This is Not the Plan: Notes from an Unprepared Daughter

“Kings go here,” my dad said as we walked through the marbled halls of the Mayo Clinic in Rochester, Minnesota.

“Then you’re in the right place,” I said.

After a year of seeing a different neurologist with no answers, we’d finally made it to the place. The one you’re supposed to go to when nobody else can help. You don’t necessarily want to end up there, but you almost feel a little like celebrity-status by finally making the cut.

As we wound through the maze of underground hallways, our collective anxiety over what was to come was palpable. We wanted to know what was going on and we didn’t. Both were very true.

We got to the neurology waiting room on the 8th floor an hour early.

“Welcome to our living room,” said the couple sitting in the chairs near us.

We laughed. Nobody wants to be here. Everybody wants answers.

We were eventually called back and met with the first doctor, who did a thorough series of tests on my dad, poking and prodding his muscles to determine strength and sensation in different areas. She asked extensive questions.

And then she asked me if I’d noticed any differences in his speech, and I thought, “huh, I wonder why she’s asking that? That’s not a symptom of neuropathy.”

We moved on. We did more tests. She asked us to wait while she consulted with the primary neurologist. That doctor came in and redid some of the same tests. My palms were sweating. I loved how thorough they were being. I felt good about the amount of time they were taking with us. Nothing felt rushed.

But then we heard the words, “Not neuropathy. Motor neuron disease…like ALS.”

They were going to change up our testing schedule for the next few days; they wanted to rule out anything in the C-spine. I clung to that, asking, “So you think that’s the first likely option? And then something else?”

The doctor looked at me with a kind-pitying that I hated.

“We need to rule it out. But we wanted you to be prepared for the other option.”

She put her hand on my shoulder.

“I know this wasn’t on your card.”

“No, it wasn’t on my bingo card,” I said.

Gentle squeeze. “I’m sorry,” she said.

I tried to tell myself that they were just preparing us for the worst but they didn’t know it was for sure the worst. We’d keep our hopes up. I would get my dad through the rest of these tests, especially the one he was most afraid of (the EMG), and we’d find out it was something that could be fixed. A compression in the spine. Something surgical.

But the pit in my stomach was haunting. I told it to be quiet. We had work to do. I couldn’t break now.

My dad and I spent the next two days getting tests done. The first night, after the EMG, we celebrated with a nice dinner that included a beer for him and a glass of wine for me. He’d made it through his scariest procedure.

We laughed as we recalled what he’d said to the nurse when he walked up for it.

“So this is where I go for my electrocution?”

She looked him up and down, glanced at me with my smirk on my face, and said, “Oh, so you’re one of those patients.” The perfect response for someone like my dad.

We went home after the second day of testing. That was Tuesday night. Some of his test results had started coming in, and I made the enormous mistake of trying to read them (and Google what it meant). I even mistakenly went so far as to plug some of it into Chatgpt to tell me what it meant in plain language.

I regret that.

I went home, drank a full bottle of wine, and cried.

The next day, I tried to throw myself into work. It was Wednesday. Thursday we’d be going back to meet with the doctors to have them tell us their diagnosis and the game plan. I worked as much as I could while feeling dead inside. While feeling like it was all useless because I knew what was coming the next day.

Thursday morning we hit the road at 6:30 a.m.

I drove too fast, anxious to hear the results. To have them tell me that what I’d read was wrong. I drank too much coffee, had to pee constantly, was shaking. I tried to hide it all from my dad so that I could be his supporter. I’m not sure how well I did, but we spent a lot of time talking about many different things. That’s the nice thing about my dad — he’s really easy to talk to.

Every once in a while, we’d both go silent and stare off into the distance. Both trying not to let the nerves take over.

My palms were sweating. The doctors were late to the appointment.

When they came in, we joked with them a little, trying to break whatever tension we thought there might be. Telling them that the EMG wasn’t quite as terrible this time around.

But eventually, the other shoe dropped, and they started talking test results. I knew when she got into it that she was putting on her “business” face for a reason.

“Our diagnosis is ALS.”

Suspecting it. Preparing for it. Trying to interpret the results for myself. None of that actually prepared me for hearing those words come out of her mouth.

They asked us if we’d done any reading about the disease.

“No,” my dad said.

“Yes,” I said.

They stared at me. I started asking questions. I had my notebook in my hands from when they’d started going through test results.

THIS was something I could do. This was something I could control. I could take notes. I could take down information. I could ask questions. I could get next steps. I could find out what we do.

You tell me that my dad has an incurable, fatal disease? I’m a planner. I’m a fixer. I’m a doer. This was not in the plan. My dad is 68 years old. He just retired a year ago. He’s supposed to enjoy his retirement by going fishing and hunting, by taking camping trips. By taking the dog for a walk each day. By going out to look for wildlife. By going to the gun range he recently got a membership to.

My dad is not supposed to hear doctors tell him the average life expectancy after diagnosis is 3-5 years.

My dad is not supposed to have worked his entire life in a concrete warehouse to provide for his family so that he can get an incurable disease that takes away his ability to move. To go from walking 15,000 steps a day to not walking at all.

My dad is supposed to be here until he is much, much older. I am supposed to have many more years with him, many more adventures. This wasn’t supposed to happen. This was not part of the plan.