Importance Score: 42 / 100 🔵
An Unexpected Engagement Amidst a Health Crisis
The phone call to my parents announcing our engagement was met with an unexpected question from my father to my mother: “Is she pregnant?” At 41, it was a logical query, yet the reality was far more grave. Pregnancy was not the reason for the sudden engagement; instead, I was facing a terminal illness. Just a month prior to receiving a devastating diagnosis, Troy and I decided to get engaged. This was not a rushed decision; we had been a couple for eight years, cohabitating for seven. Marriage had been a topic of discussion, but personal reservations had always held us back.
Hesitations and Shifting Perspectives on Marriage
For me, as a bisexual woman, the prospect of marrying a man felt like a dilution of my queer identity. Troy, influenced by his parents’ difficult divorce, had long dismissed marriage as an institution for himself. Furthermore, our choice not to have children diminished the perceived necessity of marriage in our minds. Professionally, being married could have been advantageous. As a Quaker pastor, congregations can sometimes be uneasy about employing an unmarried religious leader. However, career benefits alone did not seem like a sufficient impetus for us to wed.
Health Emergencies Prompt a Change of Heart
A series of escalating health crises served as the catalyst for altering our perspectives on marriage. Shortly after relocating from Atlanta to our new residence in North Carolina, I became acutely aware that something was seriously wrong. During a walk in our neighborhood, a speeding vehicle approached. Attempting to move out of harm’s way, I discovered I was unable to run; my muscles felt akin to marionette strings, moving involuntarily and erratically. This was particularly alarming given my history as a half-marathon runner.
Two Years of Medical Uncertainty
The ensuing two years involved consultations with numerous specialists. Sports medicine physicians and physical therapists prescribed remedies for persistent hip pain, expressing concern at my inability to rise onto my toes or descend stairs. Extensive blood work for genetic testing, four MRI scans, and an electromyography (EMG) – prematurely halted by a panic attack – were all part of the diagnostic process. The mounting medical evaluations were painful, financially burdensome, and increasingly indicated a singular, distressing conclusion: Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s disease.
Then, one morning, Troy declared his need to go to the hospital. His blood pressure had surged, accompanied by dizziness. “I’m afraid I might be having a stroke,” he confessed.
I rushed him to the emergency room entrance. By the time I parked the car and returned, medical staff had already ushered him into an examination room.
A White Lie in the Emergency Room
Without a moment’s hesitation, I fabricated a story to the receptionist at the front desk. “My husband is back there,” I asserted, “and I need to be with him.”
Acts of Protection and Shared Vulnerability
Upon reaching his room, I found Troy connected to medical equipment via numerous tubes. As a nurse prepared to insert an IV, Troy, aware of my lifelong phobia of needles, said, “Don’t look — they’re sticking me,” trying to shield me from distress. The nurse, surprised by his selfless act in his own moment of vulnerability, remarked, “He’s trying to protect you while he’s going through this!” “That’s what we do,” I responded.
After Troy was taken for a CT scan, I uncontrollably began to cry. A compassionate nurse offered a box of tissues. “We witness this daily,” she said gently. “It’s easy to overlook how challenging it can be.” “I understand,” I replied, “I am frequently in intensive care units for my profession. But it is profoundly different when it’s your own loved one.”
I contacted Deborah, a fellow Quaker pastor and friend, and informed her of our location. She promptly offered to come to the emergency room, an offer I gratefully accepted.
Navigating Medical Protocol as an Unmarried Partner
Emergency room personnel intermittently entered, posing questions. I could answer some, but others remained beyond my knowledge. Anxiety grew, fearing they might discern we were not legally married. I lacked information regarding Troy’s current medications and dosages. Despite not being legally authorized, I signed documents identifying myself as next-of-kin.
By the time Deborah arrived, Troy had returned to the room. Initial tests were promising, and medical staff intended to monitor him before discharge. I confessed to Deborah about misrepresenting our marital status to the receptionist. She understood immediately, even though truthfulness is a core Quaker value. “I would have acted identically,” she affirmed.
Decision For Marriage Amidst Uncertainty
Following a protracted and frightening day, we returned home. The medical professionals reassured us that seeking immediate care was the correct course of action and indicated they would adjust Troy’s blood pressure medication. I vowed to avoid such situations again. The urgency of having immediate access to each other and the ability to make critical medical decisions on the other’s behalf became paramount. We resolved to get married.
Perspectives on our decision varied; some viewed it as deeply romantic, others as purely pragmatic.
Confirming the Diagnosis: ALS
One month later, the definitive diagnosis arrived: ALS. Prior hope had lingered that it might be multiple sclerosis, a debilitating but manageable condition. ALS, or Lou Gehrig’s disease, however, is invariably fatal, with an average life expectancy of two to five years post-diagnosis. The prognosis entailed progressive muscle atrophy leading to eventual inability to swallow and breathe independently.
Wedding Plans in the Shadow of Illness
The day of the diagnosis was undeniably the worst of our existence, and the subsequent month offered little respite. A flurry of urgent tasks arose—new medications, securing an appointment at a specialized ALS clinic, informing and grieving with loved ones over countless phone calls. I composed my advance healthcare directive and planned my memorial service, requesting Deborah to officiate.
That autumn, we solemnized our marriage in a traditional Quaker ceremony. Friends and family journeyed from across the globe to participate in our celebration. My family traveled from Alaska, Troy’s from the Czech Republic, and a dear friend undertook a journey exceeding 24 hours from Singapore. No one wanted to miss this significant occasion.
A Celebration of Love and Community
For three days, our home resonated with laughter and joyous gatherings. My mobility was limited to using a cane, and I primarily remained seated in a chair on our deck, where loved ones congregated, sharing stories and offering support. On our wedding day, adorned in a self-made white dress, Troy and I proceeded to the Quaker meetinghouse. Quaker tradition foregoes a wedding officiant, grounded in the belief that divine union occurs directly between the couple, with the community serving as witness.
Our assembled friends and family gathered in the meetinghouse, engaging in silent Quaker worship. Troy and I exchanged vows in the stillness, and my sister performed “One Hand, One Heart” from “West Side Story.” Friends and family then rose to speak. A seminary friend proclaimed, “Ashley cannot be tamed!” Our families spoke of anticipating this day for many years and expressed my niece and nephew’s delight at gaining “Uncle Troy.”
Speaker after speaker conveyed personal reflections on my life and influence. While no direct mention of my diagnosis occurred, an unspoken awareness permeated the atmosphere—this occasion offered a poignant preview of my memorial service. Troy and I shared both laughter and tears as our community affirmed their love and pledged their unwavering support.
Post-Wedding Joy and Honeymoon Respite
Following the ceremony, everyone signed our beautifully designed marriage certificate, destined for framing and display in our home. Then, celebrations continued back at our house with food, drinks, and camaraderie. My brother curated a playlist specifically for the occasion, and we enjoyed almond-flavored wedding cake. The following day, we departed for our honeymoon—a week of tranquility on the North Carolina coast. After the preceding weeks’ whirlwind, quiet moments observing the ocean were profoundly restorative. We observed dolphins, snowy egrets, and fish leaping from the water. On our final day, we departed just before a hurricane made landfall.
The Unexpected Happiness of Marriage Amidst Decline
In the ensuing weeks, both Troy and I were surprised by the profound happiness marriage brought. We had underestimated its significance, but it proved invaluable. As my health progressively declined, the commitment solidified through marriage has been an anchor during increasingly challenging times. The future is uncertain, likely limited to a year or two. My mobility has diminished from a cane to a walker to a motorized wheelchair. I now rely on Troy’s assistance for dressing, bathing, and personal care. I am immensely grateful for his unwavering patience and lightheartedness as we navigate this journey.
Finding Beauty in Life’s Simplicity
Despite the encompassing challenges, our life remains filled with beauty. We spend extended periods on our back deck, identifying various bird species—blue jays, cardinals, robins, hawks, and brown thrashers. We savor delicious meals. After dinner, we admire the stars. Friends and family visit frequently; we welcome them with warmth, offering good food, cocktails, and shared laughter. Living with a terminal diagnosis is undeniably demanding, yet it also brings profound clarity. My paramount desire is to maximize time spent with cherished individuals.
Marriage: An Unexpected Ease
It is often said that marriage is arduous. Perhaps for many, this holds true. However, for me, being married to Troy represents the most effortless and natural aspect of my life.