Scleroderma, sketchbooks, and self-esteem
Me in first grade, when I was first diagnosed with scleroderma.
When I was five, my brother had his appendix out. I don't recall much from this time, because I was only in kindergarten. I remember he had a close bond with the nurse, who brought him cheeseburgers from the food court, and recall spending extra nights at daycare because my parents had to balance time at the hospital. But there was one night when my dad came to pick me up and he had good news; the local pharmacy had held an art contest a few weeks before, and whoever did the best job coloring an identical coloring page got the prize of a 100 pack of crayons. It even had a built-in sharpener. I had submitted my coloring page the week prior, and had just been announced the winner. I remember sitting by the window in Andy's hospital room, coloring in a coloring book about postage stamps with all my new crayons.
Around the same time, I had been diagnosed with an autoimmune disease called scleroderma. It manifested itself first in an odd blueish-white blotch on my right temple. My pediatrician referred my parents to a dermatologist, who diagnosed the disease. I remember the doctor had a big beard and that he spent a lot of time examining my scalp. He had a hard-to-pronounce name that sounded like "Zin-cabbage" to my little-kid ears. My mom always gave me the notepad and pen from her purse so I could draw while he examined my head and they discussed things. We sometimes played the doodle game; she would make a squiggle, and I had to make the squiggle into a drawing.
In 1995, we went down to New York City to see a specialist at the Hospital for Special Surgery. This doctor was using a relatively new treatment method involving a low dose of a chemotherapy agent called methotrexate, which suppresses the immune system and had been proven to slow the progress of the disease. Scleroderma is characterized by the hardening of tissues, often the skin, but sometimes this goes as deep as the bone, organs, and/or joints. As the tissue hardens, scar tissue builds up and the affected area deteriorates. In my case, the deterioration resulted in a linear deformation in my skull. The parts of my scalp that were affected remain shiny and taught against the indent, and no hair grows along it because the hair follicles were destroyed.
This type was called Linear Scleroderma en coup de sabre. "Coup de sabre", meaning "sword strike", referred to the development of a deformity resembling a scar from the stroke of a sword. My mom always explained this to hairdressers when I was growing up so that they wouldn't be alarmed, and I am still always careful to part my hair so that it is covered. I have always been a little sad that I can't cut my hair too short for fear that I wouldn't be able to cover it up.
At the hospital in New York City, I met the specialist in Pediatric Rheumatology. I did not want to be there, and throughout the rest of my childhood, the specialist would pull out my original patient photo taken on that day to give me a laugh. I was hiding under the exam table with a tear stained face and scandalized expression. From my memory of the day, I had just been told I would be getting a blood test, and that this was somewhat like a shot. After the appointment, my parents took my brother and I to FAO Schwartz, where I picked out a new set of markers. There were only five colors (pink, orange, lime green, blue, and purple), and they were housed in a pink plastic case decorated with a ballet slipper decal. I colored with them the whole ride home.
From age five through seven, I took the medication that required a weekly blood test. At my first one, my mom didn't tell me why we were at the hospital because she didn't want to scare me, so the moment I saw the needle, I sensed a sneak attack. I threw a fit, and they had to strap me down in order to draw the blood. I remember I had a scrape on my knee at the time, and the strap rubbing against it made it hurt more.
But once the blood tests became more regular, I got used to the routine. I took the medication every Friday night. My dad brought me to the hospital every Wednesday morning. The nurses all knew us. I would sit on my dad's lap, and they would clean my arm with a blue and white striped alcohol wipe. I have almost a nostalgic association with that smell. My dad would tell me when the needle was coming, and then I would feel a pinch. After the pinch, I would watch the tube fill up with blood. They told me the needle looked like a butterfly, which made it less scary. They always gave me a Looney Toons band-aid, or one with Snoopy or Woodstock, and sometimes even a sticker. I kept all the stickers in an album. My dad would then take me upstairs to look at the newborn babies. We would get food at the cafeteria or hot cakes at McDonald's because I had been fasting, and then head into school late. We would stop by the principle's office to check in, and then he would walk me to class.
One year during the holidays, there was a student art show at the hospital and my work was exhibited. After the blood work, we stopped by the show and I saw my composition of a dog dressed as a bandit, holding a lit flashlight. Within the cast of the flashlight, you could see a cat resting in a basket with a wounded leg. The drawing was hanging in a frame and seeing it made me swell with pride.
Early on, I was being treated with a different medication and my doctors were worried about vision damage as a side effect, so I regularly got my vision checked for deterioration. I didn't understand this at the time, and hated the eye drops. I also had an MRI to make sure my brain was not being affected by the disease. They gave me a medicine to knock me out because I was young and might be scared or have trouble sitting still. I remember my mom reading me a book about a house full of bunnies as I got sleepy. They put me in pajamas that had Barney on them, and I remember thinking Barney was for babies.
I also had a monthly appointment with the specialist at his office in White Plains, meaning that I missed one Monday at school each month if we couldn't time it on a three-day weekend. Kids asked me why I wasn't there and I had learned the refrain, "I had an out-of-town doctor's appointment." I spent most of the car ride coloring and drawing, and we listened to Disney music on cassette tape. This was back before kids were supposed to sit in the backseat, so I got to sit up front with dad the whole four-hour trip. Once we were there, occasionally the doctor asked if he could see my sketchbook. It felt nice to share something about me besides my disease, which I didn't even really understand. The secretary always gave me a Twizzler on our way out.
In between my visits to the doctor, I loved school. I liked reading and writing, but most of all I loved art class. Mrs. Menning was my art teacher, and she encouraged me at all times. She was known for being strict, but I treasured her approval. During class, she would call up each table to her desk so she could review our technique and compositions. I remember she always had a mechanical pencil that looked like a regular pencil because it was yellow with a pink eraser and a beige tip. She gave approving nods when she liked something and would encourage me to keep going. If she thought something needed work, she would circle it lightly with her fancy pencil.
I was painfully shy for most of my childhood, and I was nervous around doctors and teachers and any of my classmates who weren't my friends. I had trouble figuring out how to start conversations, so usually I wouldn't. I was self-conscious about coming to school late once a week, and sometimes kids would ask me what was on my face. But whenever I was drawing or coloring, I felt more at ease because I could keep to myself. And to my delight, if I drew something nice, like a rainbow or a tree, my classmates would come talk to me. It was easier to talk to them if they started the conversation, and if we could start with something easy - like art.
In middle school, I spent all of my free time drawing. I drew my favorite movie characters and book characters, mostly in graphite. I had a treasured spiral-bound sketchbook that I carried everywhere. Eventually the cover fell off and I had to flip the back cover to the front to protect the drawing on the first page (of Arwen from Lord of the Rings).
When I was eleven, I was ordered another MRI to see if there were any changes. I had to wear leggings to the appointment because the metal zipper and button on my jeans would mess up the machine. I also wore a white shirt with a pair of ice skates embroidered on the front. I worried that the silver thread used on the ice skate blades had metal in it, and that it might mess up the machine, too. My dad assured me that it was just string. The office said we could bring in music for me to listen to in order to make the machine less scary. I didn't have any music at the time, so we brought the soundtrack to The Little Mermaid. It was peculiar to listen to "Under the Sea" with all the metallic clanking and thumping going on, and from within the slotted plastic covering over my face. This was around the holidays, and I had just received a new sketchbook. When I got home, I spent several hours perfecting a drawing of what it looked like from within the plastic contraption that had covered my face, and titled it "View from the MRI".
At school, I loved having a locker, and the idea of having lots of books to store in my locker. I made custom magnets using magnetic tape to decorate the interior. My dad talked to me about the importance of getting good grades so that I could go to college, and I wanted to go to the same college that he and my mom had attended. I stayed up late every night doing homework, and worked to stay on high honor roll.
One day, in seventh grade, I was at my locker switching out my books. A popular girl was walking by and I heard her say to her friend, "What is up with her face?" To my horror, I looked up and she was looking at me and frowning. The following year, a teacher aid kept me after class because he thought that the blueish-white mark on my temple and next to my eye was a bruise. He thought maybe I was getting abused and asked if I needed to see the nurse. This was around the time I started wearing makeup. I spent a lot of time at the drug store, trying to figure out my skin tone and spending my allowance on coverup. The disease had left the skin on my right temple darker and translucent, and my veins extremely visible. In front of the mirror every morning, I would carefully trace my veins with coverup and then do a layer of foundation. The overall effect made my temple look chalky and pale and the makeup is painfully obvious in photos from that time, but at age thirteen I didn't know any better.
During adolescence, I grew tired of my disease affecting my self esteem. I confronted my parents and told them I resented having to miss so much school, which was also true. After all, I was no longer on medication, and for one reason or another, the Scleroderma seemed to have become dormant. After one appointment, I came back to my accelerated math class the next day to find there was a quiz on the algebra I had missed the day before. I started crying and worried that I was going to fail. When I started running cross country and track, there was a rule that if you didn't attend practice the day before the meet, you couldn't compete in the race. I had to confide in my coaches that I had recurring medical appointments. Occasionally Dad would try to make it home in time for me to go to practice on Monday afternoon.
Even though I only missed one day per month, I grew to resent that I never had a shot at the "best attendance" award. I prided myself on not having missed a day of school between third grade and my senior year of high school due to so much as a cold. I felt this proved how healthy I was, and that I shouldn't have to go to so many appointments. After some discussion, everyone agreed we could safely shift to bi-annual appointments. We tried to schedule them during school vacations. But a couple years into high school, I stubbornly told my parents I that I could monitor it myself. My parents agreed that this was ultimately my decision to make.
A year into art school, my scleroderma had come back, this time on my left ribcage and back. I started seeing my Rheumatologist again, this time every three months. From school, it was a much longer drive, and more demanding on my parents because they had to shuttle me back and forth. I tried to help with driving when we weren't too close to the city. And I still hated missing school. I started taking the same medication, and a nurse at the school health center drew my blood every week and reminded me to get enough iron with my vegetarian diet. I found it hard to remember to call for the results every Friday and see if my white blood cell levels and kidney function were normal enough to take the medication later in the day. Occasionally, if I was battling a cold, they would tell me to hold off. Other times they would say everything was fine. Most of the time, I just forgot to call and would take it anyway, which I realize defeated the purpose of having the blood drawn in the first place. In those weeks, I hoped someone would call me if something looked terribly off, but reflect now on how immature I still was despite feeling like an adult taking charge of my own medical care.
During one of my visits to White Plains, the doctor asked if he could see some of my artwork sometime, so I brought in some drawings during the next visit. When I was a kid, I wanted to feel like a grown up and hated when medical professionals asked if I had any questions about my disease. I felt like having questions would make me appear worried, which would make me look immature. Mostly I just wanted to know when I could stop going to the checkups and when I could stop getting blood tests. But when I was older, I did ask questions. And what's more, a doctor who I had been seeing for 15 years and I bonded over art, and he encouraged me. There were photos all over his office of exotic locations that he had explored across the world. He had taken all of the photos himself. One of my favorites was of Ta Prohm in Cambodia, the famous temple with massive trees encompassing it. Another was of polar bears playing in the snow. He said that whenever he traveled to conferences, he took some time to go out and explore with his camera. Around that same time, I got a digital SLR camera and I carried it everywhere and photographed everything. I was hard to travel with because I was constantly fussing with my camera settings. But digital photography came to play a huge part in my paintings as I learned to take more intentional photos.
A new caveat that hadn't applied when I was a kid was that no alcohol could be consumed with the medication. This allowed for a very healthy lifestyle compared to that of a lot of other college students. I became an RA because I figured I wouldn't be doing any partying and could make a buck insuring that my peers didn't party too hard. I took on a third studio class, even though two per semester was recommended. I also joined the school's cross country team to stay in shape, and instead of nursing hangovers on Saturday mornings, I was at races. I felt healthy, albeit stressed out from all the extracurricular activities.
When I studied abroad in Paris, I resented that I couldn't have any French wine. I broke the rule a few times and didn't feel any side effects. While in Paris, I carried a sketchbook around with me. I would find a good place to sit, and draw the architecture and people for hours. I was always nervous about approaching people and practicing my French, but when I was drawing, people would talk to me in French and I could practice answering them. The same happened with Anne-Katerine, the Parisian who hosted me while I was in Paris. I often didn't know what to say to her. But the sketchbook had been a gift from her a few weeks after my arrival, and she asked me every day if I had any new drawings to share. We talked about art all the time. She took me to the Petit Palais, the musée d'art modern, the musée nationale de céramique, and gave me directions to the Musée Marmottan so I could see "Impression, Sunrise" by Monet, the namesake of Impressionism. She gave me a day-by-day calendar of Impressionist paintings to hang in my empty bedroom. And all the while, she urged me to go outside to draw. I wrote my thesis about using a sketchbook as a tool to relate to the world, something I had first picked up in the doctor's office when my mom and I played the doodle game.
Once I had graduated college, I lived in France for the summer, stayed on the meds, and refrained from drinking while I traveled. I drew whenever I could, and took lots of pictures. By the time I returned to the states, the disease had again become dormant, and I didn't want to bother with the upkeep of medications and blood tests when I moved to Boston, so I didn't seek a local specialist.
The disease flares up a little from time to time, but the last time I visited the specialist, I asked him if there was any risk like there was when I was younger. He went into great detail about the different types of scleroderma, and said I was lucky because I had a localized version. If I had systemic scleroderma, I was at risk for joint deterioration, and the same symptoms that I had experienced on my face could affect in my joints - specifically my fingers. I worried about this, because this could take away from my fine motor skills. Patients with systemic scleroderma often had mobility issues too, because the knees joints and elbows were effected. Internal organ damage and breathing trouble was also a symptom, and while I had developed asthma in adulthood, he felt it was unrelated. I asked what the chances were of me developing systemic scleroderma. He said that he has spent his career studying the disease, and has never seen the jump from localized to systemic. He said that some people have claimed to see it, and that he couldn't deny that where there's smoke, there is fire. We determined, however, that because it was localized and contained to my trunk, I could consider the current symptoms cosmetic and not dangerous. But I remain vigilant; if the disease were to return to my scalp, I would likely again need aggressive treatment.
This past year, I went to a Halloween party dressed as a popular tv show character who fights monsters. I was chatting with a group of friends when a girl I had never met said the horror makeup on my face was very convincing. She pointed to my temple. I told her that the markings she was referring to were just my face, and abruptly left the party as she stammered an apology. I felt bad later on. But the fact that one might view my face as horrifying stung because it really is just my face. I've spent my whole life learning to accept my face as it is, and not cover it up for fear of judgement.
Fortunately, I am no longer a sensitive adolescent. And in the grand scheme of things, I am lucky that I did not suffer any vision loss, joint pain and stiffening, brain damage, or any more serious, more noticeable deformities from the disease. My hair covers the worst of it, and adults are not nearly as cruel and tactless about cosmetic abnormalities as children. I am lucky to have two loving parents who drove me across the state every month for specialty care, who got second opinions, and who investigated unusual treatments so that I recovered. And missing school only made me value my education more, so much that I would rather miss vacation than class.
On the train home from work recently, I caught an interesting story on The Hidden Brain about the rise of narcissism in millennials. Psychologist Jean Twenge discussed how many children today are coddled into thinking that they are special just because "You are YOU!" And while this prevents emotional neglect, children should also be urged to build their own self-esteem and not simply assume that they will be rewarded in life for their mere existence. Otherwise, young people end up becoming disillusioned and discouraged adults when opportunities fail to fall in their laps. She spoke a lot about narcissism in today's culture, too. We live in an age where everyone is very into the self; from selfies everywhere to politicians touting their own accomplishments at any chance they get. Social media outlets encourage members to propagate flattering images of oneself, one's children, one's accomplishments, one's fancy dinner, and anything else that might make one appear more unique and special to others. Being positive is one thing, but fixating on an alluring digital presence does not a positive lifestyle make.
Having a disease that manifests itself cosmetically has affected my relationship with narcissism. I am certainly guilty of taking selfies when I like how I look and documenting the fun parts of my life. Like many, I grew up extremely sensitive to how I looked, and felt the need to cover up what others deemed visually unappealing. I often relied on reassurance from my peers and from adults, and am still very sensitive to criticism. I've spent a lot of time with a handheld mirror trying to see what my deformity looks like to other people, and have combed my hair just so to conceal it.
But I think for the most part, my relationship with my appearance has not so much revolved around vanity, but around trying to push past my appearance. One of the most demoralizing parts of having scleroderma has been my symptoms being used as a learning opportunity. For instance, an intern would clumsily ask me to crane my head toward the light so they could see the symptoms properly, and then awkwardly paw through my hair. They would make observations about what they saw and felt and I often felt that this was done without consideration of how those stated observations would make me feel. And the fact that a person wanted to learn from me by studying the thing about which I was most self-conscious made my sense of self-worth plummet, especially in my teen years. But I know now that scleroderma is a rare disease and exposing more people to its different manifestations helps inspire more people to research it and specialize in it and create more effective treatments for it, maybe someday leading to a cure. And as a patient, scleroderma has forced me to build up my own self-esteem. It made me be less vain as an adult, and taught me to search for beauty in unusual places and venture out of my comfort zone. I worked hard at school, at art, and at sports. I've struggled with all of them, and am unremarkable in my struggles. I still have a rare disease worth studying, and that has nothing to do with me as a person. But I have provided myself with evidence that there are other things about me that are valuable too. Most of the time I just want to blend in, but I think it's okay to give myself some credit now and then.
