EMMELINE Aglipay-Villar, congresswoman and gender equality and labor rights advocate, walked through the door of the coffee shop, in full bloom, her slender frame occupying the seat across from me. We used to meet frequently at her house in Pasig City whenever I needed to consult my Nacionalista partymate Mark Villar about the 2016 senatorial race.
That morning, Em, as friends call her, impressed me as a woman with a mission. She has lupus, a lifelong disease wherein the individual’s defense system attacks various organs of the body. Her mission is to help people with lupus come to terms with managing the disease.
I asked her to describe lupus in non-medical terms. Em said: “Imagine if there were very bad people in your community and you ask the police to come in but the police cannot distinguish the bad people from the good people. The police end up attacking places where there are no bad people to be found. It’s something like that because when you have lupus, your immune system which is supposed to defend you, attacks your organs.”
Despite decades of research, the exact cause of lupus has yet to be discovered. It is predominantly found in women between the childbearing ages of 15 and 44. The most distinctive sign of lupus – a facial rash that resembles the wings of a butterfly unfolding across both cheeks – occurs in many but not all cases of lupus. While there’s no cure for lupus, medical treatments are available to control its symptoms.
“Lupus is also called ‘the great imitator’ because it’s easy to attribute the symptoms to other ailments. I thought the stiffness in my hands and my ankles were due to my exercise routines. I went to a physical therapist thinking that the pain in my joints were nothing really serious and would just go away.”
In June 2007, the pain was so bad that she had to go to the emergency room of Makati Medical Center, which was close to the law firm where she worked. It was not a good time for Em. Her party-list group, DIWA, had lost the mid-term elections and she was emotionally drained from combining a tough nationwide campaign with her professional obligations as a lawyer to the firm and its clients.
“My blood counts were down, my kidney was badly damaged, and I had to be confined. That was the first time that I heard about lupus. I accepted the results and simply asked, ‘so what do I need to do?’ My first doctor told me not to leave the house, and if you really do need to leave the house, you must wear a mask. I changed doctors. I can’t just be at home because I wanted to do so many things.”
Then finally, in 2010, DIWA party-list won and Representative Emmeline Aglipay found herself immersed in work, dealing with constituents, and loving it. She observed that Congress was the last place to find the right guy for her. “If I wanted to get married, I thought, I can’t find that right guy in Congress.”
Las Piñas Representative Mark Villar asked Em out for lunch and they had occasional group dates from time to time. “I was pushing him away. I told him that I had lupus and maybe he should go out with someone else.” She thought he was superficial and won’t be around much once her rashes, and hair loss, and frequent visits to the hospital became evident.
In this instance, it was good to be wrong. According to Em, Mark is very deliberate and thoughtful in making decisions. He is very careful when he commits to something or someone because he wants to be very sure of his capacity to deliver.
When Em lost her hair, Mark lovingly teased her about being bald. When she had flare-ups that caused enormous pain, Mark suggested alternative treatments after reading up and learning more about lupus. Way before he proposed marriage, Mark slept in the hospital rooms whenever Em had to be confined. Leaving was not in his vocabulary.
There was a time early on in their relationship when Em had to tell Mark that her doctor advised her against having children. “I can’t have children until I achieve remission.” He stayed, and in 2014, they got married, and soon after, the miracle of a beautiful daughter named Emma Therese Aglipay-Villar came into being.
I asked the congresswoman what that felt like, to carry a child to full term and give birth despite the odds. “I have no words to explain how wonderful it felt. It was like all the good things that ever happened in my entire life – my happiest birthdays, the most loving moments – even if I add all those up, what I felt was extremely more than that. It was the best moment and feeling in my life to finally fulfill that dream of having a child.”
As one of the founders of Hope for Lupus Foundation (www.hopeforlupus.org.ph), Em’s mission is to help people with lupus get the moral support and medical assistance that they need not only to survive, but also to thrive as productive human beings.
“I don’t want people to die of lupus because they were misdiagnosed or could not afford to get the right treatment. I don’t want them to go through the initial stages of denial and fear without access to a support group. This is why I continue to share my story. We can get through lupus together.”
Aside from her advocacy and her work in Congress, Em is also pursuing a master’s degree in law. I told her how amazed I was at her positive attitude in life.
Em smiled, and said: “The trick is to be happy.”
I fully agree.
Manila Times Link: The story of Em & Mark: When love conquers all