Esther Tela Free speaks

You woke me up

Another plug in the wrench was my insurance situation. If you’ve never been chronically ill, you may not understand the hoops we have to jump through in order to get care. The doctor I was seeing worked out of a certain health care system. That system did not give me options such as physical therapy, or seeing any sort of psychologist. Due to the lack of hospital beds the day I almost died, , the hospital transferred me to another hospital in a completely different health system. Because I wasn’t a member of this hospitals system, I had to find an equipment company that would rent me the equipment. Somehow, due to the diligence of my team at kp, I spent the last 15 or so minutes of my hospital stay with a rep from one of two in the city that I could use. The hubby and I were relieved to have me rolled out of the hospital with rather proper breathing machine for me to sleep healthily. I remember sitting in the passenger seat, at dusk, with the window rolled partway down, feeling the breeze on my face and watching the pinkish colored sunset sky to the left of me. We drove steadily up the highway and soon I was home.

I knew, after we got front row, reserved balcony seats for my new favorite band, that I would have to walk up a flight of stairs. The year previous, I had seen ghost at that same venue. It is one of the only hazy memories I have of 2015. I started walking up that flight of stairs and it was so hard and tiring that I was forced to sit between the two sets of stairs. 

Things were bad in 2016. I mean really bad. I was completely losing my marbles. You start to wonder whats going on. I’m not talking about crazy like thinking someone’s in your computer crazy though. I’m talking about how I couldn’t draw a clock. K would say, draw three o’clock and I couldn’t.

I now had a goal to help me recover from this experience. I had four months to get myself standing, and walking enough to park a few blocks away and stand in line, amped of course, up those two flights of stairs that would take me to my coveted seat for the best medicine there is. Live music.

The first few weeks home weren’t easy. My memory was fucked. I would get a phone call and forget what was said. This was frustrating to my poor hubby. He had nursed me from almost the entire time we’ve been together. I was able to some what nurse him when he suffered a diagnosis of congestive heart failure and a subsequent cardiac arrest a few months later but I had not been able to sustain that for very long.

The years I have had to use the wheelchair, prior to my hospitalization, are a mix of frustration and the desire to get my musical medicine without experiencing the major stress that comes with traveling and using a medical assistance device. Unfortunately, at a major music venue in the Pacific Northwest, I experienced one of the worst experiences at a live concert. And I’ve seen one band almost a hundred times and not just in one state. I got to the hotel in the city near the venue and made it to the campground in the rv we had rented. When we arrived at the campground the campground guy did not flag us into the handicapped camping section. He put us up into a top section on a decline and the paths were made of gravel. To someone in a wheelchair that is like saying we don’t give a shit that you are here. That was the first indication that this trip and concert just might not be the experience I was used to having. The day dawned bright, warm and cloudless and I looked forward to having a wonderful time and tried to have a positive attitude. As we got ready to head to the show is when I noticed the gravel and realized I would have to walk. In the condition I was in, that was a hard thing to do. And I was fighting the urge to just crawl up and die. I was already embarrassed enough to be using a wheelchair but I was also fighting a confidence issue as I had gained significant weight as a side affect from the steroids. I got down the hill and waited at the bus stop for the handicapped bus the venue provided which I am thankful for. I was loaded into the bus when it arrived and it was my very first time in a handicapped bus.

I would like to say that all of the other handicapped people that I have met in my concert travels have been wonderful human beings.

As the lift rose up, I rolled into what I thought was the area to be. Now my memory is fuzzy here, either he didn’t strap me in, or I said I was ok, I’m not sure. But what happened next, I won’t forget. The bus driver got into his seat. He pulled the break and the bus slowly rumbled to life and out the gravel road. At the stop sign, there was a small hill and as he stopped, my wheelchair violently rolled forward and smashed into either the seat or another wheelchair in front of me. I untangled myself and rolled back into my spot. As I did that I realized that my wheelchair had been damaged. Wheelchairs are expensive and mine hadn’t been covered winsurance and knowing I would have to order a new one, mine was a special light weight one,I would have to fork over the cash out of pocket too. I compartmentalised the issue and tried to look forward to three hours of music and bliss that came along with live music. We were drive to the back gate entrance and since I was very early and the only wheelchair, I figured I’d be ok, but what I didn’t know at the time, is at this time, they did not have a section for wheelchairs. I asked the security guard about this. He smiled widely, took ahold of my chair and wheeled me right out into the general admission area in front of the stage. The live concerts I usually go to, have rabid fans that wait hours so they can hang on the rail, right in front of the band. I knew this because I used to be just one of those persons. I spent many hours waiting in line at venues across the country. Madison Square Garden in NYC, The Mothership in Hampton, Va just to name two of my favorite experiences. When I was wheeled out to the GA section, there were already rows of fans claiming their spot for the show. I was a pretty meek person back then, and didn’t have the wheelchair experience yet to know I was not in a good spot to enjoy this concert. I had such a horrible time, and felt it was so wrong that they didn’t have a handicapped section at GA concerts that I contacted the state where the venue was located and put forth in motion a lawsuit. I wimped out about it, but I found out years later, when I returned again to give them another shot, they had a wheelchair section and I’ve since enjoyed a few shows there.

Before I got sick, my hubby, who is a music extraordinaire both in knowledge and in dj abilities would try to play different music for me, and I found myself stuck in a pattern with not just my health issues but also in my musical tastes. When I returned home, I found myself drawn to much heavier music than I had in a long time. I also found a new respect for many legends I had just sort of turned my snotty-at-the-time nose up at. Now, I was blown away by the intelligent and soulful lyrics of musicians from all around the globe. Germany, Sweden, and even some of my own fair city’s known bands….

Advertisements

April 7, 2017 Posted by | ankylosing spondylitis, anxiety, death, fibromyalgia, hubby, Memories, MOF, music, pain, phish, reality, sickness, The Gorge | Leave a comment