Sunday, May 20, 2007

Living in Fast Forward -- Alltel arena and the Kenny Chesney concert

So, we saw Kenny.

M. calls him her husband. The show was awesome. I didn't wreck a minivan. That family friend worked her butt off for us, but no luck on meet and greets. It was okay though.

At one point in the whole ordeal, I began to just get pissed. There were 18,000 people there and none of them have a freakin clue what M. has to go through just to get there to see her favorite country star. This is her life. And very little of it has to do with disability and a lot of it with stupidity -- not hers, by the way.

First of all, after locating hotel, changing, loading up the van, locating the arena, circling a few times and asking a few police officers where the disabled parking was, getting nervous, I found the big wide, almost-empty parking lot in front of the arena. Great! I breathed a sigh of relief as I piloted the mini-van into the entrance.

A lady wearing a special olympics bracelet told us "Suite holders only!" I smiled and said, "We have a disabled permit."

"Disabled parking is full." she says. "There are 12 spaces and I've already let 14 in."

(12 spaces for an 18,000 seat arena. 1 in 5 Americans has a disability. Do the math.)

I smile nicely, say "We don't have a choice on where to park. We can't just park and unload a wheelchair anywhere."

She tells me I can unload M. here and then park elsewhere.

No way and I unloading M., who gets terrified of crowds in Wal-Mart. This is her first arena concert. I'm responsible for her. And after the concert, do I just leave her in a dark parking lot while I walk god-knows-how far to get the van? No way.

But the discussion between me and the guard goes no where. "I get yelled at either way" she says. "If I let too many in, the suite holders yell at me." I ask for a number to call because I understand that someone on the front lines has no power and it's not her fault. I think the damn suite holders can freakin walk, but I'm polite.

While I'm calling the box office, another van tries to pull in. I confer with them and we spot disabled parking (and we think, regular parking, but we're not sure) on a side street? parking lot? we don't know for sure. I know it's a street because I just drove down it, but the yellow line is faded, but off to one side, there are diagonal parking slots. Great. The wheelchair lift will unload directly into the street. Lovely. But we make it into a parking lot if it wasn't before. I start to think of loading a chair back into the van in this spot (under an overpass) in the dark, and I shudder a bit.

Everyone I see in a wheelchair or with a permit, I tell them "write a letter about the parking."
I'm pissed but I try not to go on and on. The best way to deal with this stuff is to deal the best you can when it happens and raise hell later. And M. is always anxious and I am always eager to not be upset around her, to make her feel at ease. She's good for me like that.

So, we have to cross at pretty much a blind intersection. There is nothing to do but for me to stand in the street, wave nicely at the cars, and not move until they stop and she can mosey along in her chair. Lovely. I'm a crossing guard. Don't kill me or the girl in the wheelchair. Thanks.

I'm a total bitch in the crowds. I just am. I plow through ahead of her and she follows me. "excuse us. Coming through." I know no one is looking for her 3 feet off the ground, I know she's nervous, I know she doesn't want to be rude. So I am rude as hell for her. Okay, I smile while I do it, say "Excuse us everyone, we're coming through" but I don't weave around. I'm surprised at this sudden bulldogness. Maybe it's because I might soon have to have my own scooter if my rheumatoid keeps getting worse, or maybe it's just because I know how much this show means to her and I'm angry that it's so hard for her to do something she loves. And I think it's hard for me to see a concert. I have no clue.

I get my purse searched. M. points out that she has a purse. "That's okay" the guard says. I guess the wheelchair renders one incapable of raising hell or making a Kenny bootleg. Good to know if I ever want to carry out a plot against an arena, and if the parking situation doesn't get better, I might want to.

We get into our seats. She doesn't want to sit in her chair anymore. I understand. She likes feeling grounded and stable, and this chair, even turned off, rocks a little. The disabled seating is pretty good, in front of the box suites. (Except those rich %#^#%!s got better parking). It's a completely unobstructed view, and we are off to one side, but pretty close to the stage. I realize that it would have been possible for us to get her chair onto the floor for better seating, but this is good.

So I spend the concert sitting in a wheelchair, standing only every now and then when I get excited. She stands a few times, but because we are in front of a rail, she's shaky. We climb up a short flight of stairs (leaving the chair there) to go get food. The crowd is a nightmare. She holds my arm. Carrying the food back down the steps is a bigger nightmare.

The attendants at the disabled seating areas were awesome. They would stop the foot traffic to let the chairs come through. They caught my bottle of water when I dropped it trying to get M., two mini pizzas, two large fountain drinks, two bottles of water, and two purses down the stairs. I have balance issues with stairs myself. I can't speak highly enough of the attendants. They also ran off any non-disabled "visitors" in our boxes who would try to sneak in from the cheap seats.

She had a good time. I didn't realize until halfway through the first act that because of her visual impairments, she really couldn't see the stage. She could see the big screen though. Sometimes, she would sing and get excited and do the standard concert stuff. Sometimes, though, I would see her tremor all over and not really have an expression on her face. I worried about the lights and her seizures. When I went to the bathroom, I stupidly bought a flashing lei and put it around her neck. Her seizures aren't triggered by lights, her mom had said, but when I looked at her with that around her neck, her good arm tremoring, her whole body shaking, I freaked and took it off her. She often would either seize or freeze up at the lights with that blank look, and I would shake her shoulder. I was sitting on her "bad side" anyway, which bothered me. Sometimes when the lights would blink really fast, I'd cover her eyes.

By the time Kenny came on, she was totally spent and exhausted. The coolest thing I've ever seen, though, was when she caught sight of him. The curtains fell (I remember that move from "In the Round, In Your Face" --Def Leppard circa 1988) and there he was. I looked over at her to see if she spotted him. I could see her searching with her head turned (she sees better out of the corner of her left eye) and then when she spotted him, she sort of shrieked. It was awesome.

She sang along on some songs, but mostly just watched in total awe. And yawned. She was spent. I totally adored him for her, did all the concert things, the waving of the arms to get his attention, the screaming out lyrics. I've picked up most of his lyrics by osmosis or by listening to him with her in the car. (Four hours to Little Rock can make you know a CD really well).

After the show, when she stood, she almost fell. She was dizzy. Every muscle in her body froze and I couldn't tell if it was panic or seizure. But we got into the chair, and up to the merchandising table. She couldn't see, of course. Too many people. We found a place to the side and I waved at a lady. "Excuse me ma'am, can you bring some hats over here? We can't see them." The lady was understandably pissed at first that I demanded that, but then she spotted M. (There's really no good way to say "Bring these to the girl in the wheelchair because her vision is bad." without totally insulting M.) But because the lady had to stand with the hats so we wouldn't steal them, M. got nervous to make her decision. "Which one do you think I want?" she asked me.

If I ever needed a sign that I was too overbearing, that was probably it. So I joked with the hat lady about whether or not Kenny was for sale while M. decided. Then when it was time to go, a little 20 something leaned totally around M. while she was putting away her money., like M wasn't even there. I saw her foot under the chair but said nothing. "Come on back, you're good to go." is actually what I said. Little girlie needs to learn manners. M. did not crush her foot, to my eternal disappointment.

Because we had waited a bit for the crowd to thin out, I was worried about loading up the chair under the overpass. There were some people around, but as I fumbled with the tie down straps, the crowd thinned more and more. Alone, at midnight, in a dark parking lot is not a good place to be. I again cursed the suite holders and their well-lit, security patrolled parking. Cars swerved around me while I knelt on the pavement and attempted to secure the chair. I finally just loaded it up, only loosely strapped in, for the ride back to the hotel.

We had traded our two beds in for a king bed in a room with an accessible bathroom. After working out blankets, (she's a blanket puller!) we crashed. I dreamed strange dreams of getting lost, of driving, of us getting hurt. I was more nervous that I thought I was, I guess.

Next morning was a rush to awaken and shower before check out. The "accessible" shower in the hotel was not roll-in, but was fairly low and had sturdy grab bars. I was very proud of M for even attempting a shower in a strange place, considering her bathtub phobia.

That's pretty much it. I fixed the straps on the wheelchair and took a very worn out M. home.

It shouldn't be this way. It shouldn't be this hard. The parking was part of it, but also having to fight the crowds when you have limited mobility was another. The lights were another. What should I do, demand that Kenny have no light show so that she can see him? Demand that we get served pizza instead of fighting the crowds? Demand she have more energy? Demand that people see her when she's in the wheelchair? Demand that whatever gave her the disability take it away? I know lots of people with lots of disabilities. But I've never met anyone with such a perfect storm of disability, of small things that add up so much, that make every day of her life such a struggle. She's awesome.

And I'm exhausted. I drove there with an icy hot wrap on my wrist, trying to hide the fact that I was in a lot of pain, and more importantly, unsure of my ability to help her if my pain got bad. Had I not already planned this trip, I wouldn't have done it without a third person since my rheumatoid has flared. But I knew I had family in the area to call if things got bad.

She's learning to be independent. I'm learning to ask for help. We're good for each other.

Anyway, good night, Kenny, where ever you are. You made M. very very happy.


Laurie said...

So glad M had a good time! Kenny is my favorite. At 2, aside from the Backyardigans and Elmo, Kenny is Josh's favorite too. Maybe it's because we sang along in the car while he was still in my belly! Thanks for sharing your trip, I think the arena needs to address that parking issue. I know going to any concert is always difficult even when your fully able, so the arena should do whatever they can to assist the differently abled any way they can to make their experience easier to manage.

Tami said...

you need to make sure to take care of yourself, too.
as fabulously as you treated her-with your innate maternal instincts-
you need to make sure you're doing ok, too.
this essay was so well-written- you could get it published somewhere.
i really want to meet you someday.
i think we'd be good friends.

Lesley said...

Thanks Laurie and Tami!

Tami, it seems strange we haven't met! We're each other's evil twin, I think. :)

I took today off work and I'm looking into taking the FMLA to keep my benefits. I got paid for the weekend (although my share of tickets, gas, and hotel ate that up.)

But yeah.
As my PT keeps saying "Yes, you can do these things for other people. Yes, you can work. But at what cost?" Today, when I slept till 3 pm, I thought of that.

Tami said...

you have to ration your spoons wisely.
i broke down and bought the t-shirt that says "got spoons?" and will wear it to tomorrow's presentation.

All Blog Spots said...

nice blog, keep the good work going :)

Sue said...

I agree with Tami, and would love to see that article published! Hmmmm, I wonder how that might happen??

Wow, Lesley, you have alot more fire in you than you let on. You kinda described me at IEP's or any time my child was or is being left out or treated unfairly. we need more advocates like you!