As the years went on and I became friends with more people with scleroderma, losing them was a risk I’d always have to face. It’s nothing you ever get used to, and it becomes frightening because in the back of your mind you wonder if scleroderma is going to take your life, as well. The experiences with death and grief have made me endlessly grateful for every little thing in life. I’ve placed a very high value on the time spent with people I love.
2. Being unable to use my hands
After I was diagnosed in my early 20s, I still tried to do the normal things a 24-year-old would do. One day, I was preparing food to cook and couldn’t open a package of chicken. This was the first time I was unable to do something on my own. I asked for help from someone I lived with at the time, but they didn’t help me. I left all of the vegetables, seasonings, and chicken out on the counter, got in my car, and sobbed uncontrollably. I screamed and cried and felt demolished by a wrecking ball of frustration.
I called my grandparents, and each of them took turns consoling me. They told me to come over and eat dinner and relax. Nowadays, these moments of sadness are few because this is my situation. My hands are extremely deformed now compared to that moment six years ago. I’ve learned to accept it and to keep my face toward the sunshine and not the shadows.