My name is Deacon Dr. Shanaé Rebecca Burch of Double Love Experience Church in Brooklyn, NY. I am trained as an Arts in Public Health researcher and educator, as well as a poet, collagist, and theatre maker. I practice what I hope to be described as “community accountable scholarship.”
On Monday, November 4th, 2024, I had my first appointment with Dr. Masahide Kanayama of the New York Endometriosis Center. After 15 years of seeing doctors who paused beyond diagnosing me with PMDD at age 17, I heard the words:
“Shanaé, you have endometriosis. It’s not in your head.”
It was the most miraculous experience because I was fearful that I was in fact making it up, but from his exam and imaging, Dr. Kanayama believed it was Stage III or Stage IV endometriosis. But it was a difficult juncture as I was in a season of transition.
I lived in Brooklyn, NY but worked as a remote employee of University of Florida, and my insurance didn’t have out of network benefits. My job as a postdoctoral researcher would end on 12/31/24 and I was in the process of securing new insurance for 1/1/25 via state marketplace, which I was told most insurance companies would stall surgery for this now “pre-existing condition” for upwards of six to twelve months.
But I didn’t think I could handle the level of pain for that much longer.
My insurance would cover the hospital and anesthesiologist fees ($40,000+ after my remaining deductible of $3220), however the surgeon fee would be 100% out of pocket and was estimated to be $17,000 to $21,000. My parents and I discussed potentially starting a GoFundMe, but in that same breath,
EndoBlack recommended I reach out to MomminWithEndo to see what was possible with their financial help.
My life’s work is listening and creating healthful narratives in service of public health dreaming and wellbeing. Though I had been seeking this diagnosis for over 15 years, there had been several starts and stops because doctors had often compartmentalized my symptoms.
All of the different specialists had different explanations for what was happening to my body. In 2022 after getting COVID, things got worse, and while dissertating, I never felt there was enough time to get surgery for a diagnosis with the pressure of school and time-bound scholarships that required me to perform.
But this marked a new moment for me and I didn’t want to be eaten by the shame of how long this had taken.
I was hopeful that it was not too late to try, and I looked for direction in how to navigate this moment with my head held high. It was for this reason I was trying my best to get surgery before the new year. There was a great deal of work to be done in the final months of my job, but with this diagnosis
I was called to stop — rest, recover, and continue my healing journey.
As someone who studies health disparities and had been living the nightmare of one, I was most hopeful I could bring my skills together to advocate and activate new policies that invest in community euphoria and the ability to construct meaningful futures for ourselves.
November 4, 2024 marked day one of phase II of my journey. Because I needed to make a deposit to schedule my surgery, and because I would need to pay in full prior to the surgery date, I reached out to MomminWithEndo. Receiving funds from their organization would make surgery more possible, and if I could receive their donation in time to schedule my surgery before the turn of the new year, I would be able to more clearly understand how realistic the total out of pocket cost would be for me and my family.
When I contacted MomminWithEndo, I wrote that I understood if it was not possible to receive funds and I was already encouraged just knowing they existed.
A few days later, I received a response saying they could provide funds immediately. It wouldn’t cover everything, but I was grateful for their contribution and intended to pay it forward.
I cried when I called the surgeon’s office and learned the “deposit” would actually be the full payment for the surgeon – the estimated cost to be between $17,000 and $21,000. When I explained my extenuating circumstances, hopeful to pay a lower deposit to secure a surgery date before the end of the year, I learned there was no wiggle room.
That meant I would need to pay $19,000 before I could receive a surgery date.
I asked MomminWithEndo if they would be comfortable donating before I had the date secured and without hesitation, they said yes. I was focused on raising the rest of the deposit by December 1st (only 19 days away) to increase the likelihood that I could schedule my surgery before the end of the year.
My friends at Your Neighbor’s Backyard partnered with me to produce an Arts for Health benefit concert and my hope was that if I raised more funds that I needed for surgery, I would be able to pay it forward to individuals with similar cases through MomminWithEndo and/or EndoBlack to address the very present health inequities. My loved ones were moved by the mission of MomminWithEndo and I was able to raise $10,866.70 toward my total cost of surgery!
One thing that was important to me pre-surgery and during my operation was using the Heal Faster: A Guide of Mind and Body Techniques Program. I came across it in my Arts in Health learning and spoke with the author, Peggy Huddleston, a few years ago when my mom was preparing for surgery. My mom’s surgeon agreed to allow the MP3 to play throughout the surgery and my mom and I believe it helped.
After MomminWithEndo called for the initial payment, my surgery was scheduled for December 26th.
Surgery is a weird thing to look forward to, but I was so hopeful. I felt so seen, supported, and believed.
But I was also so trusting of the moment and the endorsement of confidence I was on the right path. I’d never had surgery of this magnitude so Andrea from MomminWithEndo met with me virtually to provide her experience and insight, and I also spoke with the surgeon’s nurse who talked me through the day.
It felt deeply spiritual as I prepared to release and let go of the years of pain and feeling misunderstood and operate from a place of healing in real time and not letting endometriosis take away more of my life.
I understood that endometriosis manifests for each person in so many different ways, and that this was my first surgery, and there could be more in my future. I was really accepting the peace that comes from prayer, and I was thankful to EndoBlack and MomminWithEndo for making it a mission to support others such as myself. It brought me great peace to have met Andrea in this way. I’m not sure I would have done this if EndoBlack didn’t send me her way and the response really activated the seed of faith I was tending to in practicing asking for help.
The day after Christmas in 2024, I finally had my surgery. My anesthesiologist agreed to share the healing statements and allowed me to listen to meditations during surgery. Recovery was humbling but mostly smooth. Soon after I navigated some cycle-related pain, but I observed what had been alleviated and am so grateful for the healing that happened.
MomminWithEndo 