I've spent much of the day on the pity pot thanks to a paralyzing headache that started shortly after 7 this morning. The Amazing Egyptian Dude woke up much earlier than usual and told me that he would be going to the business as soon as he finished drinking a cup of coffee. I had been up for a couple of hours already and laid down on the couch for a short nap before class.

I don't know how long I slept before that familiar brain freeze type pain struck on the right side of my head. That's the kind of headache that makes moving next to impossible. Although the oxygen tank was right beside me, I couldn't get up off the couch to turn it on or to put the cannula on. I just lay there, frozen in time like the Lady of Shalott. Then I heard the Amazing Egyptian Dude! He hadn't left early after all. When I get these headaches and need to get his attention, I whistle; he's got some significant hearing loss and would never hear me if I tried to call him with words because the pain is so intense that barely a whisper comes out.

I whistled and waited.

And I whistled and waited.

And I whistled again.

Nothing.

I could hear him across the room but just couldn't muster the strength to do anything else to get his attention. It took several attempts, but he finally came over to check on me. Turns out he had heard me from the beginning but thought that I was dreaming and making noises in my sleep, so he decided to hang around to wake me up for class!

Cafergot and oxygen later, I could move at least. The pain had dulled to a livable level but the time that happened, it was too late for me to go to class. Besides, I try not to drive on headache and seizure days.

So I missed my class today, The Brain bit me in the butt big time, and I am frustrated as all get-out over the whole damn situation. I've never been "normal," but this level of uniqueness is really getting to me. I want to be in control of myself for a change instead of taking the passenger seat to The Brain and its electrical thrill seeking.

I miss me. I miss my life.

Is that the sound of the wahmbulance I hear in the distance?

We have a family owned and operated business that keeps us pretty busy. Each of us takes care of a certain aspect of the business and together, we keep it running fairly smoothly most of the time. And then, there are those days when The Brain gets in my business and prevents me from taking care of business, thus adding stress to everyone else's business. Such has been the case for the past two weeks.

Iman, our newlywed daughter, takes off every other Friday because her Awesome Egyptian Dude, has the day off from his job. (Note that my Egyptian Dude is Amazing, hers is Awesome.) Under normal circumstances, this isn't a big deal because I am in the office picking up the slack that her absence leaves. But when The Brain asserts its authority, things get really interesting on these Fridays. Like yesterday, for example.

The day began with a headache. Not a bad one -- certainly not bad enough to cause me to test out the newly acquired oxygen tank, not even bad enough for me to take more than 2 Ibuprofen to knock it down. The dull thumping was definitely something I could deal with, and deal with it I did. I processed orders for shipping, answered telephone calls, and shuffled paperwork all around for several hours without incident. The Brain maintained its presence but instead of taking center stage, played overseer to my activities from behind the scenes; however, The Brain couldn't be without the spotlight for very long. And so it was that during a phone conversation with my favorite aunt, The Brain, flipped the switch and sent a jolt of electricity through my body. Thankfully when the seizure came, I was not the one talking; I was listening. When The Brain decided that playing shock therapy was no longer fun, the usual coughing fit began.

A cough, cough here. My aunt began to sense that something wasn't right.

"Your headache isn't making you cough like that, is it?" she wondered.

"No," I answered honestly. "My headache isn't that bad, really." My family worries too much about me, and this call wasn't about me, no matter what The Brain thought. My aunt returned to the conversation, and The Brain returned to the coughing.

A cough, cough there. And my aunt pauses. "Are you sure that you're ok?" How do I tell her, without freaking her out, that I had a seizure? She worries enough already and, like my other family members, knows that stress is the typical trigger for my seizures. If I tell her that I had one while she was talking to me, she'd end the conversation, worried that she had been the cause. "I'm fine," I reassured her. But The Brain had other ideas.

Here a cough, there a cough, everywhere a cough, cough. "Carleen," my aunt said nervously, "something is wrong! Why are you coughing so much?"

"It's nothing, really. I had a seizure, and the coughing is The Brain's way of letting me know that it's finished. No biggie," I told her. A seizure that is followed by so much coughing is one that requires a nap right away, and I knew that; however, I was not about to cut off the conversation and leave my aunt worrying.

I fought the need to sleep and finished the conversation. It was mid-afternoon and I knew that if I took a nap at that point, I wouldn't sleep at night. The Amazing Egyptian Dude, who had wandered in and out of the office during the whole thing, packed me up and took me home as soon as the call ended, hoping that I would give in to The Brain's demands and sleep.

I did fall asleep, but not before an amazing thing happened. In Greek mythology, Zeus gives birth to his daughter Venus in a most unusual way: fully formed and already an adult, Venus emerged from her father's head. I am now convinced that The Brain studied Greek mythology a little too much in college because,


after intense labor that included four more seizures, a Diva was born yesterday. Why? Because The Brain is convinced that it's

First, I have to say that I have the most amazing neurologist ever! Not only did she squeeze me into her tightly packed schedule, but she did so on her own time. When I got to the clinic today to sign in, the receptionist was confused because Dr. S, according to the schedule, was not in today. Following the instructions that Dr. S emailed me at 8 last night, I was to tell the receptionist to call upstairs for her. When Dr. S's assistant didn't even know that I was coming in, that's when I knew what this wonderful physician had done for me. I wish that everyone had such a caring physician!

Because I didn't want to take up too much of her time, I made a list of symptoms on the notepad on my marvelous iPhone. Dr. S read the list, asked some questions, checked reflexes and so on, and then told me what she thinks the problem is. She is pretty sure that I am having clusters of cluster headaches with a few migraines thrown in for good measure. So what do we do for them?

First, I will be adding a new medication to my ever-growing pharmacy. I've forgotten what it's called, but it's a medication commonly prescribed for high blood pressure that also works well for migraines. My blood pressure is fine, so that's not an issue. I'll start on a low dose of 40mg twice a day. The pharmacy in her clinic didn't have the med; however, the one closest to my home does. The Amazing Egyptian Dude will pick it up on his way home.

Second, oxygen. Oxygen, says Dr. S works wonders on cluster headaches. Soon, the pharmacy will deliver an oxygen tank and mask to my home. Then the next time I get a cluster headache, I am to use the oxygen for up to 30 minutes, and it should solve the problem.

We shall see.

On Friday, I wrote

And as for the weekend, tonight I'm looking forward to watching the new documentaries I got for my birthday, tomorrow my plans include catching up on the laundry, and Sunday, I want to see what happens!

I often wonder how I maintain a sense of optimism, of making plans for things to do in a few days because no matter what I want to do, The Brain has a habit of getting in my way.

The early part of last week was dominated by seizures, those pesky electrical jolts that The Brain uses to let me know who is boss. I should have known that headaches would soon follow, as the two are best buds. Wednesday, Thursday, Friday, and Saturday found me crumpled up on the couch in a feeble attempt to sleep off the pain without much success.

Because I never got headaches in my younger days, I had no way of sympathizing with my friends who did. My attitude was that you take an aspirin or a Tylenol and get on with life. But that was before I experienced one! The Mayo Clinic has an online migraine self-assessment test that I took yesterday, during a period when the headaches were on vacation. Here's my result:

Your answers indicate that you're currently experiencing a severe level of disability as a result of your migraines.
It's important to talk to your doctor about strategies for coping with your migraines. Because your level of disability is severe, it's likely that your doctor will recommend a combination of acute and preventive medications to help you cope. Preventive therapy can help you control migraines before they happen. Acute treatment involves taking medicine to stop the pain as soon as a headache begins.

Yep, been there and done that. I have a cornucopia of medications at my disposal and use them when necessary. Between migraines, ice pick, cluster, and pressure headaches, it's often challenging to determine which medication to take. And because I don't want to rely on the medications, I always start with Ibuprofen. If I catch it early enough, 800mg of Ibuprofen will usually take care of the ice pick, cluster, and pressure headaches, but the darn migraines are a completely different story! For those, I have a pill to take as soon as the pain begins. Most of the time, it works like magic; for the times when it doesn't, I can take a different pill to help bring it under control.

So, despite the plan to watch my new documentaries, catch up with the laundry, and see what exciting things I could do on Sunday, I spent the weekend at war with The Brain. Again.

Way back in the day, I began this blog as way to distract myself from the daily ups and downs of living with a degenerative illness that sometimes knocks me soundly on my butt. It took some time, but it has now become a much enjoyed part of my daily routine -- except on the days when headaches and seizures plague me like they have for most of this week.

I have made a conscious decision to avoid life on the pity pot. In this regard, I am absolutely Stoic. We often associate a lack of emotion with the Stoics, but these guys were far from emotionless; they just chose to avoid emotionalism through the use of logic, reason, and reflection. Like the Stoics, I know that I have no control over Chiari or what it does to me; however, I do have control over how I deal with it. I can make a conscious decision to perch perpetually on the pity pot, or I can choose to plop on the pity pot only as needed and to work with what I have and who I am now to the best of my ability the rest of the time. I nearly always choose the latter.

This past week, however, has seriously tried my determination to avoid feeling sorry for myself. I've had the hurts-to-breathe headaches every single day since Sunday. Thankfully, the medication has helped to bring them under control fairly quickly; however, they are so debilitating that it's hard for me to clear my head of the fog they bring and to focus on tasks. Add seizures, which I had on Tuesday and Wednesday, to the mix, and I become a real mess, really quickly.

To deal with the down time, I've learned to write my meme posts way ahead of time whenever possible and to schedule them to go live on the appropriate days. This makes my blog look like all is peachy keen in my little world, even when I'm curled up in a fetal position on the couch trying desperately to make the world go away. Unfortunately, what I can't do is respond to comments from the couch. And that is the whole purpose behind this post.

Peeps, it's been a miserable week, and I haven't been able to respond with any regularity to your comments. I am truly sorry. I know how important comments are in the blogosphere, really I do, and I appreciate every single one that is left for me. Please don't think that I'm not grateful or that I am ignoring what you have to say; this is not the case. If I don't reply to comments, it's because I'm looking for the toilet paper while I sit on the pity pot or because I'm playing roly-poly on the couch and haven't found a way to uncurl myself and still breathe.

So, here's to the end of the week:

I live with a degenerative and progressive brain condition called an Arnold Chiari Malformation. My Thursday Thirteen for today was inspired by Thom, who didn't realize that I had had brain surgery and dug around here to find out why. Here's a list of 13 facts about ACM.

1. Arnold Chiari Malformation is the medical name for what I like to call a brain fart. In a nutshell, people who have ACM have brains that are too big to fit properly inside their skulls. Although I like to think this is just because we're so doggone smart, medical evidence does not support this hypothesis. Because the brain doesn't fit like it should, the tonsils (foramen magnum) hangs down, outside the cavity of the skull, and into the spinal canal.
2. ACM is a real pain in the butt. . .er, head! The spinal canal is made just big enough to hold the spinal cord so when a protruding piece of brain scoots down in there, life can get really complicated. Things like killer headaches, dizziness, nausea, vertigo, tingling sensations, difficulty swallowing, double vision, difficulty hearing, balance issues, and insomnia are just a few of the symptoms that ACM triggers and that ACM patients deal with on a daily basis.
   
3. Size does not matter with ACM. Some people have very small protrusions and suffer considerable pain, while others may have a larger protrusion and never have a symptom. In my case, a chunk measuring 8 mm -- not really big, but definitely not small -- sits in my spinal canal. If it hadn't been for the fact that I suddenly began having headaches so painful that it hurt to breathe, I would have never known that I had a problem.
   
4. What comes out, can't go back in. If the brain breaks free of the dura mater, the protective membrane that surrounds it, it can never be put back inside. The solution to this problem is surgery. To allieviate the pressure that this piece of brain puts on the spinal cord, decompression surgery, typically composed of three parts (craniectomy, laminectomy, and duraplasty), is the most widely recognized treatment.
   
5. If undiagnosed and treated, ACM can cause paralysis or death. Dr. G, Medical Examiner, part of the Discovery Health Network's programming, had an episode about a young man whose ACM was undiagnosed and who died because the brain protrusion pinched his spinal cord.
   
6. No known cause or cure. Although many physicians believe that ACM is a hereditory problem, there is no definitive proof of it. Nobody in my family has the problem except me, but Julie Carter, a Chiari activist, and all three of her daughters have it. If you're a fan of Extreme Makeover: Home Edition, you might be familiar with the Carter Family; they received a home makeover from ABC a couple of years ago.
   
7. Classified as a rare disorder by the Office of Rare Diseases (ORD) of the National Institutes of Health (NIH). What this means is that ACM affects less than 200,000 people in the U.S. population. Ok, so this just means that I'm special -- I can live with that!
8. I'm a Zipperhead! What's a Zipperhead, you want to know? That's the nickname that Chiari patients call a decompressed Chiarian. After the surgery, the back of your head looks like its been closed with a zipper, and that's where the nickname comes from.
   
9. Getting a diagnosis is not easy. Because ACM triggers so many different and seemingly unrelated symptoms, most ACM patients don't get the proper diagnosis for many years. This was my case. The problem was clearly present in my early teens, but I was shuffled back and forth from the ENT to the family doctor to a gastroenterologist. Back in those days, the MRI was not available and since it is the now the way that most people are diagnosed, I can't blame any of the doctors who treated my symptoms without getting to their root cause. I just had to wait until technology caught up with them.
10. Decompression surgery can alleviate some of the symptoms, but it doesn't solve the problem. Because of #4, surgery doesn't solve the problem; however, it did help to control the symptoms better. After I had surgery, the headaches occurred less frequently, which is good. I still have problems with double-vision, my balance is so bad that my neurologist joked how it's a good thing that I don't drink because I would never pass the standard police drunk test (heel-to-toe walking a straight line), my depth perception is so off that I can't see well enough to walk down a flight of stairs or even a curb without falling, and I have complex-partial seizures that come from the right parietal lobe of my brain. The remaining symptoms may sound bad, but I manage to live a relatively "normal" life with them.
    
11. ACM is more common in women than in men. I like to think that this is just because we're naturally smarter, so our brains are naturally bigger! It's not likely that the medical community supports my findings, though.
    
12. Roseanne Cash, daughter of country music legend Johnny Cash, is also a Zipperhead. She had decompression surgery in December of 2007. Maybe it was ACM that was causing her "Seven Year Ache." Ok, that was a very bad joke!
    
13. ACM is an invisible illness. Because people can't see the piece of brain that hangs out in the spinal canal, they often misjudge a patient's reaction to the symptoms. Our society is trained to look for visible symptoms of an illness -- watery eyes and sneezing for allergies, red bumps for chicken pox, coughing and a stuffy nose for a cold, etc. -- and when none are present, judgment of the patients who suffer from invisible illnesses tends to be rather harsh. Perhaps because my invisible illness involves The Brain, that most sacred of internal organs (muscle just doesn't sound as dramatic here, sorry), I am treated far more kindly than someone who has Lupus, for example. This is just plain wrong!

I hope that my list has enlightened your world. If you want to know more about ACM, my symptoms, or decompression surgery, there are lots of links in my sidebar.

If you'd like to join in on the Thursday Thirteen fun, click here.

No smiles today, just frowns I've got.
It's time for a rest on the pity pot.

I'm sad, I'm cranky. It'll be a day or two
Of feeling down, of feeling blue.

This isn't just a simple mood swing,
It's an honest to goodness pity pot thing.

You must admit that I've earned this spot
Right up front on the pity pot.

It's just so hard to keep this smile.
I need a pity pot break for just a while.

So give me time to wallow a bit.
I know real soon that I'll get over it.

The clouds will part and the sun will grow hot,
And I'll jump right off this pity pot.

This morning started out right nicely enough. I woke up early, got everything ready to begin grading essays, and was all set to put the past few days' worth of seizures behind me. I had heard something on the news that I just had to share with the Amazing Egyptian Dude, so I got up from my computer desk and began to amble over toward the living room. Maybe half a dozen steps into the trek, and I'm hit with the headache -- the one that makes breathing painful and moving excruciating. It nearly always starts on the right side, as that's the side of my body that Chiari seems to like torturing the most.

I grabbed my head and wobbled over to the couch, where I collapsed in a groaning heap. Whether my cats can sense something is wrong or they just like me being a captive audience for their affections, I don't know; but just seconds after I got myself situated comfortably on the couch, I had one cat at my head, one on my chest, and another on my feet. I fell asleep that way. See when I get these pressure headaches, the only way to deal with them is to sleep them off. Although I did manage to sleep, I awoke with a headache and a droopy right half of my face. If you've ever seen anyone with Bell's Palsy, then you'll know what I mean by a droopy face.

The headache is gone now, but I am wiped out. I am confident that I've earned this break on the pity pot, and by golly, I'm going to take it!

Because the really, really good ones are so few and far between for me, I feel the need to celebrate the genuinely good days when I have them. Today has been one of those rarest of gems.

Nothing out of the ordinary happened, but perhaps that is what has made today so good; it was deliciously ordinary!

Hey you misfiring mass of mighty matter,

What the hell is yanking your chain these days? You might find this difficult to believe, but the increased frequency of electrical overload that you have unleashed over the past week is not exactly my idea of fun!

Do you have any idea how not cool it is when you send out a surprise attack of the shorted switching stations while I'm trying to eat? I swear to you that I've really tried to find humor in the waves of nausea; I've looked for something pleasant about the painfully sharp tingles that run like fire ants up and down my right arm; I've tried to embrace the coughing sessions that tell me you have delivered the last jolt for the time being. But no matter what I do, turning your peak demand deliveries into a joyful experience is just not happening.

As much as I don't like your sudden bursts of energy during lunch, dealing with them when I ought to be on vacation in a chalet atop a mountain in Dreamland is even worse. Hello, your Electrical Eminence, has no one ever told you about the dangers we both suffer when sleep deprivation occurs? In addition to causing the fog that fills the void between my ears, a lack of sleep contributes to memory impairment, an inability to concentrate, a compromised immune system, slower reaction times, and slurred speech. Oh, and I forgot to mention that being too tired makes my eyes burn and water so much, day and night, that I develop oozy, crusty sores on the skin beneath the tear ducts. And the dark luggage that I carry around under my eyes may be full, but the bags aren't packed with comfy jammies for a restful vacation at the Sealy resort!

A couple of centuries ago, at a meeting of truly magnificent minds, a group of forward thinking men drafted a remarkable document. Among other things, this document laid out the ground rules of behavior between the governing and the governed. We call it the United States Constitution. Number 8 on the list of rules states that the governing body shall not inflict any cruel and unusual punishments on the governed. Since you, my Magnificent Monarch, are the engine that runs this incredible machine called my body, you must remember to control your desire to provide me with examples of the shock and awe of your power. I already know how awesome and powerful you are, trust me!

Can't we just get along?

When I was a kid, I had an adorable teddy bear hamster. His cage was on the desk across from my bed. Back in those days, I slept through earthquakes--literally--so Charley's frenzied nocturnal workouts on the running wheel never bothered me. By the time Iman was old enough to want a pet of her own and to be given the care of a hamster, the old saying that squeaky wheels get the oil had taken on a whole new meaning to me. It was then that I began to wish that I could experience the joy of running around on a wheel, joyfully going in circles and getting nowhere without a care in the world. Life with Chiari often leaves me feeling like a hamster on a wheel except that where the hamster enjoys the ride and doesn't care that there's no destination to reach at the end, I find running in circles quite frustrating and know that the more I run toward feeling better, the further away from that elusive goal I get.

I'm still not quite okay after the seizures and headaches of a few days ago. I stayed at home on Friday, thinking that I would get some things done around the house before beginning the grading fest looming on the horizon. Armed with a neatly organized To Do list, I tackled the chores: cleaning the cat boxes, dusting the ceiling fans, washing the curtains, scrubbing the bathroom fixtures. With each item that I crossed off the list, the more empowered and able to complete the next task I felt. It's been a while since I managed to maintain such focus without feeling like I needed to nap between jobs, so it was with a sense of exhiliration that I unloaded the dishwasher and made it ready for another load. And then, like some great cosmic joke with me as the punchline, something pulled the rug right out from underneath me!

With no warning ahead of time, my legs buckled, the kitchen rug slid across the floor, and I landed in a heap with a seizure well under way. Chiari patients sometimes have drop attacks during which muscle tone weakens suddenly and significantly enough that they drop things they are holding or fall if standing. I've had a few drop attacks, but they occur so rarely that I seldom think about them. I'm sure that what happened on Friday was a drop attack followed by, not precipitated by, a seizure. The whole event lasted 45 seconds or so, and I never lost consciousness. My dignity, on the other hand, didn't fare quite so well. :)

The seizure was intense enough that fighting off the need to sleep afterward was impossible, and I gave in to the need for a nap. For a few hours after the event, I felt weak, shaky, and a bit disoriented. I guess that my right leg must have been the one to bear the brunt of the drop attack because it still aches (it's currently 2:16 am on Sunday). I've had a couple of small electrical shortages, with headaches and stiffness in the neck thrown in for good measure, since the attack. Still, I haven't felt the need to bring out the big guns (Cafergot) yet, as I have an incredibly high tolerance for pain and the prescription strength Ibuprofen makes it bearable.

For now, my inner hamster has joined me on the pity pot and together, we're running like the wind on the Chiari wheel of life. Oh, how I wish I could be like Willie Nelson and sing about how good it is to be "on the road again."

Do I hear the wail of a siren in the distance? I sure hope so, because I am in desperate need of a waaaambulance! Someone please call up the reinforcements before my fanny becomes permanently attached to the pity pot!

Ok, so yesterday was just plain terrible no matter how I look at it. The cluster of seizures that began in the middle of the night on Tuesday left me with clusters of headaches on Wednesday that rendered me just about as useful as plastic surgery tips from Jocelyn Wildenstein. I don't give in or up easily and genuinely believe that location matters very little to misery, so I went to the office. (Side note: Ali and I have a business, so "the office" to me means the location of my desk in one of our warehouses.) Besides, pity pots are portable!

Seizures and short term memory are not the best of friends. In fact, they really don't like one another at all most of the time. Thus it should not have surprised me that I completely forgot Ali's dental appointment yesterday morning or my own eye exam appointment in the late afternoon but remembered that I would be missing out on seeing Phantom of the Opera. Back in January, I posted about anticipation and mentioned that I had bought tickets for myself and the niece to see the show on, you guessed it, February 18th! In the heat of the excitement, I hadn't considered that (1) the show started at 8 PM, (2) I live in Orange County and the theater is 35 miles away in Los Angeles, (3) I can't see well enough to drive at night, and (4) I would have to find someone to drive me and the niece to LA then be willing to wait around for 2.5 hours until the show finished.

Ali volunteered to play chauffeur for us. But the closer the date of the show drew, the less I wanted him to make yet another sacrifice for me. I mean, really, the poor guy already hangs out in the car on Thursday nights while I teach a class, so why on earth would I want him to waste yet another evening stuck in the car while I enjoy musical theater? How utterly selfish is that?! Iman and Magdy (daughter and son-in-law) volunteered to drive us and hang around in Hollywood until the show was over, but it's a long drive and Magdy has to be at work very early in the morning. A solution to the problem came to me a couple of weeks ago when it hit me how nice it would be that two birthday girls (Iman on 2-4, Basma on 2-17), both of whom are as crazy about Phantom as I, share the evening together and gave my ticket to Iman for her birthday. It's a good thing I did, too, as I would never have made it to LA yesterday; however, that doesn't mean that I don't get to feel sorry for myself for having to miss out on the show!

With the constant pressure, banging, and throbbing going on in my head, I didn't accomplish anything at the office except to make Ali feel terrible that I was there at all. Ours is a genuine old-fashioned "mom and pop" business. Ali, I, and Iman are the only employees and between us, we manage two warehouses, a brick and mortar shop, a couple of websites, and all the wholesale and retail customers they bring. Since Iman got married last month, she cut her hours by half to make it easier to manage a full-time load of classes while working and adjusting to married life. Add to this the time I spend away from the business to take care of my teaching responsibilities both in and out of the classroom, and you'll see quickly enough that Ali is one heck of a busy man all the time. How could I add to te burden he already carries so willingly?

And so, I spent yesterday on the pity pot lamenting the misery that came in the wake of an avalanche of seizures that triggered an eruption of headaches, mourning the loss of much of my independence, and bemoaning the burdens that Chiari forces me to dump on my family. For now, I'm going to try my best to play like Scarlett O'Hara because, "After all, tomorrow is another day."

As if to remind me of yesterday's discussion about invisible illnesses, my brain took it upon itself to have an electrical surge a couple of hours ago. Of course it couldn't have come before I went to bed because that might have made it much too easy for me to sleep through the night, something I seem to have forgotten how to do.

When it comes to seizures, most people automatically think of the worst type -- the kind that causes eyes to roll to the back of the head, tightens muscles so that they twitch and spasm, and leads to an unconscious flailing about of the body under assault. I used to conjure the same image of a seizure -- until I learned that scar tissue on the parietal lobe of my brain indicated that seizures had long been a part of my life without me even realizing it.

I have complex partial seizures that occur on the right side of my brain, in the parietal lobe, and seldom cause me to lose consciousness. It may look as if I have mindlessly drifted off into an alternate universe, but I remain very much aware of what goes on around me during a seizure. I do, however, lose the power to respond while neurons perform the jive across the stage of grey matter in my head. The seizures often occur in flurries or clusters, meaning that the first one acts a trigger for others. My husband describes them like an earthquake and aftershocks; those of us who live in Southern California know that after an earthquake, aftershocks are a given. My seizures act the same way.

So, what happens when I have a seizure? Some people who deal with seizures have an "aura," or a way of knowing that one is coming. I am one of those lucky folks. In fact I'm doubly blessed because I have two signals to alert me that my brain is about to experience an electrical overload. The first aura is a burning smell. When I start sniffing the air, checking out the stove and appliances, examining electrical outlets, and asking if anyone else smells something burning, look out -- a seizure is on the way. With this aura, I never know when the event will happen, just that it will. The second way that I know to prepare myself for a seizure happens very quickly and when it does, I know that a seizure will hit me in a hurry. This is the most frequent beginning to a seizure for me.

A gentle tingling sensation at the bottom of my feet is the first signal. I'm not ticklish (except between my toes), but I can imagine that the feeling must be similar to what those who do have ticklish feet feel. In a matter of a second or two, the tingling in the feet is followed by the strongest feeling of nausea I have ever experienced without actually barfing my guts up. As soon as the nausea happens, I know what to expect and sit down if I'm not already seated. I've only gone down twice during a seizure, but those two experiences seriously traumatized me. Lying in a heap on the floor and drooling all over oneself is not very pleasant, nor is it particularly graceful looking!

After the aura pays me a visit, a light film of sweat will break out on my upper lip, saliva will begin to fill my mouth more quickly than normal, I may feel hot or flushed, then the right arm will begin feeling numb. At about the same time that the arm goes numb, I just drift off. To those who see me when it happens, I appear to be daydreaming or staring off into space. When the electrical activity in the brain starts to settle down, I will begin to cough -- sometimes quite violently, especially if the seizure has lasted longer than 30 seconds -- and shake my arm to relieve the numbness. The coughing spell sometimes lasts 5 or 10 minutes, during which time I am coming out of the seizure.

The length of the seizure determines the amount of time it takes me to come out of it. On the days when I have clusters, the seizures themselves don't last any more than 30-45 seconds but with each one, coming out gets increasingly difficult. No matter whether the seizures occur in clusters or not, I am compelled to sleep afterward. I've tried to fight off the need to sleep but doing so only exacerbates the problem and often triggers additional seizures.

My neurologist assures me that once we find the right medicine in the proper dosage, the seizures will be fully controlled. I can't wait until that happens!

If you overlook the luggage under my eyes from chronic sleep deprivation, the wobbly walk that comes with disequilibrium, the funky way I step down from curbs to avoid falling off them, or the way I have to tilt my head to avoid seeing double, my very serious and very real illnesses are invisible to most of the world. I'd never thought much about this invisibility before reading the latest post on Prof S's blog and following it up with Michelle's post, the one that got Prof S thinking on the subject. But now that I'm contemplating the subject, it's clear to me that I've been damn lucky. Instead of getting "But you don't look sick!" comments, I receive accolades for "holding on so well," "fighting bravely," "overcoming obstacles," and setting an "inspirational example" for others. My illnesses are as invisible as fibromyalgia, chronic pain, Lupus, and migraines, among others, yet when I tell people about them, the response I receive is always positive and sympathetic. Why?

Strangers who look at me won't see the piece of brain that hangs down in my spinal column, nor will they see the majority of the symptoms this miniscule protrusion causes. Arnold Chiari Malformation is an invisible yet progressively debilitating condition. Unless I am actively seizing, people will never know that I have Epilepsy, either. On the surface, I look fine, peachy keen, hunky dory, and above all, healthy. But perceptions can often be deceptions, and I think this may be the case with most illnesses.

Society has conditioned us to look for physical signs of illness such as a cough and stuffed nose for a cold, withered and twisted hands for rheumatoid arthritis, or tics and outbursts for Tourette's Syndrome. The reality, though, is that most illnesses -- even the ones we know best -- are invisible! Can you look at someone and just know that (s)he has cancer, diabetes, or heart disease? Not likely because although we know and fear these illnesses, they are every bit as invisible as Lupus, fibromyalgia, chronic pain, ACM, and epilepsy.

I believe that the positive feedback the explanation of my illnesses draws from strangers has to do with location, location, location more than anything else. ACM and Epilepsy originate in the brain, the body's epicenter. No other organ, except maybe the heart, inspires as much fear and awe as the mass of grey matter that lives in our heads. When I have a bad day and people hear about it, I get positive responses and sympathy because my conditions are neurological. And when people hear that I've had brain surgery, their reactions are even more kind and sympathetic. But I'm sure that if I were to tell strangers that I suffer from chronic pain, their reactions would be mostly negative. Aches and pains are a normal part of life, right? We all have them and ought to learn how to cope instead of concocting a condition for them. Sound familiar? This is where ignorance comes into play.

Ignorance of an illness does not make it any less real to the people whose lives are wrapped up in it. Just because we can't see what causes the pain of fibromyalgia doesn't make it a figment of someone's imagination. Unless I went around flashing the now faded red badge of courage that extends from the midpoint of my skull to slightly below the point where my neck is connected to my shoulders, nobody would know that I have an illness, either. But because I can say that a skilled neurosurgeon alleviated some of the symptoms associated with ACM, I get slack that others don't. Pain and misery are pain and misery no matter where they originate!

It was bound to happen sooner or later. So when it did finally happen this afternoon, why was I so unprepared for it? Why do I feel so embarrassed, ashamed, and humiliated by it?

The inevitable happened in my afternoon class today. I had a seizure. It wasn't bad and didn't last long. The usual coughing fit that lets me know I'm coming out of the seizure was mild by comparison to what usually happens. I didn't drool this time, nor did I freeze up completely during the event. And although this seizure was really not a big deal, I was left feeling absolutely and utterly embarrassed and humiliated by it.

Class was about halfway through when I started feeling the all too familiar tingling sensation and nausea that are my body's way of announcing the onslaught of electrical hyperactivity in my head. Right in the middle of discussing John Stuart Mill's essay, On Liberty, and explaining the influence that Mill's "no harm" clause has had on our own incitement laws, I very calmly announced, mid-sentence, to my class, "Please don't be surprised if I start to drool and stare off into space because I'll be having a seizure in just a few seconds." Because the seizure was mild, I skipped only a couple of beats before regaining my composure and continuing the conversation while the electrical wiring in my head misfired for a few seconds. And when it had finished, I coughed and shook my right hand to rid it of the tingling sensation, and went on as if all were right in my world.

Thankfully, I warn my students at the start of each semester that the possibility of me having a seizure is quite real. But I also let them know that (1) it has never happened on campus before (it hadn't until today) and (2) I have two different auras to warn me a few seconds before the event happens. I explain what happens when I have a seizure, let them know that I will warn them before it happens, and reassure them that they don't need to do anything except wait until they see me shake my hand and cough as that is the signal that the seizure is mostly finished. Thus when I announced the impending seizure this afternoon, they remained cool, calm, and collected. Perhaps it helped that I didn't panic despite my embarrassment.

Having a seizure, no matter how mild, in front of my students is something that I had prayed would never happen. Now that it has, I need only to find a way to deal with the sense of shame that the experience has left behind.

I remember watching Sybil, starring Sally Field, way back when I was in high school in the 70s. Sybil, the victim of physical and sexual abuse as a child, developed a multiple personality disorder as a result. She didn't know why, but Sybil often lost track of time -- whole days, sometimes several at once, went missing from her memory and left her confused -- when an alternate persona took over to help her deal with whatever crisis she faced. I'm beginning to feel a bit like Sybil.

For the past several days, I seem to have lost the ability to keep track of the day of the week and the date. On Saturday, I called my dad, who was scheduled to have hip replacement surgery on January 19. I don't know why, but I thought that Sunday was the 19th and was shocked that my dad would be having surgery on a Sunday. Nobody has surgery on Sunday unless it's an emergency! Dad set me straight on the day and date, and I made a mental note of the correction. At least I thought I did. . .

I've been waiting a few weeks to see my neurologist. I even mentioned it in my last post. Armed with my list of concerns, I waited in line for my turn to check in. Imagine my surprise when the receptionist, with a surprised look on her face, said, "Ma'am, you have an appointment with Dr. S, but it's not until tomorrow." Tomorrow? Ironically, as I left the reception area and headed for the car, the reminder notice that I had set on my iPhone calendar flashed across the screen.

As I looked over my last post, I see quite clearly that despite my dad setting me straight about the day and date on Saturday, the confusion continued. For God's sake, I've even got the day of the inauguration all wrong!

Is this what happens when one suffers from sleep deprivation?

When I was five, my Aunt Naomi introduced me to . I've loved The Beatles' music as far back as my pitiful memory stretches, and today I feel as though I am living the lyrics to one of their songs:

Yesterday, all my troubles seemed so far away.
Now it looks as though they're here to stay.
Oh, I believe in yesterday.
Suddenly, I'm not half the man I used to be,
There's a shadow hanging over me.
Oh, yesterday came suddenly.

Yesterday was good and for several hours, my troubles were far away. I dropped the kids off at the train station and wished them well as they rode off for their honeymoon in Santa Barbara. Heck, I even managed to pack and prepare shipping labels for 19 post office packages yesterday! I was tired -- really, really tired -- but managed to function quite well in spite of the nasty Santa Ana winds and the need for a nap. For the majority of the day I forgot about Chiari, and it was wonderful!

Like Cinderella whose fairytale day ends at midnight, mine came to a painful end right about the same time, reminding me that my troubles are here to stay. A pressure headache woke me from a sound sleep. This is the worst of the Chiari symptoms for me. I've never experienced anything as painful as a pressure headache. The CSF (cerebrospinal fluid) flow is sometimes blocked by the protruding tonsils of the brain with the result being a build up of pressure in the head. When these headaches occur, it feels as though my brain is swelling to the point that it will no longer fit inside my skull. It hurts to breathe, so my breathing becomes strained and somewhat shallow. The pressure behind my eyes is so intense that I could swear they will soon pop out of my head to make way for my gargantuan brain. The muscles in my neck and shoulders tense up in response to the pain in and the weight of my head. Even the slightest twitch is agony because all movement originates from the spinal cord which is connected to the brain which is trying to free itself from a space too small to contain it comfortably.

Ali usually fetches the medication and a glass of water for me when I have a pressure headache, but he had come home from the warehouse much later than I and had fallen asleep on the couch. It was up to me to drag myself out of bed and make my way to the kitchen. With no lights on and me seeing double and disequilibrium making me very unsteady on my feet, I managed to shuffle my way there and back without stepping on a sleeping cat or tripping on the edge of a rug. Sleep returned once again, and all was right with the world until the second headache struck just a couple of hours later. Because I had already taken the medication, I had to wait out the second one. And then, shortly after 5, the third one struck. It isn't as bad as the first two, so I took some Ibuprofen and determined to just work my way through it. So here I am.

It has taken me more than an hour to compose this post, but the good news is that the headache has disappeared Grendelesque into its cave where it waits for the next opportunity to strike in the dark.

Pull out your violins and prepare to play the saddest song you know. I need it. I've earned it.

The health insurance issue is hitting home in a big way. Stress is the primary trigger of my seizures and like my neurologist said, "If you're alive, you have stress." I just seem to be a lot more alive than usual these past two days, as the seizures are coming on full force. On the bright side -- yes, Virginia, there is a Santa Claus and a bright side to this otherwise crappy situation -- the seizures are not coming in clusters, and that makes them easier to deal with. For that, I am genuinely grateful.

While there is a bright side, I would be remiss to ignore the dark side of this force that grips the electrical system that controls my body. The nausea that accompanies seizures and often lingers long after, has intensified incredibly. Same for the need to sleep afterward, although I won't complain about that one. With the nausea comes drooling and the stronger the nausea, the more I drool. I'm thinking that a bib would be a nice thing to have right about now.

As I write, I am coming out of a seizure that happened 2.5 hours ago. I slept for 40 minutes and am fighting sleep now in the hope that if I can stay awake for a little bit longer, I might actually sleep through the night. Wish me luck!

For the past few days, I've been in a funk. The health insurance issue is eating away at me, worrying me far more than I am used to worrying about anything. For the preservation of my mental health, I strive to follow a basic tenet of Stoicism. In a nutshell, the Stoics argue that our misery stems from the fact that we focus our energy on the things that happen to us, things over which we often have little or no control, instead of shifting our energy to reacting to the things that happen because we do have control over our own behavior. For example, I had no control over whether or not I would get Chiari, I just did. However, I can control how I react to having it; I can choose to sit on the pity pot and make everyone around me as miserable as I often am, or I can deal with the situation, do what I can when I can, and go on with my life. But this worry about health insurance is a tough one to work with! I've done everything that I can at this point and now must wait to see what happens.

I don't usually linger on the pity pot and hope that I'll soon be able to pull myelf out of the funk. Maybe it's time to look for a new hobby?

During the night, when I can't sleep, the portable DVD player that sits on my dresser surrounded by piles of DVD cases, is my bestest friend in the whole wide world. I bought it to help keep me entertained during my recovery from brain surgery. As it turns out, I didn't really need it then; however, I make regular use of it now.

Although documentaries typically occupy the hours when I am awake and the rest of my household is asleep, I've recently discovered the joy of boxed set television shows. I don't watch much television, except for American Idol and Dancing with the Stars, so when several students in one of this semester's classes kept recommending that I watch Lost straight through from the first to the fourth seasons, I politely declined. My sister and I had watched the first three episodes of Lost when the show premiered, but it just wasn't interesting to either of us. What possessed me to give in to their advice escapes my memory, but give in I did. Thus was born my current affection for watching TV shows, season by season, from DVDs.

Now that I am current with Lost and awaiting its fifth season premier on January 21, I am now watching Boston Legal. Ali and I both enjoyed The Practice when it was on, so it was nice to see familiar characters on Boston Legal. But there's something else about the show that touches me, and that is the character of Denny Crane. One of the first season episodes reveals that Denny has signs of the early stages of Alzheimer's, an issue that he struggles with from that point forward. Despite Denny's otherwise atrocious behavior, his very human response to the degenerative nature of Alzheimer's is something that I know; it is part of my everyday life.

Between the Chiari and the seizures, I find myself struggling to pull from the recesses of my mind things that I know but can't locate as easily as I used to. Simple words and ideas lurk in the caves and shadows of my mind in Grendelesque fashion, slinking out and retreating at will, as if to show me who is boss. Because I have an incredibly high pain threshold, dealing with the physical pain that comes with Chiari hasn't presented me with nearly the crushing feeling of defeat that the inability to recall words at will has done. This, for me, is the most frustrating aspect of having a degenerative neurological condition.

When I first began this blog, it was with the intention of distracting myself from the everyday frustrations of dealing with headaches, sleeplessness, seizures, nausea, etc.; I hoped to focus on anything and everything except those issues. But with a life neatly knotted up with the strings of ACM and Epilepsy, I should have known better. I should have realized that the reality of my life is that some days are fine and others are just plain bad. So bad that it's hard to think of anything else. These past few days have been like that.

Between trying to stay awake and holding back the contents of my stomach in the wake of clusters of seizures, I'm tired. I'm tired of being the cause of my family's worry; I'm tired of trying to explain why I can't control my sleeping habits; I'm tired of the nausea and tingling and dazedness that comes along with the seizures; I'm tired of being tired.

I'm just tired. . .