My SMA community educates, cares, lifts me up, sustains me

Ty Dykema is an artist, musician, and punk rock connoisseur from Grand Rapids, Michigan. He has spinal muscular atrophy (SMA) type 2.

Dykema and his friend Kevin Schaefer attend the Cure SMA Annual SMA Conference.

Community is the one great and gentle unifying force that threads together each piece of my life. As a person with SMA, community has to remain in focus at the center or else the lifestyle I love to lead begins to fray.

To continue to live in my own apartment, to make it to my appointments, take part in freelance opportunities, hangouts, and especially art and music events that nourish my soul, I have to rely on the caregivers and friends who ultimately make up my chosen family to help me get from point A to point B and usually help me within those spaces.

If the presence and care of others will inherently be something I need for survival, it ought to feel communal and thus enjoyable. And to me, within my community, it does.

Another important part for me is being present within the SMA community. There’s a magic to being side by side, whether in person or virtually, with people who can relate to the lived daily experiences we have. While many of us come from different places, both geographically and ideologically, the people I know personally who also live with SMA are adept at understanding each other and meeting others where they’re at on their own journeys. We share ideas for interdependent living, accessing crucial resources in our surrounding areas, and organizing and mobilizing progressive ideas.

Dykema talks to his friend Mikey Hazel, who also has SMA.

At some point in my life, the SMA community at large and the community of people that make up my caregiving network began to blend. They’ve taught me so much about humanity and, even more importantly, about my internal self.

It’s through these deep loving connections that I’ve recognized that my contributions to the community are not defined by what I do but by who I am. Through the love of my people, I see that, like so many of them, I am a caring, compassionate, understanding, flexible, talented, driven, and thoughtful person who is fun to be around.

Community keeps me physically sustained and community allows us all to grow together.

In recognition of Spinal Muscular Atrophy Awareness Month in August, the Faces of SMA campaign features a multimedia series with written essays and video interviews highlighting the real-life experiences of people affected by SMA in their own words. Follow us on Facebook and Instagram for more stories like this, using the hashtag #FacesofSMA, and check here for more.