Soul sisters spend time together in coastal Maine
By Jennifer Visscher
Since society still struggles with disclosing and discussing health, many find themselves online looking for others with their disease. That is how our Minnesota and Maine friendship began.
Betsy Baker and I have Ankylosing Spondylitis, a systemic inflammatory disorder affecting the axial skeleton, peripheral joints, connective tissues (entheses), eyes, skin and intestines. People with AS often have extra-articular manifestations, such as inflammatory bowel disease (Crohn’s disease and ulcerative colitis), psoriasis and uveitis.
As supporters and advocates of AS awareness, Betsy and I first met in New York City for a fundraiser held by our late friend Michael. He passed away in 2016 from a fall (his spine was completely fused). Since that trip over eight years ago, we have started having what we call a soul sister week of companionship, laughter, music, dance and making art. We’ve been fortunate enough to have many visits that have helped solidify our friendship. We connect deeply because of our shared disease but more so because of something less tangible—a deep soul connection like Irish poet and author John O’Donohue so eloquently describes in his book, “Anam Cara: A Book of Celtic Wisdom.”
“In everyone’s life, there is great need for an anam cara, a soul friend. In this love, you are understood as you are without mask or pretension. The superficial and functional lies and half-truths of social acquaintance fall away, you can be as you really are.”
– John O’Donohue
Over the years our social masks continue to come off. This year Betsy’s visit was met with challenges. Betsy’s flights to Maine were delayed, my biologic IV infusion medication appointment was scheduled when she finally arrived and we are each currently dealing with difficult and diverse symptom flares. These unexpected events led us to learning about how we need to allow one another space within our visits.
It isn’t always an easy balance—we want to celebrate being together and do all the soulful spiritually nourishing things we’ve planned. However, Betsy has to expend energy to travel, where I have to expend energy as the host. With our complex disease, we live calculating where we choose to expend our energy, and we’ve both decided that as long as we are honest with one another and accept that if our visits involve more rest than fun, then we will fill our spiritual cup even if draining our physical one. With this in mind, we are taking care of ourselves.
“Love begins with paying attention to others, with an act of gracious self-forgetting. This is the condition in which we grow.”
For me, art has been a way for me to communicate about AS, as well as my being a personal refuge. It is something I love sharing. Creativity is mindfulness, and color is a powerful healer. I have loved sharing my new studio and a painting session this visit with Betsy.
For Betsy, music fuels her spirit and calms her flares. With chronic pain our words can fail us so music and powerful lyrics are something Betsy shares to express herself—they are her creative communication outlet. The night she arrived, I took her to a small pub to hear a local musician I knew she would love.
Everyone needs an anam cara. I had no idea meeting Betsy would be the beginning of a deep and abiding honoring of self, self-care and true acceptance. Betsy and I have found such a blessing in the midst of our struggle, and it’s really the best medicine around!
“Love allows understanding to dawn, and understanding is precious. Where you are understood, you are at home. Understanding nourishes belonging. When you really feel understood, you feel free to release yourself into the trust and shelter of the other person’s soul.”
Jennifer Visscher lives in Maine and is an anama cara of Betsy Baker, who resides in Rochester, Minn.