We're living in a time where parody is becoming increasingly difficult to distinguish from reality. If I created a quiz with half made up headlines and half real headlines and asked you to pick out which is which, I bet most of you would fail. And I'll tell you what... I did not imagine that after everything I've survived and fought through that at somehow I would be sitting here in 2020 fearful that a rouge virus from halfway across the world might be my demise. Truly, I find this current turn of events to be utterly baffling. If this blog post seems like I'm writing it while I'm a bit frazzled then good, because I hope my tone is coming through via my words. Even though its been weeks since this new normal has descended onto the world, I have yet to wrap my mind around how nuts it all is. I cycle between feeling 1 of 100 different emotions on a daily basis, but they all circle back around to disbelief.
I think I share my sentiments with many of you who are reading this now. If you have any kind of chronic illness then you've likely lost a lot over the years: time, friendships, jobs, opportunities, etc. You've likely also had to fight through grueling treatments, isolation, and countless sleepless nights battling pain. Lord knows I have been through the depths of hell over the years, and the one thing that always kept me going was hope of a renewed life. Otherwise, why do we do it? We get up each day and face the hardships because we think perhaps this will be the day that things turn around and we can get back pieces of what we lost.
And I'll be honest, I'm the kind of person who always plays through various worst case scenarios in my brain because I like to be prepared. 99.9% of the time the worst case never happens, but at least I feel ready for whatever curveball life might throw my way. Trust me, I have thought about every nightmare situation that could pop up and derail my path to success. I've thought about what life might be like under a million random circumstances. However, the one thing I most certainly did not plan for was a global pandemic with a highly virulent virus that plays Russian Roulette with its victims. When I hear about even healthy robust adults who are dropping like flies (and no one knows why) it sends a chill down my spine. I'm no fan of viruses, but I am significantly less of a fan of unpredictable viruses with no known cure.
And yes, I know that my odds of beating COVID-19 are paper thin considering my immune system is operating with a skeleton crew over here, not to mention the fact that I've had lifelong asthma which I struggle to control on the best of days. I've been made abundantly aware of just how little the average American cares about us folks with pre-existing conditions when I hear them say, "Oh don't worry it's just those high risk patients who are dying." Yes, hi, hello, that's me, but please do carry on. With every sigh of relief that I see others have when the death toll includes only high risk patients and not any "normal healthy" patients, it sends a second chill down my spine. I get it, survival of the fittest and all that, but STILL.
I want to bring my sarcasm back around to some seriousness here. For most healthy Americans there is a light at the end of the tunnel. In the coming months the economy will open back up, and life will slowly resume again. But for those of us who are high risk, we are put on pause. Until... until when? Until a vaccine is developed in 2021? But who knows if it will even be safe for those of us who are much more susceptible to serious side-effects from vaccines. Okay, so then until a treatment is proven to be safe and effective for all, and enough doses are manufactured to be a viable option? And what happens until then, we stay locked in our homes living in fear of touching anything from the outside world or seeing friends who want to visit? Not to mention some people will lose their jobs because they can’t go in to the office safely. The only other option is to risk it and go back out into the world, but then we would quite literally be flipping a coin on our lives. I bet even a year ago a headline describing this very scenario would have been deemed parody, but yet here we are. It's a situation straight out of a poorly written movie script, but we're living it in real time.
If you can't tell, I'm frustrated. I'm frustrated because I can't believe I am in this position where I fought endlessly for the very life I have today, but all of it is hanging in the balance due to a mysterious virus we barely understand. No one can agree upon where it originated from, how it might mutate, how to treat it, do ventilators help or hurt, do certain drugs help or hurt, do genetics play a role, etc, etc ad nauseam.
I'm going to end this by saying that if you feel incredibly frustrated by the lack of answers for those of us with preexisting conditions then you're not alone. The very things most of us need to manage our illnesses such as blood work, scans, tests, nurses, home health, etc. are also the things which put us the most at risk. Walking into a hospital for any of the above or even having a nurse come to our home (after they have been in other patients homes), is terrifying. So many people will go without care, or tests, or answers, and that will stay paused for a length of time that is unknown. Many people will get sicker, have flares, and be left self managing their own care. This will go on until it's unsustainable, and at that point it becomes a high risk game of "do I try to stick it out, or do I go to the hospital and chance it?" Unsurprisingly, neither of those options sound particularly appealing to me.
I know this post has been sassier than usual, but my patience has run clear out. Whatever well I had used prior to sustain my level headed calm has been sucked bone dry, and now I'm just alternating between feeling mad and complete denial. The best part of my day is the first 2 minutes after I wake up when I'm not quite alert enough to remember the pandemic going on. Ahh yes, those sweet sweet 2 minutes of blissful naivety, how I cherish them so.
But let's end on a more hopeful note, shall we? When I'm feeling exceptionally bummed out I like to remind myself that just like this virus took us by surprise and upended all of our lives, it's also possible that it exits the same way. There could be an extremely successful treatment for everyone just around the corner that will stop this nightmare in its tracks. And that my friends is how I manage to sleep at night. I remind myself that in February I was living my day to day life blissfully unaware of what was to come in March or April. And so now I try to live blissfully aware of what might be in the pipeline this summer. Fingers and toes crossed. Until then...