Enjoy her while you can

That’s what the doctors told my parents in 1993 shortly after I was born. They didn’t expect me to live very long.

The first sign something was wrong was that I was so overdue that my mother’s pregnant belly was black-and-blue bruised. When they finally induced labor, the doctor had to force me out, breaking my arm in the process. The second sign that something was wrong was I was quiet. Babies are supposed to come out screaming, but I wasn’t making a sound. In fact, I was turning blue. They rushed me to the NICU, where I would stay for about a week until my breathing stabilized.

I essentially have a severe form of scoliosis. I was born with 70 degree curve. One of my lungs was slightly compressed, and other organs were at risk if nothing was done. “Enjoy her while you can,” was the advice given to my parents.

After about a week, my parents took me home with a heart monitor. Once I reached 7 months old, I had my first surgery. It was an interior and posterior spinal fusion, removing an extra half-formed vertebrae. I went home in a full body cast covering everything except my arms and legs. Even so, I managed to walk and run at normal times, thanks to my parents getting me a toy that functioned as a makeshift walker. Every six weeks, the cast had to be changed, and I wore it for about a year. Once it came off, on came the body brace. At this point, my parents were told I’d live possibly until I was 13 years old.

When I was about three and a half years old, my parents learned about an experimental treatment. It was called the Titanium Rib Program, and it was still undergoing trials. In the late ‘80s, Dr. Robert Campbell invented the vertical expandable prosthetic titanium rib, better known as VEPTR. It’s a curved, metal rod that attaches vertically to the spine to help straighten the spine and separate the ribs, giving the lungs room to grow. The only place in the world where you could get it was at CHRISTUS Santa Rosa Hospital in San Antonio, Texas. So that’s where my parents took me to be evaluated. I was approved for the program and became experiment #20 (or something like that).

My second surgery was in 1997, at four years old. I remember this one, a bit. It was the only surgery my dad went to San Antonio for. The only clear memory I have of it was being terrified having to get my blood drawn, and my dad promising me a happy meal for being brave. This was the surgery where I had my VEPTR put in. It was the first of many operations. As I grew, the device needed to be expanded or sometimes replaced. So from the age of 4 until 17, I had surgery every six months.

Truthfully, I had no idea I was any different from any other kid until I entered elementary school. I suppose that’s when anyone’s glaring quirks and differences are harshly pointed out to them. I remember on my first day of first grade, Mrs. Mack drew on the chalkboard what not to do with me on the playground. Don’t push Rebecca down the slide. She has a bad back. At six years old, I felt mortified. I can still remember my face turning red and wanted to erase the board. I wanted the kids to play with me like they’d play with anyone else. I hated being treated like I would break. This became a theme in my life and a defining personality trait. I wasn’t going to let anyone tell me what wasn’t possible. I was going to be normal, and I was going to do whatever other kids could do, scoliosis be damned! I tried ballet and gymnastics (and was kicked out of both lol), and I let kids shove me down the slide at recess. The words “cripple” or “disabled” became curses to me. I refused to identify as having a disability because that meant I wasn’t like everyone else, that I couldn’t do what they could do. I had to have a special needs P.E. teacher visit me once a month, and at first they weren’t going to allow me to participate in gym at all. They were going to make me do crossword puzzles while the other kids did crabwalks and played frisbee and all the other fun things we got to do in gym as kids. I had to argue my point to adults to get them to ease up. I remember being at a parent-teacher IEP meeting with the principal, my homeroom teacher, and the special gym teacher in fourth grade and essentially negotiating with them. Let me do things, and we can adjust as needed. Looking back, I’m really proud of my younger self for not giving up and assuming I couldn’t do things. I think I’m in better health today because of it. I got my doctor to sign off on gym, a skiing field trip, dance classes, girl scout camp, the list goes on. Many kids I met didn’t even know I had a condition until I had to go away for a week for surgery. I liked it that way.

Of course, that also meant that nobody knew the extent of what I was going through. I didn’t talk about it with my classmates, because I didn’t want them to look at me any different. And when things did get physically taxing during gym or extracurriculars, I tended to keep it to myself to avoid drawing attention to my condition. But I’ll tell you what it was really like for me, having all those surgeries—30 in total.

My mother and I would get up very early and catch a flight from D.C. to San Antonio. We’d then wait for the shuttle to take us to the Courtyard Marriot in town. We went to this same hotel so many times throughout my childhood, that the staff started to remember us. Monday was test day. We’d go to Santa Rosa hospital and I would be subjected to a number of medical tests. The nurse would show me an “I Spy” book to distract me while I got my blood drawn. Every year, I’d try to convince Nurse Sarah not to take my blood. I’d always argue that they had my blood from six months ago, just use that! Nurse Sarah would shake her head and say it was out of her hands, Dr. Campbell would be mad at her if she didn’t take my blood. There was also the breathing test, in which I’d have to breathe out as long as I could, take breaths and hold them, etc. while a machine measured my lung capacity. Another breathing test put you in this clear box and it would feel like the air had been completely cut off. I would have to attempt to inhale with all my strength, even though it felt impossible. This was (I think) to measure the strength of my lungs.

There were x-rays, cat scans, urine tests…but the absolute worst test of all was the prick. I’m 31 years old, and I’m still scared of the prick. One nurse told me that kids would throw up at the sight of him, out of fear. The prick is a blood test, but instead of drawing blood from a vein in the arm, a short and wide blade rapidly pierces the flesh of your index finger, cutting into the muscle. It is so incredibly painful. They then milk the wound, getting blood into a small, thin tube. It hurts for at least 30 minutes after and is sore for the rest of the day. I used to bolt down the hallway—the nurses would have to chase me and hold me down. I still remember the first time I offered up my finger willingly. I was 11 years old, and my little sister had come to the hospital with my mother and I for the first (and only) time. I think I wanted to be a big kid in front of her. So I put on a brave face and offered my hand to Nurse Sarah, dramatically looking in the opposite direction. Of course, I still cried when the deed was done, but I got to feel the glowing pride of being told how mature I was.

After a day of being poked and prodded, my mother and I would walk back to the hotel from the hospital, stopping at the market square to take in all the Mexican stores. Then, my mom would watch her soap opera on the hotel TV (General Hospital), and then we’d play in the hotel pool. My mother did a wonderful job of injecting fun into what would otherwise be a difficult experience. In the couple of days before my surgery, we’d explore San Antonio. There was the Riverwalk, the magic store in the mall where I’d buy fake cigarettes, the Ripley’s Wax Museum, the Alamo, and much more. We’d go to one nice restaurant each trip. There was an Omni Hotel on the Riverwalk and inside was a restaurant called Las Canarias. My family didn’t have much money, but my mom would order us a cheese plate and it felt fancy and special. We’d then walk along the river, listening to the live mariachi music that was playing. I am forever grateful to my mom for making these trips fun for me.

The next morning, I’d sit and watch my mom eat breakfast, as I wasn’t allowed to eat before the surgery. The hotel staff would wish me luck and then we’d take the trolley to the hospital. We’d sign into the front desk and I’d play in the playroom until they called me. By this time, the nerves would be creeping in. There’s a waiting area close to the operating room where you sit in a bed and answer all sorts of medical questions until it’s time. There’d usually be a cartoon on the television, Dragon Tales oftentimes. It was so cold in there, and my stomach would be churning from a mix of hunger and nerves. Eventually, it would be time. My mother would put on scrubs and a mask, and they’d put me on a stretcher and roll me into the operating room. Even after having several surgeries, I’d still be so nervous my teeth would chatter. Surgeries are scary. They’d transfer me from the stretcher to the operating table, which was cold and hard. Glancing to the side, I could see the tools they were about to use on me. In the early years, they’d let my mom stay with me until I went under, her hand squeezing mine. But when I got older, like age 11 and up, they’d make her stay behind and it always felt awful going in there without her. I think no matter how old you are, there are times when you want your mommy. I’d lay on the slab, bright lights above me, adults in scrubs and masks around me. They’d give me a gas mask to put on, asking me what flavor I wanted. I’d often choose bubble gum flavor, and now I can’t chew pink bubble gum without being transported to an operating table. They’d tell me to breathe deeply, and sometimes they’d start telling me a story. It’s not as simple as getting sleepy. Sound gets strange and fuzzy, your brain feels likes it’s being massaged, and for me, I’d always get this feeling like my entire life had been a dream, that the entire hospital experience wasn’t real. It’s hard to describe.

Then, in an instant, it’s over. You’re walking up, groggy and sore, in the recovery room. I’d always be in a foul mood. God help whatever nurse had to deal with me as I woke up. They put ointment on your eyelids to keep them shut during surgery, and when you first wake up, your vision is blurry. You’re also oftentimes incredibly confused when you wake up, so I’d often start croaking out, “I can’t see! Where’s my mom?!” I say croak because they stick a tube down your throat during the operation, and you wake up with a sore throat and difficulty speaking. My mom would never be there when I woke up. They make parents wait elsewhere until you come to. I’d always be a beast to the nurse, demanding she bring me my mom immediately!! Thank god I was a cute kid.

It always felt like years until my mom would come to my bedside, and I’d immediately feel at ease. That’s when they’d put me on a stretcher and transport me to my hospital room. The hard thing was being alone in the room at night. When I was very little, my mom would sleep in a chair, but as we both got older she would go back to the hotel to sleep. I’d stay bedridden for about a day, but by the next day I would insist on getting out of bed and dragging my IV to the playroom. Sometimes I’d just explore the hospital for fun. I got to know all the nurses over the years, and it almost felt like a second home at times. You don’t get very good sleep in the hospital, as you’re woken up several times throughout the night to get your vitals checked and get pain medicine. Sometimes the hospital would have fun activities for the kids, like scavenger hunts, or board games, etc. I’d make friends with other kids on my floor. It wasn’t all bad. By the time I was ready to be released, I didn’t want to leave. Leaving meant going back to school, obviously. Boo.

Going back to school was always difficult. I was sore, irritable, and a week behind all of my schoolwork. In my junior year of high school, I came back and my English teacher forgot why I was gone (despite multiple meetings with my parents) and threatened to fail me for skipping class. A lot of the times my peers would forget I was gone, which kind of hurt my feelings. One friend saw me in my sophmore year and said, “Hey! Where’ve you been?” while slapping me on the back. It was only after my blood-curdling scream that he remembered. Entering my teenage years, I became more aware of my body and started to compare myself to other girls my age. I started to feel self-conscious about my scars, the bumpy terrain of my back, how short I was. I convinced myself that nobody normal would ever want to date me because I was deformed. Sometimes I still struggle with those kinds of thoughts. Entering high school, though, the light was at the end of the tunnel. In my junior year of high school, I had my very last operation.

This one involved permanently screwing rods into my spine to secure it in place. It was different than the other surgeries. Far more intense. They warned me I could end up paralyzed. I was in the hospital for a month rather than a week. While for other surgeries, I was out of bed sometimes the same day of the operation, this time I couldn’t move. I needed a catheter since I couldn’t leave my bed. The pain was unlike anything I had yet experienced. A nurse would come in each day for physical therapy. First, it was as simple as making me turn on my side in bed. Just doing that felt like the flesh of my back was being torn off. Eventually, I had to sit up in bed for ten seconds at a time, and after a couple days, I had to stand up. These sound like easy tasks, but I can’t describe how hard they were for me. The nurse challenged me to walk across the room, and I told her I didn’t think I could do it. She didn’t know this, but I was not one to say “I can’t.” Thinking I was being dramatic, she urged me to do it. I walked across the room and immediately vomited and fainted. Recovery from this surgery was long and painful, but I refused to pause my life. A week after being released from the hospital, I was working as a stage manager for our school musical, taking pain meds at intermission.

It’s been 14 years since my last surgery. I’m 31 years old, much older than anyone ever expected me to be. Today, I’m not ashamed to admit I have a disability or that I have limitations. I can’t carry heavy weights, I can’t run long distances or even walk for too long. But now when I get winded on a walk, I’m not afraid to ask a friend if we can slow down. I’m not afraid to ask someone to carry something for me.

People don’t know what you need until you tell them. And if anyone makes you feel like a burden, they aren’t worth having in your life. My scars are a reminder of what I can endure. They’re a reminder of what I’ve survived. And I’ll continue to push my own boundaries, try new things, and live life to the fullest. You gotta enjoy life while you can. ꩜