Friday, June 21, 2019

Out of my head


   I’ve been in the hospital. Again. 
   Actually, I went two times. Once, I went to the E.R and was sent home.  Then, I went again the next day and was admitted. 
   For over two weeks. 
   That’s not all.  I don’t remember either incident, and I don’t remember much of my stay in the hospital.  Just bits and pieces of it. 
   For two or three months – actually, since shortly after I began staying up in my chair all day and going out on my own in my chair – I had been getting numerous headaches.  This was weird, because I haven’t gotten many headaches in my life. At first, the pain came when I would go over a bump, then it started becoming more constant and then more severe.
   It turned out that blood was going or leaking into my brain, which was causing pressure and thus the pain.  It is a mystery why this happened.  I hadn’t hit my head or had some trauma.  In any case, I guess Tylenol and Aleve were no longer cutting it, and I landed in the hospital towards the end of May. I eventually had surgery to drain the blood from both sides of my head. 
   I say, “I guess,” because I don’t remember much of this period.  I remember some friends coming by and the woman who came and asked what I wanted for breakfast, lunch and dinner.  I remember eating a bud veggie burger, and I remember joking that the bags hanging from my head to collect the blood made me look like Snoop Dogg. I also remember a very vivid dream in which I was taken to Orlando or Cape Cannaveral to watch a production or the preparation of one.  Perhaps this was when I was in surgery.
   Otherwise, this entire period is pretty much a blank. Several attendants have told me I’d be perfectly lucid one day and then talk nonsense the next day, saying things like my attendant was hiding in the restroom. One attendant told me we watched television and laughed.  Another attendant has said there with one night when I kept spitting up vomit. 
  Maybe it’s for the best that I don’t remember any of this.  But it’s disturbing that nearly three weeks of my life are a blank, are missing, gone. (And, as it just occurred to me, so much for going to the year-end high school music and watching the Tonys.)
   I have now been home for nearly two weeks, which has been wonderful, but it has not been easy.  My headaches have subsided, but my head has been playing tricks on me.  I have trouble focusing and sometimes thinking. The other day, I was going through a pile of mail, paying bills, filling out forms, and I felt my head really straining – and also realized the seriousness of what happened. I find myself grasping for a word or a phase like “cutting it,” in the above reference to Tylenol and Aleve or having to hunt for a letter on the keyboard.  I am having to reorient myself and understand that it is late June, three weeks later than it feels like. 
   It occurred to me the other morning that it’s a bit – a tiny bit - like when I had my spinal surgery two years ago and found myself far more disabled. It is alarming that I’m experiencing these difficulties with my mind, all the more because my head has always been my biggest asset in being disabled, the thing I could rely on when I couldn’t rely on my body.  (It doesn’t help that I’m having attendant shortages and shifts, making me feel unstable, and that a nurse is coming daily to give me antibiotics through an I.V, for yet another U.T.I – these are fast becoming the bane of my existence - which makes me feel like an invalid – and which means I can’t go to my outpatient therapy.)
   But I’m feeling more on top of things, less fuzzy, than I did last week, my first week home. Last weekend, I got rides to and from a movie and meeting, and I did fine.  I went for a short stroll on my own and had no problem.  I’m still planning to go north in three weeks to the Bay Area, where I’ll see family and friends, at to attend Pacific Yearly Meeting, after two years of not being able to do so, in the beautiful, golden hills of rural Marin County. 
   And I’m writing this.  Not only am I able to do this, but I’ve found that doing this helps to calm my head and regain some focus.  I will say again that I’m happy to be writing and posting and that I’ll continue to do so when I have something to say (I may write les over the next two or three months, what with the trip and heat) and am able to. 

2 comments:

  1. Wow John I had no idea that was happening. It almost feels like a story that's happening to a fictional character, especially because you write so beautifully, but then it hits me that it's your real experience.

    I know how much you rely on your senses and i'm sorry you've been going through these things. And those goddamn UTI's! There's gotta be another way besides a catheter. It's like the hospital isn't trying anything new, just letting it happen over and over. I don't what else there is, but there's gotta be something that can change this loop of getting infections. You poor baby.

    I'm so happy to hear that you've been home and feeling better. I like knowing your enjoying yourself in getting to the movies and just being on your usual flow as much as possible.

    I'll keep you in my heart and thoughts and keep up the positive attitude. Love you John!

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  2. Glad you're back to reality. So scary when chunks of your life are "missing"! We need you conscious, alive, well and writing cool stuff! Thanks for sharing!

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