Acting Up, Ehlers-Danlos Style

Acting Up, Ehlers-Danlos Style

A few months ago, our community’s theater company held auditions for two productions. At the suggestion of someone whose opinions I trust, I contacted the theater company and arranged to audition for one.

The river that flows from Egypt straight to my house

In my excitement to try something new and fun, I had altogether ignored the physical and cognitive limitations imposed on me by Ehlers-Danlos syndrome and postural orthostatic tachycardia syndrome. I didn’t want to consider that these might get in the way of doing this new and exciting thing. I may have lied a little to myself when I decided to audition. Some people call this denial.

Reality hits

It didn’t strike me that I might have real trouble with this until I sat down with the director to read for the parts. The play is very physical and requires all actors to remain on stage.

I didn’t want to get involved in something that affected other people just to let them down, and I certainly wouldn’t conceal my problems from the director. I had a decision to make, and I had to make it then and there.

Real talk

I reasoned that I could do the things required of me with the use of adaptive aids, such as compression garments and bracing worn under my clothes. I told the director that my physical condition prevented me from standing in one spot for a long time, but I could stand for short periods with the use of adaptive aids. He said that seating would be provided and I wouldn’t have to stand for long periods. The part also would not require any lifting or rigorous physicality. My confidence in my abilities was restored, based on frank discussion and examining the situation rather than wishful thinking.

The results

We read for quite a while, and a couple days later, the director informed me that I had been chosen for a part — as one of the main characters!

For the last few months, I have been learning my part and this play. I easily could have allowed my limitations to prevent me from making a commitment. Oh, they affect me and are challenging, but the benefit of connecting with others on an important project has been worthwhile.

The play is about a teenager with special needs who faces big challenges while navigating his way through life. He bravely faces those limitations and pursues something interesting to him, has quite an adventure in the process, and (hopefully) is better off for it. Sound familiar?

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Note: Ehlers-Danlos News 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 other 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 Ehlers-Danlos News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Ehlers-Danlos.

Kimberly Stark is a native Texan and long-time Coloradan now living in the hills of north central Pennsylvania. The adaptation required to navigate life with Ehlers-Danlos Syndrome, POTS, and Narcolepsy continually shapes Kim’s skillsets and broadens her interests. She strives to maintain an active lifestyle for her family and enjoys her small town community. The drive to help others faced with similar challenges has led Kim to a position with BioNews Services’ ehlersdanlosnews.com, where she offers encouragement and practical advice to readers by sharing her own struggles, victories, and insights through a column entitled “Unbreakable.”
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Kimberly Stark is a native Texan and long-time Coloradan now living in the hills of north central Pennsylvania. The adaptation required to navigate life with Ehlers-Danlos Syndrome, POTS, and Narcolepsy continually shapes Kim’s skillsets and broadens her interests. She strives to maintain an active lifestyle for her family and enjoys her small town community. The drive to help others faced with similar challenges has led Kim to a position with BioNews Services’ ehlersdanlosnews.com, where she offers encouragement and practical advice to readers by sharing her own struggles, victories, and insights through a column entitled “Unbreakable.”

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