Essential

As I mentioned in my post on day six, my company is considered "essential" by the government, and as such, I'm required to continue working. Last week was EXTREMELY long, even with 2 full days of vacation. I'm still trying to recover from it, if I'm being honest.

However...I started back to work today, and I got to drink a hot cup of coffee before it got cold. I actually got dressed up (including putting on a bra!) and did my hair and makeup. I got to go home over my lunch break and not have people hanging on me. No one was screaming in my face or throwing things at me all.day.long.

Is it wrong to say that I'm grateful for being forced to go to work during a global pandemic?

I was so thankful to have gotten the childcare issues sorted out (hallelujah!) and I won't be breaking the bank to make it work (also hallelujah!). I'm not a loud voice, and I'm not a wave maker: That was Mark. Mark was the researcher: The one who looked through all the fine print and found the loopholes and did all the legwork behind it. I have always been the one to just sit back and accept whatever anyone told me. I did, however, stand up for myself this time, and I'm proud of myself about that! So...the kids all have safe places to be during the day, and ones where I'm not terribly worried about them contracting COVID-19. And well...I'm pretty sequestered in my little area at work, in which we have a door handle and surface cleaning schedule while production is down this week. We're making the very best of the evenings when we do get home, which is nice, and man - I can't be disappointed about the weather this week!

It's difficult being "essential". I feel essential to all the people all the time, not that I really want to be. Most of the time, I'd much prefer to not be essential to ANY of the people. I guess you could say I don't like being "needed", I'd rather be "wanted". I am just not one of those people who thrives on being needed. I like to do my own thing, and while I do enjoy being around people and being social, I thrive the very most in my own little bubble: Laying in my hammock on my own, eyes closed, listening to music or sitting in my chair at 5am doing my devotions or reading a book with JJ Heller playing softly in the background. I much prefer to not have the pressure of the things I do making or breaking anything: Whether that means an application I've developed for the assembly line or hard decisions about Mark or the kids. I much prefer decisions like, "What should we have for meals this week?" or "What color should this icon be?" instead of decisions like, "How do I effectively discipline my kids?" or "What do I do about the very real possibility that Mark could be so exasperating that all the 1:1 aides quit and I have to figure out what to do next?"

That last part is a very real reality. He has what I believe is called Echolalia, where he shouts very, very loudly at the top of his lungs regularly. It's irritating for me when he calls and just shouts the same things over and over at me on video chats, but for his 1:1 aides, he'll stand there shouting in their face for long periods of time, and they are just exasperated. It's unnerving, and I completely get that. So...we're trying to figure out what to do. His social worker called me yesterday to tell me how bad it has gotten for the aides, and so I gave her permission to discuss options with the nurse at Mark's facility so they could come up with some options. I tapped into my FTD Spouse support group as well and got some great recommendations: Things like a possible wax build up causing issues with him hearing, or perhaps an ear infection. See, with FTD, what happens as time goes on is that they can't recall how to express what they're feeling. So he might have an ear infection or a UTI, and his ear hurts really bad, and he just gets horribly frustrated because he can't figure out how to express that. I passed along these recommendations to his social worker to see if implementing any other ways to communicate with them might work. Like...perhaps him being able to write it down if he can't form the words verbally, or if he was able to create something in craft form perhaps?

I think often about how difficult it must be for him to be unable to express himself. Maybe it doesn't bother him at all, but I think back to something my Mom said during her battle with Parkinson's that really resonated with me, and scares me at the same time. She said that the hardest part about her battle with Parkinson's was her inability to write, and her inability to really sing, and since writing has always been her way to get out her emotions, it feels like it's all bottled up inside. (She has decades worth of journals to prove that.) Sometimes I wonder if that's how Mark feels too, even if this is a very different form of dementia (VERY different). Can you imagine if you felt love pounding out of your chest and you couldn't express that to the people around you? Could you imagine if you wanted to express how grateful you are but couldn't get those words out? Could you imagine if you were raging angry about something but couldn't get that out of your system? I cannot even fathom how hard that would be. Writing is my calming mechanism, the most effective way to de-stress for me. If I had that taken away, I truly believe I would be out of my mind.

I feel at a loss as to how to help Mark from afar. I've seen those pictures of loved ones sitting outside their loved ones' windows at facilities, and it guts me. See, I can't do that, or else Mark would be knocking people down to try to get out the door to get me. I can't go there. I can't calm him like I do. Even on video chat, he just seems agitated, and too overly excited. I've provided a plethora of photo books already, large 8x10 pictures for his photo divider, the portal for video chats, and so much more, but I still just feel like I'm falling completely flat on what else. I'm just not good at sitting back and resting. I have been emailing messages and pictures to his facility activities director who then prints them out and takes them to him. It feels good to be able to keep him updated on how the kids and I are doing. It still just feels...impersonal, I guess.

For me, being an "essential" person is overwhelming. I've always liked to be the cherry on top, not the bowl that holds the ice cream: It's a learning curve, to be sure. I think what made Mark and I's relationship work so well was that we were great at taking care of ourselves physically, mentally and spiritually, so what we contributed to our marriage was just the icing on top. We were able to pour out of our extra to each other as well as those around us, which blessed us tenfold. It was all abundance and excess, and it didn't feel like work at all.

Right now, I don't feel the abundance. Right now, I'm feeling the drudgery of building the base of everything. I feel like I'm digging out all the dirt for the basement of a structure by hand with a kids' plastic shovel; like I don't necessarily have all the right tools to do the job I've been tasked with doing. So being "essential" in this moment feels overwhelming. I know there will be a day when I'll look back and realize just how much I've done so far and how far I've come.

I was talking to my friend Sarah the other day about the whole "big picture vs. details" concept I've covered on here before, but in talking it out, I've realized that I'm kinda doing it all wrong. Maybe I DO need to look at the details when it comes to the future, but when it comes to the past, I need to broaden my horizons and see the bigger picture of where I've come. Each moment right now feels overwhelming and exhausting for the most part, but when I turn around and see where I've come from, I realize that I've not only come a very long ways so far, but also that I've made significant progress in my perspective as well.

Part of that has been my own doing, but a significant portion more of it has been the friends and family who have come alongside me to encourage me, to give advice, to help me figure out how to handle situations with the kids or with Mark or whatever it might be. I see now that while I FEEL like I've been picking at this pile of dirt with a plastic shovel, God was pulling out the big dogs and working right alongside me, and together, we've accomplished a LOT more than I really even realized.

In the meanwhile, I guess I'd better grow to accept being "essential".