I used to wake up, get dressed, do my medical treatments (various nebulizers and lung exercises), and go straight from my dorm to my cold metal desk in my newspaper’s office to snag a couple hours of editing before the school/work day that often lasted 12 hours — a result of having three jobs and a full class schedule. I would polish off the day by doing homework while simultaneously completing more treatments. I felt like I should never let my disease hold me back from being productive and chasing my dreams. A day of rest felt like a day wasted.
Now, I wake up, take a long bath, and walk from my room to my couch or the rocking chair outside if it isn’t too chilly. I then plan out my day: when I should drink my tea, how much I should read for the day, which coffee shop I should visit, which show to watch, what my daily “outing” will be. Sometimes, I get a couple articles to copy edit for some magazines in Hawaii. Of course, there are medical treatments between all that. I’m in bed by 10, where I text or Facetime my goodnight to Kristina, then fall asleep praying. It’s a restful life despite how hard I’m physically fighting my disease, at least in comparison to my life half a year ago. And honestly, the restful life (even when I’m having fun) has been a lot harder, mentally, than my old life. It’s just been so hard to relax and not feel like I’m wasting time.
To better contrast “then” from “now”: a video by Mart Joshua Lopez for BCM. (Click here if video doesn’t work.)
At the time of the video, I was led by fear that if I took one pause in life, it would all go downhill and my future would be lost. I always had this nagging feeling that I needed to go faster, faster, faster. My past struggles with anxiety reflect that: feelings that, thanks to my disease, I might die faster than other people, so I should also live faster. For awhile, this whole transplant situation seemed to confirm those beliefs.
But then I met my surgeon on Thursday. A lot of our conversation was about risks and the reality of it all. I told her, “I trust you.” And I do. She turned to the numbers: the survival statistics (UCSF’s being the best), that being a male in my early 20s was ideal, that people with CF do really great with lung transplants compared to others. And then she said words I never thought I would hear from a medical professional: “I think you will have a very good lifespan.”
I know “lifespan” probably sounds cold and meaningless to you. But for a person with CF, it’s a really different term. Before, it was always “life expectancy.” Like I was some dairy product, counting down the days to expiration. “Life expectancy” made me form expectations from a young age: the expectation that I wouldn’t be able to start a family, the expectation that I might not even get my college degree, the expectation that ________. I had hope, but there was a voice in my head saying it was built on fantasy. I know there are loads of risks still, I know it’s all a gamble. But the surgeon’s words meant something. It has always been just me, family, and friends saying there was hope for a long life. To have a medical professional, one of the best in her field, give the same assurances… wow.
Since that talk, it has been so much easier to embrace the restful life. Before, I lived in fear that things would fall apart if I rested. Now, I rest because I am confident things are falling into place, that I’ll have time to pursue my dreams later. This doesn’t mean I’m being lazy and working less hard to take care of myself — I am spending more time than ever before doing medical treatments. The big difference is that I’m balancing those treatments with giving my body and mind rest. The 12-hour school/work days admittedly weren’t the best for my health. God is telling me to take in my surroundings, spend time thinking, be patient. Despite all the battles I’m going through, this feels like the sabbath of my life; a time to rest and learn from God, to prepare for the next season of my life, and — hopefully — many seasons after that.
“Six days you shall labor, but on the seventh day you shall rest; even during the plowing season and harvest you must rest.” — Exodus 34:21