It’s hard to explain all the emotions a person suffering from a chronic illness goes through. At times it makes you feel sad, angry, and alone. At others it empowers you to be spontaneous, love deeper, and push yourself to set goals you want to fight to live for. Whichever mood your disease progression sets you in, this shortened lifespan forces you never to take a day or a moment for granted, to be grateful to be alive, and never forget what you went through to be where you are standing.
We all have moments that influence the direction of our lives, whether it’s one specific event, or a series of events. Our day-to-day experiences and interactions morph us into the people we are.
I have three distinct memories that have derailed my life from one track and set me on a complete other. When my disease overtook my lifestyle, when I received the gift of life, and when I suffered the most along the way from my “first” life to my “third.”
The first, the day my disease took over my “normal,” was really a sequence of weeks I spent in the hospital. A combination of becoming dependent on supplemental oxygen, receiving nutrition through a feeding tube, and was on the aid of others. The second was the day I received a double lung transplant. And the third was after losing my birth lungs after receiving my transplanted lungs. After six months with my new lungs, I woke up from being in a month-long coma — paralyzed, unable to speak, and unable to do anything without the complete help and trust of another human being. These life events all led me to dark places, no doubt, but they also shined a light on the things that bring me the most joy!
The word outlet refers to an opening or passage by which something is let out. I have come to observe three major groups of outlets for an individual whose life is isolated to some degree due to their disease. Community outlets include investments in things that bring one self-happiness. Creative outlets describe hobbies and/or activities that fill your heart and mind with passion and busyness. The last being therapeutic outlets, which provide calming and understanding through a traumatic experience.
The last four years my life have led me to stop working at my career, realizing that only I could successfully pass through the sickest period of my life with all three categories. It is surprisingly easy, due to guilt and heaviness, to wrap our brains around the emotions of others.
However, as a fighter of a disease who is always taking the physical and mental support out of our loved ones, we tend to forget about putting our own attention on our overall mental health. Multiple times a day we are pressured and even begin to demand perfection from ourselves to make the right choices over the wrong choices our healthcare providers steer us away from. We obsess over the second-to-second decisions we make for our physical well-being, while never spending time to reflect on our own emotions. Because of this our mental state often may endure chaos.
My point being, find hobbies and search to the ends of the Earth to brighten the light within yourself. For me it was a community outlet of conversations with other spoonies, and social media hangouts that brought me happiness. It was the force to emerge my creative side through painting, drawing, or DIY projects. Most importantly, it was setting aside the time for what allowed me to continue the toughest days and remind myself why I started the battle within the war.
So, write your feelings on paper. Keep them for yourself, or show someone else they are not alone, because in reality, we never are. There is, as my mother always says “someone who has it worse” and “someone who has it better.” Never take life too seriously, and pause to breathe deeply.
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.