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 10^th: 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 19^th 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.

I'll get back to the meningioma book tomorrow. I am still struggling with the details of the dark time. Kenny took notes, and after I woke up I have "snapshot" memories - not continuous video but flashes of a moment, a conversation, an hallucination or three. I was surrounded by people who loved me, and who wanted me to come back. Now, I am hypersensitive to how vulnerable we all were. Me, certainly, but my husband and children, extended family, and friends were pushing up against the margins. 

In telling my story, I am also telling theirs. Saying you are going to write about something this dark is entirely different than doing it.

And so, today, on a sunny Sunday I think I'll share another strange story with you - another chapter from "Big Purple Foot".

A Strange Protuberance

When I was working in Los Angeles, I had a client whose office was in a city building on Spring Street right downtown.  Nasty, nasty.  I am a fan of gentrification.  I think you should critically look at your storefront to see whether or not it adds to general harmony.  These shopkeepers didn’t to that.  Ugly shops in strange old buildings that had been repurposed more than the whores who worked outside.

I parked my car in the only close lot, turned the corner to hurry inside, and there was some old guy with no teeth yelling at me.  That, in itself, was no surprise and wouldn’t have bothered me on a regular day.  But, he had some kind of tumor-thing growing out of his chest, about three feet long with about a six inch diameter.  Floppy, it was, and he was shaking it at me.  I stopped for a moment to take this in, and then is when I saw he had the end of it inside a clear, plastic sandwich bag held on with a rubber band.

Oh dear, what to do.  I opted for the obvious thing, backed away and got inside the building as fast as possible, went to my client’s office, and asked her, “What the hell?”   

This is another one of those moments that will stick with you.  It makes you wonder about the appropriate response.  Obviously, he wanted one.  Did he want me to faint or have a fit of the vapors?  Did he want me to comment on this thing’s length or flexibility?  Should I have asked what it was?  I don’t know.  I feel, even today, as if there was an opportunity missed to help this man. Maybe. I should have done something, but what?

The hard bit I've been working on.

Deciding how to handle this is going to be hard. After all, I nearly died. They predicted I would be in a permanent vegetative state if I lived. Kenny cautions me not to be too much of a “downer” and I agree. He points out, “We lived it. Maybe others don’t want to know the details.” And I’m sure he’s right.

But I promised to write about the edges. To remember the parts my mind and my brain long to forget. They are actively working against me, because they WANT me to forget. “Nothing to see here…move on.” So, this one last time, I am going to go back to the dark and scary places, write some of them down, and then do the forgetting. Maybe this part of the blog is just for me, to put what has happened into some kind of perspective. But please read along, anyway.

On Tuesday, October 30, I vaguely remember telling Kenny I was tired and was going to “go read my book” – code at our house for taking a nap. About 1:30, Kenny heard the dogs barking and howling – making noises he’d never heard. He ran in, and found me in a seizure – full on and in Technicolor.

He called an ambulance, but even now won’t tell me much about what happened. They raced me to the hospital, and started the treatment to make the seizures stop.

But they didn’t. I was having status epilepticus seizures – something to be avoided if you can. The mortality rate is something like 20-30%, depending on which scary website you read. Brain damage can start after 5 minutes.

Treatment in Tyler didn’t go well. Poor Kenny and Travis were visited by a priest, which was a lovely gesture from the hospital, but they say seeing the priest coming down the hall for them was enough to make their poor Protestant hearts stop.

The seizures continued, they put me in a coma, and by Thursday gave me two more days and started looking for options. Happily, some of my doctors were affiliated with a specialty hospital in Dallas. It’s the place you go when there’s nowhere else. You have to apply for admission, and I suppose you have to be circling the drain at a sufficient rate to be accepted.

Friday morning they helicoptered me to Dallas, part of my brain still seizing, me still in a coma, Kenny told this was a very rare condition. Somehow this figures. And I’m trying to spare you the details, I really am.

Doctors do not have any clue what will happen as they bring Cynthia to a conscious state. The brain may respond within a few hours, a few days, a few months, or.... and we don't even think about "or".

I see why Kenny is leery about sharing the details of these dark days. I have the advantage of having slept through this madness. He saw it all. He was there, making decisions that would ultimately save my life. He had to consider the possibility that we had run out of miracles.

I think it is harder to be the caregiver than to be the patient, especially in these grim early days. Worse yet is for family when they visit, having to be brave and think of encouraging things to say when it feels like a lie.

The next five days are carefully documented by St. Kenny. The attempts to get me out of the coma without another seizure, rashes, fevers, worries about the ventilator…the notes go on and on.

And it is peculiarly painful to me – mostly because the ones I love had to stand there and watch this drama unfold, not knowing how it would end.

But here are some random thoughts. This period is like the difference between “literature” and other kinds of writing. “Literature” is almost always dark, and there is virtually never a happy ending, at least in traditional terms. As soon as you put a happy ending on an otherwise dark story, it falls out of the literature category.

Propofol – the drug that keeps you in a coma and let Michael Jackson sleep through the night - is one hell of a dangerous drug. I am sorry for him, his doctor is an idiot and should still be in prison. During the long hours of my coma, Kenny calculated that I was getting in 24 hours what he got just to sleep through a night. Without breathing support. No wonder he died.

A specialty hospital is an amazing place, by all reports. Kenny calls the team that worked on me the Navy Seals of medicine. I’m actually sorry I missed it. In fact, some part of me wishes I could see some of what happened. But that’s silly and maybe it’s just as well I can’t.

But what I know is this: I didn’t wake until November 9. Between “reading a book” and opening my eyes, there is this dark emptiness. But just as I was waking up, I thought to myself, “this would be a great time for a Near Death Experience”.

And I swear to you, on everything I hold most dear, this is what happened:

In front of my eyes, as if I were looking at a stage, was a crowd of people. On my left was a group that stretched back as far as I could see…thousands of people who all knew me. At the front were my parents, both sets of grandparents, and a dear aunt and uncle. On my right were three very tall spirits, wearing cowls, very beautiful but with no faces. They let me know they weren’t human and had never been, but they were with me, too. As I watched, the spirits and my family talked about me – not whether or not my soul was in jeopardy, and not even about whether I would die. They were just visiting about me, and letting me know they were there. There are no words for the beauty.

I haven’t shared my experience with just anyone (until now) because it was so vivid and lovely. I haven’t started a quest to see whether NDEs are “real”…or looked for validation about whether or not I saw what I did. I haven’t even had any emotional stirrings one way or the other about it. It was just real, the same way a tree in your garden is real. It made me very happy.

I'll have a new brain tumor post in a little while. Now we're getting into the hard stuff, and I'm revisiting times that I had put away. The memories are there, but deep in storage. (Rather like the Ark in the first Indiana Jones movie. The best one, don't you think?)

Another Bonus Post!
By way of some explanation, in the late 70's I was an anchor and reporter at KAKE-TV in Wichita, KS. (Well, for that matter, I was the first female anchor in the state but that's another story for another time.) What I did love to do was find stories that no one else was covering, and so I tracked down a hog breeder who had found that putting heating pads under baby pigs made them grow faster. (They're not using calories to keep warm, don't you see. It turned out that this guy was VERY BIG in the world of hogs.) Perhaps we know why no one else was covering this story.

The Elephant in Kansas

One day, on my way to do a story about the largest artificially-inseminated hog herd in the world, I was distracted by an elephant.  On the access road to the freeway, a man was walking an elephant down the road.  I should have stopped but I didn’t want to be late to the hogs.

By the way, do you know how they artificially inseminate hogs?  Or did, in the late 1970s.  It seems that lady hogs have a very short period of fertility.  So they castrate a few male hogs as “teasers” who go into the pens of lady hogs.  They sniff around and when they find one in the mood, they mount her.  All of this action is being closely observed by the staff, rather like bouncers in a disco. 

They pull the lady pig out of the pack to be inseminated.  So far, nothing too strange about this process.  Labor intensive, but necessary. But here comes the part that needs to be considered.  They stick a catheter of sperm (special sperm, from very special breeder boars) into her cervix, and blow.  Yes, that’s right.  The staff member is blowing a straw of sperm into the lady pig with his very own mouth with a pretty short straw.  (It should be noted that the farmer told me his staff was very well paid, and I should think SO.)

Apparently this works well because this farmer had 25,000 beautiful pigs.  There are two other things worth noting.  All of these magnificent pigs came from three award-winning boars, who were the luckiest pigs in the world.  And here’s why – to collect their sperm, they were led to a fake lady pig (actually a 5 gallon lard can, covered with burlap, on four legs) where they would hump away until they would squirt their valuable stuff into a jar.  The collectors were the same guys who would ultimately blow it up the lady pigs.

These were very valuable boars, and very happy.  The farmer told me that when they were led into the shed where all this transpired, they would go right to the lard can-lady pig, mount her immediately, and get on with business.  They would live on forever, or as long as they could do it, in the equivalent of a horny pig’s dream.

And here is the second thing worth noting.  The farmer asked us to join them for lunch.  We had pork.

Speaking of animals:

The Day My Daddy Burned Down the Chicken House.

We had a chicken house at the edge of our property.  I remember it as fairly large but unattractive, made with random lumber and black tar paper.  There was a fence around it, and the chickens were free to get out and walk around. 

Our pointer dog, Duchess, would often sneak in and suck a few eggs.  All in, this was a bucolic setting except that it smelled and annoyed what few neighbors we had.  (There had been goats but they would get up on the roof and eat the tarpaper so they had to go.)

Two big, unexplainable events are stuck in my memories of the chicken house like a cocklebur in a sock.

First, there were two roosters that my mother considered to be rapists.  It would seem they were overly enthusiastic, or perhaps she just disapproved of roosters and their barnyard sex lives.  Either way, one day she’d had enough of their shenanigans.  She killed them, cleaned them, then put them in the pressure cooker.

When they were done, she opened the pressure cooker but, as she told the tale, she was “still mad at them” so she reset the pressure cooker, and cooked them again.  By now they were jellied roosters.  She took them outside, and poured them around the chicken yard so the hens could eat them.  And they did.

Here’s the second event.  One day my Daddy burned down the chicken house.  He said it was getting to be too much work and the foxes killed chickens and Duchess sucked eggs. It seemed futile, I suppose.

So one Saturday, when mother and Susan and I went shopping, he set fire to it.  We were coming home, and started to wonder where the big plume of black smoke was coming from.  Surely not from our house!  And yet, it was, sort of.  We lived in an unincorporated area then, so the city fire departments of two cities came to their city lines (actually just across the roads from us) and parked their trucks and watched.  Eventually it burned down, as buildings will do.

So, here’s the unexplainable thing.  (Just the one?) I never thought to ask my Dad why he burned it down, or chose that day.  Was it planned?  Spontaneous?  I would like to think that on that Saturday morning he just said to himself, “enough of this” and torched it.  Let that be a lesson to foxes, roosters, and egg-sucking dogs everywhere.