No Bright Side???

This is what my kid posted over night on Facebook…

Epilepsy has no bright side. Every seizure makes getting permit and license further away and leaves my tounge sore and bruissed. Maybe even vittoria and robert langdon have easier lives then me and there trying to stop the illuminati.

Now she has me thinking (and searching) about what any bright side might be.  To be honest… right now… I can’t see a huge bright side to having epilepsy (or whatever the politically correct word of the week is).

Of course, until she was diagnosed and we started on this little adventure, I didn’t think there was any real bright side to my having RA, either… and then I started to realize that at least to a very small degree I could relate to her having a chronic condition and having to take pills that make her feel crappy.

Try as I might… I can’t see any real bright side that I can show her right now.

I know that because of her situation she has a little different view of things.  She views the world through slightly different eyes.  But how do I make any of this a positive thing for her?  Will there ever be anything to see as bright?

the eternal optimist continues to try to find something…


4 Comments (+add yours?)

  1. kaitlinscauze
    Aug 15, 2010 @ 06:45:47

    Amandya is right, there is no bright side to having seizures. NONE! Seizures suck in many ways. It sounds like Amandya is going through the “stages of grief”, which is a normal reaction to any life altering change as I’m sure you are aware. I would bet that once Amandya hits 100% acceptance she is going to be a force to be reckoned with as far as becoming a voice for epilepsy awareness. She seems like she has the personality to overcome anything and to become a stronger person because of it. For the record, I think you both are doing fine- isn’t this only your 7th month into this journey?


  2. alicorndreams
    Aug 15, 2010 @ 07:12:38

    Yeah, she is going through her grieving… and most days she is doing better than she was. Last night she was having a real down kind of night… she cleaned out her closet of all of her ROTC stuff. She decided that she was dropping it this year and that is adding to her grief, too. She wants to find herself again and she isn’t really doing that in ROTC but it has defined her almost exclusively for the last couple years. Now she is finding growing hard, too.
    The last few weeks have shown me how much she is growing, sometimes despite herself. It is hard to see my baby growing up but she is growing into such a wonderful young woman.
    Yeah, we are “just” 7 months into this adventure. I know that it is a long journey and that as she comes to term with everything she will be a force to contend with.
    This last seizure took everyone off guard. And it was an atypical (for her) seizure… usually her jaws don’t clench to this degree. Usually her tonic part is limbs stiff and straight, this time it was more fetal position…
    I got the call when I was at work and I was admonished (later) that I need to be strong her her. It was like getting kicked… I was foolish enough to believe that 68 days might mean a trend and we were actually going to be able to get the driver’s license permit by first of the year.
    When my kids are around to see me, I’m strong for them. When I’m driving home from work to be there for her, I’m crying my heart out. When I make sure that she is “okay”… then I’m a total softy. She had Panda Express and frozen yogurt for dinner. She ate almost all of it, too… which she usually doesn’t eat much at all after a seizure.
    We are getting there.
    Thanks for the pep talk Kim!


  3. dyspatient
    Sep 05, 2010 @ 16:06:51

    Nope, this really does fully suck. My heart goes out to her and to you. You’re being supportive and you’re getting her help and treatment and more support when she (and you!) need it and that is good. So much more than some parents do, I know it doesn’t seem like much but it is. I speak from a bit of experience. As a kid, I passed out. As a teen, it happened more often. I had convulsions when I passed out which were diagnosed as “seizures” although no one was able to confirm on an EEG that I was having a seizure. So, no learners permit or drivers license for me. Nope. And it felt like every stinking time I got close to going my 6 months or whatever it was (it’s been so long now and I gave up and stopped counting, I think it was 6 months) without an episode, I would have one. And then the whole wait and wait and wait would start all over again. In my case, it turned out to be hypoglycemia that was not diagnosed for about 15 years – yes, that’s right not until I was in my 30s. I self treated as if I were hypoglycemic around 20 and was finally able to get my license. My parents were useless during the entire period, they took me to doctors’ appointments but that was about it. So believe me when I say, what you’re doing is good.

    Ok, I’m reaching but here’s some sort of bright-ish sides. I got really really fit from walking a lot. I got to know the T really well (I lived outside of Boston). I did a lot of writing while I was waiting for or riding on various buses and trains. I learned how to budget my transportation time in a way that has stood me well into adulthood – I am nearly always early or on time for everything now because I leave with plenty of time to get where I’m going.


  4. dyspatient
    Sep 06, 2010 @ 09:12:01

    Oh I should add, I didn’t get my license until I was 22. It took a looong time – but boy, did I feel like I earned that thing.


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