I couldn’t describe the feeling, and it frustrated me. After all, I was only a preschooler, and my vocabulary was pretty limited. But, something was off, and even without the words to pinpoint the problem, I knew it was there.

I could only describe it as “weird.” My foot simply felt “weird.” So, Mom and Dad took me to the doctor: A man in a white coat to whom I also told, simply, “My foot feels weird.”

Well, “weird” turned out to be numbness, which then turned out to be limited dorsal myeloschisis (LDM), a rare spinal dysraphism that results in a “tethered cord,” or a fibro-neural stalk that connects someone’s spinal cord to a piece of skin in their back. While the true incidence of LDM is unknown, the number of people who have spinal dysraphisms in the United States is about 1 in every 1,000 live births; this number is even smaller for those with LDM.

I was also diagnosed with syringomyelia, a neurological defect that populates syrinxes (or cysts filled with spinal fluid) in one’s back, which expand and damage the nerve fibers that carry information from body to brain. Its incidence rate is even smaller: About 3 to 8 in 100,000 live births. If not immediately addressed, I risked permanent paralysis.

To correct the feeling and make me better, my parents agreed to a 10-hour lumbar spine surgery in 2008. That was nearly 17 years ago.

Today, I’m 21, and when I reflect on that time in my life — the surgery, the close-bodied MRIs that followed the procedure, the yearly neurological check-ins, the anesthesia, the “weird” — I see my childhood play out in flashes. The day of my surgery, a small hamster toy sat in the hospital gift shop. Medicine shot through my veins as a gown was placed over my head. “Curious George” played on a square television screen in my recovery room. Dad talked to another man in a white coat.

The day of my first MRI, or machine resonance imaging, a circular machine thumped in a sterile room, droning like a massive spaceship — colossal and loud and rude. An anesthesiologist asked me what my favorite place to vacation is. A rubbery gas mask graced the surfaces of my nose and mouth. The familiar, sour Sharpie scent of the drug poured through my nostrils as a slipping feeling washed over, like lights shutting out. Bed wheels rolled along a cold tiled floor. It was over.

This image was taken Christmas Day in 2008. (Photo courtesy/Maria Zara)

The details of my conditions, the timeline of operations and the limitations placed on what I could and couldn’t do — everything was blurred and fuzzy. My surgery was an intangible piece of identity locked and stored away, only to slip through the cracks every once and awhile in nightmares: Hands ached from IV ports, back throbbed from sitting down for too long, follow-up MRIs whirred alive to swallow me whole.

I’ve had a “weird” six-inch scar for as long as I can remember. The lesion runs down the length of my lower back in a line of raised scar tissue and silky pink skin. I see the anomaly every time I turn around in the mirror. But, what happened to the doctor who gave that scar to me? How can I thank him for saving my life? And do other former patients hospitalized at an early age experience the same side effects?

This August, I finally asked my mother for my doctor’s name. In return, she asked in surprise, “Why?”

I replied, almost as simply as I had long ago to describe the weirdness, “I want to find him.”

I tracked down the doctor who operated on me 17 years ago. Here’s who I met along the way.

After a Google search and a call to the Oakland Medical Center (where I had my surgery) I confirmed that my doctor had been the chief of pediatric neurosurgery at the University of California, Davis. I emailed the UC Davis pediatric neurosurgery department, and a member said that Dr. Marike Zwienenberg would be my best bet at finding him. So, I gave her a call.

Dr. Zwienenberg is a clinical professor of neurological surgery. Having grown up in the Netherlands, Dr. Zwienenberg moved to the U.S. to pursue research during medical school. She decided to stay in the States and completed neurosurgery residency training at UC Davis. Now affiliated with the children’s trauma program at UC Davis Children’s Hospital, Dr. Zwienenberg specializes in procedures for children who have undergone traumatic brain injuries, while also treating patients with epilepsy and other spinal dysraphisms. She also happened to be my doctor’s mentee around 2003, the year I was born.

“[Your doctor] inspired me to pursue a career in pediatric neurosurgery,” Dr. Zwienenberg said over the phone.

Dr. Zwienenberg said my doctor had an extensive understanding of congenital pathology, or disorders that impact children at birth, and worked to teach her about those disorders. “We spent endless hours after surgery, and he would explain things,” she said. “He would write it down on little napkins. I don't have them anymore, but I used to carry them.”

I don’t have notes from my surgery either, but what we do share is an interest in pediatric operations.

“It's wonderful to take care of kids. Yeah, it's a very — it's a very different ballgame. I love it,” she said. “I don't even know how to explain it, but you're very invested, and you know that you'll be invested for a long time.”

Dr. Zwienenberg hasn’t been in contact with my doctor in years, but she was just in Europe. She guessed he might have moved there.

Dr. Marci Jones didn’t know where my doctor was, either. But, she’s the mother of a friend, and she happened to be in Los Angeles for Trojan Family Weekend at the University of Southern California. She lives with her family in Worcester, Massachusetts, where she’s an orthopedic surgeon at the University of Massachusetts Memorial Medical Center. She agreed that there’s a privilege in forging long term relationships with her patients, because she was a patient herself.

Dr. Jones was born with developmental dysplasia of the hip, a congenital condition where the ball-and-socket hip joint develops incorrectly. She had three surgeries starting when she was about 18 months old, and at about 30 years old, Dr. Jones had a full hip replacement.

She doesn’t recall much from her early-life surgeries, but she still sees visions of it in flickers: “I remember a little bit. I was in traction for a while, which means I was lying in a bed with a wire through my leg, and my leg was being suspended by some ropes…I remember something about having my cast off, but I had a lot of…follow up, treatments, and therapy…That's more, really, what I remember and what helped to shape my interest in orthopedic surgery.”

Where I found fear, Dr. Jones found a career. “I don't remember a time that I didn't want to be an orthopedic surgeon,” she said, remembering the excitement she felt when her surgeon developed her x-ray.

Dr. Jones resolved to go to medical school, and she did. When she graduated from the University of Vermont College of Medicine in 1994, she decided (much like I am now) to connect with the doctor who did her surgery. He was elated when she found him.

Now, Dr. Jones hopes she can pave a path forward for some of her own patients: “I hope that, you know, in my career, I can do something like this for someone, or even if I don't, like [do] that, I just even would have the ability to change someone's life in this positive way.”

I gave her the name of my doctor before she headed off to more family weekend festivities. She sent his name to her fellow surgeons through a Facebook group.

Darren Zhou is a 20-year-old junior at USC. We were introduced through a mutual friend who interned at the Children’s Hospital of L.A. this summer. He definitely didn’t know where my doctor was, but he does know what it’s like to be afraid of his own body.

This image was taken on October 18, 2024, nearly two decades after Darren Zhou's liver transplant. (Photo courtesy/Darren Zhou)

Zhou was born a healthy baby, but at 5 months old, he began exhibiting signs of jaundice, a condition where a baby’s skin begins to yellow from the build-up of the chemical bilirubin in the bloodstream. From jaundice, he developed biliary atresia, a congenital liver disease that blocks the ducts which transport bile to the liver. Biliary atresia can lead to pediatric acute liver failure, and, in turn, death if not treated promptly. But a liver donor stepped up for Zhou after less than a month of anticipation, which can sometimes take up to five years.

“I think it was a miracle,” Zhou said over the phone. “My parents are both immigrants, and we were all just really grateful for the privilege to be able to have a donor then…In addition to battling language barriers, and because my parents are first generation. That in [and of] itself, became a huge obstacle that they were able to overcome.”

Zhou’s parents immigrated from China in 1993 and 2002, and now they live in Cherry Hill, New Jersey. At the time of his transplant surgery, his mother helped with housework and his father was a sushi chef. Neither of them finished high school, and Zhou — now a biotechnology student — has dedicated his education to them.

“I feel like I could definitely owe so much of my life to my mom, because my mom was the one that lived in the hospitals with me and was always there,” he said.

Like Dr. Jones, Zhou resolved to become a member of the patient-to-physician pipeline. Translating his parents’ love language into practice, he volunteers at L.A. General Medical Center and aids research at USC Keck Medicine’s Emamaullee Transplant Immunology Lab. There, he and his research mentors work to discover pre-markers of sick patients, helping to determine whether patients need liver transplants or if they can recover on their own.

He said that in a way, helping others heals himself. He feels most intune with his body when he’s in a hospital, saying, “Building onto that like full circle moment, I remember as a patient in those recovery rooms hearing stories as the patient, while now like I'm like working in those recovery rooms still hearing those stories, but being able to connect with them.”

He wished me luck as we ended the call: “I’ve been telling myself maybe I should reconnect [with my transplant doctor] and say thank you. I feel like this might just be the one push that I need.”

I decided that if I couldn’t find my doctor, then at least I could locate someone with my condition. Dr. Zwienenberg pointed me to the National Organization for Rare Disorders. I spent multiple weeks searching, but once I got his email, Noah Forman was — as he has been most of his life — game.

Forman is a 17-year-old economics/entrepreneurship student at Michigan State University. Growing up in Boca Raton, Florida, he always loved mixed martial arts; he has about seven years of taekwondo, three years of jiu jitsu and seven years of wrestling under his belt, and he won the MMA Orlando circuit multiple times. By the time he was nearly done with junior high, the competitive MMA fighter had no way of knowing that everything was about to change.

Around seventh grade, Forman was rushed to the hospital for viral meningitis — a bacterial infection that causes swelling of the brain and spinal cord membranes. He needed a spinal tap (an invasive procedure that draws spinal fluid from the spine with a needle), but he refused, opting to do a full-body MRI first. When he got the results back, his life flashed before him: He has syringomyelia and chiari malformation. He could’ve been paralyzed if he went through with the spinal tap.

Here he is: Another person with syringomyelia, another rarity in 100,000.

Noah Forman wears purple to spread chiari malformation awareness during his first self-founded 5k. (Photo courtesy/Noah Forman)

However, Forman has it much harder. With an incidence of 1 in 1,000, chiari malformation is a specific spinal dysraphism that causes one’s brain to push down into the spinal canal and brainstem, inducing intense headaches and weakness. Without surgery, he was forced to stop doing what he loved. “I was told I couldn’t do any of my sports, no MMA, no fighting, because that could leave me paralyzed,” he said.

Even with his conditions, Forman wanted to live by the “no pain, no gain” mentality of MMA. So, in ninth grade, he started training on his high school’s cross country team. However, he quickly learned that his body has limits. After running two half marathons back-to-back, he experienced severe flare ups for the first time.

“When you have flare ups, it, it feels like you’re dying. That’s the best thing, I can, the best thing I’ve been able to relate it to. Because it’s hard to explain…every time I have a severe flare up…it feels like my brain is about to explode out of my head, not being able to move, severe muscle weakness, shooting pains down my spine, into my nerves, into my hands, just a bunch of random stuff that no one really thinks about or experiences,” Forman said.

He likened his daily pain to the “run down” feeling of being sick, saying, “It's that, but all the time, just constantly being in a weak bodily state.”

Forman records an episode for his podcast, The Chiari Champion. (Photo courtesy/Noah Forman)

Despite his limits, he refused to let his ailments deter him. After recovering from his first flare ups, Forman went door to door in his neighborhood over the summer to fundraise for chiari/syringomyelia research, creating a 5k after pitching himself to the Bobby Jones Chiari & Syringomyelia Foundation — an organization in Staten Island, New York dedicated to the curing of chiari/syringomyelia. His 5k garnered 350 runners and $40,000 in its first year, and the year after that, that total went to $100,000. He also started a podcast called The Chiari Champion to help others with chronic pain.

It’s hard living with a rare chronic condition, but Forman believes that recovery is just as much a mental battle as it is a physical one: “The best part about having these issues is forced growth…Looking back, if I wasn't diagnosed with these two chronic illnesses when I was in seventh or eighth grade, I, I don't know if I would be in the same spot today.” He added that knowing what’s going on in his body gives him the understanding that things could always be worse. That knowledge gives him power.

Nearing 5 p.m. in Michigan, we both had to go. As we ended the call, we couldn’t help but reflect on the fact that despite its rarity, syringomyelia brought us together.

“I'm really just excited that more people are bringing some attention and awareness to this. If you have anything else that you want to add later, feel free to just shoot me a text.”

People like me and Forman, we’re members of a small community, but the number of pediatric patients isn’t. Every year, nearly 3.9 million surgeries are performed on children and adolescents in the U.S. While patients can outgrow their scars years down the line, treatment shouldn’t end when a physical scar scabs over.

Early-life hospitalization may lead to an increased risk for mental health disorders later on, according to Dr. Meghan Marsac at the University of Kentucky’s Center for Pediatric Traumatic Stress. She’s the author of “Afraid of the Doctor, Every Parent’s Guide to Preventing and Managing Medical Trauma,” a guidebook that helps parents properly care for children with chronic conditions.

“If we build in the idea that emotional health is part of physical health, and throughout every part of our medical care, we're paying attention to emotional health, we could do anticipatory guidance around things that a lot of kids have trouble with,” she said, adding that medical traumatic stress (MTS) looks different for everyone. Some children may show anxiety, like being nervous before an appointment, while others might withdraw or behave unusually around medical staff, becoming quiet or avoiding eye contact. Other kids may exhibit avoidance, such as resisting appointments or refusing medications. And while some children may constantly talk about their medical issues, others might try to avoid thinking about them altogether.

Zhou said he felt guilty about constantly being sick and needing to be cared for. “Growing up, I always felt bad, honestly, having this transplant. I always look back [to] when I was younger, and just in general, how bad I felt for my parents just to always have to be there,” he said.

Meanwhile, Forman said that every time he has a flare up, he’s transported back to seventh grade: “It feels like I'm back in the hospital with viral meningitis.”

Click on the chart for a link to the source.

“Sometimes [kids undergo] re-experiencing,” Dr. Marsac affirmed. “We’ll see things come out in dreams, or bad dreams, or nightmares, or having flashbacks or memories, like if you go back into that same room where you maybe had a really scary needle stick or something like that, your body reacts as if it's happening again.”

It’s beginning to make sense now.

Dr. Marsac said it’s important to not neglect the immediate community around the child, either: “When we talk about it [MTS], we talk about it not just in kids, but in…anyone interacting with the system.”

Dr. Rima Jubran — the designated institutional official and director of graduate medical education at Children’s Hospital of L.A. — agreed. That’s why hospitals like CHLA have embedded social workers and therapists to help anxious parents and their families navigate treatment, including patients’ siblings, who are often overlooked.

She said that some patients even have survivor guilt when the friends they made in the hospital die, adding, “I had a patient who once said, ‘I don't want to be an angel.’”

To combat medical traumatic stress, Dr. Marsac encourages parents to be intimately involved in the care process, citing the Health Care Tool Box, which educates families on trauma-informed care. These tools include having playrooms, offering non-invasive shots such as freezing spray and being extra diligent about one’s transition of care from pediatrics to adult providers.

Dr. Jubran has been an expert in the field for 25 years. Within that time, she has also found ways to make the care process a little easier, like asking mothers to carry their babies to the operating rooms or giving patients medicine before anesthesia so they don’t remember the gas mask: “It's less traumatic for them that way.”

Dr. Marsac concurred that treatment must be proactive, saying, “No child or parent is born equipped to know how to deal with [a] really hard medical condition. It takes extra skills and extra strategies to deal with it in an adaptive way.”

I never did get in touch with my doctor, but Dr. Zwienenberg helped track him down to a hospital in London. So, I sent him a letter. I’m not sure where that piece of paper will end up next. But, what I do know is that in the pursuit of my doctor, I found something more tangible than a face to the name. I found a village of former patients, people like me.

To this day, Zhou stills gets his blood drawn. Forman still gets flare ups, and even when he’s not feeling his best, the “people around [him] have no clue most of the time.”

However, being professionally diagnosed by his doctors helped him grapple with his experience. “I didn't realize other people didn't feel [what I felt] until after I was diagnosed. I thought, ‘Oh, everyone just has, you know, some level of pain, just all the time,’” he said.

Now, he hopes to raise more awareness about chiari, syringomyelia and other rare spinal dysraphisms so that other young people won’t be left wondering. By sharing his story, he helped me towards an understanding, too.

This image was taken two weeks after my surgery in 2008. (Photo courtesy/Maria Zara)

“I had no clue what my story was. I had no clue where I was going with this. Looking back, it was the five stages of grief that I was going through, and when I finally got to the 5k and the podcast, I added a sixth step,” Forman said, “and that step is helping others who are going to the same thing. Really, while helping others, I was able to understand more about myself…That was really what kept me going.”

Zhou said the same, adding that he owes his life to his doctors: “I would say to everyone who is experiencing a health condition…it's scary at first, and yes, it's going to come with a lot of problems afterwards, a lot of consequences. I think just realizing that you're alive is such an amazing thing in [and of] itself, and whether or not you want to take your experiences as inspiration or motivation, I would say, just be grateful with everything that you have, and just be grateful for all like the physicians that, physician's nurses, physician's assistants — just the healthcare industry in [and of] itself for being there and working their hardest just to like, support and help fight by your side.”

Seventeen years ago, a team of physicians fought by my side. While I was too young to know it then, I know it now. I’m grateful. The cloud has lifted, and I know who I am. I’m Julia Zara. I have LDM and syringomyelia. I had surgery when I was five. Headaches, back pain and cold hands from neuropathy (nerve damage) are part of my reality. I’m graduating this December, and I’m excited for what the world has in store for me.

It takes time, but the cloud has lifted for others, too. Dr. Marci Jones has developmental dysplasia of the hip. She had multiple surgeries and a hip replacement. She can’t quite sit criss-cross applesauce. She has a husband and a son. She works 50 to 60 hours a week healing patients. She’s been distinguished as one of Castle Connolly’s Exceptional Women in Medicine every year since 2019.

Darren Zhou has a liver transplant. He had catheter drains in eighth grade and his junior year of high school. He spends four hours a week volunteering in recovery rooms. He’s the son of immigrant parents. He’s going to be a transplant doctor one day.

Noah Forman has chiari malformation and syringomyelia. He had viral meningitis around the seventh grade. He raised funds to research his rare conditions. He’s a third generation Spartan at MSU. He’s going to be an entrepreneur one day, and he might go into either politics or higher education. He’s still deciding, but he’s got time.

Dr. Jones, Zhou and Forman all have visible scars. Lift up a shirt or put them under an x-ray, and you’ll see them. But, there’s an invisible string that links former patients to one another and to physicians like Dr. Zwienenberg, Dr. Marsac and Dr. Jubran. This string keeps them steadfast in recovery rooms. It makes the weirdness more or less bearable.

This was my second MRI. It was on November 8, 2013. (Photo courtesy/Jojet Zara)

In my dreams, I still see that sterile room, but at least I know it’s been cleaned for me. I still scrunch my nose when I catch a whiff of Sharpie, but now I know it’s only a marker, not the drug. I still close my eyes when a needle digs into my skin, but I know I’ll blink them open again and try to wipe the tears away. And, if I’m too weak to do it myself, then I know my mother will take her hands to my eyes, gently tapping the ends of my fluttering eyelashes. My father will hug me in his warm arms because I’m shivering from my medical gown. My brother will say something to make me laugh because I’m feeling a little sleepy. When my tears have dried, I’ll know it’s over. It’s been over for 17 years.

The feeling comes and goes from time to time, but something new stays steady.

I didn’t find my doctor, but I found a community. I found peace.