Long time, no blog. I know. Life has been having a locksocking, blanket party with me for the last 6-8 months. If I decide to stick around and write some more, I’ll fill you in. For now, only the subject of this essay matters.
We’ve reached a particularly dark anniversary in this country. You cannot escape it: it’s in the news, on social media, and the subject of lots of conversations. A year ago, the United States effectively shut down due to COVID-19. It was the right thing to do, the experts said. Having never experienced a pandemic – the last one of this magnitude was over 100 years ago – this was undiscovered territory for us all. Despite that fact, we tried to remain optimistic. We had top medical scientists who were on this, and our elected officials assured us that they would take care of us and that the virus would be brought under control. That proved to be our first mistake, but you don’t need a rehash of the rest. Over 520,000 deaths later, I think you’re aware.
The gravity of the pandemic situation was not lost on me from the very beginning, a year ago this week. I felt, right in my gut, that this country wasn’t prepared, based upon the federal government’s response early on. We “went to ground”: my husband, my brother, and me. It was crucially important: my brother was autistic and intellectually impaired, as I have noted in many blogs before, and he was seriously immunocompromised. He had an extraordinarily high tolerance to pain; a 10 for you might be a 2 for him. This was the guy who walked around and went about his business with a horrific case of Shingles once, taking only the occasional Tylenol. I worried that I would not know he was sick until it was critical.
It was pretty hard, right from the beginning; he had been so used to being a social creature, and I had to be quite firm with him to make him understand why he had to stay home. I may have chronicled his attempt to understand here; I’m too wiped out to look back. He took to using Facebook to hold live “Dance parties” to encourage and entertain his friends, because he desperately needed the human connection.
The months passed, and we would drive him to the bank when he needed money, and very occasionally, mask up with our pocket hand sanitizers, and get groceries. We were largely insulated in our rural, Pennsylvania county, until about October, when Covid began to spread from larger, metropolitan areas to our community. We mask-wearing, mandate-following people were also in a disproportionate minority, and we were harassed about it constantly. Super-spreader events, like Trump rallies and fundraisers at local VFWs and bars, did not help matters. There was nary a mask in sight at these gatherings, and as the case numbers rose and the deaths began happening, going out became both worrisome and an exercise in the most extreme measures of caution. We regretfully isolated my brother once again, during the most joyous, social time of the year. There would be no shopping or parties, no dancing, no family get-togethers. When the vaccines were released, we breathed a collective sigh of relief. My brother was terrified of needles, but on Christmas Eve, he went live on Facebook to talk about how excited he was to get his vaccine. It meant freedom for him, and not having to be afraid.
By 10:42am on December 28th, he was dead; his routine lab appointment on the 23rd is where we suspect he was exposed. He, in turn, exposed me, and I tested positive the day he died. My husband was negative, because he spent a large amount of time at work that weekend. My brother displayed barely a symptom: sniffles, some fatigue. That was it. That morning, he was basically unconscious; I roused him enough to test his blood sugar and he was able to respond to the paramedics. He coded enroute to the hospital, and his heart continued to stop every 5 minutes for 2 hours. His test was positive and his lungs were consumed. It was a horrific maelstrom of terror and confusion and sorrow. He did not have an advanced directive; I had to make the call. Who, at 45, has one? I felt my sanity bend and nearly snap. I have not been quite sane since. We did EVERYTHING right. And we were so close.
Everyone else has moved on. That is expected, after all. If it were me, responding to the death of a friend’s brother, I would have gone back to my routines and my life, too. The outpouring of love, kindness, and the hundreds of condolences bore me aloft, in those first bleak days, upon a soft cloud of compassion. I had a core group of friends around me for those first horrible weeks, but most of them have faded back into the woodwork of their lives, and I am pretty sure that many of them actively avoid me because I am such a downer. I don’t blame them at all; I cannot stand myself 95% of the time. That 5% that I can stand is who I am when Goose makes me laugh. Thankfully, he does that every day.
I spent the first few weeks bewildered, in shock, and sick. Now, the grief feels very fresh and yet, the lessons I have learned in therapy – to reach out, to trust that those who said they were here for me meant it – well, I’m failing those lessons because I don’t want to bother anyone. And the brain fog, a lingering symptom that won’t abate, keeps me from talking much, because I sound like a stumbling idiot who forgets words and even whole phrases and who has to look up words to write sentences. It’s fucking embarassing for me, a writer who has always had the wonderful world of vocabulary at her fingertips.
I have to put a timer on to remind me that food is cooking, because dinner has burned one too many times; I completely forgot that I was cooking it. Laundry gets started, but then forgotten until 2 days later. I have things I want to tell people, but then, a week goes by, and I remember, and it’s no longer relevant. It’s terrifying and it also feels like a penance to be endured until all the wrongs in my life, ending with my brother’s death, are righted.
I received my second vaccination on Tuesday. It was a watershed moment. The trauma of the day Covid stole my brother from me lives on in my memory, refusing to dissipate. 2021 began, for me, with illness and a broken heart and a soul filled with rage. It began in isolation, with no comfort, or even a hug, for two weeks. Even now, I have had exactly one repeat visitor since December. I mean, I get it. I absolutely understand. I had the plague, and I am an open wound now. It’s best to avoid me. And I still don’t know how I feel about a total immersion back into daily life. I had no closure; my baby brother – who I swore an oath to protect when he was born when I was 8, and who loved and trusted me the most in the world, who I was rarely apart from – died alone, amongst strangers. I feel so hopelessly bereft when I think that he must have been so frightened, and that he must have wondered where his big sister was and why she had abandoned him to a reality of agony as he died, over and over. The thought of this haunts me nearly every moment of the day. I wasn’t allowed to hold his hand, or kiss his forehead.
Very few people really understand the bond between my brother and I. I was his sister, and I was also a maternal figure. We didn’t have much, growing up, but we had each other, and I can say, without any doubt, that I was the most important person in his life, and the one he loved the most. I felt the same way, that first, magical moment that I held him and counted his 5 day-old toes and wondered at the strength of his grip around my finger. It is almost like losing my own child. To a virus that could have, should have, been mitigated.
The very last contact I had with him that morning was to rub his arm, stroke his forehead, and say, “Charlie….buddy?…you’re gonna go for a ride in the ambulance, but everything’s gonna be okay.” This beautiful soul, the heart of my heart, went into the darkness not cradled by love and comfort, but by fear and violence and pain. There is no escape from this nightmare, except to join him. And yet, I know that’s my grief talking, and so I have my therapy appointments and I take my meds like an obedient child. I don’t want to join him. But I feel nothing. No joy. No hope. I feel gray. This is not depression, and it is not a symptom of my mental illness. It isn’t even a part of the PTSD that I have recently been diagnosed with; this is no shell shock. It is something deeper and darker than any sorrow that I have ever experienced. And I wonder if this is all there is. Because if it is, it is not acceptable or survivable; not for me. And it is unfair to the people who love me.
So, I don’t reach out, even when the sobs erupt from the black pit that is my center and I sink into a quiet despair, and wonder if anyone can tell that I’m dead inside. I hope not; I try to mask it. Who would want to have to deal with that kind of negativity? Not me. So I don’t bother with doing that to them. But, it is very lonely.
I am also very angry, and I would gladly see the world burn when my thoughts are blackest. I have survived COVID-19, but the unnecessary loss of my brother, who was absolutely the best of my mother’s two children, may be the thing that takes me down. I don’t want it to, but no one has come up with a plausible scenario where the sun shines and the wind blows through my hair and I think, life is beautiful – and I feel it. Everyone assures me that a day will come when I laugh more than I cry, that I will remember all the good without the horror of that day crashing through my consciousness. They promise me that there will be peace.
And so, I’m waiting.