How does one sum up 3 years’ worth of living in a T*ump hellscape? It seems that somewhere around November, 2017 I lost the will to blog.
We’ve survived long enough to see Joe Biden win the presidency, and Kamala Harris become the first female vice president. I’d love to breathe a huge sigh of relief, because this is a Big Fucking Deal, but there’s just so much leftover drama/trauma that it’s going to be awhile before we can really let our guard down.
So, for now I’ll simply say that I’m still here, the fam is still hanging in, and we have hope that things will begin to normalize soon.
It was August the last time I posted? Holy crap, I suck at this.
So, the costochondritis cleared up, we had the garage sale, and the dog’s hot spots healed.
That about catches me up. It’s November already, and it seemed like a great idea to crochet a bunch of blankets using yummy, thick blanket yarn. They are so heavy and wonderful when you’re using them, but they are so heavy and hard to manage when you’re crocheting them. I’ve made 4, and am almost finished with number 5, and have 3 more planned. The one I originally made for my husband to use while on the sofa was eventually rejected as “too narrow, and not long enough to tuck under my feet.” *sigh* It now resides on our daughter’s bed, and she loves it. Husband still wants a blanket, made with not only the same type of yarn, but also the same color. He’s now gone to the back of the blanket line. Take that, sucka.
There’s just been a lot of life happening; the mundane, and the miraculous. Things we can share publicly, and some that, for *reasons*, we can’t, but nothing bad, thank goodness. In a month, Grammy will be 103.5 years old. Mom took her to get her nails done today, which she does about once a month. A lovely couple we know adopted a beautiful baby boy, and we got to attend the baby shower. I inhaled the fountain of youth, straight from the source. Nothing in life is as wonderful as the back of an infant’s neck. Nothing.
I’m actually feeling a glimmer of hope for the future of this country again. Recent election results are very promising, and I can only hope that this is the beginning of the end for the current incarnation of the GOP. I don’t even know how we’ll survive another 3 years of Commander Marmalade and Cult 45. So, enough of that. Just thinking about him causes me to become vaguely nauseated.
My husband and daughter are both in bed, and I’ve been just sitting here, crocheting, and listening to the latest Pacific storm to blow into the valley. My mind tends to wander in such moments, touching on everything, and nothing. I compose and revise lists in my head, prioritizing which things must be done first, and strategizing how to make the most efficient use of my time and energy. I’ve been flaring a bit more than usual this year, and I’m worried that this may signal a reduction in efficacy of my current treatment regimen. I also let my husband wrangle me into making Thanksgiving dinner, and inviting his family. It’s not a big deal. We are very casual about holidays, and our entire group would only be 8 people, and probably 2 dogs.
Now that I’ve written down most of the muck clogging up the pipes in my brain, I think I can go to bed, and hopefully be asleep before midnight.
My desire to punch Nazis is at considerable odds with my very liberal, tree-hugging, tie-dyed upbringing. It’s not like I could actually punch anybody, not with these gimpy hands, but I find that I don’t have a problem with the idea of socking a fascist right in the nose. That may say as much about me as it does about them, I suppose, but I think it says more about my being just plain over ignoring them, pretending they don’t want to subjugate, or terminate, those they find inferior, and that they aren’t really a threat.
Make no mistake, what we saw in Charlottesville, VA is just the beginning. I fervently hope that all of this bold, new action on the part of white supremacists is the beginning of their downfall, but I’m afraid that they will be taking a lot of collateral damage with them before they are crammed back under their muddy little rocks. It’s too much to hope that they will ever be gone completely, but it would sure be nice to make them ashamed to show their faces.
I am a middle aged, white woman, whose ethnic background is best described as “people from places where the sun doesn’t shine.” Seriously…Ireland, Germany, Czechoslovakia. I’ve yet to have a DNA profile done, but I’m guessing the percentage of my ancestry that comes from places that make melanin is about 1%. White. My husband’s ancestry is similar, and we managed to create a child whose skin tone is best described as “alacasper.” She’s almost translucent. She doesn’t even tan. I mean, we live in Oregon, but we do have summers, and this kid just doesn’t seem to darken.
I live in a state with one of the lowest percentage of people of color in the country. When Oregon became part of the Union, in 1859, it was illegal for black people to live here. Not just to not own land, but to reside within its borders. That didn’t change until 1926. My grandmother was born here in 1914, so she remembers a time (yes, she’s still alive) when she had never seen a black person. My mother and I were also born here, and I have always loved Oregon, but being white, I had no idea that it wasn’t normal to have so few people of color in my community.
It was a blessing to me that my mother exposed us to all sorts of folks when we were kids. She never made disparaging remarks about the gay couples we saw at the park, and when we made friends with the black kids around the block, she made a point of getting to know their parents, just as she would with any of the families whose homes we spent time in. None of this was unique to me as a child. It was only as I matured that I realized how different my childhood might have been. It wasn’t until I was in my 30s that my grandmother wasn’t as open-minded as my mother. She had some regrettable terms for people of color, and my mom had some experiences while out in public with her that could have gone badly, because Grammy’s stage whisper wasn’t well filtered.
My state, and my country, have a long way to go. Portland, Oregon is the whitest big city in the country. The majority of brown skinned folks in the state are from south of the US border, and are either descendants of, or current, guest workers, upon whom we depend to bring in the millions of dollars of crops grown in the Willamette Valley. Black people are very rare, unfortunately. I can’t imagine how daunting it must be to be a POC moving to this area for the first time.
Of course, because of my privilege, I am ashamed to say I was not “woke” to much of Oregon’s history until far too late in my life. It is certainly not something we were taught in our history classes, or even in my daughter’s, but it should be. I am currently struggling with the need to stay informed, vs. the need to keep myself sane. I hate the thought of tuning out, which is a privileged thing to do, but I also recognize that because of other factors in my life, I may need to pull back from the 24 hour news cycle. Maybe cut down to 21 and see how it goes.
So, I don’t think I’ll be punching anybody in the near future, but I have to be honest and say, if the opportunity arose, and I were at an event were things got heated, I would probably be okay with holding the coat of someone else who would.
I’ve been staring at the bookmark for my blog for the last couple of weeks, and thinking I should be writing something, and it’s not like there’s nothing going on my life; there always is, and that might be part of the problem.
This morning, a friend shared a link on Facebook and the title of the post grabbed me by the face and dragged me into reading the article. I was immediately converted to the viewpoint of the author, because their post spoke to me on an almost visceral level. Here it is…
My God, can I relate. So, I guess this is your heads-up. I will probably be using this space to bitch, whine, moan and generally purge all the negative thoughts that I’ve spent years stuffing into a box, so that other people would be okay with me. Every time I say my life is hard in some way, somebody comes along and tells me that I should be grateful it’s not worse, that so many people don’t have the blessings I do in my life, that if I cultivate a positive pattern of thought, I can somehow improve my outlook on life, and therefore my circumstances will improve.
Talk about bullshit! I’ve tried it. For a long time. It doesn’t work, and I just feel worse about myself.
Progress is being made, but it feels like I’m walking through waist-high molasses much of the time. I can see what needs to be done, and I’m aware that I’m moving forward, but it feels like it’s taking for-fucking-ever, and nothing really seems to change.
I wake up tired each day, whether I’ve slept 6 hours or 8, and wonder if I’ll be able to accomplish anything of substance. Will I be able to motivate my daughter to get up and do anything? Anything at all? A bath, maybe? Empty the dishwasher? Get dressed? Sometimes I can tell right away that there’s not much point to prodding her, she’s just going to dig in her heels, and keep her ass planted in her chair.
This is not at all where I thought I’d be at this stage of my life. Of course, it’s not where I thought my daughter would be, either. None of us could foresee the shitstorm that epilepsy would unleash on our lives, how it would completely turn our lives inside out, and put a giant question mark on our entire family’s future.
Now that she’s 22, and we have a president who wants to gut insurance protections, and eliminate the ACA, we’ve gone forward with applying for Medicaid for our daughter. Our plan had been to keep her on our employer funded plan as long as possible, but we feel our hand has been forced, and we can’t take the chance that Rachel could be uninsured. So, she was approved for medicaid, which will be her secondary insurance, until/unless she losed other coverage, and then it becomes primary. That is, IF our esteemed leader doesn’t manage to gut the Medicaid program to the point that the state coverage is damaged.
Once again, it’s two steps forward, one step back. We try to do the right thing. We don’t want our daughter to be a drain on the taxpayers of our state, or our nation, but her well-being comes first. We continue to do what we can to help her move forward, hoping that someday she’ll able to care for herself, but trying to prepare the world around her for a future that includes Rachel needing state support and services. I can’t even imagine what would happen to her if her father and I were no longer here. We have family who would take her in, but they haven’t had direct care of her, so have no idea what it takes to keep all her appointments, meds, doctors, insurances, etc. straight.
I would love to have an income, but needing to be with Rachel all the time makes that almost impossible. I do sell on ebay and Bonanza, but it’s spotty, and I don’t always have the time to manage that as efficiently as I would need to, in order to actually make money at it. I also applied for the part time phone support job at Amazon, but after having the application accepted a couple of months ago, I haven’t heard anything else. I do wonder if I’d actually be able to manage more than a few hours a week at that, anyway, but it’s nice to dream.
Hell, I’d love to be able to go shopping by myself, when I want to, even in the middle of the week, without having to worry about leaving Rachel at home, which we can’t do for more than a quick trip to the neighborhood grocery, nevermind leaving her long enough for me to go clothes shopping. I have to save my shopping trips for the weekend, when the crowds are the worst, and even then I make the trip as short as possible, so I can get back home, and quietly resent my life. It sucks.
I wish I could laugh about all this stuff, but it’s just too immediate, and too huge. I miss the days when Rachel was still in school, and we felt like we had all kinds of time to help her become more independent. Now it’s starting to feel like she’ll never be able to live away from us, and we’ll all be stagnant together…forever.
So, that’s my uplifting thought pattern for today. I used to be such an optimist. Life is slowly, but steadily, beating that out of me. I miss that old me. I even put down the crochet projects I’d been enjoying so much. It might be time to just go pick it up again.
I bought this amazing coloring book; Curse And Color. It’s very therapeutic, and funny as hell. I have also purchased a box of 100 random postcards, and a big box of 48 colorful pens. I have lately alternated between coloring, and writing to our elected officials. I am trying to balance kudos with discontent, but there’s a LOT more discontent lately.
I’ve also learned that the Russian owners of Livejournal intend to enforce their policy of not allowing “promotion” of LGBTQ topics, so have moved all my entries from there to Dreamwidth. I hadn’t used Livejournal in several years, but was considering picking it back up when this happened. So, Dreamwidth it is. I like having a place like that, where I can share more intimate thoughts, with a very select group.
As much as I would love to truly be able to say “Zero Fucks Given,” I’m just not there yet.
In the glass pictured above is butterscotch schnapps, a/k/a buttershots. This is my new favorite nightcap. It’s sweet, mellow and warm, and tastes like those butterscotch discs we all know so well. This is a new treat to me, as I had never tried it until about 3 months ago. At that time, I poured a small amount for my husband to try, and his first response was, “It tastes like high school.” If I had to choose any taste with which to associate high school memories, it would not be butterscotch, but as it happens, Husband and friends would swipe whatever alcohol they could from one of their parents’ liquor cabinets and often it was butterscotch schnapps.
I was enjoying my drink last night, while reflecting on various events of the past week, and sorting them into the rather jumbled containers in my mind. I keep two somewhat active blogs; this one, and another on a different blogging site, which is used to chronicle my daughter’s life with epilepsy. It’s open to everyone in our life, and is a place outside Facebook where I can more freely express the emotions surrounding our journey. I do not feel that it is the place for me to share my political views, except as they would directly impact our daughter and her care. This blog is where I can let it all out; all the fear, all the angst, all the rage, and all the doubt. This is where I feel like my random, messy thoughts can be safely deposited, possibly for future reflection, but mostly just to get them out of my head.
This week’s jumble includes the many home improvement projects we’ve embarked upon, and their associated expenses, new carpet installation, the painting of a living room wall, the notary who is coming to witness the signing of the loan agreement that will pay for all this work, and so much more. The list of work that needs to be done is daunting. But it does need to be done, both for our comfort and safety, and if we hope to ever sell this place. Some of these are structural issues, which can’t be ignored.
Always in the background of my mind are concerns for my daughter. No matter what else is taking place, no matter the urgency of any given situation, her immediate needs take precedence. Any plan we might have for work done on the house, meetings with bankers, phone calls requiring our attention, will be altered, or dropped altogether, if our girl has a seizure or indicates a pending panic attack. Everything else falls away, and she becomes the focus of our energy and attention. If she needs to rest, all other activity either slows to a crawl, or comes to a full stop. If she’s napping in her room, I will make every effort to keep the house quiet, so she can rest well, and hopefully be able to handle some ruckus later in the day.
Is this frustrating, over the top, and annoying? Yup, sometimes. I have things I need to get done, and I want to get to them, and get my list pared down to a reasonable level, but if I try to push her to cope, it will often end poorly. So, I take a few deep breaths, put on my patient face, and work on whatever I can that requires a minimum of noise and movement. When I’m less irritated by life’s circumstances, I remember that she’s a gift, my precious only child, and she didn’t ask for any of this. Her life is predicted to have a shorter span than mine, and I live with a chronic autoimmune disorder. She could be gone between one breath and the next, and there would be no evidence of the cause of death. SUDEP is the boogeyman in our home, and we are ever vigilant. But, I digress.
Husband and I were talking about the work we’ve done so far, and what yet needs to take place, in which order, and when we’ll have the time and resources to get it done. The living room is complete except for some plaster work that needs to be patched, and perhaps the purchase of new drapes. It is currently our favorite room in the house, and has a peaceful, warm vibe to it, somewhat reminiscent of the beach. Warm, sandy tones in the carpet, furniture the color of faded driftwood, and a wall that almost mimics the color of beach grass. I want my home to be a haven, and this room is a good start.
I met my husband just two weeks after graduating from high school. That was almost 34 years ago. We’ve been married almost 30 years now, and I can safely say that there is no way in hell that 18 year old me would have been able to fathom the life we’ve lived, and all the shit we’ve been through. If that cute guy I met had handed me a book of the life we’d have together, would I have read it, laughed, and thrown it back in his face, or would I have accepted the challenge? I’m pretty sure I was stubborn enough, even then, to take up the gauntlet, pick up my sword, and charge into the fray.
My maternal grandmother is 102.5 years old. She is feisty, funny, and sometimes aggravating as hell. She is still quite mentally sharp, and lives in a retirement complex, where she cares for herself without much assistance. I have adored her all my life, but in November she really broke my heart.
Grammy has quite a bit of money invested in the stock market. This is money she has long planned to bequeath to her heirs, my mother and uncle. She sees no reason to go ahead and make any gifts before her death, even though it would mean that Mom and Uncle could avoid paying much of their inheritance in taxes. If Grammy could control that money from beyond the grave, she would. This is, by far, her most aggravating trait.
In the months leading up to the election, Grammy had assured me that she would not be voting for Trump. She wanted Bernie, and when he didn’t get the nomination, she become one of the Hillary-haters, and said she wouldn’t vote at all, as did my stepfather, who is also now on my shit list. My uncle started talking to Grammy about how under Trump her investments would increase, and that was all it took.
What hurts about this for me is that Grammy is well aware of the struggles my family experiences, due to my daughter’s disability, and her inability to work as a result. Daughter is now 22 years old, and though we are aware that she only has until age 26 on our insurance plan, we were looking toward her being able to receive Medicaid benefits at that time.That plan may now be out the window.
I saw Grammy yesterday when my family visited my Mom’s new rental home. She asked me what I thought of the new healthcare plan being proposed by the republicans. I told her that I believe it will hurt my family. She countered by saying that they are keeping two key provisions; coverage to age 26, and no preexisting conditions protection. I asked her what happens when my daughter ages out of our insurance coverage, and there’s no Medicaid because the funding to states has been slashed. She didn’t have an answer, but at least the stock market is doing well, and her investments are growing.
This is a woman who has seen my daughter have seizures, was at the hospital with us when we wondered if our little girl would live through the night, helped us scrounge up items for a huge garage sale, so we could earn the money to pay for a Vagus Nerve Stimulator implant, and gives my daughter $20-40 every time we see her, just because. She knows we are a single income family, with medical bills up the wazoo, and a fear of what the future holds for our child. But she voted Trump, in the hope of further enriching herself, even though it’s at the expense of our child, and others like her.
My stepfather also said he wasn’t voting, because he didn’t think Trump was a good idea, but in the end bought into the “God, guns, and country” bullshit. The only saving grace here is that we live in a very blue state, and their votes didn’t make much difference in the end. Still, it feels like such a betrayal, by two people who tell me they love me, ask worried questions about my daughter, say all the right things to my face, and then made a choice in leadership that can only hurt us.
This isn’t drama. This is my daughter’s life. Without insurance coverage, she will not be able to access the level of care necessary to keep her healthy. We own our home, though we have a couple of mortgages on it. Foreclosure and eviction take several months, so I supposes that’s one plan. Let’s hope it doesn’t come to that.
Not so long ago, and in this very galaxy, I silently mocked the people who talked about needing more firepower in order to protect themselves, in the event the government ever turned on its citizens. I’m not laughing anymore. I found myself wondering what we’d do if soldiers showed up at our door, and demanded we come with them. In reality, even though we do have a couple of weapons for home defense/target shooting, and I know how to use them, we wouldn’t stand a chance. The military has the really good stuff; airplanes, bombs, tanks, and vast numbers of people, armed to the teeth, and trained to follow orders without question.
I believe in a minimum level of emergency preparedness. We live in a seismically overdue region, and most folks expect us to experience The Big One (a magnitude 8-9 earthquake) any minute now. We’re encouraged to stock up on water, canned goods, medications, and first aid supplies, and have them ready to go in a bug-out kit. My family isn’t as prepared as we might be, but we’ve got the basics. We don’t have the family size underground bunker, or 5 years worth of food and water that I’ve seen on the prepper reality shows, but I also believed we’d be okay in the event of a natural disaster. I never really believed our own government could be the risk for which we may need to prepare.
There’s no bug-out plan for a white nationalist coup. Soon, even our closest neighbors will be wary of allowing US citizens to visit their countries. In our desperation, we may become the illegal immigrants who come for a vacation, and then stay forever, seeking asylum from our lunatic, despotic leader. I hope we get a kinder welcome than we’ve historically shown refugees in this country.
I have this fear, and yet I still can’t keep my snarky mouth shut, and can’t help but troll the president on Twitter when he says something asinine, which is just about every day. So now I keep one eye on the front window, and hope I don’t see men in black roll up in front of my house. If I were smart, I’d just hole up with my family, keep stocking up on emergency supplies, keep the passports up to date, and make sure the car’s gas tank is always full. It’s a 7 hour drive to the Canadian border. I’ll bet we could do it in 5.