My Daily Commute

All of my neurologists tend to ask the same type of question: where do you live and how do you get to work? I answer "Crown Heights" and "the subway" but I can't fully convey what it's like to live in my apartment and commute to work. I think environmental stressors cause blips in my brain waves, because it can be overwhelming at times to be surrounded by so much stimulus. Let's see what you think:

1. My Room

Much to my  mother's disdain, I still don't put away my laundry, shoes, or books. I don't make my bed and tend to...well, just throw things around. Saturday is my day of cleaning up the tornado I create in this space. Don't worry, I push everything off when I go to sleep ("push" being the operative word here).

2. My Block

 

My apartment building is the first one on the right. Why do people think Brooklyn is so dangerous? Does this block look terrible to you? No. However, the big castle-looking building is the New York State National Guard Armory that just so happens to be a halfway house. And last September I had to side-step a crime scene with my Japanese food. But really, it's not bad at all.

3. My Morning Commute

I wait every morning to get on the A train. The picture above is taken at Fulton Street, a stop on the southern tip of Manhattan that has no fewer than 6 train lines that run through it, connecting Manhattan to Brooklyn and taking commuters up the east or west side of Manhattan. Just for perspective, there are five people waiting in lines crammed side by side all the way down the platform, waiting to literally smoosh into the subway car. Sardines, that's what we are. 

The A train isn't usually this packed. I'm on it for 45 minutes and transfer to another train that takes 20 minutes. Door to door, I spend an hour and a half going to work. 

4. My School: I am going to put together a post that chronologically catalogues what a day in the life of a teacher really consists of. It will be entertaining to say the least :)

5. My Ride Home

The 1 train runs over this bridge and brings me to the A train in the absolute grossest subway station in all of Manhattan. A picture doesn't do it justice. Just imagine what it would smell like if 5-7 homeless people lived in an underground tunnel that has no ventilation...or bathrooms...and white fungus growing on the ceiling that periodically drips in brown pools. Enough said. 

6. My Recovery

Megan's cat Gracie, Alex Trebeck, and pajama pants. That basically sums up my nights when I'm home. Speckle in trivia night, happy hours, and movie nights. Soon, I will have 3 softball games a week.

This is my cluttered daily life, constantly surrounded by people in the greatest city in the United States. New York City is such a vibrant, exciting place to live, and I'm so glad I moved here. But the daily grind is stripping me of my energy and resolve, and I'm suspecting something needs to change.

Epilepsy? You must be joking.

In January of 2007, after driving 15 hours cross country through the night from Morrison, Illinois to Mechanicville, New York, I woke up the following morning and had a grand mal seizure. Up until this point, I had had zero health issues. Doctors had told me I was in perfect health my entire life. I grew up playing sports and continued through high school and college. I had never had any surgeries or  head injuries, and there was no family history or genetic predisposition to seizures. There was simply no explanation as to why I had all of a sudden had a serious seizure. One second, I'm driving with my friend on River Road, telling her about my Christmas break, and the next thing I know, I'm in the hospital. I had no clue what had happened, so I looked to my doctor to give me some answers because, after all, that's his job. The conversation I had with the doctor was absurd to me:

Doctor: Hello Diana. You had a seizure.

Me: (coming out of my post-seizure daze)What? A what?

Doctor: A seizure. A grand mal seizure.

Me: ...Okay. How? Why?

Doctor: Well, your brain is in perfect health and there's nothing showing up in your blood tests or body scans, so I don't know.

Me: What do you mean you don't know? There has to be some cause for this, I haven't been sick a day in my life.

Doctor: Sometimes these things just happen and we don't know what causes them.

Me: I don't understand what that means. This is ridiculous.

Doctor: I'm sorry, we just don't know what happened.

Needless to say, I was salty. He had no answers for me, he only gave me two options: one, I could go on medication for the rest of my life and not have another seizure. Two, I could refuse medication and risk a 50% chance of having another seizure at some point in my life. I was like, "Screw that, I'll take option 2, thank you very much." Why should I medicate myself after some freak accident? I won't have another one, I'm sure I'll be fine.

Well, I wasn't. I went back to college at SUNY Cortland and had a second grand mal seizure. At that point I gave in and started the medication Lamictal. I have had five neurologists in total, and to this day no one has given me any answers as to why I have seizures. They speculate and predict and advise, but never give me any answers. I've had tests up the wahzoo: two extended stays in the hospital, three EEGs, two MRIs (which are crazy scary, by the way), and one CAT scan. Nothing. Perfect health. I tried to reduce my medication, thinking one day I might be able to stop it. Reality is that once a person has two seizures, there is over a 90% chance they will have another one at some point. I'm a teacher. That's out of the question.

So here's what's up: I am 29 years old, in perfect health, with a clinical diagnosis of epilepsy and periodic dizzy spells. I have no answers, only treatments, and modern science has reached it's final conclusion that I should take Lamotrigene (the generic version of Lamictal) for the rest of my life. But don't worry, there are no serious side effects or birth defects associated with it. It's been around since 1994, it's great. I'll be fine. 

...I'm not satisfied. Instead, I am left with an infinite number of questions. Why? Why should I accept this diagnosis? Why hasn't anyone explored the causes of my seizures? Can I do anything else to control my seizures besides rely on medicine for the rest of my life? 

Which leads me to why I've started this blog. I've decided that there has to be more to my treatment than relying on a medicine that will be my crutch for life. I want to explore every option, every approach, every possibility that's out there. I refuse to let a medication control my life, and I refuse to accept that this is the only way to manage illness. I'm hoping that my blog will help readers that suffer from elusive illnesses like mine to see that life isn't always about accepting what we believe to be true about medicine. Why should I accept that a neurologist is the know-all end-all of seizure treatment? We still don't understand the brain for goodness sakes! I will share my imperfect life, difficult decisions, and crazy adventures into the world of medicine, and hopefully you readers will expand your perspective about medicine as we know it. I know that this exploration will broaden mine. And it's like I tell my students: Never accept what someone tells you just because of who they are. Question everything, explore life with vigor, and search for your own answers. 

And that's exactly what I plan to do.