An Alert, Well-Hydrated Artist in No Acute Distress
Episode Nineteen: Stranded
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
On my last day in Rochester with Hadley, she had no appointments at the Mayo Clinic. Deciding she needed a break from the medical scene, we drove the red Impala an hour and a half to the Walker Art Center. We were excited — both of us are art enthusiasts and had never been to Minneapolis.
The museum was showing a retrospective of Cindy Sherman, whose work has been largely focused on the exploration of identity. Over the course of thirty years, Sherman has been her own model, capturing herself in a huge range of guises and personas. The Walker’s exhibition included 170 very large self-portraits, photographs for which she’d painstakingly transformed herself with clothing, makeup, wigs and even prosthetics to become someone else: 1950’s movie star, figure from a Dutch Master painting, society doyenne, clown, sexy provocateur, to name only a few. Hadley and I wandered through the rooms, amazed by how difficult it was to find the real Cindy Sherman in each of the bold portraits. They were fascinating and disturbing; I found myself somewhat relieved when, at the end of the exhibit, we watched a video of the artist discussing how she works. Finally, the real Cindy Sherman.
The portraits stayed with me. On the plane back to San Francisco the next day, I couldn’t help thinking about the challenge of presenting ourselves to the world in a way in which we can be truly seen. In Hadley’s case, she had put herself on exhibit for doctors over and over again. Unlike Cindy Sherman, she wore no disguises and strove to paint the clearest possible self-portrait, which made it especially hard for her to swallow the Mayo’s suggestion of a functional movement disorder. By trying to catch inconsistencies in Hadley’s movements, it was almost as if the doctor who’d first reported FMD had been looking for the disguise Hadley might be wearing to fool the specialists. During her diagnostic journey, Hadley had been scrutinized, analyzed, drugged, twisted, tilted, poked, punctured, injected, shocked, x-rayed, scanned, operated on. And still, doctors couldn’t seem to see her.
Before all of their testing, what the doctors could see they recorded in their medical reports:
Hadley Ferguson is a 33-year-old, right-handed woman from Montana
Patient is a very pleasant 33-year-old artist who works from home
Patient is a well-developed, well-nourished woman in no acute distress
Patient was awake, alert, and oriented x 3. Attention span and concentration were normal.
There was no evidence of thought disorder
Affect and mood were unremarkable
Verbal expression, comprehension, repetition, reading and writing were intact, prosody was intact
Hadley is a pleasant, alert, conversive, well-hydrated, well- nourished female in no acute distress
Mrs. Ferguson is a pleasant, 36-year-old woman
Alert, appropriate affect, excellent historian
Mental status was normal
She may need further psychological evaluation and counseling. Depression likely
The mighty Mayo machine spit Hadley back out into the oncoming winter with nothing certain to wrap around herself. The urine test for copper had been normal and her eyes had revealed no K-F rings, so Wilson’s disease was off the table. John flew out to be with her for her last days there and she was discharged with the following report:
EMG showed poor activation of upper and lower extremity muscles suggestive of an upper motor neuron process. There is no evidence of anterior horn cell involvement or any neuropathy. Our initial impression was a Parkinson plus syndrome with upper motor neuron findings. However thorough evaluation did not demonstrate any Parkinsonism. There are inconstancies in her examination, which points to a functional overlay. At this point I think that she has an upper motor neuron syndrome of undetermined etiology with functional overlay.
She will benefit from PT. She is open to be evaluated by behavioral psychologist close to her home to explore a psychological basis of functional overlay.
#1 Upper Motor Neuron syndrome of undermined etiology
Hadley returned to Missoula depleted, confused, profoundly distressed and wishing she’d never gone to Rochester. Her Mayo experience had eroded her faith in the medical establishment, and once again, she was filled with self-doubt. If she was really seriously ill, why were so many doctors conflicted about the diagnosis? she wondered. Could she have made herself sick?
As the Montana winter deepened, she struggled with her painting projects. Dr. Reid agreed with her that she should go back on the levodopa because it was clearly of some benefit to her movement. On New Year’s Eve, she was terrified when she experienced some cognitive confusion: sitting in front of her dinner plate, she couldn’t remember which hand to hold her knife and fork in and how to use them.
On the phone one day Hadley said to me, “Well, whatever it is, they’ll find out when they autopsy my brain, I guess.” I realized she was at her lowest point yet. When she said she might start writing down her thoughts, I encouraged her.
None of us knows our fate; I just happen to be in a place where people are trying to predict mine and it’s all over the map. It’s terrifying. If my unknown disease had a name, I would have something to fight. I have to decide that Unknown Disease is my fight. This is hard. I am not there or even close to that yet. My only hope is that someday, my experience will provide answers that will help doctors understand better this unknown disease, so someone else will have a name for their disease. I have to believe there’s a reason I’m going through this, that the reason is beyond myself and is a key to helping others.
Hadley wrote a letter to her MDS, Dr. Youngman. Even though she wouldn’t send it, she found relief in the exercise.
I don’t believe I have motor neuron disease. When you gave me that diagnosis, my instincts were jumping up and down, waving wildly, holding up signs that said STOP! WRONG WAY! I still believe I have a parkinsonism. I believe you were right about MSA or atypical Parkinson’s and that someday you will have that confirmed. I think there is a lot in this world that relies on data and facts that may not be the same in every situation, and in those cases we have to step out and consider things we can’t see. I think you and I both lost some of our trust in ourselves in this process.
I wonder how things might have been different if you had given me some real thought that last day I saw you, if you had talked with me about the reasons for the abrupt shift in diagnosis to motor neuron disease, or even just said, “I really don’t know; motor neuron disease looks like what it could be, but let’s keep an open mind over the next 6 months to a year.” If you’d said that, I probably could have avoided the whole ordeal at the Mayo, which has only confused my situation further. Instead, shifting my diagnosis has derailed me from getting help, from feeling optimistic, from wanting to face things head on and make the most of life. It has taken everything away from me that was helpful. You left me stranded and I had to fend for myself. It was sudden, without warning, and then you were done, gone.
On another day, Hadley wrote:
The financial burden of my health is hard to ignore. I feel a responsibility to take care of those burdens. It is because of my medical situation that we struggle every month to stay on top of our bills. We’re working so hard and at some point there is only so much we can do. What was I thinking, saying yes to the projects on my plate? I am digging myself into a deep hole and I am worried I won’t get out of it.
In her journal entry, Hadley describes the quadruple whammy of her situation: feeling her body failing, being separated from the creative work she loves, letting her family and clients down and racking up medical expenses. Because of her pre-existing condition from birth, pulmonary stenosis, her only choice for health insurance was a state plan with a very high deductible. In 2009, before she was diagnosed with Parkinson’s, she and John together had earned plenty from her painting and his law practice and were easily able to meet all their expenses. But Hadley’s productivity fell as her health worsened and with all the medical testing, bills piled up. On the last day of 2009, she had had an episode of incontinence that, considered together with her nerve pain, had indicated the need for two emergency MRIs. Because she hadn’t yet met her health insurance deductible for the year 2009, by the beginning of 2010, she and John owed over $11,000 in medical expenses. As the designated bill-payer in their household, Hadley became increasingly anxious about their financial situation. John was working as hard as he could, but in 2010, Hadley earned less than a quarter of what she’d earned the year before. She tried to solve the money problem without worrying John by putting some of their expenses on credit cards and letting a few bills go. Occasionally, she would trade a painting for professional services, like therapy. In 2011, she had her most successful year yet, earning more than double her 2010 income, and it seemed as though they were getting back on track. But debts still dogged them and Hadley started dreading the mail when it came. Finally, in 2012 while she was at the Mayo Clinic, John went through the mail and saw the many past due and collection notices. On his own, he decided to have their mail forwarded to a P.O. box so that Hadley would no longer have the stress of looking at the bills. Hadley appreciated that he never made her feel guilty about the debts and from then on, they’ve worked together on their finances. But the question of how they would manage Hadley’s medical expenses with her reduced income still plagued them. With partisan battles raging over Obamacare throughout 2012, Hadley held onto the hope that she would be one of those who would significantly benefit from the new insurance laws.
In late February 2012, Hadley was clearing out her medicine cabinet, perhaps as a way of uncluttering her mind. She ran across the levodopa that Dr. Youngman had prescribed at her appointment nearly a year ago, which she’d never taken. Levodopa medication is formulated with a combination of levodopa, the chemical that replenishes dopamine, and carbidopa, an agent that counteracts levodopa’s side effect of nausea. The medication comes in many ratios of carbidopa/levodopa and most patients are sensitive to the differences. While Hadley had taken medication with ratios of 10/100 and 25/250 carbidopa/levodopa without much benefit and a lot of nausea, she hadn’t taken the 25/100 formula that Dr. Youngman had prescribed. On a whim, she decided to try it. Within a few days, she felt a remarkable change.
“It’s how I felt a year ago,” she told me on the phone. “My energy’s back. I can’t believe it! I feel like I could make it up Mt. Sentinel. And camping sounds fun to me. Maybe I only have Parkinson’s, after all!”
I had just awakened and was still in bed; I sat up when I heard the excitement in her voice. “Maybe you do only have Parkinson’s!” I said. “Wouldn’t that be amazing?”
In my head, I quickly tried to rationalize why this particular ratio of carbidopa/levodopa would make a profound difference in how she felt. Could it be that the smaller proportion of carbidopa in the prescriptions she’d taken previously had made the side effects from the levodopa overwhelming for her body? The 25/100’s she was now taking was the formulation I had been taking for three years with great results. Her general improvement seemed explainable by the change in meds, I reasoned, pushing back the doubts; but what about her autonomic problems, like urinary retention and orthostatic hypotension, and…? I stayed quiet. I knew Hadley probably heard her own chorus of doubting voices. But she seized this remarkable shift with gusto. She posted the new development on our Parkinson’s Facebook page and our group responded joyfully and thoughtfully. “We are all unique,” one person wrote. “I don’t see how they can clinically lump us together for treatment. You are a great example of this.”
Hope can burn so brightly it hurts, but it’s hard to look away from. Hadley’s reprieve was short-lived.