Armor and Observation

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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.

 

 

Waiting Around for Normal

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There is always a temptation to write in the “we” so it sounds less pointed or personal, but I am afraid it’s just me saying the things I intend to say today.

There is no “we” in this case, only me outlining my weaknesses with the hope that someone out there will find my words useful.

I see what people write on Facebook sites all the time. Their entries run from ridiculous to frightening. Most of the time they ask questions, wanting answers about doctors, medications, their own seizures, and, finally, what is normal.

My sister says normal is merely a dryer setting and not a true barometer for one’s life. I tend to agree with her on that; but, for just this moment I would like to look at “normal” as the way the rest of the population perceives the world without distortion or filters of fear, anxiety, pain, self-loathing, and a kaleidoscope of memories and impressions that sometimes pours in.

I am talking about looking out the window, seeing a blue sky and green grass, neighborhood buildings, and perhaps hearing the sounds of children playing or neighbors leaving for work. Along with these sights and sounds are thoughts centered on a busy day, planning a meal, or feeding the dog. Nothing more. This is normal for me, and I wait for it, cherish it, and wonder at it when it happens.

I begin my day looking out the back window into the world outside, but I never know what my brain will tell me. Many times my thoughts are overlaid with feelings or impressions of the past. I look outside and I see a neighborhood in Houston, but my mind, my emotions, tell me it’s a cotton field in Arkansas, a parking lot in Louisiana, or a dorm in Indiana.

Until my diagnosis, I thought other people lived like this. After my diagnosis, I realized there is a difference between remembering something and experiencing something mentally that is out of your control. I now know this experience is part of the seizure cycle. For those of us with TLE, the seizure is only part of the disease.

I have a theory based on no medical information, just observations from my experiences. My theory is that when temporal lobe seizures strike, in an area of the brain that stores memories and emotions, they irritate surrounding tissue, and that is what we see, feel or think following our seizure.

Once, while I was still working, I went through a horrific meeting filled with a lot of yelling and nastiness that would have been more suited to a day care than a healthcare corporation. I got up and left the meeting, aware that I was going to have a seizure. I went into a stall in the women’s restroom looking for a measure of privacy so I could pull myself back together. It was there that I had the seizure, the electricity flowing over me for a moment, along with the nausea and the pain.

But it was what happened afterword that I found really interesting. While still in the stall, I was mentally transported to a job I held right out of college. I could hear the music that was on the 8-track player, smell the dyes in the clothing, and I see the face of a woman I hadn’t thought about in years.

Her name was Alice, and she had these really long eyelashes. At that point I saw her so vividly I could have counted each lash. Clearly, this memory had something to do with the seizure because it had nothing to do with my day or the experience of the meeting. It was completely random.

And so it has always been for me with these emotions and impressions that I cannot control. I have learned to talk to myself about this when I am in the cycle so I am not carried away with what I feel or sometimes see. Policing my thought, as as it were.

It is the “normal” that I use to gauge where I am in the seizure cycle. An absence of uncalled memories has become a beautiful thing. It’s the normal I wait for each day, hoping it will stay awhile. The normal outside of the seizure cycle allows me to be in control and not the other way around.

So I wait. The music of Ben Fold’s Annie Waits running through my head: Annie waits for the last time / Just the same as the last time. / Annie says “You see this is why I’d rather be alone.”

A News Year’s Resolution

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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 oneLewis 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.

It’s a Paradox

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“That’s the reason they’re called lessons,” the Gryphon remarked: “because they lessen from day to day.”
Lewis Carroll, Alice’s Adventures in Wonderland

Discovering I had Temporal Lobe Epilepsy was a huge event in my life. It was that watershed moment that changed everything from “before” the discovery to “after” it. I did not experience the next all-important discovery in a single event. It snuck up on me leaving me confused, angry, and eventually distrustful of my doctors. I suspected there was something, but I didn’t know how to frame it or describe it. It was my husband who was quantified the issue one day as he made up a chart.

“Look at this” he said as he showed me the very long spreadsheet he had been working on. We were getting all my information together for yet another visit to a new neurologist. One column contained all the drugs I had taken over the years. The second one listed my reaction to the drugs.

“You have the opposite reaction to every drug,” he said.

The data showed what I already suspected: Opiates caused severe pain, along with aspirin, Ibuprofen and many of the common migraine medications. Antibiotics had a similar result. Medications that were supposed to calm me actually over-excited me and caused increased heart rates. Sleeping pills kept me awake. And finally, anticonvulsants seemed to increase seizures.

The neurologist ignored the list when we showed it to her. My husband explained the problem, but she wasn’t interested. She ignored us and the data, and she refused to discuss it. She continued to prescribe anti-seizure drugs until a near-suicide scare jerked some sense into me and I left her.

None of the my doctors understood what I was telling them, not my regular internist, not the Urgent Care doctor, and not the cardiologist in the hospital where I ended up when I mistook a seizure for a heart attack. They all looked at me as if I was crazy. . . or making it up.

Then, as a result of this blog, I talked to a pharmacist who also had TLE. When I described the drug reactions, she told me it was called a Paradoxical Reaction. I couldn’t find very much information on it at the time. Today, a search will return more information, mostly dealing with antidepressants.

My pharmacist friend did a huge favor for me that day. She gave me back some confidence in my own observations. She made me feel “not crazy” as opposed to the way the doctors had been making me feel, which was definitely “crazy.”

Once I understood that I could count on this observation, I began to look at the seizures I was documenting each day, and the ones I had documented from the beginning. I was definitely seeing a change in the way I reacted, what I saw, how much pain I experienced, and so forth. I began to wonder how many of the seizures I experienced in the beginning were generated by the anticonvulsants. The number and severity of the complex seizures fell considerably once I got off all medications. While I continued to have seizures almost daily, I rarely lost consciousness.

During the last ten years since my diagnosis, I have stopped eating gluten and started living a rather secluded life. Some issues are worse and seem to be influenced by small things like light sensitivity. Others are definitely better with lifestyle changes. I cannot help but wonder, though, how many other people out there continue to have the Paradoxical Reaction because they’re not receiving informed care from their physician.

I can’t be the only one.

Fear and Loathing in the Seizure Cycle

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A couple of weeks ago I learned a severe lesson. It was valuable and interesting, but difficult to appreciate while I was living through it. I wanted to put it out into the blog world because I can’t believe that I am the only one struggling with these outcomes.

While each of us is different, in as much as our brains and personalities are different, some responses have to be similar. Knowing that others experience and survive the same things often soothes the loneliness and fear that accompany my condition.

For me, this episode began with good things, as my problems often do, with too much family, too much laughter, too much noise, too much movement, and just a bit of confusion. I feel my adrenaline level rising. Why not? I am happy, and I am responding like any other human being to happiness.

But adrenaline is a trigger for me.

I went to bed tired after a satisfying day of food, baths for dirty grandchildren, and the hilarity that sometimes arises from combining kids, water, and a dog. I woke up to a starburst of intense pain and fear. Although I had not opened my eyes, I couldn’t see anything but the inside of a star.

I needed several heartbeats to recognize the intense pain that came from within and radiated out of my body in electric waves as if I were some type of electrical conductor. Intense fear followed. I was mindlessly afraid, but I didn’t know why or of what.

The pain and the fear took my breath away, literally, and I started choking. At this point, my body’s survival mode kicked in and I pulled my attention away from the star and moved my body.

Electricity washed over me again and I opened my eyes.

I took a deep breath and told myself I had a seizure and I needed to calm down, that absolutely nothing I was thinking or experiencing was real.

Talking to myself usually helps. It didn’t this time. A new wave of electricity hit men. Then the waves came quickly as if someone was using a Taser on me. My chest and head began to hurt even though the earlier pain was receding.

I began to argue with myself. One side wanted me to wake up my husband in case I was dying; the other side was calling me stupid and accusing me of overreacting. You have temporal lobe epilepsy, I told myself, so this is what it is.

Pretty soon, my inner dialogue became strange, or stranger, so I did the responsible thing: I got up, stumbled to the bathroom and took a tiny dose of Valium, my “rescue medication.”

The electrical shocks hit me another couple of times before I felt my body relax, my breathing become regular, and the pain lessen. The Valium had saved me from a series of seizures, but the problems had just started.

I no longer take drugs for my seizures, prescription or otherwise. The Valium is strictly for emergencies. The reason is both simple and complicated. I have Celiac, an autoimmune condition secondary to the TLE. This is relatively common. I read somewhere the other day that as many as 30 percent of epileptics may have Celiac, and that neurologists should automatically order Celiac tests for new patients.

As I understand it, Celiac affects the way the body absorbs or reacts to medications. In addition, untreated Celiac can cause seizures. I noticed that I had a reduction in a certain type of seizure once I started treating the Celiac. It doesn’t return unless I am exposed to gluten. That’s the simple part.

What is not so simple is that in addition to, or probably because of, the Celiac, I have a autoimmune reaction to all drugs. My body reacts badly, treating the medication as a poison and sending me into a seizure. Even anti-seizure drugs cause them. Anticonvulsants will stop the initial seizure, but they will cause rebound seizures with very nasty side effects.

I took Valium a couple of times a week for several years. I cut my pills into fourths thinking I was keeping the dosage low enough that I wouldn’t get hurt. But recently I began to question its effectiveness. I thought I should probably take it only in an absolute emergency, that way I would preserve its ability to help me when I needed it the most. It was really the last option left to me other than cannabidiol (CBD) oil, which is still not available in Texas.

I saw a change during the three months without Valium. I recovered quickly from seizures, even though I was more uncomfortable around the seizure episodes. I was no longer depressed and in constant pain. I began to take for granted not experiencing pain in the evenings, not feeling the weight of fatigue or the hopeless that often accompanied the seizure cycles.

Back to the nightmare.

Once I took the Valium, I knew the situation would be prolonged. I just did not know what would happen. I found out the next morning. I felt like I had been hit by a truck or had someone take a baseball bat to me, or both. And, worse, I felt hopeless, seeing images of death weave their way into my thoughts.

But typically, I did not catch on. I was ill-tempered and tired, but clueless. The depression deepened. I began to play solitaire, which should have been a signal. But that went unnoticed, too.

Then my phone dinged with a notice from Facebook. I checked my account to see a handful of people had “liked” a picture I had posted the previous day. I became unreasonably angry and suspicious. And confused. I was really mad, but I didn’t understand why. I believed my Facebook contacts were the cause of my anger, suspicion, and confusion. It was at this point that I realized I was in another seizure cycle. The Valium was creating auras and I was ramping up for another seizure or series of seizures.

The Valium removed the immediate problem the night before, but it restarted the process, this time with a really negative aura. The only thing to do at this point was to shut down and wait, remove myself as much as possible from others, and let my family know what was happening.

I reminded myself that I could not trust any perceptions or feelings. I did not bother trying to draw, because I knew it would result in a distortion. I colored in an adult coloring book, trying to allow the slow movements and the colors to work their soothing magic on my brain. I listened to audiobooks and did yoga.

Eventually, I had another seizure similar to the one that started the whole thing. It was less painful and resulted in only one episode. This time I didn’t take the drug.

The next morning I woke up and took a physical and mental inventory. I felt hope, I felt creativity, and I felt happiness. There was some pain, but I believed it could be worked out.

Lesson learned.

The next time I will know the price of trying to stop a seizure. Like Alice when she leaves the Mad Hatter’s Tea Party and says to herself, “I will manage better next time.”

Relax, I’ve Got Your Head

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Last week I went to the hairdresser. This outing with my husband is always a diversion for me since I am rarely able to leave the house. I enjoy interacting with people other than family members for a change, so I tolerate the trip into the city. I also like Trey and her shop in an old house.

While I was leaning back over the shampoo sink, Trey said “Relax, I’ve got your head.”

It was one of those things that immediately started up my brain. It sounded like the common saying, “I’ve got your back” that we are used to hearing, whether it’s in the workplace or at home. I think we would all agree that it means the other person is willing to protect you or stand up for you in a particular situation.

That said, the thought came to me that “I’ve got your head” could mean quite a bit more to someone with our particular seizure issues.

Think about it for a minute. It could mean that the other person understands and supports your personal struggle with seizures. The person has your head, is there to look out for you when you can’t always be alert enough to look out for yourself.

So as Trey washed my hair, I thought of who had my head.

The first thought was one of regret and resignation that I did not have someone like that in the medical field. I have not been able to find a doctor recently who did not want to write a “script” and have me move on after my seven minutes were up. This has always puzzled me since issues with the brain seem to me to be much more complex than other issues with other organs simply because our consciousness is encased within our brain. Maybe the fault lies with the fact that there seems to be little specialization within the field of Neurology, when one would assume that there would be more specialization due to the complexities encountered.

After putting that unhappy thought aside, I thought about who does have my head. The image of my husband came to mind. His thoughts are always for me first, and how events and surroundings will affect me. I feel sometimes as if I live within a snow globe, encased in glass. Something will occur to shake up my world, turning it upside down, but I am still in it. I never get out. And he is probably the only person who truly knows this since he lives with me from day to day. He can see how even the smallest things impact me. He sees what I hide from others.

Then there’s my family. This condition has brought home strongly how close a family can be. I see all the things they do to bring me into the group or help me live my life productively. Each person has contributed to my struggle with expressions of love and help. Each has given me some valuable personal talent to guide me back to a meaningful life.

Along with family, I have a few friends who have been with me over the years and have experienced the frustration of seeing me change from a seemingly normal individual into someone with special needs and an uncertain personality. They have stuck with me through the worst. They have my head, too.

There is the saying that if people see you at your very worst and still love you, then they are true friends. Well, I have true friends. Not a lot of them. There were plenty that ran off when the problems started; but, the ones who stayed are worth everything to me.

So, in thinking on this deal about who has my head, I have gone through an exercise of gratitude. But who or what is the most important point of the exercise? I realize that it is my belief in a personal God. I believe that God has my head and has helped me through the changes that this condition inflicted on me and my family. Every time I reached a point of giving up, I got a message or sign pointing the way out. These signs were things like research papers posted on the Internet, something someone said that started a productive thought process, an intuition about a situation that led to an answer, and so forth.

I went from roaring right up to the threshold of a mental breakdown to a logical understanding of what is happening, what it affects, what other conditions I have developed as a result, what to take and what not to take to work toward a more normal and peaceful life, and most days an acceptance of the situation.

I didn’t do it alone; I had to develop an inner peace and self-confidence that would allow me to accept the answers I find. Could I have done this on my own? In a word: No. Without my belief in God, I would be still locked within the breakdown.

Recently, I saw a post from Byrn Mawr, apparently by a person who doesn’t have TLE:

“It’s instructive to observe the people who have Temporal Lobe epilepsy and related brain damage. Despite their awareness that this damage causes hyper-religiosity, they persist in religious behavior. They are so controlled by their damaged brains that they rationalize that they continue their religious beliefs because they choose to, and claim that the brain damage has nothing to do with it.”

Wow. My first thought is that this person’s karma is going to be rough. But, as for me, I am OK. I have an abundance of love from people who “have my head.”

I also have my belief that God is with me and will use this situation for good. So He has my head, too.

 

 

Hero of Your Own Story

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Ten years ago today I was suffering from terrible pain. I thought I had developed intractable migraines, which I probably had, but with a twist: seizures.

I experienced various types of simple seizures throughout my life without understanding them. I was told by a psychiatrist, without the benefit of a neurological exam or even an in-depth psychological evaluation, that I was hysterical. Because of this pronouncement, I experienced a great deal of shame and did not offer a full medical history when seeing doctors about my migraines. I kept things under wraps until ten years ago when the dam broke and all the pain, hallucinations and partial seizures took hold of my life with a vengeance.

It’s been a long ten years in many respects, and now I choose, because each of us can, to see myself as the hero of my own story.

When I think of heroes, I think of Odysseus, the Greek hero of the Trojan War who experienced a fantastic ten year journey when he left Troy to return to his native Ithaca, Greece. I was raised on the Odyssey so I know him. I like him. Odysseus is not your average superhero. His success comes not from being powerful or brave, unlike the superheroes of today, but from being clever and resourceful.

If I were to compare my ten year journey to his, I would start with the resourceful bit. I have a lot of resources, particularly the Internet. Am I clever? Well, my college classes taught me to evaluate and understand statistical studies and to separate opinions from facts. So yes, I would consider myself somewhat clever and certainly resourceful, like Odysseus.

He and I have a lot in common. The initial emergence of epilepsy into my life was like being attacked from all sides. It was my Trojan War. There was a great deal of pain; hallucinations that I recognized as hallucinations; hallucinations that I thought were real; partial seizures where I lost consciousness for a moment; nausea; muscle pain; fear; a lot more fear; anxiety; insomnia; generalized seizures; personality changes.

This was a war my mind perpetrated on my body.

I felt like I was at war with myself.

At first I thought my war ended with the diagnosis and the administration of medication. I was like Odysseus in this misunderstanding. We thought we had won and it was downhill coasting from there. Neither of us realized the most challenging parts of our lives were coming.

As Odysseus attempted to sail home with his full complement of soldiers, he encounters situation after situation that test him and his resourcefulness. His first stop was on the island of the Lotus Eaters who gave a drug, the lotus leaves, to his men, leaving them stoned and unwilling to move or work to get home.

Once he got them out of drug haze and back on the boat, he stopped on the island of the Cyclops for water where the single-eyed monster took him captive, ate a few of his men, and caused a lot of problems as the group escaped.

Aeolus gave Odysseus a bag of winds to blow them home, but his men opened the bag at the wrong time and blew them all off course.

On the island of Aeaea he met the dangerous goddess Circe who gave his men a potion that turned them into beasts, literally. It took Odysseus a year to work that one around to his advantage before he returned his men into human form and got back on the boats.

Next comes the land of the Laestrygonians, who happen to be cannibals. Only Odysseus and the men in his boat escape them.

His fighting force from Ithaca is now reduced to a single boat. He journeys to the land of the dead and has a few heart-to-hearts with various key individuals in his life before the gods allow him to move on.

After this, he is immediately put in the path of the Sirens, creatures who sing sailors to their death on rocky shores because their pull is so irresistible. Here he plugs up the ears of his crew with wax, but ties himself to the mast so he can hear their song. His intellectual curiosity is satisfied, he’s a little crazy by this time, but he is safe.

Still losing men along the way, Odysseus must sail between Scylla, a six headed monster who swallows sailors as they attempt to sail past, and Charybdis, a tremendous whirlpool.

Then his boat stops at the Island of Thrinacia, the land of the sun god Hellos. It is Hellos’ cattle that graze there and everyone is forbidden to touch them. Of course our hero cannot control his men, who all die after eating steak for dinner.

With his men dead and ship destroyed by Hellos, Odysseus is stranded on an island with Calypso, a witch, although an attractive one, for seven years. Calypso is eventually convinced to release him to the King of Phaeacia who equips him to return home.

When Odysseus gets to Ithaca ,he finds his palace overrun with slimy suiters trying to marry his wife and murder his son. He is a stranger in his own home and at first no good to his family. He must once again use his resources to break free of the bad, confining situations and to reunite with his beloved wife and son. His wife Penelope has been waiting for him all these years and is ready to resume their life together. We leave Odysseus successful at last after his ten year journey.

So if you have stuck with me this long, you may have some idea why I compare my odyssey with Odysseus’s.

I start my journey after the “war” on my body with doctors who prescribed a variety of drugs. And like Odysseus’s crew on the Island of the Lotus Eaters, I soon fall into addiction. I had to forcefully withdraw from most of the drugs to move on, to improve.

The Cyclops reminds me of some of my medical treatment. I felt like my doctors were not really seeing me or understanding my condition. I barely escaped with my life a few times, quite literally.

Often well-meaning research has “blown” me completely off the path and made my journey more difficult. I encountered the dangerous goddess Circe and was turned into a beast with some of the anticonvulsants that triggered rage and suicidal impulses.

Along the way I have lost men. By this I mean the soldiers we all have that shore us up and keep us going. They are personal and professional successes, talents, abilities, income, friends, family, job, self-esteem and self-worth (those wonderful twins), and anything else you can name that truly impacts your life.

I have been to the land of the dead to have conversations with those I lost in an attempt to understand where my life was going. Yes, technically I was having seizures at the time, but that doesn’t change the need for the answers.

I continually heard the Siren’s song. It told me that if I were to take the drugs and the painkillers I would be better, happier and all problems would cease. Oh, and they said I could smoke and drink Vodka too.

I sailed between the monster of lapsing into permanent illness and the whirlpool of becoming so caught up in my research that I lost sight of myself as a person.

I have had doctors destroy all that I built up as they act like the sun god Hellos, not wanting me to wander into their territory no matter how hungry I was for answers.

I have felt the stalemate of life passing with no purpose, no matter how easy it looked from the outside. Calypso seduced me into a level of numbness for a while.

Like Odysseus, I finally made it home to find my palace in confusion and realizing I must fight my way back into my family’s life and heart. Odysseus does this with a giant bow, a weapon associated with the heart. He also took the disguise of a beggar. I did as well. I had to humble myself to understand how I was going to weave my family back into a whole piece after my illness had almost destroyed it.

In the end, Odysseus found his way back to Penelope. Here, the character actually means two things to me. First, I see my husband as Penelope, never giving up despite falling into depression. When I finally came home I was accepted as was Odysseus. I also see Penelope as the healthy part of me that has been waiting through the last ten years to surface. “I was here all along” she says, “waiting to step back into you with the knowledge that you will be OK”.

And I am. I am the hero of my own story. So are all of you.

Jamais Vu

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Not long ago, I was talking to a physician in the hospital about my temporal lobe epilepsy. He would not admit it, but he did not know much about TLE because he kept trying to convince me that I did not have epilepsy.

As a matter of fact, he refused to believe my MRI. He wanted me to believe I was the victim of some unremembered sexual assault (which was purely “grab at any straw” speculation because we had not discussed anything about my past not directly related to my TLE and treatments). To this doctor, I couldn’t have TLE because he didn’t know anything about it.

He said something else that caught my attention when I stopped reeling from his response. “Well, you know, most people experience déjà vu. It doesn’t mean that you have epilepsy.”

(Quick note. Déjà vu, from the French for already seen, is the strong sensation that you have already done or seen what you are doing or seeing at the moment, which may not be true.)

I laughed and said that I didn’t have many déjà vu experiences as a rule, but I often had jamais vu. As he looked at me with a puzzled expression, I realized he didn’t know about jamias vu. That’s when I began to think about what jamais vu meant to me and how often it was recognized in other people.

The best definition I have seen of jamais vu comes from the Merriam-Webster Medical Dictionary, “a disorder of memory characterized by the illusion that the familiar is being encountered for the first time.”

When I look back at my jamais vu experiences before my TLE diagnosis, I remember a great deal of shame and embarrassment.

I did not have incidents where I failed to recognize a person I knew, which is often the example you find when looking up the term. Instead, it was always an act or a process that completely caught me off-guard, like the time I went to dial the phone (in the days of a rotary dial) and just looked at it, having forgotten how to use it. I felt frozen in the moment as if something had gone terribly wrong, but I didn’t know what.

The fact that I remember that incident all these years later is probably an indication that it resulted from something other than stress, which happens to all of us at some time. I have looked out at an audience of 500 individuals waiting for me start my presentation, only to forget what I was going to say. That is a stress-related incident, which is probably not what we are talking about here.

I am not sure how you can really separate a stress reaction from jamais vu in some circumstances. I’m not a doctor, remember?

Other events are easier to label jamais vu:

  • Hearing words, as a child, and not recognizing them;
  • Forgetting how to put a key in the lock on my door; and
  • Leaving out the main ingredients of a recipe, such as eggs in deviled eggs.

The deviled-eggs incident happened after church when I was supposed to fix the eggs for lunch. I had all the ingredients except the eggs. I was staring at the bowl when everyone came home from church, trying to figure out why my eggs didn’t look my mother’s eggs.

So, people labeled me as acting dumb or being dopey. And honestly, I believed them.

My anti-seizure drugs, or anti-epilepsy drugs (AEDs), actually caused me to have more seizures, which caused me to have more jamais vu when it came to recognizing and identifying common objects like a table. I knew what the table was, but I couldn’t reach far enough into my memory to grasp the name.

These days, my jamais vu usually involves seeing something that I have looked at every day, sometimes for 20 years, and thinking it is new, having no recollection of having seen it before.

A small area of chipped paint on the bathroom wall is visible only when I’m taking a bath. This chip has been there since we moved into the house 18 years ago, but more than once I have looked at it and gotten upset about it. And I would be upset for about 30 minutes before I remembered it was not new.

I look at books and wonder when they showed up. I see a picture on the wall, one I pass by several times a day, and go into near hysteria trying to find the old one that should be there, only to realize I gave it to my daughter years ago, which I had forgotten during the better part of the hour I spent tearing up the house looking for it.

Needless to say, I try to stay as quiet as possible about my “discoveries” until I can figure out if they are true or the result of a seizure. Thankfully, my husband has some indication of the distress on my part and will patiently help me reconstruct an event when it seems that I am not going to pull it back in myself.

It is because these episodes bring distress and confusion that I think it’s important to recognize they are happening. It’s my opinion that jamais vu slips through the cracks when we’re looking at all the other aspects of TLE.

If jamais vu is a simple seizure, you should be aware that you are having one. If you are like me, it’s also good to know you are not just being ridiculous.

You can read about jamais vu if you search online long enough. And when you do, you’ll find many theories on what is happening, some of which are ridiculous, in my opinion.

But, more important, if it is happening to you, look at it, remember everything you can about the events surrounding it, and come to your own conclusions about what it means for you. Don’t let people label you as being dumb or dopey or any other label that makes you feel badly about yourself and your condition.

TLE is difficult enough without having to deal with the belittlement from others.

Medical Wilderness

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Every major religion tells the stories about individuals who travel through the wilderness in search of guidance. Whether you are Christian, Jewish, Buddhist, Moslem, Native American or any of the countless other faiths that populate the globe, you have a story about a spiritual wilderness journey that provides answers to the individual with the strength and patience to withstand the trials, the physical adversities.

The wilderness is where the individual seeks to connect with others on a higher level, to benefit from their knowledge, to reveal the sojourner’s highest and best self.

In a spiritual wilderness, the individual has stepped out of the comfort zone, the preferred environment, and will experience physical and spiritual discomfort, loneliness, impatience, frustration, and doubt.

Since I am a Christian, I am most familiar with the Exodus stories of the Jews during their 40 years in the wilderness; and of Christ in the wilderness gathering strength for the ministry to come. But there are many other wilderness accounts, such as Buddha under the Bodhi tree waiting for answers, and of Native Americans alone in the desert seeking direction for their lives.

I believe that those of us with Temporal Lobe Epilepsy will make a journey through a medical wilderness at some point in our life. We may have different reasons, but the goals are the same: enlightenment and revelation.

When I began to think of the concept that a spiritual wilderness and a medical wilderness have a lot in common, I looked for a definition for medical wilderness, but I only found links to wilderness medicine. Not the same thing. How odd that this concept is not common.

If you take the criteria for a spiritual wilderness that I mentioned earlier and apply them to a personal medical crisis, they fit. How many of us knowingly walk into the unknown wilderness when looking for answers to questions that go beyond medication lists and physical limitations? We are alone in this and it’s up to us to move through it. We wait, we research, we read, we think it through thousands of times trying to reach a logical conclusion. We reach out to others in an attempt to gather information from those who have done this before, hoping someone will understand and give us the information that fits our personal challenges.

Many of us see each day as a physically challenging event and work to find the patience to fight bitterness and anger. We seek, all of us, at one time or another, to understand how TLE fits into who we are and how we are to live the rest of our life.

We all want to rise above the stigma and accept the gifts.

In simpler terms, we are often lonely, in pain, depressed, ashamed, and in the dark (mentally, emotionally, and spiritually). We are often reaching out for more information, more understanding, more self-awareness and more compassion from other and from ourselves.

TLE is not just a chronic illness that a pill can modify or cure. It is a condition in our brains that impacts not only who we are as individuals, but also the way we see and understand the world. Even when seizures stop, the TLE personality continues to exist.

Because it is in our brains…

The Colors I See

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LOG“at any rate, there’s no harm in trying.”
Lewis Carroll, Alice’s Adventures in Wonderland

This last week I embarked on a journey of sorts to fix, once and for all, the problem I have with light. That sounds like such a tall order, and it is probably unrealistic to expect to find a quick solution. But I wanted this solved and as so often happens when I set out to solve a problem, it usually gets bigger, more complicated and more convoluted. My problems with light are no exception.

If you drink much from a bottle marked ‘poison’ it is certain to disagree with you sooner or later.”
Lewis Carroll

In the beginning, as a five-year-old-child, I had terrible headaches. I didn’t know I had headaches exactly, I just knew that I was feeling bad when others were feeling good. I also noticed that direct sunlight made things worse. My grandmother used to call me a “a child of gloom” because I loved cloudy or rainy days. I also loved to swim and, oddly enough, found that under the water the harsh South Arkansas sunlight was filtered and softened in a way that always comforted me.

My grandparents took me on a cross-country car trip when I was twelve. All I remember about Arizona was pain. Some thirty-five years later, traveling on business, I felt the same way.

Migraines became my way of life. I tried everything to stop them. At one point, a doctor prescribed belladonna, a potent poison, and even that didn’t work. I was unable to respond to any drug that helped migraines. In time, my doctors moved on to narcotics to treat the pain and I found out quickly that this was a bad idea.

Finally, after a two-month period of continual pain, my doctor suggested Botox injections and washed her hands of me, my frantic calls, and my unsolvable medication problem. At the time, Botox was new to migraine prevention. I got a good doctor who actually knew something about the face and had experience with the medication so I wouldn’t look like a stroke victim.

In the 15 years that I have been going to her for the shots I have done a number of experiments with positioning, learning my own lessons about what works and what makes them worse. Overall, I have been very relieved. Relieved of pain.

There is, however, one issue with the shots that I learned the hard way. Botox stops the migraine pain at the point of injection, but it doesn’t stop all the other associated issues. For example, with me, it won’t stop the nausea or the aura. It’s as if the migraine is going on, but you just can’t feel it, so everything that would happen with the migraine is still there.

All of this is old information. Old and taken for granted. So I was surprised when it became relevant again last week.

When the epilepsy broke through in 2005, one of the more extreme symptoms was an inability to tolerate fluorescent light, TV movement, computer screens, etc. I am not even going to talk about video games, movies in a theater, or nightclubs.

Of all the light-related issues, the fluorescent lights are the most serious. A five-minute stay in Hobby Lobby had me moving with a limp, running from my husband in confusion, and suffering a partial seizure. More than once I am a bit ashamed to say, since I like their wrapping paper.

Grocery stores, pharmacies, fast food restaurants, schools, church halls, and retail stores are all out. My husband has to shop for groceries alone each week. I have become dependent on Amazon for things like vitamins, reading materials, art supplies, and birthday gifts. Any trip to the doctor, the optometrist or the dentist will result in seizures unless I take my rescue medication beforehand, and then I’ll suffer later from the effects of the medication.

I assumed that since I had epilepsy AND I was photosensitive that the two conditions were connected. It seemed logical since my light sensitivity got worse after the temporal lobe epilepsy broke through.

So, this week I decided I would solve the problem. It began with my optometrist. He claimed that grey lenses would do the trick, that for years people used them for this purpose until they fell out of fashion or favor. He’s been doing this for many years, so I believed him.

Next, I looked at research from the National Institutes of Health. A paper there listed blue as the best color having beat out grey, amber and brown. That made sense to me since I had brown/amber lenses specifically for fluorescent light problems and they did not protect me.

Onto other research from Utah that said pink or rose colored lenses work best.

Anecdotal information claimed brown worked better.

I literally spent the better part of two days going from one link to another trying to determine what color I should use. During this process, I ordered some fit-overs in grey/blue to help until I could have prescription lenses ground in the color I thought I needed. I thought blue might work since amber didn’t seem to be doing it.

The grey/blue fit-overs worked moderately well. I experienced problems in only one out of three places with fluorescent lights, which afforded me a good measure of freedom. So, I thought I would select the blue color, given my moderate success.

But no, my daughter argued. A pair of glasses would cover about half of my vision field unprotected. She wanted me to stick with the fit-overs that definitely covered almost all of my field of vision. The problem there was that I thought I looked like a bug. I received a withering look when I mentioned it. (I thought of the Rolling Stones song that says “you can’t always get what you want, but if you try sometimes, well ,you might find you get what you need.”)

OK! Blue fit-overs. Then came the next problem.

During all the research on colors and seizures related to light and so forth, I came across a type of migraine called a Hemiplegic Migraine, a migraine that paralyses one side of the body, causing a temporary weakness. It may affect the face, an arm, or a leg. And, it may bring with it numbness or that “pins and needles” feeling.

Along with the physical effects, the hemiplegic migraine causes symptoms similar to those of a stroke, such as speech difficulties, vision problems, or confusion. Doctors say these symptoms usually go away after about 24 hours, but can last as long as several days.

“Who in the world am I? Ah, that’s the great puzzle.”
Lewis Carroll, Alice in Wonderland

I was stunned. This sounded a lot like what I thought was an aura preceding a seizure. I suffered greatly from these symptoms to the extent that I even had right-sided nerve damage in my arm and leg detected by an EMG. At the time the neurologist asked me what had caused the damage. I remember looking at her thinking “aren’t you supposed to know the answer to that one?”

The nerve damage, my substantial history of migraines, my symptoms of weakness, pain, pins and needles, and a fever-like feeling that lasted for hours had gone unidentified with all five of the neurologists who had treated me from the beginning.

So what was happening here? Was I having these Hemiplegic migraines but not aware of them because of the Botox? If that was the case, were these migraines eventually pushing my body into a seizure each time? Was I having a seizure that was the result of the migraine activity and not the epilepsy? Were all the symptoms the result of the epilepsy? Were my migraines just the garden-variety?

Was I a hypochondriac? Or, did I just find an important piece of my personal puzzle?

As usual, I don’t know the answers to any of these questions. I only know that the blue/grey lenses are working for me. For now, at least.

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