When I’m out a lot “in the public” like I was this weekend (I now see my life in two buckets: away from home and miserable and at home and less miserable), I’m acutely aware of the vast distance between how things look and how things feel. Such is the reality of living life with an “invisible” illness.
Like a ballerina, and against my every will to live without pretense, I find myself rising to the expectations of the audience, agreeing to take first position on the dance floor, keeping my composure when, beneath taut exterior packaging, I am cracking and bruised.
The more I struggle with it, the more I know this is not simply the friction between presentation and authenticity. This is, at least in my mind, like choosing between two questions:
Do you want to dance?
Or do you want to lie down and die?
I’m sure there’s an answer that’s viable between the extremes. But I don’t have the expression for it yet. At least not when I’m in the world, with the regulars, with all their bated breath and their ovations.
For now, I put on my shoes. I just don’t know how to face the crowd without them.
[photo by Henry Leutwyler :: New York City Ballet]
It took me a few years before I could allow even people close to me to see I am suffering. It is empowering to not say “oh, I’m just a little dizzy/nauseous/in pain, it’s fine” and instead say, “I’ll be okay but I’m dizzy and need to rest for a little bit.” I always thought that by showing it to those close to me I’d make them upset. I thought if it was obvious in public I wasn’t 100% (no make up or using chair for example) I was showing weakness and lack of perseverance. I was astounded to learn it actually is easier on my family that I don’t struggle to participate and appear “normal” when there is actually something wrong. They didn’t like that I denied needing to rest or leave when I so obviously did.mimfound in public, no one judges me. If anything, they sometimes ask about my story and end up telling me I’m inspiring. Despite all of this, I too find it difficult to not put on those ballet shoes!
Love this comment. I know I’ve also had many people seem genuinely and entirely surprised when I finally own up to my struggle. Sometimes it’s just easier to wear the shoes!
Enduring the “poor you” face can be surprisingly difficult. I always want to be like, “Got you! I’m actually healthy!”
Love this post, girl. I know that most people, including me, can relate (obviously on a very different level).
You’re so right. This struggle is not only a “sick person’s.”
Yep, know how you feel. Still looking for a ‘concealer’ for my whole body.
This might be my biggest struggle–because I’ve always been vivacious, I feel like I’m letting everyone down if I don’t ‘put on my best face.’ And then it backfires because when I finally have a moment where I simply cannot function on all cylinders, people are like, “Wait! But you seem so energetic and happy! You’ve been sick how long???”
I don’t like to appear weak–even if there’s no better word than ‘weak’ to describe how I’m physically and emotionally feeling. My brain and body are at odds.
Thank you for this. I can really relate to what you said about two buckets, two extremes. I hope we can all learn to take off the shoes more often, to find that middle path, to really be seen and hopefully encounter grace along the way.
Yes–”…to hopefully encounter grace along the way.” Perfectly said.