I am finally letting this baby make its way out into the world. I’ve been working on it for nearly a full month now and I just cannot keep attempting to edit it into perfection. Even now, after reading it yet again, I find myself sitting here staring off into space. Yes, it is that taxing and that much work. Forgive my imperfections! As with my last post I’m going to include some photographs just to keep you from getting too bored. They have all been taken since the accident as it is one of the few things I can manage to do more easily. They are totally unrelated to the content, or at least I think they are!
There have been some who have inquired as to the symptoms I’m dealing with after the concussion. I’ve struggled with just how much to share. For now, I’ve chosen to be wild and crazy and share some of my experiences during the last seven weeks. It is actually helpful to me since it solidifies my experiences by getting them down in writing in one more or less condensed version.
I am writing this not so as to get sympathy from anyone but more for educational reasons. The reality is that concussions and seizure activity can be very different for different people yet for just about everyone it remains invisible unless the seizures produce convulsions. This is my version of the experience.
I have not been diagnosed at this time with either epilepsy or having had seizures. Both will require further tests before that determination can be made. I’ve already had – and failed! – a regular EEG. At some point I will need to have a sleep deprived EEG, something I’m not at all looking forward to since it requires staying up the entire night! The idea, of course, is to stress the brain to see if seizures are manifested during the EEG. The first EEG I had was difficult enough for me. Adding sleep deprivation doesn’t sound like fun at all.
I’ve kept notes concerning how I’ve been feeling. At first I was writing almost daily but how many times can you keep saying the same thing? So now I write if anything seems different. Those first days I wrote a lot about the blankness I was feeling, staring off into space more than being alert. I’ve come to understand that the blankness serves as a shut down mechanism for my brain so it doesn’t overload the circuits while allowing my brain to rest and keeping it from more serious issues like a seizure. My brain has had too much stimuli at that point and needs to withdraw to protect itself. Certainly the brain is still processing during those times of blankness but in a very down-regulated manner which means my overall awareness is not as good as it would normally be.
Speaking of focus, even when I’m at my most alert I still lack focus and constantly have to fight to maintain even that diminished focus, something very evident when I’m driving. Staring off into space isn’t exactly a good thing while driving. Perhaps, then, you might understand the issue with driving – it isn’t that I cannot drive and drive “good enough” but rather that it is a tremendous amount of work to keep my brain focused. My brain quickly tires to the point where it wants and requires a break – staring, blankness, even sleep. Often when I get to my destination I sit in the car for five minutes before I get out so as to recompose myself by resting. Because it takes so much energy, my driving is limited to rather short distances and the next day or two are spent recovering. As an aside, because of the work it takes a brain to manage during the day, I’m often taking two naps a day, each about an hour long! This from someone who never normally naps.
All stimuli are difficult at this time. Bright lights (merely being outside in the sun or even under the awning looking out toward brighter light, for instance) are very stressing to my brain. I cannot ride with the top down on my car. I have to wear my sunglasses while in the car to keep my eyes protected, something I maintain when going into stores since fluorescent lighting is difficult. Sound is even more obnoxious since it makes my head feel like it will certainly spin right off at any moment while exploding at the same time. Kids’ voices, particularly if they are screaming or crying, are horrible for me. Laughter, kids’ or adults’, can also be difficult. Not surprisingly, male voices tend to be easier to deal with since they don’t hit those higher notes that bother my ears so much. As a result of this sound sensitivity I find myself unable to listen to anything other than gentle, soft music and even that has to be kept at a lower volume. Stevie Wonder’s harmonica playing is not welcome at this time! I find going into stores with their background music to be sheer torture right now. If you have never experienced it, it is hard to explain just how torturous sounds can be at this time. It is more than just the horror of the sound; the brain almost immediately goes into overload and, as a direct result, I find myself unable to control the explosions in my brain which end up manifesting in feelings of frustration as I melt down. I went to a food store a few days ago where they have relatively loud music playing throughout the store. I hardly got into the store when I could feel my head reacting to the sounds. I almost panicked not knowing what to do – should I sit down to rest (but I’d still be in the noxious environment), should I run like hell out the door to my car (what a wasted trip that would’ve been) or hurry as quickly as possible to get what I needed and then get out while running the risk of greatly exacerbating the craziness in my head? I chose the last one but not without great difficulty to my being. I got woozy and quite blank as I progressed through the store, my brain clearly looking to shut down to protect itself. Did I make the right choice? No clue but I made it home safely with the food I wanted to buy. It took two days to recover from the exaggerated symptoms.
Mornings are the most difficult time of the day. In general I am more sensitive to everything and all my symptoms are increased. One morning I decided to watch a TV show because there was nothing else I could do. The background music they used had more treble in it and I actually had to stop watching the show until later in the day when I could better handle the sound. It made my brain nuts, like fireworks exploding uncontrollably in every direction imaginable! The only thing that I’ve come up with to explain this hypersensitivity in the morning is that it is taking longer for my brain to wake up and properly process what would be very normal for the average brain. Perhaps there is a better reason but that’s the only one I’ve got for now! Another example – this morning when I took my shower the water hitting the shower floor was way too loud for me and I wanted to run out of the shower! I had to make sure the water hit me rather than the floor which cut down on the intensity of the sound.
I’ve been experiencing a lot of what I call wooziness. The doctor told me this is vertigo. Mornings often find me walking as if I’ve been drinking. I’d never pass a sobriety field test – walk a straight line! Ha! I’ve learned to be more careful during these times so as not to risk falling. Today I stopped at the supermarket to get a few things. When I was waiting for the cashier as he rang up my order I found myself starting to get really woozy and needed to hold on to the counter so I wouldn’t fall over. It is an odd feeling, almost fun but for the inconvenience and potential danger. For years I suffered with low blood pressure and the dizziness that goes along with it. This is nothing like that which is why I do not use the word “dizzy” to describe it. I never feel like I will pass out as I did when my BP dropped. Instead, to me it is like some kind of weird warping thing my brain does, as if the stimuli coming in and my experience of it are no longer in synch. You know when you are watching something on television and the visual of the person speaking and their voice don’t match up? It’s a bit like that. It feels to me almost like my brain cannot process things fast enough so there is a gap between my visual experience and my brain’s processing of the stimuli. It is quite bizarre.
There was another experience I had that was closely related to the above. It happened when I moved my head to either the left or the right. Imagine if you will what an old time movie looks like. It is visually a little choppy since the frames per second were not high enough to produce smooth actions. Rather than zzzzzzzzz, it was more like z..z..z..z..z.. To a healthy brain it is probably not a big deal since it naturally fills in the blanks and experiences it as smooth enough. But to a compromised brain those choppy moments are exaggerated. So when I would turn my head either left or right it was choppy, like an old time movie, rather than smooth. It was clearly a processing issue. I experienced it only in the mornings and only for the first three or four weeks. The feeling was quite disconcerting and very disturbing to me so I would do my best not to turn my head in either direction thus cutting done on the experience. Then one day I realized I needed to actually force myself to pay attention to the experience if I was to attempt to describe it in any real way. Once I paid attention and really allowed myself to feel the experience fully, I realized why I did everything I could not to experience it – I hated the feeling. I’m learning that when I really hate a feeling, like the strobing lights of the EEG or turning my head as I just described or high pitchy sounds, it probably has something to do with my brain being overwhelmed. Best to give my brain a rest and not push it.
Not surprisingly, I’m getting headaches. At this point they have not been too bad. They are certainly aggravating and concerning but since they seem to come and go, they just aren’t all that bad for me. I’m grateful for this little piece of good news and hope it remains this way while improving to the point of no headaches at all.
One of the things that concerned me the most is the lack of affect I experience. My emotions feel flat to me. I’ve always been a passionate person and it is one of the traits I’ve liked the most about myself. Evidently passion has gone on a walk-about and forgot to take me along! The only emotion I feel at all seems to be fear. That I would feel fear makes perfectly good sense since I’m in a very vulnerable position with a brain that isn’t functioning normally. I guess more correctly stated, my brain is very vulnerable right now. Thankfully I can fairly easily keep fear at bay by merely changing my focus. Within moments I completely forget whatever was making me fearful! Being forgetful has its perks. Evidently emotions take a great toll on the brain and so not having any is another one of those things that helps keep the brain from getting overwhelmed while compromised.
My memory sucks. Ugh. The worst of it is when my memory fades out completely and I’m left with nothing in my head. Scary in those brief moments. My word finding ability has been quite spotty. Way too often I find myself searching for a particular word and not finding it. Frustrating to say the least. Part of the memory issue is because I cannot pay a whole lot of attention to things. I try but fail more than I succeed. The interesting thing about memory is that it is best laid down in the brain when accompanied with emotions of one kind or another. Think about that for yourself – what is it that you remember more vividly – the everyday, boring things in your life or the high/low points that are accompanied with emotions? Thinking about it in this context it becomes obvious why someone with a head injury and flat affect would have difficult with memory also. Another way of putting it is that the brain is just too tired and in need of healing to do the work involved in memory.
My fingers now twitch. Not horribly and mostly not visibly but it can be obvious if you are watching my hands. When I hold my iPhone sometimes I need to hold it with both hands to keep it from flying out of my hand when the twitch comes. Flying iPhones are not a good thing; they have a tendency to crash land! This is also an issue when I try to handwrite anything, as I do in the mornings when I’ve attempted to resume my writing. I’ve found I not only have difficulty with staying focused but also the work of trying to keep my hand still enough to write is very taxing on my brain. I usually find I can only write a paragraph or two before I can no longer continue. Just prior to the accident I was easily writing 12 or more pages every morning.
When I walk outside I have found I no longer feel part of the environment. Removed if you will. It is as if I’m no longer able to actually feel what’s around me. It’s a very odd feeling yet, at least on one level, a bit comforting in its feeling of safety. Things don’t effect me since I’m no longer in touch with them but life sure does become a whole lot more boring when it just passes you by like that.
Some might say that obviously I’m still quite capable of writing but I’m very aware of the differences I both experience internally and see in my writing. As I sit and edit this post I see errors all over. Some I correct and others I leave. Cohesiveness is extremely difficult to manage. Achieving it is something I just don’t seem to worry about right now since it feels like far too much work to get there at this point. I have to be very careful not to say the same thing more than once or refer to something I thought I already wrote but didn’t! It is just too easy to forget!
The writing I long to do and seem incapable of for now occurs when I go to what I call my “deep place”, a place of quiet solitude within myself that is very different from when I write something more simple like I’m doing (or trying to do!) now. It is from this deeper place that I find I have written the things that mean the most to me, all dealing with the spiritual life. After mom died in January I found myself not long afterwards beginning to get back to this type of writing. I’ve done it in the past but with mom’s ever increasing needs prior to her passing I found it very difficult for me to maintain the kind of focus it required since I was always getting a phone call from the facility or from mom herself. For over two and a half months I wrote pretty much daily after her death, every morning until the accident. Within that time I hand wrote well over five hundred pages! The words were flowing, a gusher of wonderful thoughts, each one better than the one that proceeded it! I was able to fully and completely devote myself to this writing. I was peaceful and happy, even joyful, as a result. I now find I can no longer write in that manner. I feel lost and without direction. You would think that losing a fully functioning brain would be the worst part of this but, no, for me it is the loss of this amazingly special place I found within myself every morning, connecting with the Divine. I knew the material I was writing about was capable of changing people’s lives since it was changing my own. I hope and pray that I can get back to this work and get back to it soon. I believe this is my legacy and the culmination of a lifetime of work in the fields of spirituality and psychology. I’m hoping that even if I cannot get back to the writing part soon at least I’ll be able to start transcribing it from my handwritten journals into the computer so as to keep myself enveloped in this beautiful work and energy. For now, reading my own handwriting has proven more than my brain can handle without going into overload.
This is ending up becoming a much longer treatise that I had expected. It has taken me a few days to get this written and will probably take at least another day or two to edit it (in reality it has been nearly three weeks of editing!). If you’re really observant you will see the issues I’m having with writing even after my corrections. There were times when I left a space for the word I couldn’t find and was later either able to fill the space or find another word entirely.
Now that I’ve written this and started the editing process I’ve become extremely aware of the differences in my writing. Oh boy. Not at all good to see but now that I’ve written this I’ll have a baseline from which I can later compare as I improve. And that’s what I say when I’m feeling optimistic. When not so optimistic I fear deeply that my life as I knew it up until the accident is forever over. Seeing the neurologist’s face, as he told me my EEG results, in my mind’s eye helps to support that fear. I worry I’ll be losing my independence and will no longer be able to travel on my own. I try not to go there too often since it is of no help to me whatsoever. Still, I do end up there on occasion.
I am in the process of trying out my third anti-seizure medication. In fact it is time to go take another dose right now. There are even hurdles to face with this medicine since it is not in my insurance plan’s formulary and may not be covered as a result. Apparently the neurologist’s office will attempt to work with the insurance company explaining to them why I need this particular medicine. That is, if it works.
So that’s about it for now. Time to wrap this thing up but I’ve got no pithy ending and I don’t feel like looking for one in the moment! My brain is tired and needs a break. Thanks for reading.
[Just a note on the editing process – it is taking me so much longer than usual since I am finding myself unable to read through this all the way through! Then I forget where I was when I stopped and start from the beginning again only to not make it through yet again! So please forgive any errors that might be remaining since my editing skills aren’t so great in the moment!]
© 2016 deborah kauffeld