When we called my parents to tell them we were engaged, my father said to my mother, “Is she pregnant?” I was 41, so this was a reasonable question. But I wasn’t pregnant. I was dying.
Troy and I got engaged one month before I received a terminal diagnosis. Getting engaged was not a hasty decision; we had been together for eight years and living together for seven. We had talked about getting married over the years, but we each had our own reasons not to.
For me, as a woman who is bisexual, marrying a man felt like giving up part of my queer identity. Troy had long decided that marriage wasn’t for him, after his parents’ terrible divorce. And since we had chosen not to have children, it didn’t seem important.
Being married would have been good for me professionally. I am a Quaker pastor, and it can make congregations anxious to consider hiring an unmarried pastor. But for us, that didn’t seem like a good enough reason.
A series of health crises made us change our minds.
Shortly after we moved from Atlanta to our new house in North Carolina, I knew something was wrong. I was on a walk in our neighborhood when a car came speeding down the road. I tried to get out of the way but couldn’t run; my muscles felt like they were being jerked around on marionette strings. I used to run half marathons, so this was disconcerting.
Over the next two years, I saw endless specialists. Sports doctors and physical therapists prescribed medication for my aching hips and frowned when I couldn’t stand on tiptoes or go down stairs. They drew blood for DNA tests, and I had four M.R.I.s and an EMG that ended abruptly when I had a panic attack.
All of this was painful, expensive and pointing to one conclusion: I had A.L.S.
Then one morning, Troy said he needed to go to the hospital. His blood pressure had spiked, and he felt dizzy. He said, “I’m afraid I might be having a stroke.”
I dropped him off at the emergency entrance, and by the time I returned from parking, they had already taken him into an examination room.
Without hesitation, I lied to the woman at the front desk. “My husband is back there,” I said, “and I need to be with him.”
When I got to his room, he had tubes connected to him in all directions. A nurse was about to insert an IV, and Troy said, “Don’t look — they’re sticking me,” because I have a lifelong fear of needles.
The nurse looked up in surprise and said, “He’s trying to protect you while he’s going through this!”
“That’s what we do,” I said.
After they rolled him away for a CT scan, I burst into tears. A nurse brought me a box of tissues. “We see this every day,” she said. “It’s easy to forget how hard it can be.”
“Oh, I do too,” I said. “I’m in and out of I.C.U.s for my job. But it’s different when it’s your person.”
I called a friend, Deborah, another Quaker pastor, and told her where we were. She asked if I wanted her to come to the E.R., and I said yes.
E.R. staff came in and out, asking me questions. Some I could answer and some I could not. It made me anxious that they might know we were not married. I didn’t know what medication Troy had taken that day or the dosages. I signed documents as the next-of-kin even though I wasn’t.
By the time Deborah arrived, Troy was back in the room with me. The initial tests had come back favorably, and they were keeping an eye on him before sending us home.
I told Deborah that I had lied to the person at the front desk, and she understood, even though as Quakers we value speaking the truth.
“I would have done the same thing,” she said.
After a long, terrifying day, we went home. The doctors reassured us that we had done the right thing by coming in, and they would adjust Troy’s blood pressure medication.
I never wanted to be in that position again. We needed to have access to each other and be able to make medical decisions for the other, so we decided to get married.
