Parkinson’s, Oscars, and Willful Ignorance

And now for something completely different.

You may not know that my husband Gary has Young Onset Parkinson’s Disease. He was diagnosed at the age of 30, just like Michael J. Fox, but without the millions of dollars.*

MJF was on the Oscar’s the other night. I didn’t watch it live, but saw several Facebook posts where people mentioned how great he looks. One person said that she wouldn’t have any idea he has Parkinson’s, if she didn’t already know. Lots of people commented on how happy they were that he was doing so well. Everyone seemed to think he looked great and couldn’t believe how well he functioned.

482cba07ffd69300dec4dd253e94b374I went and watched the clip, of course: Oscar clip.

He does look good. He’s 25+ years out from diagnosis, and I’m so pleased that he’s able to do things like be on the Oscar’s.

At the same time, I watch him and see all the signs and symptoms of PD. Notice how he starts on the other side of the Delorean and does not actually get out of the car–he starts standing behind and out of view, because getting up and out of the car would be so difficult. Notice how his left leg doesn’t bend, how it drags when he walks. Notice his frozen left shoulder and lack of arm swing. Notice how he keeps his hands in his pockets, so he won’t display any tremor or dyskinesia. (Dyskinesia refers to the involuntary muscle movements caused by high levels of PD medications. It can sometimes look like swaying or swinging or a type of contortions.) Notice the lack of affect in his voice and his difficulty articulating.

I mean none of this to criticize MJF. Rather, I point out how much easier it is to say, “Oh, he looks great” and ignore the reality of PD. We’d like to pretend we don’t see the symptoms, that everything is fine, that modern medicine is miraculous. (It is miraculous–thank the gods for modern medicine. And yet.) We’d like to pretend that PD is nothing more than a bit of a hand tremor. We’d like to ignore the lived reality of it, because it’s easier not to know.

I know the cost he pays for this kind of appearance. I imagine how carefully they arranged his medications to make sure he was optimally dosed with levodopa/carbidopa for this precise moment on stage. Not too much. Not too little. How much antidepressant? How much anti-anxiety meds? How much pain killer or other stimulants?

Those of us who live with Parkinson’s know its symptoms encompass all areas of life and can’t be shrugged away so easily with a glossy coating of Oscar gold.

I hope MJF is doing well. I hope we continue to find new therapies and medicines. I hope.

I hope.


*That’s a joke I make often, but it’s also a statement full of rue. Millions of dollars help. With millions of dollars, you can get the best therapies, the best medicines, the best home health aid. With millions of dollars, I would be able to stay home and make sure Gary takes all his meds on time. Make sure he gets to his doctor’s appointments. Make more doctors appointments, for things like regular physical therapy. Join the Y and get him to the PD Rock Steady boxing class or other therapies on a regular basis. But. We don’t have millions of dollars, so we do the best we can.

Sneak Peak Excerpt

Tomorrow is release day for Dark Moon Wolf! Here is an excerpt from the first chapter to whet your interest. Pre-order today:

I peered down over the crib rail and, at that moment, the clouds moved so moonlight clearly illuminated the creature in my son’s crib. A wolf, unmistakably a wolf pup, with grayish-silver fur standing fuzzily askew, black nose questing in the air, tawny eyes framed by perfect black eyeliner. When the pup saw me, he gave a happy little wriggle and whined more loudly.

The wolf pup’s gaze met mine and, in an instantaneous rush, I knew him and I understood somehow this was Carson. This wolf was Carson. Here was my Carson, here was a wolf pup, here was my baby, and he started to whine more desperately and paw at the crib slats. Everything else shut off—the questioning, the panic—in the face of my baby’s need.

So I picked him up. He snuggled against me happily, nuzzling me with his wet nose, breathing in my scent, licking absently at the sleeve of my nightgown. My mind froze in panic, but my body functioned on autopilot. I walked around the room, bouncing him gently, singing a bit of a lullaby, just as usual. And, just as usual, his eyes grew heavier and his body soon felt lax with sleep. When he was well and truly out, I carefully laid him back in his crib and tiptoed from the room.

As I closed the door behind me, careful not to make the slightest noise, the pent-up adrenaline left my body and I started to shake, my muscles weak and watery, my head whirling. I slid down the wall, hugged my knees to my chest, and focused on not hyperventilating. I pressed my forehead to my hands, feeling my palms break out in a cold sweat. After a while, I stood up gingerly, opened the door to Carson’s room, and looked in.

No, I wasn’t insane. A wolf lay in Carson’s crib. Carson was a wolf. Carson was a… I glanced up at the moon, framed perfectly in the window, and silently closed the door again.

I walked down the hall to the bathroom, poured myself a glass of water, and stared at my reflection in the mirror. Yes, still me. I picked up my glasses from the bathroom counter and the room snapped into clearer focus. My eyes stared back at me from within the green frames, looking about as shocked as I felt.

“Maybe…” I thought and went back to Carson’s room with my glasses on. A sneak peek, however, showed me nothing had changed. I could just see the sleeping pup a bit more clearly from the door.

“Okay, Julie,” I said aloud in the hallway. “You haven’t gone crazy. Unless talking to yourself makes you crazy. But everything else seems pretty normal. You’re not sick, no fever. You’re not dreaming. So Carson is…Carson is…” I raised my hand to rub my forehead, closed my eyes for a moment, lowered my hand, and said it. “Carson is a Werewolf.”

The words echoed in my head and I suddenly burst out laughing, the kind of laughter that has a sharp, maniacal edge—the kind of laughter that, if I didn’t keep it in check, might yet convince me I was crazy. I couldn’t control myself, though, and after several minutes I sat on the floor, gasping for breath, tears streaming down my face, unsure whether I still laughed or had moved on to crying.

A Werewolf. Carson. Me, Julie Hall, librarian, single mother of a Werewolf. Was it possible? An hour ago, I would have said no. As much as I loved the idea of the fantastical, as much as I devoured books about magic, Dragons, Were-creatures, Vampires, the Fae, as much as I spent time wishing such things were true and I’d glimpse a Brownie or a Phouka creeping about the town, I now realized deep down, really deep down, I thought all such things were the stuff of make-believe. But it seemed I was wrong. At least about Werewolves, because clearly a wolf slept in the crib. The moment after Carson was born, my entire being flushed with pride and exhaustion, our bodies still connected by his umbilical cord, my doctor placed Carson into my arms. My baby looked right up at me with those huge blue-brown newborn eyes, alert, wide awake though silent, and in that instant, I felt a surge of insight and love, as if I’d known him all my life and had been waiting for this moment of revelation. Just now, when his eyes met mine in the crib, I felt the same thing. I had no doubt this was my Carson. Every atom of my being told me so.

Occam’s razor: Carson was a Werewolf.

My God. Was this real? I checked on Carson one more time. No change, just a small gray wolf curled in his crib.

I went into the kitchen and put on the teapot. A few minutes later, I filled my favorite blue mug with a generous dollop of honey, a chamomile teabag, and hot water. My hands icy despite the warm June night, I warmed them against the mug as I sat and thought.

I knew nothing about Werewolves. That is, nothing about real Werewolves. Some part of me gibbered at the thought of making a distinction between fictional Werewolves and real Werewolves, but I told that part to hush while I thought about this logically. The gibbering part screeched again at the thought of logic and Werewolves, then fell silent, perhaps in exhaustion.

The fact remained: I knew nothing about werewolves. Obviously, that old bit about the full moon held true. I hoped that meant I wouldn’t have to worry about Carson turning into a wolf at any old time, just once a month or so. But what else did I need to know? Would silver hurt him? Would he have uncontrollable rages and run through the woods like a wild animal? Would he be violent? Would he have any extraordinary abilities? Vulnerabilities? Were there medical ramifications? I thought back to his doctor’s appointments so far, all of which had gone quite smoothly. Now that his Were-self had manifested, could he continue to get vaccinations? I stopped the cascade of questions running through my mind, aware I degenerated into the trivial as a way to avoid the central question.

Why was he a Werewolf? How had he become a Werewolf?

In all the tales I’d read, people became Werewolves after being bitten by another Werewolf. Carson was only four months old and I could vouch for the fact he had never been bitten. Not by a Werewolf, not by a wolf, not by a dog, heck, not even by a mosquito. I had absolutely no idea how this had happened.

But I knew someone who must.

Random Research & the Hive Mind

The hive mind of the interwebs is a miraculous resource. The other day, I posted on Facebook and asked if anyone knew someone involved in fire services for the National alpinePark Services…and a friend of a friend does exactly the type of work I needed to learn about! After some initial discussions with him, I’m knee-deep in research about the Alpine Hotshots and learning about a whole new world.

stelprdb5126258I just read the story of Ed Pulaski and the 1910 fires in the Coeur d’Alene mountains in Idaho. My hotshot contact says every wildfire fighter knows this story–and I can see why!

Read the story here. Wow. WOW.

Now I’m deep in thought about all the professions, all the subcultures, all the communities in our world–how they all have their own lore, their own heroes, their own body of shared knowledge unknown to me.

I am a reader because I want to know about other lives so different than my own. Literature allows us to enter into someone else’s mind and life. Even the most unrealistic fiction nevertheless reveals actual truth about the world and about people.

This is why I write, too. Writing pushes me to enter into someone else’s head, enriches my life with a layers of understanding.

The Alpine Hotshot research is for book three, by the way…a book I’ve drastically re-imagined in the last month (part of the reason I’ve been blogging less).



Also: Today is t-minus 11 days until the release of Dark Moon Wolf. The first couple of reviews from ARCs are up at GoodReads, which is exciting! I’m happy that the reviewers enjoyed my book.