Tuesday, April 8, 2014

Neurological disorders...and one reason why I run.

I know, I know... I haven't written in pretty much a year. The last year of my life has been a whirlwind.. but I need to be better about my writing.

Today, on my run, I thought a lot about both my dad and my grandma. My dad had epilepsy and died of a massive seizure when he was 31. My grandma has Alzheimer's, which has taken her beautiful memories and stories. When I think about the fact that neurological disorders are so prevalent in this world, I am both sad and angry. I feel like there is not enough awareness, understanding, or general discussion about either disorder.

My dad's death was unexpected, especially for a ten year old. He told me about his epilepsy just a few months before he died, but I was young and didn't really understand what it was. Then, he was gone. It took me a long time to deal with it. When I was 22, I started having episodes that felt like a mix between deja vu and panic attacks. Because I knew nothing about epilepsy or seizures, I thought that I had schizophrenia, and, naturally, told no one. (also... since I was studying psychology, I knew that schizophrenia usually came on in a person's early 20s. It was my biggest fear.) I was having these "episodes" almost daily, and sometimes multiple times a day. It was horrible. From November until February, I only told my roommates about my episodes, because, obviously, they both witnessed them a few times. My first grand mal seizure was on February 23, 2009. I was at work and had a panic attack/deja vu episode, but that time everything went black. Then I had some sort of a dream like I was floating through clouds. It was actually pretty pleasant. When I woke up, I was laying on the floor surrounded by some of my work friends. Someone said that it looked like I had a seizure. In that moment, everything made sense... at least to me.

After a trip to the emergency room, a day of wearing a heart rate monitor, an EEG, and an ultrasound of my heart... I knew nothing. All of my tests came back as normal. It was pretty awful, but at that time, I did not know that you cannot be diagnosed as having epilepsy unless you have two or more documented seizures. In my mind, I knew that I had epilepsy.

So, fast forwarding a few months to June 24 2009, I had a seizure in my sleep. Katherine woke up to a screeching noise and watched the whole thing. Being the person that she is, she wrote down everything that she witnessed. When I woke up later, she told me that I had a seizure. I remember being upset and feeling sick. I went back to the hospital and was officially diagnosed. Partial complex temporal epilepsy.

It took me a while to get adjusted to having epilepsy. For a while, I was really angry and pretty emotional about the diagnosis. Epilepsy stole my dad, so I didn't think that it was fair that I had it, too. After a little bit, I adjusted to it. I am not as angry about it anymore. When I think about it, it is more an opportunity for me. I have more of a connection with my dad and feel that I can make a difference through my diagnosis. I feel strongly about spreading awareness. I read articles and books about epilepsy all of the time. I talk to my friends about it. When I was first diagnosed, I worked several part time jobs at once and I took first aid information to post at work. I talk about it all of the time and I joke about my brain a lot.

I do get angry sometimes about the fact that people don't know about epilepsy. Every November is Epilepsy Awareness Month... and sometimes, I feel like the people that I know don't understand or know enough about it... and I am just one person. I cannot spread awareness to the entire world. I try to, though.

I do remember one day, a few years ago, when someone asked me about my epilepsy. He had seen something that I shared on social media and wanted to know about my experience with epilepsy. I explained everything that I knew to him. Later, he thanked me for helping him learn about it.

For the most part, I am seizure free and have been for a few years. I have not had a grand mal seizure since the time that I had one in my sleep in 2009. I have had some smaller seizures since then, but not as frequently or as intensely as before I was medicated. I am also much healthier than I was when I first started having seizures. I eat much better and exercise much more frequently (and I started running. a lot.)

My Nana M. has always been one of the best people that I know. I was lucky enough to have a great and close relationship with ALL four of my grandparents while I was growing up. My Nana M. is a big reason for the person that I am today. She gave me a love of photography. I won't forget sitting in her house looking at her photo albums for hours. She had them organized by year... and had so many photographs. The best thing about her photographs was that she had a story for every single one. She told so many great stories. I feel like I know so much about her childhood, even though I was not there to partake in it. I loved listening to them- one of her favorites were about digging a swimming pool with her siblings. I remember listening to her stories, amazed. Looking back, I think that she really impacted my life with her life stories. She's the reason that I love to tell my own stories... and the reason that I would like to write memoirs. She is also the reason that I still love to send (and receive) real letters in the mail. I appreciate the written word so much and she influenced that.

I also got to see many musicals and plays with her. I loved getting that time with my grandparents. There is one very special musical memory that I have with my grandparents. The three of us went to see The Sound of Music. I loved it so much. When we got back to my grandparents' house after seeing the stage version, Nana and I watched the movie version together. We were up pretty late watching the movie. Any time that I see the movie, I think of her and of that great evening.

My brothers and I spent a lot of time with her while we were little, because my mom was in school. I have the best memories with her. (gardening, baseball, going for walks, movies, Rescue 911, swimming, making cookies.... and so on.)

Nana M. now has Alzheimer's. At this point, it has progressed pretty far. She is in a nursing home and it breaks my heart a little. I really don't think that it is fair that someone who loved to tell stories, to write letters, to share memories more than anybody else I know... just does not get to have that any longer. If I could hear one more Nana M. story, it would mean so much to me.

I feel very passionate about Alzheimer's research. There is no reason that the most wonderful people in this world have everything important taken from their mind. I understand that the brain is complex and that we may never know everything about it, but I just would do anything so that nobody would have to go through losing themselves in the slow, painful way that Alzheimer's takes people. It is terrifying and miserable.

Both Alzheimer's and epilepsy make me very angry sometimes. I want more research, more awareness, and more understanding. I am so dedicated to talking about neurological disorders, because they have impacted me in a way that I cannot even express. I need to figure out a way to better spread awareness about both, because my Nana M. and my dad have been two people that have meant a ton to me. They both inspire me to live life to the fullest extent that I know how.


One of the reasons that I run is because I can. Because so many people cannot. I run for my grandma and for my dad. During each of my 5 full marathons, I have thought about both of them when it has gotten rough. They have both helped me push through.

My family means everything to me...


  1. That is a very moving post and love the ebb and flow of your words and thoughts. Keep up the awareness and sharing your story. (P.s. Alzheimer's didn't steal nana's stories if they continue on through those who heard them such as YOU!)

    1. Thank you bean! I appreciate your support. :-)