Independence Is Key

So, I went to Lady Gaga’s ArtRave: The ARTPOP Ball in San Diego last Monday and as much as I would love to talk about how fantastic the show was, I feel I should talk about my experience at the hotel I stayed at.

* WARNING: This post has a severe lack of photos (Sorry!!)

When my grandmother and I were searching for hotels, we realized that because we waited so long to book one, other Little Monsters had beat us to the punch. Most hotels didn’t have a whole lot of room and the handicap accessible rooms didn’t have enough beds. And yes, I am one of those people who can’t share a bed. Although we found a few acceptable, wheelchair-friendly rooms, my grandma had found a normal hotel room that was spacious enough for my scooter, but lacked the necessities I required in the bathroom (i.e. bars, railings that make standing easier for me and help me use the bathroom easily). Then, I had a thought:
Realistically, my aunt, cousin, and I were only going to be in the hotel room for a night and on Monday, most our night would be spent at the concert. But on top of the stay being extremely short, I realized something even more important: Not every place I go to is going to be completely wheelchair-friendly and with my transition to a four-year college fast approaching, I figured I might as well use this as a learning experience to see just how much I can do without the help or support I am so accustomed to. So, we booked the suite with two beds and a jacuzzi tub and called it a plan. 
When we got to the hotel, the first thing I had to do after a three hour drive and a whole can of sugar-free Redbull was pee. The bathroom was beautiful and spacious, and when I looked at the toilet, I’ll admit that for a split second, I freaked out. But the thing about me that I love (and am very proud of) is my ability to stay relatively calm when others in my situation would panic. I immediately had a game plan figured out and while I needed my cousin to supervise the first time, I was pretty used to my quick routine by the second bathroom trip.
When it came time to relax after The Rave, I stood up to the sink for at least fifteen minutes washing off the dark eyeshadow, heavy liner, and dark purple lipstick that was now sticky on my face from the sweat-inducing dance party I had forty-five minutes before. I sat down in my scooter and I felt my legs shaking, as they weren’t exactly prepared for as much action as I put them through that whole day. I changed out of my leather leggings and Gaga tee and into my sweats and baggy shirt. I was in comfy clothes and at the time, I would’ve given anything to be able to just jump right into bed. Of course, with me, it just doesn’t work that way. EVERYTHING I do, down to the simplest of tasks, takes 10x more effort and attention. Just like the bathroom situation, I thought out a quick system to get into my bed. I grabbed onto my scooter armrest and placed my hand on the edge of my bed, pivoting myself over to a sitting position. For most people, this would be a piece of cake- and it is for me when I’m not dead tired from a concert- but this time, I just couldn’t do it without having to take a break.

What a lot of people don’t understand about people who are wheelchair-bound is that, whilst it looks like the easiest thing in the world to sit on your ass and not have to run, jump, sprint, etc,. it’s not exactly the greatest thing in the world for us. With my Cerebral Palsy, whilst it’s a much milder type, one of the drawbacks is that my whole right side of my body is weaker than my left so everything I do requires 10x the stamina. I’ll admit, it sucks from time to time, but it saves money on a gym membership. (You gotta look at the positives, people!)

I finally fell asleep that night, ready to do it all over again in the morning… and I did. The reason why I’m writing this (and I seriously hope that at least one of you reads it) is because this was a learning experience, not only for me, but for my cousin and my aunt. They only see bits and pieces of my life and they have never really had two whole days to understand what exactly it is I do and how much it takes to get everything done in my day. Now they do.

So, to end this novel of a post, does it suck? Yes, there are days where the frustration just becomes way too much and I wish I could just stop. I wish the chair could go away and my bladder issues would leave me alone, but at the end of the day, I have to remember the blessed life I live and the plethora of opportunities that have been presented to me. My chair helped open up a whole new avenue of possibilities for me. The trip was worth any of the frustration that came with it because now I know how strong and independent I can be if I’m forced. Oh, and because of, you know, someone named… Gaga?

Independence is key to this whole journey, y’all, and I’m gaining more of it every single day. 

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