Family photo of the author with his mother. Photo courtesy of author.

Finding life through loss

My mother sat on the side of the bed. Her two bulging eyes and slender face made lean by eighteen years of untreated hyperthyroidism.

“They ain’t payin’ for nothin’.”

The look on her face was both indignant and frustrated. She had had enough. She was tired of the tests, the ultrasounds, MRIs, the poking and prodding. I attempted to assume the role of parent by assuring her that everything would be fine. But everything was not fine.

In the last months of her life, I was my mother’s strongest advocate. Given that she was on Medicare and did not have secondary insurance to cover her stay at the nursing home, she was only entitled to twenty days of paid care. Anything after that would either be covered by her or her insurance. My mother lived on $22,000 a year, and after almost $800 in rent a month, she didn’t have much to live on or save—such is the situation for many elderly New Yorkers. If she were to stay at the nursing home past the twenty days allotted, she would have to pay $164 a day. I submitted all of the required documentation for Medicaid to offer my mom options. Despite my willingness to work with the system, my mom wanted to go home. There was no stopping her. As the time drew closer for her to be discharged, her health started to decline.

The look on her face was both indignant and frustrated. She had had enough. She was tired of the tests, the ultrasounds, MRIs, the poking and prodding.

Mother attends author’s sister’s graduation. Photo courtesy of author.

A few weeks earlier, I had arrived home—which always comes with its share of challenges. I have often felt that the walls of a home are living in that they hold good and bad memories, joy, sorrow and longing—my mother’s apartment looked lifeless when I arrived. White walls were hung with aging framed pictures of plants or generic African inspired art. Beautiful but dirty wooden floors were covered with cheap linoleum. There was also plumbing that didn’t work. Electronics that functioned at one time were now essentially placeholders for furniture that was broken during arguments and other violent acts.

On the bare mattress where my mother slept were yellow stains from urine and other bodily fluids, but I also noticed blood. I asked her where the blood was coming from and she asked me, “Are you ready to see this?” She bared her left breast where an ulcerated lesion seeped blood. The lesion was flat and about the size of a burger patty with an eerie resemblance to uncooked meat.

I asked her,

“How long have you had this?”
“Why didn’t you see a doctor?”
“Why didn’t you do anything?”

Her response was, “I ain’t gonna let them cut on me! You think I don’t know what I have? I ain’t gonna die on no goddamn slab!” Her reaction might seem extreme to folks who don’t know her but to me it was all too familiar. My mom was prone to anxiety and paranoia. As a child, I grew accustomed to her endless accusations—people were trying to kill my family or someone was listening to our phone conversations and coming into our apartment when we were not home. However, when it came to her distrust of the medical system, my mother had good reason.

When I was born, the doctors wanted to remove my testes and create a vagina. They told my mother that I was born with an intersex trait known as Androgen Insensitivity Syndrome. This meant that my body only partially masculinized inside of the womb. As a result, I was born with undescended testes and ambiguous genitalia, but assigned female at birth. Doctors wanted to keep me in the hospital for observation, but my mom declined. When she brought me home, the Endocrinology Department at Columbia-Presbyterian called her for weeks pressuring her to bring me back for surgery. She declined. Unwilling to subject me to surgery without my consent, it was her vigilance that spared me some of the many horrors that intersex people have had to endure.

My mother saved me for thirteen years. She protected me from genital mutilation at the hands of misguided surgeons. When I talk about genital mutilation I am referring to such things as repeated surgeries on a boy whose urethra is located at the base of his penis to make him pee standing up, or on a girl whose clitoris is considered “too big” or on children like me who are born with “ambiguous genitals” that shock, intrigue, and disgust doctors who are determined to make sexual anatomy align with societal gender roles. My mother saved me from this for thirteen years until they told her the lie that my testes were cancerous and had to be removed. In the weeks following the surgery, we had a consultation with a pediatric urologist at the hospital. He described what my anatomy looked like and said that he would create a cavity inside of me so that I would be able to have receptive vaginal sex with my future husband. The way he described the surgery boggled my 14-year old mind. Witnessing my discomfort, my mom asked me whether I wanted to continue with this and I told her no. She respected my decision and refused genital surgery. That was my first lesson about body autonomy—an inherent right for intersex children and adults.

“Your mother fought to protect you when you couldn’t protect yourself and you did the same for her.”


Family photo of the author’s mother and uncle. Photo courtesy of author.

Years ago, when my mom thought that she would die from breast cancer, she sent me my uncles’ medical records. She had known about this intersex trait in her family for a long time, but was ashamed to talk about it and felt guilty about having intersex children. My pride in being intersex and publicly sharing my story gave her the strength to open up to me about our family’s history. The records came in a priority mail envelope. I opened it to find some documents dating back to November 4, 1963 and smelling of my uncle’s cologne. The documents contained a conversation between two doctors. Dr. Koonce contacted Dr. Abrams after my oldest cousin was born with Androgen Insensitivity Syndrome (AIS). Dr. Koonce needed guidance concerning how to assign her gender given that she was born with what is considered “ambiguous genitalia.” Dr. Abrams recounted the initial meeting of my grandmother and her three children:

In June 1942, Sarah Robinson brought two of her children to me for examination. They were both dressed as little girls and examination revealed pseudohermaphroditism. At the time she stated that she had another little girl who was somewhat peculiar also. In a few days she brought the third child to me, which proved to have a similar condition, but to a less exaggerated degree. I admitted all three to the hospital on several different occasions trying to prove hermaphroditism…. With fairly conclusive proof that there were no definite female sexual organs, I proceeded to close the pseudo vaginas and started reconstructing the residual penis with fair success. The older one of these children, Bobby Jean, was drowned a few years after the original procedures. He was seven years of age when first seen.

What the doctor didn’t talk about was the scars that would be left on my uncles’ chests when they grew breasts during puberty. He didn’t care about the silence, shame, and stigma that plagued my uncles and the rest of my family who have AIS. He didn’t discuss the questions or confusion that my uncles felt about their bodies. He didn’t know about the beating my mom got when she asked my Nana why her brother sat down to pee. He did not care that as a colored patient one of my uncles was forced to receive medical care on the porch of the hospital since the medical facilities were segregated. Nor did he seem to puzzle over Uncle Bobby’s death. To this day, I don’t understand how Bobby Jean—who was a lifeguard and expert swimmer—drowned but my mother always asserted that his friends held him down in the water because of how he was born.

That the autonomy that exists in knowing your body belongs to you alone is something Bobby Jean never got to experience. I wonder if he would have chosen for himself the gender doctors assigned to him or if he would have preferred to follow the course designed by his own body.

When I decided to transition, I did so because I wanted to continue what my body was already doing in puberty before my testes were removed. However, synthetic testosterone is not the same as what my testes would have produced. Also, because of my specific trait, my voice didn’t drop and I didn’t get the facial hair that my other brothers of trans experience raved about. People either saw me as a young man, a gay man, or a lesbian woman. Being seen as non-binary defeated the whole purpose of transitioning, I felt. My sense of safety depended on whether people viewed me as a dude or a masculine woman. I was scared. Although I was living in a place viewed as a progressive bubble, I was still lonely. At some point I contemplated whether I should continue living. I couldn’t deal. But I thought to myself, if I committed suicide no one would know my story. No one would know that I existed as a Black intersex person. I had to live in order to tell my story.

In the last few weeks of her life, I desperately wanted to give my mother that kind of will—the dogged determination to continue fighting—but I guess when people are ready to die there is something else that takes hold. In a way, that’s another kind of autonomy.

My relationship with my mother was complicated and complex. However, she is the one who taught me about unconditional love.

When I picked my mother up from the nursing home, I could hear the wheezing and crackling in her lungs from pneumonia. I saw her go from moving around and talking to lying in the bed hooked up to an oxygen tank within two days. She told me, “Sean, they want to put me back in the hospital.” When I asked why she didn’t want to get checked out, she did not respond. Her face was resolved. Our journey together was coming full circle.

Our last hours together were separate. She stayed in her room the whole night and did not come out. She requested that I put on Family Radio, a Christian station that she listened to for most of her life. Being once Catholic, I was reminded of how Jesus felt the end coming and prayed the night before he was crucified.

On the morning of January 10, 2017 my mom gave up her life force. Finding her lying in the same bed that she refused to leave a month ago, her body perfectly still, I sobbed and tried to bring her back to life. I frantically called my sister who urged me to resuscitate her by breathing into her lungs but nothing worked. She was gone.

Author in front of grandmother’s apartment. Photo courtesy of author.

My relationship with my mother was complicated and complex. However, she is the one who taught me about unconditional love. At times, she could be incredibly selfish and self-absorbed, especially when she felt that she was fighting for her survival. Her words could cut down to the white meat. I learned to track my mother’s rage as a child. I saw her through years of alcohol and crack addiction, cleaning up her vomit and helping her to sober up. She raised a codependent child that went on to take care of and love people who loved themselves. There were many times in our relationship that I felt lonely and unseen but she was the only mother I knew. She was generous with whatever resources she had. When in public, her beauty and sharp sense of humor made her the life of the party. She was a mother who would literally give you the clothes off her back. She instilled in me that no one should ever go hungry. I recognize that there were parts of my relationship with her that were healing and traumatizing. My work these days is to heal from that trauma.

After she passed away, I wondered what was the purpose in being there during what turned out to be her final days on earth. A friend shared, “Your mother fought to protect you when you couldn’t protect yourself and you did the same for her.”

Although she has passed, I feel her spirit moving in a bigger way in my life. She is in my dreams, in the sun, in the wind and rain. Her love now feels so much larger than the limitations she had on this earth, and this love gives me life.

  • About

    Sean Saifa Wall is an intersex activist, collage artist, and public health researcher based in Atlanta. He is the former board president of InterAct, an intersex youth advocacy organization, and is now an advisor for the Astraea Intersex Fund for Human Rights. Currently, he is working on a documentary project about his father’s incarceration entitled, “Letters to an Unborn Son.”