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.
In1969, Elizabeth Kubler-Ross, a Swiss-American psychiatrist, introduced the hypothesis that people, when faced with a terrible diagnosis, will often pass though five emotional stages including, but not limited to, denial, anger, bargaining, depression and acceptance. A scientist in our Parkinson’s Facebook group, Sara Riggare, has come up with another version of the stages of grief that describes the pro-activeness I associate with my friends with PD: shock (at hearing he news); sorrow (mourning the future you won’t have); searching (for information); sharing (supporting your patient community); and shaping (creating a new future for yourself).
Judging by how quickly Hadley embraced her diagnosis and reached out to contribute to the PD cause, it would appear that she arrived at Rigarre’s sharing and shaping stages almost immediately. Perhaps because she had dealt with disturbing symptoms for years, she’d experienced denial, anger, depression, shock and sorrow before getting her diagnosis. From her narrative, we know she often was forced into denial of her illness because of the inconclusive, sometimes dismissive, feedback she received from doctors. Denial sometimes worked to manage her fear. When not in denial, however, she experienced depression not only because she lacked the energy she needed for work and family, but also because she knew something was very wrong with her health. She’d had a painfully long time to contemplate worst-case scenarios, so when she learned she had PD, it was hardly a shock; instead of thinking why me? — the question that would inevitably come up in Kubler-Ross’s anger stage — Hadley thought, I’m so lucky I don’t have a more terrible disease.
Something else besides her diagnosis ordeal allowed Hadley to arrive quickly at acceptance: the resilience that is part of her nature and was also nurtured by her life experience. As she bounced between different cultures, Hadley learned to observe and adjust to new situations, memorizing details that would help her fit in and focusing on positive experiences to maximize her comfort. She learned to accept frightening and unhappy experiences, as a teenager deeming them “character builders.” And then there was her body: how can we measure the long-term emotional (let alone physical) impact of open-heart surgery, of a collapsed lung or congestive heart failure? To the majority of us who’ve never fainted, it seems impossible that a person could become so familiar with “going out” that she could joke about it. Coping with the traumas affecting most of Hadley’s vital organs would require a robust relationship with fear. By the time she was in her twenties, she had developed a strong survival instinct, having learned, like a creature in the wild, to appear strong in times of weakness to protect her from more harm.
Striving to rise above her physical and emotional challenges has clearly served Hadley’s aspirations for a full and remarkably productive life. But there’s a cost to armoring up your already injured being. I learned this when I was 43, just a few years older than Hadley, during the relentlessly rainy winter of 1998 that put figure skater Tara Lipinski and Washington intern Monica Lewinsky on the world stage. The insomnia that had been chronic since my mid-twenties had become acute, I had gastrointestinal problems, my muscles burned. Despite consuming twice as much food as my six-foot-three husband, I was unable to gain much-needed weight and was plagued with a deep, gnawing hunger. Some days it was tough to even push a cart around the supermarket.
I told my new primary care physician, who seemed more thorough than my old one, that I believed years of sleep deprivation had finally caused me to “crash.” She was skeptical, and when every blood test she ordered came back normal, she declared that I was “as healthy as a horse. And,” she said smiling almost playfully, “rest assured that insomnia has never killed anyone.” I had heard this refrain before; now, it rang even more brutally false. She prescribed an anti-anxiety medication for sleep and then we were finished. There was nothing more she could do.
I consulted a sleep specialist who educated me about “sleep hygiene.” I followed his instructions faithfully: never do anything but sleep or have sex in your bed, make the room dark, don’t watch TV or have stimulating conversations before bed, exercise and get plenty of daylight beginning first thing in the morning. The most frustrating rule of good sleep hygiene was “don’t nap during the day.” It made me want to cry — I hadn’t been able to nap in twenty years. In my book, if I could nap, I wouldn’t have a sleep problem. Oh, to be able to attain the divine sensation of sleepiness! In fact, the more tired I was, the more awake I felt. In bed at night I had a buzz, as if an engine were keeping me hovering just above my mattress.
For my digestive problems, I saw a gastroenterologist who told me I had irritable bowel syndrome that would be fixed by eating more fiber. The added fiber, the kind that you stir into orange juice, made me feel like I’d ingested steel wool. Over two decades of seeking help for poor sleep and digestion, I had heard the one-size-fits-all prescriptions “fiber” and “sleep hygiene” so many times that they triggered in me a silent primal scream.
Later, after I was diagnosed with Parkinson’s, I would learn that sleep and G.I. disorders often precede a PD diagnosis by more than a decade. At the time though, I was scared. If I couldn’t sleep and couldn’t process food properly, how would I stay alive?
I had a loving and helpful husband, wonderful family and friends, and access to the best healthcare in San Francisco. Because Lewis and I owned our architecture firm, I had a very flexible work situtation. But with no doctor to guide me, I had no idea what I should do to get well. For more than a year, I awakened with one question: how will I take care of my children? I worked hard to hide my struggle from them, rising to fix breakfast before school and maintaining a cheerful countenance after school until they went to bed. I thought I was putting on a pretty good charade until one morning at breakfast, our nine-year-old burst into tears. I hugged her and asked her what was wrong, even though I was pretty sure I knew.
“I’m afraid you’ll die,” she sobbed.
I remember, although I felt as if I might in fact be dying, how at-the-ready my protective instincts were, how easily I called up my most reassuring tone. “No, no,” I told her. “I’m not going to die. I promise.”
Since no doctor could find a reason to think I was even sick, I felt fairly secure in my promise even though my body was telling me otherwise. Without a name to call my illness, though, I worried about how to explain it to friends, family, our kids’ carpools. To make matters worse, the medication my doctor had prescribed didn’t help me sleep and created a new problem: rebound anxiety. I became plagued with the fear that my intractable insomnia and G.I. problems were symptoms of mental illness that I wasn’t strong enough to overcome. I wondered: a generation ago, would what I was going through have been called a “nervous breakdown” — words gossiped across suburban fences? I tried to calm myself by meditating, but no amount of listening to “loving myself, healing myself” tapes could persuade me to feel compassionate toward my body — it had stolen my life for no medically apparent reason.
Then, like a miracle, I found a therapist who seemed to be compassion personified. He grasped immediately the seriousness of my illness, offering me not only a safe place to expose the enormity of my fear and distress but also practical solutions. He referred me to a psychiatrist who prescribed a medication for sleep that was not yet widely known in the U.S., one that for me was a magic bullet. He also recommended an integrative medicine doctor. It was the 1990’s, the decade in which integrative medicine began to gain legitimacy in the U.S. The new approach emphasized treating the whole person rather than just a disease, using traditional Western medicine in combination with selective “alternative” therapies to promote wellness.
Integrative medicine acknowledges that if a person feels unwell, they areunwell. Whereas my primary care physician looked past my wraithlike appearance and wasn’t concerned when I told her I felt like I was wasting away, my integrative doctor listened carefully to everything I described and told me, “You’re seriously depleted and things in your body have gotten out of balance.” He went on to explain the sympathetic and parasympathetic nervous systems: the sympathetic nervous system uses energy to keep us vigilant and responsive to emergencies, speeding up heart rate, increasing blood pressure and stopping digestion; the parasympathetic system works to counter the sympathetic system, kicking in when we’re eating, sleeping or meditating to help the body relax and conserve energy.
“Your sympathetic system is in overdrive and your parasympathetic system is unable to counter it. You’re stuck in emergency ‘fight or flight’ mode, causing inflammation, insomnia and anxiety. And the understandable fear you feel about what’s happening to you is further fueling your sympathetic nervous system.”
Fight or flight. He’d nailed it! His explanation made visceral sense to me: a bird, terrified and in the crosshairs of a powerful predator — my insomnia and the undefined forces that had caused it. He told me that it had taken me years to drive my body into this state and it would therefore take years for me to heal, but he was going to help me every step of the way. He launched an exhaustive study of my hormones and gut bacteria, tweaking them with medicine and supplements to restore balance. Very gradually, with his steady accompaniment, my health vastly improved. After a couple of years, I began to feel I could count on my body to be strong enough to support my busy life; my body, in turn, could rely on me to know how to take care of it.
This was doctoring at its very best. It could be argued that the first step in healing is feeling confident that you will be listened to and taken care of. Although all of us are grateful to be living in the age when most diseases are understood, technologies are advanced and treatments are plentiful, because we’re human, we sometimes wish for the days we’ve read about, when the village doctor knew and attended to his patients almost like family. Most patients don’t expect medical miracles from their doctors, but they do hope for these basic assurances from them: 1) I believe you when you tell me you are sick 2) I don’t know yet what’s ailing you, but I will do my best to find out and am going to share with you everything I learn 3) even if I can’t reach a clear diagnosis, I’m going to help you because you are my patient and I care about your health.
Because of this positive experience with my integrative physician, I was frustrated years later when he didn’t take a more investigative approach to my neurological symptoms. In retrospect though, I realized I’d come up against his limitations. He had told me early on that he’d suffered on and off for years from chronic fatigue syndrome; this no doubt drove his career as an expert on CFS and related conditions like mine. While he was able to “stand in my shoes” when I presented with symptoms he recognized, when I came to him with neurological abnormalities, instead of explaining that he didn’t know how to help, he defaulted to a paternalistic mode, telling me I was anxious about nothing.
Once, Hadley was a fellow Parkie and a kindred spirit. I understood we shared much more after I heard her health history, even though it’s much more complex than mine. Long before our Parkinson’s, we both suffered a kind of emotional and physical erosion that we worked very hard to keep from interfering with our lives. But it’s true of everyone that however well we’ve coped or covered up, whatever rational sense we’ve made of our histories and whatever we believe we’ve made peace with, our experiences have shaped who we are physiologically. Conversely, the bodies we are given help define who we are. How different is a person who’s never suffered a serious or chronic illness, whose body has never made them feel weak, ashamed, or afraid, from the many of us whose bodies speak loudly to us and on most days! The able-bodied often accuse the rest of us of being too attentive to our bodies, as if they’re children we’re spoiling. But I know this: like a child, when your body steps out of the room with a smile and no complaint, allowing you to turn your attention elsewhere, you’re thrilled to let it go.
I felt my friendship with Hadley deepen. I understood now that the pharmacologist at the party who’d questioned her Parkinson’s diagnosis had struck at the muck of doubt she still carried from a lifetime of feeling unseen by doctors. I saw vulnerability beneath her cheerful acceptance of her diagnosis, as if she was waiting for the other shoe to drop. Was her tentativeness just a habit? I wondered. Had she moved past acceptance into another stage of grief called “doubt”? I wanted to reassure her. Because I’m twenty-one years older, perhaps, I imagined I could help protect her from more uncertainty by advocating for her in ways I hadn’t known how to for my younger self.