How Scleroderma Has Changed My Life

Death. That is how Scleroderma changed my life. As you read my application, you can see that I am affected by this ailment. I am not dead. Physically, that is. Death is a spectrum.

The first time I began dying was in October of 2019. The symptoms arrived on a crisp fall day. At the time, I was big into photography. I dragged my younger sister to the local park so I could take her picture. On our way home, I noticed the lack of color on my fingers. They were cold and numb. A quick run under warm water relieved me. As the weeks went on, the same manifestation continued to grow up my limb. Every morning, I’d wake up with no feeling in my arm.

More evidence showed up in the middle of November. PE was (and still is) a dreadful class. That day, we went to our football field to run the track. The coach had a rule that we must run there from the gym. I was no marathon runner, but it never gave me too much of an issue. However, that day my lungs began to tighten after 100 feet. I had to pretend to tie my shoe to catch my breath. Throughout the period, I struggled. Eventually, I told the coach that I couldn’t breathe. Instead of sending me to the nurse, she preferred to have me walk. Everyone I discussed my concerns with, including my mother, brushed it off as allergies. However, I knew better. I’ve had allergies my whole life; it never had that effect. At the same time, my fingers developed these ‘infections.’ Dark scabs covered each of my fingers. The pain was like nothing I’d experienced. I blamed it on the lack of sanitation at the local nail salon, but something much more sinister was brewing.

It took two months for my mom (an EMT) to recognize that I wasn’t being dramatic. To give some background, I played violin for 12 years. Both the use of my wrist and the family history of carpal tunnel gave a reasonable answer. The numbness was simply caused by a pinched nerve. Physical therapy had treated the rest of my household, we merely needed a referral. The referral that was made was not what we had anticipated.  Belatedly, she made an appointment at my PCP’s office expecting the same answer. The night before, she called me while I was at my dad’s house. She tells me that she had a patient on the ambulance that had Raynauds Phenomenon. It’s so familiar, yet not. She slightly changed her view after this instance. I kept hearing the word auto-immune exit her mouth, yet no definition came to mind. The worst disturbance I’d endured up to that point was strep throat in 7th grade. There I was, 15, and getting my blood drawn for the first time. The nurse and phlebotomist had to escort me to a private room. They thought I was going to lose consciousness. Luckily, I did not. Thoughts were evolving quicker than we both could keep up with. My mom – who claimed she knew everything – didn’t know. She had guesses, yes, though none of them were clear-cut. We wouldn’t know until the bloodwork came back.

I am not a patient person. The three days it took to get the results seemed like an eternity. When I got home from school that day, my mom told me my bloodwork was worrying. My ANA (antinuclear antibodies) levels were 1:2500. Immediately, they referred me to the Saint Louis Childrens Hospital Immunology and Rheumatology center. If you know anything about this hospital, it is world-renowned. It takes months to get an appointment. My name must’ve obtained priority because, within 30 days, I had an appointment. The days leading up to it progressed quickly and suddenly, there we were.

My heart beat out of my chest when we pulled into the colossal parking garage attached to a clinical institution. I’d never been to a place so full of sick children. Now, I was one of them. A tall, bubbling fish tank kept the waiting room peaceful. Blue, yellow, and even purple fish swam in circles. Children were the target audience, yet 15-year-old me envied these carefree aquatic creatures. For a spare moment, I wished I was in that tank, hiding in the driftwood placed delicately in the corner. I could almost imagine the salty water stinging my skin. That pain was mild compared to my achy bones and fiery hands. I simply wanted less. I wanted it to be gone. At that moment, I died a little more.

When they took me back to the primary-colored exam room, the nurse took my height and weight. Typically, that wouldn’t be much of a concern, except that I’d lost ten more pounds since my last appointment. I was down 20 pounds in a month and a half. As we waited for the nurse practitioner to examine me, I lay on the cot and counted how many tiles were on the ceiling. I tried everything in my power to distract myself. Hint: it barely worked. That first appointment was the longest. They asked questions I did not have answers to. Finally, they prescribed some medication. Before, I took four ibuprofen at a time and Valium to sleep. Thankfully I was still on Christmas break and had time to adjust before being thrown back into school. Still, the acclimation period dragged on.

Being a part of the Art Club, we had a field trip to a small art institution. My mom was worrisome about going with it being so soon after starting my medication. What was the likelihood that I would have a reaction? My cogent skills were put to work when convincing my mother. I assured her that I’d be fine and I was in good hands. The only teacher who really understood was my art teacher as she had a friend with the same condition. Luckily, I had my best friend with me, too. While the instructor was talking, I began to feel dizzy and my hearing was going. Then, my vision was foggy. I whispered to my best friend, Nat, “I think I’m going to pass out.” She quickly sat me down; nearly everyone was staring at me. My medication had caused an episode in front of everyone. Embarrassment overcame any pain I was having. I died again.

Finally, the answer to my pain came at the beginning of February. My mom and I were at a clothing store. As we were checking out, she got a call. When she saw the caller ID, she handed me her card and walked away. Her face immediately dropped; I could hear her pitch increase. I met her in the car and she stood out the door, smoking a cigarette. She took the stick away from her lips and spoke the dreaded words, “You have scleroderma.” The diagnosis was foreign. Of course, my immediate reaction is to look it up. I tried so hard to be constructive about the situation. Holding in my tears and dissembling my true feelings, I spoke untruly. I’m glad we know what’s going on seems better than my life is over. In this case, both rang true. Though we had a name to my madness, that was about it. What were my treatment options? How long will I suffer? Will I always have these ulcerations on my fingers? Another piece of me died.

I was losing myself with every call of bad news. Mentally, I crumbled. Specks of artisticness, intelligence, or minute hygiene clutter the metaphorical floor. Forever, I changed. Walking through school, my peers probably thought I was too lazy to care for myself. My hair being unbrushed and clothes-too-big made my appearance decline. My mother had to change her work schedule to help me get ready in the morning. My diet became more high-calorie. Tasks such as brushing my hair were undoable without help. This rotten disease sucked every bit of personality I had left. I had everyone worried. My family even claimed my dog (who has always been attached to my hip) became more protective. I didn’t notice at the time. Even now, I feel guilty for what I put my family through. Day after day, my mom came home from work to me on the couch, sobbing in pain. Each time, I died again.

Much like death, Scleroderma is nothing I’ve ever taken lightly. I lost so much of myself, but I also made room to bring new in. After we got my condition and diagnosis under control, I blossomed. The summer after my sophomore year I had my first-day pain-free. That summer was great. Every morning I woke up early and walked my dog almost two miles. We both felt great. The clothes I wore morphed from sweats to patterns. Undoubtedly and undeniably, my confidence shot upward. Is this directly correlated to my scleroderma? No. One thing I can connect to it is the lesson of life and death. After suffering for months, life slowly filtered out death. As monotonous as it sounds, life is so short; Precious is the oxygen that kept my cells alive. My body was (and still is) incredible and tenacious for working with the medication. I needed to live. I wanted to live.

Life and death are two wholly distinct concepts. They’re both invaluable experiences. You can’t have one without the other. They’re fraternal twins who, despite their hatred, lift each other. I’ve learned more from them than I have from any teacher. No lesson plan or worksheet holds the correct answer to life and death. It’s up to the owner to interpret them.

Now, today, as I’m writing this, I’m living.

–Halee