The invisible killer is nothing new. Something that can’t be contained? I feel that. Not knowing if or when it will hit you? Every. Single. Day. Cystic fibrosis is a monster. And so is having a transplant.
There’s always an underlying fear of the untamable beast. Those of us with chronic illness have lived this reality our entire lives. It’s in our DNA (literally). We also know what to do when we can’t leave our houses, socialize, or be in public spaces.
I lived for many years in isolation. CF kept me leashed to oxygen, breathing treatments, or the couch for lack of breath more times than I can count. I learned early on how to take life at a slower pace because my health was directly affected if I tried to keep up with my peers.
Hospital life = life interrupted. Canceling plans, postponing activities, and rearranging schedules have been part of my “normal.” Wild Friday nights didn’t consist of bar hopping, getting drunk, or outrageous parties. My wild Friday nights consisted of hanging on the couch, eating popcorn pantsless, and watching rom-coms. Not much has changed with my lung transplant life except that now I prefer the latter and don’t suffer from a fear of missing out — or FOMO.
My thoughts are constantly filled with scales weighing risks versus costs. Masking up in stores has been part of my regular routine since I got new lungs. Cleaning carts and my hands after each visit. Stripping off my clothes as soon as I get home to avoid spreading germs to all surfaces and infecting myself. Sanitizing everything: my phone, doorknobs, debit card, etc. — these are just a few of the typical precautions taken with a suppressed immune system.
The masses have never had to live within these limits. Most of the population has never experienced isolation. And it shows.
But COVID-19 is at the next level, forcing a different intensity of isolation. I am not seeing any humans face to face. My loved ones are dropping food and medicine at my door. I’m sanitizing these items before they enter my home while wearing a mask. This is called social distancing. I know it looks different for my loves working in healthcare who are on the frontlines. Otherwise, all of you who are able to should be staying home, too. Nobody is immune. It doesn’t matter your age, religion, race, or health status — the coronavirus is knocking anyone it hits.
While on 55 liters of oxygen and fighting for my life before my transplant, I learned quickly that control is an illusion. When life feels out of control and the future is uncertain, we need to reign in our focus.
Here’s what I know: You are in control of your thoughts, words, actions, and reactions. Relinquishing the reigns of control for an unknown future to a known God was all I could do.
I hope the greatest lesson that comes out of this is that we know we’re not alone. Our actions affect others — those who are following directions with social distancing. And sadly, those who aren’t.
It’s never about you. You and I are not the only ones who inhabit the planet. If sacrificing our desires and staying away from social gatherings will alleviate suffering, then that’s what we need to do. For the greater good. Together. There is no “I” in “we.”
At our core, we are emotional beings made for relationships. Anxiety and fear of the future are normal. Isolation makes us crazy — confirmed. Figuring out creative coping skills is necessary for survival.
Think intentionally about what brings you peace — music, yoga, meditation, journaling, nature, talking with a loved one — and make a list. Refer to this in anxious moments. Reel in your thoughts. Nobody is promised tomorrow. Live in the present and prepare for the future. Cling to hope. Stay connected. Call someone (for the younger folks, that’s when you dial on your smartphones). FaceTime. Reach out. Nobody can read your mind or knows when you’re suffering in silence. And reach out to those who always check on you. Chances are they need it, too.
For so long our country and the world have been divided by differing beliefs. This isn’t the time to judge others. This is the time to pray silently for your neighbor, offer connection via technology, and come together as a community to do your part. It’s time to draw out the creativity within you to help others, keep your mental stability strong, and use this time for something good, not just cheap entertainment.
Realize what’s actually important: our lives. We need to come together to protect each other. Stripped of everything, we are all a part of the human race. Now let’s act like it by uniting in love and care for our neighbors.
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.
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