“I will not marry you if I have amyotrophic lateral sclerosis [ALS] in the next life,” Chen Yin-hsueh (陳銀雪) typed with her toe, the only body part other than her eyes that still responds to motor functions.
However, this message did not deter her husband of 35 years, nor her family for that matter; because even Chen’s youngest son understands that his mother’s message comes from love and a desire to protect them from future suffering.
Her newlywed daughter was also there with flowers, showing family unity in the face of adversity.
A US doctor was the first to diagnose Chen with ALS, a form of motor neuron disease caused by the degeneration of neurons located in the ventral horn of the spinal cord and the cortical neurons that provide their afferent input. He told her in 1995 that she had only two more years to live.
In order to spend as much time as he could with his mother, Chen’s eldest son opted to stay at home, even when he gained admission to a college of medicine.
He finally enrolled after deferring one year and receiving an ultimatum by the college.
Chen’s youngest son was only 10 years old when she was diagnosed with ALS.
Although Chen tried to isolate herself from the world, refusing to see friends or family, and even going as far as to introduce other women to her husband Chang Chun-yao (張鈞堯), he says that Chen is “the love of his life,” and he is not afraid of the daunting medical bills and hardships that go with caring for her. He has even taken her on many overseas trips.
With their marriage approaching its 35th year, 16 of which Chen has spent confined to bed, their marriage has survived only because of “mutual care-giving,” Chang said.
Chen took care of the family and supported him when he was studying for his masters’ degree and subsequent dentist permit, Chang said, adding that it is only fair that he now repays his wife’s hard work and -dedication by taking care of her.
“In my eyes, she is still the beautiful, smart and capable wife that I married,” Chang said at a fundraiser on Friday as he campaigned for a foundation related to stem-cell research.
Though her ALS has progressed to the point where Chen can only move her eyes and the toes of her left foot, she still uses MSN and Skype to stay in touch with her children, who said that she is “the best mom in the world.”
Translated by Jake Chung, Staff Writer
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