Overcoming obstacles with Optimism

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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Comments on: "Perspective of An Epileptic Growing Up" (33)

  1. Oh my gosh, its almost parallel, parallel! Thank you! I am back in my “fear of waiting” again but atleast MN has a 3 mos waiting period…

    I haven’t had surgery, or other issues, but thank you for being one of the other “i will be ok” people out there….

    LOVE YA!

    • Three months… three months is still HUGE! I know the fear. I know the concern. But also know the celebration of here and now. I am glad you have today for holding off the disease and fear of waiting! Thank you so much for taking the time write your words. I am very grateful to hear from you!

      Tara

  2. Reblogged this on Ardentmeld's Blog and commented:
    connecting with others who are “finding strength to stand again”

    • I am honored you have reblogged this post. Thank you so very, very much. I hope others find a connection to this, and it can help non-epileptics discover a little bit about life with seizures.

  3. Your writing is amazing….You have a way of telling us your life and such a easy way…and then you are going through so many days that I am sure are so hard for you and your family…And then I know from reading a view of your earlier posts…You do believe and I know that Willow Tree is sooo strong in YOU….
    Hugs
    Jacqueline

    • Thank you Jacqueline. I believe we all have a willow tree within us. My view is- if I can educate some and inspire others rough days are more than worth it. Thanks for taking the time to stop by and leave a kind comment.

      Tara

  4. Maggie said:

    I cannot thank you enough for being so honest about your epilepsy journey. I share it. Much is the same, yet much is different. But we both live with limitations and understand how difficult a disorder it really is. Love the picture of you and your girls. It puts a personal face to your writing. Keep posting, please. I take strength from you.

    • Maggie,

      Thank you so much for your heart-felt words. It would be easier if everyone had the same story with epilepsy. Then the research might be able to progress faster. As it is now, every story slightly differs. It makes it interesting and offers hope when I hear others tell of the trials and successes they have had.

      Tara

  5. Wow – this is one of the most powerful, descriptives posts I’ve read on seizures. Isn’t it true that we feel different things at different stages of our lives. I’m wondering if you by chance got an email I sent you last week or if it may have ended up in a spam folder. I’m going to resend in case. Thanks Heather

    • Thank you Heather. Yes, sadly you had been spammed. I found it and replied just now.

      I am so glad you liked this post. I am really hoping to get it out to as many people as possible. I know – this is what most of us want in blogging world, right – but I think this is one of the best posts I have done to explain my experience with seizures first-hand.

      I always appreciate you stopping by. I love your future series idea. I can’t wait to read it!

      Tara

  6. Great post; rough post; a post with perspective. Thank you for sharing it! Your words in this post and others have helped me better understand what my son, Sam, has gone through during his life with seizures.

    I haven’t given an update for some time regarding Sam’s seizure situation. Things are very good on that front: he’s had no trouble at all since September 11th last year (which was one of the worst one’s he’s had). We’re very happy for him!

    You do a great service with the writing you do; please keep it up!

    • Thank you for your continuing support. It means a great deal to me. This is wonderful news about Sam! 🙂 I have been checking for updates on him. I am glad you let me know. Hopefully that last one will be his last forever! Fingers crossed and warm thoughts being sent his way.

      Thank you very much for stopping by.

      Tara

  7. Wow. So much positivity and inspiration in this post!

  8. You had me in tears! It felt like it was a glimpse into my daughter’s future in a way! Bless your heart! I hope they find a cure in our lifetime! From these lips to gods ears! I know they’re making greater strides towards newer and better medications and for that I’m greatful! Also, wanted to tell you, that’s a beautiful picture of you and your girls! xx

    • I carefully watch researchers and listen to their information of progress. I continue to have hope for a cure. If nothing else, at least their medication is making great strides of helping us.

      Thank you for you the compliment on our picture. That day contained a lot of happiness and stifled giggles. They were pretending to give me kisses but quickly changing to whisper (tickle) in my ears.

      Tara

  9. Hug is a pain reliever always 🙂

  10. Oh Tara… this is all so scary. The fact that it is so beautifully written and presented in a very clever way makes me think, “no, not her… look at her creativity and how she is so articulate.”

    I’ve always been under the erroneous notion that people who have seizures can’t be that smart. Your blog always teaches me something new, and also to stop being judgemental.

    Hugs to you… thanks for sharing! : )

    • I have always thought having limitations people cannot see works both ways for me. I can allow people to get to know me before they make judgments based on my limitations, yet because of this, people never allow room for error. There has been more than one occasion I have walked into walls or tripped in front of people. Once it was assumed I had alcohol poisoning at an emergency room when in reality I had never drank and was having a severe reaction to a new anti-epilepsy medication and recovering from a seizure. Even with experiences like this, I would prefer others be judged on what people see rather than false expectations about someone who has had my experiences.

      I like to always be judged on my abilities rather than my disabilities. It makes me very happy to help alter your “erroneous notion”. Thank you for taking the time to leave this comment.

      Tara

  11. Since you commented on “Heart Stopping” I of course had to check you out. I can’t believe how similar our stories are. I mean I haven’t had a stroke, but the actual structure of the essay. Going from middle school, to high school, to college, to early adult hood (that’s where I am now) and wondering when and where will this stop? It’s nice to see someone else’s writing who understands the severity of a seizure. I once had 6 grand mals in one night (smoking pot plus forgetting meds is a REALLY bad combo) and almost died. My poor room mate/friend stayed up all night with me. OK. Long post. Nice writing.

    • It is nice to have you stop by. I always find it interesting to read about others who have had a similar experience. There are so many people who have epilepsy. It is a shame more answers have not been found about the hows and whys of epilepsy and treatment. I still have great hope about someday there being a magical cure.

      Tara

  12. Reblogged this on The Gulkin Gazette and commented:
    I’m still experiencing the ‘after-article’ chills from all of the parallels I found within this post, mimicking my own mischievous battle with temporal lobe epilepsy.

  13. […] Perspective of An Epileptic Growing Up […]

  14. I also have epilepsy my tonic clonic seizures are under control with meds and have been for years but i still have lots of little one all the time, and the meds make me so draggy.

  15. I love this descriptive narrative. Thanks for linking up today and sharing. This is a great tool for awareness.

  16. I was glued to every word you shared. All the words that he can’t tell me because the seizures won’t let him. All the things I know he must feel and think and want to say.

    Thank you for sharing such an intimate glimpse into your heart.

    And for linking with us to spread awareness today…

    …danielle

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