Why I Wrote The Book


, , , , , , , , , , ,

I really hate to write. I am sure that sounds strange coming from a person who has a blog and who wrote a book.

I approach a blank page with many of the same feelings of students facing essay questions. I remember a particular test in my college literature class that required an analysis of My Kinsman, Major Molineux by Nathaniel Hawthorne. While I was looking over the questions, I heard a loud groan from behind me and the thud of a head hitting the desk in despair.

Yes, that would be me facing a blank page and trying to write something meaningful about temporal lobe epilepsy. I would rather be analyzing Hawthorne.

All of us have something that drives us to do the things we do, consciously or otherwise. I wrote the book Surviving Wonderland, Living with Temporal Lobe Epilepsy and I attempt to make blog entries because I am always aware of the feelings of aloneness, helplessness and confusion that I experienced when I was first diagnosed.

At the time, I was working as an editor of healthcare manuals. I had a background rich in medical research. Not the kind of research with test tubes, but the kind that describes and links diseases, conditions, symptoms and outcomes. I was an expert on how this information formed the basis for healthcare funding in this country, and I even spoke at conferences, training others on precise classification and collection methods.

Understanding how things fit together in this world of disease was interesting to me until I was the one diagnosed with a disease. Then the research changed from being interesting to being essential.

In those first few years, I found a lot of confusing information on the Web, with very little of it reliable. I felt isolated and frightened a great deal of the time. I also felt tremendous shame as if this disease were some sort of punishment for being a bad person. Karma in spades.

I knew no one else with TLE and often had trouble communicating with my medical doctors. My therapist was the only person that helped me find a sense of equilibrium. Late, my husband and family would take on a huge part of that effort; but in the beginning, when none of us knew what was happening, my therapist offered sensible advice.

“Write a book,” was one of her suggestions. Both my husband and my neurologist echoed this concept at the time. The act of writing was supposed to help me work out my issues while providing a first-hand account of TLE for others to use in looking at their own experiences and challenges.

This seemed to be a doable thing since I was married to a writer and editor. I rationalized that whatever I wrote that was awful, he could perform some sort of magic over it and it would be fixed.

Well, at this point, I should say that writing the book sucked and that I am lucky my husband is still married to me. There were times when I cried at having to relive something that I wanted to share, but also wanted desperately to forget. There were times when my writing was so convoluted that my husband couldn’t fix it and I had to start over. There was many times when he had to work with me on how to say something simply to highlight the information.

The book was finished about the time I had to start getting off the anticonvulsants. My body was rejecting the medication and developing an autoimmune condition in the process. I forgot about the book. There were just too many other things to go through, like drug withdrawals.

When the dust cleared, I started looking for an agent. That’s the last I will say about that process. Luckily for me e-publishing exists and that my husband, who is still speaking to me, was willing to go through the tedious process of conversion, contracts and final edits.

The book exists as Surviving Wonderland, Living with Temporal Lobe Epilepsy . This morning it was #1 on Amazon’s Kindle list for Temporal Lobe Epilepsy. I hope this means that others with TLE at looking at it and realizing, as I finally did, that none of us is really ever alone.

Thanks again to my husband, who has given more to me than any person should be expected to give.

The Museum


, , , , , , , , , , , , , , , , ,

January 23, 2014

Every time I sit at the computer to write about something relating to Temporal Lobe Epilepsy, I wage a small war with myself. I don’t write because I enjoy it. I don’t write because I think I am good at it or because I like the idea of someone reading about my experiences. Quite simply, I know what it is to feel very alone in this illness, and something about that experience compels me to write about it in a place where others who may be suffering in much the same way can discover it. I know from my own search that sometimes the smallest piece of information, something that seems ordinary or even a little odd, can fit a piece of the puzzle into place.

My experiences at the museum seem to be hanging in my mind like pieces of a puzzle which have yet to drop into place.

Our family decided to take a trip into Houston to visit the Museum of Natural History during the Monday holiday. Our group included my husband, older daughter, son-in-law and their children, aged 4 and 2. We went in their van, driving on very busy highways. I sat in the front of the van to avoid as much of the problems with movement and merging as possible, but anyone who drives through Houston realizes there’s always a whole lot of merging going on.

Lately, I had been having a lot of problems while in a car, both as a driver and as a passenger. I know that the movement from outside the car sometimes causes me to go into a seizure cycle. I won’t have a seizure at that moment, but the experience is like adding water to a glass: add enough water to the glass during the day and boom, the seizure will, well, seize me when my body relaxes at night in the process of going to sleep.

There have been other times when I had major problems in the car. Others kept telling me it was an “emotional” thing. I was made to feel childish, broken or incompetent because of my inability (and then reluctance) to drive. I stopped driving around the time that I was 19, and did not resume until I was around 28. It never occurred to me that the size of the car, the streets I went down or the condition of my brain at the time had anything to do with it. I had been branded “hysterical” and the driving was just another symptom.

Only recently did I start to look at the possibility that the driving issues were due to photosensitivity that includes problems with patterns. I recently read a few articles that describe these types of triggers. It is good to find these articles, and to actually know what to look for to understand this type of symptom. My neurologist told me that I was photosensitive as a result of an offhand comment. No conversation about patterns, lights, triggers, etc. Gee. Anyway, I had problems on the way to the museum and not because I am hysterical.

When we arrived at the parking garage, I realized I was off-center. I was angry and didn’t want to be touched. I took a few deep breaths and I told myself everything would be all right.

The museum is huge with lots of dinosaur bones, gem samples and special exhibits. The main hall was filled with people of all ages, all of them talking, it seems. Here is where I began to get a little worried.

Let me try to explain.

Everyone has levels of filters that allow them to move through their day. They hear the radio at work at one level while talking to a co-worker on another. Everyone has had the experience of studying, watching tv and talking on the phone at the same time. People just get used to sorting and sifting sounds. So I was stunned when I realized my ability to do that has gone away.

All the noise in the lobby seemed to be at the same level. I heard the Japanese family standing at the mechanical Tyrannosaurs at the same level that I heard my husband right next to me. The sounds of hundreds of shoes on the stone floor, of children laughing and adults talking overwhelmed me.

My heart started pounding. I became extremely distracted. I fought the urge to run. I kept telling myself that something was wrong with my senses and that I needed to tamp down the fear factor and figure out what I could tolerate.

I found I just couldn’t tolerate people walking close to me or brushing my clothing; the hair on the back of my neck stood up where this happened. I couldn’t tolerate looking up through the skylight because that caused the room to spin as if I were drunk or lifting off the ground. I couldn’t bear any kind of sound.

The Carl Faberge exhibit was fairly empty and quiet. The blessed quiet along with the beauty of the pieces gave me the opportunity to take some deep yoga breaths, sit on a bench and try to determine what triggered inside my brain that caused this reaction. Lots of traffic, but no “bad” lights, the fluorescent lights that guarantee seizure and pain.

I thought of Alice and how it seemed as if I had drunk from a bottle labeled LSD. I remembered what it had been like on Topamax, something I recall frequently. Before the drug almost killed me, it had provided the filter that made me feel completely separate from the rest of the world and perfectly safe.

Just like most people walking around. Only they take it for granted.

GARD (Glutamate/Aspartate Restricted Diet)


, , , , , , , , , , , , , , , , , , ,

Today I want to share information about GARD that has been growing in popularity with epilepsy patients for several years.

GARD stands for Glutamate/Aspartate Restricted Diet. It was developed by John B. Symes, a licensed veterinarian of 30 years and a sufferer of Celiac Disease.

My experience with this diet has been rather life changing. I was at a point in my struggles with my body that I had almost given up on the idea of eating anything that would not cause intense pain, as well as other symptoms.

I went to a GI doctor to try to find out the cause of this problem. During the years I went to her, she never tested me for Celiac Disease. She merely told me I had problem with nerves, and should eat all the foods that hurt me because I was “babying my system” too much.

She even suggested a narcotic for the pain. Am I the only one that thinks this was probably a stellar example of a poor medical diagnosis?

I limped along, randomly continuing to cut things out of my diet to get relief. Then I read somewhere that a large percentage of people with epilepsy also have Celiac Disease and that researchers are trying to figure out the link. That was enough for me to go on.

I did not bother going to another GI doctor, because I was still angry from the previous experience, and because my primary care doctor did not feel a GI would understand and help me tie the issues to my current condition

With the approval of my PC, I began to systematically cut gluten out of my diet. I got a measure of relief, but soon realized it was not enough.

In the US, there doesn’t seem to be any nutritionists that you can consult on how to configure a diet for your conditions, unless you have diabetes. I looked and looked, thinking that in Houston I would find someone who wasn’t centered on diabetes or weight loss regimes. Even my PC told me such a profession did not really exist in this country.

I started to read all sorts of information on diets and theory. One good book was The Virgin Diet by J.J. Virgin, CNS,CHFS. I found her approach to eliminating problem foods based on potential allergies tremendously helpful. I was still thinking that my issues with gut problems were separate from the seizures.

Then, in my reading about alternative treatments for those of us with drug resistant TLE, I saw GARD listed alongside the Modified Atkins. I tried the Atkins at one point, as well as coconut oil and many other popular treatments, with no success. I knew these approaches worked for others and felt a lot of disappointment when they failed to help me.

It is for this reason that it took me awhile to look at GARD. When I did, I was really surprised to find that I was on the edge of doing a lot of the things he recommends. The benefit was that now I understood why some of these things made such a difference.

The diet is described in 20 numbered sections written for a non-medically oriented person to understand. Each section gives important information and if you are at all interested in trying this you should read each one carefully to get a real picture of the “why” as much as the “how” of it.

The diet eliminates the following:
• Gluten, which comes from wheat, barley and rye
• Casin, which comes from cow’s milk products (but is mostly absent in goat’s milk)
• Soy, which is in nearly everything from chocolate to tuna, and soy’s cousins peanuts and legumes
• Corn, which includes corn syrup
• Aspartame and MSG

Elimination of these foods serves multiple purposes, but it is the one linked to epilepsy that interests me the most.

Dr. Symes maintains glutamic acid (wheat gluten is 25 percent glutamic acid, casin is 20 percent, soy is more than wheat or casin, and corn is less) and aspartic acid (aspartate) can lead to overstimulation of neurons in the form or seizures. He claims it can also reduce pain threshold, sleep disorders and emotional disturbances or neuronal death such as ALS (Lou Gehrig’s Disease).

Dr. Symes states that because the diet is one of elimination of common foods, it is “simple” but not “easy”.

Uh, he has that one right.

I have learned a lot since I started dealing with this issue. For instance, did you know a can of lightly salted mixed nuts contains both milk products as well as wheat? Or that a can of tuna normally contains soy (my husband pointed this out), as does almost any chocolate product at the grocery store.

If you embark on this diet you can expect to learn to live with simple, unprocessed foods and a lot of protein. But here’s the thing: it has reduced some of my seizures and raised the seizure threshold. It also has reduced my chronic pain in damaged nerves, and it certainly has worked toward healing my gut. I feel so much better.

And because of that feeling of increased health, I know I will never be tempted to return to old eating habits again.

In Answer


, , , , , , , , , , , , ,

Several people have contacted me about options for dealing with fluorescent lights. I am trying these out now. Here are the two Web sites that carry glasses that are supposed to provide a measure of protection.

The first one, TheraSpecs specializes in glasses that protect the wearer from the sun and other forms of light, including fluorescent and computer screens. They are aimed at people with migraines. I think all of us with TLE have migraines, but the concept that the migraines are related to seizures made me think these glasses might help. I will report on their success.

The second Web site features Zeiss Z1 F133 protective lenses. It’s a filtering lens, made by Zeiss in Germany that’s supposed to block 80 percent of light. (F133 is the particular shade of blue found to be most effective for photosensitive patients in clinical trials, according to Zeiss).

These lenses are supposed to prevent seizures. They are expensive. And, they are not easy to get. You can’t just go to the Zeis Web site and order them. Here’s a link to a blog (http://videogameseizures.wordpress.com/2012/03/11/life-with-zeiss-z1-f133-protective-lenses) that has specific instructions about who to contact. It also has responses from others using them. And yes, I plan to get these, too. This blog, by the way, also has very good information about seizures related to video games.

Finally, I discovered an unexpected benefit to the Botox injections I get for my migraines. It appears as if they give me more time under fluorescents. For the last couple of years I had decreased the number of times I went in for injections because of the out-of-pocket costs (We just found out that our insurance carrier will cover them for migraines if my doctor provides the necessary documentation!).

While many aspects of my seizures have improved lately because of my GARD diet and yoga, the photosensitivity has gotten worse. After the injections the other day, I noticed I felt better. My bones still turn to mush and I still feel out of control, but it took longer, giving me time to escape. A few minutes is vital when you have to run into the clinic for a flu shot. There is absolutely no information that I could find proving this, it is simply my personal experience.

What the Lights are Teaching Me


, , , , , , , , ,

I sat at the computer and read, “fluorescent lighting is unlikely to present a hazard to photosensitive patients.” This statement was made in the study Fluorescent lighting and epilepsy (www.ncbi.nlm.nih.gov/pubmed/499117). I was having a hard time not feeling anger over the words. What good would that do anyway? I wasn’t face-to-face with the authors and chances were really high none of them has epilepsy, much less the kind triggered by light.

I have this type epilepsy. Heat, hunger, fatigue, anger, medication, and whole groups of other situations can trigger my temporal lobe, but light triggers the worst for me.

Fluorescent light is my evil nemesis. When I go into a room, a store or an office with fluorescent lights, I have about 15 minutes before I am in trouble. I have these glasses my husband found for me that are supposed to help, but they only give me a few more minutes at best.

Here is what happens.

First, I begin to feel weak. I may even stumble or sway if I am walking.

Next, I start to have that “bad feeling” that everything is wrong, and I am desperate to fix the problem. Simply walking out would help, but by now I have convinced myself that I can continue what I’m doing and not have a seizure. (At this point you might think I am not making sense. Well, that is the point, because logical thinking is one of the first things to go.)

As my logical thinking goes downhill, my muscles stiffen. My legs don’t want to bend right. Walking is difficult. My arms hurt. My head hurts. My gut begins to twist. My bone marrow feels like it is melting. I feel a burning pain throughout nervous system. Eventually, I have a Complex Seizure if I don’t take my rescue medication.

Sometimes the seizures come too fast to avoid. Not too long ago, I begged my husband to let me go into Hobby Lobby for “just 15 minutes”. I reasoned that I needed art supplies and wrapping paper that he just was not able to pick out for me.

I was hit before I made it half way to the art supplies. I felt myself swirling. I was aware of others around me, but I couldn’t seem to connect with them. I felt like I was in a glass bubble. My husband walked up and, seeing my distress, said something to me. I turned in the opposite direction and ran from him. He, being the good person that he is most of the time, ran after me, knowing exactly what was happening.

Quite a few people have blogged about similar experiences, even if the scientific community is slow to acknowledge the fluorescent effects. Up until yesterday, I thought I understood what the lights did to me. That’s when I had to go to the doctor. I was at the office for almost two hours, under unrelenting fluorescents. I left at the bone marrow-melting phase and went right home and took the rescue medication.

I felt upset and ashamed of my behavior at the office. These feelings are not new, but this time, thanks to the medication, I was calm enough to look back and try to piece things together. It was then that I realized I became emotional, aggressive and angry about the time that my logic began to fail and I started to stagger.

For me, this revelation was huge. It made perfect sense to me that as the lights began to trigger the seizure function in my brain, given where the epilepsy is located, it would impact my emotional stability.

I wondered if this sense of shame and regret that comes after light exposure is from the effect on my emotions, much like the disruption of my motor abilities.

Knowing that my logical self will be replaced by an angry and emotional one after a given period of exposure gives me some odd sense of control. At least I can warn people around me, and afterwards, allow myself some compassion.

About three percent of us with epilepsy are photosensitive, or have seizures triggered by light. It seems like a small percentage now, but that number could grow if more effort is not made to protect the public from entertainment that is too much to handle, even for a normal brain.

Both Japan and England have reported huge surges in first-time emergency room visits resulting from seizures triggered by graphic-heavy television commercials and video games. Medical emergencies related to seizures may spike unless the entertainment industry and the makers of fluorescent lights figure out what they’re doing to us, and maybe to the “normals.”

Brains are more fragile than you think.

The Thorn


, , , , , , , , , , , , , , , ,

I just passed a birthday. It was my 59th, to be exact. I did not celebrate it because I was too busy mourning the thorn in my side. I am writing this because now I see how wrong I was to feel that way.

The thorn I am referring to is Temporal Lobe Epilepsy. But you knew that since you are reading a blog dedicated to TLE. I was spending the day mourning all the things that I would no longer experience because of the condition, instead of celebrating being alive.

I mourned no longer being able to walk into any restaurant, order a latte and a piece of chocolate cake, and sit quietly enjoying the experience. If the gluten, soy and dairy didn’t get me (I now have celiac disease secondary to the epilepsy), the always-present fluorescent lights would begin to create a painful hum in my nerves that makes me feel like my bone marrow is melting. And that always leads to a seizure. Fluorescent lighting is called a trigger.

I would never be able to leave the house wearing an evening dress, feeling excited and looking forward to listening to live music and having a cocktail or two. Live music is another trigger that can cause simple seizures that result in bazaar hallucinations, head pain and nausea.

I won’t even talk about the lights, or the cocktails, and crowds, which are also triggers. Oysters and straight vodka, once a favorite Sunday brunch, are right out.

At this point, it is unlikely I will ever hold another job, especially one in management. Or get into a car to drive to the job. Or to host a Christmas party, or even attend one for more than a few minutes.

The list goes on.

So I felt sorry for myself with all the things that I will never experience again. But why do I feel that way now? Well, it’s because the yoga, the strict diet, the enforced quiet, the constant monitoring and the small things I work through each day to get one more hour of health or one more night of uninterrupted sleep, are working. They provide enough benefit that I no longer focus entirely on my pain and the difficulties of daily living. I am starting to wake up.

This is what I should have been celebrating. Waking up.

Waking up to a family who has not only been through all this with me, but is still here, full of love and support.

Waking up to a husband who still sees me as an intelligent person worth spending time with each day.

Waking up to creativity, finally.

I realize now that I did not lose anything of true value. And in thinking about all of this, I cannot help think about St. Paul and the thorn in his side.

Paul writes openly in 2 Corinthians and Galatians of an illness, or as he puts it, a thorn. He writes about how he asks God to take away this ailment that was a trial to himself and to others. But the early Christian community accepted him despite his physical condition. He came to understand that the “thorn” played an important role in his ministry, serving to keep him honest and balanced.

Many people believe that temporal lobe epilepsy was his thorn. They point to the physical descriptions of his conversion and his visions, along with his pain and suffering. Maybe it was and maybe it wasn’t.

It doesn’t matter because I get the point. Epilepsy is also my thorn, but the important thing is how I survive with it rather than give in to it.



, , , , , , ,

I have been reading old things today. Things I wrote describing the ravages of my illness, my crushing loneliness and my pain. Other things too, written by my daughter when she was going through what was the worst period in her life.

While doing this I realized I have forgotten how to write. I have forgotten how to pull the thoughts and feelings from deep within me and draw them on the page to express thoughts of pain, confusion, loneliness and joy.

I wonder if there is something about emotional pain that gives a person the ability to move beyond the average and grasp what is extraordinary and beautiful, even while describing the desolation that crisis brings.

What has changed for us? The changes were almost hard to describe because they were so average. My older daughter graduated from law school, had children and began working in a job she really loved. She moved all that creative energy into the interaction with her family and the people that counted on her at work. She stopped listening to the latest music and going to nightclubs at absurd hours. She stopped reaching for all the creative expressions of others and channeled her own into making her life good.

Where did my creative expression go? Hell, I don’t know. I guess it went to sleep. It went to sleep while I was doing yoga to quiet the pain in my body. It went to sleep while I was researching herbal remedies. It went to sleep when I was checking on my mother’s daily schedule. It went to sleep when I was taking care of my grandchildren or talking with my husband over a glass of wine about his day. It went to sleep when I was seeing visions and thinking about their beauty and mystery instead of writing about fear and problems.

I guess it went to sleep when I encountered a feeling that I had missed for a long time: happiness.

It bothers me that the creativity I had once counted on seems to be sleeping. What would I sacrifice to wake it up? Not the quiet happiness that I have found. Perhaps it was a phase in my life that has ended. If so I look forward to what will come to replace it.

I look at my daughter and see her life brimming with gifts and know that whatever went to sleep in her was replaced by something much dearer.



, , , , , , , , , , , , ,

I recently found a temporal lobe epilepsy site from the UK that listed flashbacks as a symptom. This surprised me at first because I have seen a big increase in online TLE information over the last eight years since my diagnosis. There are all sorts of studies and papers about drugs, risks and possible causes for those willing to look. But flashbacks was a new one for me. Well, maybe not new in terms of experience, but new in the descriptive listings. 

Flashbacks are something I am just now, at this late date, beginning to grasp and attempt to understand. No one ever explained flashbacks to me, much less told me that I might be having them. As a result, I grew up with flashbacks that I mentally described as intense memories, as opposed to regular memories. 

I experience regular memories by seeing them and feeling them through the filter of time. I also can’t control them. 

Flashbacks are entirely different. They are like memories on steroids. They come unbidden and take over. They take me back to the original experiences and make me relive them in real time. They affect me physically, mentally, and emotionally. If the flashback is of something traumatic, I get the same adrenaline rush, the fear, the panic, the sadness. If it is of something I loved, I feel that love or the intense sadness if it’s associated with someone who has died. 

I had a rather mild flashback the other day. It was in the morning. I was doing my usual household chores, gingerly because of a migraine. At least I thought I had a migraine as a result of the antibiotics I was taking for an upper respiratory infection. The TV was on as I made the bed, and an old show from the late ‘80s came on. 

I remembered the town and the house where we lived at the time of the show. Then the memories intensified. Emotions flooded in. My current home looked different, as if I were seeing it through a distorted lens. I actually felt that if I opened my front door, I would see a small town in Louisiana and not the Houston suburb where I now live.

Memories that were small, obscure and unimportant rushed back. All these feelings and sensations added up to more than a TV show triggering a momentary thought. The impressions continued until my head pain intensified and erased the feelings. I realized then that I had been caught up in a TLE cycle.

I would have loved to have understood all of this a lot earlier in my life before I let it have a destructive impact on me and on those I love. Flashbacks sound interesting and not very dangerous, but they can tear your life apart if they come back at times of weakness and pain. 

I hope the medical community in the United States will start looking closely at this. Until then, I also hope people experiencing these kinds of flashbacks will work to understand their power and not let them destroy the present or their lives.

Reference: www.epilepsy.org.uk/info/seizures/focal-partial



, , , , , , , , , , , , , , , , , , , , , , , ,

Each of us has an intense longing for others to accept us for who we are, regardless of our health, appearance, talent, education, race, or religion.  That longing, or need, drives much of the daily lives of everyone we know.  The need for acceptance for those of us with temporal lobe epilepsy is a real and almost tangible goal, no less in authenticity or intensity than the goals of others.

And yet, it is not like theirs. Some people look at us and see only the face of the condition. It defines us, and our true identities fade behind that label. On the opposite end of these people are those who either openly doubt the existence of our TLE, or skillfully discount its effect on our daily lives, which requires us to take a defensive position on a regular basis.

The first group robs us of our individuality, while the second turns us into needy liars.

The worst thing about these people is that they move about within our personal boundaries. They are our friends and family, our co-workers, or fellow church attendees. They could be our parents, our children, our friends.

My TLE diagnosis came in 2005 when there was very little information about the condition on the Internet or in readily available medical books. My health information degree required extensive classes in all sorts of conditions, including neurological ones such as Parkinson’s disease, but I had never heard of temporal lobe epilepsy until the day of my diagnosis.

Several of my neurologists were not familiar with its symptoms and were not prepared for the way the condition presented. They tried to treat me as if I had Bipolar Disorder or Schizophrenia, despite the fact that the drugs used to treat those conditions just made my condition worse.

My co-workers did not know what to think.  My friends were just about as confused.

So, why should I complain of not being understood if the condition only recently has been brought into the spotlight and is still relatively unknown? Here’s why. This blog seems to be the only outlet I have, other than complaining to my husband, who, by the way, works hard to get TLE information into the public awareness.  In the past, I have tried to write something uplifting or informational on this site, but after months of being sick and seeing what comes from online sites that seem only to push drugs instead of awareness and information, I am now just pissed.

So, in exercising my freedom to express myself in my blog, I will say here and now that I struggle daily not to let the epilepsy rob me of my identity.  I manage my condition through my lifestyle and the avoidance of triggers, because I am unable to take the medication that is supposed to control seizures and reduce pain.

Oh, they work for a few days, maybe even a few months, then they go bad without warning, causing suicidal impulses or intense pain, advanced muscular weakness, or skin discoloration.  The horrible thing about being drug intolerant is that I have experienced relief from my seizures and my pain just before the drugs go bad, reminding me of what it’s like to be “normal.”

Each day, I management my condition by myself, which is something akin to walking a tightrope.  It seems hard not take the wrong step and fall off.  And it becomes so much a part of my life that it also is difficult to have to hide it from others as a price for social interaction.

Here is what I am hiding, and I am willing to bet there are many others out there hiding the same things.  I have Dante-like visions that give me horrible headaches and make me sick to my stomach. I have no doubt that these visions are related directly to TLE.  I say they are visions because I am awake when they come, and there is nothing “dream like” about them.  It is “the other”, whatever that is.  Many times they are frightening and leave me with a sense of foreboding or downright fear.

I have problems with electronics, all kinds of lights from natural sunlight to fluorescent, loud noises, and crowds of people.  I have frequent migraines, horrible stomach aches, confusion, depression, and irritation at others.  And, finally, I have unrelenting, daily nerve pain throughout my body, making activities often difficult.

Those of you who have pain or live with someone in constant pain, know that it can take over your life to the point that everything you do or even think about is centered on your level of pain at that moment.

With all of these issues, I may be unreasonable in my expectations that others accept me for who I am and not for my condition.  But, I still have hope that one day it will happen.  In my perfect world, I would like to deal openly with my condition and not hide its effects or let them consume me.  There is the thought that if I could simply be what I am to those I know, I could handle everything else better.  Perhaps this is a naïve belief or hope, but someday, whether it is through public awareness or personal triumph, I hope that level of openness and acceptance becomes available to me.

If you are reading this blog, you probably have TLE or are living with someone who has it.  I hope that you are able to gain acceptance in your life.



, , , , , , , , , , , , , , , , , , , , ,

An email came in as I was writing a blog entry on research on whether music and the spoken word help with pain relief.

The email contained a link to an article on King Tut in New Scientist. The article apparently was the same, or similar, to one carried by a lot of news outlets around the world, such as Time, Huffington Post, Egypt News, and India TV News. Seems a British surgeon believes King Tut inherited TLE from his biological father, Akhenaten, the pharaoh who believed in one god and paid the price for his revolutionary idea.

OK, we know that many people in the ancient world were documented as having partial seizures and possibly TLE, like Julius Caesar and Alexander. Epilepsy was viewed differently then. And, we know that if someone had an unusual experience or encounter with God, such as St. Paul or Moses, people tend to write off the experiences as hallucinations and visions resulting from TLE. University of California researchers even claimed to have found the God Spot in the brain.

As far as I am concerned, people can decide for themselves what they believe is possible. For the record, I don’t believe every encounter with God is the result of TLE, and I don’t believe TLE prevents those of us with the condition from having valid religious experiences.

The reference to TLE causing the religious revolution of Akhenaten is not what concerns me, but rather the way the media played it up: “Did King Tut Die of a Disease that Gave Him Breasts?”  Well, that’s pretty easy to figure out. The idea of breasts on men is more titillating (so to speak) than some ancient dead king believing in one god. It’s also wrong, degrading, and an insult to all of us with TLE. I almost threw up at the incredibly horrible assumption that was being put together by this so-called British surgeon.

But, the media were just playing along with the public-relations scheme by New Scientist to drive readers to their site. Oh, did I forget to mention that New Scientist is the same publication that reported in 2010 that researchers were convinced King Tut died of sickle-cell anemia?

To its credit New Scientist quoted Dr. Orrin Devinsky, probably the most respected neurologist dealing with epilepsy in the United States, and the director of New York University’s Comprehensive Epilepsy Center.  Toward the end of the story, for those who managed to slog that far, Devinsky said, “the exact timing of Akhenaten’s religious conviction is not so clearly documented, and most cases of sudden religious conversion are not due to epilepsy.”

He went on to say that “Monotheism could be related to epilepsy, or bipolar disorder, or schizophrenia, or drug intoxication from a fungus – but this paper does not sway me to any of these options.” He didn’t address the ‘breast issue”. Maybe he wasn’t asked, or maybe he didn’t want to dignify the absurdity with a response.

This last thing seems to fit with another statement Dr. Devinsky gave The New York Times in an article about Temporal Lobe Epilepsy and Easing the Seizures:

“There is an ongoing, significant embarrassment level about it. The feeling, for a lot of people, is that it does carry a lot worse stigma than a cancer, or an H.I.V. even. At some level, it’s society that needs to wake up and realize it’s just another neurologic disorder.”

New Scientist www.newscientist.com/article/mg21528812.400-tutankhamuns-death-and-the-birth-of-monotheism.html

Huffington Post www.huffingtonpost.com/2012/09/12/king-tuts-death-new-theory_n_1877713.html

Egypt News www.egyptnews.net/index.php?sid/209148701/scat/d7006824400aaac1

India TV News http://www.indiatvnews.com/news/world/did-king-tut-die-of-disease-that-gave-him-breasts-8857.html

Time http://newsfeed.time.com/2012/09/13/did-king-tutankhamen-die-from-epilepsy

The Independent www.independent.co.uk/news/science/belief-and-the-brains-god-spot-1641022.html

New Science sickle-cell www.newscientist.com/article/dn19094-tutankhamen-killed-by-sicklecell-disease.html

Orrin Devinksy, M.D. http://epilepsy.med.nyu.edu/orrin-devinsky-md

The New York Times www.nytimes.com/ref/health/healthguide/esn-epilepsy-ess.html

Epilepsy Therapy Project http://www.epilepsy.com/epilepsy/famous_leaders

NCBI http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1032067/

NYU http://epilepsy.med.nyu.edu/


Get every new post delivered to your Inbox.