S4: Former Life

Kelsey and Louie’s life is blessedly boring in the best kind of way. They have good jobs. They live in the suburbs. They have a kid. 

When Kelsey gets pregnant again, everything changes. Not just because they’re about to go from one kid to two, but because Kelsey isn’t feeling well. She’s diagnosed with Guillain-Barre syndrome. 

Some changes you anticipate. They are eagerly awaited — like a pregnancy. And some changes just jump out at you and turn everything upside down. 

Originally published 9/24/2019

–

Fordham University’s Master of Social Work program is ranked among the nation’s top 8% of graduate social work programs by the U.S. News & World Report. With three New York campuses, plus hybrid and fully online options, Fordham’s flexible program works with your schedule to help you earn a degree on your timeline. Our evening and weekend part-time study plan is ideal for working adults, with most students maintaining employment throughout their education. 

Learn more about Fordham University’s Master of Social Work program at: fordham.edu/TTFA.

Transcripts may not appear in their final version and are subject to change.

---

I’m Nora McInerny, and this is Terrible. Thanks for asking.

I’ve always said life is about change. I’m basically just an inspirational greeting card in human form. But life is about change, and some of it you’re ready for.

You’re anticipating, you lean into it, and some of it just happens to you. And all changes need a jumping off point, a place from where things change. And for Kelsey and Louie, that jumping off point was their third pregnancy.

So, let’s set the stage. Louie’s job is we don’t know what his job is, but it’s big, he couldn’t give us a lot of details, but it’s clearly intense.

I had just started a major career at this firm, and I was doing business.

Right, just business, quote unquote business. What do you do? Quote unquote business.

You could say I’m a business person. That’s really all we need to know, Louie, and business. Kelsey is a nurse.

She’s done all kinds of nursing, and she’s good at it. She’s just always been good at it.

I think my patients would have described me as somebody who was on the ball. You know, somebody who was good giving medications on time and taking care of tasks and taking care of all the orders and doing proper assessments.

How do you think your former colleagues would have described you?

Oh, I think somebody, a team player, somebody who was always willing to pitch in and help out and just do whatever we needed to do in the patient’s best interest. Somebody who was always happy, or at least pretending to be happy to be there.

Kelsey is self-described as Type A. Type A, you know, she likes things done her way, which is coincidentally the right way.

I’ve said that, like, my idea of a fun Saturday was vacuuming my house in an unusual order. That was how I changed it up and really thought things were fun. So like, so Type A and so rigid.

And now I realize, God, how not, I’m not fun now, but I was really less fun then.

Life has these really high highs. It has really low lows and in the middle, so much monotony that you could be lulled to sleep while also being alive.

Truly think about it, go to work, come home, watch Netflix, listen to podcasts, which is what you do because you’re a better person than people who just watch TV. Maybe to spice it up, you vacuum your house in a different order.

That sounds judgmental, but no, no, no, it is not. That’s the best part of life is monotony because it means that things are okay. And okay is good.

In Kelsey and Louie’s life, oh, it was blessedly boring. It’s a compliment. By the way, I mean, they had jobs, they moved to the suburbs.

They had a first pregnancy, it was a miscarriage, then a second pregnancy, a kid named Burke, who they describe as strong-willed, which all parents know is just code for, nope, just strong-willed, doesn’t mean anything else.

I don’t know, life was going towards whatever it is we’re going towards.

And then it came. When Burke was one, Kelsey and Louie got pregnant for the third time.

Which was planned. We wanted it that way. We wanted to get this done.

But it was really fast.

It happened really fast.

This is when everything starts to change.

Their marriage, their family, and Kelsey. And you might be thinking, yep, that’s what the creation of a new life tends to do, changes stuff. But this change was different.

Because this change is not just a kid.

It was a Sunday afternoon and I had a fever. And I was just tired and I hadn’t felt that way up until that point in the pregnancy. And I just figured, okay, well, this will pass.

Spent the day in bed. And then Monday, Tuesday, Wednesday, I ended up calling in to work, which was so unlike me because I had perfect attendance the year before because that’s what you do when you have control.

So after a week and a half of feeling like this, Kelsey goes to her OB.

And he said, well, let’s try some Amoxicillin. Maybe it’s just this thing you can’t kick. My sinuses were a little tender at that point.

But I had started getting this rash on my thighs and my stomach and my cheeks had, in the medical profession, what they call a slapped appearance.

And it’s just like red streaks.

Like it looks like somebody had a slapped appearance.

A slapped appearance.

As the husband, I’m sitting in my chair not liking that term at all.

Yeah. OK, so a slapped appearance. I was like, what could that possibly mean?

Wow, like you got slapped. OK, I figured it out.

Yep.

I figured it out. I don’t want to credit the Grey’s Anatomy I’ve been watching lately, but should I have been a doctor? I mean, OK, so the symptoms are rash, itching, looking like you’ve been slapped.

The OB orders some tests. They’re going to rule stuff out. Again, this is all standard Grey’s Anatomy stuff.

And after all the tests, they come to a conclusion, a conclusion that is going to be shocking.

Kelsey has mono, the kissing disease, the disease that in college and high school you hope will arrive at finals, but instead comes for you at prom or college prom, which I think is just spring break. That’s what’s going on with Kelsey. Mono.

Which, aside from the fact that who’s she kissing? It’s not a big deal. She’s had it before.

Actually, I learned from this interview, there’s a version you can get twice. And if anyone wants to kiss me, I could really use just a rest. I could use some ice cream, some naps, law and order reruns.

So Kelsey goes home, ready for some mono. But it doesn’t really feel like mono. It feels weirder.

I had numbness and tingling in my hands and feet.

That when it was ongoing, no matter how much I shook my limbs out, it wouldn’t go away. And that felt very strange to me. So I called the doctor right away, and he said, come in, we’ll get it figured out.

Look, Kelsey is a person who doesn’t like to miss work.

She doesn’t like to ask for help. She’s in charge of her own body and her own destiny. But she’s also a nurse who’s having trouble while walking on her own.

She calls her OB to describe her symptoms, and they tell her, you need to rush to the ER. But the numbness, that tingling, it’s so severe, she can’t rush anywhere. So she sends Louie a text.

And that day, Louie was having an intense workday at his quote unquote business job. Where months and months of work culminate in a big meeting with big important people. The kind of meeting where it’s really important that everything go just right.

I don’t want to say lives were on the line, but I mean, big meetings kind of feels like it. I’m saying this as a podcaster whose job is literally saving lives. But right in the middle of this meeting, Louie’s phone goes off.

I looked down at the text.

I have to go to the ER right now, right now.

Right now, we need to take a break and handle some of our own, quote unquote, business. Some careers offer stability. Others offer meaning.

And we’re back.

Louie just got a text from his pregnant wife that she needs to go to the ER. He’s in the middle of a big work presentation where he’s a central figure.

Ah, gentlemen, I have to go. I have a family emergency. I just got a text from my wife, and they were like, oh, uh, well go.

So I had to get out of security and then raced home, and she couldn’t walk. I mean, she couldn’t get out of bed.

At the hospital, they learn that it’s not mono. A new doctor comes in and tells them something else entirely.

She goes, hi, Kelsey. So, yep, we got the results back, da da da da. You have CMV, so blah, blah, blah.

And she’s kind of like moving past it. And it’s like, wait a minute, wait a minute.

Kelsey has something called cytomegalovirus, CMV. Cytomegalovirus sounds like an evil villain in a cartoon, and it kind of is. It’s also really common.

I learned by using my medical degree from Google, that a lot of people have CMV, and don’t even know they have it. Because it’s not that big of a deal, unless you have a compromised immune system, or unless you’re pregnant.

And if you are pregnant, the risks to the fetus sound really scary.

I felt like I had missed the boat on being educated about as a woman, and as a nurse, and a woman who had now been pregnant a third time. How did I not know about this thing, and how terrifying it can be?

I mean, here’s how terrifying it can be. The risks to your unborn baby are a lot.

Hearing loss, vision loss, intellectual disability, microcephaly, which is the small head thing that helped make Zika so terrifying, lack of coordination, weakness, problems using muscles, and seizures.

So the earlier in your pregnancy, the less likely the baby is to contract it from you, but the more devastating the effects. So fetal demise would be a common thing if the baby were to contract CMV from a mother in their first trimester.

Okay, let’s pause real quick. Fetal demise, also known as losing your baby, they’re still early in this pregnancy. This is huge.

The farther along you get in your pregnancy, the more likely they are to contract it, but the less devastating the effects.

I was in my second trimester.

They head home on a Friday, and Kelsey crawls into bed to rest. But home is not good.

I had acquired this nasty cough that kept me up. At night, I was coughing so hard, I was throwing up or gagging, and the numbness and tingling still hadn’t gone away in my hands and feet.

And then I washed my hands, and I couldn’t feel the temperature of the water in my hands. I couldn’t feel the water in my hands at all. And it was so strange because I saw it hitting my hands.

I knew that I should be feeling it, but I couldn’t. And then if I ran the stream of water further up my arm, I could sense it.

Kelsey’s plan is to just take the drugs and wait. That’s really all there is to do.

It was obvious that I was getting progressively weaker, but I didn’t want to be a hypochondriac. And I didn’t want to call the doctor and bother them if it was just this little thing and I was overreacting. So, Sunday, I was scared to be left alone.

Louie and Burke had to go to a party. And for the first time, I was scared to be left alone, which is not like me at all. When I’m sick, I want to be left the heck alone.

I will lock that door, nobody bother me, nobody come in. And for the first time, I really was scared to be left alone.

Monday morning comes, and as soon as possible, Kelsey calls her OB. She’s sure that something is wrong. And instead of talking her down, the team tells Kelsey that she needs to come in immediately.

But first, she has to do what all pregnant people have to do a billion times a day.

Every three minutes. It’s a lot of work when you can’t walk. So I wanted to go to the bathroom, and I sat on the toilet.

And Louie, because I was scared to be alone at this point, Louie was right there, and I said, You need to help me up. I couldn’t stand up.

And then I tried to brush my teeth, because nobody wants to show up at the hospital with, you know, stank breath. And so I tried to brush my teeth, and my hands were so weak, I couldn’t hold the toothbrush.

And it kept echoing in the sink when I dropped it. And Louie put his arms, you know, under my armpits, like you do for a toddler. And like we had for Burke, and helped me to his truck.

My legs buckled, I don’t know, three or four times.

I had to carry you at some point.

No, I wouldn’t let you carry me.

Oh, you wouldn’t let me carry you?

Look, let Louie have his version where he carries you.

You’re going to say, in my version, I have a cape, and you’re being carried.

Pregnancy makes it easy for you to see just how amazing and just how fragile the human body is. It’s the ultimate Rube Goldberg machine to even get pregnant.

The egg has to be there at just the right time for the right sperm to find it, then it has to implant. And also, so many pregnancies are lost, and so many women have terrible complications. And we have a dismal maternal mortality rate here in the US.

So what the doctors tell Kelsey is that another Rube Goldberg machine has been kicked into motion inside of her.

Kelsey’s CMV, which is only a big deal if you’re pregnant, which she is, can trigger another very frightening disease, which it absolutely has.

16:47
Terrifying Diagnosis

The doctor tells her that she has Guillain-Barre, Guillain-Barre, she’s got GB. So anyways, I mean, I tried to, I made you pronounce it so I wouldn’t have to.

Yeah, right. It looks like Julien Barr.

That’s how I was saying it.

Yeah, but it’s Guillain-Barre. And I always thought it-

It sounds more high end.

I thought of Julien Anderson from the X-Files. Every time I said it, I don’t know why it’s a complex.

It feels very pretentious to say it.

I’m Guillain-Barre.

Exactly. It’s cool though that we got the hip French one.

Yeah.

That’s cool.

It sounds silly, but as a nurse, Kelsey knows what this is, and she knows just how scary this is.

So Louie didn’t really have a full sense of understanding of what this meant at that point in time. So I just looked at him and I said, just take care of the baby.

It’s scary because GBS, as we’re going to call it, so you don’t have to keep butchering it, GBS is a rare thing where your body’s immune system attacks your nerves, and your nerves are important. Without nerve function, you can become paralyzed.

The muscles that control your breathing can stop. Your heart can stop. There’s intense physical pain.

There’s no cure, and people who do recover from it they often have side effects like weakness and fatigue forever.

And Kelsey, who has been totally in control of everything, who vacuums the rooms out of order just to spice it up, who committed her life to taking care of other people when they are vulnerable and sick, she’s now the sick one, the really sick one.

She’s the patient in that doctor’s office. She’s a patient later when she’s laying on a table for a spinal tap to confirm the diagnosis, thinking about her unborn baby and what could happen to both of them or each of them.

I came back up with all these possibilities in my head. And one of them, which was a very, it sounds so dramatic to say it, but was a very real possibility.

I was terrified that I, you know, would go into cardiac arrest or something would happen, where I, you know, would slip in to a coma or something, and I’d wake up and my baby would be gone.

And I wouldn’t know what happened to them or what had happened to me or how much time had passed.

Louie is just a regular business guy with a pregnant wife who is sick. How sick, he’s not sure, but when he sees Kelsey worry, he starts to worry. When Kelsey’s moved to a hospital room, there are people asking him about healthcare directives.

Does she have one? Do they need one? Louie pulls the doctor aside to try to gather as much information as possible, to try to understand what was happening to his wife and possibly to their baby.

And the doctor is really honest.

I think you guys are really honest people. And so I think honesty is just going to be the best thing here. And he said, and I quote, I’m fucking scared.

And you should be too. And I was just like, OK. And I said, so let’s play this out.

And he said, well, if she goes into cardiac arrest and we have to put her into a medically induced coma and put her on all these machines, you know, they have had victims of car crashes who are very pregnant and very brain dead, and they keep them

alive and keep the baby alive and give birth and then go from there. And he’s like, that’s the worst case scenario next to everything falling apart. And it’s just like, oh shit, like, I don’t know, how do you, you know, it’s that oh shit.

It’s that oh shit. Inside this hospital room, Kelsey and Louie are now on the same page, but that page has been ripped right out of the book. The life that was so perfectly in order, so blessedly boring, doesn’t exist.

The worst case scenario is that Kelsey and the baby both die. A slightly less worst case scenario is that Kelsey is brain dead, but they keep her body alive in order to deliver the baby.

21:47
Physical Decline

And as things progress and her immune system continues to destroy her nerves, which continues to destroy her mobility, Kelsey is stuck in a hospital bed, struggling with the things she’s always taken for granted.

I had to pinch my lips.

She had to do the mustache.

To force the sounds out. I can’t move my hand off of the bed. I can get my elbow off, but I can maybe do this to try to get it out.

I remember one moment, it was four days after I was hospitalized, and it was when I realized I could no longer turn in bed. And that was terrifying. I couldn’t reach my arm out to grab the side rail to help pull my weight over.

And it was at that moment that I realized how helpless I was.

And that helplessness is not just physical, because there’s nothing doctors can do. There’s nothing for Kelsey to do, but to keep getting sicker until she doesn’t. And there’s nothing for Louie to do except everything else.

Because even though their world is on pause, suspended between possibilities, there’s a little boy at daycare who still needs to be picked up.

I go home and my basically as a former educator and childhood development specialist, I know that routine is number one. So this kid’s mom’s been yanked out of his world.

And, you know, so I can’t be freaking out at the table and collapsing into a million pieces. I mean, that’s what you have to do. And it was like, OK, every day we’re going to get up, we’re going to have our breakfast.

We’re going to do the exact same thing every single day and try not to deviate from that. That was my immediate reaction in the immediate aftermath.

And once you get him to daycare?

So once I get him to daycare, I had the flexibility of being an outside, you know, I manage clients from the outside. So I don’t have to be in a cube. I don’t punch a clock.

You know, I had that benefit, but I had to go to the hospital and get updates and also work and then also go into the office because they wanted to see me just showing up. I, yeah. And so…

You have to show up even though, like, your wife might die.

My wife might die.

There is a distinct possibility I’m going to get a phone call and she’s going to die and I’m going to be here in this eight person office.

That’s the reality of having a sick partner in America, that you’re still going to need to go to work or be checking email from a hospital room. They’ll be reading bedtime stories to a little boy whose mother can’t blink her eyes anymore.

For weeks, it gets worse and worse. Louie keeps Burke’s schedule as precise as possible. Louie does the morning routine, takes Burke to daycare, goes to the office or to Kelsey’s hospital room to work and keep her company.

And Kelsey, who spent her career taking care of other people, can’t take care of herself but really can’t do anything.

By the worst point of it, she was completely mouth open, like couldn’t move her eyes. I mean, it was so fucked up. And then she’s got this titanic watermelon in front of her.

Like, I mean.

Yeah, the rest of me was disappearing. I lost 20 pounds over my pregnancy.

And her muscles are atrophied. Yeah.

Yeah.

Her skin hung from her bones. Like they had to carry her out of the bed in the cattle cart. Oh, my God.

It was so insane.

Like.

What happens when a person who is used to caring for other people can’t care for herself? Other people step in. Doctors, nurses, nursing assistants and nurse practitioners, specialists.

People turn Kelsey’s body when she can’t. They give her sips of water from the cup she can no longer lift for herself. They’re just there.

Laying in that hospital bed, the only thing I had were these little interactions with people and the healthcare workers that allowed themselves to talk to me about their own lives and fears and some of them would cry with me or they’d leave my room

The size of Kelsey’s world just keeps contracting to the size of her room, to the size of her bed, to the medical team and Louie.

And being somebody who always wanted control of the situation and insisting that Louie stay with Burke and that I didn’t want anybody really in my room, I didn’t want family, I didn’t want anybody there.

I just needed to be in my body and to get through this and conserve energy so I could get back home. That was my goal. Communicating took a lot of work.

When she has the strength, Burke visits too.

Seeing him were the best moments and the worst moments because seeing him brought me great joy.

But seeing him leave was terrifying. Because I didn’t know what kind of condition I’d be in when I’d see him again, or if I would. So I was really bittersweet, so really emotionally and physically.

I could only handle his visits about once a week. That was all I could do. And looking back at that, it’s like, God, like, what a horrible mom to only want to see her child once a week.

But it was literally all my body could handle.

It sounds scary, terrifying, but Kelsey wasn’t scared. She wasn’t anything.

My brain couldn’t think.

I was literally so focused on surviving that I didn’t even have the ability to process what was actually happening, that it got to a point where my breathing was so challenging that I couldn’t feel my lungs, and literally every moment was spent

There’s something in GBS called the plateau.

It’s basically the worst that things get. For some people, the plateau isn’t that bad, considering all the possibilities. Maybe it stops with tingling in their hands and feet.

But not for Kelsey. For weeks and weeks, she waited for that plateau to hit. Is this the worst it can get?

Or not?

There’s no way of telling how bad it’s going to get until you get there.

In a lot of ways, she’s been waiting for this plateau since that first visit to the OB when she just wasn’t feeling well.

She’s been waiting since the mono-diagnosis, or even the CMV diagnosis, for it to get as bad as it can get so she can finally get better. While she’s laying there, trying to will herself to breathe, Kelsey thought about the movie Kill Bill.

In it, Uma Thurman plays a character called The Bride. And one point in the movie, no spoilers, but The Bride has been in a coma, and she crawls her way out of the hospital and into the back of a car.

And then looks at her feet and says, wiggle your big toe. Wiggle your big toe. And I spent so much of my hospitalization doing that, looking at my feet and channeling Uma Thurman.

29:47
Path to Recovery

And then all of a sudden, it happens. It just happens very quickly. I could now wiggle a toe, and I could breathe on my own again without a BIPAP machine to help me.

And I started to stand and then was able to take a few steps with a walker.

And then they transferred me to the rehab unit in the hospital, which felt like this cruel joke to try to learn how to balance being so pregnant and learning how to walk again when your body has wasted away and there’s no muscle tone left.

So it was 34 weeks when I started to walk again. And then at 36 weeks, I was discharged home.

Home. With about four weeks left before her due date, Kelsey’s going home. So she’s all better, right?

She skips right out of that hospital room, moonwalks to her car, then does a triple backflip into her front door, yeah?

Not at all. I’m using a walker for very limited steps. We’re using a gait belt around my waist, and Louie’s basically hoisting me up each stair.

I had a commode at my, right next to my bed that I would pivot to, and that took great effort. I mean, it was hard to survive even that way.

We had one rule. There was one rule.

There was one rule.

Yeah. And I basically said, you know, we, all right, man, I can do this. I can do this care provider thing.

There’s no shitting in the commode.

Oh, that reminds me, we’ll be right back after this break. Don’t shit in the commode. We’re back, just like Kelsey is back from the hospital, back in her home, back to her family.

The split-level house they bought in the suburbs is now treacherous. Louie helps her up the stairs. She struggles to shuffle to the bathroom.

She’s almost full-term, and her damaged nerves won’t even let her feel her stomach. That’s a problem because generally you feel contractions, and those contractions tell you how close you are to giving birth.

But there’s no telling if Kelsey’s body will ever tell her that she’s in labor. There’s no guarantee that she’d know in time to get herself to the hospital. So the doctors tell her, if you even think you might be in labor, call 911.

And there’s another question, which is, how will the birth process even work? When she was hospitalized, it was obvious that a C-section was going to be the only choice for a safe delivery. I mean, without nerves, how does pushing work?

But as she starts to recover, another option is being floated to her.

And I started talking to more of the OB staff. They started encouraging me to ask for a vaginal delivery, which I thought was insane. We weren’t sure there were some things that were super painful that you wouldn’t expect.

Like, if somebody touched my hip, I would literally scream out in pain, which is not my style at all. I’m usually very stoic with pain. So I was like, this can go one of two ways.

This can either be super painful, or I won’t be able to feel this at all. And we didn’t know.

Then at her regular checkup, they tell Kelsey that she’s three centimeters dilated. Tell her, come back in two days. When she comes back, it’s five centimeters.

It’s time. Louie drives Kelsey to the hospital. She’s given a microdose of an epidural to see how she’ll react.

And she crashes.

And my blood pressure dropped, and I couldn’t breathe. And I was 70 or 30 and pale.

She was ash white. All of a sudden, I couldn’t breathe. I saw that.

I couldn’t breathe. And yeah, I was, it was, that was about it. That was about all I could take.

In that moment, it was like, shit, I made it this far, and this is the moment where I go on the ventilator.

They give Kelsey some more drugs, and she immediately stabilizes.

She’s going to have a vaginal birth? Kelsey pushes, and it takes 30 minutes, which is very, that’s fast.

Louie thinks she flew out of my vagina. That’s not actually what happened. It hurt, and I pushed, and it was hard.

But she came out, and I expected to immediately be totally paralyzed again. I was terrified of what was going to happen to my body, and just seeing her out whole, I just had this feeling that there’s no way that anything can be wrong with this baby.

Like, she is so perfect, that she just, she looked perfect. I don’t know how she lived in such a toxic body for so long, and came out so perfect.

This is incredible. This is the moment where doctors place your squirmy, wormy little human on your body, and it wriggles around, and it finds your nipples, and it starts to eat, and you feel like actual God. But Kelsey is still weak.

She’s still recovering. She can’t hold her baby on her own. She’s not strong enough.

But the baby needs a name, and Kelsey has an idea.

And Louie informed me that her name isn’t the bride in Kill Bill, it’s Beatrix Kiddo. And so, our daughter’s name is Beatrix. Very classily after a Tarantino flick.

It’s best not to tell people over 40 or 45 that it’s after a Quentin Tarantino movie.

The reaction is almost batting a thousand for horror. You mean Beatrix Potter?

Sure.

Beatrix and Louie and Kelsey go home to Burke. And now, they’re a family of four. In my able-bodied experience, every child you add to the family makes it exponentially harder to parent.

The math does not make sense, but it’s like you’ve got one who needs your full attention is completely helpless, but that doesn’t matter to the other kids because they also still want you.

Kelsey has two kids under two, which is, whew, salute you, all of you who can pull that off. But she’s still disabled.

Just because I had a baby doesn’t mean that I’m healed or recovered.

Couldn’t hold her.

I couldn’t hold her. I couldn’t change her diapers. I couldn’t care for her, which felt so terrible that I’m a mom and I’m watching everybody else do these cares for my baby that I so desperately want to do.

In addition to Burke, you know, I couldn’t do anything for either of my kids, which felt so horrible, which is also where I had to let go of my control and let people just get things done instead of things being done in my perfect way.

It’s hard to do a story about crazy medical stuff without making it sound like a very dramatic plot line in an episode of Grey’s Anatomy, but there’s a reason that show was such a mega hit and why I’m revisiting it now.

Because what makes us human is our vulnerability, not just the Renee Brown vulnerability, but the fact that our bodies are fragile, our lives end. And as much as we want an answer to something, we most often don’t get one. Not a full one.

Not one that can fully explain why this thing happened to this person. There’s a possibility that Kelsey got CMV from Burke. From her toddler.

From kissing him on the mouth. Or from sharing a cup with him. But maybe not.

Even once they knew that Kelsey had CMV, Kelsey and Louie didn’t know whether Beatrix would be born healthy, or whether she’d have CMV also, which she does.

Because even now, knowing that Beatrix does have CMV, knowing that Beatrix is alive and beautiful and hitting most of her milestones on time, no one knows how CMV will affect her, or when. And as a parent, you’re always holding your breath.

You’re always ready for something to be terribly wrong with your child. But Kelsey and Louie have to be extra ready. They have to be extra vigilant.

You know, like, there’s no way that we could get out of this unscathed with her.

It feels like there’s still just, like, danger looming, I suppose. That anytime her speech, like, she’s having trouble with speech right now. So we brought her in for a speech eval.

And it’s like, OK, this is where it’s going to go. Like, she’s having issues hearing. Everything feels very alarming.

Very heightened.

Very heightened, yeah.

It’s like, oh, she can’t say her R’s. Well, yeah, she might not do that until she’s five.

And even though Kelsey is getting her mobility back, even though she made it to downtown St. Paul and up to the fourth floor studio, where she spent two hours sitting in a chair to talk to me, she’s not fully better. She’s not that same Kelsey.

She’s changed in ways that are really, really hard.

So Mother’s Day, I was so excited. It was our dog’s sixth birthday, which I had this perfect celebration in my mind of getting party hats and a pup cup for her. And it was going to be this big day.

And I spent it in bed the whole day, listening to Louie giggle and play with the kids downstairs. And that’s what my life is now. So while I’m really grateful to be here, it’s hard to be here this way.

So days like that really bummed me out.

She’s also changed in ways that are really, really good. There’s an illumination when the darkness lifts. Assifting through all the things in your life to see what actually matters.

And now I have this great sense of appreciation just for getting things done.

Doesn’t matter how it’s done, move on.

Kelsey and Louie call their life before CMV and GBS, their capital F, former life. Kelsey is back at work. She’s still a nurse, but she’s doing administrative work.

And her experience as a patient has changed the way that she nurses. It was always a job that she loved and that she was good at, but also one that she treated with a sense of distance.

I was never somebody who would allow myself to have too deep of a personal connection with the patients, because to me, it was very important to keep things professional, because that’s what I was there to do.

I was there just to take care of the patient and check these boxes, and that was it.

So while I was nice and had a smile and hopefully was the reassuring presence with them, I never realized until I became the patient how important it was to have those personal interactions with patients and to allow them to talk about their fears

and let them be vulnerable. And before I was sick, I was, like I said, very rigid, not fun person, told very few people about our miscarriage. Everything was so personal.

I don’t know if I didn’t feel a sense of worth that it wasn’t, you know, that I didn’t matter enough to talk to people about personal things, or if I would just rather listen to other people, because that’s how I felt connected to them.

But in this, it’s been just this like mind blowing experience that we have to be vulnerable with each other, and we have to allow ourselves the opportunities to get hurt and to share ourselves.

And that’s something I really regret not doing in my capital F former life with patients, is just that I never allowed myself to go there with them, and all the lost opportunities on what could have been really meaningful conversations or outcomes

for them, things that could have stuck with them the way that things have stuck with me, the way that the healthcare workers really touched me. I still talk to them. They’re still close to me.

I mean, they’re really the only ones who can understand truly what I’ve been through. You know, they’ve seen me at my worst times in ways that other people haven’t. So there’s a closeness there.

But the vulnerability has just been so powerful and welcome for me that it never would have happened without this experience. It’s been really liberating.

I always wonder, though, what these sorts of experiences do to a marriage or do for a marriage.

I think it’s honestly a privilege to be through what we have together, that we have been through the lowest lows and come out of it together, and there’s no other person that could have supported us in the way that Louie has.

And I know we’ve talked about it, people are like, oh my gosh, you’re so brave for staying, and you did such a great job, good for you, and it’s like, well, what’s the other choice? Am I going to leave?

What option is there here but to be a stand up guy?

I mean, our standards for men are very low, so they’re like, wow, he stayed. Oh, he didn’t start over. It’s a new family in Oklahoma.

What a guy.

Right, exactly. And if the woman does it, it’s just what they’re expected to do. Yeah, obviously, that’s what they would do.

So I think just greater sense of intimacy and kind of I see it as like a renewed sense of life that people don’t often get in their 30s, that we have already aged together in this strange way, that we’ve I know what it’s like to be 80 with my

husband. That’s not a glimpse that people often get. And I think, I mean, he’s just my best friend. He’s my rock.

I mean, I’m definitely completely changed.

I, it’s not lost on me what the outcome we were preparing for was and the fact that it didn’t happen. And we have who knows how many years left to, you know, see what comes next.

There’s this poem by John Ciardi, whose name I hope I’m pronouncing right. Hans Butoh just gave me a lesson in Italian. Is there anything he can’t do?

My mom sent this poem to me sometime after my first marriage, or maybe my dad sent it to me. I’ve shared it with lots of newly married couples, and I won’t read it here. Yeah, you know what?

I will. It’s called Most Like an Arch, This Marriage, and I’m gonna read you a GD poem on this podcast.

Most like an arch, two weaknesses that lean into a strength, two failings become firm, two joined abeyances become a term, naming the fact that teaches fact to mean. Not quite that, not much less. World as it is, what’s strong and separate falters.

All I do at piling stone on stone apart from you is roofless around nothing. Till we kiss, I am no more than upright and unset. It is by falling in and in, we make the all bearing point for one another’s sake.

In faultless failing, raised by our own weight. Louie and Kelsey are this arch leaning in to one another in the ways they didn’t expect to, raised by their own weight.

There are things that Kelsey has to let go of, things that Louie has picked up, things that just don’t matter the way they did before. There are shifts in their responsibilities and their dynamic and those shifts may be permanent or may be temporary.

Louie came to this interview in the middle of the day in St. Paul to be there with Kelsey. He took time off from his quote unquote business job, which is hard for him to do, to tell this story with her.

Some days when she’s brain fogged and bone tired, she leans in to him more than other days. But there’s no telling how that balance will shift over time. No telling what else this life or this marriage holds for them.

But I do hope they see themselves how I saw them on that summer afternoon, an all-bearing point for one another’s sake, raised by their own weight. I’m Nora McInerny, and this has been terrible. Thanks for asking, and I read you a poem.

Our senior producer is Hans Butow. He knows how to pronounce words in Italian. Marcel Malekebu is now an associate producer.

He got a promosh. He hates briefs, and therefore, everyone congratulate him on his promoshi. Hannah Meacock-Ross, still everything to us.

Jordan Turgeon, thanks for all your help. Special thanks to Megan Palmer, our intern. We appreciate you greatly.

Thank you for sticking around with us. Anna Weigel, always, always here for us. Truly.

Anna Weigel has a whole other job, and yet she works with us too. That’s very nice of her. Tracy Mumford, close personal friend of the pod, insightful human, great collection of clogs.

If you are looking for a book that will really rock your socks off, might I suggest reading Everything Happens by Kate Bowler? It is so fantastic.

It’s called Everything Happens and Other Lies I’ve Loved is the full title, but if you just type in Kate Bowler, Everything Happens, you’ll find the book. Our theme music is by Joffrey Wilson, and we are a production of American Public Media.