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Old 01-03-2005, 06:20 AM   #1
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EthanF HB User
Arrow Why Me

I am 27 and I have lived with Epilepsy all my life. My first seizure was when I was less than a year old on my mom's first mother's day which was also her birthday. A couple years and a lot of seizures later I was also diagnosed with ADD. In my heart I wouldn't be surprised if we someday discovered that in my case the two were connected.

So I went through the public school system. Events that happened at school as a result of my LD and my Epilepsy just put more wood on the fire of kids teasing me. The stress of that made me develop an overeating problem.

There is one seizure that I think about every day of my life. The year was 1991 and it was the night before Christmas Eve. At the time I had a bunk bed. (I live a little west of the cityof boston) Due to the cold weather my mom turned up the heat in my room that night. My parents and I went to bed and in the middle of the night they were awakened by the sound of a crash. My mom decided to make sure I was alright. When my mom came down she discovered I fell off the bed and got stuck between the bottom bunk and the wall. I had stayed there for five minutes before the fire department arrived. They ripped the bed appart to get me out right away and brought me to the hospital. I didn't wake up from that seizure till I was in the hospital on a stretcher being wheeled down a hallway. I was bleeding all over my head and was very confused about what was happenning. Later in the ER it was discovered that during the estimated five minutes being stuck behind that bunk bed my lower leg landed on the room heater. I had developed a third degree burn on my leg. I spent two weeks in Shriners Burns Hospital and had to get a skin graft. Today I look at the mark on my right leg every night and and think about that night before Christmas Eve in 1991.

So the years went by, I had more seizures, my neurologist changed my medications and the doses. I went through dilanton, tegratol, and many others that I can't remember. After my freshment year of high school my parents pulled me out of public schools and put me in a private school cause they believed public schools weren't working with my ADD at the time. It was never diagnosed but I believed that somewhere along the way I also developed a small case of depression. Private school helped my emotional situation a bit, but in my opinion it wasn't enough. In high school I discovered the music of Neil Young. Maybe it is the rythem, or maybe the content of his lyrics, but ever since I started getting into his music listenning to it has always told me that life can screw you over in any way you can think of but you have to be patient cause a light at the end of the tunnel will come soon. On the other hand through high school kids I had a few seizures at school, I started showing signs of having Dysgraphia as well as ADD, The students continued making fun of me, and my grades as well as my self esteme went down. It got so bad that on the day before my High School Graduation I tried to kill myself.

I still graduated and went to Landmark College for the Learning disabled the next year. Landmark College helped me get myself together. I finally started loosing wait, I learned about how my learning disability works as well as developed new ways to work around the problems my learning disability caused. I about learning assistive software such as text to speach software and voice recognition software which I am using to type this notice. But as that worked out my seizures did not. I was the only person my age at high school who didn't get to drive a car and it was the same way in college. All the other students around me could come and go as they pleased and I had no way to get around and have a life outside of my dorm room.

When you have a seizure you are required to spend six months seizure free before you can drive again. While I was in school there were so many people who said they understood what it is like to have your license taken away for something that you have no control over, but they were not willing to give me a simple ride to town if I asked them. There were about 3 or 4 that I remember who were willing to give me a ride at times. They didn't understand 100% how I felt but the few who were willing to give me a ride had an idea of what I was going through.

So Landmark helped me get things together emotionally, for the most part. After a long time there I finally left and I thought things were looking up for me, but life was about to take a big turn. For the most part my seizures were under control during college, just not enought under control for me to spend six months without a seizure. There were a few times I got my driving back for a short time. One time I even had a seizure behind the wheel.

About a year after Landmark College I started going to a new Nurologist. It was not one of the best appointments. After viewing reports from my past and doing some basic physical tests he came to the conclusion that my epilepsy is getting worse. He wants to do a lot of tests ove the next year or two and maybe change some medications. I will obviosly not be able to drive during this time, and that is a problem when you live in a town with no public transportation.

So that is wear I am today. But to make matters worse I just got laid off from my job last week.

Last edited by EthanF; 01-03-2005 at 06:22 AM.

 
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Old 01-03-2005, 10:39 AM   #2
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Join Date: Aug 2004
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Kathy287 HB User
Re: Why Me

Ethan,
wow, I am sorry to hear you have had it so rough. You do really need to talk to a doctor about depression, you sound so down. I know, from experience, E meds can cause depression, let alone all that you have been through. If the neurologist has said you can't drive, and there is no public transportation, maybe you can get disability? Especially during this time of trial and error with meds. I know I went throgh a year of that and felt awful, if I could have not worked, I wouldn't have. Well, best of luck to you, and keep us posted on how you are doing.
Kathy

 
Old 01-03-2005, 02:37 PM   #3
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Join Date: Jul 2003
Location: Minneapolis, MN, USA
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Art_930 HB User
Re: Why Me

Ethan - sorry to hear that it all seems to be raining down on you. Like Kathy, I'm also wondering if the combination of not being able to drive and lack of public transportation might get you some sort of government benefits. Perhaps your unemployment benefits counsellor would have some info?

Thinking positive thoughts your way.

 
Old 01-05-2005, 09:50 AM   #4
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Join Date: Aug 2004
Posts: 139
buliem HB User
Re: Why Me

Ethan,
Sorry you are having such a rough time of it. People really need to be more understanding. I don't have E but my son does. Last night at dinner he asked if we wished he'd never been born. Of course not but I'm wondering if he feels that way. He's only ten. It breaks my heart. Anyway please talk to someone about your depression. Epilepsy is such a frustrating and difficult disease to handle. I can totally understand why you are down. You seem like a bright and wonderful person who has had to deal with a lot. Hang in there and my thoughts and prayers are with you.

Julie

 
Old 06-27-2005, 03:56 AM   #5
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Join Date: Feb 2002
Location: England
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niecsey HB Userniecsey HB User
Re: Why Me

Thank you Ethan for sharing this post with me l wish you well thank you.

 
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