When I conceived of this section of my new website, I felt it was important to feature the good works of “celebrities,” for lack of a better word, but also to write about the experiences, both triumphant and challenging, of people with whom I have a relationship. And, so…drumroll, please, I introduce you to my friend Nora Pierson. She’s a beautiful lady, inside and out.
Nora’s story is not so much about a creative idea launched in the face the pandemic. Rather, her account is a reminder of how life calls us to walk through thorny, challenging terrain, when things are going well in the world, and when they are not. Ideally, for all of us, a heroe’s journey commences with an unyielding sense of self and an ability to tend the embers of optimism for brighter days ahead. My hope is that hearing about Nora’s life will challenge readers to be more supportive of the many people who suffer from hard-to-diagnose chronic conditions. Likewise, during the social calamity that is Covid-19, I encourage all of us to be especially mindful of showing up for single people—and really any folks who feel they in economic, physical, or emotional peril. Now is not the time to look away from the suffering of others.
Nora and I met 15 or more years ago through a mutual friend—I was younger and thinner and she was even younger and thinner than I. She is just the kind of young person I like to be around—smart, interesting, introspective, progressive, artistic, and kind. At the time, she was working as a model and actress in the City and was every bit the Scandinavian beauty that her surname implies. Although from New York, she had a robust case of wander lust, and ended up living and working in Hawaii and California, before returning to the Empire State. Although not without bumps along the way, she used these exotic ports-of-call for inner work and self-discovery. However, a few years ago things changed.
In 2017, she started exhibiting vague symptoms that could be associated with any number of conditions: muscle weakness, involuntary movements, balance issues, pain, and lethargy. In a scenario that will ring true to many people—particularly women—she saw a whole range of medical specialists including physicians in neurology, gastroenterology, cardiology, infectious, and more. According to Nora, the consensus was the same: the symptoms were likely psychosomatic and that she should lean into psychotherapy and find a psychiatrist. This went on for two years. I know so many women, mostly with autoimmune disorders, who have a similarly tortured road on the way to a conclusive diagnosis.
My own Mother suffered for a decade or more with diffuse symptoms, back in the Dark Ages. Without the benefit of modern MRI’s and CT scans, my Mother’s doctors used a process of elimination to diagnose her with Multiple Sclerosis. At the end of the day, this was Nora’s diagnosis, too. She recalls, “I finally got my diagnosis after visiting my third neurologist. Although previous MRI’s confirmed that I had 30+ lesions on my brain (a tell-tale sign of MS), it was only after a lumbar puncture that they definitively made the official diagnosis.” While I imagine there is some relief in receiving a final diagnosis, after that one must go about the task of figuring out how to live with a “new normal.”
MS is still a vexing disease—there are a range of experiences patients have in terms of the severity, consistency, and progression of symptoms. My own Mother’s case was manageable (sort of) for a while, but she fell into the throes of the disease around her 40th birthday. At that time, there were no treatments for her, especially heartbreaking news to hear. Fortunately, there are a now a range of medications available to address MS symptoms. The disease, however, is incurable. Today, Nora is on 4 different prescriptions with varying degrees of effectiveness. She adds, “Sometimes it feels like a game of whack a mole—you hit it and find something that helps. Other times, you don’t.” (For the uninitiated in Atlantic City boardwalk pastimes, whack-a-mole is an arcade game where one uses a hammer to hit a “mole” that bobs from one gameboard hole to another.)
When I asked the newly single Nora about how MS has impacted her relationships, she offered considerable food for thought for those of us who deal with friends and family members coping with disabilities or problematic medical conditions. She explains, “People make assumptions about what a sick person looks like. Certain symptoms are not immediately obvious (like fatigue and pain). I sometimes feel like people think I’m faking it. Social media reinforces those assumptions, when my friends see me posting pictures special events or trips to the City. Like everyone else, I’m circulating the most flattering pictures! They don’t realize the energy I have to exert to engage in regular daily activities or special social events; it often takes me days to recover. I regularly find that I must cancel plans with friends, when I’m not well. Because I’ve become a rather unreliable companion, people sort of drift away. And so, many friends just don’t reach out to me much, anymore.” Obviously as we are all “Sheltering in Place,” the social isolation she—and we—feel has been compounded.
In addition to relationship challenges, Nora faces profound financial consequences due to her disease. Now unable to work, she receives a modest stipend through the federal food stamp program and, fortunately, her medical bills are covered under Medicaid. The state and national “safety nets” offering income maintenance are particularly inhospitable to single women without children.
Nora now lives in Ulster County, in upstate New York. Although she adores nature, I know she misses the excitement of New York. She visits regularly for medical check-ups with her team at NYU Langone Center. Accommodations for those with mobility issues are lacking in both town and country, even with the passage of the Americans with Disability Act, in 1990. As one who nursed broken ankles in the past, I’m well-aware of the transportation obstacles for someone not entirely mobile.
As we were winding down our conversation, I asked Nora if there were any gifts she’d received from living with MS. She recalls, “When I first started having symptoms, I suddenly started painting. I had never painted or considered myself to be a visual artist. But somehow, one of the pesky lesions on my brain has made me an artist. I’ve learned to slow down and appreciate smaller things in life. My favorite gift has been the discovery of my internal badass. For most of my life I was always concerned with what others thought of me. I lived in fear and was a chronic people pleaser—now I just don’t care. This is me, take it or leave it. While some of my friends are no longer in my life, I have been amazed how others who’ve come out of the woodwork to support me. This whole experience has put me in ‘survival mode;’ it’s really forcing me to look at what I want in life.”
Nora closed by musing about how her battle with MS has found her strangely prepared for the pandemic. “To be honest, I’ve been isolated and semi-quarantined for over a year, due to my symptoms. I’ve faced down fears of financial loss and getting sick.” Nora’s sense of purpose comes from the vision of being able to provide emotional support for those newly diagnosed with Multiple Sclerosis, moving forward. Hers is a voice worth listening to.
My admiration for Nora is clear. I appreciate her transparency about dealing with MS (a condition many attempt to “hide”) and her continued optimism about realizing a better future. She is a terrific animal advocate and launched a nonprofit venture, Out of the Dorm Closet, to support LGBTQIA students. So, I bow to her on making lemonade out of a really sour lemons. And I thank her for sharing her story.