Concern: Stories about being worried

This week we present two stories from people gripped with concern for others.

Part 1: When biologist Andrew Holding's new baby stops feeding, his scientific instincts are put to the test.

Andrew Holding is a Senior Research Associate at Cancer Research UK’s Cambridge Institute and a Fellow of Downing College, Cambridge. His research programme brings together his experience of cutting edge mass spectrometry, DNA and RNA sequencing techniques with computational biology to investigate the function of the nuclear receptors. Andrew has worked on many science outreach and public engagement projects including founding and organising Skeptics in the Pub in Cambridge, which holds monthly talks by various speakers with the aim of highlighting the application of critical thinking and scientific method.

Part 2: After finding out her mother has breast cancer, high school teacher Nakeysha Roberts Washington gets hit with the news that one of her students has a brain tumor.

Nakeysha Roberts Washington, M.S. Ed is the owner and Creative Director of Genre: Urban Arts (GUA), a platform where artists can become published digitally and in print. Nakeysha spends much of her time preparing opportunities for creatives to share their art as part of the necessity for inclusion. All of this with the knowledge that working in the space of developing yourself as a creative is often seen as a privilege. Pop-up galleries and performances organized by Nakeysha via Gene: Urban Arts allows everyone in the creative community the ability to develop themselves as artists, become published and showcase their art through performance and exhibition. GUA is now a playground for 85+ creatives, all who have their own medium in which they create— Their own Genre. Nakeysha has been published in Routledge, various literary journals, and anthologies. In Spring 2018, she was honored with having a monologue performed in Brooklyn, New York, at the Billie Holiday Theater as part of a showcase entitled 50 in 50: What Place Do We Have in this Movement? Also in Spring of 2018, Nakeysha was a presenter at the UWM National Writing Project in which she conducted a creative writing workshop for educators. In June of 2018, a piece of her creative nonfiction entitled, “No Cream” was published in Wisconsin’s Emerging Writers: An Anthology of Nonfiction. In 2019 Nakeysha happily accepted a position as a producer with her favorite podcast The Story Collider as the “Midwest Connect” as she will be producing shows in Chicago, IL and Milwaukee, WI. Additionally, she will begin work on obtaining a doctoral degree in Urban Education at the University of Wisconsin- Milwaukee. Looking forward to July 2019, Nakeysha will be part of a panel at Modern Language Association’s 2019 International Symposium in Lisbon, Portugal as part of a panel to discuss culturally responsive pedagogy in relationship to the teaching of writing, an opportunity afforded to her through her connection with the University of Wisconsin- Milwaukee’s ACCESS program. Nakeysha’s writing and other work centers around social justice issues because she believes that it is a creative’s responsibility to interrogate and reveal the intricacies of social constructs through art.

 

Part 1: Andrew Holding

In 2012, Kim, my wife and I were expecting our second daughter.  Kim’s pregnancy had gone fairly well.  There were few complications but nothing serious. 

I had prepared by reading every book, every paper I possibly could.  I probably, at that time in my life, knew more about babies, childbirth, what was going to happen than I ever had before and will ever do again.  And that, as a scientist, is how I deal with these things.  I learn as much as I can so I’m prepared. 

Now, my wife was supportive of this.  She's a mathematician.  She now works in finance.  Her job is to distill down information and to then make predictions about what’s going to happen, so she found it useful to have someone to provide that bit of information.  I was there as a convenient data source and also to provide the odd hug. 

Now, we’d done this before as well so I knew kind of what we’re going for.  I had experienced some sleepless nights both from Lottie and from my time as a PhD student.  I have a sterilizer ready.  I had the child seat ready.  I had everything ready, even the huge pile of newborn nappies. 

Andrew Holding shares his story with the Story Collider audience at J3 at Cambridge Junction in Cambridge, UK in February 2019. Photo by Mark Danson.

Andrew Holding shares his story with the Story Collider audience at J3 at Cambridge Junction in Cambridge, UK in February 2019. Photo by Mark Danson.

On the 23rd we came home with a new child and we settled in.  Now, those first few weeks with a newborn child some people say are boring.  Boring is good.  Boring means your baby is sleeping when it’s meant to sleep, using his nappy when he's meant to use his nappy, eating when he's meant to eat.  Boring is good.  Boring is normal.

Now, Alessandra wasn’t exactly the same as her sister.  I had this idea we would follow the same protocol and the same things would happen and we’d get the same results.  Lottie had been the most content and loving child you could have.  She was so easygoing.  Now, Alessandra was a very needy child.  She needed her mother.  If she wasn’t feeding or sleeping, she had to be cuddled.  It was gorgeous but it left her mother exhausted. 

I helped where I could.  I cooked food, I took the kids out to the park, I changed many nappies but I couldn’t feed her, I couldn’t be her mom. 

About two weeks after Alessandra came home, I came down from the upstairs and walked into the kitchen and Kim was there.  Alessandra was on her shoulder and it was a beautiful sight.  Alessandra was just curled up in a calm and relaxed way that I hadn’t really seen before.  If you ask me now, I can tell you that she had the tiniest of baby smiles on her face.  If you spend any time with newborn babies you know that they can’t really smile.  They just only get the curling up the tip of the lips.  It is a special moment. 

And her mother Kim is just starting to relax.  Then I asked a question.  As I asked it, suddenly my gut clenched.  It’s a simple question.  “When did Alessandra last feed?” 

Then there was a pause because both of us, sleep-deprived, not really aware what’s going on, realized it was probably a bit too long.  Then we started to try and work out what had gone on, where had we been, what had been happening during the day, and we realized it had probably been most of the day. 

I went over to my daughter and I put my arms under hers and lifted her off her mother.  As I did, her arm just slipped down her mother’s shoulder and fell to her side.  All that energy, all that fighting, all the way she would have screamed if I took her away from her mother before was gone.  She was breathing but she was absent. 

Now, what came next should have been obvious but you don’t immediately want to accept it.  It’s like waking from a nightmare except reality is worse than the dream.  Then you accept, you know what needs to be done.  And my pulse started to race. 

Now, I have no memory what happened between the moment I made that decision and the moment I am marching into Addenbrooke’s A&E with my daughter in a car seat trying to balance that need for attention with that need to protect my child.  We get diverted into the Pediatric A&E and we sit down, and it could have been ten seconds, it could have been ten years.  We wait. 

A pediatrician comes over and he carefully takes us over to the beds they have there.  There’s this pale green bed.  And my daughter, I place her on this bed and she's so tiny compared to that vast expanse.  She's curled up.  That newborn nappy, which is tiny, dwarfs her. 

The pediatrician checks, tries to see if he can work out what’s going on.  He does the basics and he decides there's a possible infection so decides to take a lumber puncture.  He picks up the smallest needle I've ever seen in my life, it’s like a hair, and he tries to pierce in between the vertebrae and the spine.  As he does this, you hold your breath, too scared to even breathe because you might distract the highly skilled professional who knows exactly what he's doing.  And he fails.  He tries again and still he can’t reach any fluid. 

This tense moment, followed by a deep breath, happens, 3, 4, 5 times.  He then concedes it isn’t going to happen.  He admits our daughter to the ward.  Except he can’t admit an infectious girl to the neonatal ward because there's some very sick children there already and we don’t need to add to that.  He can’t admit her to the baby ward because that’s full, so we get directed towards the children’s ward. 

Andrew Holding shares his story with the Story Collider audience at J3 at Cambridge Junction in Cambridge, UK in February 2019. Photo by Mark Danson.

Andrew Holding shares his story with the Story Collider audience at J3 at Cambridge Junction in Cambridge, UK in February 2019. Photo by Mark Danson.

We walk in.  It’s late at night.  I’m looking around in this little enclave of light within the darkness but most of the people have gone to bed.  We go to our bay and I sit down and Kim sits next to me.  We put our baby on this bed and I just see this blue stretcher surrounded by yellows and greens and she's still, despite her being smaller than the last one, looks so fragile and so tiny. 

We sit and we don’t talk because we both know what the other wants to say.  We both want someone to say it’s going to be okay, but we both know it might not be.  We both don’t really know what’s going on.  We've got no diagnosis.  We've got no ideas.  I've got no understanding of what’s happening.  So we sit there in silence for an hour, maybe two. 

Then I have the hardest decision in my life.  Lottie is waiting at home and I have to go and take care of her.  And one of us has to stay with my daughter.  It’s a hard choice but it’s also not a choice, because Kim wants to feed our daughter if it’s possible and I can’t do that. 

So the decision is made.  We get up and I leave.  I leave my wife and child alone in the hospital.  I head home, I put Lottie to bed and she's too young to really understand what’s going on.  She's sleeping on the bedroom, she's happy enough and I go sit on my bed and I put out my phone and call Kim. 

It’s not getting any better.  Alessandra has started to have seizures.  Kim is worried.  The nurses say this is normal, but of course this isn’t normal.  My wife doesn’t know what to do and all I can say is, “Well, take notes.  Write down when it happens.  Take data.”  The scientist in me speaking, trying to somehow control the situation. 

Now, I head in with Lottie for the next few days but it becomes a blur.  Time is meaningless.  Faces come and go.  You start to recognize the shift patterns of the rotors, but nothing is changing. 

On about that second day, I looked at Kim and said, “I need you to take Lottie away for a moment.”  She protests then she accepts.  And I sit down over my daughter’s bed and I have a first moment I've ever had alone with her.  I try to reconcile if that can also be the last. 

I start to grieve.  I start to cry and my tears drop down onto her bed and she's laying there so vulnerable, tubes and monitors on her, and I have no answers.  I have no diagnosis.  I have no knowledge of what’s going to happen.  And as I grieve, I realize every single thing I planned, I wanted, I dreamed, it’s all wiped out.  We’re just living to the next day. 

Time kept moving but, as I say, normal has changed.  Slowly there were hints.  The oxygen meter may be taken away or they might just be a little bit more comforted about her glucose levels.  But we just crept to that day when, eventually, they discharged us.  No answers.  No control.  No understanding. 

We took her home.  But then every milestone wasn’t about her success.  It was another data point, another question, was she going to be okay?  This is a girl who lost complete control of her body temperature, her sugar levels, her breathing.  She’d had seizures.  What harm had it done?  And everything became invested in that. 

Seven years later, every spelling test she passes is a success for her to getting back on that path.  And every maths test she failed is a question if she's going to make it.  It’s like an exponential decay.  A process which slowly decreases, slowly turns towards zero but never actually gets there.  Thank you.

 

Episode Transcript

Part 1: Nakeysha Roberts Washington

I’m straightening my desk.  Now, to be fair, me straightening my desk is not what some might consider straightening the desk.  It is actually more of an organization of piles.  I have the books-that-I’m-teaching pile.  I have the books-that-I-keep-on-my-desk-to-make-sure-I-look-smart pile.  I have the papers-that-I-know-exactly-what-these-papers-are pile.  And I have the I-don't-know-exactly-what-these-papers-are pile, but I keep them just in case anybody needs them. 

This particular week is more difficult than others.  This week, my mother has been diagnosed with Stage 3 breast cancer.  The particular cancer that my mother has is called HER2.  This cancer has something to do with estrogen.  My mother’s doctor, Dr. Kamaraju looked at me dead in the face with her stern face and her long, wavy, black hair and her sensible shoes and she told me that my mother’s prognosis was good.  That if my mother followed the course of treatment exactly how she had outlined them, my mother would be okay.  And I believed her. 

So this, among many other things, was on my mind while I was straightening my desk. 

While I was straightening my desk, two students rushed in the room and one of them had been missing for a while.  Well, actually, I wasn’t really sure if she had been missing of if I had been missing because my mother’s appointments fell like raindrops.  First, there was one and then, just like when you are walking down the street and a raindrop falls and hits you and you're not exactly sure if it’s raining or not, so you stop and you look around, and you're not really sure at first and so you keep going.  And then you check the pavement and, eventually, you know that it is indeed raining.  My mother’s appointments fell like a drenching monsoon. 

So my student who has been missing she's walking over to me, and as she's walking to me I see that her eyes are red and her hair is disheveled.  She comes to me and she puts her arms around my waist and she lays her head on my shoulder. 

She says, “I have really bad news to tell you.  My migraines aren’t migraines.  The doctor said that I have brain tumors and that they may be cancerous and that I’m going to need surgery.”

Nakeysha Roberts Washington shares her story with the Story Collider audience at Caveat in New York City in March 2019. Photo by Zhen Qin.

Nakeysha Roberts Washington shares her story with the Story Collider audience at Caveat in New York City in March 2019. Photo by Zhen Qin.

And at this moment I realize that I don't know really much more about cancer than I learned at my mother’s appointment.  Now, see, I had been working with this particular high school group for three years so I've told them for the last three years at the beginning of the year that we will build a relationship of trust and honesty.  That this classroom was a place for trust and respect and that we would have an environment where everyone felt safe.  And that if they needed an adult that I would be an adult that they could depend on. 

So when my student told me that she has brain tumors, I felt the center of my chest fall to the ground, kind of like how those cartoons are shot with a cannonball and then they have that large gaping hole in the center of their chest where you can see clear through to the horizon. 

So as I have my head laid on my student’s head and she's crying and I’m crying too, and I’m crying for her and I’m crying for my mother, I’m just wondering why the world has to be so cruel.  And I’m also thinking about what her tumors might look like. 

I have a very vivid imagination and so while she's talking about her tumors, I’m imagining my mother’s x-ray placed against the wall.  The tumors are white and roundish against the black plastic and I imagine that those tumors that my mother has might look like the tumors that my student has, white and roundish, placed in between her gray matter. 

I look my student in the eye and I tell her that, “if you need anything,” not the kind of ‘anything’ that people say to you and they don’t really mean it but the kind of ‘anything’ that you know the person means it, that, “if you need anything that I will be here for you.” 

The days progress and my routine now is I have to take my mom to her doctor’s appointments and I’m checking on my student in between the times that I’m there.  She begins to fall asleep in class more frequently.  She sighs that she's not sleeping very well at night because her head is hurting at night and so during the daytime she needs to sleep. 

And during this time my mother, she's showing the signs of chemo.  So my mother had to take three different chemos.  When the chemos began to show themselves I knew that my mother would eventually lose her hair.  I didn’t think that it would be such a big deal because my mother’s hair is very, very short.  She keeps it in a short pixie cut and her hair is about the length of your fingertip.  So since she didn’t have very much hair, I didn’t think that it would be a big deal, but it was.  It was a big deal when her hair fell away and her eyelashes and her eyebrows.  Eventually, she couldn’t keep her food down and the weight fell away and her nails turned a darkish brown. 

My mother, my very, very beautiful mother… now, I’m not just saying that my mother is very beautiful because I, too, am beautiful.  I don't want to make this about me, but my very beautiful mother was very self-conscious about how she looked.  So we went to a designer consignment shop and bought her designer silk scarves to cover her head.

Nakeysha Roberts Washington shares her story with the Story Collider audience at Caveat in New York City in March 2019. Photo by Zhen Qin.

Nakeysha Roberts Washington shares her story with the Story Collider audience at Caveat in New York City in March 2019. Photo by Zhen Qin.

And my student progressively got worse.  She was missing more and more days.  She had lots of doctors appointments and she was sleeping in class and turning work in late and, mostly, just not showing up at all.  One day I was walking in from lunch and I see my student standing near my classroom against the locker speaking to my colleague.  And my colleague as I walk up as my student, “Did you tell her,” and my student nods her head yes.  So from then on I have someone to commiserate with. 

My colleague tells me that she's going to contact the social worker to have the social worker call home to tell her mom and her family that there are services that we can provide as a school to help my student make it through. 

Strangely, though, a few days later, I’m driving to go pick my son up from his elementary school.  To get there I have to pass another high school and I see what looks like my student walking angrily, pacing back and forth in front of the school.  My eyesight isn’t exactly the best.  I've actually gone up to strangers and hugged them because I thought they were someone else and so I thought it would be a bad idea for me to stop in front of this high school and talk to a child that may not be my student and so I decided the next day that I will ask her if that was her.

So I did see her the next day actually.  I said, “So, were you at Madison High School?” 

She said, “Yes.” 

I said, “Why were you there?”

And she told me, “Some girls were going to jump my cousin and I wanted to make sure that nobody touched her.” 

Then I asked her, “Why, considering your condition, would you go somewhere where you may get into a physical altercation?  Why wouldn’t you talk to an adult?  Why wouldn’t you make a better decision?  You have all of these decisions that you could have done better with.”  And I give her my most stern, English-teacher look and tell her that I’m disappointed. 

She apologizes and says that she’ll take better care of herself and that she’ll take better care of situations. 

So in my classroom, I’m packing my bags up.  Actually, I’m going to go take my mom to another doctor’s appointment and my colleague walks in the room.  She doesn’t just walk in the room.  She comes in and she's actually really, really shocked looking and smiling and I’m not sure what’s going on.  I don't know.  I have no clue. 

And she tells me, “You are not going to believe this.  This is so crazy you are not going to believe this.” 

And I said, “What?  Because I need to go take my mom to her appointment so I really don’t have time right now for like something to have come up that I need to take care of.” 

She says, “This is so crazy.  You are not going to believe this.” 

Clearly, as you can tell, I was pretty impatient with her.  She tells me that the social worker called home to my student’s house and that the mother answered the phone and that the mother said, “Tumor?  What tumor?  She ain’t got no damn tumor.  There's nothing wrong with her.” 

Now I’m shocked and surprised and I say, “She doesn’t have a tumor?” 

She's like, “No.  No tumor.” 

In retrospect, I realize that this is the moment that I've been waiting for since I was eight years old, that this is the moment where I could have delivered one of my absolute favorite movie lines, but I didn’t realize it then.  “It is not a tumor.” 

So once I got over my shock and surprise, I still have to go take my mom to her appointment.  So I make my way down the hallway and into the stairwell.  I’m at the top of this stairwell and I see my student on the next landing.  We lock eyes and then she just keeps walking, which is absolutely unheard of.  She didn’t stop to say hi.  She didn’t give me a hug, like she normally does.  And I realize in that moment that she knows I know, and she knows that part of our deal is for us to have an honest relationship. 

I also realized in that moment that I don't have to worry about her anymore.  I don't have to worry about her life, I don't have to worry about her head being shaved, and I don't have to worry about the incisions that will have to come from the surgery, and I don't have to worry about the bloody scabs that will eventually form, and I don't have to worry about the stitches and that she's fine.  It’s not a tumor. 

I also realize that, now, I’m free to worry about my mother and I’m free to just walk away and not have such a tight tie to the school.  I can just worry about making sure that my mother survives, because my student broke our deal.  She lied.