As I’ve adapted to a life of chronic illness, key moments have broken my soul. These moments have refocused my view about life by pushing me past the definition of “normal” life circumstances. Scleroderma is constantly re-carving my comfort zone and placing me in situations that strengthen my emotional boundaries. The disease has taken parts of me away, but after recovering, I get to choose what fills the empty space left behind.
1. Experiencing my first scleroderma loss
When I first created the Scleroderma Strong Facebook page, I had a fresh mindset and the zeal needed for supporting other patients. One of the very first people to reach out to me was a woman named Annie. We messaged back and forth, and she vented to me about everything she was going through. She was bedridden in the hospital in complete organ failure. She experienced heart failure, but the doctors successfully resuscitated her. She felt as though she had another chance at life.
I tried to lift her spirits and encourage her to not give up and to set small goals for her future. One day, I went to message her and she wasn’t replying. I checked her Facebook page, and she had passed away. I wasn’t expecting it. This was the first time I had witnessed how scleroderma could take someone’s life. I was completely crushed. A waterfall of tears rushed down my cheeks as I read the details of her funeral. I felt terrible that I couldn’t save her.
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.
3. Treating a horrible ulcer
Ulcers are a common painful nuisance that many patients have to deal with. Last year, I had my first infected one. It was unlike any ulcer I had ever had and it kept oozing pus. The scab came off and revealed a bloody hole in my finger. It was around 10 p.m. and I started panicking in front of my family, which was a first for them.
My mom, who is a nurse, wrapped it with antibacterial ointment. I saw a hand specialist and he explained that I had granulated tissue in the space where the ulcer was trying to heal. He put silver nitrate in the wound, which killed the extra tissue (and burned like crazy) and gave me packets of Xeroform to wrap it.
This experience was very traumatic for me and I felt so defeated that scleroderma was still throwing curve balls at me when I thought I’d seen it all. But to my surprise, the ulcer healed very quickly. I was so grateful to see a doctor who knew exactly what it was and how to treat it. I also didn’t have to get it amputated, which is a big plus.
These moments were all a mere illusion, tricking me into thinking that I couldn’t overcome overwhelmingly difficult circumstances. But I had to choose what lessons to learn and not harbor hate, because the world needs more people who look on the bright side. People like me and you, beating the odds, every day we’re alive.
Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to scleroderma.