Curtis Stratton, an author from Texas got in contact with me on March 18, 2017 because he was interested in the medical condition that I had called Anterior Cutaneous Nerve Entrapment Syndrome and ever since, we have been working together on a book called Patient X. The book is about an adolescent (me) who falls violently ill and they must seek a diagnosis before it is possibly too late, all the while battling misdiagnoses and skeptical doctors.
The first step was to come up with a title. Some of the title options we came up with were:
Inside Fire
Rare
Patient X
Without a Cure
Race to Nowhere
We ended up choosing Patient X as the official title.
Inside Fire
Rare
Patient X
Without a Cure
Race to Nowhere
We ended up choosing Patient X as the official title.
Chapter One - The Girl Known as "Patient X"
Why “Patient X?”
The most human instinct when one falls ill is to firstly diagnose the problem. “What do I have?” Your local doctor, WebMD, your mom -- they generally have the answer. And the fix is normally just as straightforward.
Except, imagine if the answer weren’t that simple.
Fighting shadows in darkness while blindfolded comes close to describing the dance that is known as “finding your poison.” When days turn to weeks, weeks into months, months into years, the pain does not leave on civil terms. Wellness does not blossom as surely as spring flowers do. And when the body grows weak, how much must a person ask of their mind to pick up the slack?
We all need a certain amount of fight to keep putting one foot in front of the other.
“X” is that one factor, that one variable, that one little bit of the unknown toward which we strive to find. It’s that spring at the end of winter. But even winter ends. An unknown enemy doesn’t. Not until you find its name, finds its cure, and fight it with all your might until you own yourself once more.
Twenty months. Twenty months from the last major diagnosis, “You have Celiac Disease.” And after these twenty months, the list became long and undistinguished, as each diagnosis was as wrong as the last: “You have the stomach flu; your acid reflux has returned; you’re lactose intolerant; you have irritable bowel syndrome; you’re just constipated, take some MiraLAX when you get home; it’s all in your head, would you like to talk to someone?” Pain that leads to an endoscopy and colonoscopy, pain that has lasted a year-and-a-half, and, “Would I like to talk to someone?”
That’s another thing: “X” is what people label you as when they’re not entirely sure how to label you. Was I just a girl with an unknown illness? Was I just a girl who was exaggerating her symptoms? Was I just a student? A cheerleader? A dancer?
Who was I? What was I? What did I have?
“X.” X is the simplest way of combining the multiple opinions of who I was, what I had, and what I was experiencing. There were people in all three camps, all with varying opinions. Now, imagine that your doctor doesn’t believe in this unidentifiable enemy, this disease without a name.
What do you do?
When my family and I began to settle down for Christmas break in December of 2014, we expected nothing more than a holiday surrounded by our loving family, friends, a peaceful home, and good health. The winter was a warm one. The area around Worcester, Massachusetts isn’t known for its warm winters. Perhaps, spring was on us sooner than we knew? The hope of a new, better year, with the lack of the biting winters of my hometown, made for a feeling that only hope mixed with spring can offer. But, instead of being outside, the false spring for me had only began, as I spent most of my time in bed with stomach pain.
But, that was just the beginning.
After New Year’s, I was constantly falling asleep while completing homework, leaving school throwing up, my body was weak, and I continued to have a constant, localized pain in my stomach. The pain was sharp, like a piece of broken glass. My mom decided that it was time for us to seek medical help. It was now January and for the next two months I felt like I lived at my local pediatric office. My primary care physician kept up to date with me, even on her own time.
What was originally a Christmastime illness in December 2014 turned into Celiac’s Disease in February 2015. Celiac’s is simply an inability to process gluten. Gluten, simple enough. But even a gluten-free diet hasn’t spared me. Even a gluten-free diet couldn’t aid some of the best doctors in the country -- not now, at least. Okay, gluten isn’t it. Or, so I think. The pain continues. The pain sharpens. The pain becomes such a part of life that it almost subsides into the background. Almost. But, Celiac remains the “official diagnosis” -- nevermind that the symptoms have only gotten worse.
We were relieved. It was finally over! I began eating strictly gluten free right after we received the results. Except, my stomach pain continued and progressed. For the next 20 months, I faced multiple misdiagnosis and tried countless medications. “You have the stomach flu; your acid reflux has returned; you’re lactose intolerant; you have irritable bowel syndrome; you’re just constipated, take some MiraLAX when you get home; it’s all in your head, would you like to talk to someone?” The list continues. And so did my determination.
I was singlemindedly determined to get an answer -- what was it that I had? Could it be cured? Or, most importantly, could it be something that, left untreated, may be damaging or terminal?
The drive from the Worcester, Massachusetts area to Boston isn’t a particularly interesting one. Only once the Turnpike takes you through Newton do the sights become more notable, more iconic. An hour on the Turnpike into Downtown Boston leads me past some of Boston’s more notable locations: Fenway, Berklee, Harvard Medical. It is here, in the shadow of these sights that scream “Boston” louder than the loudest Sox fan, that my struggle had unfolded.
The rotary that this journey continued on led me to a nutritionist -- was I following my gluten-free diet strictly enough? She didn’t seem to think so. That was June ‘15. More than six months of this unbeatable pain, and it came down to diet? An ultrasound the next month didn’t show anything abdominally abnormal. The list of symptoms and matching potential culprits got shorter and shorter. A new gastroenterologist at Boston Children’s was referred to me in August. I’ll call him Dr. Rutherford. New doctor, same story. The scans following my pairing with Dr. Rutherford showed that there was nothing wrong with my gallbladder. Dr. Rutherford said I was lactose intolerant. Diet, again.
I became dairy-free. An emergency room visit and a further scans showed nothing wrong with my gallbladder, and the symptoms only got worse. Worse, worse, worse. All the king’s doctors couldn’t put me together again, or so it seemed. It was twenty months after my Celiac’s diagnosis that I made the routine journey to Boston again to meet with Dr. Rutherford in a follow-up appointment.
It was the walk through the halls, past the familiar sights of rooms emptied and occupied, through the various wards of the hospital, past the faces I’ve seen so often and said “hello” to more times that I can count, up the stairs, up the elevators, down the halls, winding through the institution of my supposed salvation, that I marched toward an unknown answer of an unknown enemy, walking forward -- one foot in front of the other -- not because I chose to but because I had to. I had to face this enemy, even if no one else would. Even if no one else would stand the line with me. No matter the costs, I had to win.
Here, in this medical institution of greatness, was where all the answers were supposed to be. Where all the help was supposed to originate. Where my life could be reclaimed -- it was supposed to be here. But, as I arrived at Dr. Rutherford’s office and knocked on the door for not the first time, nor the last, I was greeted into an office of prestige, adorned with walls of esteem, facing the man with whom my fate lie. Then, the charts, the scans, and the suggestion that changed the whole battle: “It’s all in your head. Would you like to talk to someone?”
That’s when I, Kendra Peterson, looked the “X” in the eye and knew the fight had only just begun.
The most human instinct when one falls ill is to firstly diagnose the problem. “What do I have?” Your local doctor, WebMD, your mom -- they generally have the answer. And the fix is normally just as straightforward.
Except, imagine if the answer weren’t that simple.
Fighting shadows in darkness while blindfolded comes close to describing the dance that is known as “finding your poison.” When days turn to weeks, weeks into months, months into years, the pain does not leave on civil terms. Wellness does not blossom as surely as spring flowers do. And when the body grows weak, how much must a person ask of their mind to pick up the slack?
We all need a certain amount of fight to keep putting one foot in front of the other.
“X” is that one factor, that one variable, that one little bit of the unknown toward which we strive to find. It’s that spring at the end of winter. But even winter ends. An unknown enemy doesn’t. Not until you find its name, finds its cure, and fight it with all your might until you own yourself once more.
Twenty months. Twenty months from the last major diagnosis, “You have Celiac Disease.” And after these twenty months, the list became long and undistinguished, as each diagnosis was as wrong as the last: “You have the stomach flu; your acid reflux has returned; you’re lactose intolerant; you have irritable bowel syndrome; you’re just constipated, take some MiraLAX when you get home; it’s all in your head, would you like to talk to someone?” Pain that leads to an endoscopy and colonoscopy, pain that has lasted a year-and-a-half, and, “Would I like to talk to someone?”
That’s another thing: “X” is what people label you as when they’re not entirely sure how to label you. Was I just a girl with an unknown illness? Was I just a girl who was exaggerating her symptoms? Was I just a student? A cheerleader? A dancer?
Who was I? What was I? What did I have?
“X.” X is the simplest way of combining the multiple opinions of who I was, what I had, and what I was experiencing. There were people in all three camps, all with varying opinions. Now, imagine that your doctor doesn’t believe in this unidentifiable enemy, this disease without a name.
What do you do?
When my family and I began to settle down for Christmas break in December of 2014, we expected nothing more than a holiday surrounded by our loving family, friends, a peaceful home, and good health. The winter was a warm one. The area around Worcester, Massachusetts isn’t known for its warm winters. Perhaps, spring was on us sooner than we knew? The hope of a new, better year, with the lack of the biting winters of my hometown, made for a feeling that only hope mixed with spring can offer. But, instead of being outside, the false spring for me had only began, as I spent most of my time in bed with stomach pain.
But, that was just the beginning.
After New Year’s, I was constantly falling asleep while completing homework, leaving school throwing up, my body was weak, and I continued to have a constant, localized pain in my stomach. The pain was sharp, like a piece of broken glass. My mom decided that it was time for us to seek medical help. It was now January and for the next two months I felt like I lived at my local pediatric office. My primary care physician kept up to date with me, even on her own time.
What was originally a Christmastime illness in December 2014 turned into Celiac’s Disease in February 2015. Celiac’s is simply an inability to process gluten. Gluten, simple enough. But even a gluten-free diet hasn’t spared me. Even a gluten-free diet couldn’t aid some of the best doctors in the country -- not now, at least. Okay, gluten isn’t it. Or, so I think. The pain continues. The pain sharpens. The pain becomes such a part of life that it almost subsides into the background. Almost. But, Celiac remains the “official diagnosis” -- nevermind that the symptoms have only gotten worse.
We were relieved. It was finally over! I began eating strictly gluten free right after we received the results. Except, my stomach pain continued and progressed. For the next 20 months, I faced multiple misdiagnosis and tried countless medications. “You have the stomach flu; your acid reflux has returned; you’re lactose intolerant; you have irritable bowel syndrome; you’re just constipated, take some MiraLAX when you get home; it’s all in your head, would you like to talk to someone?” The list continues. And so did my determination.
I was singlemindedly determined to get an answer -- what was it that I had? Could it be cured? Or, most importantly, could it be something that, left untreated, may be damaging or terminal?
The drive from the Worcester, Massachusetts area to Boston isn’t a particularly interesting one. Only once the Turnpike takes you through Newton do the sights become more notable, more iconic. An hour on the Turnpike into Downtown Boston leads me past some of Boston’s more notable locations: Fenway, Berklee, Harvard Medical. It is here, in the shadow of these sights that scream “Boston” louder than the loudest Sox fan, that my struggle had unfolded.
The rotary that this journey continued on led me to a nutritionist -- was I following my gluten-free diet strictly enough? She didn’t seem to think so. That was June ‘15. More than six months of this unbeatable pain, and it came down to diet? An ultrasound the next month didn’t show anything abdominally abnormal. The list of symptoms and matching potential culprits got shorter and shorter. A new gastroenterologist at Boston Children’s was referred to me in August. I’ll call him Dr. Rutherford. New doctor, same story. The scans following my pairing with Dr. Rutherford showed that there was nothing wrong with my gallbladder. Dr. Rutherford said I was lactose intolerant. Diet, again.
I became dairy-free. An emergency room visit and a further scans showed nothing wrong with my gallbladder, and the symptoms only got worse. Worse, worse, worse. All the king’s doctors couldn’t put me together again, or so it seemed. It was twenty months after my Celiac’s diagnosis that I made the routine journey to Boston again to meet with Dr. Rutherford in a follow-up appointment.
It was the walk through the halls, past the familiar sights of rooms emptied and occupied, through the various wards of the hospital, past the faces I’ve seen so often and said “hello” to more times that I can count, up the stairs, up the elevators, down the halls, winding through the institution of my supposed salvation, that I marched toward an unknown answer of an unknown enemy, walking forward -- one foot in front of the other -- not because I chose to but because I had to. I had to face this enemy, even if no one else would. Even if no one else would stand the line with me. No matter the costs, I had to win.
Here, in this medical institution of greatness, was where all the answers were supposed to be. Where all the help was supposed to originate. Where my life could be reclaimed -- it was supposed to be here. But, as I arrived at Dr. Rutherford’s office and knocked on the door for not the first time, nor the last, I was greeted into an office of prestige, adorned with walls of esteem, facing the man with whom my fate lie. Then, the charts, the scans, and the suggestion that changed the whole battle: “It’s all in your head. Would you like to talk to someone?”
That’s when I, Kendra Peterson, looked the “X” in the eye and knew the fight had only just begun.
Chapter Two - Courage Within
You know how you can do things so many times that it almost becomes impossible to tell the difference between the first time you did it and the last? A blur of colors, where one is the other, the other another.
I had a habit of collecting the bracelets they give you when you go to the hospital. I had no fewer than fifteen bracelets, collected mementos of the number of battles fought. Almost as if they were scars, and I wanted to be able to count them afterward -- to say to myself, “Look, see how much you can take?”
That’s often the hardest part: not knowing how far you can go. There’s that saying about you being able to go much further than your mind says you can. But, what if the mind is where the battle is fought?
Surgeries and procedures aside, the greatest battle was the one inside. The one where it was myself vs. myself, a never-ending standoff of which side could prevail: that which said I could, and the other that said I couldn’t.
So, you can say the visits to Boston Children’s became a blur, and the collection of those mementos of times past was my way of being able to tangibly feel the spoils of my battles, as if to say to the side that wanted to give up, “There, you see?”
But, then, again, there were times when going-on was the only option. It was that combination of knowing no other way than fighting once more and the battle within that led to me being quiet that summer day.
It was the morning. We -- my mom, Lisa, and I -- were driving to Boston Children’s for what we hoped was the last time. Though I was never really nervous about appointments, as they had all become pretty banal by that point, I was always quite nervous before procedures and surgeries. I suppose, in hindsight, that the nervousness was understandable, but, I always did my best to not let it show. Why? Well, I didn’t want to seem weak. Maybe, that added to the turmoil inside. The pain amplified by the doubt, complemented by bottling the nerves up -- well, it was always a strong tonic.
I tried my best to ignore this all by distracting myself with directions and music. My phone did the work of both directing us toward Boston and playing music to pass the time. Country music filled the car as I looked out the window, Mom and I both in relative silence. What could be said?
The drive from Upton to Boston on the Pike was always a drab one. Brown, wooden barriers on the sides, green-brown overpasses, and plenty of trees -- perfect for looking out the window and just watching the time go by.
I shifted in my seat, checking where we were in relation to Boston. About halfway. Mom looked at me. “You doing alright?”
I shrugged. “I think so.”
“Nervous?”
Yes. “No, not really.”
“Dr. Manney seemed pretty confident about it all.”
“You talked to him?”
“Well, the last time we met with him. It seems to be a pretty standard procedure.”
“He said that?”
“He did. It’s just that ACNES is such a rare thing, the end cure isn’t necessarily as straightforward as other things.”
“I know.”
“Kendra, this will work. He knows it will.”
“I know.”
“Do you?”
I looked at her. “Yeah, I think so.”
“You’re in good hands.”
Past experiences had led me to have a certain amount of skepticism for the “good hands” or the “best and the brightest.” But, maybe optimism was the best approach to this one.
“Yeah, I know.”
“And, hey, you’ve got a lot to look forward to, what with the cruise and everything.”
A nice addition to the summer, for sure. A nice escape before returning for one last year of high school. Plus, my sister coming along would be fun.
“It’ll be nice. Bethany’s still good to come with us?”
“Sure is.”
“Awesome.”
A moment or two of silence passed before I asked her a question.
“Mom?”
“Hmm?”
“Why’d you believe me?”
The question must’ve struck her as odd, since she turned her head to look at me with a look. “What?”
I adjusted my seatbelt a bit. “Well, I mean, why’d you believe me? Even when Dr. Rutherford said it was in my head?”
“Oh, well… honey, how could I not?”
“Lots of parents don’t.” I had read about cases of ill children and parents who weren’t 100% behind them, especially the longer the fight for a cure when the problem wasn’t immediately obvious (i.e. cancer, or something more widely-studied). I asked because I was grateful. Grateful, but curious.
“They aren’t much of a parent, then.”
“Yeah.”
The radio filled the silence before she took a breath and continued.
“When we found out that you were going to be a breech birth, we had to plan for another C-Section. I had been through one already with Bethany, and, the doctors were very cautious about the whole thing. Lots of complications in a C-Section, period, but a repeat is another story.”
I nodded, having heard this part of the story before. She continued. “But, when it was time and I got to hold you for the first time… it was clear that you were a fighter. From the beginning. And I couldn’t have been prouder of you from that very first moment. So, when it came time to fight this fight, especially given how young you were when this all started, there was no way in hell I was going to leave you alone on it. You and I, we fight together. That’s how it was at the beginning, after all.”
I don’t quite know what to say. She smiled at me. “So, you ask ‘why?’ The ‘why’ is because that’s what we do. We fight together, or we don’t fight at all.” She grinned. “Plus, I don’t give a shit what some doctor says. You say you’re in pain, you’re in pain. End of story.”
The rest of the ride was spent in comfortable silence, especially since I knew that it wasn’t just a fluke that I had the support I did -- the support I had was a part of me, regardless of anything else.
We arrived per usual in the Boston Children’s parking garage, parked, and walked in. We were greeted by all of the employees, who had all mostly been there since the beginning. I got another bracelet, and I silently hoped as it was put on me that, perhaps, this was going to be the last one.
As I waited for Dr. Manney to brief me on the surgery, I saw a girl, no older than eight, walking down the hallway past the room where I waited. She was walking slowly, a nurse by her side. She went to put a Post-It on the board where all the patients could write down what inspired us to keep moving, to be unstoppable in our various struggles for a cure. She posted it and walked away slowly. The note, written in big, child-like letters, was three words-long:
“I have to.”
I had a habit of collecting the bracelets they give you when you go to the hospital. I had no fewer than fifteen bracelets, collected mementos of the number of battles fought. Almost as if they were scars, and I wanted to be able to count them afterward -- to say to myself, “Look, see how much you can take?”
That’s often the hardest part: not knowing how far you can go. There’s that saying about you being able to go much further than your mind says you can. But, what if the mind is where the battle is fought?
Surgeries and procedures aside, the greatest battle was the one inside. The one where it was myself vs. myself, a never-ending standoff of which side could prevail: that which said I could, and the other that said I couldn’t.
So, you can say the visits to Boston Children’s became a blur, and the collection of those mementos of times past was my way of being able to tangibly feel the spoils of my battles, as if to say to the side that wanted to give up, “There, you see?”
But, then, again, there were times when going-on was the only option. It was that combination of knowing no other way than fighting once more and the battle within that led to me being quiet that summer day.
It was the morning. We -- my mom, Lisa, and I -- were driving to Boston Children’s for what we hoped was the last time. Though I was never really nervous about appointments, as they had all become pretty banal by that point, I was always quite nervous before procedures and surgeries. I suppose, in hindsight, that the nervousness was understandable, but, I always did my best to not let it show. Why? Well, I didn’t want to seem weak. Maybe, that added to the turmoil inside. The pain amplified by the doubt, complemented by bottling the nerves up -- well, it was always a strong tonic.
I tried my best to ignore this all by distracting myself with directions and music. My phone did the work of both directing us toward Boston and playing music to pass the time. Country music filled the car as I looked out the window, Mom and I both in relative silence. What could be said?
The drive from Upton to Boston on the Pike was always a drab one. Brown, wooden barriers on the sides, green-brown overpasses, and plenty of trees -- perfect for looking out the window and just watching the time go by.
I shifted in my seat, checking where we were in relation to Boston. About halfway. Mom looked at me. “You doing alright?”
I shrugged. “I think so.”
“Nervous?”
Yes. “No, not really.”
“Dr. Manney seemed pretty confident about it all.”
“You talked to him?”
“Well, the last time we met with him. It seems to be a pretty standard procedure.”
“He said that?”
“He did. It’s just that ACNES is such a rare thing, the end cure isn’t necessarily as straightforward as other things.”
“I know.”
“Kendra, this will work. He knows it will.”
“I know.”
“Do you?”
I looked at her. “Yeah, I think so.”
“You’re in good hands.”
Past experiences had led me to have a certain amount of skepticism for the “good hands” or the “best and the brightest.” But, maybe optimism was the best approach to this one.
“Yeah, I know.”
“And, hey, you’ve got a lot to look forward to, what with the cruise and everything.”
A nice addition to the summer, for sure. A nice escape before returning for one last year of high school. Plus, my sister coming along would be fun.
“It’ll be nice. Bethany’s still good to come with us?”
“Sure is.”
“Awesome.”
A moment or two of silence passed before I asked her a question.
“Mom?”
“Hmm?”
“Why’d you believe me?”
The question must’ve struck her as odd, since she turned her head to look at me with a look. “What?”
I adjusted my seatbelt a bit. “Well, I mean, why’d you believe me? Even when Dr. Rutherford said it was in my head?”
“Oh, well… honey, how could I not?”
“Lots of parents don’t.” I had read about cases of ill children and parents who weren’t 100% behind them, especially the longer the fight for a cure when the problem wasn’t immediately obvious (i.e. cancer, or something more widely-studied). I asked because I was grateful. Grateful, but curious.
“They aren’t much of a parent, then.”
“Yeah.”
The radio filled the silence before she took a breath and continued.
“When we found out that you were going to be a breech birth, we had to plan for another C-Section. I had been through one already with Bethany, and, the doctors were very cautious about the whole thing. Lots of complications in a C-Section, period, but a repeat is another story.”
I nodded, having heard this part of the story before. She continued. “But, when it was time and I got to hold you for the first time… it was clear that you were a fighter. From the beginning. And I couldn’t have been prouder of you from that very first moment. So, when it came time to fight this fight, especially given how young you were when this all started, there was no way in hell I was going to leave you alone on it. You and I, we fight together. That’s how it was at the beginning, after all.”
I don’t quite know what to say. She smiled at me. “So, you ask ‘why?’ The ‘why’ is because that’s what we do. We fight together, or we don’t fight at all.” She grinned. “Plus, I don’t give a shit what some doctor says. You say you’re in pain, you’re in pain. End of story.”
The rest of the ride was spent in comfortable silence, especially since I knew that it wasn’t just a fluke that I had the support I did -- the support I had was a part of me, regardless of anything else.
We arrived per usual in the Boston Children’s parking garage, parked, and walked in. We were greeted by all of the employees, who had all mostly been there since the beginning. I got another bracelet, and I silently hoped as it was put on me that, perhaps, this was going to be the last one.
As I waited for Dr. Manney to brief me on the surgery, I saw a girl, no older than eight, walking down the hallway past the room where I waited. She was walking slowly, a nurse by her side. She went to put a Post-It on the board where all the patients could write down what inspired us to keep moving, to be unstoppable in our various struggles for a cure. She posted it and walked away slowly. The note, written in big, child-like letters, was three words-long:
“I have to.”
Chapter Three - Springtime, Again
I pushed Ava along as we walked through the garden outside. She was seated in the wheelchair, looking around quietly as we enjoyed the spring air. After a particularly hard winter, the break was greatly appreciated. I said nothing, also, as the silence was a comfortable one, and my mind was busy with the events of the day before.
We went past a bend in the curve, and Ava slightly looked back at me.
“Kendra, dear, you’re awfully quiet.”
Broken from my train of thought, I responded. “Huh?”
“You’re quiet, dear. Is there something on your mind?”
“No,” I lied.
“Pull over here, if you would, dear,” she pointed to a nearby bench. I did so, and she pat the bench with her hand. “Join me,” she said. I obliged. She looked at me with a hint of friendly scrutiny. She had a way of knowing more than would’ve been thought, and I always had the feeling she could see right through me, if she wanted to.
“Now,” she said. “Why don’t you tell me what’s bothering you?”
+++
We were on the way back from Boston Children’s: myself, my mom, and my friend Meredith. Meredith and I sat in the backseat, and I was looking out the car window, looking at the light rain coming down. The radio was on, but the music and everything else was blocked out. The song was one I had heard before. My mind was still on the appointment from which we had just come.
Back in Boston, we had waited for some time in the waiting area before Dr. Rutherford had finished with his last patient and was ready for us. After some time of waiting, his door opened, and a boy and his mom left.
“Just remember to keep an eye on that,” he said to the mother. She nodded and thanked him before walking toward the elevator, holding her son’s hand. He sighed, stretching a bit, before he noticed the three of us.
“Ah, the Petersons.” He didn’t seem to acknowledge Meredith. He smiled at Mom before nodding to me. “You ready?”
We both moved to get up, but he held up his hand. “Just Kendra, this time, Lisa. If that’s okay.”
Mom seemed a little confused by that, but she smiled wanly as she sat down. “Sure.” She looked at me. “I’ll be here when you get back.”
I smiled at her before walking into the office with the middle-aged doctor. He closed the door behind us and moved around his desk to sit down. I sat down in front of the desk, taking in the numerous degrees on the walls, the book shelves with their medical tomes, and the occasional model and knickknack here and there.
He looked at me quizzically, almost studying me.
“How are you feeling today?”
I shrugged. “Not much different.”
He nodded, his beard quivering as he did so. He reached for a manila folder on the desk, flipped it open, and clicked his pen before scribbling.
“So, no changes? Not better, not worse?”
I shook my head. “No.”
He sighed, putting the folder and his glasses down on the desk. “That’s interesting to hear, Kendra.”
“’Interesting?’”
He nodded, standing up and walking toward the window. “Yes, quite.”
I was confused. “How?”
“Well, you see, nothing really seems to help. It’s been a handful of diagnoses, a handful of treatments, and still – nothing.”
I wasn’t quite following his train of thought. “I don’t understand.”
“Why do you think that is, Kendra?”
“I’m not a doctor. I don’t know.”
That struck him as amusing, and he laughed slightly. “Yes, well, fortunately for both of us, I am. And, the curious thing is that, despite all of our work, all of our efforts, nothing seems to help.”
“So?”
“I suppose you think it’s a matter of finding the right cure?”
I nodded. “Yes.”
“See, the thing of the matter is that we know the cure for everything with which you’ve been diagnosed.”
“And not all of them were right the first time.”
“True,” he conceded. “But, we’ve basically hit the end of the road, here, Kendra. I am not sure, given your seemingly stable position, what more there is to do.”
“Stable, but still bad.”
“How so?”
I was taken aback. Why did he think I was here? “Because, I’m still in pain. All day, every day.”
“Hmm hmm,” he said. “Do you exercise regularly?”
“When I can.”
“And you… use the restroom regularly?”
His tone indicated incredulity, almost disbelief. “Yes, when I have to.”
“Is it that time of the month for you?”
This one was ridiculous. “All month?”
He sat back down and pulled his chair in. “And the abdominal pain is—”
“Constant. Every day. No change from the last time.”
He must’ve sensed my frustration, for his eyebrows slanted downward, annoyed.
“Before you get mad at me, Kendra, know that I’m not exactly appreciating the attitude.”
“You’re basically saying you don’t believe me.”
“That’s right. Because, there’s no way you shouldn’t be getting any better.”
“The treatments haven’t worked.”
“They’re what work with the diagnosis.”
“Then, the diagnosis is wrong.”
He shook his head, angry. “No, Kendra, this is a world-class children’s hospital. I’ve been practicing pediatric gastroenterology for over twenty-five years. And I don’t think there’s anything wrong with you.”
“Excuse me?” I said, shocked.
“You heard me correctly. If you were actually experiencing what you say you are, then, the treatments would’ve at least had some effect, one way or another. Because of that—”
“Dr. Rutherford,” I began. “Do you actually think I’d fake this?”
“Because of that,” he continued. “I’m going to recommend you to a therapist.”
“A what?”
He started writing on a slip of paper. “A therapist, because I don’t know why you’d be imaging these symptoms, as that isn’t my field. Her name is Dr. Vanessa, she’s a very nice lady—”
“Dr. Rutherford, I don’t need a therapist.”
He looked at me blankly. “That’s my recommendation. There’s nothing more I can do for you.” He handed me the paper.
I looked at the paper, unsure of how to react. He stood up, walked to the door, and opened it. “I wish you the best, Kendra. I really do.”
His last words rung in my head, and I had crumpled the paper in my hand, after folding it, unfolding it, and refolding it numerous times. My mind was preoccupied on this still when Meredith tapped my arm. I looked up.
“Hmm?” I said.
“Are you alright?” she asked. I had appreciated her coming as moral support, as she understood how long I had been fighting this, and neither her nor Mom knew how to react to the latest turn of events. It was a mixture of emotions for me, personally: anger, despair, apathy. I mean, when something happens to you that almost seems surreal, you’re not even sure how to feel, nonetheless react. Call it shell shock.
I nodded, smiling meekly. “Yeah, I’m okay.”
She looked concerned but smiled when I did. “Okay, good.” I noticed she had her phone open to a text conversation she was having. When she saw me looking at it, she quickly put it in her pocket.
“What’s that?” I asked, pointing.
“Nothing,” she shook her head. “Nothing to worry yourself about.”
“No, tell me.”
She sighed. “Someone from math.”
“Yeah?”
“She overheard Natalie talking about you in math.”
“About me?”
“Yeah.”
“What about?”
“Well, just… that it was weird that you were always gone from school.”
I laughed, despite myself. “Okay? So?”
“She said… you were faking it.”
My laughter was immediately forgotten. “What?”
I had her give me her phone and read the texts myself. Sure enough, a former friend of mine had been saying that I was faking just to get out of school.
How someone fakes going to the hospital is beyond me.
++
Ava, a former nurse herself, pat my hand softly after I finished telling her. Her eyes were soft, empathetic. “Not great drama to be dealing with right after that appointment, huh?”
I shook my head, smiling sadly. “Yeah, not exactly.”
“Timely, though.”
I grinned. “Very.”
I stood up, and she continued as we resumed our walk.
“Well, this is by no means affected by you being the best aide who works here,” she began, to which I laughed. “But, I believe you.”
“You do?”
“Indeed. I was a nurse for thirty years, as you know, and sometimes there were people who pretended an ailment. Something small, sometimes bigger. But not like this. Not when you’ve been fighting it for so long.”
“No?”
“Dear,” she said. “Most people can’t commit to one television channel. How do you imagine they can commit to an illness for several years?”
We continued our walk in silence. I felt the warmth of the day. And I smiled.
We went past a bend in the curve, and Ava slightly looked back at me.
“Kendra, dear, you’re awfully quiet.”
Broken from my train of thought, I responded. “Huh?”
“You’re quiet, dear. Is there something on your mind?”
“No,” I lied.
“Pull over here, if you would, dear,” she pointed to a nearby bench. I did so, and she pat the bench with her hand. “Join me,” she said. I obliged. She looked at me with a hint of friendly scrutiny. She had a way of knowing more than would’ve been thought, and I always had the feeling she could see right through me, if she wanted to.
“Now,” she said. “Why don’t you tell me what’s bothering you?”
+++
We were on the way back from Boston Children’s: myself, my mom, and my friend Meredith. Meredith and I sat in the backseat, and I was looking out the car window, looking at the light rain coming down. The radio was on, but the music and everything else was blocked out. The song was one I had heard before. My mind was still on the appointment from which we had just come.
Back in Boston, we had waited for some time in the waiting area before Dr. Rutherford had finished with his last patient and was ready for us. After some time of waiting, his door opened, and a boy and his mom left.
“Just remember to keep an eye on that,” he said to the mother. She nodded and thanked him before walking toward the elevator, holding her son’s hand. He sighed, stretching a bit, before he noticed the three of us.
“Ah, the Petersons.” He didn’t seem to acknowledge Meredith. He smiled at Mom before nodding to me. “You ready?”
We both moved to get up, but he held up his hand. “Just Kendra, this time, Lisa. If that’s okay.”
Mom seemed a little confused by that, but she smiled wanly as she sat down. “Sure.” She looked at me. “I’ll be here when you get back.”
I smiled at her before walking into the office with the middle-aged doctor. He closed the door behind us and moved around his desk to sit down. I sat down in front of the desk, taking in the numerous degrees on the walls, the book shelves with their medical tomes, and the occasional model and knickknack here and there.
He looked at me quizzically, almost studying me.
“How are you feeling today?”
I shrugged. “Not much different.”
He nodded, his beard quivering as he did so. He reached for a manila folder on the desk, flipped it open, and clicked his pen before scribbling.
“So, no changes? Not better, not worse?”
I shook my head. “No.”
He sighed, putting the folder and his glasses down on the desk. “That’s interesting to hear, Kendra.”
“’Interesting?’”
He nodded, standing up and walking toward the window. “Yes, quite.”
I was confused. “How?”
“Well, you see, nothing really seems to help. It’s been a handful of diagnoses, a handful of treatments, and still – nothing.”
I wasn’t quite following his train of thought. “I don’t understand.”
“Why do you think that is, Kendra?”
“I’m not a doctor. I don’t know.”
That struck him as amusing, and he laughed slightly. “Yes, well, fortunately for both of us, I am. And, the curious thing is that, despite all of our work, all of our efforts, nothing seems to help.”
“So?”
“I suppose you think it’s a matter of finding the right cure?”
I nodded. “Yes.”
“See, the thing of the matter is that we know the cure for everything with which you’ve been diagnosed.”
“And not all of them were right the first time.”
“True,” he conceded. “But, we’ve basically hit the end of the road, here, Kendra. I am not sure, given your seemingly stable position, what more there is to do.”
“Stable, but still bad.”
“How so?”
I was taken aback. Why did he think I was here? “Because, I’m still in pain. All day, every day.”
“Hmm hmm,” he said. “Do you exercise regularly?”
“When I can.”
“And you… use the restroom regularly?”
His tone indicated incredulity, almost disbelief. “Yes, when I have to.”
“Is it that time of the month for you?”
This one was ridiculous. “All month?”
He sat back down and pulled his chair in. “And the abdominal pain is—”
“Constant. Every day. No change from the last time.”
He must’ve sensed my frustration, for his eyebrows slanted downward, annoyed.
“Before you get mad at me, Kendra, know that I’m not exactly appreciating the attitude.”
“You’re basically saying you don’t believe me.”
“That’s right. Because, there’s no way you shouldn’t be getting any better.”
“The treatments haven’t worked.”
“They’re what work with the diagnosis.”
“Then, the diagnosis is wrong.”
He shook his head, angry. “No, Kendra, this is a world-class children’s hospital. I’ve been practicing pediatric gastroenterology for over twenty-five years. And I don’t think there’s anything wrong with you.”
“Excuse me?” I said, shocked.
“You heard me correctly. If you were actually experiencing what you say you are, then, the treatments would’ve at least had some effect, one way or another. Because of that—”
“Dr. Rutherford,” I began. “Do you actually think I’d fake this?”
“Because of that,” he continued. “I’m going to recommend you to a therapist.”
“A what?”
He started writing on a slip of paper. “A therapist, because I don’t know why you’d be imaging these symptoms, as that isn’t my field. Her name is Dr. Vanessa, she’s a very nice lady—”
“Dr. Rutherford, I don’t need a therapist.”
He looked at me blankly. “That’s my recommendation. There’s nothing more I can do for you.” He handed me the paper.
I looked at the paper, unsure of how to react. He stood up, walked to the door, and opened it. “I wish you the best, Kendra. I really do.”
His last words rung in my head, and I had crumpled the paper in my hand, after folding it, unfolding it, and refolding it numerous times. My mind was preoccupied on this still when Meredith tapped my arm. I looked up.
“Hmm?” I said.
“Are you alright?” she asked. I had appreciated her coming as moral support, as she understood how long I had been fighting this, and neither her nor Mom knew how to react to the latest turn of events. It was a mixture of emotions for me, personally: anger, despair, apathy. I mean, when something happens to you that almost seems surreal, you’re not even sure how to feel, nonetheless react. Call it shell shock.
I nodded, smiling meekly. “Yeah, I’m okay.”
She looked concerned but smiled when I did. “Okay, good.” I noticed she had her phone open to a text conversation she was having. When she saw me looking at it, she quickly put it in her pocket.
“What’s that?” I asked, pointing.
“Nothing,” she shook her head. “Nothing to worry yourself about.”
“No, tell me.”
She sighed. “Someone from math.”
“Yeah?”
“She overheard Natalie talking about you in math.”
“About me?”
“Yeah.”
“What about?”
“Well, just… that it was weird that you were always gone from school.”
I laughed, despite myself. “Okay? So?”
“She said… you were faking it.”
My laughter was immediately forgotten. “What?”
I had her give me her phone and read the texts myself. Sure enough, a former friend of mine had been saying that I was faking just to get out of school.
How someone fakes going to the hospital is beyond me.
++
Ava, a former nurse herself, pat my hand softly after I finished telling her. Her eyes were soft, empathetic. “Not great drama to be dealing with right after that appointment, huh?”
I shook my head, smiling sadly. “Yeah, not exactly.”
“Timely, though.”
I grinned. “Very.”
I stood up, and she continued as we resumed our walk.
“Well, this is by no means affected by you being the best aide who works here,” she began, to which I laughed. “But, I believe you.”
“You do?”
“Indeed. I was a nurse for thirty years, as you know, and sometimes there were people who pretended an ailment. Something small, sometimes bigger. But not like this. Not when you’ve been fighting it for so long.”
“No?”
“Dear,” she said. “Most people can’t commit to one television channel. How do you imagine they can commit to an illness for several years?”
We continued our walk in silence. I felt the warmth of the day. And I smiled.