Life with Ehlers-Danlos: Handicap Tips for Stadium Seating
September 12, 2016
September means a lot of things. It’s the time when it’s officially acceptable to add pumpkin spice to everything. (Thank goodness!) In most of the United States, it’s the first reprieve from the summer heat. And, here in the South Eastern Conference states, it’s the beginning of a several month long football obsession. NCAA football is the topic of every news report as well as general conversation. Houses will boast flags and wreaths in support of the residents’ favorite teams. Friends with differing team allegiances will argue over statistics and referee decisions. Perfect strangers will strike up a conversation with you based on the team name on your t-shirt. Things get serious around here.
September through bowl season is a blur of travel, games, and game preparation. It’s a lot of fun, but it’s also an enormous health stressor. I, personally, struggle with travel, and once we arrive at the stadium, the game is even more difficult. People typically can’t understand my limitations, and it is especially difficult in a game atmosphere. My husband and I meet acquaintances, and I’m uncomfortable by the differences between my peers and I. The frustration of having a rare disease is that most people don’t have a frame of reference for understanding my illness. For example, if someone has a cast on their leg others can immediately reconcile the use of a wheelchair or crutches because they understand their injury. Everyone understands broken bones either from personal experience or someone close to them. However, as a person with a rare disease, I find that those around me have little understanding of my needs. As a result, being in a crowd of 105,000 fans can be overwhelming. I feel like I either have to explain myself constantly- or look like a super diva every time I have to pass my water bottle to my husband to open it for me.
Don’t get me wrong. Football is great. My husband and I support the University of Tennessee with much enthusiasm. But, football (like most things my super extroverted husband loves) is noisy and crowded. I’ll be honest; there are games that I think if I hear “Rocky Top” one more time I’ll cry. Fluorescent orange, the Pride of the Southland band, the deafening roar of the crowd- it’s sensory overload times a thousand. I’m grateful for the tips I’ve worked into my routine that allow me to enjoy the chaos as much as possible.
Ear plugs. Yes, I have orange ear plugs. Trust me, even with ear plugs firmly lodged within my ears, I don’t miss a thing. However, they do take the edge off the fever pitch sound levels. I was afraid to use ear plugs for a while. I thought I seemed like a “stick in the mud” or “party pooper,” but honestly, everyone is too excited to notice what I’m doing. Ear plugs allow me to survive until halftime before the monstrous headache begins. That’s quite an accomplishment given that it used to start before we entered the stadium.
Accessible seating. I’ve given this advice before, but it bears repeating. If you struggle with joint issues like I do, bleachers are truly torture. Request handicap seating. If you’re traveling in a wheelchair, then you’re guaranteed 15-18” of your own space. If you aren’t, you should still be seated in a chair with a back rather than on bleachers. I need to be able to pull my feet up occasionally (or else all my blood gets stuck in my feet, and I risk fainting) and accessible seating typically provides enough space to do that. Swallowing my pride and requesting handicap accessibility for myself has been an absolute game changer (terrible pun- I’m sorry) for my football watching.
Splurge on parking. College football is a money vacuum. I understand that better than most. If you can find a way to save money and still enjoy your favorite team, go for it. However, don’t scrimp on parking. Stadiums have recently banned bags larger than a clutch, so I’m having to pack the bare necessities when I go into the stadium. That means I’m leaving medicine, clothing changes, and medical equipment in the car at every game. The closer we are parked to field, the more quickly I can get access to the things I need most. Also, since Joe is pushing me in the wheelchair (and I’m not exactly made of feathers), a shorter walk means a less exhausted husband- which is nice too.
Wear everything you can. Many stadiums have increased security this year and that means taking a large bag is no longer an option. Instead, I’m learning to layer my clothing. Rather than packing a bag with a blanket for chilly games, I will add an extra layer of warmth under my jacket, for example. I am also learning to utilize pockets. EDS makes wearing jeans almost impossible for me- which seriously impedes the number of pockets I can wear! I’ve found jackets, tunics, and sweatshirts with extra pockets for carrying all I need. I stuff my pockets with my game essentials- ID, an insurance card, cash, a cell phone (pre-loaded with Emergency numbers, just in case), rescue medicine, mints (for the inevitable nausea), and lip balm. Oh yeah, and a ticket to the game.
I could go on forever with my pre-game routine, but I feel like I would be repeating tips from previous months’ blogs. Dress comfortably. Rest beforehand. Put a cushion in your wheelchair to protect your neck and back from bumps in the road. It’s a lot of extra work in order to be able to do something that I enjoy. There have been times that I’ve questioned whether or not it’s worth it, but I ultimately always decide that it totally is.
Happy Fall. Happy Pumpkin Spice Season. And, GO TEAM (whichever team it is that you support!)
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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