Normally I’m pretty good about observing important anniversaries (never forget a birthday or my wedding anniversary) but yesterday one almost slipped by me.   Which is surprising, since I literally can’t get it out of my head.

Yesterday, at about 10:00 or so in the morning, was exactly five years since I had electrodes installed in my head as the first part of my Deep Brain Stimulator (DBS) procedure.  I woke up in an operating room  in Northwest Memorial Hospital in Chicago with my neurosurgeon, the amazing Dr. R., literally in my head, listening to the sound of my brainwaves amplified on what looked like a pretty impressive sound system that played nothing but static.  I had to be awake as Dr. R.’s team talked to me and bent my elbow and listened to the sounds of the static to make sure they were accessing the correct parts of my brain.  Every now and then, Dr. R would turn a knob or something and the static would get louder and my leg would start to shake.  I’ve chronicled the experience in greater detail previously here:  https://djgourdoux.com/2012/01/23/happy-deep-brain-day/

This was me after the procedure:

When they were complete,  Dr. R. visited my wife in the waiting room and handed her this device,

saying, “here’s the remote control to your husband.”

It was two weeks later that Dr. R. completed part two, the second  surgery, while I was asleep, when he installed a neuro-transmitter in my chest and ran the wires from it up my neck and to the electrodes installed in part one.   It’d be about a month later before my new Movement Disorders Specialist, Dr. Z, configured and turned on the transmitter, programming it to send impulses to my brain to trick it into thinking it’s getting the dopamine that Parkinson’s has taken away.  Since then Dr. Z has taken excellent care of me, tweaking and adjusting the settings of the transmitter according to what I am experiencing at the time.

About a year ago, Dr. R. was back, to perform a simple, out-patient procedure to replace my transmitter’s old battery with the new one.  Once again, I was awake and lucid as Dr. R and his team went about their business, answering Dr. R’s trivia questions as he played classic rock on the sound system, correctly identifying Ringo Starr as the drummer on Tom Petty’s “I Won’t Back Down.”  They must have had me on some pretty good happy anesthetic, because I remember enthusiastically singing along to that and other songs, which the two other people in the world who have ever heard me sing know I only do when under the influence of extreme amounts of alcohol , and that these two people carry with them deep emotional and psychological scars from the experience.  So my apologies to those in the operating room who had to suffer so – may your therapy be swift and effective.

Five years later I know what DBS has and hasn’t done for me.  It was never intended to be a cure for Parkinson’s, and it hasn’t alleviated the need for medications.  I still wear on and off, just less frequently and to a lesser degree than before.  There have been side effects, such as impaired speech and handwriting and balance; these are adjustable by changing the settings on my “remote control” device.  Essentially, if I turn the voltage down, the side effects are minimized while the wearing off periods increase in frequency and severity, turn the voltage up, and the peaks and valleys of the meds cycle is largely flattened out, while the side effects worsen.  I’ve learned how to balance these, and there should be sufficient voltage capacity and tweaking that Dr. Z can do to effectively manage these symptoms for a long time, even as the disease progresses.

Last October, I participated in a three day clinical study designed for PD patients with DBS installed.  For parts of the study, I had to go varying times with the transmitter turned off, and for most of these times, my PD symptoms were unbearable.  It served as a sobering reminder of what life would be like without having had this wonderful chunk of hardware installed in me.

“Gentlemen, we can rebuild him – we have the technology.”  Aside from the occasional involuntary hop whenever the toaster pops, or the overwhelming urge to walk backwards when I hear the beeps from nearby construction sites, my DBS experience has been overwhelmingly positive.  I want to thank the incredible team of doctors and specialists and nurses at Northwest Memorial, in particular Dr. Z. and Dr. R., for the care and attention they have devoted to me.  I am lucky and blessed that my experience with this rotten disease is navigated by such brilliant and good people.

(I wrote this over the span of a couple of dark nights about three and a half years ago)

When I was a kid, as I lay in the hushed dark before sleep, I’d wait for the comforting sound of the furnace blowing warm air through floor vents, or for the familiar rumbling of a train in the distance. If I was lucky and tired enough, one of these sounds would come to me, and I’d fall asleep before they reached their conclusion.  If not, they’d be replaced by the murmuring voices of the nocturnal people who came to life in the silence of the night. From my bed I could hear them, unseen and distant, from under the floorboards and from inside the impenetrable blackness. I could never make out what they were saying, but I knew it was something dark and mysterious.

I didn’t like the voices. I’d pull the blankets up over my head and shut my eyes so I wouldn’t see any of them. As I listened, I’d convince myself that if I were to pull back the covers and open my eyes, they’d be there, standing motionless in the dark in my room, next to my bed, waiting for me to see them, and then they’d know, they’d know that I hear them, and neither they nor I could pretend the other didn’t exist anymore.

The voices would start out as a barely audible whisper, coming from the other end of the house. Uninterrupted by the sound of the furnace or a distant train, they’d gradually get stronger, from a soft murmur to a dull drone, steadily getting closer and louder, until they were in my room, above and around me. What syllables I could make out sounded like a strange and ancient foreign language, like they were speaking in tongues.

Eventually I’d fall asleep and the voices would be forgotten until the next night. This went on for a few years until I outgrew them and learned to put a chain on my imagination, until I learned to distinguish between the real and the unreal.

                                                            . . .

September 1981: Driving south on I-94 in my 1978 Chevy Nova, already rusting out from the big dent in the rear passenger side panel, with the setting sun painting the western sky shades of red and pink, I pass County Line road, highway KR; then highway E, before taking the off-ramp on Highway 142 and heading east toward Kenosha. I make my way to and then through the intersection with Green Bay Road, through the lights on 39^th and 30^th Avenue, until the red light forces me to stop and wait for the green left turn signal on the intersection with 22^nd Avenue.  But I can’t wait; I haven’t been able to wait for over the past hour, from the time the last delivery truck finally pulled into the Open Kitchens loading dock off of Highway 20 in Racine. I couldn’t wait for that stupid truck to finally get in, and I couldn’t wait to finish unloading it, and I can’t wait now, as the left turn green arrow finally comes on. I make my turn, and then, as I turn left on 43^rd street, the clock on the dashboard and the vanishing pink rays of twilight in the west and the headlights of the oncoming traffic and the streetlights that came on at some point between 39^th and 22^nd avenue all tell me it is about 7:00, and that September is nearly over.

We’ve been married now for about a month and a half, and she is waiting for me, like she is every night, and when I finish climbing the back stairs to our apartment and open the door, she’ll be there, with that indestructible smile and her open arms, and we’ll embrace. I feel a smile of my own form on my face. I am only 22 years old, but as my heart pounds out the exhilarating anticipation of coming home to her, I wonder if I can really be this deliriously happy, and I am aware of how ridiculously innocent and corny our love is, of how completely lost in her I have become, and I don’t care, because no matter how hard the cynic in me tries to point out how whipped I have become, I know it is real, more real than anything I’ve ever felt before, more real than the darkness, the loneliness,  the hunger, and the aching ever were.

. . .

March 18, 2011: It’s been a crazy day, on the phone with company lawyers and retrieving data for hours, making sure the test and quality environments are nailed down in time for UAT to begin on Monday, and that we have a strategy for implementing the vendor patches for the IRT application. At about 3:30, suddenly everything falls into place, all the fires are extinguished, and I take a breath for the first time all day. I clear my mind and read through those e-mails I haven’t had a chance to yet, and I feel myself relaxing. It is near the end of the day, but more than that, it is Friday.

Next thing I know, it’s a quarter past five.  I’m feeling pretty good, and I decide, with the office almost empty now, that it’s a good time to pack up some of my things. I go about gathering the old mementos, books, and knick knacks I’ve accumulated over the past almost 13 years. I go through old files and photographs. I don’t feel a lot of emotion – no sadness, no loss, no pain – rather I feel the warm and pleasant tug of nostalgia. I make a couple of trips out to my car, and I tell myself, I’m getting down to it, in a few days I won’t be seeing any of this anymore.   I won’t be walking up this stairwell to the back entrance, I won’t see the labyrinth of first floor cubicles, I won’t see the late afternoon sunlight on the parking lot and the pond. I tell myself this is all ending, I should be feeling stronger emotions, but I don’t. I can’t work myself into an emotional tizzy no matter how hard I try. Even though I have only four working days left, and even though this is the last Friday, somehow it still doesn’t seem real.

. . .-

August 1, 2011:  I take inventory of my physical limitations. My handwriting is no longer legible. My speech has deteriorated to the point that unless I am reading from a script and intensely concentrating, people have difficulty understanding me. When I am stressed or tired, tremors in my right hand and arm frequently occur, making it temporarily impossible to type on my keyboard or navigate a mouse. My meds are wearing off now about every four hours, and for about an hour, or about a quarter of the time, I suffer from the same stiffness and rigidity that occupied about half of my time before my DBS surgery.  I sleep on an average of four to six hours a night, still better than before the DBS but not the seven hours I was consistently getting a year ago.  I am off of work now, and take about an hour’s nap every afternoon.  I often stay up late, and do most of my writing at night, but I am always up before my wife leaves for work in the morning.

What the future holds, despite my constant speculation and conjecture, is beyond my ability to fully grasp.  I appreciate this, because I know that eventually it is going to get real bad.  When I try to imagine what it will be like, I try to imagine myself trapped inside a marble statue, unable to move or speak, and I can never really get myself there.  When my meds wear off and my living rigor mortis starts to set in is when I come closest to getting it, but even that is always temporary, and I can’t wrap my head around what it will be like when it becomes permanent, when the off periods finally overtake and eliminate the on periods, and what it will be like when the good days are all spent and gone.

I’ve been aware, maybe too aware, of the limited number of good days still left, and I’ve made many pledges and promises about how I’d spend them. I’ve tried my best to honor these pledges, but old habits are hard to break, especially when the old habit is life itself.  Life remains about 80% routine and tedium, the same routine and tedium that it’s always been.  It’s true that there is beauty and wonder in that tedium, and it’s true I have been able to see that more frequently since my diagnosis, but the nature of tedium is such that it just occurs, and that’s how it has to be, because it’s the tedium that gets us from day to day, and if we were to always stop and savor and celebrate the miracles in it all, well, we’d never get a damn thing done.

Now I am just a few months shy of my 53^rd birthday, and it’s been over four months since I stopped working. Tonight I’m thinking about those invisible nighttime voices I heard when I was a kid. I write them off as the product of a child’s overactive imagination.

But if those voices weren’t real, I ask myself, what else have I imagined? What is real?  Did I really have a career as an I.T. Manager? Were all of those projects and deadlines and all that work and stress and all the triumphs and failures real? Or did I imagine it all? My wife is upstairs sleeping. Considering the mathematics of infinite time and space, did I really meet and love and marry my perfect soul mate? And she loved me, too? This is all getting pretty far fetched. The odds are incalculable.

Maybe Parkinson’s is the only thing that is real. Maybe in fact the thing I can’t imagine, the eventual imprisonment of my mind and soul in the statue my body will become, has already happened, and maybe everything I’ve experienced has occurred within my imagination. Maybe those voices I heard when I was a kid were the last echoes of the real, outside world, and maybe everything else, all the pain and suffering, all the love and beauty, the incredible and the trivial, has taken place inside my head, a rationalized universe of my own creation to get me through the nightmare that is reality. This would explain the combination of the unlikely and unreal that has been my life so far.

Maybe beyond the horizons of this world, beyond the walls of infinity, a catatonic middle aged man sits alone in a wheelchair in the dusty corner of an institution for the insane and demented. Doctors and nurses shine bright lights in his eye, and see no activity, no hint of recognition. But a flashlight can’t illuminate the universe, or the infinity that lies behind and beyond those eyes.

In the end I’ll have no choice but to let Parkinson’s take me wherever it will take me. As it progresses, as I deteriorate, all I am and all I know will fade away, and I will be taken beyond – beyond the physical, beyond the emotional, beyond the boundaries of sanity and imagination, beyond death.

And when I am taken away from my friends, my family, and especially my wife, I will be taken beyond this Heaven, real or imagined, that I have been blessed to spend all my days in.