Living Well with ALS

Living Well with ALS

• By Cristy Hardin, I Am ALS Volunteer

Melody Ruffin Ward has a fascinating background and an amazing, strong soul. Originally from New England, she and her husband moved to Akron, Ohio in 2017, where she currently works as chaplain in a drug rehabilitation facility. After completing her graduate work in dance at the University of Michigan and retiring from a 20-year career as a modern dancer in 2012, Melody completed her Masters of Divinity at Andover Newton Theological school in 2015, and was ordained a chaplain in the United Church of Christ.

Throughout her illustrious career as a dancer, Melody captivated audiences with her grace and precision on stage. However, a silent and formidable foe: amyotrophic lateral sclerosis (ALS) was looming in the background. As the disease progressed, she noticed subtle changes in her body, slight tremors that she initially dismissed as fatigue. 

Melody’s ALS symptoms started in 2021/2022 with trembling and stiffness in her arms and shaky legs. She knew something was wrong immediately and set out to find an answer. During her first meeting with her primary care physician, she kept hearing him say the words, “motor neuron,” under his breath. Following his suspicions, he sent her to “all the right doctors” and she received her official ALS diagnosis in March 2023.

Melody’s indomitable spirit and resilience continue to inspire others as she navigates this new chapter of her life with grace and dignity. Following her ALS diagnosis, Melody joined a local adaptive dance team and shared that she loves that she can still enjoy her passion. When asked about her symptoms and progression, she said that she lives a rich life and that she has chosen to lean into her diagnosis, rather than resist it, because she is relieved to know what she is facing. She has decided to keep a positive attitude, but also said that, “I am not naïve. Some days I recognize that things will progress, and I am beginning the process of thinking about what that will look like for me.”

Melody also shared that her medical team has provided excellent care, even when they have not fully understood ALS. She has learned to advocate for herself, where at the prestigious Cleveland Clinic, they are honest in revealing they do not know enough about ALS. Melody has connected to ALS organizations like I AM ALS and the Ohio ALS Association in an effort to learn more about her disease. She also discovered an ALS Forum newsletter, Living Well with ALS, moderated by Dagmar Munn, who was diagnosed in 2009. Another useful resource has been Compassionate Care ALS, founded by Ron Hoffman. The information she obtains from these advocacy groups has been her saving grace, providing her with the information needed to help herself and her doctors. Despite their lack of ALS knowledge, Melody said, “I have really good care here since we work together as a team.” She goes on to say that “every doctor has been amazing!”

As a Black woman living with ALS, Melody’s journey embodies resilience in the face of intersecting challenges. Growing up, she defied societal expectations, breaking barriers and pursuing her dreams with unwavering determination. Her vibrant spirit and infectious laughter fills every room she enters, but behind her radiant smile lies a silent struggle. Despite the odds stacked against her, she refuses to let the disease define her, drawing strength from her community and heritage. Melody’s journey is a testament to the resilience of Black women, navigating the complexities of ALS with grace, dignity, and an unyielding spirit that transcends adversity.

Melody shared that she would like to help people of color, particularly Black individuals, in cities and towns where inclusion for Black people with ALS is challenging due to limited resources and knowledge of this disease in their communities. She said, “I would like to find a place where Black people living with ALS can come together in person and know they are not alone. I feel like we need a place to share our stories and a voice to let others know who we are.”

When asked if she plans to stop working, Melody said, “I haven’t heard God tell me to stop yet. It never dawned on me that I would need to stop working; that just isn’t an option. I want to keep my mind sharp, and because of the nature of my ministry with people in recovery, I know that seeing me in this body might just shift some things.”

“The world of recovery is real, and I believe every day in my heart, when they see Chaplain Melody walk into that building, they know that I am still living a full life — living well with ALS. I want my disability to inspire the patients in recovery.”

In addition to the great support system she has at work, Melody’s family has provided her with just as much support, although  she does feel geographically disconnected from them at times. Unfortunately, she does not see a lot of minorities, especially those living with ALS, in the area where she lives and often shies away from gatherings where other Black people are not in attendance. Melody is looking for ways to connect with other minorities as her ALS progresses. She finds it challenging, though, as she said she has heard in numerous settings “that Black people don’t get ALS.”

While she does participate in some online ALS support groups, it’s difficult for Melody to  have those same interactions in person with other individuals who, like her, are living with ALS. Even in some of the online settings, there are very few individuals of color, and most tend to keep to themselves. Melody would like to see opportunities for other Black individuals living with ALS to come together as a community, get to know one another on a personal level, and offer support to other minorities living with the disease. “I would love to sit at a table, not on Zoom, and have a meal with others living with ALS.”

Melody is part of the I Am ALS Many Shades of ALS Community Team, whose aim is to bring attention to and provides resources for the mental, physical and social health of people of color living with and impacted by ALS.

Melody hopes to get more involved in additional advocacy efforts aimed at supporting people of color who are living with ALS. Her unwavering courage makes her a beacon of light on the intersectional challenges faced by marginalized communities living with ALS, inspiring hope, and driving change for a more equitable future.