Terminal in the time of Covid

Covid truly has ruined everything. Even getting a terminal illness.

The most human thing people do, when they’re given a prospective date of expiration, is they want to make the most of the time they have. They don’t want to waste it sitting at home. They want to drink, travel, have new experiences. Well, that is made impossible when everything is shut down.

The other odd side effect is even if you manage to do something, people get up in arms about you “endangering lives” and not continuing to quarantine. They shame you for not doing what they’re doing.

They’re allowed to feel that way, but what if you are given 3 years left to live. Would these same people be cool with sitting inside their home, waiting until they die? And even if the person with this disease caught Covid, they’ve already been deemed terminal. It is quite the ethical conundrum.

My husband was diagnosed with ALS in the time of Covid. He has approximately 3-9 years left, depending on his progression. And even then, that’s just living. He could have 6 months to a few years remaining where he can walk and move around on his own. At some point he will be wheelchair bound. When that occurs is all up to the disease and entirely out of his hands.

True to natural human desire, he and I want him to live everyday like it’s his last. We want to make the most of the time he has left. Whatever that may look like.

This previous weekend we wanted to take a trip, somewhere, to kick of his “Farewell Tour,” as we have dubbed it. Knowing that things are closed made our options real slim. I thought about just doing a road trip, but fuck if even that isn’t super difficult. Every time we made a pit stop every restaurant had their bathrooms closed to the public. I wanted to scream.

Ultimately we decided to visit family in Arizona. It got us out of the house and gave us a destination that didn’t require us to make plans or wear masks. We did still isolate and just spent our time in their homes, drinking; which made things awkward. My aunt got really hammered and started hitting on my husband.

“Have you ever had sex with a woman?” she asked, as we swam in her pool, in between the times she kept playing with my husband’s feet.

In the sober hours she had no recollection, or chose to ignore it. Which I am all for. Liquor makes people do the dumbest shit. And, boy, was she drunk. My favorite part was her telling us repeatedly how she had designed the layout of her backyard. “I’ve never designed anything, and I designed this. Can you believe it?”

I love her.

For a couple days we got to pretend that my husband isn’t dying.

While we were in Arizona, we decided to take a detour over to the Mayo Clinic. We may be getting our second opinion from this particular campus, since the hub’s primary at Cedars is referring him there, to one of his colleagues who specializes in ALS. If he’s accepted, that could very well be where we spend a good chunk of our time.

Overall, it was a good weekend, even despite the challenges Covid creates. It’s just super shitty to try and live while the world and the disease dictate us to not.

Coming up Covid-19

Oh, COVID-19… how I hate it. Not because it has basically destroyed any semblance of an economy, or that it has revealed the true nature of every American over having to wear a mask, or how it has trapped all of us inside our homes with our insufferable families. No. It is because it has killed conversations. I am so over discussing it in passing or at length with anyone I may come into contact with. It’s a worn out topic that, frankly, no one has anything new to offer, and at this point we all sound like broken records. (Emphasis on the all, in that statement.)

The thing that humbles me when I start to feel the rage rising in me, in regards to Covid, is that every person in the world feels my pain. Granted we all experience it at different levels, but each of us has had shared moments.

I had written about that, some months back (the beautiful thing about the “Covid Experience” is it also kills any sense of or concept of lived time), and here I am to continue it. However, since then I, my mother, and my husband have contracted the potentially deadly disease.

Out of the three of us, each experience was very different. Even my own experience was so convoluted and bizarre it was almost like the sickness itself was trying to find out what it wanted to do.

Covid Cell 1: “Should we attack the lungs today?”

Covid Cell 2: “No. I hear the toes are really popping off though.”

My husband had the luxury of sleeping for four straight days. That isn’t hyperbole. He literally slept, morning to night, through his illness. I on the other-hand continued to work from home. Where each day was something entirely different.

The first day was full body aches with a stuffy nose (with no mucus), the next it decided to cause crazy pains at the back of my legs, the following it was just pain in my upper back, and then toward the end I just had a splitting headache that refused to go away. I never once experienced a fever, though one night I had the chills while sleeping, and a cough wasn’t really a factor in my illness that I find it odd we use these two things as bars for whether we have the disease or not.

However, I say that about a cough but it is because of that, that I even assumed my mother had contracted it from me.

I was hoping she hadn’t. It turned out that the day I started to feel some building symptoms, that my mother told me she needed to go to the emergency room. Her stomach was hurting her. As it turned out (like the last time I took her for the same thing) was that she had a UTI. Her urgency was expected but overall irritating because why then? And my husband couldn’t take her because he was for sure sick, and her caretaker couldn’t because I had her insurance information. So, it had to be me. I wore a mask the entire time I was with her and she still got it. And she survived.

The first thing my husband said when I told him she tested positive was, “Your mother is a horse.” And immediately following his statement was her caretaker who opined, “Your mother would have survived the black plague.”

It’s odd to me that my mother’s body is so healthy. She’s been overweight for all of my life, and she doesn’t have high blood pressure, heart disease, or diabetes. Nope. Her health is incredible, it’s just her brain that sucks. So it’s fitting that old age or external diseases wouldn’t be the things to potentially take her life; no, it has to be her own mind that ends it all. Strange.

Miraculously, the boyfriend didn’t get it. I don’t know how. He was hanging out in the house the first day the husband was sick. He did get sick, but his test came back negative.

I would think (and hope) that surviving something that could very well have killed me would spark some sort of urgency to finish my novel. Yet, here I am lacking any will to even peruse what I have finished. It sucks.

I have ultimately chocked it up to the belief I now feel, that there is no future. Like, I do believe life will march on. It will. It has for centuries. It will just look so very different once this is all over, if it ever ends. And in this brand new age, will my story even matter?

So, instead of writing about the new route I have decided to take in regards to my book (making it a limited serial audiobook podcast) I spent the entire post talking about Covid-19.

I told you… I hate what it’s done to conversations. And now blog posts.

Misery Loves Company

It occurred to me the other day that I have missed an opportunity with my blog to chronicle the entire expanse of my “Covid-19 Journey.” I could have begun with a post about how I was impressed/astounded/terrified of how quickly we went into lock-down, followed up by my hatred for working from home (and my subsequent desire to murder my spouse.) But in reality, what could I have added to the dialogue that wasn’t already being said by every mouth across the globe? There isn’t. We were all thinking and feeling the same thing, some more extreme than others (it would appear.)

I would like to say that I used this time to work on my novel, to finally get a polished draft to submit to agents, however in true “josh fashion” I became inexplicably obsessed with a video game that consumed all of my free time. To which I added two additional versions of said game (aka Animal Crossing) to my rotation. When I ran out of things to do in one variation I would jump to the other and so on. It’s been quite interesting. I can say with certainty that the original does still hold up, even though it lacks so many of the features that the most recent iteration possesses.

Even that aspect of the lock-down, was shared by so many of the gays on twitter. There was nothing exceptional or standout I experienced that warranted any sort of sharing on my part. And while I find that upsetting (my voice pitched at the level of everyone else) it also brought me some sort of joy.

Up until I wrote this post it didn’t even occur to me that for once in a great long while, all of us shared identical experiences. Well, identical might be a tad overstated, we did however have similar ones, and in that is a certain kind of magic. I think we get so caught up in this idea of the “self” that we can’t possibly imagine that we are never alone in our experiences. Yet, that isn’t true. It is why blog posts, articles, human interest pieces of people struggling with something do well, because it shows the world that we are connected somehow. Despite the fact that we are also so unique.

Just like everyone else, I ended up spending most of my time angry at the state of leadership; how it turned into a full on adventure just to go to the store for something as trivial as TOILET PAPER; being consumed with rage at having to work from home and the ever looming failure of technology to a remote computer; gaining a million pounds because working from home also allows for easy access to snacks; being obsessed over a televisions show or video game to take my mind off of the reality I am currently submerged; terrified I’m not going to be able to have enough funds to weather a lengthening of the shelter-in-place; and missing my usual haunts because they’re closed due to the possibility of contracting a very deadly disease.

Without a doubt in my heart, every person in this world shared, at least, one of those events.

This post was entirely too optimistic in the wake of the reality that so many people have died, and will continue to die, all because some fucked up politicians wanted to make a virus a partisan issue. It is humbling that I was one of the lucky who haven’t had any sort of agony accompanying my mild inconveniences. And the thing I find so frustrating is people protesting against wearing a mask or keeping themselves safe. Yet… even that is a shared experience. It’s just their “response” to these drastic/abrupt changes in normal life were VERY different than mine. (I comprehend the reality that my actions have consequences to people other than myself.)

Anyway… Stay safe, dear reader. Remember that you are not alone in the world. Someone is going through the same thing you are.