It was a drizzly August day when I met Morgan Amanda Fritzlen in the lobby of the Loews Regency Hotel on Park Avenue. I had been corresponding with Morgan Amanda for three years at this point but we’d never met in person. We’d spoken on the phone countless times, each conversation lasting hours. Her equally gregarious and detailed e-mails usually ended with a self-deprecating apology for sending an anthology instead of a letter. I felt I knew her reasonably well, as epistolary partners go, by this time. Still, the person who greeted me somehow looked entirely different than the mental image I’d created.
Part of it may have stemmed from the fact that I’d bicycled through Midtown traffic during rush hour, ending up hot, sticky, and ultimately drenched in rain. I looked so scraggly by the time I arrived, soggy helmet in hand, that the hotel doorman gave me a skeptical once-over before reluctantly opening the door. Morgan Amanda, on the other hand, was immaculately dressed in a sweetly prim flowered dress of pale pink with a white crocheted sweater and matching purse. She looked like she was ready for a mint julep after church rather than a bone marrow transplant evaluation at Memorial Sloan Kettering.
Delicately featured, with nearly translucent porcelain skin, Morgan Amanda seemed the epitome of quiet, well-mannered Southern graciousness. Though she hadn’t danced ballet since childhood, she retained the willowy grace of a ballerina—slender neck, lithe torso, and delicate, sinewy movements of her limbs. From her extensive medical history and concomitant battles with the medical system, I must have expected someone more pugnacious and bruised. But she exuded a genteel reserve, an unpretentious sweetness that was both understated and instantly likable. (Though she did e-mail me the next day to inform me that what might have appeared demure was actually a severe underdosing of her daily caffeine and that her downing of a Diet Coke when we were together was strictly for neuro-stimulatory purposes.)
We discussed the latest in her medical saga, as well as her current foray into the African American literary canon: The Bluest Eye, Sula, I Know Why the Caged Bird Sings. Morgan Amanda was still living in Atlanta but she had been traveling extensively to the Washington, DC, area for medical care at the National Institutes of Health and at Johns Hopkins medical center. At this point, the working diagnosis was Neuro-Behçet’s disease (pronounced be-SHET’s), an autoimmune disease in which the body’s antibodies attack its own blood vessels. This was on top of Ehlers-Danlos syndrome, the connective tissue disease that had also been diagnosed, which weakened the collagen throughout her body. Her clinical condition relapsed frequently and she was spending nearly as much time in hospitals and doctors’ offices as she was in school.
Morgan Amanda was receiving ongoing plasmapheresis to keep down the level of antibodies, but the procedure—meant to be temporizing but which in her case was ongoing—was fraught with infections and blood clots. The autoantibodies from the Neuro-Behçet’s, in addition to causing strokes and swollen joints, were decimating her red blood cells. Her bone marrow was unable to regenerate sufficient red cells for survival, so she had become dependent upon regular blood transfusions.
Both the transfusions and the plasmapheresis required inserting catheters in her veins, which had become so scarred from overuse that they were essentially unusable. The doctors had to dig deeper and more aggressively in order to implant the necessary catheters. In one half-year period she was hospitalized four times for massive infections from all the procedures. One of these episodes was complicated by acute kidney failure from the toxicity of the big-gun antibiotics. Nevertheless, she wrote to me in an e-mail at the time, “I am still counting the abundant blessings in my life. I consider myself a realist, but I must have a ridiculous sense of optimism because I continue to pursue the medical care that will allow me to live and to live as fully as I can. Not everyone would choose what I have chosen, but that is the beauty of free will. For that and for everything and everyone else in my life, I am exceedingly grateful.”
Morgan Amanda was still convinced that a complete ablation of her bone marrow (with a subsequent bone marrow transplant) was the only thing that held out hope for her unremitting autoimmune dysfunction. She was pursuing evaluations in Seattle and New York, as well as in DC—anywhere that would consider her.
After Juliet had helped Morgan Amanda obtain medical evaluations at the National Institutes of Health, they worked together for another few months. But these months were strained. Morgan Amanda was convinced that Neuro-Behçet’s explained everything, but Juliet was still skeptical. Morgan Amanda’s list of medications was multiplying, and she was requiring ever higher doses of pain medications to treat her joint pain. She insisted on continuing the plasmapheresis as well as the immunosuppressive infusions, and was talking about possibly getting intrathecal treatments—medications delivered directly into the spinal canal.
“She wanted to pursue extremely high-dose, high-risk treatments,” Juliet said, and this was not sitting well with her. The treatments carried grave side effects and Juliet could not be sure which of her patient’s symptoms were from the native disease and which were caused by the treatments.
“I have to believe things will work out as they should,” Morgan Amanda wrote to me after our meeting that August, “and I look forward to hearing from the Sloan Kettering team in early September and meeting with the Seattle team in mid-September. I will conclude this paragraph with the best news I received in New York: I have up to 28 potential matches in the bone marrow registry!! What an enormous privilege.”
Morgan Amanda continued to push for the bone marrow transplant and Juliet was increasingly concerned about the toxic side effects of the treatments. At their monthly medical visits, Juliet wanted to focus on polypharmacy, drug interactions, and damaging side effects. Morgan Amanda, however, wanted to spend the visits discussing the research papers on Neuro-Behçet’s and bone marrow transplants that she came armed with. The incongruity of their respective agendas became increasingly difficult to navigate.
“This diagnosis of Neuro-Behçet’s has completely changed my understanding of my health issues over the years,” Morgan Amanda wrote to me during the time I was writing the initial chapters of this book. “To be frank, it has changed my entire life—for the better, I believe. Knowledge is power, and the devil you know is better than the devil you don’t.” Then she added, with a winking emoji, “Clichés are cliché for a reason, right? Anyway, I wanted to share that with you, as I feel it changes my story. Hindsight is always 20/20—and there I go again with the clichés!”
In my conversations with Juliet, she struck me as the type of doctor who goes the extra mile to be empathetic with her patients, and I wasn’t surprised to learn that many doctors in her community refer to her the patients who have unique needs. Juliet thinks deeply about her patients and is passionate about medicine. Her patients have her personal phone number and know they can call her any time.
“While I usually am very collaborative in my approach,” Juliet wrote to me, “Morgan Amanda wanted to try therapies that were unproven for diagnoses that were not definitive, and she wanted me to be her partner in writing orders for these treatments.”
The final breakup was initiated by Morgan Amanda. At their most recent visit, Juliet had proposed tapering off some of the medications. Because the medications carried such wide-ranging side effects, Juliet thought it critical to figure out where the symptoms would settle without the assortment of meds causing their own symptoms.
When Morgan Amanda arrived at what would be their last visit, she announced that she had made the decision to leave. She needed a doctor who was more on the same page with her. “It’s a battle for me to be under your care,” Morgan Amanda said, and Juliet had to agree. It was a battle for both of them. Nevertheless, parting was very emotional—after all, they’d been through so much together. “You are a person I could be friends with,” Morgan Amanda said to her doctor, with tears spilling down her cheeks. “But this isn’t the doctor-patient relationship I want.”
“When she left my practice,” Juliet told me, “it was a painful separation for me. I had invested an extraordinary amount of energy in her care. At the same time, I recognized that she had made the correct decision.” The two women did stay in touch, at least online. Things were cordial, and they connected over interesting articles and books. For medical privacy reasons, Juliet did not probe into the ongoing care with her new doctors, though Morgan Amanda did update her periodically.
“One lesson learned,” Juliet wrote to me later, “is that perhaps I should have recommended that she see another physician sooner, though I did not know who to point her toward. So, why did I stay? On a personal level, Morgan Amanda was an extremely compelling person—interesting, witty, beautiful, and articulate. I bonded with her over her interest in books and her sense of humor. She made a tremendous impact because of her exceptional qualities. She was also a wonderful friend and advocate for many people in the Ehlers-Danlos community. I very much wanted to help Morgan Amanda, but in the end I was terrified that she could die as a result of her treatment, and I did not want to be the person responsible for writing those treatment orders.”
I understood the terrible quandary Juliet faced. As a physician, you want to do the right thing for your patient. When your patient requests something you are sure is harmful, it is agonizing—do you do what the patient wants or what you think is right? From day one in medical school, we are inculcated with the idea “First, do no harm.” This is the very backbone of medicine. However, I also appreciated Morgan Amanda’s desperation. And so did Juliet. “From Morgan Amanda’s standpoint,” Juliet observed, “her quality of life was very poor and she was willing to take huge risks in an attempt to improve it. Perhaps I never could fully understand this perspective.”
As a writer, I had a unique opportunity to get to know these two extraordinary women. I was moved by their honesty and generosity. Hearing their two sides of the same events illustrated how complicated any relationship can be, but especially so when the unpredictability and vulnerability of illness are mixed in. I felt privileged to listen in on the very hard work of being a patient and the tremendous challenges of being a physician. But it was also uncomfortable because real life was playing out. This was not fiction, or even a thirdhand war story. A gap in communication with Morgan Amanda usually meant hospitalizations and medical setbacks. An e-mail would then arrive with a comprehensive, single-spaced summary at a level of detail on par with a research journal. Though the update would inevitably end with a comment such as “Well, I’ve done it again—written a novel of an e-mail when I intended a brief reply!”
After my meeting with Morgan Amanda in New York, I threw myself into the meat of writing this book. It began with the story of Juliet and Morgan Amanda, and I had actually written their chapters first, so I put that aside while I dug into the research and stories for the other chapters. It was a full year before I finally got the other chapters caught up and was ready to pull the whole book together. My editor suggested I interview Juliet and Morgan Amanda again, now that some time had passed since their split, to see how they might reflect back on lessons learned.
I e-mailed them both but didn’t hear back from either. The silence puzzled me, as both were ardent epistolarians and natural writers. Finally I received a reply from Juliet. She apologized for the delay and said she’d needed some time to compose her thoughts. She’d attached a letter for me, which I opened with some amount of trepidation. It was two pages—single-spaced.
“Tragically,” Juliet wrote, “I learned that Morgan Amanda died last month. Her mother contacted me to let me know. She had developed gastrointestinal bleeding and a colectomy was recommended but she declined, after having been through so much medical care and treatment.”
It was like a soundless explosion fracturing off the page and I shivered as the reality of her words sunk in. How could . . .? How did . . .? It just didn’t seem possible. I mean I knew, intellectually, that Morgan Amanda had a severe illness and that she was receiving treatments with frightening risk profiles. Yet her voice was so singularly imbued with optimism and confidence that it was hard to imagine that anything could get the best of Morgan Amanda Fritzlen.
I read the letter again and again, sadness spilling over in great pressing waves. In the everyday humdrum of the ordinary medical world we can sometimes lull ourselves into thinking that we have this beast licked, or that at least we’ve defanged the worst of it. But illness retains its ruthless talents. It drives me to fury to see it pillage. We can best you, I want to spit back, buttressed by the armada of medical research at our flanks. But more than the anger, more than the humbling, there’s just sorrow. Lonely, unanswerable sorrow. How can a life that was so vital, so vibrant, be gone?
After Morgan Amanda left Juliet’s care, she experienced a few months of stability. It was during that window that she and I had met in Manhattan. But after that, the illness flared with a vengeance. The autoantibodies of the Neuro-Behçet’s attacked her intestines, the walls of which were already compromised by weakened collagen from the Ehlers-Danlos.
The antibodies corroded the blood vessels lining the gut, causing these to bleed internally. The situation was complicated by the fact that Morgan Amanda was also on anticoagulants (blood thinners) because of her repeated blood clots. The combination of anticoagulants and eroding blood vessels is treacherous. Stopping the anticoagulants risked a life-threatening blood clot. Continuing the anticoagulants risked all-out hemorrhage.
“By the time I got her to the ER,” her mother told me about her first episode of bleeding, “her hemoglobin was down to 3.” Morgan Amanda had lost about three-quarters of her blood supply. The ER doctor at the time had said, “I can’t believe she’s not dead.”
Morgan Amanda underwent emergency surgery but the bleeding colon could barely be repaired because the tissue was so fragile. She spent three rocky weeks in the ICU and scarcely managed to squeak by.
The months that followed could only be described as a relentless pounding by the illness. The intestinal bleeding repeated three more times. The extensive blood loss caused dizziness, and several times Morgan Amanda fell. The compression fracture of her spine from the most serious fall chipped away at her exquisite dancer’s carriage. Pain became an ever-more tormenting facet of her life.
The Neuro-Behçet’s eroded her vision. It was January when Morgan Amanda realized she couldn’t see the street signs. It became clear that it was not safe for her to drive, and she had to give up her source of independent travel. Her vision steadily deteriorated until she could no longer watch TV and had to struggle to see the numbers on her cell phone to call her friends. For a bibliophile, losing the ability to read a book is perhaps the cruelest punishment imaginable.
Each time she ended up in the emergency room with intestinal bleeding, the surgeon told her she needed to have the colon removed, that piecemeal repair of the friable tissue didn’t even rise to the level of a Band-Aid repair. But the idea of a colostomy bag, on top of everything else, was just too much to contemplate.
On the fourth bleed, the surgeon was adamant: removal of the colon was the only option to prevent complete exsanguination. But it was not a treatment to be taken lightly; in her weakened state, the surgery would be exceedingly risky. But not operating was also risky. By this point, Morgan Amanda was receiving plasmapheresis three times per week, in addition to infusions of cyclophosphamide. She had to administer bags of IV saline at home to keep herself appropriately hydrated. Because her blood count was so low (even before the episodes of bleeding), she needed ongoing blood transfusions. She was taking close to forty medications and was constantly traveling back and forth to doctors’ appointments. The medical maintenance was already overwhelming. Contemplating a colostomy was just too much.
“How will I ever take care of it?” Morgan Amanda asked. There were days when she couldn’t even wear shoes because the skin on her swollen feet was breaking down. An inadvertent jiggle of her mattress could cause excruciating pain. “How,” she asked, “can I ever hold a job? How can I ever give back to the world that has given me so much?”
Morgan Amanda could not gird herself for yet another major surgery and yet another medical issue to contend with. She turned to her parents and requested palliative care. After twenty-six days in the hospital she moved to a hospice. It took two full weeks for the hospice team to get her pain under control, but she was finally at peace. A week later, Morgan Amanda died with her parents at her side, two weeks shy of her twenty-ninth birthday.
Shortly after completing this book, I was cleaning out a drawer full of papers. Among old IRS letters, crumpled but ever-optimistic to-do lists, and expired airline boarding passes, I came across a handwritten note on ivory card stock. The handwriting was tiny but neat, and filled every available space on the page. I scanned the text quickly—it was a thank-you note from someone I must have sent a copy of my earlier book to. The text ran flush against the bottom of the card so I couldn’t read the scrawl of signature that was squeezed into the remaining nanometer of space. But it was a lovely letter, and I was touched by the author’s kind words. I hunted for identifying information on the envelope but there was no name, only a street address in uncolored embossed letters. Elegant, I thought, but definitely not practical. Not enough contrast for me to read it, even with my reading glasses.
I examined the card again, and embossed on the front of the card—also in uncontrasted ivory letters—was an elegant monogram. I’d initially thought it was just an elaborately whorled design so didn’t pay much attention, but now I could make out a sinuous F in the middle. And then I saw the smaller cursive M and A on either side of the F, the loops of all three joining in an old-fashioned calligraphic swirl.
MAF! It suddenly all fit together. I grabbed the envelope and squinted hard at the embossed address. Atlanta, Georgia—though it was honestly easier to feel than to read. I held the card under the brightest light I could find. Now that I knew what I was looking for, the minuscule scrawled signature had the topography of the words “Morgan Amanda.”
I had completely forgotten about this letter! She had written it shortly after our meeting in New York, and I’d secured it in a drawer so as not to lose it, but it unfortunately got buried under a year’s worth of paper sediment. I remembered being impressed that she’d written a formal thank-you both for our meeting and for the book I’d sent her some months earlier. I wasn’t surprised, of course, by her attention to proper etiquette, but in an age awash with junk mail and spam, a handwritten note on monogrammed ivory stationery stands out.
“We can’t have it all,” she wrote to me in that card, “but we can try and succeed as long as we know and remember why we do it (and admit when we don’t!)” That struck me as particularly emblematic of her approach to her life and to her illness. She also touched on the writing that she was working on and quoted Frida Kahlo: “I never painted dreams or nightmares. I paint my own reality.” Then, so as not to take herself too seriously, she added a PS with an arrow that pointed to her elaborately looped monogram on the front. “PS: Isn’t my MFA monogram hilarious? MFA—Master’s in Fine Arts. Ha!” It was a standard-size thank-you card, but in many ways it personified Morgan Amanda. She had taken a small canvas and crammed it with as much life as she could. Every inch was filled with her humor, insights, generosity, and passion. Her life was not as long as it should have been, but she packed it to full capacity with everything she had.