We've completed nine weeks of quarantine.
My brother brought over a pizza from a new-to-us place. New York-style. Fantastic. We have a new place. Even Ro ate two pieces and she's been on some sort of eating strike lately--we had to call her pediatrician to get a plan, and turns out it's just about her will over our requests that she nourishes her body. I don't mean to sound flippant, but the absolute hardest thing about this lockdown has been what is hardest for me at any time in life: Meals. The planning, the shopping, the prepping, the cooking, the HAGGLING, the cleanup, the putting away, the sometimes a week of eating rejected leftovers instead of what I am in the mood to eat. My mother loves cooking. I'm sure having always come downstairs to an unexpected, delicious, steaming meal has spoiled me for life. There is no way I could ever live up to her standards, and that adds a layer of disappointment over my entire process.
Last week, my brother had a video visit with the folks at Mayo Clinic. At the beginning of this crappy year, his longtime cardiologist group (the ones covered by his insurance) essentially told him they didn't know what to do anymore. The words "heart and lung transplant" were used. I don't know how much of this I've explained here already, but I have so little time to post that I don't have time to check, let alone edit.
Basically his OG cardiologist group has gotten good at treating newborns and children for their heart defects now, but not enough of them have lived to the age of 37: They don't really know what to do about all the fallout that happens after they've done those interventions. The Glenn, The Fontan, stents, Gore-Tex patches. Revising entire vessel systems. That stuff saves lives. But the body does what the body does to survive, and doesn't always follow the plan. There are long-term effects like cirrhosis of the liver caused by decades of imbalanced blood flow, venous pressures so great at times that his leg will spew blood like a hose. Oxygen saturation percentages that top off at 81 (the rest of us are close to 100 all the time). Arteriovenous Malformations (AVMs).They put him under for a cardiac catheterization, during which the vein specialist was going to use the sedation time to adjust something to help his leg.
He was the last patient in the cath lab on a Friday night. What broke my heart was when he came to. His first questions were: "Did they do anything?" then almost immediately, "How much is this going to cost me?"
They did not. And probably a lot.
The surgeon scheduled to do his cath had been called away for a family emergency, and the one who took his place did not feel comfortable with the vein specialist being in the operating room, so that was not allowed. They were not able to repair anything, but did discover a myriad of AVMs all throughout his chest. He came out to the lobby (where I put a meeting a I was conducting remotely with 90 people on it on hold) to show me a video of it. I didn't really understand what I was seeing, but I got what his face was telling me. They don't know what to do and the only way to figure it out is to make educated guesses and try it out. On my brother.
So he requested a second opinion. And then a viral respiratory pandemic hit. I'm sure I don't have to spell out in detail what a death sentence this thing would be for a person with a heart defect and only one functioning lung. This poor guy hasn't been out of his house more than a handful of times for more than two months. He's going insane. And our mutual giant employer announced that for people who can work remotely, work from home has been extended through to the end of 2020. I was overjoyed: We don't know what school is going to look like for Ro. Hell, we don't even know where she will be going to school--I hope to high heaven that I don't have to try and teach her Kindergarten. I can't even get her to color with me for more than 20 minutes. My brother's reaction was more like despair.
Mayo talked to my brother on Cinco de Mayo. I forgot that the big appointment was that day and forgot to ask him about it. We had another giant fight about it, because he felt that it should have been important enough to me to write down in my calendar. I swore I had. But what he doesn't understand is a) I have a couple more things going on than remembering his appointments, such a full-time job I'm struggling to maintain focus for, two children under the age of six who cannot do anything but watch tv unassisted, and often come in begging, "but will you watch WITH me?" and the daily eating rollercoaster we ride at least six times (if you count snacks) a day. Thank God for H being a hands-on dad or I would have lost my damn mind years ago. And b) ADD.
My brother does not have an easy life by any means, but among his ailments is not ADD. He doesn't understand that remembering appointments/being on time is a hallmark problem for us, so me forgetting his appointments must mean I don't care. Um…what? The kicker to that conversation was that he wasn't ready to talk about it the day it happened, anyway. If I had remembered and asked, he would have been snippy and likely would have called me annoying for asking so many questions. So I'm basically the bad guy in any scenario. I'm the only guy, too, because he doesn't want to tell Mom and Dad what's going on. It was agreed that I'm just not going to ask anymore and he can divulge whatever he wants, at the time he wants to disclose it.
This is the main reason I have become vicious in my online commentary about this Covid 19 crisis. I have watched this kid suffer for almost 38 years, putting on a brave face to the world, missing out on things he can't do because of this condition. Not using it as an excuse for ANYTHING (dude has an awesome job and somehow was put in charge of a bunch of other people?) while he could have very easily sat at home collecting disability, or at the very least get a handicap license plate. Acquaintences don't even know about this. The statistics are very personal to me. When people say 1 in 100, I immediately think: But what if that one person was a giant piece of your life? Is it really just ONE if something happened to them?
My brother and I are going on a road trip to Minnesota in June for Mayo to do some tests (cardiac cath awake!). They will be trying to adjust his blood pressures with medication--a little blue pill that has been coopted by guys who need a boost in the bedroom, but was designed for cardiac patients. They also said they don't want to pursue surgery that hard because he only has a one-in-six chance of surviving the blood loss from being cut open on the table, no matter how much donated blood we make available. My husband is a lifesaver, whose only comment was "Let me know when, so I know to request off." This guy will be 24/7 with these children, and then possibly longer if I have to quarantine myself afterward. The logistical gymnastics of caring for two small kids by oneself is an amazing and invisible feat, not well appreciated by the childless, and sometimes forgotten by those whose own kids can wipe their own butts.
My father, who has taken to roaming about the countryside because he cannot bear to stay at home for more than an afternoon, likes to show up with mango juice or croissants or bananas for the children. I needed to do about two weeks of chores yesterday when I get a text saying "I am coming to your house." We had next to no food in the fridge because we were planning on cleaning it before doing the monthly giant shopping trip. I complained about this to my friends, who said "just make some sandwiches and take the kids outside while you talk to your dad." Lovely idea. I didn't want to pile on the whining by saying we don't have any of the "right" kind of bread left and crafting some kind of meal wasn't going to happen in the 20 minutes it'd take my dad to show up. So I warmed up a hodgepodge of leftovers packed it into a picnic basket, insulated bag and another bag, and made my father wait in the yard for several minutes while I tried to corral everything. H was helping me find things, like the picnic blanket and cutting up carrots, but he wasn't going to go out there. He did clean the fridge instead, though.
We visited with my dad for about 45 minutes. He was sitting on a lawn chair under a tree, sort of wearing a surgical mask (even though I gave them about six fabric ones I'd been stealing time from sleep and work and children to sew) and us on a blanket. He kept wanting to hold the children, so I had to gently remind him we need to stay apart, and that I'm not wearing a mask because I don't go to public places about forty times a week like he does. Thank God I had tomato soup left for him because of course he doesn't eat meat on Saturdays. Then he left, I played bubbles and chalk with the kids and they went back in, leaving me to clean everything up and bring it inside. All of my plans for the day were pretty much shot. I came away from that thinking, okay my dad saw the kids but didn't get to hold them. He had to eat day-old soup awkwardly in a lawn chair. The kids kept wanting to go in to the front and for me to chase them, and didn't want to stand still and entertain my father. But I had to do so and also try and eat, plus feed them one of the 15 items on the blanket. I was exhausted and enjoyed very little of the entire experience. Why do we do these things again?
I want nothing more than for my kids to be able to go back to school. For them and for us. Every single day we leave them to toys and iPads and streaming services to work, then try to take them outside and play after 5pm but it rains? That disappointment breaks off a chunk of me, just a teeny little bit, every single time. Add to that all the other disappointments: It's Week 9 and people who thought I'd have sent them some masks by now are disappointed. I've been at this job almost a year and may never ever know enough to feel as confident as I did at the last job--the one thing I felt I was excelling at. Everything is a battle. The children want to control something but we have to find away to get them to eat. My brother wants to control the information coming out about his condition, but I have to find a way to support him and not neglect the responsibilities in my own house while also pretending to our parents that all is A-OK. My employer thought it was totally cool to bring me in, give me jacked-up access, some assignments and a list of near strangers from which I could "ask anyone on the team" and basically leave me floating alone in a lake of mostly empty cubicles to try and figure it all out by herself. I just need a win. Somewhere.
Each week, Andrew Lloyd Webber makes a production of one of his shows available on YouTube for 48 hours. I think about 11 million people watched "Phantom of the Opera." We have streamed every week except the concert of songs and Ro was intrigued by Phantom (and its mediocre sequel, "Love Never Dies"). I think it appealed to her obsession with all things Halloween because of their birthday. This week? Cats.
Apparently it's the third-longest running show (the first is Phantom). I have never understood what the big deal was about Cats, and after the movie version got shellacked last year, I've been even more curious. So we gave it a try.
H was out from the jump. Kash was out after about 10 minutes. Ro kept asking "what are they doing, Mom?" "Now what are they doing?" I didn't know. Thank goodness I had googled the "plot" or I would have had no idea what was going on. By hour 1, Ro was out. The costumes were cool, the makeup was awesome, the singing was good, the dancing was impressive. But I didn't get it. There's a magic about live theater that simply doesn't translate on screen--I totally get that, and this is a great example. My main impression was "wow, that is a lot of cats" and imagined having to wrangle or get them to do anything at all.
And in light of my current situation, it seemed appropriate to spend two hours trying to make sense of the actions of twenty-some strange furry creatures, each with seemingly its own agenda; hard to follow, no clear plan, impossible to pin down. All the while wondering, "This? Is this it? Why does everyone love this but I don't get it? I'm sure I'm not doing it right."
When you're up when everyone else is asleep and you're home when they're all at work, it's a real quest to find answers to burning questions.
Sunday, May 17, 2020
Friday, May 01, 2020
six weeks tomorrow
Everyone keeps talking about “the new normal.” What does that even mean? I’m getting into online feuds with people in a mommy facebook group who live in Indiana and let their kids run around together in the neighborhood and think that there’s more danger in breathing “humid air” while wearing a mask than wearing one and trying to keep the numbers of infections from climbing. In New York city, they’re running out of room for the bodies. There aren’t enough refrigerated trailers and warehouses to hold them all. My friend Sol’s husband and children had to say their goodbyes and last rites to their uncle over Zoom (non-Covid cause of death). The family is being difficult about social distancing during the upcoming mass and burial. As if losing a brother isn’t hard enough. Nurses are being thanked for holding the iPad in one hand and the hand of a dying loved one in another so their family can be there when they pass. I cannot describe the raging fire of anger in my heart toward the people who think this is a conspiracy or made up by the media. Journalists are being furloughed, their pay cut, or simply being let go left and right, while people are so thirsty for information—and they NEED reliable sources. This is the kind of moment I’d always imagine having happened in the past that we were supposed to have learned from. Obviously we didn’t. The president is tweeting about all sorts of nonsense and looking for people to blame while having dropped the ball. Also denying statements made on camera. I’m so disheartened about society.
At home, my resolve is wearing thin. I hope I can find the patience to be kind to my children, who have been on some sort of bizarre hunger strike—even things they love, like “nani cereal” they are not eating. We are trying so very hard, but it feels like we are failing at everything.
It took me five weeks, but I made several pleated/tie-masks and got two rolls of stamps to try and mail them to our family and drop them to friends. I am disappointed in myself. I have seven boxes of fabric, not to mention two spools of twill tape (which I mailed to CC’s bff who is cranking out masks like nobody’s business). I just don’t have the TIME. H bought me this cool plexiglass/wood gadget to make holding the fabric down to rotary cut easier. I’ll admit, I wondered when he thought I was going to have time to use it, but dang has that thing come in handy. I have about 350 sets of masks measured out and cut up. I am making cotton straps and ironing them into bias tape—easily the most time-consuming pattern, but much more comfortable to me. Because of course that’s how I would do it. Hopefully I can get them made and to the people who need them, as Illinois has been requiring a mask to be out among the people starting today.
There just isn’t enough time in the day. The poor children are left to entertain themselves for long stretches of the day, while we desperately try to maintain focus to get the bare minimum done at work. I have never in my life looked forward to a weekend more desperately than I have for the last five weekends. Their schedule is out the window, flown through a woodchipper and scattered in the wind. Kash takes naps later in the evening (like 5-7:30 or 8p), which is nice for trying to cook/clean up the tornado of toys, but then he’s up till 1 or 2a. I have a daily meeting at 8:30a—thank God not on video—and we are HURTING. It’s like the guy spinning plates. But instead of being able to do it, we just let them fall and dig more plates out of the cupboard. Ro has started writing her S and N backward all of a sudden and does not want to practice. We are still paying Ms. A to try to get her through this until the government money comes through (no sign of it). She’s going to hold our spots and credit us when things open back up again. She is worried about losing her livelihood and even commented that she might consider cleaning people’s houses… Ms. A always has loved a flourish of drama.
My folks are still going into work. I worry so much for them. My mom works at the hospital and just masks up and sanitizes. Both she and my dad go to the store SO much more than H or I, who have only gone out four times in nearly six weeks. My brother can work from home but is losing his damn mind, alone in his big old house. He’s watching a lot of tv.
We don’t have time to do the basics, let alone watch all the “it” shows, like “Tiger King” on Netflix and God knows what else. I’m feeling a lot of FOMO about that. At some point, though, I have to just accept that I simply cannot do all the things. I have a lot of anxiety—there is chest tightness that has been coming and going since February and my monthly cycle has shortened quite a bit. My hair is falling out. I feel like a jerk complaining about any of this in light of people losing their livelihoodS and even their loved ones.
H’s employer has asked they take a PTO day once a week for at least the month of May (they, as my company, are hemorrhaging money despite being insanely busy because of the COVID-19 virus). Top brass are all taking 15-20% paycuts at both places (our CEO is taking a 50% cut, which still leaves him getting $5.5M, so I don’t feel too sad for him), and they’re going to cut nonessential workers’ pay gradually and let people go in the negative with their PTO. My significantly larger company lost $168M in the month of March. I’m having flashbacks of all my layoffs and panicking. Our plans to sell our house are on hold. I don’t know how the heck I would be able to online educate my kindergartener in the fall when I can’t even get her to practice writing her letters.
These are strange times, which I’m sure I will draw from for the rest of my life. I hope that I will look back and think “I did the best I could with what I had,” but likely it will be more like “dumbo, why you squander all of that precious time?”