Writer’s Block

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I occasionally arrive at a point where I reach for a concept and draw a blank instead. I have been feeling that way for a while. Perhaps I am tired or struggling with mild depression or simply feeling uncreative and unable to express myself.  Whatever the case, it includes my thoughts about TLE.

That said, I decided that someone else could express my feeling better today. Maybe not in the future but today, definitely.

Before I add the link to this truly great TED Talk, I want to explain something that I feel is fundamental: I don’t want to use the space I have to express extreme anger or disgust. We all have it and we all know the source of our own anger, whether it’s the relative who just doesn’t believe it or in believing doesn’t get it; the doctor that doesn’t listen or actively harms us; the strangers that in knowing, chip away at our dignity or self-esteem.

Like I said, we all have anger and we all know its source. Social media is full of this anger and the reasons for it. And while this is providing a service on some level, I chose to believe that what I have to say to the people that read this, and to whom I am grateful for giving me a voice, need to be somewhat positive. Without the will to find positive outlooks to my issues, I would not have made it to a healthier place. If I had believed all the negative things doctors or well-meaning laymen told me, I might not have had the courage to make my own decisions, I might not have survived.

Sitawa Wafula expresses some of these thoughts in an elegant and insightful way. So, for today she is my voice, my thoughts and some of my experiences. I hope you find a connection as well.

Safari

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I have never been on safari. I have read a lot of books on what ‘going on safari’ is like. I have seen movies, too. I imagine that these are poor substitutes for the actual experience. Kind of like “reading” about the impact of TLE is not exactly like “living” through it. I still imagine sometimes what it would be like to actually go on a safari, riding in a Jeep or Scout and armed with the best cameras I  could afford. And when I think about the excitement and beauty of it I also laugh at myself for not really factoring in all the effort and discomfort.

The amazing painting below is by John and Suzy Seerey-Lester. It shows all too well some of the pitfalls of a trip like that. Danger hiding just outside the door. But we all know how that feels. That impending feeling that danger of some sort associated with TLE is right outside the door.

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Last weekend I had a lot of time to think about that danger. I was flying from one part of the South to another, coming home from a trip to see family. The trip was expected to take most of the day with me changing planes in Dallas. I was confident that things would be OK even though I was flying alone, because I had added time into my schedule in case of weather delays. I was sure I would make it through the trip and not have any cause for panic.

Panic in an airport was an entirely new feeling for me when I first started dealing with TLE. As early as 6 years of age, I was flying alone between parents. When my sister, three years my junior, began to fly with me, it was no big deal. I simply took her by the hand and set off. If I got lost, I would look for someone in a uniform, such as a stewardess or priest. This was during the 60s. I was safe and had remarkable freedom and no trouble at all, even when required to change planes. And I so loved the beauty I saw out the window of the plane. It calmed and awed me.

In my last two jobs, I flew often and dealt with all kinds of problems and reversals associated with the frequent flyer. I always felt confident and calm, having no fear that things would be sorted out as quickly as possible.  I was on the last plane to land in Houston as Tropical Storm Allison hit the city hard. The plane tried the approach to the only runway open three times before the winds and rain allowed a moderately safe landing. Still no panic on my part.

After 9/11 (and I was scheduled to fly across country on that day) I got used to all the extra twists and turns with air travel. I calmly exited Las Vegas airport during a bomb threat and once entered a deserted Banger, Maine, terminal during sub-zero temperatures without a clue as to how I would get to a hotel. I flew without fear, and a problem solved during the journey was a gift. This ability evaporated with the onset of TLE and light sensitivity.

After I began to struggle with TLE, I became more and more light sensitive. No one really understands what or how this began, or even where in my brain the problem exists, only that it causes extreme nerve pain and seizures. The seizures from this are simple seizures. I am conscious during them, but they alter my thinking. Quite a bit. I start to feel threatened, paranoid, confused and panicky. I cross boundaries, too. When I am fine, I would never think of butting to the front of a line and grabbing the arm of an attendant, but I have actually done that after a few hours under the lights.

To be honest, I don’t trust myself after a prolonged exposure. But there is no safe place to go in an airport to avoid the lights. And there are so many people, so much noise. I imagine the danger, like the picture above, so close and so intense.

The last weekend when I was traveling, I ran into extreme delays due to weather. I sat in very crowded gates, feeling myself react under the glare of the fluorescent lights and the sound of all those people waiting for their delayed planes along with me. As I sat sandwiched between some very large travelers, I felt the nerve crawl up the right side of my face and the tingling all over signaling the beginning of a major problem. Sit still, I told myself, and you will live through this.

Travel for me must be a bit like I imagine a safari. You must carry your own food, deal with being desperately uncomfortable, learn to avoid stampeding mammals and crowded watering holes, and above all else be aware the threat of danger that is ever present. But like the safari in my mind, the run-of-the-mill air travel can display moments of breathtaking beauty and awe.

I doubt if things will ever be easy again when it comes to travel. The key for me is control and achieving a panic-free experience. The danger is always lurking, but if you are quiet and careful, it might not get you that day.

Pandora’s Box

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I love reading the Greeks myths and thinking about how they relate to things in the present day. One of my favorites is the story of Pandora and her Box, believed to have been written in the 7th century BC. While rereading it the other day, I realized again the Greeks were on target with their explanations of life. The Pandora story has been analyzed and given many meanings, but I will add yet another for those of us with TLE.

Pandora, according to some of the oldest myths, was the first woman. She was made by Hephaestus at the request of his father Zeus, king of all the Gods. Hephaestus was the god of metal, fire, artisans, and craftsmen. He crafted all sorts of wonderful things for the gods—beautiful and powerful things—but Pandora was a different sort of creation. She was made to be a punishment to man for Prometheus’s gift of fire to mankind. Hephaestus endowed her with all sorts of talents, intellect, and beauty and when she was complete, Zeus gave her a box.

Actually it was a jar, and we can blame the box reference to a botched interpretation in the 16th century, but for purposes of clarity we will call it a box. All sorts of the world’s evils were in that box: death, disease, famine, and so forth. It also contained Hope.

Up to that time, the newly made mankind had not experienced anything but paradise. Then Zeus put a ticking time bomb into the world, a woman who has been imbued with an intelligent curiosity and a closed box containing the seeds of all bad things. How long would it take for her to open it and change life?

At this point you probably have a good idea of what the ancient Greeks thought of Zeus. And frankly, there are some elements similar to the Christian and Jewish version of the Garden of Eden. But we will move on.

For me, the story is a little confusing as it appears that since she is the first woman, all these newly minted men had been running around enjoying life to the fullest. Here the story of How and Why is less important than What.

So here we are with Pandora and her box. As intended by Zeus, she finally succumbs to curiosity and opens the box, letting all the evils of the world fly out and take over. As these evils leave the box, she attempts to stop it and slams down the lid, trapping the only good thing that it contained: Hope.

It is this action that fascinates me and provides an interesting metaphor to living with TLE. As human beings, we are all created with gifts we can use either for good or evil. We all have curiosity and intelligence (OK, I know what you are thinking, but this is not a political blog, so stop it). And we all have our box, the issues that surround TLE.  We can’t really ignore the TLE issues as that would not be human. When we open our box, we run the risk of releasing only the very worst.

For me, opening the box looked like this: I decided to use my intelligence to understand my condition. In doing so, I learned how devastating this condition is to each individual who has it; I learned all the personal pain others have experienced; I learned of all the negative outcomes to treatment; I learned of all the stigma that surrounds it, not only in my life, but for all who deal with TLE; I learned of the lack of interest many neurologists have in dealing with its special issues; I learned of the lack of funding for research when compared to other diseases and conditions; I learned of the government’s criminal disregard of safe treatment, and on and on.

Stigma, Pain, Loss, and Shame to name a few evils flew out of my box, and in the beginning I, too, slammed down the lid on Hope. I see how wrong I was to lose hope under the burden of all that needs to be addressed.

But here is where I move from ancient Greece to 19th century Russia. Tolstoy in observing the overwhelming evils of poverty in the world asked the question “What then must we do?”

In examining the causes of poverty through the ages, Tolstoy developed a vision of a way of life that would deny the possibility of the exploitation of one person by another: a vision of self-discipline and responsibility, of joy, passion, and compassion, in which work for its own sake plays an essential part as a means to a healthy and kindly life.

So where does that leave me, with the Eve of the Greeks, Tolstoy’s visions on the cure for poverty, and my sadness and frustration surrounding the issues with TLE? I believe that like Pandora, we will and should open the box. In doing so, however, we need to be very careful not to shut in Hope. And that like Tolstoy, we need to deal with the evils that have escaped our box through a vision of self-discipline, joy and compassion, understanding the whole, but dealing with what is actually in front of us at the moment.

I am never going to have the power to change a major issue with TLE. I worried that a blog entry about Hope would be meaningless to most in the face of all that needs to be said. But despite all of this, in the beginning of this new year, I would encourage a sense of Hope over all other issues. Hope opens our mind to the possibilities that have yet to be explored. Maybe someday that sense of Hope will power something so great for us that all our lives will be changed in the process.

Who knows what was intended, but maybe Zeus put the cure to the evils in the bottom of the box. Till then, don’t slam the lid on it.

To educate or not to educate

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I went to a massage therapist the other day to deal with a painful back. For me, it seems, when I have a seizure in my sleep, I freeze in painful positions and later have knots within my muscles that need to be worked out by more than yoga twists.

That said, it was a last minute decision and I had to find someone within my driving distance. The amazing therapist that I usually use, but who is often booked and well out of my driving range, requires a great deal of planning from both of us.

The therapist I was assigned to that day was a former nurse who chose to move into the alternative medicine arena.  I assumed she would be open and knowledgeable about alternative treatments. When we got started, I was disappointed in her point of view about the body in general and, in particular, her attitude about alternative treatments. But it was during the session that she said something that nearly had me get up from the table and walk out.

We were discussing the chemicals that caused muscles to knot. I said that with respect to my condition, I had done some research … and that was as far as I got.

She interrupted me to say I had no business doing research and that I did not know what I was doing. She continued by telling me people needed to stay off the Internet and listen only to their doctors because they could start imagining symptoms and cause everyone problems. They should only read “patient support” sites, she went on to say. The doctor knew everything, she said, adding that I didn’t know what I was doing.

“Well,” I said in a restrained manner, “I have a degree in health information, so I guess I have a degree in ‘I guess I know what I’m doing.’” At that point I was so angry I wasn’t going to discuss my condition or anyone else’s with her. Years of dealing with seizures, bad diagnoses, related autoimmune conditions, and other people’s ignorance have left me a bit touchy.

I left, throwing her card in the trash as I went out to the car. But the conversation started me thinking.

If you have read the About page on this blog, you know I have a degree in Health Information Administration, which requires understanding, researching and codifying health information, disease information and treatment information. Does this degree mean that only people in my previous profession have the right to read information, reports and studies on the Internet, but others don’t? Hell no.

I’m alive because of the degree, because I have experienced some pretty wrong, inappropriate, and dangerous diagnoses over the years and had to overcome them through my own research, which showed me that things have changed in the health care industry with respect to autoimmune diseases and especially with Temporal Lobe Epilepsy.

Anyone who has a condition, disease or concern for a family member should learn how to discover the available information about the actual disease process, treatment, and surrounding issues. The people who survive and can work with or overcome problems and setbacks are those who purposefully educate themselves. In other words, they give a shit about what is happening to them and they don’t hand the responsibility over to someone else, like a neurologist who doesn’t see them for more than a few minutes each six months or so—a neurologist who may not have been trained in epilepsy and doesn’t understand the patient’s particular brand of TLE (been there lots).  Or my personal favorite, a neurologist who is distracted about a failed real estate deal when your life just might be on the line. And yes, that last one happened to me when I went in for an emergency visit because of extreme rage and thoughts of suicide caused by the use of Keppra. That neurologist couldn’t seem to get the fact that if I was having a life-threatening reaction to a drug, I probably shouldn’t be using the drug. If you are in tears wondering if you will survive this next year of your life, you aren’t interested in their problems with their business partner.

So how do you handle stuff like this? You read all you can manage.

Understanding where you are, who you are, and what you are experiencing gives you a voice and a level of self-respect when it comes to the most important treatments in your life. Having a realistic expectation of your care-giver is important as well.  And, an interesting outcome to self-education is that these days the doctors that I go to are much better at helping me because I am choosing them using different criteria and trying to work with them by providing as much detailed information as possible.

When I think about what the nurse/massage therapist said, it still makes me angry, but I know the world is changing and we all have power. And that power starts with the written word. It’s all there for us to unravel, it just takes a little technology and some time.

In the night

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“I wonder if I’ve been changed in the night? Let me think. Was I the same when I got up this morning? I almost think I can remember feeling a little different.” Alice’s Adventures in Wonderland, Lewis Carroll

 

Night is an old and familiar foe, one I have fought since childhood. Whenever I have a good night’s sleep I feel as if I have accomplished something wonderful. TLE has made all the difference between falling gently asleep versus wrestling with an imaginary enemy.

As a child, I had always had some difficulty with pain, usually head pain, and a change in perception during the night. I was often uncomfortable without being able to put my finger on why I couldn’t sleep well. Then, in the early days of my diagnosis I would not only feel things, but I would also see them. Just closing my eyes seemed to set in motion a whole series of physical responses such as restlessness, pain, voices, and what I think of as alphabet soup. It’s not really alphabet soup— it’s swirling, disturbing visions of demons or images of numbers that seem to be in lights. Some nights it was one light, either pink or green, that bore down on me like the headlight of an oncoming train moving behind my closed eyelids. I was terrified in the beginning as this developed, but eventually stopped being affected by the show.  In addition to the fireworks and scary images, there was a feeling of being touched. Invisible hands running up and down an arm or leg, or even moving across my cheek.

Oddly, I remember the tactical experiences from childhood more than anything else. The sensation of touch on my legs made me kick them in the night until I fell asleep, worn out from the constant movement. In college, things escalated due to the stressors I had added to my life. I was now staying up very late with my boyfriend (now my husband) drinking coffee, smoking cigarettes and discussing everything you can imagine. I did not want to give up these late night conversations and at the time had no clue what they were doing to the condition I did not even know I had. When the violent, visual, and tactical hallucinations started, I was at a loss.

All of this night stuff presented a problem. Try telling your doctor that you see the morphing face of Satan and an oncoming train when you close your eyes. So yeah, I kept that whole thing to myself. I cannot even imagine having a doctor not want to refer me to a psychiatrist as many suggested doing. The latest unfortunately was last year when I complained to my GP that I was feeling a lot of fatigue, depression, and no appetite. She immediately suggested I head down the hall to be evaluated by the resident psychiatrist. I resisted, then went home to call a healthcare professional in another state and explained my problem. After some probing of the details, she determined I was unable to process cyanocobalamin, a synthetic form of Vitamin B12. It was in six products I was taking at the time. I stopped taking it and I was fine a few weeks later.

The morphing demons and the oncoming train responded in much the same way when I was treated for seizures. Though I would not be able to continue on the medication very long, it did stop the night stuff. To me this is proof positive that all these things were manufactured by the TLE. They were not residue of childhood fear or emotional instability. They are somehow part of the epilepsy. They are never very far away, and the frequency of their visits depends on how well I am managing my seizures that particular day.I tried to explain to several of my neurologists how medication impacted my experiences and issues, such as hallucinations and perception changes, but I was immediately sorry. One doctor declared I must be schizophrenic (despite the fact that I was rational and far too old a person to be an undiagnosed schizophrenic). At the time, I was going to a good therapist who was helping me deal with the crisis that my TLE had caused. The fact that she knew it was the illness when a neurologist could not understand it just floored me.

The question becomes, as William F. Buckley Jr. used to say, how much you tell your doctor, at what point do you do it, and what should you expect?  I guess all of us needs to be thoughtful about symptoms, observant about what changes them, and aware of how strong or fragile we are feeling.

When my demon alphabet soup and runaway train show up at night, I am no longer frustrated and discouraged by their arrival. Now this event serves as a reminder of how far I have come with the TLE. I only wish the medical field had made as much progress in actually looking at the events in an individual’s life and understanding that not everything that is seemingly bizarre is a product of the mind—it might be a product of the brain.

The Cake marked Eat Me

“Soon her eye fell upon a little glass box lying underneath the table. She opened it and found in it a very small cake, on which the words ‘EAT ME’ were beautifully marked in currants.” -Alice’s Adventures in Wonderland

It has been awhile since I wrote about the GARD diet for Epilepsy. This is probably because it is so much a part of my daily life that I do not think about sharing it with others.  I have a secondary condition of Celiac disease, so when I think of food issues, I do not always think of seizures. But seizures are very much the reason I sought out this diet years ago.

The GARD diet was developed by a veterinarian named John B. Symes.  It stands for Glutamate Aspartate Restricted Diet. This is an elimination diet, requiring the individual to eliminate gluten (and grains) aspartate (found in the artificial sweeter Aspertame), diary, corn (including high fructose corn syrup) and soy from their diet permanently. He also suggests elimination of legumes and nuts. His reasoning behind this approach is very sound and much more informed about the anatomy of the human body than any physician I have talked with over the years.

On the Website, Doctor J, as he calls himself, gives the reader clear, detailed reasons for the elimination of these foods and offers insight into expected improvement. Because his Website is so complete, I see no reason to repeat it, only to offer up my own testimony as to the results of years of application.

When I began to search out information on a diet for epilepsy, I did not know I would be diagnosed with Celiac a short time later. Finding Doctor J’s site turned out to be a gold mine for me. It covered both conditions and it was easy to do, or so I thought. To eliminate gluten, soy, diary and corn completely from my diet turned out to be somewhat like falling down a rabbit hole. I had no idea that I would eventually give up processed food altogether.

Let me give you an example of why.

I want to eat tuna, but to do so I must get canned tuna from one local store because the vast majority of brands have gluten and/or soy added to the tuna, even when packaged in water.   Check your carton of orange juice. In the US, it often has soy added. The vegetable oil you cook with is actually soybean oil. The olive oil you just picked up at the grocery is adulterated with soybean oil unless you buy a brand that states it single sources the olives, which of course costs more.

To avoid the problem ingredients, I special order my chocolate bars, a huge treat. They are made in Peru of cocoa without added dairy and soy. They also are so potent that eating a whole bar is like taking speed.

Yes, the GARD diet can get rather wild, but the results are worth far more than the required effort.

Once I eliminated gluten from my diet, I noticed that the number of my daily seizures declined considerably, and that a particular type of seizure disappeared altogether. This seizure often occurred when I was trying to fall asleep. I would wake up, feel nausea and see a swirling of colors. The closest I can come to describing it is like being locked inside a lava lamp. In addition to the nausea, I would often have head pain and chest pain. I hated going to sleep. Seemingly overnight, these seizures were there one day and gone the next.

Being me, I wondered what it changed and began to pay close attention— looking at the type of yoga I was doing, the level of my isolation, the time of year and temperature, etc. I got my definitive answer one day when I accidently ate something I thought was gluten free and it wasn’t. The seizures came back full force making me very sick and very sure that the diet was working.

Perhaps not everyone is this sensitive or will be this successful with the diet, but research into the nature of gluten and soy lead me to believe that the elimination of them for those of us with seizures is as important as it is for those with gut conditions.

So how is life without ice cream, pizzas and pasta? It’s just fine. I am nearly 30 pounds lighter, I am stronger and healthier and, oh, yeah, having fewer seizures.

Drink me

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“It was all very well to say `Drink me,’ but the wise little Alice was not going to do THAT in a hurry” Alice’s Adventures in Wonderland by Lewis Carroll

The most extraordinary event happened about three weeks ago. Our family was gearing up for the wedding of my younger daughter. The wedding was out of state, outside and, well, large. All three of these things scared the tar out of me. Of late, I had felt so fragile that the idea of a trip out of town, lots of people, noise, emotion, and food I could not eat left me more anxious than eager.

I could take all my own food and store it in the kitchen at the suite. That wasn’t a problem. But what to do about the back-to-back schedule and all the people? I did not even want to think about the reception with a loud, live band.

The week before the wedding, I attended a baby shower with about 30 other women in the home of the honored guest. Women sat around the living room on couches and chairs borrowed from other parts of the house, balancing small plates of chips and carrots on their laps, and quietly catching up on family news. I left the shower in tears. My head had begun to hurt and I could feel the seizure cycle begin as the sounds lost their natural layers  and began to press in on me at one level.

My skin began to crawl and I wanted to run. Run out, run away. Which was kind of funny because my gift was the children’s book The Runaway Bunny. I wanted to get out of there as quickly as possible and hide in shame. Why I felt shame is anyone’s guess since I did not display any of this to anyone inside the house. There is some kind of nasty, automatic response with respect to shame.

In the car on the way home, my older daughter looked at me and said something to the effect that she was worried: If I couldn’t handle the obviously tame environment of a baby shower, how was I going to make it through the wedding? I was worried, too. The memory of running out of my daughter’s graduation rather blindly into the rain because I was having a seizure and I HAD TO GET OUT OF THERE was still a fresh my mind.

On that occasion, my husband had seen me go by and chased me down, talked to me in the rain and led me back. He also did this a lot in Hobby Lobby until we figured out the fluorescent lights were causing seizures.

During the graduation I had seen the kids lined up in their robes turn into animals, as in giraffes and baboons and pigs. I hadn’t mentioned it to my husband. He seemed busy trying to keep the family group organized. Live and learn.

So on this particular day when the extraordinary thing happened, I had thoughts in the back of my mind about how I was going to deal with my body and how I was going to make it through what should be one of the happiest days of my life.

I was standing at the sink when a car pulled up and my older daughter rushed into the house holding a clear bag containing a plastic bottle of liquid. She handed it to me and said, “Drink it.” The liquid turned out to be a custom blend of oils belonging to a friend of hers who had Lyme disease. This liquid had brought her friend back from the depths of depression and pain. My daughter was sure it would do the same for me.

“Drink it.”

At this point, I would like to say the difficulties of the last eleven years and the love and gratitude to my family for never giving up went through my mind as I gradually poured a tiny amount into a spoon.

That is not exactly what happened.

I was scared of this stuff. After all, I had side effects from everything. This was not even blended with me in mind. What was I thinking? Well, I was thinking of the wedding for one thing. When you are backed up against a wall, you will make unexpected decisions. I looked at the bottle for a couple of days while I justified not taking it because of the ibuprofen I had taken for a sinus headache. Finally, two days after I got the bottle, I drank a tiny bit.

Nothing happened.

At first.

I kept mentally checking everything, worried I would break out in hives, go psychotic, or begin projectile vomiting (that was the clove oil experiment). But nothing happened for several hours. Then I noticed I felt no nerve pain. It was simply gone. OK, well, that was huge. I was excited. I could lie flat in bed and not sway back and forth to deal with the pain. There was no pain. And, I would find out later, there would be no seizures for a week. When I did have a seizure, the impact was reduced and the recovery time was much faster.

I took my tiny bit of oil and got better. When it came time for the wedding and the gauntlet of relatives and friends, of laughter and frustration, of nerves and sound and tears and joy, I made it through just fine. I saw everything, felt everything, and heard everything without losing control of my body or mind. I even made it through the reception with the live band. I danced with my husband. Something I thought I might never do again. I felt normal and whole and incredibly grateful.

The custom blend came from a chemist. I met with him over the course of an hour or two. During that time he was interrupted by other customers who had serious conditions, such as cancer.

He is an expert in plants and has degrees in chemistry and God only knows what else. He showed me the plants he was growing, such as sandalwood and lavender, and explained what he was going to harvest from them. I saw the green house he was building, went through his business and looked at all the oils and soaps. It all looked pretty normal, but it’s not because he knows how to really use these things.

He gave me a lecture about purity and the FDA failings. He held up a bottle of Argan oil bottled in France and explained that the brand I was using was probably tainted, and why.

So much information. But this man knew what to use to heal. Could it really be this simple? Apparently.

I have experienced a major change over the last three to four weeks. I never experience depression anymore, my seizures are manageable (when I have them), my body is strong and relatively free of the nerve pain. The best part is the hope and creativity I feel now, which I once thought were lost to me forever.

I have no idea if this will last, but this time I am not wasting a minute of it.

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.