My Life With Ehlers-Danlos: Taking EDS to a Concert
July 5, 2016
My husband (Joe) is a Bruce Springsteen super fan. If you walk into our house while we’re cooking or cleaning (or doing any other monotonous every day task), you’re likely to hear Bruce (He’s such a part of our household that I feel confident with referring to Mr. Springsteen on a first name basis now.) blasting from the $5 speaker that sits on our dining room table. He knows every song- even the obscure songs that I’m fairly confident Springsteen himself writes the lyrics on his hand when performing. The fandom is serious here.
This past Christmas I bought Joe tickets to a Bruce Springsteen concert in February. It’s only at this point that I feel a full disclosure is necessary- I’m not quite as much of a super fan as my husband. I paid way too much for tickets in the nosebleed section out of love much more so than a desire to see The Boss. This was also my first concert since the major onset of Ehlers Danlos Syndrome symptoms.
I’ll be honest- it was one of the most miserable experiences of my life. Let me be clear, though. Bruce Springsteen is an amazing talent with a beautiful message of love and hope. I was amazed by his talent, his unity with his band, and the inspiration he conveyed. I was also amazed at how close together rows are in the nosebleed section, how many steps I had to climb to get to our seats in row #4128, and how inaccessible restrooms were once I got to my seat.
I can’t give you advice for future concert pursuits based on my exceptional planning pre-Springsteen concert. I can, however, tell you what I learned from this near debacle.
If you have a wheelchair or other mobility aid- use it.
So much of my pain could have been avoided if I had brought Snookie the Wheelchair. (Yes, she has a name.) Not only could I have avoided what felt like a million steps (and the resulting hour long tachycardia from said steps), but I would have also had my own space. Concerts seem to convince everyone they can dance. As I sat in my cramped seat in row #4128, I was repeatedly bumped by flailing elbows, hands, and behinds. If I had used the wheelchair, I would have been in handicapped seating. I would have been protected from the intoxicated gentleman next to me that not only commandeered my arm rest but also half my chair space.
It’s a concert- not a day long event.
As much as I feel like I’m getting accustomed to living this EDS life, sometimes I’m just dumb. There’s no other word for it. For whatever reason, Joe and I decided to meet friends for lunch before the concert, go for ice cream, explore the area around the stadium, and make multiple bad decisions for someone living this EDS life. If you’re going to a concert, go to the concert. Enjoy the concert. If you plan an entire day of festivities prior to the concert, you’ll be tired, dizzy, nauseous, and in pain. You’ll be far from on top of your singing and dancing game. Rest. Concert. Rest again. Follow that model, please!
Do your homework.
If someone would have told me pre- Springsteen concert that he was likely to play 3 ½ – 4 hours, I would have prepared differently. (Okay, this was my husband’s 8th concert. He probably told me, and I didn’t listen.) Get a general idea of how long the concert will last. If the performer is known for singing every song he or she has ever known, it’s probably a good idea to make sure you have the ability to sit upright for that long (I’m not complaining; the fans loved it). Dress accordingly. I’m all about being “concert cute,” but I should have worn more layers. It was freezing when we got there and roughly 8000 degrees an hour later when the behinds started shaking. Do you know what doesn’t react well to extreme temperatures? Yeah, joints that are barely holding themselves in socket.
If you’re reading this thinking that I will never go to another Springsteen concert, then I’m not making myself totally clear. He and his band are amazingly talented, and I was in awe of just being in their presence. However, when I return (and Joe attends his 9th concert), I will be smarter. I will be better prepared. I might not be “Born to Run,” but next time, I’ll be able “Dancing in the Dark” with everyone else- even if I’m wheelchair dancing.
I understand that everyone isn’t a Bruce Springsteen fan, but I’m curious. What concert would you be willing to endure physical pain and a symptom flare in order to see?
Tiffany Early is a 31-year-old former middle school teacher who enjoys blogging from her back porch. She is an advocate for Ehlers Danlos Syndrome, Dysautonomia, and the chronic illness/ disabled community everywhere. Tiffany lives in Campbellsville, Kentucky (roughly the middle of nowhere) with her super fabulous husband Joe and tiny but aggressive dog, Zoey. She enjoys adventures with her husband, Netflix marathons with Zoey, and hanging out with her family- especially her super cute nephew and niece, Hagan and Mia.
Tiffany manages her blog ( www.crazychroniclife.wordpress.com ) where she examines life and relationships with chronic illness while laughing at the absurdity of the whole debacle. She also writes about her adventures in “Snooki”- the attention-seeking wheelchair. She also runs an online support group for those living with chronic illness. Tiffany strives to find the bright side . . . or at least the humorous side to living with Ehlers Danlos Syndrome every day and wishes peace, love, and health to the entire rare disease community.
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