An Alert, Well-Hydrated Artist in No Acute Distress
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.
“Do you think you’d be able to manage such a large commission?”
In early November 2012, this was the question someone asked Hadley about the Montana State Capitol Building mural project. Hadley was the only Montanan — in fact, the only Westerner — in the group of three finalists, and her work was well known; so was her Parkinson’s diagnosis, because of her organization, Summit for Parkinson’s. Now, Hadley herself was wondering if it was reasonable for her to remain in the competition.
Later that day on the phone, Hadley and I mulled this over. On the one hand, she was so tired and slow-moving that it was difficult for her to imagine physically executing the mural if she were to win the competition. On the other hand, she still didn’t have a clear diagnosis and the finalist selection was a year off; she could be fine in a year, for all anyone knew. She decided to be optimistic and stay her course. If she were to win it, the mural commission would be the most exciting project of her career.
Hadley continued work on the Missoula Catholic Schools murals, grappling with her increasingly bothersome symptoms. Since all of her movements were slow and stiff, her dexterity was worse, climbing scaffolding to work on the large panels was becoming difficult, and she had trouble getting up from a squatting position without support. All it took for her to lose her balance was someone tapping her on the shoulder from behind. She fell several times, luckily without injury. In addition, she was struggling with focus and concentration and her field of vision seemed to be narrowing.
Fortunately, Hadley’s Missoula neurologist, Dr. Reid, was still very much in her corner. Dr. Bright’s diagnosis of Parkinson’s and Dr. Youngman’s dismissal of both Parkinson’s and MSA, and his embrace of upper motor neuron disease still didn’t make sense to Dr. Reid. She felt it was time to call in the big guns — the Mayo Clinic in Rochester, Minnesota.
The Mayo could take Hadley in late November and scheduled her for a series of appointments during a ten-day period over Thanksgiving. Hadley wanted John to stay in Missoula during her first week at the Mayo so that Sarah and he could spend the holiday as they usually did. John would join her the second week so that he could be with her at the important appointments summarizing the Clinic’s findings. To break up the stretch of time Hadley would be alone, I decided to fly to Rochester on the Saturday after Thanksgiving to be with her for a few days.
Rochester, Minnesota, five o’clock, late November 2012. Looking forward to our movie, Hadley and I paid for our mojitos and hustled out of the bar into the slipstream of the crowded mall. The drinks hadn’t been strong, but we must have appeared a little drunk anyway, with our awkward walks. For both of us, maneuvering through crowded spaces had become trickier. To make matters worse, for diagnostic purposes, Hadley had stopped taking levodopa for the duration of her time at the Mayo. I could tell she was concentrating hard on not running into the racks of scarves and hats and people swimming toward us in their fat coats and boots.
But at least, unlike me, she knew where we were going. Many times in the past six days she’d traversed the underground arteries that branch from the mother ship Mayo; they minimize a person’s contact with Rochester’s harsh winter temperatures that average between 12 and 27 degrees. Fast food, fast souvenirs, fast art — in the mall, they’re all available for the 35,000 people who work at the Mayo and the thousands of patients who are killing time between heart-pounding visits to the medical specialists who’ll send them back to Riyadh or Rome, Marseille or Missoula with the most costly souvenir of all: a diagnosis that will change their lives.
The teeming tunnel spewed us into the lobby of the Mayo. I took a deep breath as the soaring glass curtain wall lifted the compression in my chest. The Gonda building is the newest in the 3.5 million square foot medical center and has the ambiance of a five-star hotel or corporate headquarters; a sea of beige marble, bronze statuary and medusa-like glass Chihuly sculptures make it easy to believe that it really is The Best Medical Center In The World. On Monday morning, Hadley and I would be back here at nine a.m. for her appointment with the movement disorders specialist. But now, we were just passing through to the garage, hoping to get to the movie on time.
I climbed into the driver’s seat of a rented red Chevy Impala and Hadley sat next to me, navigating with her iPhone. The Galaxy 14 Theater was 5 ½ miles south on route 63, a road lined with warehouses and malls, devoid of landmarks — unless you counted Target, which I soon learned people there do.
Hadley was subdued. Finally, she asked, “Do you want to hear what that one doctor wrote in her report about me?”
I did. Hadley scrolled through her emails on her phone. Mayo reports are sent to the patient within a couple of hours after each appointment. Hadley had told me that the first doctor she met with six days ago, a general neurologist, had given her a “probable” diagnosis of multiple system atrophy. But the next day, a physical medicine and rehabilitation specialist reported inconsistencies in Hadley’s exam that might suggest she didn’t have an organic disease at all. This was the report that was bothering Hadley.
“I felt like she was trying to trick me,” Hadley said. “Listen to this:
‘Though she has definite organic problems, she has inconsistencies on her examination. During handwriting, she wrote small, but she has excellent coordination and grasp/relax of the pen. While I was typing my notes, she was toying with the ring on her finger, moving her fingers in a normal and fairly rapid way without difficulty that seems very different than her formal exam findings. She has broad based ataxic, stiff-legged gait with decreased arm swing and very turgid trunk and pelvis. However, her gait as she left the examination room was at least 50% better than during the exam.’”
Hadley slapped her phone down on her lap. “In a half-mile, take a left turn,” the phone instructed us. “You see what I mean? It’s like she was looking to trip me up.”
“Wait,” I said. “Read it to me again. I think I know what you mean, but I need to hear it again.”
When Hadley had finished reading, I understood; the doctor clearly had been looking for contradictions in Hadley’s movements. Why? I wondered.
“That whole thing about me having a better gait when leaving the exam?” Hadley said. “Of course I did. She had me walking back and forth in this tiny room, every two steps having to turn, and turning is always hard for me. When the appointment was over, I got to walk straight out the door, which is a whole different thing.” I knew this difficulty Hadley was talking about; changing directions when walking can often feel precarious to me. “And when she was watching me twirl my ring?” Hadley went on. “That’s a small repetitive movement, a habit like a twitch almost, completely different from the bigger hand movements she’d asked me to do. Also, my decent coordination with the pen is because I’ve been working with an occupational therapist on my grip so I can keep painting.” Hadley sighed. “But she believes all this is proof that it’s all in my head. It’s like she’s saying, ‘Gotcha! It’s functional!’”
“Functional” was clearly the hot-button word for Hadley, but I wasn’t familiar with it.
“It’s a movement disorder brought on by psychological causes, not organic,” Hadley explained. “Listen to this part — she’s so evil! ‘Alert, appropriate affect, excellent historian. Admits I am not the best patient.’ Totally out of context!” Hadley says, before reading on: “’She was told she had Parkinson’s disease and had been pretty comfortable with that until this summer when things changed. She has moments when she is very overwhelmed. She expresses a lot of self-doubt. Depression is likely. She may need further psychological evaluation and counseling relative to the functional overlay.’”
Hadley groaned. She was flushed and furious. She suspected this doctor’s report had biased the movement disorders specialist she saw the next day who wrote in his report:
Impression: Gait disorder and rigidity. The patient has a very unusual exam. This is not a classic disease of anything. I agree we need to consider things like stiff person syndrome and primary lateral sclerosis. I am not comfortable with the diagnosis of multiple system atrophy. I find the signs of her parkinsonism to be unusual, and I think a functional etiology needs to be in the differential diagnosis for her problem.
It seemed MSA and PD were no longer even on the table, having been blown off by the gust of a suggestion: functional movement disorder.
I found myself thinking again about Munchausen syndrome, in which a patient invents symptoms and travels from doctor to doctor, changing her medical story. Could this “functional” word suggest something like that? I didn’t buy it. Once again, I felt indignant on Hadley’s behalf. Despite the fact that no doctor in recent years had doubted she was afflicted with an organic disease, I could see her confidence was shattered and she was in the grip of all the memories of doctors who hadn’t taken her symptoms seriously.
Hadley’s phone announced that we’d reached the Galaxy 14. We parked in the nearly empty parking lot and the insides of my nose froze as we ambled toward the theater’s entrance. Inside the huge, red-carpeted lobby there were only the ticket seller, popcorn scooper, soft drink dispenser, Hadley and me. I ordered some popcorn for us, trying to cop some much-needed feeling of fun. I began to worry whether the movie would be okay for Hadley. Although there were fourteen theaters in this one building, we’d only considered two of the movies playing, deeming the others too stupid, too violent or too sad. We’d finally nixed the Bond movie for potentially being too stimulating after Hadley’s exhausting days at the Mayo. That left “The Sessions.” “Heartwarming” the reviews said, which to me sounded prescriptive.
There were three other people in the cavernous theater. Who would come to watch a movie about a man in an iron lung on a 14-degree Monday night? I wondered. Loneliness settled over me and I knew Hadley felt it, too. She pulled out her phone and it lit up her face like an old friend.
“The Sessions” is based on the true story of Mark O’Brien, a polio victim who spent most of his life in an iron lung. In his thirties, he hired a sex therapist with whom he could lose his virginity. The film was touching, poignant, but I wasn’t watching it through my own eyes, I realized ten minutes into it; I was trying to see it through Hadley’s. Could it be entertaining to watch someone else’s cruel medical plight when you were seeking a diagnosis for your own?
Hadley leaned into me. “I’m worried that after all this, I’ll leave the Mayo without knowing anything more,” she whispered. “What do you think of what the rehab specialist wrote?”
How could I possibly have imagined with everything on her mind that Hadley would be able concentrate on a movie? In my head, I tried to rationalize the doctors’ reports, reminding myself that this was the Mayo after all, and I should keep an open mind and let the professionals do their work. Besides, I hadn’t yet had a chance to research what this “functional” diagnosis really meant. But then my intuition blared: “functional movement disorder” simply did not fit Hadley’s case.
“Forget about that doctor,” I whispered. “She just has something to prove. No one will pay attention to her report.”
When Hadley laughed and said, “Right? Oh good,” I knew I’d said the right thing.
Still, she barely touched the popcorn. Occasionally, she checked her phone. Then for a while she seemed to settle into the movie. Helen Hunt sweetly caressed her disabled client; witnessing the movie’s intimate scenes in such an empty theater, I felt more like a voyeur than part of an audience. I wondered if Hadley was wondering, as I was, whether this man’s horizontal life was better or worse than her life would be. Was his condition or hers the worst thing?
Each time the caged man laughed, it signaled a little victory for humankind — a testament to how, if only for a moment or two, we can rise above even the most challenging circumstances.