Memoir

Life Inside a Digital World for Chronically Ill Teens

As a bedridden kid, Starbright World became my lifeline. And it's where I met the best friend who would change my life IRL.

Life Inside a Digital World for Chronically Ill Teens

A week before Christmas in 1999, two cheery Child Life Specialists wearing smiles and ID badges knocked on my hospital room door.

“Hi! I’m Karen! Check this out,” said the enthusiastic Shelly Long doppelganger, as they wheeled in a large computer station with a webcam and a bright, colorful sticker that read: Starbright World.”

My neighbor, a nine-year-old girl named Kayla, poked her head into my room. “It’s awesome!” she shouted, motioning to the computer before riding off on her IV pole like a scooter into the sunset.

Child Lifers spent the afternoon delivering the clunky unit room to room, each patient getting around 30 minutes of playtime. I was used to playing bedside Nintendo 64, but this was new. They beamed like they were unveiling a gift. It turns out, they were.

I was 12 when the pain started. It came without warning, gripping my gut like a gunshot wound. At first it came and went, but by the time I was 13 it was constant. After a year and a half of misdiagnoses and unsuccessful treatments, my doctors told me I was suffering from a rare disease called porphyria. Characterized by an extreme sensitivity to light, porphyria is one possible origin of vampire folklore. The disease attacked my nervous system and rendered my legs, stomach, and left arm useless. I lived in literal darkness; the light actually hurt. I was barely conscious for a year.

After proper treatments and years in the hospital – at times on death’s door – I finally turned a corner. I was paralyzed and sick, but more stable, and awake. I was grateful to have my mind. I escaped there. I lived there. Things had been so bad, hoping for more – more recovery, more of life – felt greedy. But then came Starbright World.

The concept was a “virtual playground” where sick kids could explore a vast and ever-growing 3D landscape, complete with secret caves and beaches and the ability to build your own worlds. I logged on and chose my avatar, a glittery blue dolphin. The landing page was a galaxy-themed starscape where little globes, or “worlds,” floated around in constant motion. Feel like flying through the clouds with your friends? “Sky Zone” it is! Have an IV but in the mood for bowling? Why the hell not! There were game rooms and racetracks, holiday events, writing contests, film festivals, celebrity guests, and doctors who explained the ins and outs of common medical procedures.

It was a place where imagination and reality met and the walls disappeared. The lively “chat world” was the heart of the home and filled with kids who were fluent in sick kid speak. We made up stupid names for our ailments. Hirschsprung’s was awesomesprung’s. Porphyria was porphy. My port-a-cath was called Phyllis. That sort of thing. And it was all secure and closely monitored, so you didn’t have to worry about the fellow Kansas-based 13-year-old you were chatting with actually being a 47-year-old creep.

Me, very sick, showing my aunt Winnie the Starbright World program, 2002.

Being seriously ill, especially as a child, is terribly isolating. Everything is a reminder that you’re different, that you’re “abnormal.” Television commercials were mostly about food I couldn’t eat. Visits from school friends highlighted what I was missing; reminders of a life I used to live, and love. Kids relate to one another through shared interests and experiences. How do you explain your pain to someone who hasn’t felt it? The experiences and medical language that accompany chronic illness can feel like a language barrier. When Starbright World entered my life, I suddenly had access to an entire community of kids who got it. It was a virtual speakeasy for kids who all knew the passcode.

Like any space where teenagers congregate, there were couples, marriages, even. We had a prom in Starbright World. My date and dear friend, Adam, lives in Maryland. He has a serious condition that caused strokes when he was a baby and has made surgery a regular part of life. We all had something. On Starbright prom night, Adam had a corsage delivered to my house. We video chatted and spent hours in the community chat room with our friends – celebrating, being kids. We watched movies together from across the country in the community virtual movie theater. I spent so much time on group calls my parents had to get me my own telephone line.

It was two a.m. I couldn’t sleep. My nerve-damaged arm lay swollen and discolored on an elevated foam cradle. It throbbed like it had its own heartbeat. I listened to the familiar beep, beep, woosh of my feeding pump and oxygen machine. The rest of the house was dark and quiet, the only light emanating from my computer. I was home, for now, in between hospital stays. For my 17th birthday, my parents and hospital staff surprised me with an instillation disc that allowed me to access Starbright World from home. I spent every waking moment online. The place was pretty empty that night, but then a notification popped up that a fellow night owl was online. I sent a message and immediately received a reply.

She was in the hospital in Denver. She was 14. Her name was Molly. She was born with an especially rare and severe form of Hirschsprung’s disease, a congenital disorder affecting the large intestine. She’d never known life without G-tubes, surgeries, and hospital stays. We chatted for hours about nurses who didn’t swab our central lines properly, potentially leading to infection. “Been there,” I said. We bonded over misdiagnoses and arrogant doctors who’d nearly killed us. We’d both experienced medical trauma and talking through it, even laughing about it, was our coping mechanism. We’d both learned to speak up and be our own advocates in hospital settings. We took control and took no shit. We talked about movies. We both loved film. We were both writers. The first time we talked, it felt familiar. I got the sense that we were picking up where we’d left off, like the universe was reintroducing us. We talked for hours, every day, from then on. She sent me pictures of her horse and her dogs. She recorded an HGTV-style tour of her house and sent it to me in the mail. She made me Conan O’Brien and George Clooney collages.

Six months and hours of video chats, phone calls, all-night chat room marathons, and instant messages later, we made plans for Molly to travel to Kansas and spend the week. Our moms arranged the details and made sure Molly’s medical needs were clear. She traveled with a portable feeding pump. The jump from online to in-person friendship was seamless. My bedroom was on the first floor and formerly served as my dad’s office before I’d gotten sick. I moved downstairs when I became too weak to walk. It was essentially a makeshift hospital room complete with feeding pumps, IV poles, dressing change kits, and a giant oxygen machine. It was kept dark to protect me from various forms of light exposure. A lot of kids would have been freaked out by the setup; it was a lot to take in. Not Molly. She walked in like she’d been there a hundred times. If Reese Witherspoon and Lindsay Lohan à la “The Parent Trap” had an adorable tiny human baby, it would be Molly.

She sat in a chair at my bedside, at first. We talked about my wall-to-wall movie posters that my incredibly patient and accommodating homecare nurse had climbed up on a ladder to hang. We laughed and took pictures together. After a few minutes, she hopped into my hospital bed and we spent the week making crank calls, watching scary movies, and talking about boys. My left arm was useless so I got really good at playing video games one-handed. We’d play online and piss off boys – and men – who didn’t like getting their butts kicked by a couple of girls. We pulled all-nighters. She didn’t care about my tubes or medicines or pumps. She had them, too. I never felt bedridden when we were together.

After six years in bed, my medicines started to work and my nervous system slowly but surely began its long and uncharted recovery. My home-care nurse drove me to intensive physical and occupational therapy sessions and I learned to walk, eat, and use my arm again. My main goal, though, beyond regaining function, was to move to Los Angeles and live on my own. My parents had one rule: “You can move to Los Angeles when you can stand.” They needed to know that I could at least reach a phone, or my medicine, in the event of an emergency. So I learned to sit up, roll over, and get myself off the ground if I fell. Little by little, my body came back to life.

My stomach had been paralyzed for years, I was fed through a J-Tube – a special kind of feeding tube that bypasses the stomach completely. Molly was there for my first bite of food in five years. My parents had recently acquired a wheelchair-accessible van, and we all piled in and drove to J. Alexander’s. My dad lifted me into a booth next to Molly and we ate pie together. In that moment, with that freaking magical, graham cracker-y key lime pie, I could have died happy. It will always be the best bite of food I’ve ever tasted.

I was still sensitive to the sun and suffered terrible pain in my stomach and extremities regularly. I used my wheelchair to get around most of the time. The tendons in my legs required Botox injections. My body felt like a rubber band stretched to its limit. My bones and joints were a mess. I could stand, though, and, for the first time in over four years, I could even walk short distances. The extent of my recovery was bonkers to my doctors, nurses, and everyone who knew I’d essentially been a large infant dependent on my parents and caregivers for everything just a year and a half prior.

Matty, Starbright moderator and friend, at my home in Kansas, 2004.

I always knew I was going to make movies. Before I got sick, I would practice my terrible British accents in front of the mirror and record it, play it back, and try again. I acted out scenes from my favorite movies and wrote alternate endings. When I got sick, and eventually became bedridden, movies were an escape. My nurses brought me every movie from the communal Peds Unit stash, and they ran to Blockbuster for me on the regular. Molly, Starbright World, and its community moderators confirmed my cinematic passions. Moderators were mostly based in Los Angeles and many worked in the film industry. I had a network of support waiting for me when I was finally well enough to head west.

Eventually, after I’d achieved “can stand” status, my brave-as-hell-family loaded up a U-Haul trailer and schlepped my crazy ass, and my golden retriever, to Los Angeles.

“You survived everything else,” my dad told me. “We have to let you go.”

We stopped frequently, at roadside eateries and gas stations, hoping for a few minutes’ respite from the sun. My stomach hurt. A lot. So much so that I wondered if I was really ready to be on my own. But I blocked out the doubt and focused on the feeling that I had to get to Los Angeles. I’d already missed so much, and life was waiting for me.

I knew how to change a port dressing and set up an IV pump like it was nothing, but keeping house and paying utility bills was foreign to me. Learning to drive in Los Angeles was some next level “Jesus, Take the Wheel” shit. One night, I went the wrong direction on the freeway. I had flashes of “Planes, Trains, & Automobiles.” I called my mom sobbing. I dropped my iPod once and rear-ended two FBI agents on Sunset Boulevard. All I could do was laugh, cry, and ramble like a lunatic about my love for Mulder and Scully. Navigating the adult world was a crash course in what I’d missed.

Me and Molly at a concert in Colorado, 2006.

Sometimes I pinched myself because it was all so weird. Good, but weird. I had gotten used to living inside a body that struggled to function. I was at its mercy, and the mercy of those around me. If I wanted something, it was brought to me. If my bed linens needed to be changed, a complicated, multi-step process ensued. I was pre-medicated with pain meds because the process was excruciating. My dad would lift my body; my mom would carry my arm while it rested on its foam support. I was placed in a chair and a nurse held my head up so I didn’t flop like a baby. Everything was difficult. The idea that I could now do whatever I wanted to do with my body was a novelty. It didn’t feel real, and I began experiencing panic attacks for the first time since before I’d gotten sick. I think the flood of new physical and mental sensations were just a lot to process.

I attended film school. I was so pale due to my problems with the sun that classmates used me to white balance a camera. Rude, but well played. I looked like one of those translucent fish that dwell in the deepest part of the sea. We saved money on dolly rentals because I could sit in my chair and hold the camera. Silver linings galore.

Molly visited often and later moved nearby. We tooled around town in my Jeep – dubbed “Dame Maggie Smith the Jeep” – filled to the brim with medical equipment that was probably unsafe for the road. A rogue IV pole in the backseat nearly impaled us with each tap of the break. We were a sight. Two pasty chicks (porphyria + transplant meds = limited sun exposure) in giant sunglasses, blasting the “Newsies” soundtrack with the windows down and singing like fools.

From left: Me, Nikki, Spencer, Molly and Emily at Spencer and Nikki’s wedding, 2011.

I had a big surgery in 2009 and she came up to the hospital to hang out. She walked around the unit with me while I did slow laps with my service dog, Phoebe; a bulky walker; and physical therapist. Molly never rushed me along. She never walked ahead of me. She walked with me, beside me. We went to see “Happy Go Lucky” a couple of weeks later. We hated it, but I loved that afternoon. I was still slow, unable to bear any weight on my right leg, poking along like a disabled snail. And she was right beside me, holding my arm, guiding my walker, one step at a time. She was tiny. But she had a presence that was as big and strong as a lion. She was protective of those she loved. Whenever anyone messed with us, whether it was an ignorant business owner who gave me flak about Phoebe, or a creepy guy who stared too long, she handled it without a moment’s hesitation.

She lived a lot of life during her time in Los Angeles. She got to be a 20-year-old for a while. She had fun. She attended college and went to Paris and she lived by the sea. She met a guy. The guy. His name was Corey, and they loved each other deeply.

And then a decade after my bedridden days, Molly and I changed places: My health was stable, and she was very sick. She’d already received a small bowel transplant, and later, a kidney donated by her mom. Things were going downhill fast, though, and she had to leave California. Her transplant hospital in Omaha became home. She needed a four-organ transplant to survive. It was a long shot. Still, we hoped.

Molly had so many close calls over the years. She was born with her illness. Going to the hospital was as normal to her as going to school for most kids. Accessing her central line was second nature, preparing medication and IV pumps and dressing changes were routine. And as much as it was a part of her, it didn’t define her. She’d walk five dogs in the summer heat, do a shift at her job as a receptionist in a vet clinic, take care of her own animals, then hook up to meds and IV fluids to try and maintain some semblance of health and normalcy. She was like one of those circus ladies swinging from the rafters, diving through fiery hoops, always nailing the landing. I took it for granted that she would be okay. Surviving was just what she did.

This time was going to be different. Her mom told me I needed to get to Omaha to be with her as quickly as possible. “I never want either of you girls to be blindsided,” she always said.

I arrived at the hospital and talked with Corey and Molly’s family. None of us could quite believe we were losing her. Later, I climbed into her hospital bed. I held her hand and rested my head on her shoulder and I talked about the time we jumped the curb in Santa Monica in the middle of the night because we wanted to go to the beach. We ended up straddling the median before finally freeing ourselves. An actual entrance to the beach was like five feet away, but we didn’t notice that until we had already become criminals. And the time we went sledding attached to ATVs, and the time we visited the haunted hotel where Stephen King wrote The Shining and I was convinced for a year that I had photographic evidence of a ghost, only to realize it was my thumb. And the time we crammed four dogs into the Focus and the red dog was definitely trying to get us to careen off a cliff. And the time, and the time, and the time…

I didn’t see the tubes or the medicines or the pumps. Just her. Just my best friend in the whole world.

She’d wanted to wait until she was better and out of the hospital to marry Corey. Thinking of the future gave her something to focus on and look forward to. It became clear, though, that time was running short.

Ultimately, she had the perfect wedding. Her nurses and doctors transformed a hospital conference room into a wedding chapel with tulle decorations and flower petals on the floor. A beautifully handwritten banner with “Molly & Corey” in cursive hung on the wall. Her beloved doctor gave her his grandmother’s pearls to wear on her wedding day and we all formed a procession line down the transplant unit hallway. She looked beautiful. I was her maid of honor. I stood beside her wheelchair like she’d done for me so many times before and listened as two 24-year-old kids showed everyone in the room exactly what love really meant. It was so sad and so special. She hadn’t been allowed to eat in months. On her wedding day, though, she had red velvet cake, her favorite.

She died a few days later.

When I got married in 2016, I framed a photo of us and reserved a seat for her front and center. Several former Starbright World friends were there. A band of misfit kids with superpower strength, and the adults who guided them through the labyrinth of chronically ill adolescence, had formed a family.

Looking back at my teen years, I recall so much joy. So much laughter, and adventure, and camaraderie. Instead of “the bedridden years,” they were the years of firsts, of lasts, of Halloween costume contests, online film festivals and April Fool’s pranks, prom and late-night movies and soul-bearing conversations that filled my heart and mind with peace. They were the years of pure love. Because of a virtual world of color and communication, imagination and understanding – because of them – I was free.

Left: Me on my wedding day holding a photo of Molly. Right: Becca, former Starbright moderator and friend, with me and Steven at our wedding in Los Angeles, 2016. Becca introduced us a couple years prior.