So here we are, a new year, and to my great dismay, we are still dealing with Covid. It feels like a minute and a lifetime all at once. But I find myself quite conflicted, and this is why. I have witnessed bravery that mere words cannot possibly explain. The self-sacrifice, our medical professionals, emergency response personnel, teachers, service employees, all willing to do what was needed to keep our country going. What must they have within them, that drives them forward, putting themselves and their own loved ones at risk, in the name of service? It has truly been a marvel to witness.
I am not embarrassed to say, I do not think I could do it. My family has been fortunate, we do not need to work outside the home. We have not been financially impacted due to pandemic closures. We are all trying to stay safe, and act responsibly. I am so grateful for this. However, despite this relative safe haven, I am afraid…. gripped with bouts of anxiety. I suspect that I am in good company.
As I look out my living room window, I see Christmas decorations that my neighbor’s widow put up. N was my neighbor for almost 30 years, he was decidedly the nicest guy on the block. He was working in New Rochelle, NY during the first cluster in the spring of 2020. He contracted Covid and died. He was a healthy, vibrant husband and father, trying to make a living. Bad luck, sure. A victim of misinformation and minimization at the hands of an inept federal response, absolutely. But the end result is the same….this miserable disease took a husband and father in the blink of an eye. The horrific nature of this virus is not slowing down. But one thing is certain, as a community, surely we should all be willing to do whatever we can to stop the spread….and the deaths. Surely….
I recognize that one needs to adopt a particular mindset to prepare for life during a global pandemic. I suspect the goal here is to focus on the fact that, as excruciating as it may be, it is for the most part temporary. It will pass, and life will return to normal. The sacrifices we are making now will allow us to return to our pre-pandemic lives in the near future.
I actually shouldn’t say I suspect…..because I know a little bit about altering one’s life in the name of keeping others safe and well. Making a sacrifice now to reap the rewards later.
At this time I would like to advise everyone who I am about to offend, please take a number…..the line forms to the right. Now, let me read this disclaimer ” my experience with autism is my own, and is in no way representative of anyone else’s”.
Here goes….raising kids with severe autism has made me uniquely qualified to shed some light on restricting one’s lifestyle for the greater good. In this situation, the greater good are Gianna and Daniella, my 23-year-old twin daughters with severe autism.
Take it from me, pre-autism, I was a really fun girl. Ask anybody…they’ll tell you…..”Johanna, she likes a good time”. Going out to dinner several times a week, why not, a few drinks, sure, I’m in. Regularly scheduled vacations, usually to the Caribbean, every six months. Yup, that was me. But when my girls were diagnosed shortly before their second birthday, the fun stopped. But it was ok because I was taking one for the team. I was willing to do anything I needed to do…anything that would allow the girls to receive the care, therapy, and undivided attention they needed.
Going out to dinner is too anxiety-producing for my daughter, so we get take out instead. Having family over can be problematic, the questions and the spectacle that ensues is no fun….so we keep to ourselves. Traveling, yeah…not so much. So, you see, we can all be pandemic ready. After all, it was temporary, right? Now granted, my temporary has been going on for 23 years….but we are not talking about me now…..we are talking about you. And you know who you are.
As you can imagine, I have been watching all the news reports on Covid. I have always been a tv person, it drowned out the noise in my head…..and my kids….but mostly the noise in my head. Give me a minute while I get on my soapbox…..Ok, I have to say this…..there is a segment of our society that does not know the definition of sacrifice. I can remember watching a news report from the summer when the first lockdown was easing. This lovely southern lady was celebrating her ability to go get a manicure. “This is the happiest day of maaay liiiife.” In that instant, it took all my self-control not to throw my can of Lysol at the tv screen. Was it because I just spent 25 bucks on that can that just fell off the truck, or was it because people can be pretty stupid. Maybe it was a little of both.
A very smart person gave me some advice when I found myself struggling with my girls, and the way their autism affected our lives. I was expecting to get a pep talk, and in a way it was “Suck it up, Buttercup” was her advice. Leave it to V to cut to the chase. V ran my girls home program, and did not mince words. Did I want to hear it? NO. Was it the right advice? Absolutely. And over time I got very good at sucking……it up. OK, that did not come out right…. but you know what I mean.
And certainly, a necessary part of sucking it up is taking personal responsibility for your behavior, and importantly, how it affects others. As I write this, we just passed the Christmas Holiday, while suffering through a spike superimposed upon a spike from Thanksgiving. We were cautioned about this for months. You could not miss the ominous warnings, urging people to stay home, and not travel for the Thanksgiving holiday. But, for whatever reason, those warnings were not heeded. We saw news coverage showing airports full of people, knowingly engaging in behavior that could be considered reckless. Now, it is one thing to endanger yourself….have at it, but, when your behavior can affect innocent people, that is a very different story.
Why is it that many of us cannot make the decision to restrict ourselves in the short term? Granted, as a country, we have not experienced a tragedy of this magnitude in modern history. We are accustomed to living our lives unbridled. I can remember family visiting from Italy, they would always say “americani viziati”. Spoiled Americans. So many years later, I begin to understand what they meant. This unwillingness to play by the rules is troubling. A clear illustration of this shortfall is the ability for other countries, much less affluent or technologically advanced than us, being able to keep the infection rates low, and in some cases almost eradicating the virus entirely.
They did it by using good old-fashioned self-control. The ability to make due with less, teaches character and discipline. And discipline is what we all need right now. Perhaps having so much, for so long, has erased our ability to make due with less…..less going out to dinner…less going to the movies….less traveling. But now, less is more. At no other time has this been so true.
Infection rates are rising, as are death tolls. Reports confirm that we are reaching almost three hundred and eighty thousand deaths. That is breathtaking. The burdens on the medical system are increasing at an alarming rate. At no other time have personal responsibility and integrity been so warranted. Not every day can someone say that their behavior could save a life. That is not dramatics, that is a fact. Wearing a mask, staying home whenever possible, and socially distancing when you cannot, saves lives. And importantly, this responsible behavior lessens the burden on our hospitals.
As we usher in a new year, we are finding that the vaccination efforts are falling short of estimates, another failure that we cannot afford at this time. Now, perhaps if there was more time spent planning, and less time tweeting and undermining democracy, we might very well be in a different place. I do not think we will ever know. This, however, is clear. There is still much work to be done. We must act in a way that honors those who sacrificed so much. Never underestimate the value of a clear conscience. I never have.
So, as I glance out the window, and see my neighbor’s twinkling Christmas lights, I think it is the least I can do. If she can make the best of a horrific situation, surely we can all do our part.
Not to worry, I am proof positive, twenty three years deep in quarantine lifestyle, I am still a really fun girl…. in a dark morose kind of way….but definitely still a good time. And when the time is right, you will be too.
You can do this Buttercup. I have faith in you.
Johanna Cascione is a mom of adult twin daughters with severe autism, and a first time author of an autobiography – “Worn Like A Badge, Published under the moniker J. L. Verita.
After a career in the financial services industry, and a 10-year journey to have children, Johanna received the news that her twin daughters had severe autism. She experienced profound depression and anxiety. The diagnosis of her girls, especially in light of her struggle to have them, was almost too much for her to bear.
Ultimately she decided that the only way she could advocate for her daughters, was to become a stronger person, stronger than the fear that gripped her , stronger than the depression that paralyzed her, stronger than the diagnosis.
Her decision to replace the fear with hope, weakness with strength and the anger with kindness, was not an easy one, but she found it to be her only option. Her resolve to focus on hope, kindness and humor, especially when they were in short supply, served her well.
Today Johanna continues to advocate for her girls, as well as provide support for other families of individuals with autism. She has many stories to tell, from a life that was not at all what she expected. She is finding that her voice is one of honesty, hope, and yes…humor. Laughter heals the soul, and don’t we all need some of that.