The Taboo Topic of Illness

Since starting this blog, I've had countless conversations with friends and acquaintances about their illnesses. Some have epilepsy too, some migraines, others have talked to me about health problems that I don't feel comfortable mentioning. There is something so liberating about talking with someone about our suffering. So why is it that we can't discuss physical, mental, and emotional illness freely?

I didn't want to I denied that there was anything really wrong with me, even after I started medication. I didn't want to tell anyone or change my lifestyle. When I felt tired, I would "shake it off" and push myself each day. I wouldn't eat for hours when I was busy, and on the weekends I would stay out until I wanted to. I would take my meds every day and not think about what I was actually taking.

I had auras at school and realized I had to tell my students. Could you imagine? Teaching 16 year olds and collapsing in the middle of class into a grand mal seizure? I told them, and they freaked out, but it was liberating to tell someone about it. And my coworkers were so understanding. 

I still felt (and sometimes still do feel) embarrassed to tell my friends I can't go out because I'm tired, or that I can't stay at work for an important event because I need to eat. Like I'm weak or a complainer for blaming my inactivity on feeling a little tired or hungry. What's my problem? Can't I just get over it? It's my fault that I have seizures. Doctors may say they don't know what causes them, but I do. I made bad lifestyle choices and now I'll just have to deal with them. Suck it up and live your life. 

Those feelings are ridiculous to have, I know now. I have F-ing seizures, there are limits to what I can do. But it doesn't change the fact that I sometimes feel like I'm being judged for going to a bar and drinking water, or sitting on my couch all day on a Saturday. I decided to reach out to a few of my family members and friends and talk about it. Conversations like these have helped me stop blaming myself for having seizures and move on down the road of feeling better.

Over the years, I've come to accept that I need to make lifestyle changes. I try to make sure I get enough sleep (with varying success), eat every 4 hours, and let go of some control in the classroom. Still working on that one :) I know there are more changes I have to make, and talking with people about these feelings is SO helpful. Why can't we all have discussions like this? Is there a stigma about illness, where people judge each other and think everyone is to blame for whatever their diagnosis may be? Or maybe it's difficult to have discussions about our feelings from behind a computer screen.

Don't be fooled, writing an entry like this is actually kind of difficult, talking about feelings and such. But I feel it's important to tell you that it IS important to have conversations like this with your friends. Talk about your illness, take care of yourself, and know that you don't have to deal with your feelings on your own.

I'm Pretty Sure I Cheated Death...Twice.

Hudson River Road

Picture taken by sacoo

Hindsight is truly 20/20, especially during times when we know one different choice, one different turn could have changed everything. For me, I look back on the time I had my first seizure and shudder. I either have a guardian angel, excellent karma, or just plain luck on my side, because I came close to not only killing myself but also someone I love.

The Night of January 1st, 2007: Cross Country Drive
It was the night of New Years Day and I was driving cross country from Morrison, Illinois to Mechanicville, New York. I had just finished an epic vacation of staying up late, getting into all sorts of unnamed trouble (censoring for self/professional preservation), and living it up for ten days. It was my Christmas break from SUNY Cortland, where I was also running around like a crazy woman. I went to class late during the week, partied at night, and played rugby on the weekends. Truth be told, I was pretty unhappy...but don't tell anyone, I have a reputation to keep. Moving along.

That night I was absolutely exhausted. My younger sister Caitlin had spent time with her friends somewhere else, and I swooped it to pick her up on my way home. I drove through the night, 15 hours straight. Not much sleep the night before, fast food, a pack of smokes, and soda to keep me awake. I felt like absolute trash and had to struggle to make it to 5 a.m. I didn't want to ask Caitlin to drive, she was tired too. I'd suck it up and let her sleep. She slept in the passenger seat while I focused on the icy roads and delivered us safely to our house in Mechanicville.

That was the night my sister and I cheated death.

My body was on the cusp of a grand mal seizure, and I had no idea. No warning. No prior history. Nothing. What caused my body to wait? Why not lose control under those incredibly stressful circumstances? I really don't know. All I can do is think back to that night and thank whoever was watching over us, because based on what I know about seizures, I should have had one that night, with my sister in the passenger seat and the icy roads winding through the mountains of New York.

My mother told me she knew something was wrong with me when I got out of the car as she was getting up in the morning. She said she had never seen me so pale and run down. I went immediately to bed and slept for 9 hours.

Morning of January 2nd: Hudson River Road
When I woke up, Caitlin made me an omelet and I called my friend Shannon to hang out. I haven't been able to eat an omelete since, by the way. Shannon and I were going to go to Hudson Valley College so she could run some errands that afternoon. I always drove wherever we went. I loved to drive, didn't matter the distance. This time, though, Shannon told me she wanted to drive for us since I had just finished driving cross country.

It was at this point Shannon and I really cheated death.

We were driving along Hudson River Road in Mechanicville. There is a guard rail, some grass, and a drop off to the Hudson River that's on the driver's side of the car. Keep in mind, the river is icy yet still flowing pretty briskly. If I had been driving, what would have happened? Would the car have rolled? Would the guard rail have stopped us from going in the river if we were driving at 45-50 mile per hour? Even if it did, would we have walked away from the accident? Hit someone head on? Thank God I'll never know.

I'm talking to Shannon all heated about something, waving my hands in the air as I usually do when I'm spicy about whatever I'm venting about, when all of a sudden I went silent. I balled my fist and hit her in the side of the face. Of course, Shannon was like, "What the f*ck?" and she looked over. Immediately, she freaked out.

My head was bent back, my eyes were rolled up, and both of my fists were balled up and hitting out to the sides. My entire torso was convulsing, but my legs remained eerily still. I didn't stop shaking for two minutes. Shannon pulled over, ran out of the car and flagged down a truck to help. She called 911 and then my mom. It wasn't easy though, seeing that I call my mom "mamasita" in my phone. Should probably change that...

Anyways, the ambulance showed up, got me out of the car, and rushed me to the hospital in Troy to begin a bunch of useless tests that would lead to no answers. I ended up in a hospital bed with a worried family and a diagnosis of "We Don't Know." I was told I had a 50% chance of having another grand mal seizure, so it was their suggestion that I take anti-epileptic medication for the rest of my life to make sure I'd be safe.

I say screw that, doctors. I've never had a seizure. Why would I have another one? No medication for me, thank you very much. I'll be fine.

Now, I think back on this time of my life with gravity. I am humbled, and I try to live my life with gratitude each day because I am aware that I am lucky to be alive.

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.