The story of two artists with incurable neurological disease sharing fear, frustration and friendship as they push to complete the most rewarding work of their careers.
People often describe someone who’s risen above great challenges as having an “indomitable spirit.” For those with a serious illness, I believe indomitability might begin organically, not by choice, during a drawn-out diagnostic process. Shunted from doctor to doctor, we develop emotional muscle chasing something we don’t want to catch while fear dogs us, nipping at our heels. It takes determination to face unpleasant tests, to cope with doctors who tell us things we know in our gut are at best incomplete. We build courage keeping the dogs at bay for however long it takes to get a diagnosis.
In July of 2009, two and a half years after my diagnosis odyssey had begun, I persuaded my integrative medicine physician to leave his building so he could watch me walk. After all, if walking was my main difficulty, how could he possibly make an assessment while I was sitting in a chair? Out in the parking lot, he seemed jittery and mole-like; I felt my belief in him diminish, as if the bright daylight had illuminated his mere mortalness.
Back in his office, his air of authority was restored. “Catherine,” he said in a tone signaling an admonishment. “There is nothing physically wrong with you. But you’re very anxious. I want you to think about this retreat.”
He handed me a flyer with an illustration of rolling hills, trees and a bodhisattva. The bodhisattva really pushed my buttons. I’m sure she was a lovely woman, but with fifty-three rational, intelligent years under my belt, didn’t I deserve a little respect too? I was angry, but afraid to show it.
“It’s in my head,” I told him evenly. “But not in the way you think.”
Now he was exasperated. “What will it take to convince you?” he actually whined. “Do you want me to order you a brain MRI?”
“A brain MRI won’t diagnose all neurological diseases,” I said.
“Yes it will.”
I was pretty sure he was wrong, but there are times we defer to our doctors when it would serve us not to. We want to believe in them. And we want them to believe we believe in them, because we need them: they hold the keys that unlock the mysteries of our bodies.
“Okay,” I told him. “Yes, a brain MRI.”
The MRI technician said, “You again?” when I walked in, blasé about the procedure now that I was a regular in this lab. I felt a little macho lying calmly in the tube of terror, wondering why it is that we can take pictures with our phone of piranha sushi in Venezuela and text them to people in Wyoming, but no one can figure out how to stop the ear-splitting soundtrack inside an MRI machine.
“See?” My doctor said, when the brain MRI report came back normal. “Feel better now?”
I wanted to slap him, though I’ve never slapped anyone in my life. “No,” I said. “But at least I know I don’t have a brain tumor.” In a few minutes, I would be dragging to my car with no explanation for my sloppy walk.
In the fall, a year after my first visit to the general neurologist, I returned to see him. He put me through the same neurological drill. When he was finished, he said nothing, turned his back to me, and scribbled in my chart.
Finally he said, “The only thing I can think of is that it could be Parkinson’s.” He turned to look at me, as if it had just occurred to him that maybe he should. “It’s not the worst thing,” he said. This of course was true for him, in the context of the many neurologically impaired patients who pass through his exam room, and had he taken the time to explain to me where Parkinson’s stood on the neurological disease spectrum — or anything about Parkinson’s, for that matter — I might have been reassured. But he hadn’t, and now icicles were forming in the air between us. He tore a piece of paper from his pad — a prescription for levodopa, which I learned later is the gold standard Parkinson’s medication that all patients end up taking. “Take it for five days,” he said. “Then call me on the fifth day and tell me how you feel when you walk. If you have Parkinson’s this should help.” He ushered me out the door. “I don’t want you leaving here thinking you have Parkinson’s.”
“I have Parkinson’s,” I told my husband, Lewis, at home that night.
He said, “No you don’t.”
My husband — relentlessly optimistic: he could’ve been a doctor.
I began taking the levodopa and waited to see what it would lend to my gait.
“You’re walking better! Your arm’s swinging!” Lewis said cheerfully on the fourth day. He didn’t grok that this was not good news.
Am I walking better? I wondered. I knew that in some hard-to-describe way, Ifelt better. On the fifth day of taking the levodopa, as instructed, I left a message with the neurologist’s receptionist. When the doctor didn’t return my call, I called again on the sixth day, and the seventh. The weekend came and went. I had no idea whether I was supposed to keep taking the mind-altering, scary-as-hell brain drug that might have been treating a mind-altering, scary-as-hell brain disease. By the end of Monday, when he still hadn’t called back, I was not only scared, I was furious. He was messing with my brain!
On day ten, after I’d told the receptionist to let the neurologist know how I felt about his negligence, the neurologist called me. His greeting was brusque. Having felt my dissatisfaction was fully justified, now I found myself stumbling over my words, reminding him that I had been following his instructions to call him but that he…“I’m a very busy doctor,” he broke in. “This is a busy clinic. I can refer you to a movement disorders specialist here, but if you need more attention, you should look for a doctor in private practice.”
His hostility shocked me, but worse, I felt left out at sea. Impulsively, I decided to altogether avoid his highly esteemed clinic and look elsewhere for a movement disorders specialist (MDS). I made an appointment with one in a Parkinson’s center an hour away. Two days before Christmas, I drove there, vibrating with the probability that I was in the fast lane, hurtling toward something terrible that would change my life.
Once in the exam room, a nurse took my history and gave me a list of eight words — house, bread, blender, dog, milk, church, spinach, lawn — that she told me to try to remember for the duration of my appointment. Was she kidding? My blood pressure alone was probably enough to erase my short-term memory. But when she left the room, I sat waiting for the doctor, reciting the words in my head. It seemed important.
The door burst open and the MDS, a woman in her forties who appeared flushed and harassed, introduced herself and took a seat behind her laptop. Reading over my intake information, she glanced up only occasionally to peer at me. Then she rolled her chair over to me and put me through some of the same drill the very busy neurologist had. Turning my arm over in her hand, she muttered, “Cogwheeling.” She stood. “Okay, let’s walk.” She led me out of the exam room.
I walked down the short hall and back just once and she motioned me back into my chair. We’d been together less than five minutes. Sitting down she said, “You have Parkinson’s. Any questions?”
I suddenly felt like a kid who had been planning to walk slowly into the frigid ocean water but had been cajoled into diving off the rocks. “Um…” I started. “Actually, since I only learned two seconds ago that I have Parkinson’s, I haven’t really had time to think of questions. But I am wondering, how do you know?”
“I’ve been looking at people with Parkinson’s for twenty years. You have cogwheel rigidity, are affected on only one side — which is typical at first — and already have some facial masking.”
I thought about my face. She was wrong about that part, I was sure; that’s just how my face is. “What should I do?” I asked.
She rolled her chair back behind her laptop. “So basically, there’re dopamine agonists like Mirapex and Requip, and there’s levodopa, which everyone ends up taking sooner or later, and then there’s the MAO-B inhibitor, Azilect, and the first line of defense is usually the agonists and most people tolerate them okay, though they can cause insomnia, weight loss, hallucinations, sexual inhibition and addictions to shopping and gambling, and levodopa can cause some problems like dyskinesia so I’d want to start you on Mirapex and also Azilect, the MAO-B inhibitor, because it’s the only drug that some studies have shown might slow disease progression but uh oh, I see you’re taking mirtazapine, which you can’t take when you’re taking Azilect, so I’d want you to stop taking that.”
She looked hard at me. “Do you think you can stop taking the mirtazapine?”
I was reeling. So many names! Like the first chapter of a Russian novel. And I had the other list of words to worry about: house, bread, blender… “Sorry?”
“Do you think you can stop taking this one medication so you can start taking Azilect?”
“I don’t know.”
“Well.” She closed her laptop. “You can think about it. And we’ll want you to have a tremor soon.”
This seemed like the oddest thing she’d said so far. “Why?”
“Because we don’t want you to have atypical Parkinson’s, which can be much worse.”
“Oh,” I said. I didn’t want to hear more, but this mysterious bit of information, so carelessly dispensed, would come back to haunt me.
“What else?” she said.
“Do people my age often get Parkinson’s?”
“Yes they do!” This seemed to excite her; she smiled for the first time. “In fact, I’ll want to introduce you to a group I started — all women around your age and even younger who have Parkinson’s but who are all go-getters — active, fun, creative. I don’t tell a patient about the group if she’s the type who feels sorry for herself. No self-pitiers in this group. I think you’d love it. They’re called the Parkinson’s Princesses.”
Astounded that I’d found a second neurologist even more insensitive than the first, I said, “Huh,” and smiled broadly, so she wouldn’t think I was for one second feeling sorry for myself.
She told me to make a follow-up appointment, but I knew I wouldn’t. “What about the words?” I asked.
“Milk, dog, bread, blender, church, spinach, house, lawn.”
“Terrific!” she said. “Have a great holiday!”
During the long drive home, I felt at once stunned and strangely liberated. I’d been given a serious diagnosis, yes, and I’d need to find a neurologist with a modicum of emotional intelligence. But it seemed clear I wasn’t going to die of a deadly neurological condition and I didn’t need chemotherapy or other drastic interventions. For the first time in two years, I had no doctors’ or physical therapy appointments or tests on my calendar. The big, hairy question in my head was gone. Doctors would stop telling me I was worrying about nothing and friends would stop asking me why I was limping.
It wasn’t the worst thing.
By the time I’d reached the highway off-ramp for San Francisco, though, I realized that before the end of the day I’d be paying a visit to Dr. Google to see what he had to say about Parkinson’s. The once undefined future of my body soon would be circumscribed by words that wouldn’t easily be forgotten: stumbling, lurching, shaking, freezing, mumbling, drooling.
The nipping dogs had caught up with me. I would need to tame them.