I lie in bed at night and contemplate how long I can go without medications, without treatments, without the current support I am privileged enough to know. I do the math in my head and give myself a few variables. Given my relatively stable health today, if life-time caps and limits were reinstated I would reach the end of its given limit in a max of three or so years. And I feel like I am one of the lucky ones. Fellow friends with CF who are eligible for life-extending drugs such as Orkambi or Kalydeco (drugs alone costing $300,000 per year), would use up such lifetime limits within just a couple short years, maybe sooner.
There’s no doubt that these two words have shaped me into the person I am today – garnering a life of immeasurable gratitude and the most meaningful relationships. And for that alone I would not trade this life. I think about my friends facing the same uncertainty. I think about how none of us asked for this life, yet these two words seemingly measure our worth. I think of all of their loved ones, children, friends. Tears uncontrollably escape from my eyes and race down my face - their salty existence a cruel reminder of our imperfections.
What is the measure of your worth?