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.
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!
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