This article first appeared in Mantra Magazine

A Human Movement for ALS

By Hope Cross Dezember

What happens when we all work together? What happens when we forget the differences and focus on something together? A human movement happens.

ALS Awareness Our Mission

My husband, Steve Dezember, has ALS, also known as Lou Gehrig’s disease. There is hardly a more frightening or devastating prognosis. The vast majority of patients die within two to five years of any symptom of the disease. ALS attacks your body, killing your motor neurons and muscles, leaving you handicapped, vent-dependent, wheelchair-bound, and voiceless. Imagine not being able to brush your teeth, tell a joke, go to the bathroom without someone present, or enjoy your favorite meal.

Since Steve’s diagnosis in 2011, we have made it our mission to spread awareness about this disease, which affects roughly thirty thousand Americans. Through social media, our website, and the documentary, Hope for Steve, we have tried our best to show what an ALS patient goes through on a daily basis.

ALS Ice Bucket Challenge

In August 2014, our dreams manifested into reality. ALS made national news. Not just one day but the entire month. An ALS patient named Pete Frates and his family started the Ice Bucket Challenge. I am sure by now you have heard of it, participated in it, blogged about it, or donated—thank you! If so, you took part in a human movement.

ALS has been trying to get its voice heard for years with walks, fundraisers, and people speaking out, but it has never received the national attention it deserved. This challenge has spread across the masses and brought this cruel disease into the spotlight. Of course, people had their own opinions about how the challenge should be done and who to donate to, but they still agreed on one thing: this disease is too heartbreaking to ignore. People stood together. Even those who were against the ice-water part got creative and started their own versions of the challenge.

Humans started this because we saw other humans suffering and wanted to do something. We came together for a common cause. This proved that people do care, people are good, and most importantly, we can work together. If you are lucky enough to witness a human movement, soak it in and really express gratitude for having seen it. Even with our beautiful differences, we can all stand together to make this world a more peaceful place.

Hope Cross Dezember is a full-time caregiver for her husband, Steve, who is battling ALS. She worked as a drug and alcohol therapist for five years before leaving her job to care for her husband. She is also a writer, model, artist, and co-producer of the documentary film Hope for Steve. She and Steve are the 2014 recipeints of the Mary Lou Krauseneck Courage & Love Award to be presented by ALS TDI on November 7 in Boston, MA.

Photo Credit Jennifer Chung