In my my hands I hold the results… For Miss SA 2016! Haha Jokes. I wish. Seriously though, in my hands, right now, I hold the results. My pathology report. After a number of doctor visits, blood tests, a positive test result for testosterone (a hormone typically found in males), and finally a karyotype blood test to determine my sex chromosomes. The doctor called me in with my test results, and they read as follows.
Patient: Lehlogonolo L Khumalo (That’s my Pedi name by the way. Although it should actually be Lehlohonolo. People always get it wrong, anyway…)
ID Num: [insert 13 digits here]
Requested: Karyotyping blood – CYTOGENETICS
—-REIPHERAL BLOOD CHROMOSOME ANALYSIS REPORT—-
Cytogenetic analysis of cultured peripheral blood metaphases revealed a modal number of 46 and a 46,XY karyotype in 15 cells analysed.
No gross structural abnormality was detected in Giemsa – banded metaphases.
The above finding is characteristic of a NORMAL MALE chromosome pattern.
[Insert some irrelevant information]
**End Of Report**
The doctor then went onto explain what the results implied. I knew EXACTLY what they meant, but it just didn’t make sense. Notice how my sex was noted as “F” for female but my karyotype is “characteristic of a NORMAL MALE chromosome pattern”. So I knew exactly what it meant. I was somewhat prepared for it, the doctor mentioned AIS in passing when he tested me for testosterone. So I kinda had an idea, but just because you are prepared for something doesn’t mean it’ll hurt less when it actually happens. You just know its coming, whatever it is, you know that its coming but you never knew that it’s going to hurt this bad.
All of this happened on an early November Sunday morning. After that, my official diagnosis, I then left the doctor’s room and went to church. “There’s no reason you can’t lead a normal life” he said. So I went about my normal business and church on a Sunday was normal business. It was a good service. Night came and went. Then one of my worst days in my entire existence dawned.
Forget blue Monday,this was a black one. Internally I’m having the toughest time conversing with God and myself.
I’m trying so hard to make sense of it all and hold it together like the buttons on a blesser’s shirt. But I’m sure like the buttons will tell you, it’s hard. It’s strenuous work trying to hold it together when all you want to do is lie on the floor, cry like a two year old , snorty, puffy eyed, with shortness of breath, kicking and screaming. But I couldn’t. It was almost exam time and I had school. The biggest question I had was if this made me male or female, because in my little mind I thought there could only be two. While struggling with all of this, it was as if the universe was secretly conspiring against me or giving me the validation I needed. That day I received so many “You look so pretty” compliments and each one hurt more than the previous one because girls are pretty and boys are handsome, but I didn’t know which one I was. I grieved for a short while after the first doctor’s visit when I found out about not having internal female organs, but it wasn’t until the official diagnosis that I ACTUALLY started grieving.
“It must be a bad dream, this can’t be happening, not me” I thought. I remember researching on AIS that Monday at the Merensky Library and being so paranoid that someone might read what’s on the computer screen, put two and two together and see me for what I really am. As I’m reading and identifying myself in all the signs and symptoms in the medical cases, I still can’t wrap my mind around it all. How does it even happen? But it did, and it still does, I’m living proof. Genetic anomalies, and I say anomalies only because they occur in lower frequencies relative to the greater population. Point is, genetic anomalies are so believable and fascinating when they are case studies in an old textbook with black and white photos of naked patients with black bars over their eyes. However when it hits home you can’t help but think there must be some kind of mistake, it can’t be me. I mean, you never think you’d actually end up being the patient in the case study with black bar over your eyes. I couldn’t believe it. But there it was written in black and white. It wasn’t a mistake. I am an XY female. No mistake at all. I’m a firm believer in God and I also believe He created each and every one of us in His image and I now know that I wasn’t a mistake, a reject, or a factory fault. He knew exactly what He was doing when He made me, and that’s a fact.
Growing up in church I don’t think I’ve ever heard a sermon where the pastor ever said she or he was ever angry at God. Subconsciously that affected my relationship and especially my feelings towards God. I never believed I could be angry at Him, it felt unholy. Though that didn’t change the fact that I still felt anger. He was supposed to be in control, of which He still is. But in that moment it didn’t feel like He was. I got angry that He’d let people get pregnant and they would end up abandoning or aborting their babies. I thought I could have done a better job when I eventually became a parent, so why couldn’t this have happened to those people. I was taught in church that sex and children were reserved for only after marriage, now imagine my anger being a Christian girl when I saw an unmarried woman waddling along heavily pregnant. Oh, and then if I knew the woman or she was a teenager from my hood from a minimum wage household where her family still lived in the grandparent’s four roomed house… That was the worst! I questioned how God could let her be able to have and a child and then give me this condition.
How could He let this happen? But more importantly, how could He let it happen to ME? This ME we’re talking about (see how self-righteous one can get). I quickly realized that “Hunny, as special as you think you may be, God is no respecter of persons, so nothing you could ever do would exempt you from life”. This was life, my life. On the other hand though I’m kind of chuffed because I know God only hands us a life He knows we’ll be able to handle, and He knew I could handle THIS. So “my brethren, count it all joy when you fall into various trials, knowing that the testing of your faith produces patience. But let patience have its perfect work, that you may be perfect and complete, lacking nothing. If any of you lacks wisdom, let him ask of God, who gives to all liberally and without reproach, and it will be given to him. But let him ask in faith, with no doubting, for he who doubts is like a wave of the sea driven and tossed by the wind.”
So I got over myself, my sense of entitlement based on being a “good” person, but most importantly my anger towards God. I accepted that a human’s choice to have or not have children in whatever setting has nothing to do with me. That a human is well within their right to keep or terminate a pregnancy, and I don’t have to resent another human being for living their life the way they deem fit, despite whatever I may believe in. It was only then, after letting go of that anger, that I could move on. Now I’m even able to be genuinely happy for my unmarried friend with a little human in her belly and/or even talk to a teenage mother without resentment or judgement. And that is one of the most freeing things I did for myself, because one, life doesn’t revolve around me and two, people are allowed to live THEIR lives the way THEY see best. Despite what I believe to be true and right.
While going through anger and getting over it, I then started to bargain with God…
Let me first say that I have the utmost respect and love for everyone going through whatever challenge that they’re facing and I now realize there is no better or worse situation, but that all our challenges are unique and just as serious as the next. That being said, I actually thought I would be better off having cancer, at least there’s chemotherapy and I would be female. Physically and genetically. I looked at Giuliana Rancic and her journey with breast cancer and wanting to have a child traditionally. And I thought if I could choose between my life and her life, I would choose hers. At least I’d be genetically female, at least I would be able to produce eggs. At least I could give my future human being a part of me, he would give me his and we could have our “own” little human. Though it was when Giuliana learned of her unlikelihood of conceiving and bearing children, that I felt with her. In a way I know her pain. And from that pain I learned to be sensitive about asking couples or friends on when they’re having kids, because THAT may be a loaded question and you may get an answer you never bargained for. And another thing that I learned is that the grass will always appear greener on the other side, but what I could do is nurture my side of the grass to its most greener and become content with my little patch and its shade of green.
In the end, no amount of bargaining could change my situation. A part of me loved, and still does love the fact that I don’t get to go on a period every month, but there was a time where I was prepared to take whatever came with menstruating monthly, if it meant I could be a “normal female”. But all I could do was to accept it, and deal with it. And the closer I got to accepting the card I was dealt with, I fell into the next stage…
Reading on AIS, you’ll read that areas of management include sex assignment, genitoplasty, gonadectomy (which both need should NOT be done without the patient’s consent), hormone replacement therapy, genetic counseling, and psychological counseling.
The hardest part for me in this whole process was the psychological implication, (the others are topics for another post). I had held in all of these thoughts and emotions for so long that one night I couldn’t hold it in anymore. That shirt button holding on for dear life, gave in and let go. I had my breakdown. Something foreign yet so real. I had never had a breakdown before, so this was very strange, but I saw myself not being myself. It was as if I watched someone else go through this strange emotional experience and I had no control. I now even remember what pushed me over the edge. I somehow lost my phone’s PIN code, blocked it and when I looked for the SIM card packet with the PUK number and I couldn’t find it. And then I lost it, emotionally that is.
After a sombre trip to the ER (hoping I would get admitted to run away from it all, which didn’t happen) and then sessions with a clinical psychologist and the varsity psychologist. I was now dealing. Deep down, I think my soul was looking for that “thing “that would unlock this other thing, that I didn’t even know what it was, me. It was me. I had lost me, and this whole process was the key. I had to go through every room, phase, and look every in every nook and cranny, and go through every feeling and motion, to find what it was that I was looking for without even knowing it.Which then brought to me to the next room, phase. Acceptance. (Tisk tisk, I really dislike it, no I don’t, when I get all deep and metaphorical and stuff)
This is where I now find myself. Defining who I am on my own terms, because even the tried and tested science failed to define me. This is where I find myself, learning to become who I deserve. Not because of who or what said, but because of me and God says so. He did not give me a spirit of fear, but of power and of a sound mind. So I had to refuse to live in the confines of fear.
Coming out to talk about this was me saying “Yes, I may be different from the next “girl” but there is nothing wrong with me and I have absolutely NOTHING to be ashamed of, because at times I felt like there was. And know darling child, know that whatever you may be going through you don’t have to suffer in silence. I hope you one day realize there’s more to life than living in fear.” But also keeping something like this to yourself, close family and friends doesn’t mean you’re living in fear, it just means we process differently. Just don’t do it out of fear. And after living for almost for four years in fear of someone finding this out, I found this is working better for me. And it’s okay.
Now quoting my favourite songs in my posts looks like is going to become a habit. And being honest I like it. Gladys Knight sings “If you get the choice to sit it out or dance, I hope you dance…” But what I really want to share with you is some of Ben Howard’s words from “The Fear” so here goes…
“Oh, my, my, cold-hearted child, tell me how you feel
Just a grain in the morning air, dark shadow on the hill
Oh, my, my, cold-hearted child, tell me where it all falls
All this apathy you feel will make a fool of us all
Oh, I’ve been worryin’ that my time is a little unclear
I’ve been worryin’ that I’m losing the ones I hold dear
I’ve been worryin’ that we all live our lives in the confines of fear
Oh, I will become what I deserve
Oh, I will become what I deserve
Oh, I will become what I deserve
Oh, I will become what I deserve”
With that being said or sung let me add true beauty is being confident in WHO YOU ARE, flaws and all, and what you may see as your flaws someone may see as your beauty.
I hope you become what you deserve and stop living in the confines of fear. Thanks for reading my two thousand, five hundred and twenty-five words piece.
Photo by: Merwelene van der Merwe
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