When you last left us, almost two weeks ago, North was sitting in the shallow water at the edge of Cayuga Lake, in Ithaca, New York, and they were unable to stand, even with support. They’d lost control of their thigh muscles, though they had some strength in their hips, glutes, calves, and feet. Though a combination of pushing with their lower legs and us guiding them they could scoot on their bottom and we got them to the picnic table just feet from the water where we’d eaten lunch, though the pebbly incline was a challenge.
North had been complaining of occasional muscle weakness prior to this incident, but nothing on this scale. We hoped it would pass, like the other times, which never lasted more than a half hour, but in the meantime, we needed to get them back to the house. The car was parked in a lot that was in sight, but with North unable to walk, it might as well have been on the moon. There was a service road that came close to the table so Beth went to ask the staff at the park entrance if she could drive on it, but they weren’t authorized to let her (they were young and seemed afraid to break rules).
Beth returned to the table just as a park police officer drove by and after she explained the situation, he (rather reluctantly) said she could drive on the road. Here Beth got annoyed because he wasn’t a teenager with a summer job and he didn’t have to make it hard. Anyway, we got North from the table to the car—I honestly don’t remember how—and drove back to the house.
After some time passed and North’s condition did not improve, we had to decide whether or not to go the ER. You may find it strange that we didn’t for another two days, but we’ve been through a lot of mysterious maladies with North and Beth and I both thought it would be better to get home and take them to Children’s where they’ve been going since they were eight years old. The doctors in neurology and at the pain clinic have the big picture—the month and a half of not speaking (third grade), the year of broken bones (fifth grade), the complex migraine that left their hands and feet paralyzed (also fifth grade), the fracture that left them on crutches for nine months (seventh to eighth grade). We wouldn’t have to try to explain the whole saga to someone new. Also, having had two overnight ER visits with North over the past few years, no one was eager to repeat that experience.
So that’s why we decided to stay at the house. We switched beds so Beth could sleep with North in our bed and I slept in North’s bed. The next day, North still couldn’t move their legs. Beth went to a medical supply store (two actually) while North attended the first and second sessions of an online summer school class they’re taking. Beth returned with a walker, the kind with a seat, that we could use to transport North to restrooms on our drive home. The car was too packed with the contents of Noah’s dorm room to fit a wheelchair.
We left our AinBnB in the early afternoon. “Goodbye, Ithaca. Hope to see you again soon,” Beth said, as we pulled out of the driveway.
“Goodbye, Ithaca,” Noah said, sounding wistful.
A quick diversion on that topic: since we left Ithaca, Maryland has been put on the list of states from which New York will not accept visitors unless they quarantine for two weeks on arrival. Ithaca College’s current policy is that students from these states cannot return to campus until their home states come off the list, which now consists of thirty-one states. I wonder if the list continues to grow if Ithaca will go entirely online for the fall, but as of right now the plan is still a rolling schedule of arrivals from early September to early October, and hybrid classes you can attend in person or remotely. (And while we’re talking about school, our K-12 school district is completely online at least through late January, we recently learned.)
But back to this story… We got home Monday evening. While we were driving, we’d gotten a call back from the doctor who manages North’s case at the pain clinic, or rather a call from someone else saying she was in surgery and couldn’t call back until the next day.
When she did call, late Tuesday morning, she said to go to the ER at Children’s rather than get an appointment at the pain clinic. Beth and North went and to our surprise, because it’s never happened before when we go to the ER, North was admitted. They got a COVID test (negative) and a series of exams and around eight p.m., they got a room. It was a really nice room, spacious because it’s usually a double, and with a view of the Washington monument and the Capitol. Beth came home to get some things for North and then she returned and spent the night in a fold-out chair in the room.
All the next day, North saw more medical personnel and had more exams. I got to the hospital just in time for the MRI. Only one parent per patient is allowed in the hospital at a time and I’d come to relieve Beth. To get there I had to take public transportation (a bus, a train, and a shuttle), which I hadn’t done since March (well, until the previous day when I’d taken a bus to go get some groceries from the Co-op in Beth’s absence).
The MRI took a long time because it was actually two MRIs, one with contrast and one without and they had to change North’s IV in between because it wasn’t working. It was freezing cold and very loud in the room, but North didn’t complain and it was much louder (and hot) in the machine, so I won’t either.
After the MRI, North felt a migraine coming on, probably from the noise, and because it took an hour and a half and two requests to get a nurse to come with painkiller, it developed into a full-blown one, which I haven’t seen in years. (They’ve gotten very good at detecting them and heading them off.)
After they’d recovered, we had dinner in the room and played Sleeping Queens until Beth came to take me home and then return to the hospital. She said as I’m the lighter sleeper I’d never get to sleep with all the lights and noise of a hospital, which was generous of her.
Wednesday was also the thirty-third anniversary of our first date, which we usually celebrate, but we didn’t really this year. As she was leaving the house either the first or second time she went to the hospital that day, Beth said it was not the anniversary either of us would have envisioned, but then she paused and noted we were talking about kids pretty early on in the relationship (even though we took a long time to have them) so maybe it was appropriate.
We found out the next day the MRI hadn’t turned up any physical reason for North’s immobility. This didn’t surprise us or the neurological team. They concluded it was a similar to the misfiring that causes North’s chronic pain, but this time in response to stress, rather than an overreaction to a physical injury. Possible stressors include: the pandemic, the physical and psychological toll of being in pain since February, the car that crashed into our fence in late May (North was just a few feet away), and Matthew’s death.
That all seemed to make sense on the surface, but as North pointed out, when it struck, they were swimming, and actually feeling pretty relaxed, as any kind of water is their happy place. I find it interesting that it’s their legs that are affected because that’s what happened to Matthew and North was the one who found him half-paralyzed. The doctors (who are not literature Ph.Ds) find the symbolism less compelling. More to the point, they think that physical therapy can get their brain and their legs communicating again. If that happens, all the clues and theories don’t really matter.
Beth and were texting and talking about all this on the phone all day. When I returned to the hospital in the afternoon, not much was going on by that point, except people coming to take North’s vital signs and a social worker who dropped by. We played Clue and Sleeping Queens again and were just about to try ordering dinner again (the line had been busy earlier) when a nurse came by with discharge papers. We were surprised as we didn’t think that was even on the table until the next day, and last we heard, the neurological team was debating discharge to home or to a rehabilitation hospital. Also, we had a prescription for physical therapy (starting the next day) but not for a medication that had been discussed. And we didn’t have the signature we needed for a handicap parking permit. But we were all eager to have North home and Beth had already acquired a wheelchair, a grab bar for the shower, and a shower stool. So we decided to call with our outstanding questions the next day and just get out of Dodge. (We did order and eat our dinner while we were waiting for some more paperwork.)
Weighing on our minds all through this was the fact that we had a house in Rehoboth one block from the beach rented for a week, starting Saturday. We decided Beth would discuss it with the physical therapist the next day and I joked we were a flight risk. “We are so a flight risk,” Beth said. That evening, with North in our custody, it was starting to seem possible we would actually go.
To be continued…