Our English medical term “diagnosis” originates from the Greek term “diagignoskein,” to know apart, to think through, with wisdom enough to discern an illness apart from its symptoms, or so it was in 360 to 470 BC, in the days of Hippocrates.
When I began working in the healthcare field in 1991, I did so with enthusiasm and a sense of trust. But then one of my children became ill and I realized how silly I was. A mother usually knows what to do when her child is in pain, has a fever, or has the flu. But when our motherly instincts and at-home remedies have been exhausted, we somehow think taking our child to the doctor will work. Sometimes it doesn’t.
In 1994, when Matthew, my second child and the first of my three sons, was just seven years old, he began having symptoms that were difficult for me to explain to his physicians. But I tried. About every three weeks, Matthew was sick for two to three days at a time. During these days, he could not keep even clear liquids down, he vomited as often as every 20 minutes, and lay nearly comatose for hours on the sofa when he wasn’t trying to get to the bathroom to puke. When he was trying to get to the bathroom, he walked like an old man, his chest and head bent over his abdomen, struggling to maintain even a slow and shuffling gait. He stretched his right arm behind his back, holding his hand steadily in place as if to keep something on the inside from falling out. He stayed in the bathroom for 10 to 15 minutes at a time, often producing nothing but dry heaves. Then, he’d return from whence he came and slowly recoil his twisted body back inside our fluffy brown tweed sofa, the softest bed in the house. I tried so many times to palpate his abdomen, back, or side, just to see if I could find an obvious trigger point for his pain but the second I touched him he quietly pleaded, “No, Mom, don’t.”
During the time of his illness, I was employed as an administrative assistant in one of the local family practice offices, so this is where I began my inquiries. During one of Matthew’s spells, I took him in to see one of the younger physicians, hoping he was more up to date on new developments, new techniques, new treatments for complicated things. I remember taking in a sample of Matthew’s vomit, just yellow bile really, securely wrapped in a ZipLock bag. I thought maybe there was a lab test that could reveal abnormal levels of something, because it seemed to me that my son’s body was somehow producing it’s own poison. “No, we don’t need that,” he explained. I wasn’t embarrassed. I felt worse than that. I felt dismissed. Silly Mom. That young physician then sent us on to a seasoned gastroenterologist who ordered a few standard tests. I wasn’t impressed by him.
I was impressed by my son, a sick, young boy, obedient and kind when asked to drink a disgusting chalk-like Barium milkshake in preparation for his upper GI study. This wasn’t Steak-n-Shake and never once did Matthew complain. These results, along with an abdominal ultrasound, were negative, so the problem wasn’t with his digestive tract. But the gastroenterologist didn’t send us anywhere else. I felt dismissed. Again.
My thought process went something like this, “So if there’s not a problem with his digestive tract, maybe we should look somewhere else, you think?” It seemed to me when Matthew pulled his right arm back behind his side, that he was reaching for or even cupping his right kidney. I never believed the human body is all that complicated. My favorite book when I was Matthew’s age was one of those 9-1/2 x 12 inch hardback anatomy books for kids, where each system of the body is illustrated on a different color of cellophane. I spent hours as a child lying on the living room floor, layering each cellophane page on top of the other, mesmerized by the visualization, each system synchronized with the next, an entire universe contained within our skin. Studying that human body book as a child, I never believed I was reading any great mystery. Was I asking too much of Matthew’s physicians? All I wanted was for one of them to actually give a shit, to point out to me on one of those cellophane pages exactly where Matthew’s pain was coming from, why, and what needed to be done.
After the gastroenterologist discussed with me what he couldn’t find, I thought it might help if I mentioned a few more details. Did he think I was insane? What could a 31-year-old mother-of-four know anyway? I tried to have a say, but I guess I just wasn’t loud enough or rude enough. Instead, I was trying to be nice when I explained, “Sometimes, after he has been on the sofa a few hours, he turns over, switching sides from left to right, then about 30 minutes later he has to pee, and then when he pees, he pees for like five minutes. I mean, he just pees and pees and pees. Could this have anything to do with his pain?”
“Maybe,” the gastroenterologist said, then – nothing. He turned the discussion back to Matthew’s abdomen, throwing these symptoms under an umbrella diagnosis. Except umbrella diagnoses are not real diagnoses at all. He used bigger words, but this is what I heard, “Well, we’ve ruled out this, and we’ve ruled out that, so this is what I’ve got left – I think he’s having abdominal migraines.”
I thought, “Okay, Doc, nice cop out. No, actually, not even a nice cop out, just a lazy one.”
It was difficult for me to see my son laughing and playing, loud, boisterous even, and then suddenly, without warning, completely shutting down, collapsing, deflating like a balloon when it’s losing helium. I thought back often to his birth day and then to his infant and toddler years. He was born long before physicians blurted out the baby’s gender on a four-month ultrasound. My water broke three weeks before his due date. During labor, as his shoulders passed one by one through my vaginal canal, I knew I was giving birth to a boy, wide-shouldered and strong, with the episiotomy to follow causing more pain than his delivery. But that beautiful boy with his thick pouty lips was worth every stitch.
Matthew’s demeanor, even as a newborn, was pretty calm, mellow even. He rarely cried. I really only remember one rough night with him when he was about five days old. He just cried and cried and cried. He wasn’t hungry. He wasn’t wet. Maybe I was just too busy. Too busy keeping the house clean. Too busy entertaining Jessica, his 20-month-old sister. Too busy nursing him and changing his diaper. Too busy to just hold him. I finally picked him up out of his crib about 2:00 a.m., because my two previous attempts to calm him down were literally, utterly, unsuccessful. I carried him gently downstairs and sat with him in that chintzy, $89.00 honey-oak-stained Bentwood rocker, the most unsnuggly rocker in history. But I tried to snuggle him close anyway, his head propped up on my right shoulder so I could whisper in his ear, “I’m so sorry, Buddy, Mommy’s just been too, too busy. I’m so glad you’re finally here. I waited so long to see your face and hold you in my arms. You’re such a good boy, so handsome, and strong.” I don’t think I made it through the second sentence before he quieted and listened and listened and listened as I continued to whisper, to talk only to him, for probably the first time in his life.
As an early toddler, he liked to crawl under our clunky 80’s wooden coffee table, roll onto his back, position his feet flat to the top, then push, lifting both wooden legs at one end of the coffee table about five inches off the floor. Some pretty serious leg presses for a 12-month-old. On his second birthday, as I was getting him ready for bed, I had a little talk with him. “So, now you are two! You are such a big boy! And mommy is having another baby soon, so I’m going to need your help. I think you are big enough to start wearing big-boy panties. Joshua is still a baby so he can’t do that yet. But I can’t have three of my kids in diapers, that is too much work for mommy and that would just cost too much money! I think you are big enough to quit wearing diapers. Besides, they get wet and stinky and that’s not fun!” That child never wore a diaper again. He certainly didn’t talk back because he really didn’t start talking until he was three. But he understood every word I said. After his second birthday, I only remember him having one night-time accident when he was about four. He was sick, I think with the flu, and running a fever, so I kept pushing fluids down him. That one night-time accident was actually my fault! Seeing him in pain at eight made it difficult for me to believe I was a good mom. My instincts were so much sharper when he was small.
Dr. Burnt-Out-on-His-Job prescribed Imitrex for Matthew’s “abdominal migraines.” But he wasn’t trying to sell medication, he was selling a theory and I wasn’t buying it. I think he was waiting for me to say “Thank you,” but I didn’t. He just kept talking to me, “With your history of migraines, blah, blah, blah, as he gets older, this pain will most likely transition to a more typical migraine.”
I was thinking, “So, you really don’t know what the hell you are talking about, do you?” His explanations sounded like the 37th replay of The Little Mermaid. At one point in the conversation, I just quit listening. I didn’t believe my history of migraine headaches had anything to do with Matthew’s recurring pain. My migraines were triggered by my menstrual cycle and Matthew didn’t have any ovaries. Besides, I personally was a participant in an Imitrex study just a couple years earlier and I certainly didn’t believe this was a medication an eight-year-old should be taking. I felt defeated. Where was my Hippocrates?
Another year passed, then another, and another. I Googled a hundred variations of “pediatrics, nausea, vomiting, dry heaves, yellow bile, back pain, weakness, lethargy, abdominal migraines, routine vomiting, vomiting every three weeks, recurrent vomiting, incorrect diagnosis,” and on and on and on. The only comparable illness I found was something called “cyclic vomiting syndrome,” which, like abdominal migraines, is not really a diagnosis at all. The most popular website focusing on this disorder included hundreds of parents who asked all the same questions but found no answers.
Matthew’s sick days were normal to him, normal to his friends and siblings, but they were never normal to me. If it had been me, I don’t know that I could have lived through it. The only things I could offer him were a cold washcloth, which he kindly accepted then brushed aside when I wasn’t looking, and a bottomless glass of Sprite with heavy ice, kidding myself, “He might be able to keep it down this time.”
When he was ill, he seemed to crawl inside himself, like he crawled into that sofa, an attempted disappearing act, but I couldn’t take my eyes off him. When he was well, his laughter filled the room, deep from the gut, loud. He did all the normal things normal boys do. When he was in third grade, he was on TV, line dancing with his class to The Electric Slide. For Halloween that year, he dressed up as a magician. I made him a silk black cape with sparkling silver crescent moons and stars, a six-foot scarf scrunched up his sleeve, a rabbit or something under his hat. He played soccer and baseball, never the best because Matthew wasn’t raised by parents like that, but unless he was sick, he never missed a practice. In fourth grade, he played Alfred Hitchcock after his creative writing group wrote a skit. He loved the Three Stooges, Charlie Chaplin, and The Big Ear Boy. Oh, and aliens. Always aliens. He saw every documentary he could find on Area 51 and built a UFO. He won third place in the fifth grade science fair for his presentation on black holes, researched entirely on his own.
In seventh grade, he joined the Chess Club, his favorite extracurricular activity, where he developed friendships he still has today. He was never really a nerd, though. I remember one summer he and a couple buddies were playing around with some songs, writing parodies about crushes they had on each other’s moms. And when the group was getting a little ornery, Matthew was always the good kid. One evening, when his younger brother, Joshua, and one of their friends, Brian, snuck out at night to throw water balloons around town, Matthew didn’t go. He did, however, help them back in the house by putting a chair outside below their bedroom window so they could climb back in. In eighth grade, for the Georgetown Fair Talent Show, he wore an Hawaiian shirt with a dime store lei and sang the Beach Boys’ Kokomo. In band, he played the trombone. His cancer-stricken, dying band teacher loved him, wanted him to keep playing then go to college on a scholarship.
At sixteen, he traded in his trombone for a guitar and a girlfriend. About that same time, I told him he had to start detasseling corn so he would never work a harder job in his life. He pulled his two younger brothers along so they could all pitch in on video game equipment. When the younger two earned enough money for the purchase, they quit. Matthew kept going. He played a cook in the mess hall for a M.A.S.H. play. He was moved into Honors English where he made the valedictorian a little nervous. Matthew said the valedictorian would ask him after every assignment,“Wait! What just happened here? You’re not allowed to write better than me! How did you do that?”
When he was a senior in high school, he fell in love with an older girl he met at work. At 18 and six months before he graduated high school, he married Lidiya, a beautiful, outgoing, and determined 21-year-old from the Ukraine. And she wasn’t even pregnant. He just didn’t want her to leave the country. She already had a bachelor’s degree and spoke three languages, so why she was only able to obtain a temporary work visa for McDonald’s, I’ll never know. The only real concern I had at the time was that she didn’t seem very impressed with Matthew’s interest in his high school theatrical productions, making some statement like, “In the Ukraine, most classmates laugh at guys who like to sing and dance, everybody calls them gay, but I know he enjoys it, so it’s okay.” I shrugged this off as a cultural difference because other than this, she was pretty amazing, an instant hit with the family.
Lidiya loved to play Scrabble with us. When it comes to this game, my children are vicious. Because, well, they learned from the best. When my stepfather taught me how to play when I was in sixth grade, he was merciless. And this is how I taught my children to play just as soon as they started reading. I never let them win, ever, until they actually did. My boys were never the quarter back or defensive line types but different games can teach children similar things: It’s not over until it’s over. Hang in there. Don’t get lazy because you’re losing. Don’t get lazy because you’re winning. Celebrate your opponent’s brilliant moves. Don’t be obnoxious with your victories. And never cheat, not even when no one is looking, because you’ll always know the truth.
Lidiya never seemed more at home in the United States than when she was sitting at our oversized kitchen pub table playing Scrabble engaged as the rest of us. We allowed her to use Russian, German, and Polish words so we could learn new words from her, too. And even though I always allowed a dictionary at the table to encourage learning, I don’t recall her ever needing to check a spelling. When I purchased a Scrabble board for her at Christmastime, she cried. But more importantly, when Matthew was sick, she took care of him, she cried for him, and she comforted him. Instead of me. I loved her to death but it’s hard for a mother to turn the care of a sick child over to someone else, especially another woman. I knew he was in good hands, but they weren’t mine. And Matthew’s symptoms just kept getting worse.
By the time he was 20, Matthew’s vomiting episodes crept closer and closer together and the severity of his pain increased. The newlyweds were in the emergency room every two weeks, for months. One physician finally gave Matthew a standing order for Demerol as needed because it was the only medication that offered him any pain relief. Finally though, Lidiya said, “Enough.” And she found the voice I could never seem to find, loud and strong, advocating for my son. During just another ordinary visit to the ER, she told Matthew, “We are not leaving this hospital until we find out what’s wrong with you. Between his adamant wife and a new insightful resident on call, some progress was finally made. After studying Matthew’s paper chart in a time when so many physicians were still handwriting notes, the young resident finally said, “You know, I don’t think it’s abdominal pain. I think we should look at his kidneys.” The same instinct I felt when my son was eight.
The resident immediately ordered an intravenous pyelogram (IVP) with contrast. This test is performed by injecting a contrast dye into the urinary tract then studying images to detect any dysfunction in the patient’s kidneys, ureters, and bladder. The test revealed Matthew’s right kidney was inflamed and his right ureter was blocked, specifically in a state of reflux, backwashing urine into his kidney instead of flowing correctly towards his bladder. On repositioning, Matthew was asked to switch sides, moving from his left side to right, the same sequence he performed on the sofa when he was small. This set of imaging revealed his right kidney beginning to drain, though inefficiently.
After the pyelogram, Matthew was finally consulted by a nephrologist, a kidney specialist, who then performed an immediate procedure to clear his right ureter laparoscopically but no clear pathway could be made. His ureteral tissue was so mangled that an attempt to tunnel through the blockage was unsuccessful. As is common practice with most diagnoses, treatment plans progress as conservatively as possible but what came next was pretty extreme.
Matthew underwent a right nephrostomy, meaning they cut a hole into his right kidney, inserting a tube which they left hanging outside of his body, taping it down over his hip and onto his outer thigh where they hung a urostomy pouch, allowing his urine to bypass his ureter completely, draining down his leg into a baggie. Not real sexy. He was instructed to continue with this drainage technique 24 hours a day, 7 days a week. Recommended tincture of time – six months. Hoping this extended length of time would allow his right ureter to rest, to heal, to untangle itself, to open just enough that his next laparoscopic procedure might prove to be successful. It wasn’t. In fact, his first laparoscopic procedure produced such a large amount of scar tissue that his condition was only made worse. When Matthew learned of this, he said, “Enough! I want my right kidney removed. Just take it out. It’s only functioning at thirty percent anyway. Lots of people live a normal life with just one kidney. And that’s what I want – a normal life. Not a year from now, not a month from now, today.”
Though his nephrologist advised against it, Matthew persisted. He was finally given a referral to Mayo Clinic in Rochester, Minnesota, where Matthew’s request for a right nephrectomy, a right kidney removal, was granted. Matthew said he woke up from that procedure completely pain free, a feeling he had not experienced since he was in Kindergarten. He was given all the normal living-with-a-single-kidney precautions, such as avoiding contact sports, drinking too much alcohol, keeping an eye on his blood pressure, drinking fewer carbonated beverages, and drinking a lot more water. Matthew was like, “Yeah, yeah, yeah, whatever, can I just get out of here?” Because he had a life to start living.
It’s been 12 years since his surgery, but I still worry. After every visit or phone call, he answers all the same questions depending on what band wagon he has fallen off of or hopped back onto at any given time, updating me correctly whether he’s eating healthy or not, exercising or not, drinking too much alcohol or not, smoking or not. And as much as I try not to nag, I just can’t help myself. I always leave him with the same reminder, “You only have one kidney!” Just in case he forgets.
During a recent conversation with him over dinner, we reflected a bit on his illness. I found myself apologizing for not being more adamant with the physicians when he was younger. He stopped me and wouldn’t let me finish. He said he wouldn’t change a thing about his childhood because that illness taught him so much about life and relationships most people never learn – patience, empathy, respect, his words most convincing when he said, “I never wanted my friends and family to quit having a good time just because I was sick.” He has such a resilient spirit and I believe one line from his own song lyrics describes his attitude best, “This could be the day that everything changes.”
It would be lovely, I suppose, if I could end this story on that note, to say he’s living happily ever after. Maybe in some ways he is, but he’s no longer with Lidiya. Just one month after receiving her green card, just after their fifth wedding anniversary, she left him for James, Matthew’s best friend and business partner for a charter bus company they were planning to launch together. It wasn’t supposed to happen to him – that young Russian bride cliché. But Matthew’s okay. Of course, for months, for two or three years even, he wasn’t. Then he began pouring his heartbreak into song. Healing. On hearing a few of his new tunes, his younger brother, Joshua, started playing talent scout, dragging Matthew to Cowboy Monkey downtown on Tuesday nights for open mic at the bar where Matthew became a rock star.
One Tuesday evening, several months after Matthew began performing on stage, Lidiya and James arrived at Cowboy Monkey and claimed a table. Champaign, Illinois is a small town. Did their ears perk up once word got around? Or did they just pop in on Matthew and his groupies by accident? Were they hoping to hang out with him after the show, catch up a little, maybe clink drinks? I don’t want to believe there was any ill intent on their part. I don’t want to believe that Lidiya even thinks like that. But I do know Matthew walked up to them, guitar in hand, raised both eyebrows a bit, which always means he’s serious, and said, “I think you both need to leave.” He hasn’t seen them since.
He’s been driving a semi trailer for a over a year now, traveling across the country, at home with his autonomy, writing songs, his guitar playing the ever faithful lover. He’s living mortgage free and pretty comfy, his cab complete with a bunk, video games, and a flatscreen TV. He’s investing in his future. “Because,” he explains, “If I can do this for five years or so, I can just pay cash for a home, out West I think, on a few acres of land. Just gettin’ my ducks in row. Who knows? I might just meet the right girl somewhere down the road. Lidiya and I were just too young, that’s all. I’m taking it slow.” I’m glad he’s not in a hurry, thrilled when he pops in for a surprise one-on-one visit with me when he’s not far from town. We stay up into the wee hours of the morning laughing out loud over a Scrabble board. He never keeps score and lets me win. Again. But I taught him to be a better player than that and the fact that he lets me win without a real fight kinda pisses me off. But I keep my mouth shut. I’m just glad he’s home.