A virtual art show gave FSHDers a chance to show off our talents

I was tempted to do a play on the show “America’s Got Talent” and title this column “FSHDers got talent,” but I knew the improper grammar wouldn’t get past my excellent editors. That being said, after participating in a recent FSHD Society wellness group session, I know that my fellow FSHDers — those of us with facioscapulohumeral muscular dystrophy — truly do have a lot of talent.

Ranae Beeker coordinates and manages the programming for the wellness group. She always makes sure to prepare great topics for discussion and bring in qualified experts to present critical information that’s relevant to those of us struggling with FSHD.

Recently, Ranae came up with the concept of doing an FSHD talent show of sorts. All members were invited to participate by submitting samples of their art, along with a little explanation of how their craft impacts their life.

Most wellness group meetings focus on treatment and the challenges of dealing with FSHD. I was excited to be focusing on other aspects of our lives.

Recommended Reading

December 4, 2024 Columns by Shalom Lim

When art and advocacy meet onstage

Regular readers of my column know that I’m a musician and love to share my music as far and wide as I can. I wrote up a short summary of what music has meant to me and selected a recording of one of my “Wednesday Afternoon Music Break” videos that I do live on Facebook every week. I was just one of a dozen group members who responded to Ranae’s call.

Ranae put a lot of time and effort into organizing the visual art into a slideshow for our FSHD talent show on March 10. During this special session, images or videos of each artist’s work were displayed as Ranae narrated and the artist spent a few minutes speaking about their creations and what their art means to them.

How the beautiful artwork inspired me

I was truly impressed by the variety of mediums and techniques. Several painters presented some outstanding, award-winning pieces. There were also some photographs that drew oohs and aahs.

One wellness group member is also a member of a model club. He’s assembled some elegant, detailed models of classic cars and aircrafts over the years. A highlight for me was the creativity of a member who retired from dual careers in education and interior design. During the pandemic, she began doing some incredible textured art using nothing but off-the-shelf spackle from a hardware store and a bit of paint.

I was the lone musician who participated. I thought the song I chose to submit was a perfect complement to all the amazing visual artwork. After all, a key line of “Everything Is Beautiful,” the song I submitted, is, “Everybody’s beautiful in their own way.” In their own way, every one of the FSHD artists creates beautiful, uplifting art.

It was obvious that, for most of us who presented, our art is about more than just putting paint or spackle on canvas, snapping a photo, assembling a model, or putting musical notes on a track. Art is also a great emotional outlet, as well as a healing activity.

FSHD Society wellness group meetings usually consist of half an hour of open conversation that allows group members to ask questions, discuss concerns, or just chat. This is followed by an hourlong formal meeting on the chosen topic.

Ranae planned a two-hour extended special meeting to give every artist five minutes to talk about their art. There was also time for group members to ask questions and make comments afterward.

In addition to well-deserved praise for the artists who presented their creations, there were also more questions than the time allowed. Email addresses were exchanged, and online chats will facilitate future conversations and collaborations.

The artwork presented at our meeting was truly inspiring. It encouraged me to keep putting my music out there, and I hope it encouraged others in our group to start creating. Art can be healing for both the artist and the art aficionado.

If you’re not involved in some type of support group, you should consider joining one. If you’re already involved in a group, I suggest you consider holding a special meeting to allow members to share aspects of their lives beyond the main focus of the group. If you do, I think you’ll find the experience as encouraging and inspiring as I did when our wellness group set aside some time to let our FSHD stars shine!

Note: Muscular Dystrophy News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.