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.