I Will Have New Scars
Black, Queer, and Diagnosed with Advanced Endo after 20 years. How Grief, Joy, Pain and Gratitude can all Exist at the Same Time.
It is Monday in Brooklyn and I am watching the sun pour through the clouds to melt the snow that fell softly this weekend. It is the first day of Pisces season. My season. I am yearning for the spring. To see change and witness growth. To watch flowers and green bloom in my front yard garden and drink orange wine while I plant new things and tend to the baby cherry blossom that we planted last summer. I have so much on my mind after a whirlwind of a week. A week filled with immense pain, joy, grief and gratitude.
Yes, these things can all exist at one time. I was recently diagnosed with stage four endometriosis and informed that I was misdiagnosed with IBS. It has been a very long road paved with medical racism and gaslighting, homophobia, misdiagnosis, and capitalism. My story is unfortunately not unique.
I have grown accustomed to being sent out of doctors offices with no hope or resolutions for such a long time. If you are a BIPOC, non cis man, trans or queer YKTFV!
A few weeks ago at a doctors appointment, it took all but ten mins for a doctor to take a look at a large cyst just taking up all of this space on top of my right ovary to say “ this is a large endometrioma” aka chocolate cyst. Wow. My symptoms were finally being validated. But wow… the grief. It began immediately. There were/are tears. There was/is anger. I got angry about all of the time, energy and resources that I have put into treating what I thought was IBS, and angrily threw out (hopefully) my last ever box of gluten free fucking pasta that I will ever purchase for myself.
I have been told recently by medical proffesionals that it takes an average of 10 to 11 years to diagnose endo. And likely double this amount of time to diagnose black folks with uteruses. It has been 20 years for me.
It feels important to note during Black History Month that only 5% of people diagnosed with endometriosis are black. Not because we do not have Endo. But because of medical racism. Because we are not believed, or shown and given access to the care that we need.
I am scheduled for a life changing surgery on Feb 26th. Today is the first day of the last week of my life in this version of my body. There will be evidence. Proof of what happened here. I will have new scars across my belly to wonder at and/or be angry about. Universe, God and ancestors willing, my future child will notice them, marvel at them and feel loved by knowing what it took to design a body healthy enough to carry them. Even though no doctor before a week ago has ever asked if I wanted to give birth. It is painful to process this because there are only a few things in my life that feel as important to me as one day giving birth to a child. I wonder how assumptions about my gender expression and visible queerness have added years to my delayed diagnosis.
But yes, there will be evidence and reminders of this long battle to add to the collection of half healed wounds already shining across my abdomen from surgery done after an appendix rupture when I was 16. This also happened because of neglect at a hospital in their waiting room. They did not believe me and I could have died.
Lately, I have been processing my grief with those who have witnessed and been impacted by my battle with this disease over the years.
My mom told me yesterday that the day that my appendix ruptured at our local hospital, I was in a deep state of hallucination. I was talking out loud to my favorite Aunt Mary who passed away in a tragic car accident a few years earlier. The doctor told my mom that my hallucinations were a symptom of the rupture.
But Aunt Mary was one of my mothers. Our bond was sacred. It began long before this life. Love so transformational hardwires itself into your DNA forever. It is the kind of love that I hope to give to the people in my world and also learn to give to myself.
Aunt Mary always took care of me on sick days. Any day that I was on my period, was a sick day. Vomiting, blackouts, and heavy bleeding at school got me in trouble because I often needed long bathroom breaks. Sometimes a teacher would show mercy and finally just send me to the nurse who would send me home from school. This continued to be a problem in college and any job that I have ever had. When you think about it, we are often punished and/or penalized for being ill. Even as a "model student” with straight A’s and a great employee, my grades and jobs were constantly threatened for needing to step away to care for myself.
In hindsight, I do not think I was hallucinating in the ER at 16 after all. I think that my Aunt Mary was doing what she had always done. She was coaxing me through a hard moment. Taking care of me the way that she always has. Loving me in that otherworldly, transformative way.
My first period came one day on my way home from basketball practice.
I was so overwhelmed by discomfort and embarassment that I kept it a secret for a day. My little brother who was my very first friend, heard me crying in the bathroom and walked in to check on me. My mom joined us and soothed the both of us over by explaining that this was totally normal. (blood yes, level 12 pain and vomiting-nah) She sent my brother on a special errand to help me and he was happy to.
In typical Pisces fashion, I have cried three times while writing this. Last week my surgeon’s office called. They were worried about my latest escalation of symptoms and imaging and it was decided that we should move my surgery up ASAP. In the same breath she let me know that my insurance informed her that they would not cover it. Apparently this is a common occurrence.
I was puzzled and devastated. I quickly realized that I would not be able to make this surgery happen without community. With a ton of encouragement from my village, a Gofundme was launched. I was afraid to share. To be seen needing. To process such new, private information so publicly. But I shared it. My partners shared it. My community shared it. Strangers who relate shared it. And what has become increasingly clear for me is that I am LOVED. SEEN.
I AM NOT ALONE.
I have almost met my goal and I am overwhelmed with gratitude. I am fittingly on my period as we speak and have been at a level ten pain for a few days in a row without a consistent way to manage my pain. But the joy has pushed me through. The love has kept me calm. Transformed me in ways that are reminiscent of the kind of love that I used to get from my Aunt Mary.
Community has saved me this week. Been like medicine. Been like a cure.
I do not have enough words or days to express what this means to me.
But I can not wait for my new life.
Thank you to all, who have and continue to make this possible.
For those who are here and have the capacity, please consider sharing or contributing to my Gofundme to help me reach my goal <3 Words of encouragement are also very, very welcomed.
Love,
T <3