Tag Archives: Epilepsy

You Could Have Just 2….

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YOU COULD HAVE JUST…

Remember in your youth the phrase “Think before you speak”
was told over and over by the adults around you? It always amazed me how some
adults could speak out both sides of their mouths. At what point did we lose
our willingness to engage our brain before inserting our foot? Was it when we
realized there was no longer a consequence for our remarks or was it when we
learned the first amendment? Regardless of the reason, toying with someone life
in words should have consequences.
Being diagnosed with epilepsy this concept was evident even
to an eleven year old. Listening to doctors ask questions that would leave even
the most hardened adult confused and belittled. No medical reason for the
epilepsy like brain trauma or birth defect questions were asked like “could you
conjure one (a seizure) up for me?” “You could be wearing your ponytail too
tight”, “Are you sure you aren’t just imagining this?”  Twenty-two years of being treated like it was
all in my head until one sentence was uttered, 70 to 80% of all seizures have
no known cause. What? I’m a normal oddity? That one sentence if uttered at any
point 20 years earlier would have changed so much.
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Then later in life, after the birth of a beautiful baby boy,
the request for birth control was made. For some reason the myths of women on
neurological medications would either have horrible birth defect consequences or
women on these meds tend to forget to take their birth control ran rampant
through the medical society. The practice of tying tubes or tubligation would
be my only option. I was sterilized because of my mythical inability to
remember to take my birth control.
Adults and physicians were not the only ones to mentally and
emotionally wrestle with, there is another stumbling block that for most of us
would be the last place we would encounter little or no understanding.

From my catechism teachings I don’t remember the heroes and
heroines of the bible being submissive. They were aggressive and empowered, why
should I have been any different?

“You could have just” can be a very powerful statement when
used the right way. The next time you see a child or a woman being abused and
stand by and do nothing. Look into their eyes and see “you could have just held
me or gotten me out; you could have just called someone in my time in need”.

The next time you are fighting over truths and half-truths,
look into their eyes and see “you could have just told me up front I can take
it, you could have just been braver than me this time”.

The next time you pretend to understand a person’s anguish,
step back one minute and take a look and you will see, “you could have just
been there wholly instead of pretending to know, you could have just silently
listened as my world fell apart – opinions were not needed just then”.

So please, if you get anything out of this, finish this
sentence before you change the life of a child, a victim, a friend, a
co-worker, patient, a parishioner, or anyone for that matter.

You could have just…..just what? Think about that the next
time you speak a half truth or your belief, is it better for you or the person
receiving it?

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My Fish Bowl

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it’s been a little side note for 30 years or so,

a card in my wallet, a bracelet, necklace, of whom to call or where to go

it’s been like a goldfish i must feed twice a day

but something replaced my goldfish and put a piranha there to play

it’s not a subtle entry but a steady barrage of hits

i didn’t see it coming, hear the splash, feel the nips

it’s a cruel evil thing with ferocious teeth and eye

it’s done after eight attacks – on the bed – lifeless there i lie

my family came – rescued me never seeing an attack like this

my husband asking for my return but i was lost in the abyss

i don’t remember that day – told only in story form

i don’t recall the after – those are lost forgotten torn

pieces like a patchwork quilt with greens and blues and reds

pieces mostly blacks and grays held together by a single common thread

i had accepted my goldfish, named it floppy, changed its water, fed it every day

where this evil finned thing did come from – why now, why change

i fear this ugly animal – do not wish to call it mine

but this nameless tenant of my fish bowl thinks i am it’s and will be here for some time

but I am back to feeding them twice a day,

regardless of its intentions and its need to get its way,

goldfish and piranha are separate now and defined,

floppy is doing well, its sharped tooth devil that is still being wined and dined.

and on with life we go again, a card in my wallet, a necklace around my neck,

its once again a side note, but making sure the world around me knows the side-affect.

SEIZURE, SEIZURE, Someone had a SEIZURE!!!

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Call the docs, Call the Bishops, Call the Warlocks! Call the the the the

…. for Petro’s sake take a pill.

If it is the first or second one then call an ambulance…maybe… if there is someone on hand that knows how to take care of someone that has a seizure than go that route.

People with seizures at one time were considered gods/high priests/lords then something went wrong…. and for the rest of you…I will let all of you look that painful story up.

It has taken since then, for us to pull ourselves out of dark pits, insane asylums, state hospitals, and more. And now, for pigskins sake, we have a MAN, a REAL MAN, a FOOTBALL COACH, having seizures.

I wonder how many other of the 60,000 epileptics in Minnesota had a seizure on Saturday. The MOMs, the DADs, the CHILDREN, the COLLEGE KIDS (like Representative Abeler who unfortunately lost his to SUDEP), the STOREKEEPERS, the BANKERS, the GOVERNMENT WORKERS, just to name few.

The difference between us and Coach is the stupid news keeps reporting it like its some kind of awful thing. Of those 60,000 epileptics we don’t have to report it to you stupid sports reporters every time it happens.

A seizure is normal, just like low sugar is in diabetes, just like high blood pressure, just like migraines, just like a heart attack, and can be dealt with medically or sometimes surgically. There are some seizures that are not easy to control. But those like Coach’s and mine are controlled by medication, I have mine for 34 years, had a family, worked, and more.

If the College would ignore the fans ignorant and bigoted outbursts and ranting, then all will go away. If the news will quit reporting a normal life situation, or start reporting it as a normal life situation maybe the world would treat at as normal life situation.

Over and Out

ArdentMeld

PS.

Okay, explanation simple for your sports people to understand (I’m a sports person too I just don’t let it take up every aspect of my life)

A seizure is kinda like when a breaker goes out in your house’s breaker box during a game and the t.v., stereo, and cable go out in the living room and you have to down to the basement and flip the switch and guess what, everything is back on and alright again.

That’s what’s goes on in an epileptic’s head, so….the more the paper keeps reporting it, the more we are going to stress about it, the more we are going keep crappy floppy all over the place, the more you idiots are gonna complain.

SO STOP IT!!!

Thanks

Wait and See…

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Dependent…..Constraint…..Useless…..

Those are just three of the many words I think of as I contemplate my next step in getting my epilepsy under control.

I have been through this barrage, mirage, pharmaceutical garage, so many times before that what makes it different now?

Older? Bolder? or the fact that my I DON’T GIVE A FUCK button is beginning to smolder?

Thirty four years of hiding, biding, taking the chiding, has come down to the last straw?

But if I start this mission neurology, will I be stuck once again in hypothology? and be turned loose with no apology.

And during this wonderous hypothetical drudgery – I once again will find myself  suppressed, it all pointless, and much much duress.

I preach many times that one cannot go forward if one doesn’t learn from the past, stop living in the past, forgive the past.

So what is it that makes me unwilling to learn, churn, and burn?

I guess we will have to wait and see where this trail goes…… back to the woods or forward to my pros…

November is Epilepsy Awareness Month

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Short Circuit

As an eleven-year old girl, the biggest
worries were getting homework done so I could play and having enough time to
play. In 1977 those worries would change, I was diagnosed with epilepsy.

Does anyone realize what the unknown
does to an eleven year old? When doctors, nurses, mom and dad, cannot put
anything tangible with word epilepsy? That the “big” people could give no real
explanation about why I had a short-circuit in my brain.

In that year, explanations were not
given for children’s’ differences, bullying was an everyday norm because “kids
will be kids” and we had to learn to toughen up. It was bad enough we were all
going through puberty and some of us didn’t get our parts fast enough or our
fuzzies fast enough. Then put a child’s disability, family’s income, religion,
whether they played the cool sport or cool band instrument on top of it?

For a child, friends mean everything, but with each
seizure a friend was lost. For those that think children are resilient or that
children are not tiny bigots, sorry you are wrong. By the time I was thru my
first quarter of sixth grade I had lost every friend I had. I was called
crappie floppy, retard, jerkin’, and freak-a-zoid. This name calling and banishment
was with me through 6th, 7th, and 8th
grades.  Moving up to high school was a
blessing. Two middle schools, mine and another came together at the high school
level. New faces that I could make friends with.

My friends in high school were all
from the other middle school. These kids were not predisposed to the
“freak-a-zoid”. In fact, many of them never found out I had seizures. That
became my biggest worry, who would be the first to find out I had a brain
gremlin. I was not worried about the latest fashions, newest rock groups,
gossip, or staying out late. Keeping my driver’s license and my friends was all
that was important at that time.

My fears would later change to
despair. My driver’s license and my attempt at normalcy were suspended. I had
several seizures and my doctor felt it necessary to take away my driver’s
license. Do you realize you are more likely to be killed or injured by a drunk
driver than an epileptic? Also, it is easier for a DUI driver to get behind the
wheel than an epileptic, epileptics have a conscience.

My freedom taken away, my epilepsy
worsening, I tried to commit suicide. What had happened to me? This invisible
time bomb inside me had gotten to me. It had no face and no outward
description. It disappears as fast as it comes. Without warning it rears its
ugly head as I fall into strangled blackness. When I awake to panicked faces
and yelling voices, a thick, gray fog blankets my brain. My body feels like
lead and I just want to sleep.

Every parent tells their child not to
be afraid of the monsters in the dark. I would have given anything for that
simple fear. Instead, I was in a continual wrestling match with the gargoyle in
my brain.

I made it through my suicide attempt
with the love and support of my family and friends. Most said my problems
weren’t big enough. Maybe they weren’t but then….

The medications used to control
seizures can be just as scary to a child. I think that doctors take only the
“common” side effects into consideration when they should realize that all side
effects are common and the reactions are not in your head.

One of the first anticonvulsants
drugs I was on turned me from a happy-go-lucky preteen into a temper tantrum
throwing, back talking, and almost evil little girl. My mother cried her heart
breaking as she told the doctor of the darkness in my eyes.

There are also the physical effects
they tell you about. A teen shouldn’t have to worry about liver or kidney
damage because of the medication. A teen should also not have to worry about
hair loss, severe weight gain, or facial hair. Come on, adolescence is tough
enough.

All I wanted to be concerned with
was dating, dances and dresses like any other girl. Instead of dreams of
parties and football games, I had nightmares of gremlins and gargoyles dancing
on my brain. But little did I know my brain gremlin was but a little pest
compared to the real monster I was about to conquer.

bullying, invisible disability, or domestic violence…… conquering one or all can be traumatic