between Sofia and her aunt about health and illness, Sofia offered a family motto in our next counseling meeting: "When people I love are in pain, I am in pain too. When people I love are happy, I am happy too." We created a layered narrative about Sofia's history of physical pain and paralysis, rooted in analogous experiences of both living and deceased family members. We uncovered a long history of family members engaging intuitively with both the pain and joy of the world around them.
Sofia and Ana consulted with elders in their family and community, learning about the role of folk medicine in their family's approach to healing and the history of folk medicine in Puerto Rico. Sofia and Ana learned about the relational ways in which individuals in their family deeply connect with one another through illness and healing. Each week Sofia added connections between family members, family narratives, and sociocultural influences to her community genogram. Sofia's illness became one part of her and her family's legacy and cultural tapestry. Ana described the renewed connections that she and Sofia shared with their family members.
As Sofia and Ana spoke with their family members more often, Sofia's leg paralysis and stomach pains decreased. Sofia began attending school regularly and visiting less with Dr. Lawrence. The Department of Children and Families closed their case. Ana asked if we could conclude therapy together but remain in touch so that she could help other children with pains that doctors could not see. I agreed.
Sofia wanted us to commemorate her final therapy meeting by hosting a goodbye party to sickness. Upon Sofia's request, we spent several meetings beforehand constructing a pretend guest list and seating chart. When 1 asked Sofia to explain her reasoning behind seating choices, she began with Dr. Lawrence and me. "Well, obviously you and Dr. Lawrence are sitting together because you helped me find my sickness so then I could ask it to leave."
Cameron Kiely Froude, PhD, LMFT
University of Connecticut
Cameron Kiely Froude. PhD, LMFT. Department of Human Development and Family Studies, University of Connecticut.
Correspondence concerning this article should be addressed to Cameron Kiely Froude, PhD, LMFT, who is now at St. Mary's Family Medicine Residency, 1160 Patterson Road 42, Grand Junction, CO 81501. E-mail: kielycam@ gmail.com
Rigazio-DiGilio, S. A., Ivey, A. E., Kunkler-Peck, K. P., & Grady, L. T. (2005). Community genograms: Using individual, family, and cultural narratives with clients. New York, NY: Teacher's College Press.
Received June 25, 2015
Revision received December 23, 2015
Accepted March 4, 2016
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|Title Annotation:||illness experienced by family members with an unknown cause|
|Author:||Froude, Cameron Kiely|
|Publication:||Families, Systems & Health|
|Date:||Jun 1, 2016|
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