Seized by Fear!

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I have recently realized that I am living the life I always wanted.  I am an author!  I am a good mother!  I just didn’t know it until now.  My disability has controlled so much of my life, I couldn’t see it.  Epilepsy has tinged my life with sorrow and fear.  I have felt disappointed in myself for a long time.  I don’t have a “job.”  I have found myself more or less homebound by illness and loss of my driver’s license.  I can’t go to work.  Don’t you think that I would if I could?  I’m smart, I’m educated, and I have a Bachelors’ Degree!  It would be so much easier if I could just go to work like the rest of the world.  But I’m not like the rest of the world.  I’m “differently abled.”

This has shackled me for so long.  I don’t like staying at home all the time, all the while seeming fine to much of the world.  I only seem sick and afraid to those who know me well.  Once, I wanted a career.  Then I started having seizures.  Have you ever had a seizure out in public?  It’s not fun, and I try desperately not too.   I am so afraid that someday, someone will put something in my mouth during a seizure during some misdirected attempt against myth.  I cannot swallow my tongue, but I can break my teeth.  I’d prefer that would not happen. 

The easiest way is to educate the people around me, and keep the rest of the world at arm’s length.  I don’t trust other people to understand and put my best interests at heart.  They might not believe I’m possessed or a werewolf, but I can still scare the crap out of people.  Plus they usually think I’m on drugs.  I get drug tested whenever I go to the hospital.  It’s always the first question, “What kind of drugs have you taken?”  None, my brain just exploded in an electrical storm, par for the course.  It happens just because I was tired or the moon was full; just because I was on my period or STRESSED OUT or for no reason at all.  And most people just don’t understand.

There are days that just feel like seizures about to happen.  I live in a barely controlled panic on those days, just in case.  I keep the curtains shut and don’t do anything dangerous.  The worst part about a seizure may not be what it does to you, but what you can do to yourself when you fall over or crash your car or fall into boiling water or a pool.  I live in fear of these things.  Especially on the days when I can feel that sick feeling wavering just on the verge of something horrifying in the back of my mind.  It is the most terrible feeling in the world.  It is a malignant feeling that something horrible might happen soon.  Or maybe something terrible has already happened, and I don’t know.  A loss of consciousness is a tricky thing, I don’t know if I’ve had a seizure.  And I have absolutely no control over it. Turn off the TV, stay off the computer, and don’t go outside.  Be careful.  At all times, I must be so very careful.  I am consumed by the fear of having a seizure.  I am seized with fear.

A person very close to me once laughed at me when I told him my neurologist wanted me to have brain surgery.  He laughed voraciously, “Are your seizures really that bad?”  I felt like he slapped me.  Our relationship has been permanently damaged.  I wish I wasn’t a petty person and that I could forgive him.  But I cannot.  Not yet anyway.  So many people, people I know and care for, believe me to be lazy, not sick.  I know, they all tell me as much.  Thanks so much for thinking me to be so much more healthy and competent that I am.  What an honor!

Maybe someday I will forgive them all for this prejudice.  Let’s call it what it is.  Because, let’s be honest, prejudice against disabled people still run high.  It’s still okay to think lowly of the disabled.  We Americans believe that we are a pull yourself up by your bootstraps country.  What’s wrong with you?  Everyone has the same opportunities.  Unless you are sick, then you’re fucked.  Not everyone starts at the same starting line.  Some people can’t even see the starting line.  Some of us need help.

I have LOST friends over The Affordable Care Act.  My cousin un-friended me on Facebook.  All because I believe that people with “pre-existing conditions” should be allow adequate and affordable health care. Do you want to know how many seizures I had when I was uninsured?  Hundreds.  If I could have afforded my meds, I might not have had any.

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17 Comments

Filed under Living w/ Epilepsy

17 responses to “Seized by Fear!

  1. Nikki

    Although we don’t agree about the affordable health care plan. I can’t believe you have lost people over an opinion! As I’ve before, for me I’m just afraid we won’t have access to the care our doctors decide we need. Instead a government official will decide, however living with a disabled person I do think we need to re-write pre-existing conditions regulations. To just be disregarded is in excusable. It’s sad the lack of understanding people have……

  2. Hi it’s me again… unfortunately people who haven’t lived with a devastating, chronic, life-threatening condition for themselves or their children, haven’t a clue how our messed-up insurance system really works. My lovely United Health Care wouldn’t pay for my son’s Trileptal at about $1K per month; never mind that without it he’d wind up in status epilepticus and respiratory failure… silly to lose friends over this but I totally get it.

    For whatever it’s worth FWIW, my son Mikey had brain surgery and (pray, knock on wood, etc.) we just hit the 2 year mark without any seizures. He was an excellent candidate for surgery as his seizures came (mostly) from a well defined focal point in his brain. It’s a scary thought, but honestly in our case it has been a real life saver. It really depends though on the cause of the seizures… I hope things get better for you, I really do.

  3. Thank you for reading! Best wishes for your son. I will never understand how insurance companies will refuse PROVEN LIFE SUSTAINING MEDS. I was once told by my insurance company to just go ahead and have a seizure and go to the ER if I needed my meds so bad. 😦

  4. I know, it’s crazy. I hope things get better for you.

  5. Megan

    I stumbled upon this link when I was looking through the epilepsy.com forums. My brother has epilepsy and I try to empathize with his struggles, but the truth is nobody can really appreciate what he or anybody else with such conditions experience. I tend to get swept up with petty everyday annoyances and forget the big picture. My experience with my brother has made me passionate about being a doctor and trying to help people. I’ve seen what my brother has gone through, and nobody deserves to live that kind of life. The negative stigma that seems to surround epilepsy is ridiculous, it prevents people from understanding and therefore appreciating how it impacts the lives of those who suffer.
    Thank you for this post, it gives insight into the daily life of epilepsy. It’s not easy and it never will be, but you deserve so much respect for fighting through. Please don’t let people who don’t understand your battles undermine you, their ignorance prevents them from feeling true compassion.

  6. Thanks for reading and commenting! I wish the best to your brother. Getting messages like yours keeps me writing.

  7. FCMedina

    Sending you a big hug! No one can truly understand unless they live it. The fear, stress, depression and unforgivable humiliation. I’m blessed with a job, health insurance and now a husband who loves and protects me when I’m down…but all these wonderful things still don’t wipe away my untimely tears of feeling like a drug-addicted fool. Thank you for sharing.

  8. Stacey

    Your words were right on the point. While reading your post it was like reading my bio. I don’t like being title Disable when I know that I am Able in different areas in my life. One thing I can say is that I have been blessed. I have been at my lowest…no income…no medicines but I still found myself on top. I have my good days and bad days because I am not sure whether it will be a ‘seizure day’ or a ‘no seizure day’. What I do know is that I am here for a reason…one is to be a mother while facing this health challenge. This shows my son that all things are possible through Christ and that I am an overcomer. Your post does the very same and show others that we are not there alone.

  9. It’s hard for me to type this but I must respond. Forgive the typos. You write this like its my life. Except there’s no way I could have a child I applause you your husband must be amazing as must you. I have dogs. I think I would be too hard on myself. I have been too hard on myself. However, after reading your blog, it’s almost as if I’m not alone. Now, mind you I’ve had to re read it over and over. But over the last few days I’ve done just that. I’ve even sent it to my parents and my partner. Because right now I’m just not in a good place. It sooooo frustrating. But you know this. Don’t you?

  10. Forgive my typos there may be a few. Doc just increased my keppra ! I just want to say I love how you write this I feel like I know you. I sent the link to my family and friends on Facebook because I have was diagnosed at 14 and doctors say am LUCKY to know why I have epilepsy. I have scars on my brain.
    I have so much electrical shit going on in my brain I feel like I could charge my I phone!!! 😜 I understand the way you break down your seizures. It’s I’ve just been on so many drugs for so long most time during the day I don’t make as much since as you. I try to write it down for myself all day Casey do this. Do that. Fed dogs. Check.
    Somedays it’s hard to feed myself. Honestly.
    But, for the last few days I’ve been re reading your blog. Because like you my memory is pretty bad. I tell people my life is like 50 first dates with drew Barry Moore. Lol it’s not THAT bad!! I don’t feel sorry for myself I’ve been doing this too long I’m 38 years old. At this point I get frustrated, depressed and angry. Then I get over it. My point in telling you is, reading your blog over and over us really making me feel like there are others out there like me. Or atleast one.

  11. I’m so glad that my blog spoke to you! WE are NOT alone!!

  12. Terpsichore Barnett

    Kat,

    I just stumbled on your article because I was doing an image search for gray-purple foggy pics with trees; what serendipity! I don’t seek out reading on disability, but every time I see or hear something on the topic, I think I should. Because when I read words similar to yours, it reminds me once again that I’m not crazy. That I really AM shunned due to my invisible diagnosis of severe continuous pain of unknown origins. That many people really don’t believe me, or automatically assume I am taking a victim stance.
    Most of all, that losing almost all of my friends, including the close ones over the last 16 years, has a HECK of a lot to do with my disability, the ensuing “inconvenience” to others, and the bothersome “accommodations” I need.
    The good news when I read something as well-written as your piece is that I’m so glad my social isolation isn’t my fault. The bad news, as you said, is that the prejudices are REAL. After all this time, I haven’t learned how to be a member of a group that is routinely discriminated against or discounted. It makes it very hard to move forward, continuing to make new friends, when I have realistic fear that this person, too, will criticize my inability to get well or just silently disappear, as so many others have.
    I know there’s hope somehow, and somehow ways to find people who won’t reject me on the basis of my illness, but I don’t know how to get there, what roads to walk down, which epiphanies I need to learn from. I ‘m NOT asking you to answer these questions. I just feel rarely safe in expressing what I truly feel on this subject. Thank you for helping to make that possible.
    I am wishing you all the goodness that you deserve, and I believe you are doing a *very* real job as a writer (not to mention a mom)! I also believe that we are all so much more than the sum of what we DO. Best of luck to you.

    ((Hugs)),
    Terpsichore Barnett

  13. Thanks so much. I’m glad that my piece spoke to you. Your response moved me. Those of us with invisible diseases need to stick together! Thanks again.

  14. A Critic

    I love your blog…but with all due respect I disagree re:

    “I believe that people with “pre-existing conditions” should be allow adequate and affordable health care. ”

    I’m sorry but there just isn’t enough money to pay for it all. Not even if we stopped wasting so much on wars and other stupid things. And even if there was enough money to pay for this – the worst way to go about it would be the ACA. Socialism would be far more effective than what awaits us – and I’m a staunch opponent of socialism.

    I’ll still read your blog though!

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