I like receiving information best when in arrives in the form of a similar story. One in which you can clearly get the intended idea in an interesting way. That said, I am making my point by telling a story (so maybe it doesn’t sound like I am preaching, when in fact I am).
Before I my condition forced my retirement, I worked for the medical/health information section of a large software company. I traveled a lot, sometimes weekly, to work with customers on the best way to use the company’s product, or more importantly, how we could improve it. When you are in a major airport weekly, you see just about everything: people in pajamas, bomb threats, animals of all kinds, missionaries, sports teams, and family reunions. I was rarely bored.
After 9/11, airport security became very tight and added to the adventure. At first, it seemed like you had to show your ticket and license at every stop. This one time, though, security was looking the other way.
I was at my gate, in a business suit and probably sitting on my computer case near the boarding door. This was still during the days before you boarded Southwest planes by number. If you wanted a seat up front, which I did, you had to forget the chairs at the gate and line up along the wall, waiting for as long as an hour before boarding.
You had to make friends with the people around you, because if you needed to leave the line for water or a bathroom visit, they would save your place in line. And you had to have all your information in your hand to get aboard the plane.
So, here I am at the gate making friends with the people around me. This time it was mostly businessmen flying out to Salt Lake City, Utah, same as I was that day. The man next to me talked to me about his business. I don’t honestly remember what it was, but I have had a lot of these conversations, so I am reasonably sure he was in some sort of sales position. As the boarding process started, this guy continued to talk about his projects. We walked onto the plane together. I sat up front and so did he, still talking to me.
I am sure I asked questions, because I am usually curious about how others view their jobs. So, the conversation continued. It went on through the entire flight. Then as the plane started to descend, the flight attendant announced we were preparing to land in Salt Lake City. My talkative companion, who was finally not talking, turned pale. “I am going to Phoenix,” he said. Not on this plane, I told him.
Even though this man got through several layers of security and several announcements concerning Salt Lake City, he got on the wrong plane. And they let him do it! He wasn’t paying attention for whatever reason and they allowed him to get on the wrong plane, despite his documents clearly showing he was headed to Phoenix.
So, here is the deal with that story. When I thought of it the other day, in an airport actually, I saw how it describes us trying to deal with our TLE. You can be in the right place, sort of, but if you are not paying attention at all times to your condition, it can send you to the wrong destination. And like the businessman who slipped by airport security, you can’t count on doctors and other caregivers to pay attention for you, to stop you or redirect you.
I am not saying that all doctors don’t pay attention to the needs of their patients. I am saying that it is your health and you should manage it and take responsibility, as well. In the United States, TLE patients have few options outside medication and surgery. In addition, the doctors treating the TLE may not spot or take into consideration other issues, such as developing autoimmune diseases that ultimately impact the seizures and the individual’s treatment choices.
You have to show your information at every turn. Don’t let your frustrations or feelings of being overwhelmed interfere with your ability to keep an eye on what is happening. And more importantly, where you want to end up.
Make sure you are headed in the direction you want to go. Some of those detours can be costly.