“So right now we live on borrowed time, I don’t know how long or what is to come in the next few months.”
My sister Alyssa posted this sentence in a Facebook update when we learned that no options remained for her chronic rejection after a second lung transplant. She would pass away less than a month later.
I am active on the Big Four social media platforms: Twitter, Instagram, Snapchat, and Facebook. In a world where we are always logged on, always engaged with others in a way that magnifies our insecurities and causes us to manicure the image we project, how do we openly and honestly grieve? What if the person we are when we grieve is different than the person others know us to be?
Perhaps most people who know me would say I’m outgoing, outspoken, compassionate, and engaging. When I’m sad, anxious, or depressed, I want to be alone, and if I’m not alone, I want to be honest about my emotions without soliciting pity. I want those around me to be compassionate and understanding of how I’m feeling — I hope they can be patient. I hope I’m that way around others when they are struggling as well. How do we reconcile these emotional states that appear to be contradictory in a digital world where we are expected to always be engaged, active, and, frankly, happy?
Social media is the clichéd double-edged sword: It’s massively positive when used correctly, but probably equally as negative when used incorrectly. On a personal level, it could very well be the thing that simultaneously helps us maintain a connection to the dead while also preventing us from moving forward with grief healthily. I’m privileged with many digital reminders of my sister. Social media was a pillar of our relationship. Digital connections allowed us to FaceTime whenever she was hospitalized (so she could see her beloved Yorkie), maintain contact through Snapchat or Instagram, or joke post on each other’s Facebook walls. Because I went to college and was separated from my family for four years, social media was critical to maintaining the relationship we had.
I have had a fair amount of difficulties in my life living with a chronic, terminal disease while also watching my sister struggle with the very same, though in her case, the condition progressed more rapidly. I believe we are taught our most profound wisdom in the hardest of times, but sometimes the most profound wisdom is something simple pounded into our subconscious by the sheer devastation of sorrow, misery, and grief. Watching my sister struggle and subsequently die from the very disease that could end up stealing my last days taught me lessons I will likely never forget.
It took me until she was gone to realize how genuinely strong my sister was in the face of her mortality. But sometimes, the presence of social media numbs the pain of the hole she left. Her social media footprint is large, meaning I have quite a bit of material I can go through when I’m missing her. I have to consciously remember that I will never see her username pop up on Snapchat or Instagram again. I will never see her post on my Facebook wall for my birthday or for some random reason to pick on me. She will never text me again. Reconciling the pain that comes from such a deep digital footprint means reliving the ups and downs of her life vividly.
Both my sister and I considered it our responsibility to be open about our experiences with cystic fibrosis and her life with transplants. She had so many people keeping up with her and she wanted to be genuine about her experiences and her emotions. We both believed that honesty meant we could spread awareness about cystic fibrosis and organ donation in a way that would hopefully touch the lives of others. Alyssa indisputably did that with her social media presence. But how do my parents and I move forward when we have access to her digital life forever? How do we ensure we continue her legacy, but minimize the pain so we can go on, especially in a healthy way? Grief is an intimate personal experience for everybody, but the always-online world adds another dense layer to moving forward.
Follow along with Tré’s other writings on his humbly named site, www.trelarosa.com.
Note: Cystic Fibrosis News Today 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 Cystic Fibrosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.