“When I used to read fairy-tales, I fancied that kind of thing never happened, and now here I am in the middle of one! There ought to be a book written about me, that there ought! And when I grow up, I’ll write one― Lewis Carroll, Alice’s Adventures in Wonderland
The holidays are always the best of times and the worst of times for me. I love nothing in the world better than being with family, a lot of family, and dogs and kids and cooking and confusion. But sometimes these are the very things that trigger seizures when my body begins to wind down. So today I want to focus on something that I believe is entirely good about this season: Resolutions for the New Year.
As I hear groans in my head probably coming from several countries, I want to point out that the very act of making a resolution is a positive, hopeful act that is supposed to make one’s life, or someone else’s life, better. What could possibly be dull or unexciting about that act of optimism?
That said I want to add a twist to it.
Recently, I read an article I really liked called “Nine Reasons Why Writing a Journal Should Be Your Only Resolution.” The article starts off with a study from the University of Texas that examines the effects of journal writing on fired computer engineers and their abilities to cope with their job losses and find new jobs. The article goes on to list nine interesting and vital ways writing in a journal can and will change your life.
I think this is a wonderful idea and I wholeheartedly support it. But I would also like to take it another step to illustrate how using a variety of writing approaches can change the life of someone with TLE.
A seizure diary is a good place to start. This is a daily record of your seizures. The obvious importance of a seizure diary or a journal cannot be underestimated.
If you don’t already have one, you could try My Epilepsy Diary from Epilepsy.com. It has convenient apps for smart phones, but as of this writing, they’re revising the diary and aren’t activating new accounts until early 2016. This program lets you determine what you want to track. You can list as many types of seizures as you want. That may sound funny, but it’s been very helpful to me.
For instance, I experience a particular type of Complex Partial Seizure when I’m exposed to gluten. The seizure is a lot like being trapped inside a lava lamp for a few minutes. I am aware, but not really able to respond as I see all the colors moving around.
I also have head pain and nausea associated with that particular seizure. I can describe that particular seizure and track it in My Epilepsy Diary. This type of seizure went away when I changed my diet. I didn’t have to guess about this, it was all recorded. When I saw the drop off, I realized the Celiac/gluten issue is, in my case, related to the TLE.
It’s not a hunch; its usable data. And, to follow that thought down the road a bit, the information collected is essential because you are not necessarily going to hear it from your physician. In terms of treating TLE, the approaches and understanding by the medical community is still relatively new. We need to observe closely what’s going on in our own lives to keep on top of our condition.
The second suggestion is related to the article I mentioned above. I advocate keeping a journal of the events you experience as you navigate your condition. How you feel, what you see, what you dream, what you experience are all essential parts of your ability to understand and to determine for yourself if this is a curse or a blessing.
These experiences can also lead to expanded knowledge and a sense of enlightenment as it relates to TLE. Here’s another one of my experiences to illustrate this point.
I sometimes see a corona surrounding objects. I kept track of these experiences so I could ask the neurologist about them, but all I got was a blank stare and a suggestion of hallucinations. When I asked my optometrist, (because I am nothing if not persistent), I was shocked to get an answer describing this experience, not as a hallucination, but as the optical nerve beginning to vibrate prior to a seizure event. It was a trigger event I didn’t know about and wasn’t giving any attention.
By dating and recording in both a journal and a seizure diary, you sometimes can connect events to drill down and figure out what the hell is happening.
And yes, I am aware I am an information junkie, but self-collected information has saved my life a couple of times. It has helped me get through periods of deep depression when the medical community didn’t seem to know, understand, or care what was happening to me. It has made me aware of how very amazing the human brain truly is.
It has helped me view my condition in a more detached way, allowing me to make changes in my behavior for the better. It has returned some much needed control to my life.
I agree with the writer of the article that recording your life can result in all the things you want and a few unexpected gifts that may improve your life.