an update…finally!

Believe it or not, I’ve already written five different blog posts, none of which I’ve come close to posting!  I write them at night and never get back to them again!  Guess that tells you a bit about how I’ve been doing.

I am quickly approaching the one year mark since the car accident that changed everything for me and what a helluva year it has been!  I’ve learned way too much about TBI’s (traumatic brain injuries), seizures and epilepsy.  After a four month wait I finally got to see a neurologist here in Tucson.  A month after that I spent five days in the hospital while undergoing an EEG that entire time.  I was not allowed out of bed without help and only to go to the bathroom!  The whole time I was also being videoed as well as audioed (yeah, I know, no such word but I’m betting you know what it means!).  Big brother was watching!  Sadly there were no seizures for them to observe which was the goal of the whole thing.  I’ve still not gotten the results, if there are any, since my appointment is not until next month.  It is possible that even without any out and out seizure activity there could still be abnormal brain activity.  

My view for the five days I spent in the hospital. Between the TV and the clock you can see the camera and audio recording device. There are actually two cameras – one for daytime and one for night when there is little or no light.

I’ve written little since I have little to say.  How many times can one write that they have had a nocturnal seizure or they are walking around like a total zombie?   My memory, certainly better than it was in the first couple months post accident, is still pretty horrible.  When I have good days I really take advantage of them by finally catching up on cleaning the house, doing laundry, going food shopping or grooming Picasso.  Mostly my energy has waned big time, not unusual after a TBI.  Time has undergone a dramatic change for me.  It often feels like it doesn’t exist anymore.  

While I certainly wish the accident never happened, there are things I have found fascinating about the whole situation.  Having taken courses about the brain during grad school it is quite interesting to see those issues in myself.  There is often a strong feeling of dissociation that I experience.  During those times I feel completely disconnected from my environment as well as from myself.  Speaking with me can be most entertaining since brain and mouth are barely talking with each other so the weirdest things can come out of my mouth.  Sometimes I can hear what I just said but most times the other person gets quite confused trying to make sense of something that doesn’t make any sense.  

This is the view from my apartment complex of the Catalina Mountains. I never tire of that view!

I have spent a lot of time reading about epilepsy, a diagnosis I now share with far too many other people.  I get to read first hand experiences from other people many of whom suffer from grand mal (tonic-clonic) seizures.  I cannot tell you the utter respect I have for these people and their harrowing journeys.  The courage and strength they exhibit on a daily basis is beyond my comprehension.  Their compassion and empathy for others is huge.  My story does not compare since I, gratefully, do not lose consciousness during my seizures, the vast majority of which occur at night while I’m sleeping.  However, after a nocturnal seizure I can be terrified to go to sleep the following night, something I found many others experience also.  One woman told me that “sleep is not my friend”.  I understand completely.  I’ve not had a daytime seizure in over six months at this point because of the anti-seizure medicine I now have to take.  I am allowed to drive but I self restrict my driving to days and times when I’m feeling well and limit my distances.  I used to drive thousands of miles on trips.  Now I’ve been averaging 40 miles per month!  

This is a grandfather saguaro, around for well over a century! Picasso and I can walk there from our apartment.

Believe it or not, I’ve not taken my camera out once since moving here almost six months ago.  I really have not felt up to it until just recently.  I’ve felt the loss of that, too, because that is my major area of creativity.  While I took lots of photos after the accident while living in North Carolina, here I find I have to drive to get somewhere to take photos which has pretty much completely limited my ability to shoot.  I’m hoping that might change soon since I found myself thinking about getting out with camera in hand.  If nothing else I can always Uber my way somewhere.  That’s a step in the right direction.

I am writing all this so as to give you an update.  I’ve come to terms with my new life, at least most days!  Please, no pity but I will take support and love!  It really has been rough year but I’m hoping for a vastly better one coming up.  Be patient with me…I’ll be back soon!  Maybe next time I’ll even have some photos of my new desert life! 

© 2017 deborah kauffeld

Photos taken for this post were from my iPhone.

6 responses to “an update…finally!

  1. So glad to get an update — I think of you often and am glad to get a glimpse of how things are going. And I very much look forward to some of those other posts.

    Definitely sending support and love!!! I’m sure there are times it doesn’t feel like it, but I know you’ve been through much and are stronger than you may even realize. I do hope that this coming year brings continued healing, opportunities, and happiness for you.

    big hugs,
    –arden–

    • Hey Arden! Always good to hear from you! I’m sure I’ve said it before (but who remembers!!! Hehe!) but I really do appreciate your support and presence.

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