Esther Tela Free speaks

You woke me up

I turned 21 Feb. of 1995 and quite a few of my friends were underage. I hung out with a large group of people that ranged in ages.

I even hung out with a sister and brother who would sometimes fight when they would come to my place. Never trust those redheads. Those two people made a big impact on my life. I had never been friends with a brother and a sister before. Both redheads too of course. She was your typical suburban college girl and her brother was a stoner. He was also disabled. He had no muscles in his legs and to this day it’s because of him that I don’t hate myself completely. I also had never seen a brother and sister hate each other so much. It eventually got to the point where I would have two separate crowds of people at my house because of this sister/brother combo. The brother’s crew was part of the stereotypical hippie crowd who had stickers all over the back of their cars, they drove around and smoked pot and talked about the Grateful Dead trying to ‘outdead’ each other. I’ll get into a story about that another time

His sister was one of the coolest chicks I’ve ever known. I was a tomboy and had lost my girly princess side when I knew her so she was like a vision of makeup and padded bras with sparkly things on them. She was also part of the stereotypical college frat/sorority circle of people who drank beer and talked about each other behind their backs. Even she had the stoner couple in her crew. Those two could have taken me to my first phish show but I stupidly said no and went for the boys and the Grateful Dead which I do not regret

I had the only apartment in my circles of friends and so for most of my months living there I was not alone. People would stop by at all time and people seemed to genuinely like me. I even started hanging out with a few girlfriends from highschool and they would come over and hang with the other two circles of friends. It was one of the first party lives of many that I have had in my lifetime. I hope you all party like rock stars for the rest of your life like I want to.

I Digress.

After having such a tough time making friends before college I was very thankful to have such a large circle of different kinds of people who were all somewhat supportive. At this age I was healthly. There were no serious signs of the A.S. and even my thyroid was under control, unlike now. I was a healthy beautiful 21 year old blond college girl living the best part of life, the part after moving out of the home you grew up in. I

You an almost think, that you are seeing double, on a cold dark on a spanish stairs

My apartment was behind a Denny’s and that was just the straw that broke the camels back when i was looking for a place to live. When we would get the munchies and had skiied all day long, we all would run down the stairs and jump into the snow. Jump in my jeep, warm it up, in negative 50 degree windchills, and drive 500 feet to the Denny’s for an all night smoke and coffee session. The liquor and beer store was across the street fromthe Denny’s which made the party apartment just east of the central part of town.

Oh to be in the land of coca-cola.

We celebrated every birthday that year at my apartment. Everyone got a cake and balloons, even my own mom. I still have the picture of her blowing out the candles in my kitchen. I had finally settled down, or so we both thought. Every occaision was occaision enough for a keg in the bathtub and a nice round of truth or dare.

Suddenly, Everything’s gonna be different, when I paint my masterpiece

By the spring of 1995 I took these brand new wings of confidence that had sprouted in the tender care of all my new friends and began to spread my roots into the ground and wave my branches out to those who were offering friendship.

Forgive, I’m not sure I could, they say time heals everything, but I’m still waiting…

I had moved into this apartment after finally leaving an abusive boyfriend after being with him for 2 years. It was actually the second apartment. I had to leave the first one because he knew where I lived and I figured I might be a little bit safer if I lived closed to the family and in an apartment that he didn’t know about. It’s hard sometimes for me to think about those times, but thats for a reason. I think theres enough room in my brain to not deal with that time of my life right now and so I wont.

Ill keep payin, I’m not ready to make nice, I’m not ready to back down, I’m still mad as hell..

And I’m still waitinThat apartment still had somewhat of a dark cloud hanging above it and I eventually left with almost 4 months left on the lease. I paid off the rest of the lease and moved out west with a roommate who was using me for all I had. Both emotionally, mentally, and fiscally.

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November 3, 2017 Posted by | 1995, 1996, grateful dead, Memories, michigan, music, red heads, Stream of Consciousness | , , , , , , , | Leave a comment

Hockey, shopping, and Percy Jackson

YAS another fight! I finally am catching an NHL game (hockey has been a passion of mine since I was in high school and got the luck to either catch a live Detroit Red Wing game and/or get the assignment to be the student athletic trainer for my high school hockey team). I may though, now that I think about it, have started playing pond hockey around that time as well. I did take ice skating lessons as a kid but my stage fright was so bad that when I was asked to perform in a show, I said no way. The lessons stopped shortly after that but getting a hockey stick in my hand and skates on my feet, with the freshly blown snow forming a rink for us to play on. I didn’t get to play as much pond hockey as I would have liked. I don’t know why the guys didn’t invite me more. Only thing I can think of is that I’m a girl.

There are bad memories around the hockey team too. One of my biggest downfalls came from the hockey team. A trip that was taken, things t hat were thrown in a cafeteria and a rumor of a car into a wall is about all I will say about that part of my life. It’s in the past and I’m trying to live hour by hour. Day by day and a little bit in the future and it’s much more fun and exciting then living in the past, which you can not change.

THe only constant in life is change.

Step out of your comfort zone.

I did that today. I went downtown and met

Oooo another possible fight in the game.

I remember skating in the K’s backyard. I knew the boy from the hockey team and met the girl, who was an ice skater through him. She invited me over to skate and I had such a blast. I grew up on a lot in a subdivision that had a hill. WHen youd throw water on the snow, with a bmp at the bottom, it was fun as hell to ride in your snowpants. It’s nice to remember good times instead of bad.

My memories are starting to filter back into my brain. I remembered this past week that I ran sound and lighting at the building I used to work at. I did it almost daily. Sometimes dealing with broken microphones (wireless mics SUCK) and lights that didn’t come on or would not turn off. I still am in disbelief that I forgot years of my life. Is that normal? To forget a job you did so much? I guess I did block out the end because my anxiety was out of control when JJ was let go. Or downsized. Or I don’t know what they did to him, but I still think of him an awful lot. He was a big positive force in my life and I am hoping that he is still aroundn town somewhere and is happy. Welloff to do some reading.

November 2, 2017 Posted by | anxiety, Athletic Training, high school, Hockey, Memories, Uncategorized | , , , , , , , | Leave a comment

Cry for resolutions…

So I made an offer to my soon to be legal ex-husband and he accepted. I knew he’d go for money because that’s just how, well I guess I know who he is now. I know he’s moved on and so have I and that’s where that stands. I’m beyond happy that I won’t have to face him in court and talk about the negative aspects of our relationship. It’s somewhat cathartic to clean out the Magic Room, or what is the storage area of this house. The house I’ll soon be leaving behind. I have found a couple condos that I like in an area a bit further out of Portland and I’m ok with that. Even if I’m still interning when I move (with the way my life is going, I may not be doing the same thing Im doing now, in the next 48 hours.

EJR will be leaving my house soon and for that Im positive. We won’t have a burned bridge which is what is most important to me. We are learning each other and while it would be nice to keep him as a roommate, he’s just too bad of an influence on me. I love ya ER, I really do so dont get upset. We just will do better as friends who see each other outside of the home.

The magic is still there. T

Something never comes, never leads to nuthin
Closer to the prize at the end of the road.

The Bliss is still there too. But its definitely not as active as it has been but I have a feeling that’s because both of us are busy with our current lives as we try and make it so our paths cross. I had deeply been hoping that TGD would bring him to me, but it doesn’t look that way. I guess I won’t pack the red dress. I guess I’ll start throwing my energy towards making the Aus trip happen. I can kind of let down my guard a bit too knowing ill be around P family. It seems as though they are deeply helping me and for that I’m eternally grateful and would do anything for you guys. I hope I get to say thank you to each and every one of you.

I hope Im not disappointing too badly with my wght. I know I haven’t been keeping up and today was another bad day. I came so close the other night, but ER is such a bad influence and I have a hard time saying no. Ill try really hard tomorrow as it is a new day.

I miss you. I really do. I hope to see you soon. THe other night. At ASP I know it was you. It was wasn’t it? If it wasn’t, I’m definitely confused.

The sky is a nieghborhood
Keep it down

Im getting more and more memories back of my 5 day break from reality. It’s nice to know I had some sane moments

_____________ break for a few days…but I’m back…

Nobody else will be there

I know I’m supposed to live in the moment and I do. I definitely look forward to each new thing I am learning. Like today for example. I may actually now know how to plug a mic into a wall box that leads to pro tools. Open up pro tools. Make a connection on the patch board, and even patch in a compressor of your choice. I think I could actually recreate all these things If I wanted to and that makes me happy. I really enjoy working with audio and i really enjoy working with computers. I just need to find the right job and I have faith that will work itself out as I learn. I am so thankful to the engineers and owners of The Hallowed Halls, the recording studio that took me on just a few months after I left my ex.

___________ break for something else

There is sunlight shining through
There is comfort here

I still feel like I have some sort of brain thing going on. I get flashes of my old intelligence and then there is the fact I have to have repeated 20 times before I remember it. Im trying so hard to be good. I really am. Im just anxious and scared but confident and happy all at the same time. OH crap. I have a therapy appointment and coffee tomorrow. All things that can make the anxiety trigger. Being in public. Im reading a book about a young girl with anxiety. and im definitely reminded of myself at times. Strangely the book isn’t triggering me. I guess maybe Im rooting for her to get better in hopes that if she can do it, I can keep doing it.

Im hoping to hear from my lawyer on Thursday telling me that KM received the paperwork and had signed it and it’s in the mail to the judge. I just want to go abroad. I really do. I want to hangout with Leo. I want to see Vienna. I want to experience the first ever Priest show. I want to watch NN play with In Flames and then maybe hop a plane to somewhere else. I would love to just hop around the globe, but I don’t want to do all of it alone. I’m hoping the friends I’ve made through Ghost will be as kind and loving as the phish and dead fandom friends that ive had for a multitude of years. I’m really glad facebook exists sometimes because it’s incredible to wach their kids grow up. It’s wonderful watching your friends wish their families happy birthday. It makes me flash back to high school and being in their homes spending the nigiht after sleeping out for tickets.

SIde note:
That’s how it was done back then, in the early 90s. You would sleep in your car, in the parking lot of the venue. In this particular memory the venue was the Palace of Auburn Hills, and the show was The Grateful Dead. I remember trying to sleep. I remember the bright lights and the happy people. I remember going from the car to the lobby in the morning. ANd i mean it was morning, WAY early morning. The people working knew we were a good crowd. It was pre-95 negativity. Everyone was always smiling as they exited. There were scalpers back then, but not the way it is now. I think maybe one or two paid someone to wait in line.

I am really looking forward to Thursday Im gonna ask if I can mic an acoustic guitar.

November 1, 2017 Posted by | anxiety, deadhead, Dreams, grateful dead, Memories, positivity, reality, Stream of Consciousness, Uncategorized | , , , , , , , | Leave a comment

5 days i lost..or found?

i lost track of about 4 days when I took off walking after parking my car near what ended up being MLK and I think Ankeny in SE. I dont remember right now what venue David was playing at but I do remember texting him that I was on y way. For some reason I parked the car and decided to walk to his show that night. I may never know what exactly happened. I keep a plastic bag with things to remember that night with. Some happy memories like the dance studio and walking into that bar where every smiling face made me feel happy. I didn’t feel any fear. I felt acceptance and they knew who I was. That is what Im aiming for. Yes, the Bliss that you cause, well that would be the cherry on top of the cake. Being around all of you, you know who you are, is what I want. Like be good familiy. That’s what it was supposed to be about in my head. I wanted that utopia that Woodstock seemeed to have been but of course if you were really there, you don’t remember it.

Some days I wonder what I have done to deserve the pain that courses through my joints at times. After sitting for about an hour and ahalf while going through my previous years hidden stories, sitting on old couch cushions, i could barely move. My body locks up and the joints scream at me and I can feel the inflammation around the joints. I can literaly feel the ball of the femur entering the sacrum. I think it’s the sacrum. My memories of the anatomy that I took at least 3 times still escapes me at times. School and I never got along.

I had to get to Coldplay. What happened after Coldplay, or even before, is another something that I may never be able to talk about. I remember falling. I remember lsoing my sock and shoe and I remember stnding on a street corner where bicycles would pass to my right. The buses and cars would pass in front, and I would just turn like I felt I was suposed to turn until I got so tired that I collapsed. Next thing I know there was a woman cop standing there and I wasn’t scared. I hadn’t been scared for most of my walk. I felt like I was on a mission. I didnt know what the mission was but I was ok. I don’t remember sleeping. I don’t remember eating and I dont remember drinking water, but I must have. Oh wait. I just got a flash of a coffee shop.

I was sgiven a choice as I left that coffee shop. One timeline or another and I went with what my heart wanted.

October 23, 2017 Posted by | anxiety, chronic pain, Dreams, Memories, pain, Stream of Consciousness | , , , | Leave a comment

All these things that I have done

Its hard to look back and see the progress when you are in the midst of a change.

April 29, 2016 I was taken to the Adventist hospital in the midst of liver, kidney and respiratory failure. They couldn’t take me which I find really ironic when I pass their billboards that tout how wonderful their ER is. Instead I ended up at Kaiser in Clackamas county. I should have stayed in Portland, and I will regret the fact that I had no say in my treatment or where I was taken and that once again my ex-husaband made a decision that will have repurcussions to my dying day.

That isn’t the focus of this post though. The focus of this post is to remind myself how far I’ve come from then. See, when I was taken into the hospital I weighed 335 pounds. All my life I had been called fat. People would yell ‘fat ass’ out the window of their car when I would walk down the street.. On the phish (that band from vermont that some of you might know) newsgroup rec.music.phish (newsgroups were the precursor to Facebook groups I suppose). But the difference is there was absolutely no moderation what-so-ever. It was the wild wild west of communities and I was a pretty well – known poster as I had either a job where I could be online all day, or I wasn’t working so I spent almost all day, every day online posting about Phish. I somehow gained a troll (i would find out later that it was a large group of people acting as one signle troll) who would write stories about me eating people. And make fun of the fact that my health had deteriorated into me needing a wheelchair just to go to a live music concert. The bullying continued into my 30s until I eventually had to leave that internet community that I had thought was accepting of all people but would actually be one of the most creul and unforgiving communities I’ve ever encountered on the internet and I’ve been part of an online community or two, or three for over 22 years now.

I digress.

Now, I’m 100 lbs down. Yup. I’m outing my weight on the internet. I weigh 235 pounds. And I wear a size 12 in some clothes and in others I wear a 3x depending on the manufacturer of the item. How on earth is anyone supposed to feel normal wearing such an array of different sizes? Epecially in a society that places so much value on that damn number. How is anyone who is self-conscious in any way supposed to live with themselves and their weight when our clothing manufacturers won’t even give us a regular size. Now guys clothing is measured in inches. You know the waist size. You know the length and that is the way it is no matter who makes the clothes. Talk about a punch to the face. To me it seems as just another way to control us.

I digress again.

I decided a few months ago to let someone move in as a roommate. I let him stay for free for a few months. I wanted to see how we got along. I wanted to open myself up to a new person. Well that fell apart the other day. I no longer felt safe with him in the house and had to run. I had to walk down the block, call for a Lyft and go pick up my car that had been impounded when I suffered multiple anxiety attacks and memory issues relating to the PTSD and anxiety that I can now trace back to my early childhood. That brings me to mom. A mom Who decided to tell me that because i pushed away this roommate, that meant I had no friends. Never mind the 15 messages on messenger that I recieved when I let people know I had to create a whole new fb profile. It’s amazing what the internet does to people. For people like me, it can destroy them with just one sentence. For others, like zev for one, or Bee for another, and even darryl yes, I know you are all behind things. I know there are others involved too, but that won’t last forever. Karma is a real thing. A very. real. thing. And you’d better get ready to face YOUR demons because I’m facing mine right now, every single day when I wake up and I hurt. When I sit for 15 minutes and can barely move after that 15 minutes because the stiffness is so bad.

I have digressed again.

Honestly I guess I’ve lost focus on what this entry was supposed to be about. I guess it’s about freedom. The freedom to be who I want without my mom telling me that I have no friends. When I disappeared a few weeks ago due to some circumstances almost completely out of my own control, I was found with one shoe and sock and a bare foot on the corner of Division Street. The police found me, put me in an AMR ambulance (mind you this is the 2nd or 3rd time these wonderful folks have, oh wait, it may even be the 4th time that they have come to my rescue when it’s been a life-threatening situation). See, I suffer from, wait again, I don’t like to use the word suffer. I have anxiety (and PTSD) and Im despartaley trying to control it without relying on medications.

There we go. It’s out now. I have PTSD from an alcoholic father and a controlling mother who wants nothing but to dangle my strings in life like the puppets in a kids theater. It’s from the bullying that began in 3rd grade that continues to this day when I went to the Coldplay concert and I realized that SOMEHOW, some of these people KNEW that popcorn was a trigger. Somehow they KNEW the things that triggered me to have a panic attack. I may never know how that was the case. I will just continue to look down at the love button that some of you may have recieved if you were at that Concert. From what I have been able to glean, not everyone got one of those buttons.

She told me this morning, after I had called her to let her know I was safe. She told me I hard pushed away the only friends I had. Because I didn’t let this man, a person I did NOT feel comfortable with, stay living in my home. She didn’t believe me that I had been able to procure my car from the impound lot. She just sounded pissed. After being missing for a few days, maybe even a week total, Then reappearing. Then disappearing again, she was pissed. WTF mom. What. Is. Wrong. With. You. You didn’t teach me how to handle my emotions. You came from the school of push those emotions deep deep inside and dont let anyone see you cry. Not ever. There’s no crying in baseball afterall.

Needless to say, this posting has jumped all over the place. I started it because I’m going to try and lose another 50 lbs and today I downloaded an app to keep track of my calories. That’s how I lost the first 100 lbs. I found out how many calories I burn at the weight I’m at and then I ate less. I didn’t even excersize. I am doing bother now. It’s different now though because I have a goal. I want to tour with a band. I want to find a band that will take me on to help them in some way. Whether it’s to drive the van, or even just make some home cooked food while at the hotel. It may be a pipe dream, but it’s my dream. And i’m going to keep fighting to make that dream come true.

I started watching a youtube red documentary about Lindsay Sterling tonight. The dancing violinist. I had never heard of her before, well at least not that I can remember and she is someone that I admire greatly. She is fighting a food issue just as much as I am fighting one. (She’s also facing the death of her father which is something I dealt with at the age of 21) I have a tendency to eat my feelings. When I’m sad, I want pizza. When I’m happy, I want pizza. I would eat pizza for every meal of the day if I could. And trust me, I have before, for months at a time. That was how I got up to 335 pounds. I was stuck in a loveless marriage that had died right around the day before our wedding in 2004. Don’t get me wrong. We had grand times. But I had followed in my mother’s footsteps and found myself in an abusive relationship. I can’t go in depth into that part of my life until the divorce is final. I will get into that one day though. So keep an eye out on the blog. I finally got out of the marriage a few months ago and the moment I recieved that restraining order my life began down a path that I am happy to say is probably some of the best times I’ve ever had. I have hope that the next few days will cement a future. A future that I have been dreaming of. Some of that will require hard work. I used to walk almost every night. But I slacked off. Gained some weight and today I put myself back on that path to getting healthier. I really do love green beans! I really do love tofu. OMG a tofu scramble? Yes please! Scrambled cheesy eggs? Yup. Throw me that protein. I’ll eat it.

“it’s time” as the announcer before an MMA fight would say. It’s time for me to start the rest of my life. And I hope that includes you” I may have even prayed that it would include you.

Oh I forgot to mention one thing. I exist in pain. Chronic pain. It hits when I least expect it. No one’s ever been able to tell my why. I just have come to accept it. After 14+ years of controlling it with opiates, I have moved forward to handling it with alternative treatments. Yoga. A TENS unit. Just plain ole fashioned grit and determination. So if you know who I am, and see me walking down the street on your neighborhood (sometimes its a button that says I heart nerds, sometimes its a button with a smiley face and a bleeding head wound and sometimes it’s a “love” button) remember that what you do, in those moments when you pass a stranger can sometimes last a lifetime. That person who yelled ‘fat ass’ out the window at me in Birmingham, Michigan has permanently damaged me and I’m betting he is proud of that. I have faith though that Karma will bring everything into balance.

Change. The only thing that’s constant in life and in reality and I’m in the midst of a big one. Watch out world. This wily fox is on the hunt, on the prowl and is ready to take on the world. And I will gosh darnit. I will.

October 10, 2017 Posted by | abuse, anxiety, Changes, Dreams, Internship, Memories, MOF, mom, pain, phish, reality, RMP, sickness | , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , | Leave a comment

Memories 

Some good, some bad. They come back at all times. Recently the bomb has been invading my thoughts. That’s right. Bomb. A homeade one yes, but one that blew up none the less. I was 17. Junior year. I think at least. It was warm and the fan was the window (in the memories of that time, the fan is ALWAYS in the window) and something woke me up and I looked out the window. By this time in my life I had been bullied inccessently by my classmates. I was petrified to go to school and even home wasn’t safe. Cars would drive by late at night and flash their brights in the window. I was a mess. I must have already had anxiety at that point because I was always worrying about everything. I digress. I heard something that made me look out the window and I saw two guys walking towards the house. I was able to see them put something right by the door and of course I was curious. Maybe someone was actually being nice to me? I always tried to be optimistic and I’m glad I have not lost that in the 4 decades I’ve been alive. I walked down the winding stairs towards the front door and suddenly there was a loud bang and my mom started yelling. We both went to the door and opened up and there was black soot and exploded pieces. I was horrified. I know my mother was too. This was back in 1991; pre-911. If this had happened now, the kids would be in trouble. See, my mom went to the school and told them what had happened. I had seen the guys who did it. I knew who it was. In fact, one of the guys had a class with me. My mom wanted something done. I’m sure you know what’s coming. The school did nothing and every day. Every. Damn. Day. I had to look at this guy who put a homeade bomb on my porch and be scared knowing that they could get away with anything they wanted. If they could put a bomb on my porch, what on earth would they do next? My horror and fear of people has to stem in part from this experience. 

April 11, 2017 Posted by | Memories | , , , | Leave a comment

Man it hurts

I’ll go into it more, but today has been the most painful day I’ve experienced since my father committed suicide. I cried for 20 minutes straight in the car. I know I’m not alone. I know there are a crapoload of you out there that care and are rooting for me to get through this. That doesn’t take away the pain though. I just keep reminding myself that this is temporary and with the bad, comes the good. I am really lookin forward to the good parts.

April 7, 2017 Posted by | anxiety, Memories, reality | 1 Comment

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


I spent 7 days in the hospital. 3 of them in the ICU. I had a tube down my throat and was given narcan to combat the opiate withdrawal I had to go through to put me on the road to recovery. As the fourth day came around. I was somewhat used to the early morning intrusions to both my skin and my sleep. Late morning rolled around and the physical therapist came by. She wanted me to walk down the hall. I was on oxygen thanks to the respiratory failure caused by what I guess is the liver failing to clean out the opiates on my system so  depressed my breathing. I expected to have no problem walking but as the woman pulled the portable oxygen tank around to my right side, I swung my legs around and slowly put weight on them. It was a shocking surprise to find myself very weak and scared at the same time. I stood up, wobbled a bit, and gathered myself to make that first walk. Before this hospital stay, I walked from my bed, to the chair, and to the bathroom and that’s it for the day. I couldn’t draw those clocks. I was fucked for the rest of my life I had thought. But getting clear if those opiates, I knew immediately that I had a second chance (or is this the second?). I walked about halfway down the hallway, turned around and walked as strongly as I could and when back at my room, I collapsed in the bed in relief. This was going to be hard.

The day passed and so did another one. Mentally I was recovering faster thaen physically. I had been misdiagnosed with an auto immune disease and treated with steroids, nsaids and opiate pain medications.

I woke up on that last day in the hospital knowing that it would be my last day. I had been on furosemide to help flush out my kidneys after they failed and was finally off of them. They are not a fun drug. They make you urinate numerous times an hour, but is necessary if certain organs aren’t working correctly. My last dose had been the day before and my last test would be to do the stairs. I’ll admit it now. I was scared to death to attempt them. I was not only weak from the 6 days in the hospital, which causes you to lose a large percentage of your muscles, but I was recovering from years of complete inactivity due to weight gain, depression and anxiety. Along with having to try and walk and climb stairs, I had to work out a plan to get durable medical equipment from a company somewhere in the city,

April 5, 2017 Posted by | anxiety, death, fibromyalgia, Memories, Misdiagnosis, MOF, pain, sickness | , , , | Leave a comment

MOF…

I went to my first concert as a young child. The first concert I chose to go had a boy band wearing matching shirts playing to an adoring crowd of prepubescent girls screaming their heads off. Months later I found myself at a heavy metal show that would be my foray into not pop music which would be my salvation. 20 years of following phish around had slowly eroded into the incapacitated state I found myself in when the organs began to shut down and my breathing became compromised.

I spent 7 days in the hospital. 3 of them in the ICU. I had a tube down my throat and was given narcan to combat the opiate withdrawal I had to go through to put me on the road to recovery. As the fourth day came around. I was somewhat used to the early morning intrusions to both my skin and my sleep. Late morning rolled around and the physical therapist came by. She wanted me to walk down the hall. I was on oxygen thanks to the respiratory failure caused by what I guess is the liver failing to clean out the opiates on my system so  depressed my breathing. I expected to have no problem walking but as the woman pulled the portable oxygen tank around to my right side, I swung my legs around and slowly put weight in them. It was a shocking surprise to find myself very weak and scared at the same time. I stood up, wobbled a bit, and gathered myself to make that first walk. Before this hospital stay, I walked from my bed, to the chair, and to the bathroom and that’s it for the day. I couldn’t draw those clocks. I was fucked for the rest of my life I had thought. But getting clear of those opiates, I knew immediately that I had a second chance. I walked about halfway down the hallway, turned around and walked as strongly as I could and when back at my room, I collapsed in the bed in relief. This was going to be hard.

The day passed and so did another one. Mentally I was recovering faster then physically. I had been misdiagnosed with an auto immune disease over a decade earlier and treated with steroids, nsaids and opiate pain medications.

I woke up on that last day in the hospital knowing that it would be my last day. I had been on furosemide to help flush out my kidneys after they failed and was finally off of them. They are not a fun drug. They make you urinate numerous times an hour, but is necessary if certain organs aren’t working correctly. My last dose had been the day before and my last test would be to do the stairs. I’ll admit it now. I was scared to death to attempt them. I was not only weak from the 6 days  in the hospital, which causes you to lose a large percentage of your muscles, but I was recovering from years of complete inactivity due to weight gain, depression and anxiety. Along with having to try and walk and climb stairs, I had to work out a plan to get durable mnedical equipment from a company somewhere in the city, My O2 stats were low and they were requiring me to have oxygen when going out of the house.

March 17, 2017 Posted by | anxiety, Memories, Misdiagnosis, MOF, music, reality | | Leave a comment