A cute story about my husband
and my intersex condition,
Complete Androgen Sensitivity Syndrome (CAIS).
Seriously, it's a cute story.
As mentioned in my previous blog posts, The Secret Inside Me, and The Secret Inside Me, Part 2: Feeling Shame, I didn't find out about my AIS condition until I was 35 years old. Although I had my undescended testes removed (gonadectomy/ orchidectomy) when I was 18-years old, back then, I was only told by the doctor, geneticist, and my parents that I was going to have a "radical hysterectomy" or I would die of cancer. (You can read all about that in the two above links.)
All through high school I begged my mother to please take me to a doctor because I was convinced something was wrong because I had not started my period. She told me I was still too young, that I was a virgin, and she did not want me to be examined "down there" until I was 18 years old. I made her promise to come with me to a doctor when I turned 18. A week before high school graduation I made a doctor's appointment with a local OB/GYN, scheduling it a few days after my 18th birthday.
My mom was holding my hand in the examination room. The doctor walked in and introduced himself to us. (I had found him in the phone book.) I put my feet in the stirrups as he instructed and he lubed up his gloved fingers. The first thing he said -- in a surprised manner -- was "What?! There's no cervix! There isn't anything!" My mom and I looked at each other like, "Wha?" He then took his gloves off and said, "Please get dressed and the nurse will lead you into my office. We need to talk." When he left the room my mom began to cry and I was stunned at his words so I just hugged her and told her it would be all right. The first thing he said to us in his office was, "You need to have surgery immediately or you will die of cancer." It was all a blur after that. He said he made an appointment for both my parents to take me to a genetic counselor and gave my mother the information. I was quiet and in shock. My mom cried silently to herself as I drove home. I really don't know how I was able to drive and did not remember driving us home. From the two blog posts mentioned above you will read that my parents were eventually told the truth about my "syndrome" but were advised by the doctors not to tell me. So they didn't. "For [my] own well-being."
After the so-called "hysterectomy" aka "mystery surgery" I suffered deep depression and I took the semester of my first year of college off and never left the house. I burrowed myself at home and turned somewhat agoraphobic and refused to leave home in my depression. I eventually went to community college because I was basically disinterested in school and had to figure out what I wanted to do with my life. I was 19-years old. My doctor had told my parents about dilators to stretch out my blind-ending vagina but at that time (after my surgery) they said I was a virgin and didn't want me dilating "down there." That is what my crotch was referred to back then, "down there."
When I was 20-years old I entered university and it was all kind of a blur but decided to study hard and forget about all the crap about my feeling shame and feeling like something was wrong with me. I told myself to "snap out of it!" Back then I never considered counseling nor did my parents ever suggested anything like that.
Anyway, I met my amazing and loving husband at the university campus. We immediately fell in love. It happened so fast that he proposed to me two weeks after he met me. We hadn't had sex. When he asked me to marry him the first thing that I thought in my head was, "Uh-oh, if I say yes then I have to tell him I can't have kids." I did not know at the time that I was a genetic male or about AIS except that I was unable to have kids.
Of course, I fell in love too, and wondered at how lucky I was that someone would even love me. I immediately said "yes." I did not realize that he would get so excited about marrying me and that all he could talk about was how beautiful our children would be. I was so overwhelmed and terrified. He couldn't wait to get married and have children and start a family. I got scared. He had joined the Marines immediately after high school then he added two more years in the national guard. After that, he began undergraduate school the same year I entered the university. What solidified our relationship was when his father was asking about where my family came from and it turned out my uncle and he had been best friends in the 60's and 70's and had worked together in town and it didn't hurt that they were both veterans who had served in WWII. Small world. It all seemed like "it was meant to be."
As I stated before he proposed to me two weeks after I met him. He kept talking about how great our life would be. He talked about his plans for our life. He was excited about having children and asked me how many I wanted. Yikes! I eventually broke down and cried to him that I couldn't have kids and then showed him my pencil thin surgical scar across my lower abdomen and told him he didn't have to marry me and that we can just be friends. He began tearing up. He was very sweet. We were both sad. I told him to go home and think about what he really wanted and that I couldn't lie to him so I had to tell him the truth of what I knew at the time. (When I play this conversation in my mind, in retrospect, it makes me see it as a dramatic Mexican novela on Telemundo: The tears. The hugs. The sadness. The angst. My self-deprecation. My sacrifice to give up a man I loved because I wanted to be truthful. The stuff of soap operas!) That same night he called me on the phone and told me he didn't care that I could not have children. He couldn't see a life without me and that he loved me so much. He felt in his heart that I was his soul-mate. I felt the same way.
We got married six months later. I was 21 years old and he was 26. We had a beautiful and big wedding in a humble and old little Catholic church and vowed our undying love for better or for worse and all that stuff. Half my home town showed up and we literally had a 3-day wedding celebration.
Fast forward to me at 35-years old. I eventually said enough is enough. All these years of wondering about that surgery when I was 18-years old. My conversation with my sister who is also CAIS who told me all she knew was that we were born with a "syndrome." I eventually got my medical records and learned the name of the syndrome was "Feminizing Testicular Syndrome" and, in the age of the world wide web, finally learned everything about this mysterious syndrome.
That night, at 2 a.m. I had a huge stack of information that I had read through. At the time, some of the information I did not understand in terms of karyotypes, 46XY, and all the other genetic verbage that was making my head spin. However, I kept digging and researching until I finally understood what I was learning about myself. My medical records were pretty specific since I was constantly referred to as "the affected male."
In the wee hours afterward I cried. I had to tell my husband, who was asleep in the bedroom on his third dream. Before he had gone to bed he had asked me to make him a great breakfast in the morning and that he wanted pancakes. I promised, then kept on frantically researching on my brand new desktop computer. Anyway, I ran into the bedroom in tears with a stack of paperwork in my hands and tearfully woke him up. He jumped out of bed scared that something had happened. I blurted out the name of the syndrome and that I was "A genetic male!" And then proceeded to ask him if he was going to divorce me. My histrionics were very dramatic. Like a soap opera: the streaming tears, the pleading eyes, the hand wringing, the shaking and sobbing, etc., all on my part.
He hugged me tight and kissed me. He then wiped the tears from my face and said I was "stuck with [him]." He said he loved me so much that NOTHING (he stressed this emphatically) was ever going to keep us apart. "Not even [my] genetics?" He said, "Fuck that! You think I care about any of that after being married this long?" By then we had been married 14 years. I was relieved and wanted to hug and kiss him all the rest of the wee hours. But then he said, "Now leave me alone to finish my dreams and, DON'T FORGET, you promised to make me pancakes in the morning!"
See, I told you this was a cute story. All the fears were inside of ME. My wonderful husband had nor has he had any issues about my genetics. All the years of feeling ashamed and sad not knowing the real truth about myself was the worst thing, even moreso than the a facts about my AIS.
To date, we have been married for 31 years and he doesn't have any plans yet to trade me for someone else. He's a keeper. I am truly blessed!
Thank you for your support and advocacy!
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