Overcoming obstacles with Optimism

November is Epilepsy Awareness Month.  In hopes of raising awareness on how epilepsy touches a life, I am posting my initial experiences with seizures.  I encourage you to search the web for other stories to learn how epilepsy can touch any life at any age.  Seizures are not something to fear, but something we do need to be educated about. Here is my story:

I remember the first time I experienced waking up to strangers.  I was 15.  I remember the worst time I experienced waking from a seizure.  I was 27.  These are the earliest and most poignant times I recall not remembering faces.  This was what I consider my early introduction to life with prosopagnosia.  I had the opportunity to experience this condition in short, slightly drawn out bursts of non-recognition.  This helped prepare me to handle similar situations later in life when I completely lost my ability to recognize faces.

When I was in the 8th grade, I started having “spells”.  I described it as an odd sensation that overcame my body.  Next, would come a feeling as if I were in a television commercial.  I knew who I was.  I recognized the environment that surrounded me.  I even knew all of the characters in the room.  But somehow, I could not grasp that I was part of these surroundings.  As I said, it felt as if I were viewing a previously watched commercial on television; a sort of deja vous.  I was very aware of it.  I felt a close familiarity to the happenings around me.  Yet I knew, within my mind, I was not part of it.  I was on the outside, off in the distance, peering into what I saw.  Each time, quickly after the sensation would pass, I would feel tired.  I would pat my face and count my fingers.  It calmed me to realize I was there complete.

I was sent to doctors.  I was prescribed medications.  I was told that maybe this was all in my head.  People had hoped, as doctors had suggested, that I would outgrow whatever this was.  They were hopeful to not have to place a label on me.

The dreaded label could not be denied for long.  When I was 15, I had an undeniable gran mal, tonic-clonic, seizure.  I was in bed trying to fall asleep.  I had a “spell”.  As I was coming out of it, I called out to my parents.  It did not feel right.  I did not feel right.  I knew that something in me was not okay.  I patted my face and counted my fingers.  The numbers did not add up.  There were no longer ten.  I was very scared.  Then, there was darkness.

I woke up in the chilly night air.  It felt as if I were floating.  Somewhere off in the distance, a gruff voice was mumbling, “There she is.  Tara, do you know what day it is?”  Oh, how I hurt.  Why was everything so foggy?  Where was I?  Someone, please, help me!  I am scared.  What is going on?  Why can I not speak?  I was feeling an intense level of panic start to come over me.  My thoughts were spinning as rapidly as my hazy mind would let itself process the clues.  Who is this man that is talking to me?  I have seen him before, haven’t I?  “You are going to be okay,” this voice continued speaking.  I know that I have seen him before. It was dark though, and I was still very confused.   His face became clearer as the fog slowly lifted from my mind and my vision.  Where is my mom?  My dad?  I am so scared.  Wait.  Slow down.  Why do I hurt?  I am so tired.  I just want to sleep.

Soon, I realized I was not floating.  I was being rolled on a stretcher.  Those lights flashing outside were on an ambulance.  I live in a small town with a small ambulance team.  All of these thoughts were processing at a lethargic speed.  That voice, yes, it is familiar.  He must be a doctor.  No, a paramedic would be in the ambulance.  This is my town.  Something has happened to me.  That is my uncle.  This has to be my uncle.  He is the main paramedic in our town. Could this be my uncle?  Slowly, I was fighting to keep hold of his words and not fall asleep.  I was scared at the lack of recognition to the world around me.  Yet, at that stage there was still more fright and concern as to what was happening to my body and my mind.

Seven years after this event, I married my husband.  I explained to him that if I had a seizure, he should never call the ambulance.  It was too frightening.  The sensation, itself, of slipping into a tonic-clonic seizure was frightening enough.  Knowing that I was slipping away carried with it a very fearful feeling.  But I always dreaded the wakening:  When I would wake to a room full of strangers asking too many questions at too rapid of a pace.  These questions, these faces and the possible answers were all beyond my level of comprehension in the postictal state.  Even if I knew the people, there would be the moments of muffled confusion that would leave me all alone in a room of perceived strangers.  That was always difficult:  waking up unsure of where I was, not comprehending what had happened and not being able to identify anyone who was near me when I first regained consciousness to the world.

This continued on for several years until I was twenty-seven.  I had two daughters by then.  The oldest was nearly two years old.  My other daughter was four months old.  One October morning I woke up and the seizures started.  Against my wishes to ever be taken to a medical clinic and be faced with strangers after a seizure, my husband made the correct decisions and took me to a hospital.  It was at this hospital I diagnosed with status epilepticus.  My body started having seizures that morning and never fully recovered before the electrical storm would start again.  My family’s decision to take me to the hospital saved my life.  Seizures lasted all day.  This day of status epilepticus forever changed my life.  This day of status epiliticus wiped away nearly two years of memories.

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Comments on: "My Introduction to Seizures" (14)

  1. I just discovered my ex had epilepsy, something he developed in his teens. The in laws did not tell me until I just found out he passed away. I knew he would black out, and had a drug use he lost control of, not that we have control of those things.

    I am sorry to hear you are still frightened in this way. It brings back another memory of my daughter who hated going to the hospital all together.

    • I am sorry my post brought back sad memories of your daughter. I hope with these memories you are also reminded frequently of all the things that made her laugh and smile.

      Seizures do not define a person. Which brings to mind a quote I love: “Life is not measured by the number of breaths we take, but by the number of moments that take our breath away.” Unknown

      Tara

  2. Thank you for sharing. I’ve learned more about how it feels from your blog than anything a doctor has ever told me.

    • What a wonderful, kind comment. Thank you so much for stopping by and taking the time to write this. I greatly appreciate it. I hope your son soon outgrows his seizures and gives you all the peace you deserve.

      Tara

  3. eosteen said:

    Tara, Your blog absolutely resonated with me. I have heard my family members who have seizures describe the feeling similarly. I am so sorry for your experiences and the hardships associated with it, but your strength is undeniable and your family sounds amazing. Thoughts are with you!
    Neeley

    • Neely,

      Thank you so much for stopping by and taking time to leave your kind comment. Please, never be sorry for what I have experienced. I would not change a thing. It has been a wonderful journey. I am glad I have had the chance to grow from everything I have experienced. My wonderful family and friends have offered me support I could never do without. Your family sounds pretty amazing also!

      Tara

  4. Maggie said:

    Tara, I’m so glad you checked out Martha Curtis’ site. Perhaps you could help me spread the word about her. She helps epileptics of all ages all around the country and in Europe. I have learned a lot from your blog, and I believe that we all need to form contact with one another for support and encouragement. Families can be wonderful. I had had two seizures at a time when I was still teaching, and in my state that means no driving for six months afterward. When I returned to school, a friend and colleague handed me several sheets of paper. “What’s this?” I asked her. And that dear friend had, in a short time, arranged for other colleagues to pick me up in the mornings and drive me home after school. People had signed up, and the entire six months were covered. I was amazed. People are so kind and gracious and wonderful.

    • It is astonishing what your coworkers did for you! In times of need, you can truly tell who your friends are. Indeed you found out there are a lot of people who care deeply for you!

      I would be happy to tell everyone that you have directed me to: http://www.marthacurtis.com/ so I could see what a “spectacular” woman she is. With a music career and a media following, she is a terrific advocate for epilepsy. Her story of not only surviving epilepsy but thriving with it is an inspiration for all! Thank you Martha and Thank You Maggie.

      Tara

  5. nelson RN said:

    It saddened me reading your post, but then I admired your courage in writing this. It must have been difficult putting these into words. Your posts are powerful. They enlighten those who are not aware of this. Thank you for giving me another perspective in viewing cases like yours. My prayers are with you.

    • As you know, your career is one that I am most thankful for. I hope you do gain insight to continue helping us become stronger and better. Thank you for taking the time to stop by. Your prayers are always appreciated. 🙂

      Tara

  6. Thanks for commenting on my blog. Wishing you a Happy Thanksgiving!

  7. Yes, it’s a good thing your husband called EMS anyway! I am always impressed with your ability to turn back time and tell a story as if it’s happening in the moment. I say that because as I read, I got scared, too.

    Also, thanks for the info about field tests, optic nerve issues, etc. I did really well on the field test, but to get a second opinion regarding the changes she saw in the nerve itself, my optometrist scheduled me to see a neuro-opthomologist. I’ll keep ya posted… and have a nice Thanksgiving. : )

    • Linda,

      Thank you for your kind words. My memory of events is always one of the most confusing things related to my bout with amnesia and brain surgery. How do some events stay so crisp in my mind, yet others have been completely wiped away? I remember something clearly from a day in high school, yet the memories of being pregnant twice have disappeared. It’s very odd and has bothered me quite a bit. This has taught me to cherish the memories I do still hold, and write new ones down so they are never again lost.

      I am glad you did well on your field tests, but I am anxious to know how the second opinion appointment turns out. Hopefully it is the news you are seeking. Please stop back and let me know when you get the new results.

      Tara

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