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Saturday, February 04, 2012
Feature: February 2008
Shaken’ Not Stirred
A Sacramento author and Parkinson’s dark secrets
Story by Joel Davis
Author and former journalism professor Joel Davis was diagnosed with Parkinson’s disease at age 38. Since then, he’s finished his true-crime book “Justice Waits: The UC Davis Sweetheart Murders.” But it hasn’t been easy, including a medicine-induced month in two mental institutions, shock therapy and suicide watch. All that, and two brain surgeries soon followed in June 2004 and April 2007. Davis, now 45, shares his story with Comstock’s.
It was the third time it happened, but you never get used to it. The first time it was “friends” not knowing I had young-onset Parkinson’s disease — I had yet to come out of the closet — mocking a brave if awkward TV appearance by a trembling, mute Muhammad Ali.
The second time was a Sacramento County murder prosecutor. This man knew. Perhaps he momentarily forgot as he told me to take a hike. He nevertheless barked at me that I was too close to the victims to finish what is likely my life’s hallmark work, the true-crime book “Justice Waits: The UC Davis Sweetheart Murders.”
“Look at you,” he snarled. “You are too emotional. You are shaking!”
The third time — we’ll call it Mockery III — was presented during the fourth quarter of Super Bowl XL. This time it was friends of friends who didn’t know they were sitting next to a “PDer.” I can, if pressed, still hide it pretty well. Or at least as well as a trembling person who has access to couch cushions as camouflage can act as the public humility elevates the shaking. On comes an ad featuring a trembling, swaying PD poster boy Michael J. Fox. And on came the mockery by seemingly normal folk who perhaps had a few too many Super Bowl man sodas.
My story oozes irony. I can’t say that a healthy me — a less compassionate me, a me that I both pine for and resent — wouldn’t have been right there with them mocking Fox. I have met him and respect him for — as he put it in words that inspire me — coming out because “I need to show up for this.”
As a writer and retired college journalism instructor, I had to show up for this. At least after I could no longer hide this insidious disease with oversized shirts and ponchos while citing an old knee injury that even I thought was causing my gait.
The pre-Parkinson’s Joel Davis is not the Joel Davis I would recognize today. He has become more compassionate by default — more moody and outspoken. He has witnessed his brain changing dramatically while seeing his heart grow bigger. There has been a lot of drama along the way, including at least two suicide attempts and a medicine-induced month in two vastly different mental institutions. I’ve had electroconvulsive therapy that likely saved my life, two remarkable and very risky brain surgeries that have reduced physical symptoms and more pills than you can shake at a pharmacist.
Welcome to my brain. It functions on electricity, pills, two pacemaker-type implants and sheer stubbornness. My brain has Parkinson’s, and my brain has balls.
In addition to giving me bigger cojones, Parkinson’s has also made me much more sensitive, inspiring the best writing of my life. It has opened doors after it shut others. I have lots of new friends and a few ex-friends because of it, while somehow keeping a wonderful wife who has dealt with a tremendous amount of PD strife.
I have become the Tin Man at the end of the Yellow Brick Road by way of the Scarecrow at the start. Smaller brain, bigger heart, thicker skin ...
Parkinson’s attacks the brain, specifically robbing it of dopamine, which controls movement. I have met PDers as young as 17, thereby eliminating the need to feel sorry for myself as I have lived pretty large in my 45 years. Sometimes too large given the link between PD and compulsive behavior that has included everything from philandering to buying sprees.
But it was still devastating to hear the news at 38, especially because it was delivered the same week as Sept. 11 and the same week I was downsized from my dream job as a correspondent of a New York-based magazine. On losing my job and health the same week as our greatest natural tragedy: I am not at all a superstitious person, but when they say things happen in threes, I converted after this particular week.
Unlike cancer or diabetes, there is no X-ray or blood test to diagnose Parkinson’s. And being on the young side of an older person’s disease, the diagnosis came somewhere after a brain tumor and a weak muscle in my medical tests.
“Thanks for sending me this most interesting patient,” my first neurologist says in a note to my regular doctor after the MRI found no tumors. My regular doctor didn’t notice the tremor in my left arm during a physical until the “doorknob moment,” at which I told her as she was leaving: “Oh by the way, check out what happens when I lean on my left arm: Tremor City.”
Interesting patient. Whee!
At first I thought being interesting was interesting. But interesting patients, I have learned, drive the plots of such late-night TV shows as “House” and “Grey’s Anatomy.”
“Believe me, you do not want to be known as the interesting patient,” explains a doctor friend.
Interesting might not be a strong enough word. Because Parkinson’s is a brain disorder, the drugs that treat it have side effects that can be worse than the disease. “If you read the side effects, you wouldn’t take any of the drugs,” cracks a fellow PDer.
It is a Hobson’s choice: Take the drugs and alleviate some symptoms while likely worsening others — or continue to petrify. “The dose makes the poison,” said the Swiss medical practitioner and philosopher Paracelsus. I found out the hard way the prescience of his remark. Somewhere between the denial and depression part of the five stages of grief and the 30-plus pills a day, I quit paying close attention to the warning labels, though early on I did read — and mock — the part about “may cause hallucinations.”
They did. Big time. My hallucinations had hallucinations. The psychiatric problems are PD’s dirty secret.
And now, my dirty secret. It has taken me a long time to come to terms with it, and I agonized over whether to go public with it in this article and a forthcoming book. But in the tradition of much more talented writers who have gone off the deep end and/or were overly drunk or medicated, as well as in keeping others from making the many mistakes I made — I went full-on psychotic. Appropriately enough, it happened on Halloween 2003 and lasted a month — schizo, around the bend and nuttier than a PayDay bar.
Yep, I spent 30 days in two mental institutions because I became a bipolar, paranoid-schizophrenic — and every other label the shrinks came up with — thanks to a combination of Parkinson’s drugs and strange-but-true just-because-you-are-paranoid-doesn’t-mean-they-aren’t-out-to-get-you life circumstances. But mainly the drugs, an anti-Parkinson medication from the so-called dopamine agonist family that I have seen destroy lots of lives as it causes or brings out compulsive behaviors. Imagine acting out most, if not all, of your private thoughts, and you’ll get the idea.
I can only remember bits and pieces of what I call “The Lost Month,” perhaps a good thing as several people have told me I don’t want to remember it. Here’s what I do recall.
My hallucinations included frisking longtime friends whom I thought were wearing wires. I destroyed a hard drive and my most updated “Justice Waits” manuscript on my computer with a hammer because I strongly suspected I was being e-spied on (not a stretch, I got caught in the crossfire of territorial peeing among law enforcement during research for my book). Poodles being walked by neighbors became snarling pit bulls on chains wielded by cops. Telephone repairmen became spies. Medical personnel were all trying to get me. I cleaned out a bank account and stashed valuables with friends and relatives.
I badly twisted an ankle flying a kite at dusk in the neighborhood park, an experience my wife caught on film after tiring of trying to catch me. The photos inspired the title for my upcoming book, “Kite Flying at Night.”
Speaking of my poor wife — whom I also accused of spying on me — she finally had enough of my antics, doing the right thing, hauling me to the emergency room saying, “If you don’t take him, you will have to take me.” So one ambulance ride later, I was deposited in a county mental institution. Maybe discarded is a more apt term. A funny farm that did not have a good reputation, one that I and my family and friends soon discovered was more or less a holding pen for crazies, transients and substance abusers. Treatment? Puh-leeze. I have friends and family looking out for me. I pity those who don’t at this place.
Again, I do not recall much from this dreadful milieu other than it being like the bar scene from “Star Wars.” Naked people running around. Strange smells. Me roaming around at night banging on doors. Escape-minded patients trying to swipe “visitor” tags from two relatives. A box of Taco Bell tacos delivered by friends but eaten by the other loons as soon as I turned my back. Mostly indifferent or burned-out staff.
Oh, and at least two suicide attempts: One rather pathetic try in which I tried to suffocate myself with a pillowcase and drawstring, the other more serious that involved a noose and a shower. That one would have worked had I not been discovered by a fast-thinking someone. Sometimes I wish it had.
Thanks to some string-pulling — pun intended; humor is how I cope — I was soon transferred to a much better, private facility (where they actually try to treat you) and placed on 24-hour suicide watch.
Again, I don’t remember much. A few years after The Lost Month, I did — after cutting through some red tape and paying around $100 — retrieve the notes from my stay and was almost afraid to look at them. But they contain mostly mundane chart stuff such as, “Patient went to the bathroom at 4:23 a.m.” There wasn’t so much in the way of the narrative I so desperately sought.
There are some funny, ironic bits, however, such as one nurse noting, “Patient has grand delusions about a book he claims to be writing that may help solve an infamous homicide.”
Ahem.
And, my personal favorite from a suicide watcher who stayed on me like medical paparazzi, “Patient woke up and said, ‘How can I miss you if you won’t go away?’”
So, the longest, most traumatic, agonizing month of my life compressed into fragments of memories I can only now relive thanks to my own curiosity and the healing power of critical distance.
What saved me was, well, electricity. And this is the part of my story that tends to clear the room.
As a last resort that divided my friends and family, I had electroconvulsive therapy — a lot of it. Enough to probably light up Galt for a night or two.
Despite its dark, sci-fi connotations, ECT saved my life at a time I was trying hard to end it.
I am sure there is a more scientific explanation. All I know is that the little jolts I got up to three times a week — after they give you a calmness shot and put you under — essentially reset my internal hard drive.
The treatments made for a change so dramatic that I became the poster boy for ECT. “I want what he got,” fellow psych-center inhabitants were known to say after seeing me transform back into my old self — a snarky, yet confused, individual mingling with the others and no longer a disheveled, delusional paranoid frisking friends or family.
I went from a morose, unkempt guy in a robe working jigsaw puzzles to the old me, working the New York Times Crossword Puzzle after shaving, bathing and dressing.
ECT was so effective, in fact, that it cleared my memory of events before, during and after treatment. It was a bit too effective: I had to beg out of treatments after becoming a regular as it was really messing with my memory. Regardless, it worked. To the point where I remember very little about 2003 and the surrounding years.
There’s a funny thing about all this psychiatric trauma. While I suffer from depression like just about every other PDer, I have not had anything close to a psychiatric setback before or since I took the one particular Parkinson’s med. By the way, this med is now subject to a class-action lawsuit by others who have also tripped their nut on it, a med that has shamelessly been repositioned by a big pharmaceutical company as a treatment for restless leg syndrome.
After your brain has been shocked, what’s a few drills boring into it among friends? Thanks to some neurologists who believed in me despite The Lost Month, I pushed for and received deep-brain-stimulation surgery, a revolutionary PD surgery performed while awake. It has done wonders for restoring my movement — think Tin Man getting painfully oiled. Yep, I’ve had a drill spin in my noggin while awake. DBS allowed me to finish my first book and be foolish enough to attempt a second; it allowed me to appreciate pain; and it allowed me to do a lot of things, including showing up a little longer.
It has also allowed me to live in the moment more. I have cheated death so many times I no longer fear it.
I get my spirituality from many sources, everything from Socrates to baseball, which is what I thought about as the surgeon’s bored a quarter-sized hole in my head. While others prayed as the diamond-tip drill turned skull into dust, I made out baseball lineups.
In fact, it is a quote from the late baseball sage Dan Quisenberry, the wacky and very effective relief pitcher who died of brain cancer at 45, that often sustains me. During his final days, Quisenberry was asked, “Do you ever say, ‘Why me?’” And he’d reply, “No! Why not me? I’ve had a lot of blessings in life.”
Why not me, indeed.
