WHEN OUR BODIES BETRAY US
The disease that killed my mother started with her right elbow. Back in July, she banged it–hard–and initially attributed any subsequent weirdness to an ulnar nerve injury. We assumed this localized issue was why she suddenly couldn’t write clearly and her arm was moving all around without her knowledge. We only realized it was neurological once a doctor at NYU’s ER threw out the term Alien Limb Syndrome in August. They even brought someone from the movement disorder clinic to come film her strange condition for “teaching purposes.” I flew home two days later and had a front row seat to her rapid decline. By the time she passed away on September 23rd, she was essentially paralyzed and unable to speak. Her brain/body connection had completely broken down.
It was terrifying to watch my mom lose more and more control over her limbs. We would be sitting at the kitchen table and she would have no sense of where her hand was causing her to drop food and smear herself with whatever she was holding. Meals were a tense time with my father wanting her to pay close attention so as not to spill and me taking more of a who cares if she spills attitude. Her body was operating under its own rules–breaking social norms and barrelling through personal space. I found myself uncontrollably laughing one morning when I realized she was trying to use a bagel to operate her phone. There were moments that were just so bizarre my body reacted in hysterics (luckily by laughing and not sobbing).
We did our best to keep up with her malfunctioning brain, but always felt two steps behind. We swapped out normal, breakable plates for plastic ones and utensils quickly became a thing of the past. We ordered multiple types of water bottles to make it easier for her to drink. When it became apparent that neither hand was cooperating enough anymore, my mother let us feed her. My proud, independent mother gave us this kindness. Because she knew resisting our help would only make things harder on everyone.