Equal Rights

I realize that by writing this blog, I'm stepping into very controversial waters, and I'm OK with that. I am not here to write about only things that will make people feel good, but maybe things that will make people uncomfortable once in a while as well. That being said, I will get down to the matter at hand.

Every day in the United States of America people battle for equal rights. New laws are enacted to give certain groups the same rights that other groups have experienced for years. The most notable groups that fight for rights are fighting for women's rights and gay rights.

Women want to be treated equally in the workplace. They do not want to be discriminated against just because of the fact that they are a women. They want equal pay, equal opportunities and fair evaluations. Women want to be allowed to join the military should they choose that career path, and not feel any repercussions based on their sex.

A huge issue in the news right now is equal rights for gays and lesbians. Homosexual couples want to be able to marry and have the same rights as a "traditional" or straight couple. Homosexual couples want equal health benefits, which is a huge issue in a time where government mandated employer health benefits are getting closer and closer.

There are many people who fight daily for their rights claiming that they have in some way been discriminated against, so I want to raise my voice among the masses, adding my protest to the others and show how I am being discriminated against with no cause at all.

I used to have seizures. I used to have seizures so violently that I was prohibited from driving, because I was a danger to myself, and I was a danger to others.  Now, however, after years of working with different doctors and trying different medications, I am seizure free.

I have been seizure free for several years, and now have a driver's license, work a job, have a family and live a normal life. If I didn't tell you that I used to have violent seizures, you would never know, because I am no different from anyone else. Do I tell people??? Yes, I tell people, because I have no reason to hide it. I have overcome that, and it has made me into the person that I am today.

Now, here is where I feel that the laws discriminate against me. The laws state that if you are taking medication for seizures, you are not allowed to get a CDL license. My seizures are fully controlled by my medication, and I am not any different than anyone else who takes medication for anything. Not being able to get my CDL limits my job opportunities severely. My doctor told me I will be on this medication the rest of my life. So, even though I may never have another seizure, the law states that I am not allowed to obtain a CDL...just because I am on the seizure medication. So much for equal rights. 

History...everyone's favorite.

I'd like to take this opportunity to share my story. I want to tell you how I got where I am now from where I started. Don't worry, I won't include all the nitty gritty, but will try to include pertinent details along the way to show that living a life with seizures does not have to be dull and boring.

From the time I was born, until I was 15 years old, I lived in Cicero, Illinois, a "small" town which borders the west side of Chicago, and has a population of about 80,000 people.

My first seizure happened when I was 13 or 14 years old. You can read about it on my seizure stories page. At that point, I had a friend who had Epilepsy, and had been having petit mal seizures for several years. I knew what they were, but I never thought I would have a seizure. We always gave him a hard time about his "staring episodes." Looking back, I wish I knew then what I know now about seizures, because I would know that even the little bit of teasing that we did could cause a lot of pain.

Several months later, I had my first tonic clonic, or grand mal, seizure. That story is also told on my seizure stories page. Again, even though this was a full blown tonic clonic seizure, and I took my first ambulance ride because of it, it was all surreal to me. I had seen my brother have a tonic clonic seizure before, and as with the petit mal seizure, I assumed it would never happen to me. I would never have to live with seizures, because I figured it was probably a one time thing. I would never have to suffer through the pain they brought. I was not going to be "that poor kid." This was some sort of freak thing, and wouldn't happen again. I didn't think that years later I would be dealing with the effects of seizures still. I never imagined how it would alter my life. 

But my life did change. This first seizure was merely a beginning to what would become a very long road of many seizures, more doctor visits than any kid should have to endure, seemingly endless tests and trial and error with countless seizure medications. I had seizures all the time it seemed. Every week or two (which may seem very infrequent to some people, and very frequent to others, depending on your situation) I would wake up completely confused, not knowing what happened. Once I was told that I had a seizure, I would just break down crying, because it was too much for me to handle. Sometimes at night, I would lay there crying, asking God, "Why me?" I hated myself, and what I had become. I hated other people because they couldn't understand the pain it caused and what I was going through. I hated God for allowing me to have seizures. I hated my teachers because they couldn't understand why I couldn't just get it when everyone else understood a concept. They never knew why I had such a hard time in school, why I couldn't remember anything for tests, why my grades were suffering. I had no respect for myself, and began thinking of ways to commit suicide. How would I do it to make sure it worked and I was never heard from again. I did not want to live my life suffering through the seizures, having to deal with the pain they brought me, causing my family pain and trying to explain why I couldn't do certain things, or remember anything. I hated myself and I wanted to die.

I sorted through ways in my brain, thinking about what others had done that had worked and not worked. I did not want to fail at it when I finally did it. I wanted to make sure that the plan I came up with was fool proof, and would leave no room for error. I took months planning it out in my head, and somehow during that time I saw things through a new light. I saw that, even though I was having seizures frequently, I was costing my parents money I'm sure they didn't have, I was a huge burden (that's how I saw myself), and I was completely worthless as far as school went, for some reason my family still loved me. I saw in them a love that cut through my hatred...my selfishness...my disrespect for myself. That love kept me alive...quite literally.

From the time I was a baby, my parents had me in church. Every Sunday morning, every Sunday night, every Wednesday night and any other time the doors of the church were open. I was taught about God's love and how it is not based on us or what we do. Somehow though, that is easy to know, and not very easy to actually believe. Once I started having seizures, I thought there was no way God could love me. I was some sort of mistake, and would be better off dead. However, as I said, my family showed me the love of God, and because of their love and God's grace, I am alive today.

So, what about the seizures...? Did they quit once I decided not to commit suicide...? Was that just God's test to see if I would...? No, the seizures did not stop. They continued heavy for several years after that, as did the endless doctor visits, tests, medicine switches, etc. Never again did I reach a point where I wanted to end my life, though. The seizures continued through high school, and while everyone else was getting their driver's license, I was getting a state ID card, because I was not allowed to drive. My grades in high school suffered because of the seizures. My short term memory was erased every time I had a seizure, and as far as long term memory (events from my childhood, etc.), there are a few VERY fuzzy things that somehow snuck through, but other than that, there is nothing there.

Because my short term memory was erased every time I had a seizure, I had a VERY hard time in school, and was given extra time on tests, even though it didn't help. I would sit and puzzle over answers forever, knowing that I should know it, and not being able to come up with anything. I would frustrate myself so much I would break down crying because the answers were just not there, and I never remembered even learning that material. It was as if I was a freshman, and someone handed me the final exam that the senior class was taking. I looked at the tests completely dumbfounded. My teachers did not understand how I could learn something one day, and the next day have zero knowledge that I had ever even learned that before. Not just forgetting how to do a math problem, but looking at something as if I had never seen it. Somehow, I made it through high school, but to brag about my GPA would be foolish.

For some reason, after high school, I thought that going to college was a good idea. I'm not sure where I came up with that plan, or why I thought it would work when I barely made it through high school, but I went for it, and let's just say...it didn't work. College professors have better things to do than help out "forgetful" students. Yeah, I got extra time on my tests in college too, but like I said, that didn't help, because there was no information there in my brain when I went to take a test. So, I lasted one semester at college, then decided against that, and moved to Colorado where I've been since then.

Several years after I moved away, one of my college professors had a stroke, followed by a series of seizures. He talked to my parents and apologized because he said he thought I was trying to get sympathy for having seizures. He said he couldn't understand how you could forget everything you learned...until he experienced having a seizure and forgetting everything. I would NEVER, EVER wish a seizure on ANYONE, but for him to say that made me feel a little better, because while I knew I wasn't faking, it's nice to have my statements backed up. 

Since I've moved to Colorado, my seizures have been much more controlled by the meds I've been taking. I now live a very normal life, I am married to my beautiful wife, Abi, and I have two beautiful daughters, Hadley, who will be 20 months old on July 1st, and Brinkley, who will be 4 months old on July 4th. I work a regular job, I now have a driver's license and besides the fact that I have to take pills twice a day, the seizures no longer are a part if my life.

I am still affected by them, but I just don't have them anymore. It has been a few years now since I had one. The effects now are minimal. I still have very little memory of my childhood, but don't expect that to ever return. I have a hard time remembering certain things, and will have times where I forget things that should be easy to remember, like family member's names, or birthdays.  The other effects come in the form of having no formal education passed high school, so getting a decent job is hard. I have considered going back to school, but am very scared at that possibility, because of the fact that it has not gone well for me in the past. I may at some point go back, but I am not sure what I would want to study.

So...now that this has gotten much longer than I had intended, I'll stop, before I have to get with a publishing company and see about putting this into a hardcover.

Seizure Disorder Update

The other day I said I was going to have a doctor's appt. with my neurologist. I said I was planning to ask him about weaning off of the meds, and said I would post a follow-up to that visit. Well...here it is.

I asked him what the possibility of me weaning off of the meds would be, and how long I would have to be seizure free before trying that. He said that because I have such a prolonged history of seizures, and they were such a huge part of my life through my developing years that there is no chance that I will wean off of the meds. I am on them for life. It is not a case where weaning is an option even because of my history.

So...that settles that, and I don't have to think about that anymore...just keep taking my meds.

I also asked my doctor about having my VNS removed. In case you don't know what it is, a VNS is a Vagal Nerve Stimulator.  It is basically a pacemaker for my brain. There is a small "box" in my chest that has the battery and computer. Then there are wires that run up my neck and are attached to my Vagal Nerve. The battery is dead and has been for a few years, so I thought taking it out would just get rid of a foreign body from my body, and prevent possible problems.

When I asked about removing this, he looked at me like I was crazy. He said if its not infected, there's no reason to take it out. So after that appointment, both of the things I asked about I was told were not going to happen. But I did get my prescription refilled...so I guess it was a profitable appointment. 

Seizure Disorder

Not sure how many of you know, but I have a seizure disorder, which was diagnosed in about the 7th grade, and has frustrated me ever since. I have had seizures off and on, but for the past few years they have been under control with meds. Because of taking seizure meds, I am limited as far as what jobs I am able to do. I am not able to get a CDL, and most places will not let me drive commercially, even though the meds totally control my seizures. So...I have a doctor's appointment tomorrow for my yearly visit with the neurologist, and am going to ask him about weaning off of the meds. I don't know how long they generally want people to be seizure free before weaning off of meds, but I am hoping he will be able to give me some answers, and maybe start that process.
Even considering that is a very scary thing for me, because of the fact that I have been on these meds for a while, and they've been working well. The last time something changed with my meds, I was unable to go back to the meds I had been on, and had to go through the process of figuring out what meds would work to control the seizures.
If anyone out there has experience with weaning off of seizure meds, I'd be interested in hearing about it. Thanks for your encouragement, and I'll let you know what happens, and how it goes at the doctor's.