Esther Tela Free speaks

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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….

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

Reality hits me in the bum

Reality hit me in the face when I found out who’s really behind it all, behind ‘the stalker’. I never in a million years would have expected it to be who it is. And of course they are so low and so obsessed to have even found this blog which isn’t even easy for ME to find. Let me catch you up to date. For about 3 and a half years I have had a stalker online.  It started on rec.music.phish where I was a well known poster and then followed me no matter where I went on the internet. Every new name that I was use, they would find out. I used to think it was one person, found out a few of the people it was, but now, it’s different. One person is doing it and we have been able to use ISP’s to find out who it really is behind the whole thing. This person was someone that I trusted and know well from Phish tour. In fact Ive spent hours with this person and it’s amazing to me what double sides people have. My good ole husband was WAY ahead of me and had it figured out before the IP addresses proved who it REALLY was. The great part about all of this is I just dare them to try and find me again and try and post horrible things again.  They will, I have no doubt. The great part that I was just talking about, I finally figured out that it’s funny to make fun of people with diseases on the inside and it’s even funnier to make fun of fat people. Not, but that’s what they were doing to me. I mean don’t get me wrong. To these people, being fat and having a diseas that has no physical symptoms besides weight gain makes me a target about as funny as John Stewart on a good day. I don’t care anymore and this shall be the last time ‘the stalker’ is ever spoken about and hopefully the last time it’ll be in my brain. I’m puttin’ it in a folder and into the locked file cabinet of my brain of things int he past. It’s time to move on for all of us. I know you are reading this stalker. Just stop it. You will have so much more time for yourself. And it ain’t workin’ on me anymore so either quit, or find a new victim. Hopefully one that catches you before the end and can prove what a complete and vile asswipe you are. You have done nothing but heap lots of bad karma upon yourself and it sounds like it’s starting to kick in. Have a fun ride on the way back down.

June 18, 2007 Posted by | ankylosing spondylitis, e-friends, hubby, karma, phish, reality, stalker | Leave a comment

Dreams , beams, automobiles

I really wish that the holes in my memory would start giving it up. While talking to the hubby yesterday I wanted so badly to tell him a story that involved me and someone else and something that happened years ago but I could only remember an outline of the stuff and I told it as best I could. Didn’t sound as great as I  had hoped and I wish there was some sort of pill to take to help you get your memory back.

A religious ambassador. I don’t know why we don’t have them. I mean what a grand way to help ease the wars in the world right now. Every religion would have someone that speaks for them, and perhaps we could acheive peace in this world but at the same time, I don’t even know if that’s possible.

I’m at work right now, passing time while the boss is on a (ring) conference call. Sometimes I wonder if the redhead thinks about the fans as much as a lot of us think of him. I know my husband and I have both had dreams with him in them, and it makes me wonder, on those same nights, is the redhead having dreams about his fans? Now I’m not saying he’s necessarily in our dreams but I wonder if he himself dreams about being onstage. The story he told, bout the dream that he had involving the apple and the one tooth never really struck me as a real dream, but if it was, man he has fucked up dreams.

One lasting thing from my ‘episode’ of the month of Feb, is the high beams thing. I still to this day am wondering why ‘it’ told me to keep my high beams on. I still want to know who ‘it’ was, and why I knew where to go and what was guiding me. I was never scared and I hated it that I scared the hubby. I wish he could have felt what was in my heart that night. I felt elated. I felt light as a feather. I felt like I could do anything, save someone’s life, something really dramatic. I felt that I could save the world that night if I needed too. Sometimes I wonder if all I really want is to just be loved for the rest of my life and if that’s the case then I’m all set. The hubby is the one, there has never been any doubt, and he loves me perfectly. I have no complaints (except maybe how he never wipes up his crumbs while making toast) but those aren’t real complaints. The best part about my life right now is that I’m ‘livin large’ as me and the hubby have been saying and even though we are still living somewhat check to check, we do not lack anything including love and that makes us lucky in today’s world. I am thankful to you redhead for the music that you gave to us. It also helped to shape our relationship, and I am thankful most of all to you hubby, even though you aren’t going to read this, I am very thankful that you fell in love with me as hard as I fell in love with you. I will love you forever. Promise Promise.

March 27, 2007 Posted by | hubby, karma, love, mt hood, phish, positivity, reality, Trey | Leave a comment

October and Novermber 1995 were months of loss and change

I thought maybe moving to Brattleboro, Vermont was the answer to ease the pain of losing my father. I had the insurance money and I could go and do anything I wanted to anytime I wanted to. I didn’t owe anything to anyone. I figured that I might as well start checking out the rest of the country. I had never thought to having a future in the city I grew up in and so I figured this was my time to start taking my money and traveling with it. I’m not quite sure how Vermont came into the picture but it did .I met Heath in the Grateful Dead chatroom. The internet was still pretty new to the average person like me at this point. I had just gotten a computer in August and found a whole cyber world of people who liked the same bands that I liked.   At this point in my life, I was a hard core Deadhead.  Lucky for us, after Jerry dying, there was a need for all of us to be together as much as we could be. There were festivals in just about any state during the first three months of a Jerry-less world. Thankfully for us newer deadheads,  The Grateful Dead had their own forum on America Online.  This was the early days of AOL. YOu didn’t pay by the year, you paid by the hour. I can’t even count on two hands the amount of fake screennames my friends and I would use in order to not pay AOL because paying by the hour, when you are a mourning deadhead in a chatroom of deadheads is not one of your top priorities. I remember people having hundreds of dollars of bills every month. Needless to say, the Aol dead forum was where I lived those first three months after Jerry died and that is where I met Heath.  He was a hippie kid, like me, who lived in New Hampshire, just outside of Vermont. We decided to hang out in real life and possibly get an apartment together  in Brattleboro.  I packed up my backpack and hopped the greyhound bus to meet with Heath and spend a couple weeks looking for an apartment. If everything worked out ok then he would come back with me, help me pack up my shit and then help me drive the UHaul back to Brattleboro.

The greyhound bus motored up through the mountains and I gazed at the beautiful fall leaves of western New york.  I ended up in New Hampshire where Hearth was waiting to pick me up. The bus pulled up at night time to this small building with 2 plate glass windows and a plate glass door that opened up as the bus pulled up. It was this tall skinny guy wearing a knit hat with a ball at the end the swung as he walked towards me. He was also wearing dark brown cords and a very thick sweater in dull colors based mainly in the maroon color wheel. I came down the steps of the bus and Hearth was nice enough to give me a hug.  We weren’t there as  a couple and in fact this was the first time we were meeting in person. In 1995, meeting people off the internet was not a common thing. I usually had to lie to mom when I would tell her where I was going and who I was going wtih.

Heath’s parents were kind enough to host me for the 2 weeks we were taking to find the right apartment. Heath and I spent days searching the apartment ads in Brattleboro and scouted out the grocery stores, music stores and other various small shops that generated most of the business in the economy of brattleboro.  There were plenty of kids like us. We had no problem finding people who had things in common. After seeing a picture of Phish playing in Brattleboro around the same time I almost moved there I to this day still wonder what would have happened if I had gotten into phish in 1995 because I had moved to brattleboro.

Coincidently phish just released a new livephish download from december of 1995. I am listening to that while I write this story.

Back to the Vermont story:

We spent quite a few hours in the music shop and I ended up buying an accoustic guitar. I really wanted to learn how to play it and figured that at 21, I was still young enough to pick it up. Eventually we found the apartment that we felt most comfortable in and placed a downpayment on it.  It was the second floor of this cool house. It had a very windy short stairwell (which would mean lots and lots of fun carrying up our belongings). I knew that we were going to have the times of our lives living in this place. There were so many nooks and crannies and the place was definitely big enough for the two of us to have our own separate lives as there was never a love interest between the two of us. After finding the place, we headed back to his parents house, packed up my stuff and I returned to Michigan with Heath in tow. It was impossible for me to move an entire apartment without help and I just couldn’t find anyone who was willing to help me move, including my future roommate.  All i needed was help moving boxes and here i was seeing what my roommate was made of and it seemed like he wasn’t made of much. I decided this was a trait in a person that I was not willing to look past.  I really wanted to move to Vermont. I wanted to start my life there. But when I saw what kind of person Heath was I sent him home about 3 days before the RV rental was to be picked up.I returned all the money he was owed, and I decided to stay in Michigan.

March 24, 2007 Posted by | 1995, America Online, AOL, brattleboro, greyhound bus, new hampshire, phish, vermont | 1 Comment