Thanksgiving

My father left on Wednesday morning after a twelve-day stay (slightly longer than originally planned, for reasons that will become clear in a paragraph or two; I assume you’re shaking with anticipation [ha… shaking… get it?]).

In some ways, the last few weeks have been heartening. Dad came both to gauge the situation and to serve as back up. I’ll admit that I was kind apprehensive about him staying with me and my husband for such a stretch; it’s not that I don’t love my parents, but A and I are relatively private people, and I generally value the ability to temporarily separate myself from the rest of the world. As it turned out, having him around was tremendously useful for all three of us. Andrew got a bit of a break from being the sole seizure-watcher, Dad got to explore the city and to better understand what we’re dealing with, the two of them got to bond, and I got to go about my day bolstered by the constant availability of a wingman. In sum, constructive and reassuring.

My dad is pretty great. So is Menchie’s.

Though I’ve been trying to live life as I normally would, my seizures recently decided that after a period of relative calm, it was time to remind me that they’re still here, that letting down and attempting to ignore their ever-presence isn’t in the books right now. Spending more than a few hours alone with the awareness that the likelihood of experiencing a partial-complex or simple-partial is high—in the past, my seizures were by and large contained to the evening and night, and while my tonic-clonic seizures still are, other daytime seizures have become more frequent—can be terrifying, and it wouldn’t be fair, or productive, for my husband to stay home with me more than a few times a month if the perceived danger isn’t at a critical level. This was the gap that my dad’s daily presence helped fill, and his willingness to travel here and give us that assistance is evidence of what an incredible guy he is (you’re the best, Dad).

As it turned out, his visit was also well timed. Five days in, I went into status again and after a night in the ER was admitted to the neurology ward for observation and medication titration. For Andrew, it was nice to have someone to carry some of the burden; he could leave for sleep breaks and went to work for a bit on my second day in hospital. For my father, it was good to see the reality of co-existing with epilepsy (or so he said, anyway). I was too out of it to be appropriately grateful at the time, but I of course benefitted from having two support people and magazine-buyers.

My memory of the whole thing is a little shaky, since it took a lot of meds to stop the seizures (though I later found some interesting pictures on my phone… capturing the moment is apparently important to me when I’m in a postictal state, as is sending friends incoherent texts about ice cream [I’ve instructed A to confiscate my phone from now on as to avoid potential/further embarrassment]). I do, however, quite clearly remember the kindness and competency of the doctor in charge of my case. My experience with neurologists and epileptogists hasn’t always been the greatest; I’m convinced that the more specialized a medical professional, the worse their bedside manner. Being given agency in my care was thus unexpected, refreshing, and encouraging, a silver lining, if you will. More about that in some future post.

This is what I do when I've just come out of a life-threatening seizure state. Documentation is important, people.
This is what I do when I’ve just come out of a life-threatening seizure. Documentation is essential, people.

Besides boosting my faith in the capacity of neurologists to treat patients as human beings rather than as living, breathing problems to be solved, there was another positive outcome of this hospital sojourn—Dr. Awesome found the probable root cause of my epilepsy. There’s comfort, for me, in explanation. There’s also a clearer idea now of possible treatments, together with an increased comprehension of the critical importance of taking care of myself by resting and avoiding stressful work, life, and social situations (which almost definitely contributed to this latest crisis) in order to avoid the avoidable. Onwards.

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2 thoughts on “Thanksgiving

  1. What a great post!

    I am sorry you had such a severe status episode.

    As a Dad to a really young girl with epilepsy, I am completely involved and she has no choice in the matter. One day, she will have a choice (I hope). When she does, I can tell you from the perspective of Dad: I will be honored to help take care of her. I have no doubt your Dad feels the same way. Us Dads don’t always express some emotions the best way or at all. And, this situation could not be more difficult as epilepsy can be so invisible at times. My heart is warmed reading this post and seeing you and your Dad in that picture. (This experience meant more to him than you know.)

    I read the last paragraph, and I felt like someone just slapped me! Holy moly! I am genuinely excited! I have all these questions…! You have a focused direction now, and that is wonderful. Looking forward to reading more.

    You do have awesome parents. And, A sounds like such an awesome guy. God is watching over you for sure.

    As always, thank you so much for sharing your experiences with us.

    Take care,
    Ken

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