“Just years ago, the internet was an escape from the real world. Now, the real world is an escape from the internet.”
If this quote from Noah Smith does not perfectly encapsulate the past year that has been, I don't know what phrasing would better accomplish that task. The past 13 to 14 months have been unexpected, unprecedented, and largely unforgiving. The fact that you are reading this blog post makes it overwhelming likely that you are an individual with CF, know an individual with CF, or work with individuals with CF, and thus the COVID-19 timeline has potentially been harder and more anxiety-inducing on you than most.
When an unknown, unstudied respiratory virus emerged on the scene across the globe, it was the kind of scenario CF nightmares are made of. The virus quickly spread and sent us all indoors -- away from our families and friends. Many of us worked online remotely, and FaceTime interactions and Zoom happy hours became the norm. I recall a neighbor predicting it would “be a few weeks” before life would return to normal, while others prognosticated that it may go on forever, with life never returning to normal.
One of the first things that pinged in my brain when all of this started was how I had heard (and lived) this story before; this was my CF diagnosis scenario from 1984 happening in real time in 2020. There were serious health risks and decisions at hand, and -- depending on who you asked -- the sky was falling and hope was gone. Or, certain lifestyle adjustments had to be made that would ensure vibrant and meaningful life would continue for yourself, those you love, and your fellow community members.
As a CF patient myself, the COVID life adjustment equated to an immediate transfer of all social contact, work hours, and entertainment activity to online platforms, and it happened with the speed of a bullet train. Relationships, professional productivity, and most mental health breaks became interfaced through the glow of screens. Big screens, small screens, lean screens, green screens … and how lucky are we to live in an age where this was possible, right? You could watch Netflix start to finish if you had the time, you could see the faces of your loved ones in earnest or covered in goofy Snapchat filters, or you could engage in group text threads and interact on social media to check on folks and let others know you are there, in return.
But screens don't just carry the faces of those we love, the shows we enjoy, and social media memes and filters that make us laugh. Screens carry political arguments, bullying, amplified anxiety, and bad news by the truckload. As CF patients, we have long known the vast, dual power of screens.
Ask any CF patient about CF support channels and groups available on the internet and they can give you a handful or more groups or accounts off the top of their head that either cultivate and encourage vibrant, meaningful life or, conversely, preach that the sky is falling and hope is gone.
When I was born with CF in 1984, screens were a simpler tool for which I had an unspoken contract with as I grew up. Screens kept me on the couch to complete my CF treatments via completing a level (or five) on Super Mario for original Nintendo, or Sonic the Hedgehog on Sega Genesis. Screens held me in one place for my parents' manual chest therapies as I watched Minnesota Twins games, hoping to witness a Kirby Puckett highlight play, live! A friend of mine from business school once told me over dinner that he absolutely hated video games until he heard me explain how they provided the distraction necessary to commit to CF treatments, day after day. Video games had led to healthy outcomes, for me.
Later in life, I had met no one with CF, nor had a conversation with another CF patient until the advent of social media. This coincided with my first post-college job, when I joined the Minnesota/Dakotas Chapter of the CF Foundation as a fundraiser in the summer of 2007. At that point, I was 23 years old and had never interacted with another CF patient. Screens allowed us to converse about our CF experience safely without risk of cross-infection, and let us share our stories with one another in a convenient way. Blog posts such as this one -- hosted by the Foundation or elsewhere -- allow CF patients from different countries and continents to educate one another and give insight to their CF care.
Yes, screens have tremendous upsides; but a bottomless downside is only ever a click or two away.
Negative outcomes for those living with CF still occur, despite the tremendous medical advancements and increases in life expectancy in recent years. There is the 50-year-old CF patient who has healthy lungs but severe depression related to CF factors; the 35-year-old who is waiting for the call for a double-lung transplant; and the 20 year old CF-er who is heading off to college with a port placement that they are uneasy about tending to in their dorm room. And, let's not forget the teenage CF patient who is hiding their enzymes in the couch cushions as an act of rebellion after a year of in-and-out hospitalizations.
Screens allow us all to connect and have our voices heard, but whether it's CF-related, COVID-related, politics-related, etc., the staining effect of exposing ourselves to too much bad news often carries significantly more weight than the good news we seek to help us win the day.
What does a screen mean?
Now, more than ever before, a screen is a tool that each of us uses, according to our own desires and disciplines, to seek out hope, laughter, love, and the good in the world -- or to indulge in the cynicism, frustration, and anger the world makes so readily available to us.
What I want from a screen is fun, laughter, and love. If it's not doing that, I'll close tabs and rise above.
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