Friday, July 26, 2013

Me, Myself . . . and Seizures (Part 2)

From Part 1:
"My next blog entry will deal specifically with how people have responded to me, seizure-wise . . . and likewise, my general, thoughts, feelings and outlooks to such responses. My hope is that I will be able to educate, explain and even encourage."

Click here to read Part 1.


The first thing that I want to mention in this particular blog post is that I know that the majority of people have my welfare at heart at regarding things they say to me about seizures.  I *know* this.

Having said that . . .

. . . I would like to address a few things that have come up over the years; things that people have asked, suggested or said regarding me and seizures. 

Please and thank you.

And, while these are my own personal thoughts regarding my own life, perhaps they will also resonate with someone else who has had similar experiences with seizures.

Most people who know me already know that I am a bit anti-pharmeceutical.  "A bit" is actually more than an under-statement . . . I do not even take OTC drugs; not even aspirins and other similar type pills.

I am especially anti-pharmeceutical regarding anti-seizure drugs.  Occasionally, this has proven to be quite baffling to various people in my life; even after I explain my reasonings.  Simply put, in the past, I have tried *many* anti-seizure drugs, and the results were not at all satisfactory; and sometimes, such results were even completely unacceptable.  Since I am the one who is going to have to experience the "side effects" *along with* the inefficacy of an anti-seizure drug, I figure I'm also the one who gets to decide whether or not I take such illustrious drug.  So . . . if you disagree with me on this stance, please do not treat me condescendingly because of it and please do not roll your eyes at me, scold me, criticize me or do anything else that will convey to me your disapproval regarding this very personal decision.

Case in point:  The lady that was asking me intake questions and taking my vitals at the ER the other day did this very thing.  She actually pulled a Dr. Phil on me; and let me tell y'all, dear friends, it was not appreciated - not at all.  After telling her that I had fallen because of a seizure, she then asked me which anti-seizure drug(s) I was currently taking.  When I answered that I wasn't taking any of them, she looked me up and down, stared at my injured face and then said, "And, how's that working for you?"  With the exception of that one instance, she was actually a very nice person.  But.  This very nice person didn't know me from Eve.  She didn't know my case history regarding seizures and she certainly didn't know of my research or my personal experience with anti-seizure pharms.  Nor did she know how very rare it is for me to incur an injury during a seizure (I can count on one hand, with digits to spare, the number of times I have seriously hurt myself because of a seizure).

I'd like to encourage y'all to remember this example.  So often it's easy for us humans to assume that we are capable of immediately ascertaining all the ins and outs of a situation; and then, we feel quite justified in offering our unsolicited expertise / opinions.  But.  Often, it's simply not that cut-and-dry.  Often there are many factors that cannot be known "at first glance".  To assume otherwise usually justs mucks up things and causes some uncomfortable moments.


Throughout the years, some people have assumed that stress is the cause of the seizures that I have had.  Now.  While it is true that stress can cause seizures in some people, it is not an across-the-board trigger; not everyone who experiences a seizure does so because of stress.  Looking back on the past 26 years, I'm very confident that stress is not a seizure trigger with me.  I know this because some of the most emotionally stressful times in my life have been seizure-free, plus some of the seizures I've had have throughout the years happened during incredibly peaceful and/or happy time periods.   There ya go.

So!  :)
When you ask me if I had a seizure because of stress and I indicate that stress isn't a seizure trigger for me, please, please, please do not noticeably disagree with me.  By the way, can y'all imagine how stressful that type of conversation is?  Ha!

How many of y'all have a physical "thing" that you deal with occasionally?  C'mon.  Raise your hands; don't be shy.  I'll put my hand up.  For me, that physical thing is a neurological disorder known as seizures.  Now . . . for those of y'all that have raised your hands, how many of y'all like for people to make mention of that physical disorder, illness, etc. every time they speak to you?

Didjy'all just notice how quickly I put my hand down?

May I just say right here and right now that I truly could happily live the rest of my days without ever being asked, "So, have you had a seizure recently?" (or, "When was the last time you had a seizure?")

Some of the sweetest people in my life feel that they have to ask me about seizures every time we have a conversation.  I cringe when they do this.  I know they are simply expressing their love and concern for me . . . I *know* this.  I deeply appreciate that they do love me and that they care for me.  But, I'd like to suggest that I am far more than just a seizure history.  Ask me about Tex or our daughters or our grandbabies or any of our other family members.  Ask me what I've created in my studio lately or what I think of the most current news item.  Ask me anything; just please don't ask me for a recounting of when I last had a seizure if I haven't brought up the topic.  Seizures do not define me; they are simply a pain in the patoot that I occasionaly have to deal with - and of which I have great hope that one day I will truly be seizure-free.


Here are a couple of tidbits that you may or may not know about seizures:

- Technically, I have epilepsy.  Epilepsy is not a "cause" of seizures; it is simply an "umbrella" word for unexplained seizures; meaning there isn't a physiological reason for the seizure (i.e., diabetic seizures are not epileptic in nature because diabetic seizures are caused by diabetes).   Oh, and while I technically have epilepsy, I do *not* consider myself to be an epileptic . . . I consider myself to be a human being.  There ya go.

- Seizure-control via pharmeceuticals is not always possible. In fact, more than 30% of people who have epilepsy have seizures that cannot be controlled via anti-seizure drugs.

So.  Do you have any questions regarding me and seizures?  Please feel free to ask them here.  I never mind questions; they're great learning tools.  Truth be known, I'd much rather someone ask a question than make an assumption.

Thanks for reading, y'all!
Be blessed,

p.s. - One more thing, please . . . they are not "my" seizures. They are "the" seizures. Yep, semantics are important; most definitely. Want to read where I write the very same thing about 15 months ago? Click Here


Me, Myself . . . and Seizures (Part 1)

If you are one of my Facebook friends, then you probably know that I had a seizure 8 days ago - and that during this particular seizure, or rather, during the fall occurring at the onset of the seizure, I incurred at least one orbital bone fracture (a scientific and pretty way of saying I cracked a bone in my face).

I don't always announce or discuss whenever I have a seizure; but the accompanying injury of last week's seizure made it a bit unique, so I posted a prayer request on Facebook about the whole thing.  And, then of course, it's also hard to go out in public with major bruises and swellings interspersed all over one's half of their face without bringing even a tiny bit of attention to themself.  Yesterday, while I was picking up mail at my mailing center, I also had a package to claim.  Once I got up to the counter, I believe I so unnerved the young employee helping me that I literally had to tell him what he needed to do so I could receive my parcel . . . and the entire time, he was politely trying not to "look" at me while all the time also trying to "look without looking".  There ya go.

One of the reasons that I don't always let people know when I have a seizure is that, well, frankly, it just seems a bit weird to me to make such an announcement . . . it's not the most pleasant of topics - at least, not for me.  Another reason why I choose to not always speak about whenever I've had a seizure is, well, the things that people say to me in response to learning that I've had another seizure often can be "interesting".  Well-meaning, but still "interesting", none-the-less.  Ironically, some of the things that I hear spoken to me regarding seizures are somewhat common; "common" in that it's usually not the first time I've heard it and the person speaking it to me is usually not the first person to say it to me, neither.

The intent of this particular blog post is two-fold:  to educate y'all on how a seizure affects me and to address some of the things that have been spoken to me over the past few days (and sometimes after other seizures, as well).

While I don't particularly find it necessary to publicly proclaim a seizure event every time one happens, I have found it important to educate people about seizures; either in-person or via the wonderful world of wide webness.  Because of that, some of this blog post will already be familiar to some of y'all.  Liken it to a good comedy routine, if you will - comediannes will perform the same act over and over.  (BTW, does anyone else other than me find it strangely curious that I am comparing seizures to a comedy act?  For what it's worth, the comparison was purely unintentional).

Having a Seizure and Recovering from Its After-Effects
The first seizure that I remember having was back in 1987.  It was a nocturnal grand mal seizure; "nocturnal" meaning that it occurred while I was asleep and "grand mal" (or "tonic-clonic") describing the type of seizure it was.  Grand mals are the kind of seizures that television shows and movies love to overly-dramatize.  I cringe whenever I see a grand mal seizure being acted out; truly, I absolutely cringe.

From 1987 - 2000, all of the seizures that I had were nocturnal and grand mal.  Then, one day in early 2000, it was as if a switch was thrown . . . I had a waking seizure; still a grand mal, but it occurred during my waking hours.  For the past 13 years, all of the seizures have been waking seizures; and I would say well over 99.99% of them have also been grand mals.

Some people have auras (warnings that a seizure is going to occur).  There are myriad types of auras; in fact, auras are pretty-much distinct from person-to-person.  For me the auras are very brief and only give me about a 2-second warning before the seizure actually takes place.  And, it's weird.  Freaky-dejavu kind of weird.  The auras I experience involve my "remembering" that whatever I'm doing (at the time of the aura) is actually a seizure trigger.  The "memory" of course is false; as is the impending feeling that the action is a no-no.  It doesn't matter what I am doing at the time of the aura; the aura takes that information and then tells my brain that whatever I am doing is actually a seizure trigger.  There's a momentary sense of panic and then there's also a momentary "call to action" where I know that I need to do something.  Usually, though, by that time, the seizure has already started - and I am thankfully, rendered unconcious.  I'm not being facetious neither - a grand mal seizure is a violence against the body and there are merciful reasons as to why people are unconcious when experiencing one of them. 

Now.  The next thing I remember is waking up . . . usually in bed.  But.  Given that I have not had a seizure while in bed for the past 13 years, how I end up there pretty-much remains a mystery to me.  I have never been able to remember the time period of a seizure beginning from the aura until when I wake up in bed.  I like to think that angels are sent to minister to and take care of me during this time period.  And yes, the vast majority of seizures that I have had have occurred while I've been by myself (or while I was among people, just not in their direct vision.)

There are actually a few "waking ups" after a seizure.  The "first one" that I remember (as mentioned above) is probably actually "the second one", with regards to "coming to" after the seizure.  But no matter, that particular waking up is also like a re-booting for me.  It's then that I have to figure out the most basic of information; i.e, I have to discern who I am, where I am and even when I am - down to my age, and year.  Often I'm unable to pinpoint the day, the month or even the season without help.  I will also call Tex during this time-period and let him know that I have had a seizure.  It amazes me that in all of the after-seizure fogginess that I experience at this point that I am able to even ascertain who Tex is and which phone number is his.  After I re-boot, I pretty-much pass out again and will sleep anywhere from a few to several hours.  When I wake up the next time, I will realize how very sore I am; especially in my arms, legs, back and neck.  It will take a couple of days for me to be able to walk normally and without pain.  It will probably also take a few days for me to be able to speak clearly, swallow comfortably and chew solid foods (I do a number on the inside of my mouth during a seizure - it's not fun).

Over the years, I have noticed a type of depression that occurs after a seizure.  It usually begins the next day after a seizure; and it hits hard - and always unexpected . . . until I remember that this is "normal" for after a seizure.  Ick.  I have to fight very diligently against the depression.  I can usually come out of it within a day or two; but going through the depression itself can feel almost staggering. 

I attribute the depression to two things:  (1) I believe that the majority of the depression is chemical in nature.  Afterall, a seizure is simply a chemical misfiring within the brain.  It stands to reason, then, that the chemical misfiring would cause a chemical upheaval and commotion, depression-wise.  (2) I'm sure that a small fraction of the depression is emotional in nature.  In all honesty, I abhor seizures.  There's nothing at all that I like about them; and in the days following a seizure where I am still trying to overcome all of the after-effects, it can get a bit daunting and overwhelming.  But.  As much as I abhor seizure, I loathe pity-parties even more  . . . and especially so when I'm the hostess of such a blowout.  I simply do not see any value at all in pity-parties; I'd much rather focus on the vast number of things for which I can express gratitude . . . and if you know me well, then you know that I also like to encourage people to do the same in their own lives.  Living a grateful life is much more meaningful and abundant than living an ungrateful life.  There ya go.

I thought when I started this blog post that it would be one post and that would be that.  But, alas . . . that will not be the case.

My next blog entry will deal specifically with how people have responded to me, seizure-wise  . . . and likewise, my general, thoughts, feelings and outlooks to such responses.  My hope is that I will be able to educate, explain and even encourage.

Thanks for reading! 
And, as always, your comments and/or questions are certainly welcomed and appreciated.

Y'all be blessed,

Monday, July 1, 2013

The Living Years

"I wasn't there that morning when my father passed away
I didn't get to tell him all the things I had to say."
                    (from, "The Living Years", Mike + The Mechanics)

Last week brought the 23rd anniversary of my father's death. 

I remember that I was at work when I got the news.  Suddenly, I was left to make decisions that I had never really seriously considered prior to that.  Funeral arrangements had to be made, along with other tasks that usually follows the death of a loved one.  I was 26.  In light of the responsibilities that I encountered at that time, that seems so young to me now - such a long time ago; and in other ways, almost as if it were yesterday.  Time's a funny thing, doncha know.

As the song says, I didn't get to tell my dad all the things I had to say to him.

BUT.  The blessing that will forever be a blessing is that we had started down that path of trying to understand each other.  We both had made conscious, determined efforts to come together again; and we had begun that journey about a year prior to his death.  I've always recgonized this as such a tremendous blessing.  In fact, if I may . . . while the coroner, the police and I were in the house with Dad, with neigbors milling around in the yard, I remember silently thanking Our Lord that Dad and I had mended our relationship with each other before he died.

My mother had died 16 years prior to my dad's death.  I was 10.  One very poignant memory for me surrounding that time was, while still in church at my mother's funeral mass, the priest leaned over to say something to me as I sat in the pew.  He whispered to me that it was ok to cry; that I didn't have to hold the tears in.  It was then that I quickly learned that people were expecting me to be sad.  But.  I wasn't sad.  I was worried for my father.  Even though he was publicly putting on a brave, stoic face, his grief was so very evident to me.  But, for me personally, I felt no grief, no sadness; only relief.  Finally, her abuse towards me had come to an end; she would never be able to hurt me again.

So many life-shaping events happened in the time frame between both of my parents' deaths; too much to even try to relate here in this one particular blog post.

Both of my parents were alcoholics.  Drinking simply was something that had always been around me; even from my earliest memories.  I don't know this for certain; but I suspect that they were both heavy drinkers even before they first met . . . which, was about 15-18 years prior to when I came along (they were actually my grandparents; they adopted me when I was an infant).

While I was growing up, they were "functioning alcoholics"; I imagine that no one really ever suspected the amount of alcohol being consumed at our house.  And speaking of the house, we lived in a nice middle class house, out in the country.  The bills were paid, the clothes were clean, the house was tidy, there was food in the fridge, two vehicles in the driveway and always a dog playing in the yard, along with chickens, rabbits, a goat and a garden.  Who could have known that things weren't really as they appeared?

After my mother died, Dad and I were left with each other.  Neither one of us did very well in that regard.  He became more and more immersed in the bottle, and I responded to that in myriad ways; none of them being very good choices, some of them being extremely unwise. 

We both were living reactionary lives.  Even my mother had lived a reactionary life.  Growing up being abused herself, she then became the abuser.  Children live what they learn.  This can be good or not.  Regarding the not so good, when left unexamined, the children then grow up to repeat what they learned as a child.

On the other side of things, my father had a long, successful military career.  He was a fighter pilot in 3 wars (WWII, Korea & Vietanam) and had also been decorated.  He retired from the Navy as Lieutenant Commander.    After he retired, he continued to teach flight training to new, up-and-coming Naval pilots.

I also know that one of the reasons why he chose to drink was to drown out the horrors of those wars.  The dichotomy of it all.

Our own relationship with each was also such a paradox.  During my teenage years, he and I had a very tumultuous relationship with each other; and it truly is a wonder that we hung in there with each other.  But.  The one thing I always knew about my dad was that he would never physically hurt me; and for me, that was a rarity.

Earlier, above, I alluded to the importance of living an examined life.  When I entered my 20's, I knew I was seriously in need of some very intense life scrutiny on my part.  I asked my dad to pay for counseling sessions, which he did.  Actually, I very sanctimoniously demanded that he foot the counseling bills, and also sharply accused him that he was one of the reasons why I needed counseling in the first place..  Sigh.  The arrogance of it all.  While I spoke the truth, it was nowhere near kind nor gracious.

But.  That was the beginning of our being able to come together, to forgive each other and to realize that we truly did love each other.

About a year prior to his death, I asked Dad to come to one of the counseling appointments with me.  It was then and there that I told him of the physical abuse from my mother and from various other people as well.  It was then that I also revealed the sexual abuse I had endured as a toddler from "trusted" male babysitters.

And.  He believed me.
While everything I told him was true, I still wasn't certain he would be willing to accept it as being true.  But, he did.  I don't think I'll ever be able to express just exactly what that meant to me.

"I wasn't there that morning when my father passed away

I didn't get to tell him all the things I had to say."

I told my dad many things while he was alive.  Boy, did he get an earful - and then some.  He heard my anger and my disgust.  He heard my disrespect and my vehemence.

Thankfully, later on (during the year before he died) he also heard how much I loved him and how very thankful I was that he never gave up on me. 

My mother was, in reality, my maternal grandmother; but Dad and I weren't even blood relatives. He was actually my step grandfather - my maternal grandmother's second husband. He adopted me, he raised me . . . AND he loved me - as his very own. And when things got tough between us, he was still my dad.

What I wish I would have also told Dad was how proud I was of him; flaws and all.  I never told him that.  I can only hope that Our Lord conveyed it to him before he died. 

That year before he died . . . there was much reconcilliation and forgiveness between the two of us.  1989 is truly one of my most cherished years; it was the year that Dad and I started really reaching out to each other again.

And, just to let y'all know, I have also been able to forgive not only my mother but all the other people who had hurt me in one way or another when I was growing up.  How can I not forgive them?  For you see, I, they, all of us . . . we all make mistakes; sometimes very grievious ones at that.  But.  When we look beyond the surface and try to truly see someone, we often learn so very much.  To hold onto bitterness and hurt does no one any good; not them and certainly not us.  Forgiveness, on the other hand, can open doors to tremendous peace, joy and love; truly it can.

Thanks for reading y'all;,

p.s.  - I hadn't planned on writing about Dad's death anniversary this year - life truly is for the living, afterall.  I do automatically remember the date; it's just part of who I am . . . but I remember with a happy heart, not a sad one.

While zooming through YouTube this morning, I came upon, "The Living Years".  The year that Dad died, this song was burning up the radio waves.  It soon became intricately connected with Dad's death . . . to this day, the two are one.  It also became a wonderful "safe place" for me while grieving and healing from his passing. 

Please listen to the words of this song; they are so very powerful and can be applied to any relationship.

Y'all be most abundantly blessed!

"The Living Years" (Mike + The Mechanics)