Parking Signs/Outside the Pleasure Dome
BANG! BANG! BANG!
It’s not the kind of sound you want to hear from machinery that encircles your head. I’m grateful when it shudders and suddenly goes silent, but… is the scanner broken? I’m lying on my back, half-inside a giant donut; my imagination conjures a torpedo in a launch tube, or Spock’s coffin in Star Trek II, about to be shot into space. Even with the earplugs the MRI technician’s given me, the sound the scanner generates—like jackhammers pounding away inches from each ear—is deafening.
All this, I’m thinking, just to prove it’s NOT a brain tumor.
Earlier, before they called me into the MRI “suite,” I’d come up with a plan to distract myself from the anticipated unpleasantness by reciting Coleridge’s Kubla Khan. I memorized the poem forty-five years ago, in the twelfth grade, and it’s a point of pride—and evidence, to me, that there’s nothing wrong with my memory—that I can still recite it perfectly:
A stately pleasure-dome decree:
Where Alph, the sacred river, ran
Through caverns measureless to man
Down to a sunless sea….
I’d heard stories from others about the panic-inducing claustrophobia of the MRI tube, but no one had bothered to mention the deafening noise—noise that chases the oxygen from the room and makes me dizzy, even while I’m lying down.
Through the speakers in the part of the apparatus near my head, the voice of the technician comes to my ears like a radio transmission from an alien planet: remote, thin, awash with white noise. “You’re doing fine. This next one will last four minutes.”
My heart sinks. There’s more?
I’ve been warned to stay still, which of course only intensifies my urge to squirm and writhe like a two-year-old. The previous scan lasted two minutes that seemed like twenty. Can I manage twice that? Before I can decide, the machine starts up again. Now it resembles the sound the alien spaceships make in the movie version of War of the Worlds.
…Down to a sunless sea, down to a sunless sea….
What comes next?
With my hands and feet strapped down, I’m a specimen pinned to the table for study. I imagine (in the darkness behind the blindfold and a protective face shield) universes being created and destroyed, towers welded together, then collapsing. Terrible beasts—crosses between lions and minotaurs—rampage and roar. Only the fact that I can see nothing protects me from the havoc that’s been unleashed around me. That, and the on-off voice of the technician traveling to me on slow waves across empty space.
Another sudden silence from the machine.
"We’re almost done," the technician says. “The next is the longest one—seven minutes, okay?”
I get it, I’m thinking. I’m being tortured. He’s mistaken me for someone else, some terrorist, maybe. If he’d only ask me a question, I’d confess and this could be over.
The machine revs again. Now I’m in the middle of a drumming circle, the sound amplified a thousand times. The drums are steel; the drumsticks are ball-peen hammers the size of sledges. My fingers fiddle with the panic switch the technician put in my hands at the beginning of the session: a rubber bulb trailing a long cord. I tell myself I don’t need it, but a primitive voice rising from my fear center keeps screaming SQUEEZE THE DAMN SWITCH! SQUEEZE IT NOW! NOW! NOW! NOW!
Ba-BOOM, ba-BOOM, ba-BOOM, ba-BOOM go the drums, and their plodding stresses give me a pathway back into Coleridge’s iambic tetrameter:
With walls and towers were girdled round…
Saliva begins to pool at the back of my throat. I warn myself not to try to swallow, afraid that, in this unnatural position, my head will jerk and ruin the scan and we’ll have to start over. On the other hand, I’m convinced I’m about to drown in my own spit.
Where blossomed many an incense-bearing tree…
That’s when a question worms its way into my thoughts:
How am I going to write about this?
I want to laugh out loud. In the midst of everything that’s going on, can that really be the most important issue? Technicians’ reassurances, breathing exercises, Yoga, Valium, ancient poetry—all, it turns out, are for naught. It’s the question of how I’ll describe this experience to a reader that finally consumes and transports me.
And that’s when I realize that, at least for now, everything is going to be all right.
So, if it’s not a brain tumor, what is it that’s causing me to stagger around like a drunk?
Six Advantages to Having Parkinson’s Disease (in the style of the website buzzfeed.com)
2. Lonely? Need buddies to party with? Take along your imaginary friends
3. Work the lyrics for “I Won’t Dance (Don’t Ask Me)” into your conversations (“My head won't let my feet do things that they want to do….”)
4. Take time to ponder the many implications of the phrase “Lifetime Warranty”
5. You’ll never wear out your favorite shoes
6. It’s incurable, so you don’t have to bother worrying about that
My sister, only 13 months older than I, died from the effects of dementia in 2012. We were very close, even while living three thousand miles apart, but I only saw her twice during her illness, which seemed to progress at the speed of light. She was smart, adventurous, beautiful. Yet the last time I saw her, she was unable to put together a complete sentence. I worried whether her sudden illness and rapid decline should raise concerns about my own health, but clung to the facts that, unlike Rebecca, I had never been a heavy drinker or drug user.
No one knows exactly why certain people develop Parkinson’s, which is caused by the die-off of dopamine-producing neurons in the brain. One current theory proposes that it results from a combination of genetic mutation and exposure to certain types of chemicals. Another says it’s a result of taking a blow to the head. Still others blame wheat gluten, red meat, and cow’s milk. I don’t know which, if any, of these are the culprit, but I do know this: my family—at least on my mother’s side—has a wretched legacy when it comes to brain disorders. A way to measure the effects of Alzheimer’s disease was established in 1968, just in time for it to be listed as the cause of my grandmother’s death. One of her sons and a daughter (my uncle and aunt) followed in her footsteps. My mother died after a three-year struggle with ALS, which, like Alzheimer’s and Parkinson’s, is a neurodegenerative disease.
My life is over.
That’s the first thing most people think when they’re diagnosed with Parkinson’s disease. It’s hard to ignore words like “degenerative,” “progressive,” and “incurable,” especially when they’re linked to the phrase “brain disorder.” We’ve grown accustomed to living charmed lives, many of us—enjoying the fantasy that our gym-worked bodies will last forever or, if they don’t, that medical science will be able to fix them. Despite the constant handwringing over obesity rates, heart disease, and diabetes, we hear every other day about a 70-year-old who’s just biked cross-country to raise money for some charity, or an 84-year-old who’s launching a new career designing high-end wallpaper. For those who can remain healthy, the future is still full of potential. We may outgrow the youthful belief in our own indestructibility, but aren’t we the generation that, better late than never, is supposed to continually reinvent ourselves and continue to eke meaning out of our lives into our third or fourth childhood?
That was my expectation three years ago. At age 60, I chafed under the “senior” designation some wanted to slap on me, but secretly enjoyed the discounts at restaurants and amusement parks. I was strong and healthy (or so I thought), with good wits and an ambitious heart, taking my time to identify new worlds to conquer. I retired early, took a writing class, and actually began to have some modest success as an author. I got certified as a Personal Trainer, just for the heck of it. I made plans to hike the mountain trails I’d never had time for. I moved from one coast to the other. I began to think about going back to Europe for an extended stay. Then, gradually, I began to notice that I couldn’t taste my food and was having trouble swallowing. I felt exhausted all the time. I couldn’t walk in a straight line. A trip down my hall at home felt like walking down the aisle of an airplane being tossed by turbulence. In the gym, my left side felt weak; my time on the cross-trainer was torture.
Since my diagnosis, every account I read about a high-achieving oldster triggers a stab of resentment. Why them and not me? I’m pricked by the arrows of jealousy of others’ accomplishments, like some modern version of St. Sebastian, but I bleed anger rather than blood. I know I won’t be riding my bike across the country at age seventy, or even next year. I may not live to age seventy. That was always the case, of course; but until now I didn’t have a specific reason to worry about it. In my mind, I had all the time in the world. That’s the thing that gets to me: the untimeliness of it all. It’s like living the plot of a Lifetime tearjerker.
Parkinson’s can make you doubt everything you see, hear, think, and feel. It undermines your self-confidence, your belief in the integrity of your own actions. When some household object ends up in the wrong place, you wonder guiltily whether you’re the one who put it there, even though you can’t remember touching it. Joints and muscles gradually become stiffer, making it difficult to hold a fork, brush your teeth, or turn over in bed. Many of us have seen the telltale tremor in a stranger’s hand, but tremor can also occur in feet, arms, legs, jaw, or tongue, or internally, invisibly. Hoarseness and difficulty swallowing are often early symptoms. Poor balance increases the risk of falls, as do environmental hazards such as dim lighting and uneven surfaces. You trip over throw rugs. You sweat excessively, drool, and develop skin conditions. Insomnia is common, as is “active dreaming” (thrashing about in your sleep) and daytime exhaustion. Profound exhaustion. Debilitating exhaustion. I know this from personal experience.
But it’s the cognitive changes—memory loss, alterations in personality, hallucinations—that I dread most. What are we if not a lifelong accumulation of our memories, experiences, and friendships? Who am I when those are no longer available to me, and disappear one by one, day by day? Life becomes a nightmare of self-questioning and diminished confidence. Is the dark silhouette I catch out of the corner of my eye, slipping around the corner of the garage, really there, or is it a hallucination? Is the garbled question from my spouse—“Did you put the peanuts in the laundry basket?”—really what he said? Can I recall why I came into a room without facing the shame of retracing my steps to see if something along the route will remind me of my purpose? At times, I adopt silence as the wisest tack, not wanting to embarrass myself or others with “crazy” questions, thereby suffering another loss through my silence. And what about the dream of being a writer? Can I still write something that makes sense to a reader? And if so, for how long?
Parkinson’s experts will tell you that the disease is not fatal. Technically true, perhaps; instead, it creates an environment in which other things can kill you more easily. Brain cells that generate messages to the rest of the nervous system die off, making it impossible for the body’s machinery to function properly. Eventually, you’re dispatched by a failure of mechanics: aspiration pneumonia or choking caused by the inability to swallow properly, or fatal falls that result from poor balance. Doctors also tell their patients that, on average, they have the same life expectancy as the general population. That statement may forestall an unpleasant conversation, but I doubt it’s true.
The federal government has a lot of data on aging and life expectancy. The Social Security Administration’s calculations say that the average life expectancy for all males currently age 65 is 88.4. The Centers for Disease Control breaks it out by race and state of residence in addition to age and gender, and predicts that a 65-year-old white male Californian will live 22 more years (to age 87), 15.5 of them healthy years. It’s difficult to make a meaningful comparison to those with Parkinson’s, partly because there have been few investigations. A Norwegian study, published in 2012, followed 230 Parkinson’s patients of various ages for 12 years and calculated an average life expectancy of 81 years. But of the patients studied, only 19 were still alive at the study’s 12-year mark. A 2002 study by doctors at Washington University in St. Louis found that only a third of Parkinson’s patients of various ages were alive six years after diagnosis. If I were in the two-thirds contingent, that would mean I would be dead at age 69, a far cry from 84 or 87.
Who wants to live out the modern version of unhealthy old age, anyway? Bedridden, demented, in pain, forced to watch daytime television. On the other hand, I’m amazed by people like physicist Stephen Hawking, who’s lived for 51 years (and written eight books) while suffering from ALS, the same disease that killed my mother in three. Of course, as a world-famous scientist, he has access to a lot more resources than most of us, but all the technical and human assistance in the world can’t alone make life worth living. There has to be something else, and I suspect the something else is that he still possesses his full mental powers. He can reason, remember, converse, create. He can express himself.
Parkinson’s is a different disease. The odds that a person with Parkinson’s will develop cognitive impairment are fifty-fifty, as they are for ALS. But the impairments with ALS are much, much milder, virtually invisible to the casual observer. With Parkinson’s, the effects are more severe, similar to those of Alzheimer’s disease. They result in what I call "the slow disappearance."
There have been quite a few famous people who’ve had Parkinson’s Disease. The earliest one I know of is Kathryn Hepburn; the latest (revealed posthumously) is Robin Williams. But there are tens of thousands of anonymous sufferers for every well-publicized case, people who struggle every day to maintain their ability to walk, eat, sleep, speak, think constructively. I am one of them.
Some argue that there is no such thing as a good way to die; however it happens, you’re dead. I’ve seen a partner die of AIDS, a mother die of ALS, a father from congestive heart failure, a stepmother of pulmonary hypertension; these examples validate that perception. But why couldn’t I have a heart attack in the middle of the night? I don’t really even care at what age. Why not tonight, when I’ve just eaten a delicious meal at the end of a beautiful summer's day, am in full possession of my faculties and in my spouse’s arms, rather than six or ten years hence after having suffered the personality-robbing progression of Parkinson’s? The date isn’t important, as long as it spares me and my loved ones as much suffering as possible. That’s the important thing.
But in case that doesn’t happen, in case I end up feeling my history, which is what makes me me, draining away, doing the slow disappearance, I’ve made a list of the things I hope others will remember for me.
500 Things I Don’t Want to Forget
2. I was the only sibling that wasn’t allowed to hold my newborn baby brother when we came home from his christening.
3. We used to see Roy Rogers and Dale Evans in church every Sunday.
4. When I was six, my favorite TV show was Zorro; when I grew older I liked The Honeymooners and George Burns and Gracie Allen.
5. I used to be a bully: at age seven, after we moved to San Diego, I got into a rock fight after school and one kid managed to bean me squarely on the head, causing blood to gush all over my new pale blue corduroy jacket; after that, I never bullied anyone again.
6. When I was eleven, I was molested by the swimming counselor at Boy Scout camp.
7. Concord Grape was my favorite kind of jelly, but I only used ketchup on my peanut butter sandwiches.
8. My family went on a camping vacation every summer, and in 1964 we drove from California to New York to go to the World’s Fair.
9. I hitchhiked through Europe with my sister for three months during the summer between my freshman and sophomore years of college; one night, while we slept in our tent in a campground near Hamburg, Germany, someone stole everything we had.
10. I never cut my fingernails until a couple of months after I graduated from high school; up to that point, I bit and tore them under the pressure at school of being what today would be called a nerd.
11. I didn’t get drafted into the Vietnam War because I drew a high lottery number in 1970 and gave up my student deferment for a year, knowing it was unlikely I would be called up.
12. My favorite TV show in the late 60s/early 70s was Rowan & Martin’s Laugh-In.
13. In my fourth year of college, I changed my undergraduate major from history, economics, and political science to design for theatre.
14. My father, born and raised in Spring Valley, New York, moved three thousand miles to get away from his family. I moved three thousand miles back the other way (to Boston) for the same reason and to attend graduate school; after grad school, I moved to New York City.
15. My siblings and I climbed Mt. Whitney together while we were all in California for my dad’s second wedding.
16. I met my first lover after five years in New York.
17. Until I met Ralph, I hadn’t taken a vacation in ten years; during the next five years we travelled together to Puerto Rico, St. Maarten, The Dominican Republic, Key West, California (for him to meet my family), Hawaii, and Grand Cayman.
18. The last job I had in the New York theatre was as a milliner for Franco Zeffirelli’s 1984 production of Tosca at the Met; my name appeared in the program for the next twenty-five years every time the company revived the production, but my total contribution had been to make a dozen nun’s wimples for the chorus in Act 1.
19. Weary of being poor, I managed to get a job at Merrill Lynch in 1985 as a programmer trainee, shortly became a manager, and, for the next 23 years, made it my life’s work to shepherd the careers of my employees; I left Merrill as a Director, managing a group of 150 employees and consultants.
20. Ralph and I exchanged rings on Christmas Day, 1989. He died of AIDS on December seventh the following year.
21. As part of her campaign for the US Senate, Hillary Clinton marched in the 2000 NYC Gay Rights Parade; when she and her secret service contingent passed my viewing spot at 34th Street I stepped off the curb and fell in behind her, walking the rest of the way down Fifth Avenue to the Village amid constant cheers from the crowd.
22. I met my husband in 2000 through an Internet ad on Love@AOL; in 2003 we entered a Vermont Civil Union even though it had no legal standing in New Jersey, where we lived.
23. In 2013, once again living in California, I married John Castell at the San Diego County Administration Building on the tenth anniversary of our Civil Union, a few days after the US Supreme Court declined to review a lower court ruling that California’s prohibition of gay marriage violated the US constitution.
And so on. A life in bullet points.
How many, even now, are lost? Here's something funny: at times I can’t even remember the name of the disease that afflicts me. They say the brain can develop new pathways when the old ones are destroyed, so I've become diligent about creating mnemonic devices whenever I have trouble remembering something. "Parking Signs," for some reason, comes much more easily to mind than "Parkinson's," and that's how I remember the name of my disease. Still, such tricks are only a stopgap. I'm terrified by the idea that eventually, I may forget everything that's ever happened to me, everything that's made my life worthwhile.
Memory Games: A Story
"C'mon, what was her name?" Danny says.
He’s staring at me with that lost look—lips puckered, eyes darting about. It’s a look I’ve grown accustomed to over—what’s it been now, years?—as his spotty memory has developed gradually larger holes.
"You know—the one who sings 'Broken Glass.'"
I breathe through my own moment of panic; I always feel it now whenever anyone asks me about a name. I try to concentrate, but the parade of people shuffling around the day room is distracting, annoying. Why can’t they sit down and shut up? Jabber, jabber, jabber, talking to themselves. I can’t think….
Poor Danny. How can anyone stand to live in this place?
Wait…. This is weird.... For some reason, I already have a moronic divorce set up for this one. “Moronic divorces.” That’s what I call the connections I make to help me remember something, especially names. I’ve tried to teach Danny how to do it, but I guess he thinks it’s easier to just ask me every time he needs to.
This is the way it works: “Walking on Broken Glass” = broken crystal = Lenox crystal.
“You mean Annie Lennox?” I say to Danny.
His features relax.
“Yeah, that’s her. Annie Lennox.”
“What about her?”
“I don’t know. You’re the one who brought her up.”
“No, I didn’t.”
Or did I? If I hadn’t already been thinking about her why would I have a divorce ready?
The plastic upholstery squeaks as Danny sinks lower in his armchair, going into sulking mode.
“You always do that to me,” he says. “You always turn things around, like I’m the one that’s losing it.”
I turn back to the TV screen, where Turner Classic Movies is showing George Cukor’s excellent 1939 film, The Women. The actress playing Mary Haines is doing that tearjerker speech where she tells her young daughter that she’s getting a divorce, but now I can’t get the image of Annie Lennox out of my head—her with that bright orange, close-cropped haircut she had on the cover of the Touch LP. It’s funny. Annie’s hairstyle must have seemed as outré in 1983 as this actress’s was in 1939: mannish, aggressive. What’s her name, again?
I stop short and steal a glance at Danny. He appears to have forgotten his sulk, is back to watching the movie. I have a minute to work this one out.
But I don’t need a minute. When I think about it, this one is easy, like this:
Annie Lennox hairstyle = abnormal shearing = Norma Shearer.
“I love Norma Shearer in this role,” I say.
“THAT’S the name I was looking for,” Danny replies, satisfied.
I love that guy. He never remembers an argument.
“Hey, Danny Boy, I hate to say it but I’m gonna have to go. I’m a little tired, and I’ve got a bit of a drive to get home.”
Danny says nothing, but a smirk brushes the corners of his lips.
“What’s so funny?”
“Yeah, you’ve got quite a drive,” Danny says. “All the way up to room 326.”
“What are you talking about?”
“Jesus! Do we have to go through this every friggin’ day?” Danny says. “When are you going to get it through your thick skull that you don’t have a home? THIS is your home. This is where you live.”
Before I can respond, I see Chas [Sonny and Cher = Chastity Bono = Chas], the dumbest of the staff of dumb attendants, coming toward me with another guy I don’t recognize, both dressed in scrubs.
“And this,” Chas is saying, “is our star resident, James. Hey, Jamie. How you feelin’ today?”
I despise nicknames, so I ignore Chas and turn to Danny. “Don’t talk to him,” I say.
Danny decides to hide by turning himself into a dog.
Chas: “Oh, so you’ve got your friend here with you today. Hey, Danny!” he says, waving vaguely to my left, my right, over my head like Danny’s some kind of angel or something, hanging in mid-air.
“Don’t say a thing,” I whisper to the dog. “Don’t say a friggin’ word.”
A few days ago, I found a typewritten letter I hadn’t seen in years. It’s from my mother, sent in June, 1982, when she was about the age I am now and two years into her struggle with Lou Gehrig’s disease. It’s the last letter I ever received from her.
Thank you for your morst inform-
ativeletter     in a long time.
I'm tal   k  as well    now,as I CAN EVEN
YOUR dad has trouble understanding   me.
My tongue muscles    aregettingla   zy.
my knees   are   alo not holding up well.
I Read , in   Guideposts
I read an artical called
"  Imaging"     THE JIST OF IT WAS THIS.
you                 in your mind what you would
likeptotbe, then you pray & te-
ll   theLordI told  Him    Ididn'T want to be la-
ze.  the next morning when I woke up my left handwhi-
habeen swollen & mishapen for 2 years was
normal size &my fingers were straighter tha-
n  they had been    in at least     2 yrs.
now,  what do you think of that?  My strength
hasn  T returned yet,  but theropy is
working on it.
Nine months later, bedridden and unable to communicate except by answering basic yes/no questions with eye blinks, she died.
The immediate family gathered at my father’s house near Santa Ana for my mother’s funeral. Several of us had travelled from the east coast for the event, others from places nearby. It was the first time in a number of years that the whole family had been together. Even those who lived only a short distance away came prepared to stay overnight. It was like a grown-up’s slumber party that went on for three days, full of laughter, camaraderie, and reminiscences. On the fourth day, people began to make motions to leave; my sister had to return to Florida, my younger brother and his family were headed back to San Francisco, and I myself had a flight to New York later that evening. When everyone else decided to see my sister off at the airport, I stayed behind to pack. As each group left, I grew more and more anxious; the warm feeling of being surrounded by my family began to dissipate. Finally, the front door bumped closed and I was alone in the silent house. I sat down on the stairs and began to weep, overwhelmed by what felt like sudden abandonment. Remember this lesson, I told myself. Life is ultimately about leaving or being left.
I resolved at that moment that I didn’t want to be left, didn’t want to be one of a slowly thinning group of mourners at a string of funerals. I still feel that way. I have no children or grandchildren to worry about, and my spouse is well provided for. He’s also sufficiently younger than I that I can hope he will find other companionship once I’m out of the picture. I’m sorry that—if my plan works out—he’ll have to deal with losing me, as will any of my surviving siblings, but what’s the alternative? I can’t bring myself to contemplate living without them.
So what’s next? I don’t know, but I’m not going to sit around and wait to die. Although none of the current Parkinson’s medications will slow its progression, there are things that seem to help. Vigorous daily physical exercise (building those alternative pathways) is one. And there are meds that help with some of the symptoms, though most of them come with their own undesirable side effects. I’ve met people with Parkinson’s who were diagnosed as long as eighteen years ago and are still doing well.
I have a guitar someone gifted me twenty years ago. It looks brand new; I fiddled with it a bit when I first got it, then put it away, thinking I would pull it out when I had more time for it. Eventually I put “learn to play the guitar” on the list of things I planned to do in retirement. Have I waited too long? Will my stiffening fingers and unreliable memory make my attempts to master it a useless, frustrating exercise?
Those are just two more questions I can’t answer, but this I do know: right now, I’m late for a guitar lesson.
Jim Brega earned his BA from San Diego State University and an MFA from the University of Illinois. His work has appeared in a number of journals, including Hippocampus Magazine, Haunted Magazine, Red Savina Review, Plenitude, r.kv.r.y, and Foliate Oak, and in the 2012 anthology A Year in Ink 5. He lives near San Diego. You can find more of Jim’s work on his blog.