In December of last year, when I went to Mexico City to visit my great-aunt Tia Alicia and her family, a photo album opened my eyes to the reality of my family’s genetics: lupus
My great-aunt Tia Alicia, a woman who might pass for five feet tall, is a force of life and the very heart of the family. An 80-year-old powerhouse, she is in charge of raising her two minor grandchildren and two great-grandchildren who are not yet even walking. Born on a ranchito in the state of Mexico, she would often visit the ranchito during the sixties on the chicken bus with my mom in one arm and a swaddled piglet in the other.
Her daughter Ana, her surprise baby, is only older than me by 10 years. A holder of a Bachelor of Business and fluent in the language of Chilango (the language of the masses in Mexico City), my cousin lives by the dicho (saying) of her mother: Al que madruga, Dios le ayuda. (The early bird gets the worm) A small business owner, bilingual and the guardian of the house since my great-uncle died, Ana almost always ends up in the hospital every year: She was born a hemophiliac. Like clock-work, every once she stabilizes, she returns to the rush that is life as usual in Mexico City.
There is no protection for people with health problems and/or disabilities in Mexico.
One day during my visit, my knees hurt profoundly. Ana hugged me and gave me an Advil. Next, she sat down next to me with a dusty old photo album showing relatives and noting how they died. Of course, for someone who is not of Mexican blood, an album full of death might seem a bit macabre. Even I have to admit Mexican culture loves death; it loves death as it is a joke, dressed up, documented or written down. Death is simply sacred to Mexicans. During the time period of my Tia Alicia, death was a destination, not a place to avoid. ¡Al fin que para morir nacimos pues! (Alas when we are born we are destined to die!)
Page after page of the photo album showed distant cousins, little over 16 years of age, dead after giving birth or graduating from high school. Under the photos, light print appeared. “Luz died with a rash on the face, a high fever and swollen joints.” “Pancha died on Tuesday with a pink rash on the face and a high fever. The baby also died. ”
To me, the photos shouted lupus or something very similar, and made me realize that Latinos have to wake up to the fact that lupus hits us three times more than non-Latinos.
Lupus can be disabling, life-altering and if not attended to, deadly.
If we do not start to take notice and to stand up to the disease, we will lose lives: lives like the singer Selena Gomez, lives like Luz and Panchita.
Thanks to God, we are living in an age with significant medical advances. If we take notice, we can do this.