The Emotional Toll of Epilepsy

It’s 8:15 on a Friday night, and we’re sitting in the Emergency Room of our local hospital. This isn’t our first Emergency Room visit, and it won’t be our last. I guarantee it. And it’s not that I mind being here with my sweet husband on this night, it’s that my heart breaks for him and what he’s gone through to put him here.

Adam has epilepsy, which developed after a tragic car accident when he was eleven years old. The words- which I have repeated to doctors, nurses, friends and family over the last six years- are easy to say. Traumatic Brain Injury. Seizures. Treated with medication. Triggers. They’re easy to say, but what’s not easy to convey is the all-encompassing, overwhelming existence that is life with epilepsy. There’s no way that anyone can fully understand or sympathize with the pain that my husband feels.

But we’ll get to that.

The reason we’re sitting in this Emergency Room is that my husband had a mini seizure- a “twitch” is what we have termed small spasms that drop him to his knees. This has happened before- but this time, when his legs turned to jelly, we were walking the dogs. I saw it happen- in slow motion, maybe- he looked twice and started to cross the street, and his legs were gone from beneath him. The leash clanked to the ground and the dog was startled. My husband fell hard onto the asphalt, and his head crashed against the street.

I rushed to help him up as a neighbor looked on from his driveway. The tears started flowing immediately, both of us. He limped home and as he was washing his face, he looked at me and said, “Some days, I just feel like giving up. I’ll never be able to do all the things I want to do. “  I didn’t want to upset him further, but this was the first time he articulated what he was feeling about his seizures- and I admit that I have felt it some days, too: Sometimes, the pain and reality of this horrible condition seems to be too much… insurmountable.

If I have learned anything from my husband, it’s to get up and keep going- every day. Adam always has a smile on his face, and it’s only in these rare moments that I see how much living with epilepsy affects him emotionally.

Adam is the strongest & sweetest person I know. Strongest because he continues to live his life without becoming jaded or sad about his circumstances or the situations he’s been through. Sweetest- because he wakes up every day with a smile on his face, and something tells me that no matter what happens- he always will.

Graduation Update!

Happy 2015! Every time I promise to update more, life gets in the way! However, I have great news to report going into 2015.

Adam graduated with honors on 12-13-14 with his Bachelor's in Sociology! I can't explain how very proud I am of Adam for his amazing accomplishment. When he enrolled in school 4 years ago, we had so many obstacles to overcome, and questions to answer. How would he get to school every day? How would he handle the course load? How would he take notes? What happened if he had a seizure on campus? Throughout his four years, we revisited those topics more than once-and persevered through everything that came our way.


Adam and I on Graduation Day!

Now that Adam  has graduated, he is actively job-searching for a position in social services and/or nonprofits. He has a passion for helping people, sharing his story and aiding his community. He has filled his days with volunteerism with the United Way and The Senior Center, and this Christmas he worked with The Angel Tree program. Adam feels that giving back to his community is a great way to share his talents, and I agree! He's definitely keeping busy!

One more big announcement: Adam is going into 2015 SEIZURE-FREE! He hasn't experienced a seizure since sometime in December (with all of the excitement of graduation, we haven't kept track!) We credit this drop in seizure activity to less stress since school is over, more sleep, less carbs (we have been cutting sugar & the majority of carbohydrates from our diets), and finally getting his medication dosages right.

2015 is going to be a big year for us, but especially Adam! We look forward to all of the opportunities that are coming his way. It's hard to believe that we have been together nearly six years and married for 18 months!

Adam is a prime example of the amazing things you can do when you push yourself to follow your dreams and live your life, regardless of disability or the obstacles that crowd your way. Stay tuned...it's going to be a fun year!

Laylan & Adam

2014 Update: Never Stop Advocating!

It has been over a year, but I promise to be updating more soon! In fact, Make sure to "follow' this blog or bookmark it because things are going to be moving forward in exciting ways!

2014 was our first full year of marriage and it has been amazing, but we have been dealing with some unexpected health issues. My mother went through open heart surgery in February which really got us thinking about our own hearts and how to be more healthy.

In April, I got a call from a friend that Adam had experienced three seizures at the university and was en route to the hospital for evaluation. I was nearly there when I got a call from the EMT: He had progressed into a Grand Mal in the ambulance and had to be sedated. They took him to Centerpoint, which is about 45 minutes away and has a neurologist on staff.

During the evaluation, they found that Adam has a heart condition: hypertrophic cardiomyopathy. Adam's valve is not working properly and his heart is beating very hard trying to push blood through the other valve. Currently, they are treating him with a beta blocker, but encouraged him to lose weight and to monitor this- he will likely have heart surgery in the future.

In other (happier) news: Adam will be graduating with his Bachelor's in Sociology on 12-13-14! For those who personally know Adam, this is such a huge achievement for him- entering college in 2010 with little knowledge of computers, haven't been in school in over ten years, and now doing college coursework. He plugged away and has earned his degree in just four years! I am insanely proud of him!

He has also been volunteering with the United Way, single handedly hosting a Cold Weather Drive and he has collected 108 coats, scarves, gloves, hats, and sweaters for the local community.

As we look toward the future- life after graduation- I look forward to what Adam will do with his life. Stay tuned for more updates as we transition into a new chapter in our lives!

Collateral Seizures

I had every intention of updating this blog every time that we experienced the ripple effect this seizure condition, but it probably won't happen that way. The mental and physical exhaustion that comes with having seizures tends to wipe us out for a few days, and often leaves me in tears. Three years later, and I'm blubbering like a baby.

Generally, Adam's seizures happen during the night. Often, we can identify a trigger, but sometimes we can't. He wakes me up when they start and I go into Seizure Control-mode: I turn on the fan, pull the dog away from him (in case he kicks, also to cut down on body heat), pull the covers off, remind him to breathe, and get a wet, cold washcloth for his head.

It's over within a few minutes, sometimes closer to fifteen. Those are the hard ones... the ones that last a long time, while he's whining and crying and hurting. Those are the times I cry.

But there's so much more that happens, even after the physical seizure is over. Generally, he'll be able to calm down and relax back into sleep. I lie awake most nights, trying to turn off my brain. Since Adam doesn't work, he can usually sleep in the day after a seizure. I have to get up at 7:00 am the next morning, whether we were up late or not. This usually leads to me oversleeping.

Each time this happens, it's as if we each get a slap in the face that our lives will never be normal.

This is the "collateral" part of the seizures. Much like the seizures can't be controlled, the ripple effect reaches all other parts of our lives.

I know that I signed up for this. I was only dating Adam for for a couple of days when he revealed the life-altering story that left him with this condition. Maybe he told me to warn me, so I wouldn't be caught off-guard when it happened. And since then, it's been Adam and I Against The World.

And so that's why, even though some days I go into work bleary eyed, tired, I know that Adam has gone through so much more- and I know that we have to find a cure, Adam's cure. There's not a cure to fix everyone, but there's gotta be a perfect combination for him, and I WILL find it, because I believe it's out there.

Welcome to Seize the Day!

Hello, and welcome to Seize the Day. We are Adam and Laylan, a twentysomething couple living in the Midwest. We have started this blog to attempt to chronicle and unravel the mystery of Adam's epilepsy which he has had since he was sixteen years old. To have a full view of where we are today, we should go back to the beginning...

Adam is the youngest of four children born to a college professor father and a music teacher mother. On June 2, 1994, a dump truck collided with their car on the passenger side. Adam's mother passed away instantly, and Adam was trapped in the mangled car as he was sitting behind her. He was in a coma for five days and was diagnosed with a Traumatic Brain Injury. As he was only eleven years old, no one was sure the impact that this injury would have on his life.

When Adam was 16, he experienced his first seizure. His seizures vary from mild to severe and are classified as post-traumatic stress, clonic seizures. (I've seen them also called grand mal seizures, but I don't think he fits that completely) Adam is 100% conscious during the seizures, but has jerky convulsions, "lightning bolt" pain, headaches, and his body temperature rises. They can last anywhere from 3-20 minutes. We treat them with cool air, cold washcloths and breathing exercises.

When I met Adam in 2009, he was having seizures weekly. He was also smoking cigarettes and drinking beer nightly (it was summer!). As we started dating, both of these behaviors decreased, and so did his seizures. I also read online that potassium helps with seizures so we introduced potassium supplements to his daily pill regimen along with Carbamazepine and Zonegran. These lifestyle changes have attributed to a reduction of the seizures to only about one per month or less. (For awhile we were six plus months seizure free!)

Sometimes, Adam has seizures and we can identify the trigger. It can often be cigarette smoking or drinking if he's gone out with friends. It could be if he's eaten too much and his stomach isn't feeling well. It could be being jarred from a dream. But other times, there is no trigger that we can identify... which is why we've started this blog. We hope that we can chronicle and reach out to the traumatic brain injury and epilepsy community to share questions, praises, triggers, and solutions. I've been so frustrated with the lack of information related to seizures and TBI's online- I hope that we can bridge the gap together!

I hope you'll join us for this journey- I dream of the day that Adam can go years seizure-free.