When God Designed Our Ujian and Rezeki According to Our Capacity and Capability
Right now, last 2 weeks, I had an anxiety attack in the cab and at the airport. I suddenly panicked - not by the thought of traveling overseas alone, cause it wasn't my first time doing so - but by the thought of speaking in front of so many strangers in a foreign country about an issue that is so personal to me. I pulled myself together, though. I told myself I need to complete this amanah. And alhamdulillah, I did it. At the end of the conference, I took an hour of break outside the hospital cause it was so overwhelming- in a positive way. Breathed in, breathed out. Repeat.
Let me say this for the first time ever: 18 years ago when gynaecologists told me that I was born without uterus and vagina, it felt like the death of all babies I imagined I would have. All at once. I can't say I was sad because I didn't even understand what the diagnosis really meant. I was too young. But I can say that I felt isolated and confused. I was already confused by the fact that I had always been quite maternal for a teenage girl - with baby names book as my favourite read, writing stories of fictional characters I 'gave birth' to - then upon diagnosis, even more confused knowing that I'll never have monthly menses and biological children. That I am 1 in 5,000. That I may have abnormalities in my kidneys, skeletal, heart, and hearing too.
Fast forward: On 29th of November 2019 at the Royal Children's Hospital in Australia, I spoke out. The auditorium was packed with health care professionals and MRKH communities from various parts of the world. I shared about the lifelong challenges and cultural stigma faced by MRKH women in Malaysia, Indonesia, and Singapore. I shared about how our support group MRKH Malaysia is moving towards empowering girls with DSDs, advocating dilation therapy, educating families, and raising public awareness, while our partner the UKMMC's O&G team is working towards making uterine transplant a reality, and training for better vaginoplasty. I feel very humbled, honoured, and privileged to have the opportunity of being the voice of the voiceless- which is the majority MRKH women in Southeast Asia who are hiding and staying anonymous for all sorts of private reasons.
If I were to name my greatest supporter, I would name Prof Ani Amelia Zainuddin from UKMMC. She has been my biggest cheerleader and my 'partner-in-crime'. My journey as an MRKH advocate would be incomplete without her and her team. Despite her busy schedule, she has accompanied me at numerous events and in media coverage throughout my campaign of creating awareness in Malaysia. She even brought her nurses and gynaecologists to this global conference in Melbourne to support me! I was searching for sponsorship and her support letter made me teary.
I couldn't have done what I did without her and her team believing in me even when I myself didn't.
I couldn't have represented my country if it wasn't for the pecuniary support from friends of MRKH Malaysia, Malaysian Rare Disorders Society (MRDS), Awareness on Suicide Malaysia (AWAS Malaysia), as well as the Beautifulyou MRKH Foundation in U.S. who helped without me asking.
I couldn't have spoken at the conference if it wasn't for the kind and thoughtful invitation from Global MRKH and Sisters For Love MRKH Foundation.
I couldn't have completed this amanah without my husband's love and trust, my parents' blessings, and the validation by my sister-in-advocacy, Kak Alia.
Thank you, everyone. Thank you so very much.
It was a solo ride. I was by myself and I didn't have a team of photographer and videographer to document my journey or anything. But I hope I did good. I know it was nothing perfect. I am still learning. How to speak. How to carry myself.
MRKH advocacy to me is never just about MRKH Syndrome alone. It is about all DSDs in general (differences / disorders in sexual development). It is about social and psychological well-being. I am 35 this year. I am well aware that what I do today will not change my medical condition. Still, my aim is for the next generation of Malaysian MRKH girls to benefit from my advocacy work. Who knows- in 10 to 20 years time, there will be a first Malaysian MRKH woman giving birth out of a uterus donated to her...? Call me a dreamer, but looking at this photo, I believe nothing is impossible. God-willing.
Wani Ardy MRKH Malaysia "Challenging perceptions, changing lives."
