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One of my last jobs before the TLE took over was working in the Health Information department of a large, international company.  My section of the company designed software hospitals used to collect information about a patient’s condition and to facilitate billing.  I used my years of experience in the hospital to bridge the gap between the software designers and their targeted market, the hospital users. During this time, I learned two important lessons that have stuck with me ever since: the importance of observation and armor.

The observation I learned is called Contextual Design. The person practicing this concept learns to become hyper-observant in an effort to see where flaws exist and what changes could benefit the targeted user, in this case a hospital employee using the software.

I recorded and studied each key stroke, every movement, every mistake, every workaround, each  pause for reference to understand and actually see the software from the standpoint of the user.

There is something very Zen-like about this practice, because not only do you have to be calm and peaceful, but you also cannot have opinions or judgment. The observing person becomes yet another tool in the process to improve the user’s productivity.

Here is the part where I tell you why I think this is interesting to someone who has TLE. People with TLE are all different in many ways, alike in others, but ultimately complicated because of where the disease sits in our brains. I know this, and others know this, but the medical profession is still lagging way behind.

I believe neurology centers should hire people to read the angry rants on Facebook to understand what health care is not being providing us. Or maybe they could try their own form of Contextual Design, putting away judgement and opinion to observe minutely and record information about the individuals they are treating. Perhaps then neurologists would stop putting patients on the defensive and begin to truly understand the huge array of symptoms, the incredible variety of seizures, and the complicated emotional responses the accompany them.

Every day I open Facebook to read entries of fear, emotional pain and physical devastation that seem to me to be unnecessary and tragic. I truly believe the field on neurology would benefit from CD after ten years of daily studying and tracking my own disease, while at the same time suffering from fear, a lack of self-esteem and, at times, barely suppressed rage.

The concept of armor is the other issue of importance I took from my former job. When I worked in New Mexico hospitals, I wore whatever I wanted and as long as I had pantyhose on nobody said anything. When I went to work for the “company” I was told in no uncertain terms that I had to make some changes. No more purple zippered jackets, no more Navajo skirts or concho belts, no more Day of the Dead necklaces, and certainly no red go-go boots.

My “artistic” attempts at asserting my personality in the sterile hospital environment were viewed as just plain bad. I was told to wear nice black or navy suits and use silk scarves. My shoes, watch, and purse needed to be good, as in not cheap or trendy. I had 3 seconds I was told, to make an impression and bad clothes would prevent the clients from developing a respect and trust in my abilities.

I absolutely believed this when I listened to the harsh comments of these clients about other consultants or even individuals in another department. One of the smartest women I knew at the time was ridiculed after she left the room because her white shoes were scuffed and her lavender blouse needed pressing. She had just made an impressive presentation that required a lot of work and imaginative thought, but all they could talk about was her choice of outfit for the day.

So when it came to clothes I absolutely followed the rules. These clothes became my armor. They were supposed to save me from that horrible pack ridicule. They were supposed to present a persona of experience and intelligence, of competence. They were supposed to protect me.

When I was diagnosed with epilepsy, I found the armor I was using was worthless. Clothes had no power over epilepsy or its stigma. They could not deflect the problems I would encounter when others found out what I had or help me deal with an uncaring and uniformed physician. No Coach purse or Omega watch was going to change any of it. As a result, I was hit with two sudden revelations: I had epilepsy and I had nothing to protect me.

As I have mentioned before, I am nothing if not resourceful. So, I began to build another suit of armor. This time, though, I did not realize what I was doing. Ten years passed before I was confronted with the evidence of my daily work. I found I had compiled a dedicated computer library of studies, papers, books, and articles about TLE.

The other day I was sorting through my computer bookmarks because they had gotten overwhelming. I decided I would go through the articles to know what to save and what to delete. I wanted my reading time spent to be more organized. The first links were clearly years older and the information in them was well-known, but when I moved to delete I broke out in sweat and felt sick. I had to stop, leave the office, and think about it before continuing. It was then that I realized I had traded the armor of the clothes for the armor of the references. I must have felt that in addition to helping me understand my disease it would also protect me from those elements that are so hard to deal with – indifference, disgust and to a certain extent, ridicule.

Maybe. Maybe the armor did help if only to give me a sense of truth in a very uncertain and complicated situation. I know that observation helped and certainly does any time I need to use it. It gave me the tools to view my own circumstances. My husband always says that nothing is ever wasted, no information that we learn is ever useless. I am finding more and more that this is true, and I believe each of us has unique tools from our past to use to create a better situation for ourselves.