Getting used to this box (VNS device) in my chest and the scars, the breathing, the thing in my chest that sticks out and is just a bla bla bla. Actually I don’t like it but if it works and stops the seizures then who cares about the other stuff. That is what I keep telling myself as I get used to this thing. It is uncomfortable and a whole bunch of other stuff but I am going to focus on this thing working. That’s what I tell myself anyways. Here’s my latest VLOG with me rambling about it. http://www.youtube.com/watch?v=Xj_7kFWus0k I actually have a new one that I think my son is posting latter today but I don’t know. The truth is I can’t remember anything right now and it is really hinders me as far as accomplishing anything that I try to do. I hate talking bout this stuff but it helps to ramble. Bla bla bla. I don’t know. Maybe it doesn’t help. As far as writing goes I have three new stories that keep creeping into my dreams and I really want to get them out and see what they look like. It is a new day, a new week. Time to make new mistakes.
It has been a rough few days and nights as far as sleep, focus and I don’t now. Time is moving fast. One minute it’s Tuesday then bam, it’s Saturday. We write down on a calendar when I have a big seizure and this year or at least since April they’ve been between the 8-20 or something like that so right now, being in that time of the month. Well, I get nervous. I tell myself no, I’m not going to have one but I don’t know. Whatever. Can’t let it control me. Can’t. I won;t. It will be as simple as that. And I will finish T.B.O.T.E. Book 5. If I can stay seizure free for at least two weeks, and this whole VNS thing isn’t too bad a distraction when they turn the device on (that’s funny cause I’m actually pretty nervous about it) That’s stupid though. Shouldn’t be nervous. Won’t change anything and since I can’t change if I will or will not have a seizure, well, I’m starting something tonight. I need to focus my thoughts and my energy to something else. I am. I will. I’m just pull up a document and see what happens. Why not
A week since surgery
It’s only been a week since surgery so they haven’t turned on the VNS device yet so I don’t know if it will work or however you word that. I will say that my hopes are up that it will. I have done two vlogs or whatever they are called. They are available on our website. http://www.michaeledwardstories.com/ I feel kind of stupid about them but hey what are you to do.Feeling stupid is a part of life that one needs to get over. Another truth is I am getting nervous about seizures. Every month since April i have had multiple seizures between the 8th and 19th. SO as I approach those dates, who knows. Doesn’t really matter. Hoping this VNS device works. They should be turning it on next week. I reckon we will find out. Can’t get worse.
Why do you write
Someone sent me an email asking why do you write. Ouch. Fair enough question I guess. I like to tell stories. Simple as that. My education may not match my imagination but worse things can happen. The truth is my screenplays are better than my stories on Amazon but over the last year’s my seizures have gotten worse (that’s why I just did the VNS surgery) Hopefully that helps. To answer the question. I like to tell stories, maybe give people an escape from reality for a minute. Also I used the writing to help me stay focused between seizures but this year they have increased to the point of, well, there is no focus. My wife says that I have had seven seizures in the last forty days. I don’t know. I can’t remember. My memory is, I can walk in a room, talk to someone then leave and come back in five minutes and apparently have the same conversation without even knowing it. It happens. What is one to do. Can’t complain. Doesn’t do any good but I will say that sometimes these little rambles help clear the head.
At home in my bed
I had my VNS surgery last night and here in a few I will be asleep. at home in my bed with my wife. My family has been awesome as far as being there for me. IT was and continues to be an interesting experience for me. I decided to do a vlog of this whole experience and will have the first one up tomorrow. My voice is pretty messed up from the surgery and there is all kinds of stuff but right now I am so tired and full of medication that I have about twenty minutes before I sleep or pass out however one would word it. I wish all a good night and great week.
Surgery in 16 hours
Surgery in 16 hours. Hate to say it but I am nervous. Shouldn’t be and I know it but I still am. I have read a lot of people talking about the side effects of the VNS surgery and I know that it is a small percentage but I have always fallen into that category as far as medicines and other surgeries have gone so I am nervous. Doesn’t help that I cannot drink or eat or anything for the next 15 hours. Hate this part of it. Silly I know but I do. Hey, maybe this will work. Maybe we will finally start to get a grip of this epilepsy and start getting my control back. I owe to my family to try everything. They have been awesome and amazing over the last 9 years since the seizures started. I got to try, right? I am just nervous. Could probably ramble all night long and I’ll probably be back here to do a little more later. I don’t know. Have a feeling the next 10-12 hours are going to go slower than I’d like.
I am home and it feels good. Just a couple days but it felt like longer. Didn’t have a seizure which was good/bad for me. Good because I feel good and the seizures aren’t fun and I am very happy to be home. Bad because the doctors wanted to see one and, actually I have no ide what they want. I asked them what good could happen if they catch the seizures on tape and are able to measure this and that. They say that then they will be able to know exactly where the seizures are occurring within the brain bla bla bla but in the end it doesn’t stop them. Still have the surgery next week. Whatever. Do what they say is all I can do. Going to retweet those who have tweeted me recently and then the kids that are home are going to help me get this house cleaned up before the boss (my wife) gets home. Very curious to see how the day goes.
Leaving for hospital
I am leaving for the hospital in about five minutes. It has been a long couple of days with very little sleep. Maybe I’ll have a seizure while their. Hope not. Know they wouldn’t mind it while I was hooked up to all those wires. Anyways this here ramble has to be quick. I am already almost late. Oops. Happens right. Not allowed to take a computer or this or that bla bla bla. Got to go. It’s going to be an interesting night.
Later tonight I have to go to the hospital for another sleep study and they gave me a strict sleep schedule that they want me to follow so I am still here, still awake. I decided to make our story LOST WITHIN MANY free on Amazon today. Why not. Anyways. Last night there was actually progress in the area of writing. Not sure where it’s going. Really? Am I surprised about that? No. I am so tired but still not allowed to sleep until 8 P.M. tonight. I need to stay focused. The story I started was interesting and I really hope that I am able to keep the thoughts that I have. With the way my memory has been since the increase of seizures who knows. I don’t that’s for sure. Kids are getting up, gotta go make’em breakfast.
Curious to see what happens
Last night I had a quick vision, actually I don’t know how to word it but it is what happens when I write. My vision blackens and then I fade into a scene and this was a pretty cool one. This has been a rough year especially as far as writing. It started out fine with Promises and then Lost Within Many was going good but my dad passed away before I finished it and that was a little tough for me. I just miss him. I miss talking to him and it doesn’t help that my seizures have increased to multiple a month. That kind of bites but hey what am I to do? Complain? Well maybe a little but that doesn’t help so I asked my wife if I could spend some nights down here and she said go for it. Also the VNS surgery is the 31 and I don’t know how things will be after that so I kind of looking at it like … I just had my monthly seizures and though they have increased they have been consistent the last 5-6 months occurring between the 9-20 of each month. I keep reminding myself that I have till the 31 and that’s at least ten days and nights. So lets see what I can get done. I have no idea what story I will work on. It probably won’t be T.B.O.T.E. Book 5, I just don’t think I can get through it in time. Who knows. Maybe I won’t be able to get anything done but right now I have my music ready. I’m going to twitter for a bit to tweet some fellow writers and then I am putting the headphones on. Curious to see what happens.
Rough couple weeks
I tell ya or myself it doesn’t matter. It has been a rough couple weeks and I am tired of these types of weeks. I know with my epilepsy that they are coming no matter what. It happens. There are many people who have it way worse so there is no reason for me to complain. If it helped then maybe but it doesn’t. The next few weeks are going to be a different type of distraction and issues. I checked my schedule and I have three doctor visits, one sleep study, one surgery and then doctor visits once a week for a few. I am just going have to deal with it. There are stories with each day that passes and or with each seizure I am just losing from my thoughts. I can’t have that. Someone sent me an email saying that my ramblings are getting worse. I told them you think these are bad you should see the last couple of nights when I have tried writing. Talk about not making sense. My wife and I were just laughing at it but I’ll say this. I will beat it. I don’t have a choice. The next couple weeks will be rough but hey life doesn’t throw anything at you that you can’t handle. Time to prove it. I have between now and Tuesday night to try to get something done. Curious to see if I can.
Today I have more doctors to see but after this I do not have nay until next week. That means if I don’t have anymore seizures I should be able to write for the next few days and nights which would be cool. I have no idea what I will work on but I am excited to get the opportunity. My surgery is at the end of the month so if I can get a flow then I have some time and I might be able to get something done. It has been since March or April since I have finished a story. It would be cool to get one done. I am hesitating though. I was working on T.B.O.T.E. Book Five, actually I have been working on it for way too long but every time I get into it I have seizures and it drops me backwards. I know it is not related and that it is just a coincidence but five months in a row is still rough. I think of that story and my head swims with emotions. That story has been one of my demons for decades and sometimes I wonder will I get it done. I was thinking about maybe starting a new story. I don’t know. I thought about just putting on the music later tonight and pulling up a document and just see what comes out. The truth is when I plan things it doesn’t work. I need to just let whatever come out come out and not fight it. I hope it’s T.B.O.T.E. Book Five but if it is not it is not. Got to go. Have to get ready for the doctors.
If I just did this
I told myself no. No more seizures. It didn’t work. I’m just complaining. The truth is I am feeling better. I am. Another truth is I am nervous. I have the VNS surgery scheduled for the 31st and more doctor visits this week. After that I don’t know what will happen. Will the seizures stop? Will they stay the same and just not get worse. As of this year, well this has been the worst year ever. I went from a seizure every couple months or something to multiple seizures a month. My memory is a joke. Our oldest son loves making fun of me for that too. Which is fine simple cause I forget he does it. I can see it though when I’m talking to people, repeating. Most are cool. Oh well if that’s the worst I do then ok. This surgery is going to work. Then they will give me a new shoulder and I will get my arm back. Then look out. Oh to have both arms again and not to have to worry about flopping around on the floor in front of people. That would be cool. It is funny how these silly rambles help. Sometimes I wonder if I just did this if it would help. ksdfklhkjsadhkljfhkljsdhjkghjhJDSKHSJKDHGJKHOIWEUIORIJKFJLahjdfrhjkhkdjshfjkhjkhfjkhkjsdhjkhfjksahdjghhfhjlhdsflhgklajklgjlksdjoijriojagkj. Wow. Joking but that would have been cool. Handle what life throws at you. That is what we tell our children. Don’t give up. Always fight. Life is well worth it. It is hard sometimes but I know it.
I wasn’t ready for it. I guess one never is. I was doing fine. I’d actually just told my wife how good I felt. That was a Wednesday night. Bam! Thursday morning there are five emergency people in my room. Bam! It is three seizures and two days later. They were bad. My body was tore up. My mind was half gone. I blinked again and now it is Monday. The seizures used to be every month and half to two months but this year it has been multiple seizures monthly. I’m not having time to recover. This last time I was starting to feel good then bam. I don’t know. I don’t know why they are getting worse. I have a surgery scheduled for the 31st. The VNS thing in the chest. They said that or take a piece of my brain out. That scares the hec out of me so no way to the brain surgery. I don’t mean to complain but it has been a rough week.
No more. No more. No more. No more! It is what I keep telling myself. I don’t know. This has been a long rough year but that doesn’t mean anything. It doesn’t does it? I don’t think so. The truth is this epilepsy and seizures have dominated me this year. That’s my fault. I’ve let it get to me. Can’t do that. It can’t become who I am. I’m more than a man who flops around on the floor foaming at the mouth. I can’t let it control me. I have to get my focus back and I will. It is just that simple. I do not have a choice. My epilepsy will not control me. I have to get back to telling my stories. It helps me with my focus. So I am starting back to work on T.B.O.T.E. Book FIVE. The last two times i worked on it i dropped but now I feel good. So so so so so so I will get that story done. Plus I want to see what people think about it. I am really curious about this one. My thoughts are all over the place. That is something I need to stop. Focus. Focus. Focus. Ok. I am almost there. This little ramble has helped. Time to write.