Rescue: Stories about taking care of others

This week, we're presenting stories about times when science comes to the rescue — or not, as the case may be.

Part 1: 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.

Part 2: Math teacher Giselle George-Gilkes is on a trip with her students when she receives terrible news from home.

Check out video from our show with Math for America>>

Giselle George-Gilkes is originally from the Nature Island of the Caribbean, Dominica. She’s been the 8th grade Math teacher, at East Side Community High School, since 2005. She graduated from Brooklyn College with a BS in Mathematics and from NYU with an MA in Mathematics Education. She loves mathematics and tries her best to help each student who walks through my door, either fall in love with it or gain a deeper appreciation of it. She is currently in her third fellowship as a Math for America Master Teacher, where she gets to work with an amazing group of educators, from whom she has learned a lot as she's grown as an educator.

 

Episode Transcript

Part 1: Kate Sheridan

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. 

 Kate Sheridan tells her story at Caveat in New York City. Photo by Nicholas Santasier.

Kate Sheridan tells her story at Caveat in New York City. Photo by Nicholas Santasier.

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. 

 Photo by Nicholas Santasier.

Photo by Nicholas Santasier.

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.

 

Part 2: Giselle George-Gilkes

So 2015 was a bad year for me.  One day, I’m on a journey to have a baby boy and what seems like the next day, I’m having a miscarriage.  In the blink of an eye, life threw me a fucking curve ball. 

One good thing I do remember about this experience was my work wife, Ilyanna who lives in the Bronx drove from the Bronx to Brooklyn to bring me Brooklyn cupcakes.  One, this chick hates driving from the Bronx to Brooklyn.  Two, if you've never had Brooklyn cupcakes, let’s talk after this.  I have a lot of coupons.  We buy coupons all the time. 

Sometimes I feel like, as teachers, we can’t have bad days, we can’t have bad weeks, we can’t have bad lives.  We must always be ready to step upon that stage of a classroom.  And I’m also weird.  I don't show my emotions.  I keep to myself, sometimes a lot, so it was hard coming back to school after that experience with happy kids and pregnant colleagues.  But c’est la vie. 

Fast forward to October see in 2015, we are getting ready for advisory day trip.  We take the kids on a college trip.  My mom had fallen ill the night before so I kept my phone close by so that my younger brother and I could keep in touch. 

Like my mom, I was born and raised on the island of Dominica, not to be confused with the Dominican Republic.  My childhood was fun.  You're in the Caribbean.  Didn’t own a jacket.  Didn’t own any UGGs at that time.  Small island living: the beach, church, home, school, music.  Lots and lots of music. 

 Math for America Master Teacher Giselle George-Gilkes shares her story at our show in partnership with Math for America. Photo by Nicholas Santasier.

Math for America Master Teacher Giselle George-Gilkes shares her story at our show in partnership with Math for America. Photo by Nicholas Santasier.

I would wake up on a Saturday morning around 7:00 and my mother had already been to the market, gotten fresh fish, meat, fruits, whatever we needed for that week. 

I remember when I moved from the Caribbean to New York, I cried for almost two weeks straight.  I moved to New York in August 2001.  When the Twin Towers fell in September, I remember my mom being so worried because we couldn’t make calls and you couldn’t get in touch.  She didn’t understand the concept at that time that her daughter lived in Brooklyn and the towers had been in Manhattan.  She knew that shit went down in New York and her daughter was in New York, point blank, period. 

We stayed in touch all the time.  Phone cards, costly phone bills to AT&T, Skype, WhatsApp.  Name it, we did it.  I never let more than two years pass before I traveled home.  Eventually when she got her visa, she was able to come visit. 

At that time I'd already done so much traveling and so many things with my life which just meant to show the amount of sacrifice that my mom did for me and for my younger brother. 

So we’re back at school.  We came back with 100% of the kids.  We like to fuck with them and tell them we’re only supposed to come back with 94% of you all.  All right.  Don’t stand next to me when the train door is closing.  Let me see.

So we’re back and packing up and I got a phone call, but this time it’s my older brother calling.  He says, “G, you need to come home.  Yeah, you need to come home.  She's not going to make it this time.”

I remember grabbing my stuff, running down to my principal’s office, to Mark, best principal ever.  In the midst of my tears I’m like, “Okay.  I got to go home.  I don't know what’s going on.  I just know I can’t be at work tomorrow.” 

In the midst of my tears I’m telling him, “You need to get somebody to get Leticia,” who was my most recent student teacher, who my team knew and who I think would have been an amazing fit to just cover me.  “I don't know how long I’m going to be gone.”

I get home that night, get in touch with one work wife.  “I got to go home.  Tell the team.”

Another work wife is on the phone with my cousin buying one ticket.  Mark kept sending pictures of the credit card, “Get this other ticket.” 

Again, we’ll meet in the back to talk about how you get to Dominica.  It’s quite a journey but it’s amazing.  Let’s talk, cupcakes and Dominica. 

I call one of my best friends, “Hey, I think I’m going to need a dress.”  I don’t say what.  She knows exactly what I mean because she's a fashionista.  I hate shopping. 

I go into my Chase Bank and do I have enough cash on hand?  I don't know what I’m going to need.  The Chase QuickPay comes in. 

“Hold this.  I think you're going to need some extra cash.”  That’s the power of my team. 

I don’t get a direct flight.  The next night finds me in Antigua, another beautiful Caribbean island, if you have never been.  Did you just catch on I’m just promoting the Caribbean Islands as I go around? 

Luckily I have a childhood friend who lives there so I spend the night there.  I remember praying that night, “Lord, no matter what you do, don’t take her tonight.  Let me get home, please.  Let me just get home to Dominica.  I’m trying my best.  They called and I left.”

The next morning, I land in Dominica.  We head straight to the hospital from the airport.  The palm trees and the ocean just calm my soul and I guess got me ready for the journey ahead of me. 

I’m looking at my phone.  I get a picture from Ilyanna and Chris, only the school dean smiling up at me.  P.S. I've got that picture from since then because this dude hates taking pictures. 

I walk into the hospital.  I can’t even remember any details about it but I walk behind my younger brother and she's there.  She's alive but she's in a coma.  I breathe a sigh of relief and kind of quickly check myself.  Remember, her prognosis is not good. 

From that minute my younger brother and I make a pact.  We cannot lose it at the same time.  Only one person is allowed to lose it at a time. 

Then we start a grueling routing.  Morning ICU visiting hours, go home.  Lunch ICU visiting hours, go home.  Evening hours, go home. 

 Photo by Nicholas Santasier.

Photo by Nicholas Santasier.

The next day I get a picture from my team.  It’s our weekly grade team meeting.  Everybody is there.  I tried my best to stay in touch, to send lesson plans.  I have compulsive issues.  I tried my best to stay in touch to send lesson plans and just to hold things down even if I’m miles away but that was so taxing and so tiring that most times in between visiting hours we just went home and knocked the fuck out. 

Fast forward to Friday.  I've been home for about a week and we are at the ICU for evening visiting hours.  Everybody is there.  My dad, my brothers, aunts, uncles, cousins, long-time friends.  P.S. The ICU evening doctors were a lot nicer so we took advantage of that shit. 

My brother and I go in first.  We’re dressed.  Gowns, hat, mask, everything.  Unbeknownst to us, a surprise is waiting.  A few hours before we got there, my mom started coming out of her coma. 

We walk into the hospital room and she sees the two of us and she shouts out to my younger brother, “Raul, you're in America?” 

P.S. My brother had never visited America. 

And we were like, “No, he's not in America.” 

She turns to me.  “You don’t have school in America right now?” 

“Mama, you're sick so I came home.  Mark said it’s okay.  I came home to check up on you.” 

P.S. When my brother came to America for the first time last summer, as he walked through JFK that was the first thing he shouted and opened his arms.  Raul, you're in America! 

That night she spoke to everybody: cousins, aunts, uncles, even the little kids.  She kept on asking who else was out there and we remembered dressing the little kids in these huge gowns and taking them in to see her. 

Eventually, the ICU doctors pull a few of us aside and said, “So we need to know if we should resuscitate her or not?” 

Fuck the pact.  That time, both my brother and I lost it. 

One of my older cousins stepped up and said, “No, it wouldn’t be fair to her at this time.” 

The next day, Saturday, we’re at home in between afternoon and evening visiting hours and we get a call.  “You need to come to the hospital.  Her heart is slowing down.” 

Now, if you've never driven with me, sorry, there are a few people in the room who have driven with me, when they tell you come quickly, yeah, I come quickly.  But we don’t make it on time.  My mom died on October 17, 2015 at 6:05 p.m. 

I kiss her at that point.  I tell her thank you.  Thank you for having me at twenty-one.  Thank you for loving me.  Thank you for always fighting for me.  Thank you for being proud of me.  And I hope that I had been the daughter that you loved. 

Fuck.  Sorry, I cuss a lot. 

We buried her nine days later and I remember at that time calling Mark and being like, “I can’t come back right now.” 

Like, “Why?” 

I didn’t want to come back to America.  Don’t get me wrong.  I love East Side.  I love my job, East Side all day, but I had just lost my heart.  I'd just lost the reason why I moved to America, why I worked so hard so I could have given her everything that she gave to me and then some. 

He simply said, “Take all the time you need.” 

I came back a month later to East Side.  I remember that day.  I drove in dumb early so I could get there before everybody.  Again, my control freak issues.  Eventually everybody came in and there were hugs and tears and conversations and just connecting back with my team. 

I pulled it together before the kids came because I have a reputation.  Not going to mess that up.  Can’t see Giselle crying, sorry. 

That day I didn’t teach.  I just assisted Leticia and, by all reports, she had done frickin’ well.  She survived the death of my smartboard.  Yeah, the smartboard died while I was gone.  She had to teach with whiteboard and chart paper, but now she's our ninth grade Algebra 1 teacher so she's a keeper. 

At the end of the week, my work wife Ilyanna hands me an envelope.  There's money in the envelope and I’m like, “Yo, you all need to stop.”  Apparently they’d made a collection.  Funerals are so expensive and we had spent a lot of money so I wanted to give it back but I wasn’t allowed to.  Honestly, it did help a lot at that time. 

It’s hard.  I try to cope with my grief every day as best as I can.  But one thing I know is I would not have been able to make it through this with my biological family nor without my family at East Side Community High School.  At the end of the day, all I can say is they are my rock.  Thank you.