Wednesday, February 26, 2014

I woke up on November 9. I felt someone stroking my stubbly little head. I opened my eyes a little, and saw the round bottoms of my friend Jan’s glasses. It was like looking through one slat of a horizontal blind. This was amazingly confusing. Jan lives in Los Angeles, and hates wearing her glasses. Where was I? Why was she here? Very quickly, Kenny came into the frame and started talking to me and telling me where and what and why and how.

She is awake. Her friend Jan Jackson and I were talking to her at bedside when her eyes flew open wide, she pushed her head in the back of her pillow, brows furrowed, and there was a totally obvious WTH look on her face.
From that point on we asked her a number of "yes" and "no" questions: Are you Cynthia? Do you know who I am? Jan? We talked about our sons and family members and there were nods of awareness for every question. She is awake. And she is "there"!


I would like to say this awakening was without problems. It would be like a movie – I would wake up, be fine, walk and talk and resume my life with a minimum of fuss. But it wasn’t that way, and as I read Kenny’s notes about the days that followed I am more amazed (and frightened) each time. To prepare this chapter, I’ve read the notes again and again, and find something new each time.

I was paralyzed when I woke up.

On the 10th: She had that moment we all feared last night around 6pm when she first realized that she cannot move. It is too painful to describe here.

Gradually, movement came back. Gradually, I was able to get rid of the ventilator, then the trach, eventually they added the “button” to the trach so I could talk. I was able to walk again, and exercise during rehab. (Don’t get too excited here. I had to use the walker and “exercise” involved parallel bars and muttered curses.)

The most interesting thing about this time was the exponential recovery I enjoyed. At night, in those early days of recovery, I had the physical sensation of construction crews in my head – rebuilding my brain. I could hear them talking about replacing plumbing, and support beams, and running new wiring. It made me happy to have them in my head, working so hard.

And, once I got up, it was not a linear recovery. I walked 3 steps the first day, 10 the second, then a lap around the nurses’ desk on the third.

But before those happy days – the early days of being “awake” were days in the ICU of paralysis and hallucinations. I had never known such things could happen, but they can and do. I have never been so frightened. I was convinced I would be killed. I believed I was being held hostage by Harriet Nelson’s grandchildren (and they were David’s, not Ricky’s…). Things were coming at me out of the artwork, the clocks were rolling back and forth on the walls.

I wanted to escape. I pulled my trach out of my throat – to keep that from happening again they put soft boxing gloves on me that I tried to rip off with my teeth.
My precious family was trying to figure out what was wrong, in these early days. They got one of those laminated sheets with the alphabet on one side and phrases on the other. So here I am, trying to spell out “scared” with one paralyzed hand, so I gave up. We tried the other side – “I’m cold”, “I’m nauseous”…that kind of thing. But nothing about “I’m scared they are trying to kill me”. Not even an “I’m worried” – the laminated card refused to acknowledge fear. Damn it.

Finally, there came a night when Travis and Erin said they were going to step outside to get some sleep and I grabbed at them. They saw the fear on my face and were able to ask me if I was afraid to let them go. “Yes,” I was screaming in my head. “There’s a scary man here who wants me dead!”

They asked me if I wanted them to stay. How hard can you nod your head? Oh please, dear Lord, don’t go. I will die of the fear if you do. And they stayed with me. And no one left me at night, ever again, until I went home. I was finally saved.

I cannot shake worry I have for others still in ICU (anywhere). Kenny says he often walked the ICU halls, where there were patients who never had any visitors. Or, if they had visitors they would always be gone at night. What terrors are they suffering? ICU hallucinations are real – that I didn’t know about them doesn’t mean there aren’t dozens of articles about them on the Internet.

But I was one of the lucky ones. My husband created a work station on one of those hospital roll-about tables. His computer, phone and charger…this man was running two TV newsrooms from my hospital room.

He noted every nurse’s name, every doctor’s name and specialty, kept hour-by-hour notes to send to our family and friends. I think he worked because it was less frightening than to sit and watch me twitch and breathe, take faltering steps and try to talk. What I know is that his constant presence was like an extra blanket that kept me safe and warm.

There is one final bit I will put in this chapter – you’ll note I’ve finally decided to give up on a literal day-by-day telling of this. It doesn’t matter, anyway. But on November 19th I had surgery to move my feeding tube from my nose to my stomach. What I ended up with was a hard plastic tube, about six inches long, with a stopcock valve on it, implanted into my torso at about belt line. (Yes, to your question, it does hurt when you get it caught on your clothes.) So, for feedings, they would open the valve and squeeze in this brown goo. This happened several times during the day and at least once at night.

Here’s the problem: When you are delusional, and you’ve been poked and stuck and moved from one position to another…and when you have a deep-seated conviction that someone is trying to kill you…a determined and businesslike nurse squeezing goo into your stomach is unsettling. Damned, damned unsettling. There isn’t any way around this.

The wonder is not that I was a little crazy. The wonder is that I was not MORE crazy.




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