The ALS Association

Through the Eyes of Your Mini Me

Alyssa E. New York, New York

Kiss My ALS- Through The Eyes of Your Mini Me May is ALS Awareness Month, and the same month I became painfully aware of this disease. Living far from home, my father frequently called me get the scoop on my "city life," leaving hilarious and loving voice mails that I saved for stressful days. It was a typical Monday in 2012 when he phoned, yet the conversation was anything but. As he began to explain the situation, my mind could only grasp a few phrases. "Life expectancy is three to five years." "There is no cure." What do you do when your favorite man in the world is facing death and says there's no way around it? Try to fight it, of course. But I soon realized how hard the fight would be. Unlike the fight against cancer or other neurological disorders such as Alzheimer's or MS, Amyotrophic Lateral Sclerosis, known in the U.S. as Lou Gehrig's Disease, flies low under the radar. My father was lucky enough to be accepted into a clinic early on, with access to drug trials, assistive technology, and advice from top-notch specialists. However, the disease continued to progress on its own terms. It’s only been two years, and my father now has no use of his arms or legs, leaving him unable to walk or hug his children and grandchildren. Even worse, his speech is severely impacted, a hard pill to swallow for an avid communicator and extrovert. And what about those who don’t have access to clinics, technology or reliable caregivers? (Shout out to my amazing mother.) I can’t imagine the struggle. My dad maintains his infectious spirit in spite of daily defeats. I don't get the voice mails any longer, but he uses a communicator operated by his eyes to still answer some texts. For the time being I just want to soak up every moment I have with him, even if it’s only a Netflix marathon. We are tough and have faith. So with every fundraiser, ALS walk, clinic visit, and research update, I pray for a miracle. My hope is for a future generation who recognizes ALS and beats it. I want a cure that makes ALS an aspect of one’s life, rather than a death sentence.

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