I am lying in bed. It is 4 am. The TV is flickering. I am listening for it, I am waiting for it. Next to me a gentle tossing. Time for suctioning? I go over to the other side of the bed so we can have eye contact and ask my mother if it is time for suctioning. She closes her eyes for a second, indicating that yes, that’s what she wants. I help her place the suctioning tube in her mouth and I switch on the machine. Whirrrr. We maintain eye contact. Whirrrr. Five minutes later she nods with her eyes that it’s enough. I switch off the machine and we prepare to go to sleep again. (Personal diary, Autumn 2010)
My mother, Vagelio, was diagnosed with a fast progressing subtype of motor neuron disease (MND), also known as amyotrophic lateral sclerosis, in the fall of 2008. She showed the first signs of dysarthria in early 2008. Soon after, the rest of her body became weaker and her movements slower. The first function to be affected was her speech and then her arms became weaker, followed by her breathing muscles and legs. Dysphagia, caused by increasing weakness in the muscles involved in chewing and swallowing, made eating difficult. Saliva and food would pool in the mouth, necessitating regular suctioning. She could hold a pen and type on a mobile phone to communicate until a couple of months before she died in late 2010. I have saved thousands of text messages that we exchanged in the years of silence.
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