There are many ways that Firefly Sisterhood considers itself agnostic: we do not align ourselves with any one health system; we train our Guides to not promote any one doctor or clinic; we work with as many local nonprofits as possible to help our participants receive as much support as possible; and we do not train our Guides to offer spiritual/religious support.
Dr. Pamela Ayo Yetunde, Th.D, a researcher in the Twin Cities, reached out and, in an email recently, asked, “Are Firefly Sisterhood mentors (Guides) ever asked (by women recently diagnosed with breast cancer) for spiritual support?”
We took this question seriously, because in every interview conducted by Firefly’s Program Managers – whether that be an interview to request a Firefly Guide or an interview to become a Firefly Guide – they are asked, “How relevant is your spirituality/religion in your cancer experience and how relevant is it for your match?” Jenny Cook, Firefly’s former Program Manager, shares that, “I ask this question at the very end of every interview because by that point, we are as comfortable with each other as we possibly can be and this can be a sensitive topic.”
Through countless interviews, conversations, and matches with women who have experienced or are experiencing a breast cancer diagnosis, Jenny has observed that, “many people lean in, question, or explore their faith or spirituality and it becomes intertwined with their cancer experience.” Finding the right Firefly match can be challenging, and knowing a Firefly Guides’ spirituality and their comfort in proving spiritual support is critical for connecting women recently diagnosed who are requesting a Guide that can share this aspect of the breast cancer experience. Firefly also refers women to local spiritual resources such as Gilda’s Club, Comfort Club, and Pathways when additional support is needed.
For Dr Yetunde, or “Ayo,” as she likes to be called, this question to Firefly about the spiritual needs of our participants is in line with research she is currently conducting about how women who receive a cancer diagnosis also receive (or do not receive) religious and/or spiritual guidance or support from the person who first diagnoses their disease. Firefly has shared, on social media, the questionnaire for those who wish to offer their anonymous answers to her short survey.
“I had a client who was diagnosed with breast cancer. Because she is a minister who believed in and preached about the power of prayer, she didn’t accept traditional cancer treatments because she felt others may see her as a poor spiritual practitioner or that it would undermine the power of her followers’ prayers.” It is with sadness that Ayo continues, “She allowed the cancer to grow for four years before she was willing to receive medical treatment and by that time, it was too late.”
Her study focuses on women with cancer or had cancer. “I don’t think women have as much agency in patriarchal, hetero-normative spiritual and religious institutions (those led by males who are heterosexual).” She notes that even female monks in some Buddhist traditions shave their heads and bind their breasts to appear without gender or gender expression, and not be sexually enticing to the male monks. “I like to research how women make meaning about their bodies, such as how women deal with the presumption of ‘reconstruction’ following a mastectomy.”
“I really want to focus on the first person that a woman hears her diagnosis from: that moment she truly understands she has cancer, “ begins Ayo. “Is it the radiologist? The oncologist? A primary care doctor?” She continues, “Does this person need additional training in helping women with their spiritual needs or questions as they relate to her cancer and its treatment?”
As for how someone could begin exploring spirituality, Ayo recommends “focusing on what produces good in the world. Start with the commitment of not harming your self and others.” She suggests, “Protect and have reverence for nature, of which human beings are a part. Really look at how we are with each other and refrain from imposing our ugliness on the world and each other. Focus on the interconnections and be devoted to doing good.”
For those who want to be more attentive to the spiritual needs of others, Ayo suggests “writing your own spiritual autobiography. Detail everything you can remember from your earliest memories. Then put it down and come back to it about a month later to add details that the initial writing provoked.” After that, Ayo says firmly, “Own it as your journey. A journey that is unlike anyone else’s despite similar backgrounds or experiences.” She believes that in doing this, you’ll reduce the likelihood of projecting onto others how they should feel, what they should do, etc. in their own journey.
As an Interfaith Buddhist Practitioner, Ayo cites the work of authors Audre Lorde [The Cancer Journals (1980), A Burst of Light (1988)], and Ayya Khema [I Give You my Life (1998)], as inspirations for her research. For those who want to cultivate a spiritual life, she recommends reading Sufi Poets Rumi & Hafiz. “I prioritize spirituality. I give myself the best things early in the day: I get up early, meditate, spend time in contemplative centering prayer, then exercise. This way, I can bring my best to people who could very well be at their worst.”
Our Firefly challenge for you today: bring your best to people who may be at their worst today!
Thank you to Jenny Cook, our outgoing Firefly Program Manager, for her countless, highly personalized Firefly matches and making time for the little things, like sharing information for a blog. Much appreciation for Dr. Pamela Ayo Yetunde, for her work in caring for the spiritual aspects of a woman’s cancer experience and for sharing her own knowledge and wisdom on the topic!
Written by Amy Tix, a 13+ year breast cancer survivor and Firefly staffer who is still trying to make meaning about her breast cancer scarred body in a patriarchal, hetero-normative society.