Parkinson’s Disease – THE WALL

I’m not really a risk-taker. I’m a dreamer. When I was a child, my Mom always said, “Kay, you have eyes bigger than your stomach!” That was her description of my propensity for taking more food than I could possibly eat at the Sunday buffet. I couldn’t help it if so many things looked so delicious! I honestly wanted to eat them all. It’s been a way of life for me, this seeing things that interest or challenge or intrigue, and going after them before really, honestly counting the cost.

The upside is that I’ve gotten to do some pretty cool stuff. My “bucket list” isn’t nearly as long as it might have been, and that’s not for lack of dreaming and scheming.   Since Parkinson’s diagnosis, DSC01192I’ve traveled half way across the United States via train, been to the top of Pike’s Peak, walked through an ancient cliff dwelling at the Mesa Verde, gone zip lining with a teacher colleague, cruised west cross the Caribbean to Mexico and back, ridden a Jamaican bobsled, swam with dolphins and stingrays, made Teacher of the Year, taken up my old photography hobby, moved into the digital age with a DSLR, and even won some photography competitions.

My attitude in recent years has been, “Take that, PD!” I thought I was getting away with it…until I slammed into The Wall on October 15. The day of surgery arrived on a crisp fall morning. My sons and husband escorted me into the surgical family waiting area where we were greeted by good friends who had arisen very early to be there with my family during surgery.   I reveled in the warmth of friends and family….blithely ignoring what was coming. I simply blocked out all the awful things that “might” happen, that I had listened to and read and signed for during the pre-op days… things that could change my life – change mepermanently. Forever.

I was fine until my husband left me as the halo arrived. I knew it was coming….but I had little concept of what it would feel like.   As the screws were drilled into my face and skull, the pressure was overwhelming, frightening. I was certain my skull was going to crack.   With some reassurance from those assisting, I realized fairly quickly that I was “getting use to it.”   But there was no doubt that I was no longer in control of my existence. I managed to stay upbeat through the CAT scan. On the lengthy ride to the operating room, I realized that by keeping my eyes shut I could not see strangers staring at the poor thing with her head locked into a cage.

And then, there we were in the OR… where things began to happen more quickly than I could absorb. I was still adjusting to sounds, smells and limited scope of vision when several masked men and women greeted me. There was no recognizing them, not even the neurosurgeon, without my glasses.   I thought ominously, “The inability to see will be the least of my worries today.”

In retrospect, that day is fragmented in my memory. Yet, there are details that stand out vividly, mainly unfamiliar, difficult emotions and thoughts for which I was not prepared. I could feel and hear the sound of them shaving part of my head, I could sense the pressure of the scalpel making the incisions, I could smell the burn as blood vessels were cauterized, and yes, I could hear the drill as they tested it before ….

Have you ever imagined a jetliner landing directly on your head? Have you ever used a jigsaw to cut through a board, all the way to the other side where the drill gets ragged because the two ends are vibrating?   How about an earthquake that is so loud you cannot hear or think of anything except the desire to run for your life!   It was the part I dreaded the most, that drill, that exposure of my brain. My Brain! Somewhere in that first hour, I decided that I truly had lost my mind. “What was I thinking?! Letting someone poke stuff into my brain! This is REAL, Kay! You are an idiot….”

I couldn’t feel the leads going in.   For those few moments, I had time to contemplate my hastiness in agreeing to this whole thing. And then, the testing of the right side began. The neurologist called out numbers, waiting for my responses, sometimes urgently reminding me that he needed to know what I was feeling. I struggled between the need to respond to the doctor’s questions and the terror of my body having no mind of its own, controlled by someone else who seemingly could command my movements at will. I wondered in confusion, “What if this is what I have to look forward to as the Parkinson’s progresses? Is it possible the symptoms really could get this bad? What if this doesn’t work, and I am left like this…I should have stayed in my classroom and left well enough alone…”

The prolonged lack of Parkinson’s Meds was taking its toll, and my body rebelled, dystonia seizing my legs until muscles were rigid and pummeling anything that got in the way. It felt like a full-blown panic attack. It would be weeks before I realized that even though I was awake, there were many drugs in my system – absolutely necessary for my health and survival – that clouded my thinking that day. But in the middle of that brain surgery, I was as lost to myself, as alone as I have ever felt.

By the time one side was finished, I was desperate to get out of there. But I was held captive, my head locked in a vise, my brain open to the world.   There were many people around me, a strong competent support staff who knew exactly what they were doing, but I felt alone, isolated, completely lost. The panic worsened in as the drill was cranked up again.   It didn’t help that I’d already been through the procedure….I knew the rest of the steps for the second side, and I knew none of them were pleasant. What I didn’t know was that the second side would take much less time than the first.

I had no choice whatsoever but to lie there and wait for the inevitable. During a brief moment of lucidity, I understood the wisdom of doing both sides at once.  In that moment came the realization that once freed, I would probably never agree to going through it again!

The rest of the surgery was a jumble.   At some point, I was given PD meds and put to sleep. I don’t know the sequence, but I do remember the headgear being removed, and sobs coming unbidden with the awareness that it was over.   There was a blissful waking from sleep in PACU, shadowed only by the realization that I had a one-on-one nurse, vigilantly watching all the monitors connected to my body. I wondered, vaguely, it something had gone wrong…

I felt like a failure. I’m not one given to panic. I don’t lose control in a crisis. Rather, I’m usually the one who maintains a level head, figures a way out of the situation, and quickly moves on.   This was different – I felt I had failed the doctors and myself. In my confusion and panic, I thought I had messed things up, that the leads might not been place correctly. And, I wondered why God had abandoned me so completely!  (It would be several weeks before I realized that the Surgical Team was very pleased with the lead placement and that I had tolerated the procedure well.)

The Wall of Reality was solid, brutally real, harsh in its presence. In my room, later in the day, again surrounded by family, I was thinking about far more than I could communicate. My speech was slurred and I could not get words hooked together correctly. I could think, but I could not express the confusion and darkness that I felt.   Parkinson’s, I had to finally admit, was my reality. Perhaps the worst of it was feeling like I had lost myself. Kay – the one who could always find a way out of tough situations, who always managed to find the positive side of things – seemed to have leaked out of those burr holes as the doctors drilled away.

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