November 2002 rediagnosed with a recurring tumor I am going to bring you through the whole fun thing
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This is where you stick random tidbits of information about yourself.
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Brain Tumor History And Other Rants
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Tuesday, September 23, 2003
Things continue to evolve and change in my asylum I call a mind. Lately I have been wrestling with trying to get back to work now that the “labor intensive” part of this misery is over. This has been racking my mind a bit. I mean they aren’t going to let me behind the wheel of a car anytime soon. Everything I want which is to get back to having freedom in my life is not here with me. I have gotten my doctor visits down to once a week. That is pretty liberating. Things change and evolve with this whole condition. In the bat of an eye you can think you are 2 steps forward only to realize that you are still at the star square on monopoly, and you are never getting the dice. I have been making car payments, and insurance on my car all year. I haven’t driven it since December. Payment $370 insurance $120, that makes 5 bills a month to support a car sitting in my driveway, and the only safe way for me is on 2 feet and even that is questionable.
Last week I actually took the mountain bike out for a ride, which inspired me to clean the dirt and grime that has built up over the years. I pulled the tires, cleaned between the sprockets type of clean. It looks good, and has taken some abuse. I was thinking about trying to get back to work, make it through the winter. And in the spring see where I am at, to see if I need to adjust my life, like if I was free to do as I wished. I would buy a bike and move to a better climate, sunny all year little rain. But life isn’t working out any way that I wanted it to. So we all know the adage that life can change in a blink of an eye.
Friday we were in Shop Rite getting the weekly necessaries together. I was rolling the cart past the Entemans cakes, you know the rack that no one needs to buy from but we all do. BAM, my left side of my face starts twitching. I move towards Mo “Sei, Sei, S”, this is it, it is actually going to happen in public, twitch twitch twitch. One of my greatest fears has come true, twitch twitch twitch. I ran towards the bakery display, I just kind of wanted to hide somewhere, tick tick tick. This is another thing I have also thought about, where can I hide if it hits tick boom boom. So I got down to the floor and things just went out of control from there. Boom boom boom boom as it twitched my entire face, and I thought to myself, St… St… St… Boom boom boom, then it lulled a little, tick tick tick, I am thinking ok I am coming out. Then my hand got into it. So I think maybe trying to say stop is not helping boom boom boom. Behind me and above me I could hear people talking, boom boom boom.
“Is he alright?”
“Yes he gets these all the time” boom boom boom
I mean hey you just want people to know nothing major is going on, I am just not in control of my frigging body. Boom boom boom
“Can we get him anything?”
“Do you need anything?” boom boom boom. Try a new brain!
I want to turn over to see who these people are but I can not control my body. Boom Boom Boom. This is going on for like 2 minutes right here on the Shop Rite floor.
Then finally, release I rolled towards my back and said,”Dun”
“I’m o hey”
Hey talking is really slurred at this point.
I can’t really feel my legs or my left arm.
Mo was holding me up.
“Relax”
“Don’t worry”
Easy for everyone else to say they are all walking and talking.
I made a plea to let me get up no one thought this was a good idea.
Probably better off I don’t think I could stand. Someone showed up with a blanket, someone else with a cup of water. Then someone else with a bigger cup of water. The only joke I could think of which I kept to myself was, does this get me free groceries?
Someone then rolled up the wheel chair cart. How old am I? I feel like grandma now. I don’t know who but they helped me up into it. So now I was sitting up. They gave me water to drink. I was shaking so much I couldn’t hold the cup. The manager of course doesn’t want me up and about, he suggests we use the wheelchair cart. The cart section is as big as a basket that you would carry in a store, of course this isn’t going to work. So I told Mo, to bring the basket over and I would use that to help me walk. She brought it to me and I stood up. At least I could hide the fact that I was using a walker with this thing. My left arm was numb and my left leg was kind of lame and dragging along with me. It was quite shitty. Mo was helping me steer because I was turning left a lot I think, I really couldn’t feel myself so I didn’t know if I was pushing or not. We went got some meat for grilling. I have a pretty good case of the dizzies at this point also. I just have to keep in mind that it is me spinning and if I hold hard enough to the cart it is not spinning, although it is on wheels. We went up the cereal aisle I went to grab a box or cereal I stuck my left arm out to grab it, and it just hung out there, the hand didn’t grab. Hello these are things we don’t even think about, there’s the box and you stick your arm out and the hand does its job. Well not the case on Friday, so I reached over with my right arm and grabbed the box. These are the times that suck.
So we make it around the store, I make it up to the register and now I have to put all the stuff on that conveyer belt. I put my price plus card in my left hand. I of course couldn’t feel it there so I dropped it. Great I have to pick it up off the floor.
Hey anyone want to take me food shopping now?
This is my so called life. And I want to get back to work and commute why? Talk about turning my mind back again.
“Just when I think I am out, they pull me back in again.”
My mind is almost telling me, you aint going anywhere if we have anything to do with it. It kills me to think this is it. It is not going to get any better. I am that ticking time bomb that will never know when I am going to go off. No more driving, hell I shouldn’t be on a frigging bicycle. I could forget ever owning a motorcycle again. There was a small window in my life where I was free of this crap, and my own person, the rest of what I have on my undead clock is riddled with “events”. I can’t work independently outside of the house because I am bound to have a fit. I get caught up in thinking about it, and I don’t want to leave the house anymore. I don’t want to work, do anything. It gets you nuts. Do you know what it’s like to be held captive by your body. If you do then you understand. It is a crappy situation. To think that I to was free once but not no more.
12:42 PM
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