Overcoming obstacles with Optimism

Archive for the ‘Epilepsy’ Category

The Devil Didn’t Make Me Do It

Sex, religion and politics are taboo subjects in our culture.  We all arrive to our beliefs through different paths.  Regardless of what I think, I try hard to respect all opinions that are shared with me.  I agree with some.  I disagree with others.  I know everyone draws conclusions from their different experiences.  Respect that.  I will respect you.  But don’t hurt me and/or others.

Picture courtesy of Morgue Files

Recently, I was attending a church.  The lesson of the week was Mark 9.  Within this, there is a verse that deals with a boy falling to the ground having what could be interpreted as a seizure.  The pastor at this church taught the son was having seizures and Jesus rescued him by purging the evil spirits from his body.  After church, I went up and asked this pastor to further define his view of epilepsy and religion.  He said “not all seizures, but those not medically diagnosable, could be fallen angels or evil spirits taking over the body of people who have not been born again.”  ….But, he did not feel all seizures were the work of the devil.

I kept quiet after his explanation.  I needed time to really think about his comments before I reacted emotionally rather than respond intelligently.  The following week I went up again after the service to continue our conversation.  My hope for an unemotional discussion was quickly dashed.  I asked questions about the progression of medical knowledge and miracles of healing beyond purging of the devil.  After all, the blind man saw again and the lame man walked.  I asked about young children who had seizures.  He said the evil spirits could possess them too if they were living in a home without two believers.

I explained to the pastor beliefs like this were not only discouraging but potentially harmful.  On different occasions, I have been invited to churches because they felt they would heal me from these “fallen angels”.  It never worked.  There have been children who have even died because of the extreme religious view seizures can be healed by laying of hands or exorcism.  I also explained to this man for the first ten years I was a child with seizures not medically diagnosed, I was not possessed because my parents were nonbelievers.  While an adult, we did find the medical reason, and no evil spirits fled from my body.  When the neurosurgeon cut open my skull and removed the piece of brain, his medical reports did not claim a swoosh of air passed him because fallen angels or a possession of the devil exited my damaged brain.

I hope this message is passed on by many and some with doubts are able to understand: Seizures are a medical, not religious, condition.

Please Help Me

Next time you go to the store, may I ask you to get extra milk?  May I ask you to help me find a solution of how to walk home from the grocery store with fresh fruit and meat not spoiling in the 100F/37C+ degree summer weather?  I wanted to go to church last spring.  Maybe you could help me find a way to get there.  If my daughter were to run a fever for five days,  I am not sure how I would get her to the doctor.  School will be out in an hour.  It is chilly and pouring rain outside.  Don’t you think these umbrellas will be enough to keep my children dry and, at least slightly, protected from the damp chill?

180 days.  One hundred eighty.  It is not a random number; rather, it is a magical number in the eye of the drivers’ licensing department in most states.  A person can have a seizure and somehow in six months they will be healthy enough to drive.  Six months is a very long time.  An individual can lose consciousness for any number of medical reasons.  After 180 days of good health, magically they are fit enough to drive.

If your car has to go in for repairs, do you feel lost?  I recently overheard one mother tell our school’s office her child would not be there all week due to their family being short one car.  She was nearly crying from frustration.  The bus system could not come and pick her son up.  I knew one man that was very angry his car was in the garage for three days.  He would be forced to take vacation time.  He did not have a lot saved up.  I knew one mom who was worried about how she would adequately take care of her children when she would need to walk so far to get groceries.  I knew one mom that spent a summer asking those questions above.  I am that mom.

If you know someone who never takes their car out anymore ask if they need a ride.  There are more reasons than just epilepsy that will leave people longing for the freedom a car can provide.  I know last time I lost my license, it was one of the most difficult times I had of continuing a sense of normalcy for my family.  My husband was away on a long work trip.  It was only my daughters and me.  I was told on several occasions, “Next time I go to the store I will let you know.  You can ride along.”  I would see these same people, having forgotten to invite me, come home a few days later with a trunk full of groceries.  I would remember the Sunday bake sale our church recently had for families in need, but then find out people were too busy during the week to take me to the doctor.  One lady asked again and again if I needed to go out and get anything.  I finally told her yes.  When I asked for help, she told me she did not have time to go out and did not like that store.  But, she encouraged, I should ask again next week and she’ll see if her schedule frees up.  That crushed me after gathering courage to admit I needed help.

When you lose your right to drive, you lose freedoms most likely you’ve never thought about before.  You give up a level of independence you always took for granted.  I even gave up simple things such as a speaking group I attended weekly.  It was a pleasant outing to go and see these familiar people.  It was fun to practice and utilize my passion for public speaking.  Only one person offered me transportation.  This man used the weekly outing as his social hour, too.  I could not take this away from him.  He would need to rush me home to pick up my kids from school.  We lost my kids’ opportunity to play community sports because games were not always close to our home, but sometimes miles and miles away.  I lost so much during those months.  I gained little besides strong legs, a trimmer body and much more compassion for those that are never again able to drive.

So this, this, is what I am asking you to help me with: If you know someone that cannot drive, don’t wait and make them ask you for help.  The greatest gift a neighbor gave to me was the frequent call where she said, “I am going to Target. Do you want to ride along with me?”  I always tell people not to ask if they don’t want company because I will never decline an outing.  We, no individual is immune to this, get busy in our own lives.  Remember though those around you unable to be busy.  People need your help.  Whether it is a call letting them know you can get them a container of milk or a ride to a meeting, it will mean more than you can ever imagine.  Think back to the time when you had to take your car in for repairs.  Think about what you would miss if you could not get a rental to use for a week.  Imagine it was you who was unable to find transportation for months at a time.  I would be happy to offer you help.  Right now though, I am asking you to offer this same help to someone else in need of your kindness.

Supporting Team Aidan as They Support Epilepsy Awareness

Heather has been putting posts out all month to help raise awareness of epilepsy. Enjoy this guest article I wrote. Please, visit her site. Take time to read through all of the exceptional, emotional and educational posts she is sharing with us. Thank you Team Aidan.

Team Aidan

This is another guest post in the series, “Faces of Epilepsy.” I’m grateful to Tara for giving us the perspective of being an adult with Epilepsy. She writes here and her posts reflect her hope-filled and joyful attitude.

I am a mother of two beautiful children.
I am filled with hope, laughter and self-esteem.
I am an author, a motivational speaker, a community volunteer and best yet… a full-time mom.
I move frequently and travel often.
I am a Navy wife; therefore, I’m a single mom while my husband’s at sea.
I am independent in life yet endlessly seek the company of others.

My life was as “normal” as is the life of any pre-teen. I started having odd “spells” when I was in 8th grade. After brief episodes, I would tap my face and count my fingers; I would become very confused and very tired…

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Perspective of An Epileptic Growing Up

Middle School

                “I don’t know what’s wrong.  I just feel weird.  It just feels like I am in a commercial I have seen before. I know what’s going on around me.  I know everyone around me.  I have seen them all before.  I just can’t join into their conversations.  I just feel different, and then I count my fingers and pat my face.  Then I am tired.”

“An EEG…with all those cords???  You cannot be serious!  I can’t wear that to school!  Everyone’s going to laugh at me!  24 hours?  But I don’t want to.  Fine!  But, everyone is going to laugh and make fun of me.”

High School

                “Yeah, they’re still happening.  But please, don’t tell anyone.  Everyone already thinks I am weird when they see me count my fingers.”

“I don’t understand.  I felt fine, went to bed, and woke up in the doctor’s office.  How did I get there?  What’s going on with me?  A seizure….  No way!  But aren’t those where people just flop around.  I wasn’t doing that.  Was I???”

“What do you mean I can’t drive?  I just got my license!  Six months?  NO WAY!!  That is so not fair!  Why is this happening?”

College Life

                “What do you mean I can’t sleep in a loft bed in a dorm?  Seriously, I might have a seizure and fall out?  Stop worrying about me.  I mean, I am fine.  It’s no big deal.  I don’t even really notice it until the morning.”

“I know all these last medicines aren’t doing anything for me.  All right, fine but, this one makes me feel horrible.  I feel so groggy.  I feel sick to my stomach.  I feel like I can’t help but get fat.  Come on, why can’t we find one that works!  Why do you make me take medicine that totally is not helping?  They just make me feel worse.”

Early Adulthood

                “Okay, fine I had another seizure last night, but they aren’t that bad.  I just wake up totally sore.  No big deal.  Really.”

“Oh, dear God….  That was ME in this video tape?  Was that really me having a seizure?  No wonder I am so sore.  No wonder everyone has always been so scared.  Wow, I had no idea.  Gosh that looks horrible!”

“What are these red spots around my eyes?  Broken capillaries?  I had always thought I was so lucky having the seizures at night.  Now you are telling me I could have died from my own saliva?  I had no clue.  My seizures are getting worse I know.  Really seizures can kill a person?  Me?  Wow.  Okay, even I am a little scared now.”

“There is no way I am in Iowa!  I went to sleep in Virginia.  Oh my gosh that older girl is so cute!  Who is she?  What?  Seriously!!  She is mine?  How?  What has happened?  Status epilepticus?  Okay, please tell me again?  How did I get here?  How do seizures wipe away memories?”

“No medicine works.  I have a period of amnesia.  Now my short term memory is about gone.  I have to leave notes of whether or not I stepped outside to get the mail or I ran the dishwasher.  I just…I know it’s time.  I need the epilepsy surgery.  No medicine has worked.  I’ll be fine.  Seizures could quite possibly take my life.  The surgery could save it.”

“I remember the petit mal while in surgery.  I remember knowing I was going to have the tonic-clonic.  I remember the seizures. I remember knowing everything was not going to be all right.  I remember the surgery.  A stroke???”

Recent Years

                “The stroke was rough, but well worth it.  No more seizures!  Finally, what more could I want!?!”

Eight years, and no seizures.  I haven’t felt this good completely free of medicines since I was young.  Oh, I feel great!  I am so thankful!”

“Last thing I remember was I was sitting outside on the chair. Are my kids okay?  How and why did my seizures come back?  What can we do?”

“I can’t drive again???  What am I going to do?  How can I get my groceries?  How can I get my kids to the doctors if they get sick????  No one from church is able to take me to the appointments?  Really??  Most of my neighbors forget to ask me before they go to the store.  I guess I will have to ask them again.  I lost my license.  I have lost my independence. I can’t drive.  Six months.”

“Vimpat is amazing!  I have not felt any side effects.  I guess that was a benefit to being medicine free for so long.  They have had time to develop new anti-epilepsy drugs.”

“No, really I am doing great.  Besides that one blip in April, the seizures seem to be gone.  Of course I am still scared.  Nearly nine years seizure free.  Now they are back.  Seizures always have been my disease of waiting.  I will be okay though.  I always am.”

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