By Monika Aldarondo
“These numbers are so high, they are useless to me.” My high risk obstetrician, who I loved and is one of the best in Boston, had never seen a pregnant mom with Primary Sclerosing Cholangitis was talking through my blood test results and what they might mean for my baby and my health. This experience of being the only PSC patient of a stumped medical professional is common among PSCers. It is especially common for women with PSC who become pregnant or want to become pregnant. We are a rare subset of a rare group of people. It is tough to find others to ask, “Did you experience this? Is this normal?”
I believe and have experienced that stories have power. I had the privilege of going to the PSC Partners for a Cure annual conference when I was wondering if it was possible to be a mother with PSC. I sat in a small group and asked the few women in the group that had had babies while diagnosed what their experiences, joys, and regrets were. I had the courage to become a mom in large part because they shared their stories.
The sharing continued online. Short messages and answer threads can be a lifeline when no one else around you, even your doctors, can relate. But a need for more was clear. My role at the high school I taught at was to lead our senior project, where we had young people look at the needs in their communities and use their artistic skills to design projects to address those needs. After nearly a decade of involvement in this project, my natural inclination was to ask, what can I do to fill this need? The idea for PSC Mami was born.
I tried to begin during my pregnancy but in hindsight the uncertainty was too great. I tried to restart during my wait for transplant, but the uncertainty was too great. The project transformed over the 3 years of mental incubation into the PSC Mami podcast that launched, fittingly, on the 9 month anniversary of my transplant.
I am a great admirer of the late oral historian Studs Terkel. He spoke of the power of the human voice and the meaning that can be held in a pause or in a sigh. These communications that are challenging to capture in writing. For me, the power in creating a space for women to tell their own stories and to hear each other is that there are lots of moments where we sigh, choke up, laugh that laugh that holds the weight and absurdity of it all, or say that cliche phrase with the power of hard fought experience that reveals its core wisdom.
I feel so honored to hear the stories of all the women who have shared their story with me and have trusted me to shape and share it with others. There are women who joyfully and without complication got pregnant and have children. There are stories of losing the ability to realize their visions of motherhood. There are stories of redefining motherhood in unexpected ways that challenge and uplift in the most unexpected ways. There are stories of what life with kids means for PSCers and transplantees. My goal is to share stories that honor all paths and give space for all possibilities.
I invite you to listen to the podcast and to share your own stories. Your story could give someone the courage to take that next step on their path, wherever their path leads.
Stories, resources, and how to share your story can be found at pscmami.com