Epilepsy - My Problem

What is epilepsy? Epilepsy is a term used to describe a diverse set of neurological disorders. The most common and recognized symptom of epilepsy is a seizure.  Seizures are a symptom of a problem inside the brain most likely caused by disturbances in the electrical activity of the brain. And just as there is no one type of epilepsy there is not one single type of seizure they create. From Grand Mal seizures resulting in convulsions and often leading to unconsciousness to the less severe Tonic seizures that just cause muscle stiffness seizures come in various shapes and sizes.

I bring this up because I have epilepsy. Now an interesting thing I've noticed and talked about with Priya is how differently our individual conditions are treated. For those who don’t know Priya suffers from asthma. She just wrote a great piece about it which you can read here. One of the things she has found is that when she tells people she has asthma a majority of them are not very sympathetic because there seems to be a common misconception that asthma is just not that big of a deal. People tend to associate the word asthma with minor forms of the condition and seem almost unaware of the more severe forms of asthma such as Priya suffers from. I on the other hand suffer from a minor form of epilepsy yet when I use the word epilepsy people almost always seem surprised and immediately sympathetic to me because most people tend to associate the word epilepsy with the more severe forms of the condition such as people who have grand mal seizures and end up convulsing on the floor. But my epilepsy is not one of the more severe types of epilepsy. What this means is that unlike Priya my day to day routine and general well-being are not greatly affected by my condition but I would say that my life is still greatly affected by this condition and I would like to share some of that with you.

A typical month for me means dealing with 3 to 5 seizures often grouped together in the span of a few days. This number can increase especially when certain factors like lack of sleep, stress, constant worrying or alcohol consumption are increased in my life. The cause or causes of epilepsy are basically unknown though it is often associated with certain issues, like head trauma, overuse of drugs/alcohol and even just genetics so unfortunately I can’t say how I got my epilepsy. Due to the mystery surrounding the cause of epilepsy there are no real cures for it rather there are only treatment options meant to help control and/or minimize it. Each day I take two pills, one in the morning and one in the evening, to help control my seizures. The drugs are meant to reduce the number of seizures I have as well as make them shorter and less detrimental overall but they can't actually prevent them from happening.

I suffer from what are known as Absence seizures the result being a brief loss of consciousness. So what are my seizures like? Well I would like tell you exactly what my seizures are like and what happens when I have them but the truth is I just don’t know because in a sense I’m not there. Everything I know about them comes from what other people have told me over the years. My eyes remain open but they glaze over. I’ll look around like I’m lost or stare at my hands and then I may ask some innocuous or odd questions like where I’m I? What are we doing? Even sometimes, what’s my name? I also tend to clench my fists very tightly. This can become a problem if I am holding something like my phone or a remote control. Priya has told me several times she thought I was going to break my phone because she could hear the plastic cracking in my hand as I squeezed it harder and harder. Even worse is when I have actually been holding Priya’s hand and just started clamping down on it to the point of causing her to cry out. The seizures themselves are quite short rarely lasting more than 15 to 20 seconds at which point I’m told I come back but in truth I don't fully return. My motor skills are fine but my ability to have a normal conversation suffers. I tend to be a bit hazy about what is going on for at least a few hours sometimes for much longer. It’s like I’m running on autopilot because while my brain is back it’s not doing its full job. After a seizure my brain doesn't seem to keep note of what I’m actually doing or saying meaning that days even hours from that moment I won’t have any memory of what happened at or around that time. If I make a promise or ask a question I won’t remember the promise I made or the answer to the question I asked. It’s like my brain forgets to hit the record button after the seizure is over. I can’t even say how long this lasts because I don’t just suddenly wake up and realize I was gone. Rather when it’s over all I can really tell you is that I sometimes figure out that I was gone. Sometime this happens because I notice big gaps of time in my mind or just by looking at the clock and realizing I can’t remember the last hour or two. Other times I just look around and realize I don’t even know how I got to where I am at. There have been times here in London where I've been downtown walking around and the next thing I know I am sitting in the living room back here at home. Clearly I had a seizure when I was downtown, which lasted it’s normal 20 seconds or so but then I continued on my way and got all the way home (a 1 to 2 hour trip depending on where I am downtown with multiple public transportation transfers) with no apparent problem but also no memory of doing it. This happened in China, in Korea and in the States as well. It is very strange to be somewhere and not really know how you got there.

Now when it comes to day to day activities my epilepsy is not a great detriment to me. Like I said before I tend to only have seizures three to five times a month unless it is a bad week in which case I can have anywhere up to eight to ten in a week but that is quite rare now thanks to the medication I am on. Also while this is not always the case my seizures tend to happen when it is the most convenient for them to happen. It’s like my brain knows when it can turn off and when it can’t. So if I’m in a stressful situation my brain will wait to check out until after that situation is over. This means my seizures often happen at night or first thing in the morning if I didn't sleep well. So really I can live my life almost as if I don’t have an issue. I never feel the need to bring it up with people unless it actually happens. And even then if a person who doesn't know I have seizures saw me have one they might not even notice or figure it out due to their brevity. Most likely I would just come off as a little odd. The fact is there really is nothing I can do once a seizure has happened. I can’t take a medicine to make it stop or reduce it as one can with asthma but I also don’t have to worry about needing to be hospitalized or anything like that due to how minor the physical detriments of my condition are.  

Now from what I've discovered from my friends and family I've had this problem for most of my life but the fact is I never knew about it until towards the end of my undergraduate university career. It was then that the girl I was dating clued me into what was happening and when I explained it to friends and family members they told me I had been like that for years. I was quite surprised no one had told me about it sooner. I went to a doctor and explained what I could about the issue and was told I likely had some minor form of epilepsy. They couldn't tell me the cause of it because as I said before there is no known cause and without knowing a cause there really can’t be a cure. I was given a medication for my seizures around 8 years ago and have been taking drugs ever since. I've tried three different medicines at this point, I think, and the one I am currently on seems to be the best. It seems to minimize the amount of times I have the seizures. The other thing it does is that it actually helps me feel the seizures coming, which helps me know later on that I had one. Now when I say it helps me feel them coming that usually means I only realize it a few seconds before it happens. Often when I tell someone with me I think I’m going to have a seizure I almost instantly have one. So feeling it coming on really is of no benefit in stopping or curbing the seizures but like I said it does help me later realize I had one because when I “wake up” out of the haze I remember feeling like I was going to have a seizure and I can then put the pieces of the puzzle together faster.

So really, what’s the big deal, right? Well I can’t pretend it is a big deal physically like Priya’s condition is because my condition isn't putting me in risk of permanent physical damage but I have discovered that the seizures have brought with them problems that I constantly struggle with. The number one issue brought on by these seizures is the issue of memory in that my memory is terrible. Now the seizures themselves most directly affect my short-term memory. As I said when I have them my brain stops recording what is going on and I end up not remembering large portions of the day. This has led to many problems especially when I was younger and didn't know I actually had epilepsy. In high school I often got into arguments with friends about things they told me I had said or done, which since I had no memory of them I swore they were making up or were just plain wrong. While I no longer swear I am right about anything this problem persists in that I constantly forget things I said or did and I have to often be reminded of them. This has led to many embarrassing situations for me. Plus as someone who is not a fan of being mistaken it is very difficult to live with the fact that nothing I “remember” can be fully trusted. The fact is everything I think I remember may in fact be distorted whether I know it or not. And there is simply nothing I can do about the stuff I don’t remember it is just a constant issue I have to deal with that I might be and most likely am missing something I should know or be doing.

Now while the seizures most directly affect my short-term memory my long-term memory also suffers. The more holes there are in my short-term memory the more my long-term memory is weakened. I have discovered that when I think back about my past a majority of the things I “remember” aren't actual memories themselves but rather the telling or discussing of memories. I have stories I can tell you about my past but when I think about them most of them come up in my head as words not pictures. What I am remembering is having told the story before or hearing someone else tell it. I don’t remember actually being in the story. It’s kind of like remembering a book you've read in that the pictures you have of the story are pictures you've made up based on the words you read. In a similar way many of the pictures I have in my head are ones I've basically made up based on the words I remember. I won't remember what a person was wearing, or what movie we were watching or what we had to eat that night these types of details just don't exist in my head. There are of course certain exceptions to this but for the most part my long-term memory is one filled with huge gaps and holes that often make it feel like I don’t really know how I got to where I’m at now.

A bad memory is something that brings a lot of stress with it. My closest relationships (wife, family, friends) are constantly being tested as I forget the most basic things such as how their day went, the name of their co-workers/friends, the plans for the next day and many other things. With friends, particularly ones I don’t get to see often, it can be difficult because I often don’t remember things we had done together or spoken about in the past. On Facebook if I hear from an old friend I often have to do some research through old emails to see if I can find out anything about what we last spoke about because I’ll usually have no idea. I've had catch up sessions with friends from high school and college and the most common thing to do is reminisce about the past but the fact is that is very difficult for me because for the most part I don’t remember a majority of the things they want to talk about. I can’t tell you how many times I just go along with a story and say I remember something when in fact I don’t.  Besides with my relationships my bad memory is also a detriment to my work life or potential one. I've been on multiple interviews here in London and I find that while I have all my jobs listed on my resume for the last 5 years many of them I don’t actually remember much of what I did there. I have a list of my responsibilities for all the jobs but most of which are basic generalizations and it is often difficult for me to remember the more specific aspects of the jobs. This has made many of my interviews very difficult.  Perhaps one of the most frustrating consequences of my condition is the forgetting of things I've learned or studied. I went to four years of undergrad school and 2 years of graduate school and yet for the most part I remember very little of what I studied. It’s like I paid those tens of thousands of dollars just so I could tell people about what I should know rather than what I actually do know. When I read a book I can talk about it and recall it quite well as long as I am invested in that topic but once I move on I retain a lot less information than I feel I should.

In truth the strongest connection I have to my past is through my writing. For school I have papers I've written, with friends/family I have emails or letters and with my personal thoughts I have journals and blogs. Writing really is one of the most important things I do because it allows me to maintain a link with my past that I would most likely lose if I chose not to do it. This very piece is a good example because I actually wrote a majority of this about two weeks ago but then I had a very bad week of seizures, somewhere around ten seizures in a week. The week began normally but on Wednesday and Thursday I had numerous seizures and ended up forgetting a majority of what I had done not only those days but the days before that and following it. It was not until I went back to our blog and saw Priya’s entry about her asthma and talked to her about it that I remembered I had been writing a piece about my epilepsy. Really everything going back to the week before is quite hazy for me. Apparently I began reading a book last week and based on the bookmark I got about half way through but when I look at it now I don’t remember any of it so I will have to start over. I’m sure if I read it again things will be familiar but there is just no way to really refresh myself without rereading it. Priya and I watched our weekly TV shows together and I forgot what happened in the episodes we watched so I had to go over them again before this week’s episodes. I Skyped with my parents over the weekend and I had no memory of what things they did and didn't know about what was going on with me. I talked about and made references to things going on in my life that I was certain they were aware of only to find out I had not told them about most of that stuff. I listened to podcasts that had certain information I remember wanting to talk or write about only to now not be able to remember it. I've already re-listened to 3 podcasts from last week just trying to get back what I lost or what I failed to hold on to. The week was so bad that it actually hurt memories dating back much older than a week. I couldn't recall exactly what was going on with my visa paper work or what was happening with my attempts to get a bank account. Even with my search for a job I couldn't recall exactly what applications I had sent in and which I still needed to work on. These are things (visa, bank account, jobs) I have been working on for months yet one bad week of seizures can throw my brain so out of order that I struggle to remember what I have or haven’t done. It really can be quite difficult to deal with. Again my issues do not bring with them any real physical hardships or limitations the way Priya’s do but they do bring real problems with them.

I often wonder what I would be willing to give up just so I could remember my life the way most people are able to remember theirs? I’m sure it would depend on when you asked me but if you asked me today I would say I would be willing to give up quite a lot to rid myself of these seizures and just be able to clearly remember what I did yesterday and what I plan to do tomorrow along with all the other basic memories people have. Unfortunately that is not an option but on the bright side, in a few weeks I’ll most likely have completely forgotten that I even wished for this.