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.
Anyone can dash off an account of their childhood, told in hindsight with gratitude for the opportunities and challenges that helped them grow. But to convey not only what we’ve done and where we’ve been but also who we are, we sometimes need to also tell the history that’s lodged in our bodies. Hadley’s history is short — a mere 39 years so far — but the story of her body is long, packed with plot twists and mystery.
At the end of their year in the Czech Republic, Hadley, Jana and Fred returned to their house in Missoula. Showering in the bathtub one day when she was five, Hadley became very dizzy and her ears started ringing. Bright spots danced before her eyes before she slipped into darkness and fainted. This was the first of about twelve fainting episodes she would experience throughout her life, events that doctors considered to be unrelated to the pulmonary stenosis that had been surgically corrected.
Hadley experienced many periods of not feeling well while she was growing up. Because her pediatrician often made her feel as if she was wasting her time, she was embarrassed when she went to see her for health problems, like recurring gastrointestinal distress. Even in her twenties when Hadley was having trouble breathing one day, she debated all day and night whether to go to the doctor, worried she might seem hypochondriacal. When she finally went in, her doctor took an x-ray that revealed a collapsed lung — the result of a powerful reaction to a pain medication she’d taken after her recent wisdom teeth extraction. “I guess you really do have something going on,” the doctor said, seeming to confirm for Hadley that the doctor had usually disbelieved her.
Also in her twenties, Hadley developed daily abdominal cramping that was so intense it would stop her in her tracks. For more than a year she shuttled between doctors, most of whom told her the pain could be attributed to being young and female. She’d begun to feel that once again she might be making a big deal out of nothing when a doctor finally discovered a cyst on her fallopian tube as well as other small, benign growths on her ovaries. After he surgically removed them, Hadley remained pain free for about a year before the cramps returned. She was frustrated and still exhausted by the year of appointments leading up to surgery and had assumed the cyst removal would’ve taken care of the problem. She didn’t return to her doctors, deciding the pain would be easier to cope with than the humiliation of being made to feel she was overreacting.
While Hadley was pregnant with Sarah, the cramps went completely away, confirming in her mind that they had been real. But her pregnancy was not easy. Eight weeks before her due date, she experienced abdominal pain that she downplayed at her doctor’s appointment. When her doctor discovered she was in pre-term labor, she was admitted to the hospital. By the next day, the contractions had stopped. Hadley was discharged and put on bed rest for a week. She had a painting commission due, a large wall piece that involved carving designs in many wood pieces and then painting them. She brought all the pieces to bed with her and carved for days, leaving wood shavings in the sheets. This determination to honor her commitments no matter what is one of Hadley’s strongest character traits and one that has persisted through her toughest times.
The first day Hadley was allowed to get out and walk around, she was gripped by a cramp more excruciating than any she’d had; this time, she was certain she needed to go to the hospital. The pain turned out to be a kidney stone, which she passed the next morning. She was given a dose of pain medication and when she got home the same day, she began to have the breathing difficulty she’d experienced years earlier when her lung collapsed. Worried that the medication had triggered the same reaction, she stopped it. She waited three days for her breathing to correct itself, telling herself not to worry because she’d learned that at the end of a pregnancy people commonly experience breathing problems. When her breathing didn’t improve, she finally went to the ER, where they discovered she was experiencing mild congestive heart failure. It turned out that Hadley’s history of pulmonary stenosis made her vulnerable because during pregnancy, a woman’s blood volume increases by nearly fifty percent. The extra plasma was overburdening her heart.
From then on in her pregnancy, Hadley was closely monitored. She was induced ten days early and given an epidural so that while she was in labor, her heart wouldn’t be further strained. Sarah was born healthy, weighing five pounds, three ounces. Hadley was thrilled. But she’d intended to breastfeed as long as she could and Sarah had trouble latching on. On top of that, after the birth, Hadley continued to bleed. She convinced herself the bleeding was normal but at her six-week follow-up, her gynecologist was alarmed and ordered an ultrasound that revealed some of the placenta from the birth had been left behind. After everything Hadley been through with her pregnancy, hearing she needed yet another procedure to remove the placenta nearly put her over the edge. She was ready to be at home enjoying Sarah.
For the next two years, Hadley’s only physical complaint was unrelenting exhaustion. She told herself that it was probably because she had a newborn, then a one-year-old, then a two-year old. Finally, she rationalized that she was simply experiencing getting older.
Hadley would still faint from time to time and since doctors were not concerned, she became nonchalant about it herself, often announcing to the person she was with, “I’m going out now!” Fainting, or vasovagal syncope, is often a symptom of orthostatic hypotension, a sudden drop in heart rate and blood pressure that leads to reduced blood flow to the brain. After an episode in 2008 when Hadley had been “out” for an alarming forty minutes, she underwent a tilt table test to diagnose the cause of her fainting. For this test, a patient is outfitted with monitors to track vital signs, then strapped to a table that tilts until she faints. Typically, a patient will pass out from the tilting around the twenty-five minute mark; it took Hadley only eleven minutes. Her heart rate in the moment before she fainted fell from eighty-five to sixty-two beats per minute and then plunged into the twenties. Once she was out, there was an interval of six seconds when there was no heartbeat for several moments. Her blood pressure dropped drastically, from 108 to 60. A delta of 30 is considered significant orthostatic hypotension and Hadley’s proved to be extreme. She was diagnosed with orthostatic hypotension and advised to stay well hydrated, increase her salt intake, and be careful when rising from a sitting or lying position.
In 2009, when Sarah was three, Hadley’s obstetrician reassured her that she could try for another baby. A couple of bad viruses that fall deterred her and then, during a family vacation, she developed severe sciatica. An x-ray showed she had degenerative disc disease and she was prescribed physical therapy. When the therapy didn’t help and she noticed her right leg was dragging, the PT suggested she have a neurological workup. By the end of November, she’d lost twenty pounds with no change in her eating or exercise habits. Her hands were falling asleep while she was working, and she was experiencing tingling, or parasthesia, in various parts of her body. Occasionally, she would drop objects for no apparent reason. She began having difficulty with fine motor movements.
In January 2010, Hadley had her first appointment with Dr. Reid, a neurologist in Missoula who would prove to be a loyal and dedicated advocate for Hadley throughout her medical ordeal. Dr. Reid immediately made Hadley feel she’d be well cared for, telling her, “You’ve come to the right place.” She ordered a lumbar puncture and MRI tests to rule out diseases like multiple sclerosis. When the tests results were normal, Hadley and Dr. Reid agreed she should go to the Mayo Clinic in Arizona. There she had extensive blood work, underwent a spinal tap, brain and spine MRIs, CT scans, nerve conduction studies and electromyography. All tests appeared normal, with the exception of a positive Babinski reflex and hyperreflexia, both unusual and typically present only in adults who have neurological disorders. A Babinksi reflex occurs when the bottom of the foot is stroked and the big toe pops up to the top of the foot and the other toes fan out when the bottom of the foot. It’s abnormal after the age of two; in an adult, it’s a sign of damage to the nerve paths connecting the brain and spinal cord. Hyperreflexia is manifested by an overactive response to bodily stimuli. The Mayo’s findings were inconclusive:
Multiple symptoms with no evidence of organic neurologic disease.
Her hyperreflexia does not likely reflect central nervous system disease. It is longstanding and can be seen in persons who are anxious.
At this time I have recommended that she resume low-impact exercise, maintain a well-balanced diet, and address any potential stressors that could worsen her physical condition. She could also potentially benefit from a referral to an occupational therapist for improvement of hand strength and coordination.
The Mayo neurologist’s suggestion that anxiety and stress might be causing Hadley’s symptoms demoralized her. She returned to Missoula, devastated that she still didn’t know what was wrong with her. To make matters worse, she sensed that there were a few people around her who were thinking she was imagining her illness and that she needed to stop seeking help and get on with her life.
For many people, health issues occupy a huge amount of time, energy and psychic space. Patients with complicated health histories get road-weary as they recount them over and over to doctors. And sadly, doctors from whom a patient seeks help are not immune to tuning out when the history begins to read like an epic war story. But Dr. Reid, Hadley’s neurologist in Missoula, never stopped believing Hadley was suffering from an organic disease. After the Mayo, at their next appointment, she surprised Hadley by having her perform the same neurological drill I was put through by the general neurologist. She noticed Hadley’s dragging gait, how she didn’t swing her right arm when she walked, and felt the telltale Parkinson’s cogwheel rigidity when manipulating Hadley’s arm.
“Hadley,” Dr. Reid said, “I think we’ve been going about this the wrong way. Maybe you have Parkinson’s disease.”
Hadley was shocked — she was so young! Like me, she thought Parkinson’s was a disease for older people, like her stepfather, Charlie, who’d just been diagnosed the year before. She was prescribed levodopa to take for a week, as I had been. Right away, the levodopa significantly boosted her energy, a change that confirmed she was dopamine deficient and suggested she might be dealing with Parkinson’s.
Because there was not a single movement disorders specialist in Montana, Dr. Reid referred Hadley to an MDS in a neighboring state. At first, because Hadley was so young, the MDS, Dr. Youngman, suspected Hadley had Munchausen Syndrome, a serious psychological disorder in which a patient pretends to be sick or injured to get attention. (Fortunately, he didn’t tell her about this concern until over a year later.) After examining her though, Dr. Youngman seemed to easily confirm Dr. Reid’s diagnosis of Parkinson’s.
Hadley remembers crying in her car after the appointment, both because in her words, “I felt Parkinson’s was the true answer,” and because she didn’t know how to break the news to her mother, who was still adjusting to Charlie’s PD diagnosis. Hadley’s family members were distressed but supportive, and relieved that her years of searching were over.
For Hadley, the diagnosis marked a new start: she no longer would be preoccupied with what was ailing her or spinning with self-doubt about the validity of her illness. Instead of facing a life-threatening condition that could prevent her from seeing Sarah grow up, she saw her life stretching out before her, however imperfectly. At last, she could direct her energy outward with a sense of purpose as a mother, wife, daughter, friend and artist.