“How Scleroderma Has Changed My Life”

Systemic scleroderma took my grandmother’s life in February of 2019. It was around December of my third year in high school when my mother brought my grandma to live with us until her condition improved, as it was much easier to help take care of her at our house with her limited mobility, schedule and take her to appointments, and make sure she was eating right to reduce her inflammation. My grandma used to get around with a wheelchair, but because her scleroderma has worsened considerably, she was mostly bedridden and getting out of bed proved to be too painful for her at times.

I remember waking up every morning before school and immediately going to help my mom check in on my grandma, she would change my grandma’s dressings on her feet from where they had started to necrose. While she did that, I would normally help make breakfast for her and go about my way to school for the day.

As soon as I came home from orchestra practice, I would check in on my grandma, share the typical high schooler gossip of the day, or watch the scary movies that she loved so much.

Most nights I worked at a local fast-food restaurant with my sister while I was student to help save a little bit here and there for college. It was now February and I happened to be working one random night when I got the notification that my mom was with my grandma at the hospital. Of course my sister and I were extremely worried and as soon as we got home from work, we stayed up with our dad at the house to figure out what was going on as our mom had not returned yet.

I would not expect the rest of the night to go about the way it did, but I remember that I had left the hospital feeling as if part of me was ripped away. I had lost my grandmother that night, a second mother to me, and it had hurt in all ways imaginable. I
remember spending weeks holed up in my brother’s room (my grandma had stayed in my room) just crying for hours, days, time seemed to blur at that point as I was wracked with so much grief I had made myself sick. I had missed many days of school as I just didn’t care that much at the
time. I had just lost my grandma, attending school was the least of my concerns at that moment. I had a state orchestra competition coming up with my class, and it was either be disqualified due to one person missing or compete. I didn’t want to let my class down by not showing up (I was already missing rehearsals at that point) but I also didn’t feel as if I were ready to leave the comforts of my younger brother’s room and go out into the world just yet.

I showed up that day and played to the best of my ability with my classmates, hoping deep down that maybe my grandma would be able to hear the music as she used to do when she was in much better health.

Life went on after that, college applications, graduations, and whatnot when I had realized something over the years since her passing from scleroderma. Life is incredibly short. Before my grandmother moved in, I had never heard of scleroderma before. I had no idea how severe some forms could be until I saw how the most severe type had affected my grandma physically as well as emotionally. While she was still alive with the condition, I noticed how she was always in pain. There were slight moments where she would be extremely upset, crying to my mother, or depressed at times when my mother would try to encourage her to eat.

These moments I was probably not supposed to see, being a child and all, my grandma probably wouldn’t want to worry me with the complex feelings she was going through, but it has made me mature much faster and deal with the fact that everyone is dealing with something no matter how happy or composed they always seem. Since my grandma’s diagnosis, my aunt was also diagnosed with scleroderma. I have yet to be tested, but deep down, I am afraid to find out if I am diagnosed with the disease that had taken my grandma away. Witnessing the pain firsthand as my grandmother’s scleroderma progressed, it has made me afraid of the chance that I may be taking life for granted.

When you are a teenager, suddenly everything seems so possible, that you’re invincible and you can do whatever you want (within reason).

It’s the classic teenager mindset of course. But realizing how scleroderma affects a person has made me sit back and think about how life should be treated. With the current mindset of many youth, everyone wants things to be done as soon as possible, for school to be over, to graduate already, to leave home for the first time. Almost as if it is a rat race of some sort.

Dealing with the fear and uncertainty of whether or not I am diagnosed with scleroderma, I learned to view my life differently. I was so eager to leave home and go to college as far as I could within the confines of Florida, to get all of my classes out of the way as soon as possible just to move again somewhere far away and work towards the career I was striving for. I learned to take life at a slower pace and to appreciate every passing moment I have with friends, family, and my partner. With everything around me, I try to enjoy it as much as I can, even if it’s as simple as a rainy day or a small cup of coffee.

Though my personal experience of seeing my grandmother live with scleroderma mostly paints a picture of pain and grief, scleroderma has changed my life in the way I currently perceive life, to cherish the memories and experiences I share with whoever in my life, and to take things one at a time with whatever time I may have to live.

– Bella