Kate Sheridan: Controlling the Uncontrollable

When science writer Kate Sheridan falls in love with a man who suffers from paralyzing headaches, her background in neuroscience helps her get to the bottom of it.  

Kate Sheridan is a science writer based in Boston, where she lives with a remarkably fluffy cat. Her writing—much of which has to do with the flu, gene therapies, and other health-related stuff—has appeared in Newsweek, STAT, and the Montreal Gazette. She graduated from McGill University with a bachelor’s degree in cognitive science in 2014.

This story originally aired on Oct. 19, 2018, in an episode titled “Rescue”.

Story Transcript

I met him when I was twenty and I was a student in Montreal.  He was kind and curious, well-traveled with an accent that’s impossible to place.  He had a great relationship with his family and a Canadian passport.  Just for tonight I’m going to call him Joe. 

Joe and I started dating around Valentine’s Day that year so, to mark the occasion, he suggested that we cook dinner together.  So we went to the store, we got some groceries, went back to his place and that’s when he admitted something.  He didn’t know how to cook.  But we made it work and I went home that night with this big bouquet of roses and a big goofy smile on my face too.  I was falling in love. 

But just as soon as that had started to happen, I noticed that something was off.  We were lying in bed one night and it hit him.  “Shit, shit, shit, shit, shit, shit,” he said.  “Turn off the lights.  Don’t move.  Don’t talk.”  And then he blanked out. 

He started smacking his lips when he tried to speak.  His words were slurred.  I asked him to hold his arms up.  I looked at his face.  He wasn’t having a stroke but I was still pretty freaked out.  Eventually, he came back and he told me not to worry.  He was fine.  These migraines had been happening for years. 

“Migraines?  Come on,” I told him, “these look like seizures to me.” 

Because, as you just heard, before I was a journalist, I was a neuroscience student.  And actually, around the time I met Joe, I was taking this class about human cognition and seizures.  And everything I had just seen in front of me could be explained by complex partial seizures. 

For about a year, he waved me off and then he started to drive.  I was taught that a car is a deadly weapon.  It is a bomb on wheels.  And when I get in the driver’s seat, I have to be ready to control it. 

One day, we were on the highway.  I don't actually remember where we’re going but I do remember Joe pulling over to the side of the road abruptly.  His head felt funny, he said.  He was having an episode. 

He recovered and got back on the road.  Eventually, we made it to a service station.  We went to the food court.  He probably ordered McDonalds and probably stole my fries.  He probably told me that it was fine.  He could always feel them coming.  He would never do anything to put my life in danger.  And I probably lied and told him I trusted him. 

Thankfully, that was the closest we ever came to that particular worst-case scenario and he did, at my insistence, go and see a neurologist.  And that neurologist confirmed my diagnosis, well, his diagnosis really.  Probable temporal lobe epilepsy. 

See, brains run on electricity.  Every thought, every feeling, every touch is encoded in the current and all this electricity is delicately balanced.  Epilepsy disrupts that balance. 

When that happens, a few different things can happen too.  Some people lose consciousness and control of their muscles for several minutes.  Some people just look like they're daydreaming for a second or two.  And some people have symptoms, like Joe’s. 

Medication can help right that imbalance that’s what we tried first.  We tried so many drugs.  Each time we were optimistic maybe this would be the drug that would fix the problem and maybe this would be the one. 

As we’re trying all these drugs, though, our relationship is growing too.  We started to give each other pet names.  I was Princess or Beautiful, names that I would not have accepted from anyone else.  He was Darling. 

He did eventually learn how to cook.  We moved in together.  We survived the ensuing trips to IKEA.  And we began to talk about marriage and kids in this surprisingly concrete way for two people in their very early twenties. 

Joe knew that he wanted our kids to have my brain, obviously.  He knew I would say no to any marriage proposal before my twenty-sixth birthday.  Eventually, I started listing him, after we had lived together for long enough, as my common-law spouse on my tax returns and on my application to immigrate to Canada permanently. 

But while we’re building this life together, Joe’s relationship with his brain is changing too.  He began to live in fear of it, which is understandable, really.  He no longer had control over his own body.  A headache was no longer just a headache.  It was a harbinger.  And a bad night’s sleep could destroy a day before it even began. 

“I can’t focus today,” he'd tell me.  “I’m just waiting for the next one to hit.” 

Sometimes the next one came later that day but sometimes it would hide away for a month lulling us both into a false sense of complacency. 

In order to try and bring some control to this incredibly uncontrollable illness, we started tracking everything in a spreadsheet.  We became obsessed.  Everything he felt, everything he did went into the spreadsheet.  We were trying to predict, really, what made one day a good day and one day a bad day. 

But, really, there was not a whole lot that I could do.  I could give him some standard-issue emotional support, basic girlfriend stuff, and there were these favors, too, that he would ask for.  Could I remember this medical appointment, he'd ask.  Did he have a seizure last Friday?  Did I remember?  Make a note he had a coffee this morning. 

These favors came in much larger sizes too.  One time I drove him from our home in Quebec to New Hampshire for a consult about this experimental implant, like a pacemaker for his neurons.  If he had a seizure in the middle of the night, we both got up at 3:00 a.m.  He got up because he had no choice and I got up because he woke me up and asked me to record his seizure on my phone and ask him questions to test his memory. 

I heard myself on one of these recordings once.  I sounded pissed because I was beginning to realize that his diagnosis was reshaping my life too.  On his good days, I could focus on my developing career and on the best parts of our relationship.  But on his bad days, both of those things were impossible.  Instead, it would be a full day of seizure-related favors and discussions about treatments and triggers.

And some of these discussions were about things that would seem bizarre in any other household.  We were talking about things like brain surgery.  Because it had become clear at this point that medications weren’t working.  Brain surgery was the next step. 

The procedure that we were talking about really wasn’t even that big a deal.  The neurosurgeons were just going to stick some electrodes under his skull and in his brain and see if they could find where the seizures were starting.  If they could find that place, the center where all of this mayhem was being generated, maybe they could cut it out.  But that wasn’t what they were doing this time.  They just wanted to get a better look at what was going on. 

So I felt pretty blasé about the whole thing when it happened.  His family came into town and a group chat was set up for the occasion.  I went to work that day and I got a message around 3:00 p.m.  He was out of surgery.  He was vomiting.  He was in pain and the next message, something about a code and that he wasn’t responding anymore when the seizures were happening. 

It was clear to me from those that something was wrong.  His family was furious at him for doing this and I was terrified because I hadn’t exactly encouraged him to do this but I hadn’t discouraged either. 

So I left work, of course.  I got in a cab and we started to go to the hospital.  That hospital was a place that I had admired.  It’s well-known in the neurological community or whatever and I'd actually taken that course on human cognition and seizures at the hospital.  But as we’re going up the hill, this place that I had once admired so much is becoming this place that I first felt that all-encompassing crazy fear that something terrible is happening to someone I love and I am not there. 

And as we’re going up the hill, all these what-ifs start going through my head.  What if his brain is swelling out of control?  What if the surgeons nicked something they shouldn’t have?  What if he's never going to be the same? 

We had talked about what I should do if the worst happened, if he became a vegetable, but there was no way I was ready for that.  This was supposed to be minor.  And that’s when I became a total wreck.  I started sobbing in this cab harder than I had cried, I think to this point in my life ever. 

Eventually, we do get to the entrance.  We get to the hospital.  I pay the poor cab driver.  I go inside.  I get to the elevator.  I go to the floor and I try and pull myself together before I see him.  I do and he looks like hell.

He's got this cocoon of gauze, a beehive on his head to protect his skull but the nurses reassure us that, no, really, he is fine.  It turns out anesthesia does crazy shit.  People do too, actually, when they're grateful.  I spent hours with him in the hospital and brought him sweaters and blankets when he was cold. 

I was really happy when he came home after nearly two weeks but I'll never forget something that someone told me while I was there, while he was there.  “Brave girl,” they had said, “it’s tough to love someone with epilepsy.” 

It took me a really long time to admit how tough it was especially, perhaps, because I felt responsible.  I thought I had started this.  These had been migraines, irritating but tolerable before he met me. 

Maybe, I thought, I could fix it.  Maybe, I thought, he needed me to.  Over time, though, that started to build up into resentment.  I resented all of these favors.  I resented being asked to leave work to go to all of his medical appointments.  I resented my brain becoming his backup hard drive.  And most of all, I resented this feeling that I couldn’t possibly leave because, if I did, for so many reasons, he might crumble. 

Eventually, that resentment stopped being this dirty, awful secret that I whispered to close friends in dark bars after one drink too many.  Eventually, he noticed.  And eventually I admitted it.  I admitted I couldn’t do this anymore. 

I left him.  I left our home and, eventually, I left the country.  I felt free and relieved but so ashamed and selfish.  Hadn’t I abandoned him?  Who does that? 

But eventually I realized that maybe the person that I had fallen in love with wasn’t the same person who was standing in front of me at the end of our relationship.  Maybe I had changed him when I gave him this diagnosis. 

It’s been a really long time since I spoke with him last.  I don't know if he has his seizures under control.  To be honest, I assume he doesn’t.  But as I was trying to figure out what to say tonight, I went back through all of our old messages, all of the “good nights,” and “good mornings,” all the “I love yous.”  Even though I knew how the conversation would end, this one message brought me right back to how it felt on one of those good days right in the middle. 

“What are the odds,” I asked him?  “What are the odds that you, a person with undiagnosed seizures and me, a person studying cognitive science and seizures meet and fall in love?  It was meant to be, Darling.” 

Maybe I was right.  Maybe it was meant to be.  Just it wasn’t meant to be forever.  Thank you.