By 1996, I was thirty. And while Lynn and I lived with the rhythm and comfort of a shared life, I hadn’t lived with her illness since birth. I wasn’t raised in its shadow. She was. I was still learning. Still catching up. And in many ways, still trying to forget what we were up against.
Occasionally, she would use an inhaler, but that didn’t seem to happen very frequently.
I drove her—or we drove together—to her clinic appointments in Chapel Hill. From Wilmington, that was a drive of over two hours. It happened, for the most part, only once a year.
They would check her oxygen saturation, take X-rays to see the scarring and the buildup of mucus in her chest.
Lynn was good about letting me sit in on every meeting, even in the examination room with the nurse and the doctor. Most of the time, we felt lucky. She was incredibly healthy for someone with such a serious disease.
Sometimes, I left the room when they needed to collect a mucus sample. Lynn understood. I had a weak stomach.
But even so, I asked a thousand questions. 'What’s that dark spot on the X-ray? Is that mucus or scarring?'
'Here’s some excess mucus that needs to be cleared,' the doctor might say, 'and here’s some scarring.'
'How do we clear it?' I’d ask. 'Have you learned how to do the tapping?' they'd respond.
'Yes, the physical therapist taught us,' I’d answer. But I was still full of worry.
The doctor would explain devices we could use. But Lynn would say, 'It doesn’t clear it out for me. I can tell it’s still there.' Then she’d turn to me and remind me, gently but firmly, 'I told you I needed help with it the other day.'
And I’d feel the guilt wash over me. “Oh God, Lynn, I’m sorry. I’m scared when you’re not well. It makes me feel helpless, and I hate that. But I’m trying. I really am.” I would then add, “Wait, that’s not good enough. I can NOT just be trying. I have to do whatever is possible.”
Then I’d add, with tears in my eyes, “I just want a normal life. You make me happy. I don’t want to lose you.”
“I know, sweetie,” she’d say. “I’ve had more time to process this.”
I wanted to be strong but the tears wouldn’t stop. “I love you, Lynn. I love you so much.”
I then looked at the doctor that conveyed a look of displaced anger, as if he was a cause of this or wasn’t doing enough… as if he ought to answer for why this was happening.
Then I sked the doctor, “So, how often should I do the tapping?“
'Fifteen to thirty minutes each evening,' came the reply.
And then the scarring—the thing I dreaded most. It was permanent. It made her lungs less elastic. It meant that even if they found a cure, some damage couldn’t be undone.
I could talk to clients at a psychiatric hospital about grief, loss and mental illness. Mostly I was helping people deal with non-physical problems. But this wasn’t that. This was a physical problem. This was personal. This was my life. This was Lynn.
The secret I didn’t want to face was that CF could take her from me. I pushed that thought away most days. But not in those clinic rooms. In those rooms, I had to look it in the eye.
The darkness in her lungs—visible in patches on the X-rays—felt like the darkness creeping into our lives.
Then came late 1996. Lynn had to be hospitalized. Her lung function was declining, and the doctors wanted to admit her for IV antibiotics.
They were trying a new combination of drugs—ones believed to be more effective in CF patients. People were living longer now, they said. But that didn’t make it less terrifying.
We waited in the hospital lobby, trying to be calm. I wasn’t. I couldn’t sit still. My stomach turned with anxiety.
When they called us in, I sat on the edge of her bed, holding her hand as they placed the IV. 'What’s that?' I asked the nurse.
'Just saline,' she said. 'The medications will come later.'
We sat quietly for a few moments. 'Do you want to play cards? Or read?' I asked.
She asked for a new book by Anne McCaffrey, her favorite fantasy author.
'I want to stay with you,' I said.
'I’m glad you’re here,' she replied.
'I’ll bring a book too,' I added. 'We’ll just be together.'
She smiled. 'That sounds good.'
She suggested I meet her friend Carolyn, who also had CF. 'You’ll like her,' she said. Carolyn was up here in Chapel Hill at this point.
'We’ll see her when you’re discharged,' I promised.
Later that evening, while Lynn was in the shower, a nurse knocked on the door and asked for her. They needed to change her dressing around the IV.
She’s in the shower,” I said. The nurse paused. I got up and said, “I’ll let her know.” This was a door that I alone would or could open.
No awkwardness. No explanations. No embarrassment. Concealing the view from anyone but myself,with the nurse waiting, I got up, opened the door to the bathroom and conveyed the message that the nurse needed to do something.
There was no veil of privacy between us anymore. We had already lived through enough—the bodily, the vulnerable, the raw. Her illness had already taken us into places most couples don’t talk about. This was simply part of it. A moment like any other.
And yet, it was meaningful. It signified a level of trust, of sacred familiarity. She wasn’t hiding. I wasn’t hiding. And no one - least of all the staff - treated our intimacy as strange or inappropriate. We weren’t legally married. But no one asked. They didn’t need to. Everyone in that room, on that unit, understood what love looked like; what a couple looked like.
That night, I stayed. Visiting hours had ended, but no one made me leave. I climbed into the bed beside her, gently moved the IV, and wrapped my arm around her.
A nurse opened the door to check in. She saw us, said nothing, and closed it again. There was a place for family members to stay but we were not disturbed.
Eventually, Lynn came home. And just like that, life returned to normal—or what passed for normal. And I held tighter to the fantasy that we had all the time in the world.