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SAN BENITO – She loved Nicholas Sparks and his love stories.
She loved Carrie Underwood, her dog Mei-Ling and dancing.
Most of all, Janet Mata loved the very idea of love and life.
Janet, who died Jan. 27, faced life with bold courage and smiles even as the constant agony of an incurable illness followed her every moment.
“She gave you hope, she gave you life, she gave you advice, she guided me, she protected me,” said a visibly shaken Juan Carlos Mata as he spoke of her death.
The two shared a close bond and gave each other support and validation; he never treated her like she had a disability, and when he came out to her as a gay man to her she embraced him without hesitation. They backed each other through shared and separate struggles. In the wake of her sudden death, there’s an emptiness that weighs heavily on Juan Carlos, 26.
“I feel empty, lost, shocked,” he said, sitting at a table where a small shrine bore witness to her life and legacy and inspiration. A rosary wrapped around candles flickering to light up the photos of Janet and her beaming face.
Janet lived her entire life with a rare disease called dermatomyositis, which the Mayo Clinic website describes as an uncommon inflammatory disease marked by muscle weakness and a distinctive skin rash.
Juan Carlos, 26, and the rest of her family saw how this disease plagued her for a lifetime. The smiles in her pictures bear a sharp and admirable contrast to her struggle. The pain which she knew all her life was something few people saw beyond her family.
“My daughter was a very happy person, loved people, but she was a very sick person,” said Reynaldo Mata as his wife Hortencia spoke softly at his side.
“If you saw her you couldn’t tell that she was sick but she was always in constant pain,” Reynaldo Mata continued.
About the pictures and the smiles: “That’s how she would deal with it, by trying not to show that she was ill or sick, but trying to be a happy person so people wouldn’t feel sorry for her.”
Janet and her family knew she probably would not live a long life, but she lived longer than anyone expected.
Physicians had said she would not make it to age 15, and she did. She said she wouldn’t graduate from high school, but a laminated news article on the table Thursday shows her in her graduation gown. The doctors said she wouldn’t make 21, but she arrived at that milestone too.
She continued through her twenties with continuous doctor’s appointments and surgeries and treatments.
The death caught everyone by surprise because in the days leading up to her passing she was walking around the house and talking and in general good cheer. She was happy to be home from yet another surgery on her hip, and the family was happy to see her in good spirits, Juan Carlos said.
But then …
“She couldn’t breathe, like she had water on her lungs,” Juan Carlos recalled. He had been so confident of his sister’s well being that he’d gone to work. He received the tragic story later in the afternoon. Ambulances and paramedics had arrived and she’d had a heart attack. She was revived but later died at the hospital.
At the family home Thursday, the emptiness and the agony and the rawness of such a strong spirit now gone drenched the air with grief. But the candles and the faces bear witness of a very real and enduring presence, a presence which reminds Juan Carlos of pleasant memories.
It’s many years ago, they are very young. They’re in the garden and he’s filming her performing Carrie Underwood songs.
It’s late last year and the whole family is in Las Vegas and she’s singing along with Carrie Underwood at a live concert. And in the airport he’s pushing her at an almost reckless speed in her wheel chair because she has to get a doggie treat for Mei-Ling, her Yorkshire terrier, who has sustained her through the years.
And now Mei-Ling sits sadly beneath the table, feeling the loss with Juan Carlos.
Janet’s viewing will be Tuesday Feb. 6 from 1-9 p.m. Rosary at 7 p.m. at Thomae-Garza in San Benito.
Feb. 7 will be the burial at 10 a.m. followed with mass at St. Benedict Catholic Church.