Overcoming obstacles with Optimism

Night falls, in the stillness you lie in wait. Will it come tonight? Will it be bad? Will it leave me in pieces, or will it leave us in peace? Epilepsy was the thief of the night for many years of my life. I never knew when it would come. My seizures mainly struck when I was drifting off to sleep. It would fill my evenings with negative anticipation. It was always my Disease of Waiting.

It is a disease of waiting for that next unpredictable lightening strike, but it is also a medical condition that may be more painful for the observer than it is for the victim. Now, do not misunderstand me, I know that seizures can range from a mild case of moments lost to a life-threatening occurrence. I have suffered all levels. But I have also gained the knowledge of what a bystander will see as my mind slips into unconsciousness. I understand it is a blessing when our mind shuts off. Our body can thrash. We will wake confused with pulled muscles, a pounding headache and exhausted limbs. But understand that through the suffering –I bit hard into my tongue-, through the thrashing – I bruise, I may bleed- during the seizure event I do not feel the immediate pain. My body has been gifted with the ability to feel nothing at all.

I have watched my seizures though. After years of not understanding why I would wake so sore and confused, I finally saw a videotaped seizure event of myself. I know what you see. I have seen a severe tonic-clonic seizure from the eyes of an observer. I do understand the pain, hurt and suffering that the seizure can cause you. I understand the wild fear that fills your eyes with the morning light.

I cannot take this rightful fear away. I cannot offer you absolute calmness. It is my wish though that I give you this knowledge: When seizures held tight onto my body, I did not feel the pain and misery that you observed. You were the only one in the room with the ability to feel instant pain. I am sorry caretakers for what you have to see. I hope that by gaining this first-hand knowledge some of that fear, even if it is just a small amount, may be able to be released. Hold onto this realization, embrace it: Some nights will remain quiet with no electrical storm in the brain. Other nights, realize that this too shall pass; it always does.

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Comments on: "When Seizures Seize the Night" (12)

  1. Thank you for sharing this, because of you I have been able to understand a little of what my son may experience. He is too young to explain things to me.

    The fear from watching a person have a tonic clonic will never go. I’m sure of that. But having a stong faith in God helps to comfort and control the emotions of watching.

    May God Bless you
    x(hug)x

    • No, your fear will never go away. Though I wish it could for you. Just remember that at the immediate time of his seizure, he is not feeling pain. You are a very strong lady. I am sorry for the suffering that you, yourself, have to feel. You are in my prayers.

      Tara

  2. Hi Tara
    This might sound like a stupid question from a parent of a young person with uncontrolled epilepsy, but even though I have supported my son and I have seen how he is disorientated and his motor skills are impaired, after a seizure and I battle with him sometimes to curb his focus and determination to charge off in the most undesirable directions with strong body movements; I would like to know, what is he feeling, what does he see, what does he hear, what sensations is he feeling, when I am physically guiding him to his room to rest and speaking softly to him in reassuring words, following a tonic clonic seizure?

    What is he thinking when he settles with my assistance to lay on his side on his bed watching me as he falls into a restful sleep. I see a need in his eyes. I know it is a communication to me, though not in words as he will stay laying down on the bed and fall asleep to restored strength only with my presence, not for anyone else.
    if I get up and just step through his door to the bathroom to get a drink he attempts to rise from his resting place.

    Could you have a stab at this question for me, ignoring the profound intellectual impaired component. Hammy feels as we do I am sure of that, but he can not speak so I can never ask him.

    You write well and I think you could help me to understand this better. I have never been able to find anyone who could put this in a way that I could understand or even really understood what I was getting at by asking the question.
    Sincerely Anne O’Rourke

    • Anne,
      I have had the unique experience twice of being trapped within my mind without being able to verbalize thoughts with words. I have a view that even when we cannot communicate, the mind is working on preparing messages. I sent you a lengthy, detailed email to attempt to answer your question based on my experiences. I truly hope it helps!

      Enjoy your day!
      Tara

  3. Tara, re. Anne’s question, would you be willing to share the key points of your response to her in this space, so that others may learn from it? The clarity of your first-hand perspective is truly valuable.

  4. Graceful.Hope said:

    This blog post is the closet thing I have ever read that describes how I and the people around me feel. Your comment on my blog was touching and I thankyou for the lovely comments. I hope the fear of seizures leaves you and you really are blessed as you say to have your lovely daughters.

  5. Thank you Tara, so much. What a gift you are. Have you done a post answering Ann’s questions? I’d be interested in that too! This is a blessing to know. God bless you and let you know how much He loves you today!

  6. Debbie,

    I will work on creating a post to answer the questions this week. Thanks for the reminder! 🙂

    Tara

  7. Maggie said:

    Tara, I have just subscribed to your blog. How good it is to connect with another who experiences the same as I do. Thank you for reading my blog. You are wise, and selfless with information that is borne of your seizure experiences. I hope to stay in touch with you. The epilepsy conference I just came from was full of people who have much courage and strength.

    • Maggie,

      Your kind words mean a lot to me. You have a great blog; I enjoyed reading it. It is always nice to connect with people who have had similar medical experiences. It encourages me to write more as I find strength learning from these challenges.

      I want to hear more about your epilepsy conference. I hope to attend one someday myself. Looking forward to hearing from you soon!

      Tara

  8. […] and patience. We want you to care but not live your life in painful worry. Seizures are my “Disease of Waiting”. I don’t know when the next one will occur or if it will never happen. I don’t know if the […]

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