Waiting for test results ramble

~ Hetty Eliot

Just a ramble. Diary crap. Proceed at your own risk.

Halloween couldn’t be a better time for a 72-hr ambulatory EEG. Of the three people who dared to ask me why I had a scarf tied around my head, one thought I was supposed to be Grace Kelly, another thought I converted to a different religion, and someone else thought I was just cold. 

Poorly disguised by the scarf, my head was covered in electrodes and protected by a gauzy cap that was pulled down to my eyebrows. A bundle of wires came out of the cap leading into a little cross-body pouch that I had to carry everywhere with me, even to bed. EKG electrodes were affixed to my chest, and the wires trailed out of my shirt’s neck to connect with the other wires.

The experience was simultaneously embarrassing, liberating, and illuminating.  After I got over the initial embarrassment of my appearance, I felt more confident somehow. When you stick out like a big bandaged electrocuted thumb, you can do nothing but own it. And I got a taste of what it’s like to be hooked up 24/7 to a medical device, which was humbling. When I was getting tired of it, I had to remind myself: Hetty, people do this their whole lives with even more painful things. You can live three days with it.

By the third night, it was just part of life. You simply develop new modes of bathing, dressing, and sleeping. Honestly, the worst part turned out to be getting the glue out of my hair (nail polish remover).  

The three days went by more quickly than I expected. I went out and did all the things I usually do, with the exception of being yelled at by my boss. I was hoping my brain waves and heart rate would be recorded during an incident. The one time you want to listen to her shit is the one time she is nice to you and leaves early. (The woman never leaves or takes days off. She gets seven weeks of vacation a year and she probably takes a week and a half of them, just to ruin our lives.)

Although—- she did ask me, in her inimitable way, “If there’s nothing wrong with you, can you work more hours?”

Why did I have this contraption on my head to begin with? As a mild epileptic, my worst seizures (which are not motor, thankfully, just psychological) are controlled by medication, but I still space out constantly and my memory is absolute shit. I get weird sensations that I’ve disappeared for a moment or that a long time just passed, or that my sight and hearing faded away for a second or two. It’s like flipping the channel, but it’s the same show every time.

Because I’m not aware of what I’m doing, I’ve been increasingly making mistakes I’ve never made in all the years I’ve worked in the office. Though, at the very least, my public EEG has bought me some excuses for the time being.

I will see the neurologist on Wednesday. I pray the answer won’t be a frightening one. Suppose it is—then what? Is there anything scarier than something wrong with your brain? The failure of any organ is scary, of course, but the brain contains existence itself. If we lose that, we lose ourselves. More than myself, though, I worry about my parents.

I’m just depressed because I am in a constant state of foggy confusion. I lose things right where I’m sitting. In fact, I lost my keys today. I put things in bizarre places, like the house phone in my sock drawer. One time I went out of the house wearing a black sneaker on one foot and an orange one on the other. (Remarkably, I had the left/right ones correct.) Another time I discovered myself putting towels into the toilet. Today I was doing my makeup and eating breakfast at the same time, and held up my bowl instead of the mirror.

On Sunday at Mass, during the homily, I swear that suddenly I could not understand the sounds coming out of the priest’s mouth. I heard syllables but they were just noises. I was about to grab my fiancé because I was frightened it wouldn’t stop, but it passed. Maybe his voice was just muffled or he wasn’t close enough to the microphone. Either way, I was terrified.

Every day I embarrass myself at work. Sometimes I don’t even remember what was just said to me and I have to ask to have it slowly repeated two or three times so I can write it down. I make mistakes that inconvenience people—and I cannot stand putting other people out. I’m putting you out right now if you made it this far. Apologizes don’t even hurt my pride anymore.

I wonder how long it will be before I can’t string a simple sentence together anymore? I can tell my vocabulary has diminished considerably. I don’t understand the papers I wrote in college or the books I read. I even forget the names for common objects. I didn’t expect this to happen this early in life, that’s for damn sure.

Looking at myself in the mirror during my test, I felt as though I had become untethered from my normal reality. I imagined floating high above the earth, and looking down to see the places I might land obscured by clouds. There are three possible places: the present one where the results are normal and the frustrating quest for answers continues. The second case: the test reveals epileptic activity and they can prescribe a new medication and I can go on with my life feeling present and normal. The third case: something really bad is causing my problem. That new land seems to be covered with a sooty cloud, full of thunder and lightning. I don’t wish to fall down through that one.  

32 thoughts on “Waiting for test results ramble”

  1. On a lighter note, you can officially call yourself a cyborg. Your boss is not special. They are mass produced in a factory. I am so glad you have some social support. An arm you can grab when you need it is a wonderful thing. I wish there were something I could say to make you feel better, but all I have is “You will be fine.” I assume you are also working with a specialist who can help you adjust to your condition? You may need someone with you constantly to make sure you are safe.

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    1. I really appreciate your kind words. Yes, I am very lucky I have someone. And I tend to not do things that require unwavering focus. I do have a doctor and all, it’s just that wish for a definite answer to things. I hate being in the limbo of wondering what’s wrong.

      But pleeeeaaaaase don’t say my boss isn’t special! Don’t tell me people like her are mass produced! There will be no point in going on living if there are more just like her! 😱😱😱😱😱😱😱😱😱😱

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  2. Hi Hot,

    Of course, I feel bad for you. Sorry. I have a question: have you figured out why you can write so well while dealing with your condition? The two are not antithetical? If not, then does the malady increase your capacity to write? As you’ve previously implied, maybe it does give you a somewhat unique POV. At any rate, I am wishing you the best, with or without super powers. Mr. Duke

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    1. Thank you for that, although I don’t think I write so well. But I think it comes down to having an answer. If I was certain I would not continue deteriorating, I think I would feel more freedom to let go and figure out ways to work around and through my issue.

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      1. You write well because you understand logical flow, innately, and learned how to cut the crap in college. Anyone who believes writing is magic is too lazy to get it. One hears it or doesn’t, works at it or doesn’t. You could be fucked up on 16 medications and still be the sharpest crayon in this drawer.

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        1. Thank you. I see how laziness is a big controllable factor. Supposing one has even a limited ability, everything else is just noise you have to cut through, provided you aren’t lazy. There’s the rub…

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          1. Well that bit wasn’t directed so much at you but for those you contiually say “Gosh, you write so well. What’s the secret?” Work at it, mofo. You get it, you just have a few issues to deal with. Might do your mind a world of good to write just for the hell of whatever’s in your head. Might be interesting as well. Even when you’re not trying to get anywhere.

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            1. You know, I do feel a bit better and slightly less inhibited than last month. Last month I could do nothing. It’s hard work even allowing it to come out. The blockage must be worked on just as hard as what we think of as the actual “writing.” Maybe harder.

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  3. You’re a conduit for an alien intelligence, the worse you get the better and more vivid your writing becomes. Soon you’ll be bed ridden, eye-blinking Morse code stories of incredible worlds and experiences… I can’t wait.

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  4. I am sorry to hear you have to contend with this condition, and also the worries about your future. I understand that often it’s not self-concern so much as concern for loved ones who might be left having to look out for you. Nobody wants to put somebody out, but it’s what we do for each other as people.

    I hope that you are in scenario 2, the best one. The symptoms you have are already there, it would be wonderful to have answers and even solutions to them. For the time being, I think you are right to continue writing. Your experiences are important, and sharing them is a gift.

    [Do you by any chance use Bitcoin? I have a side project on the go but part of the format is that I am only paying for content with small amounts of Bitcoin. If you might be interested, let me know at my contact address (in a recent post with weird syntax)]

    I will send prayer points in your direction.

    Also, your boss sounds like a piece of work.

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    1. Thanks for stopping by, Mike, and leaving your thoughtful comment. As you rightly point out, it is often concern for our loved ones. It’s the thought of how they’d feel if they had to watch something bad happen to me. And I also would like to avoid the blubbering. I must just keep going on with what I’m doing, regardless of whatever news I receive tomorrow.

      I don’t know anything about Bitcoin, though.

      And yes, my boss is a piece of work. A very big piece of work.

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  6. Dearest Hetty, a warm hug. I hope your results and today’s meeting are all positive. You are brave and strong. The body always wants to heal. You will get better. Do not fear, you are a powerful and God is with you. Keep his hand in yours and he will guide. Remain positive and magic will happen a long with Gods love to transform.

    Take care and I wish all news is good.
    Take care, with love Bella

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  7. Dear Hetty, read this book. By ANNA PARKINSON

    Book called
    Change your Mind, Heal Your Body: When Modern Medicine Has No Cure the Answer Lies within. My True Story of Self-Healing.

    She had a brain tumour and cure her self. And it was all to do with letting go and healing. No negative thoughts an no holding on.

    For me it was a good that made me really understand the impact of our thoughts and negative tendencies.

    All the very best

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    1. Thank you for the suggestion. I own a few other books like it and would like to check it out. I think that little is known about the abilities of the mind and body to heal itself. Doctors would rather just send you for test after test than take the time to learn about how your mind and body intersect.

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  8. I’m not sure what the problem is. Sounds like a normal day for a lot of people I know. Well, the toilet towel episode… I have no electrodes, but I often ask myself why can I remember the lyrics to 50 year old songs and not why I’m looking for coffee cups in the refrigerator. With the door open. Do I need electrodes?
    And that Homily thing? Thanks for not making me feel like the Lone Ranger. I thought, you know, that’s just me.
    There’s a theory out there that depressed and confused (See, there’s a Zeppelin song) should go to Peru or somewhere, take a guided psychedelic tour by a tribal medicine man to blow out the cobwebs.

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  9. I’m amazed how insensitive your boss sounds. And how strong you are, despite everything that is happening. No need for appology in the post, it was a nice read, even though it was bitter.
    *sends a hug* I don’t know what else to add. Take care Eliot.

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    1. Hi Maja, thanks for reading. Yes my boss is insensitive… that’s too nice a word, actually, lol. I don’t really consider myself strong. Time marches on and we’ve got to deal with it one way or another, even if that way includes lots of whining and complaining! It’s good for the soul, trust me. 😃

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  10. Have never heard of psychological seizures before and you’ve enlightened me today. Waiting for results always does a number on your nerves, no matter how healthy or sick you are. Wishing you all the best for that.

    I like how you put your doubts and suffering into words so eloquently. Makes me wish that my diaries are half as elegant. Am staying tuned for what happens at the neurologist this Wednesday!

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    1. You know, when you reminded me I said “psychological seizures,” I forgot that there actually are seizures that are psychological but not epileptic in nature. So that is a thing. Mine are psychological in the sense that my awareness and perceptions change. I black out and feel sick. They are called focal or partial seizures because they stay in one part of the brain. The bad scary ones are general seizures, which encompass the entire brain. I am very grateful that meds control the small ones I do have.

      Ultimately my visit turned out to be the first possibility–the test results were fine. So, onward and upward I guess (or is it upward and onward?)

      Thank you for commenting about my post and for your well wishes!

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