This time last year, I was about to go on my not-FMLA. I had pre-written a blog post about how to protest with chronic illness for the Fourth of July, and – as that is a rather date-specific post – I went ahead and posted that.
But, while I certainly went to protests as best I was able to last year, I didn’t actually spend my Fourth of July at any protest. I was too emotionally frazzled by my own situation to do much of anything that day in 2018. We can just see the fireworks from the rooftop of our building. So, after a day spent frozen in fear, I finally went upstairs and watched those, at least. It wasn’t a perfect view, but it had the advantage of requiring zero spoons to get to. And, most importantly, it didn’t require getting anywhere early enough that I’d risk actually needing to use a restroom in a crowded area. Port-a-potties are not spoonie friendly. ‘Nuff said. Last Fourth of July was the absolute opposite of an “event” holiday for us.
But – as with just about any holiday in a big city – the Fourth of July could be an “event” if we want it to be. If my Partner and I ever want a close-up view of fireworks with a bathroom that won’t give me nightmares for days afterward, all we would need to do would be to shell out three times the normal amount of money for dinner at a chain restaurant near fireworks ground zero. Restaurants recognize the value of a front-row seat with AC and real bathrooms – and they charge accordingly! As with everything in America, even the free and “open to all” events are a little more “open to all” if we are willing to fork over the money to make them accessible for my chronic illness.
At this time last year, I genuinely didn’t know if we’d have any money left to “flush” to watch fireworks at one of those pay “as you go” restaurants in 2019. I honestly didn’t even know if we’d even be in the same city to watch the same one-quarter-of-the-fireworks-we-can-see-from-our-building again. I spent half of last year’s fireworks show in tears at my Partner’s “hopeful” comment, “Maybe next year we can save up for one of those overpriced chain restaurant meals to watch from just to celebrate that this year is finally behind us.” Thanks to C-PTSD and a bully-of-a-boss who had kicked me when I was already down, I was thoroughly convinced we wouldn’t ever again be safe enough to consider whether the cost was “worth it” in 2019.
Yet, we are still here. And, a month or so from now, I will finally be shed of that same bully-of-a-boss who caused so much of my dread last year. Rather than my worst fears coming true this summer, I am about to be rid of the last of the primary abuse contributors from last year. Yes, I’ll have to go back to a physical office. Yes, that will bring some new challenges. But, hopefully, my regular blog readers who have heard my bully-of-a-boss stories will understand why I’m choosing to prioritize mental spoons over physical ones this year.
Last year, I cried because it seemed like – for the umpteenth time – the 9th Circle of Hell was going to win. It seemed like – for the umpteenth time – the place of my birth that was never my home was going to prevent me from ever finding a real home or building a real life before its demons clawed it all away.
For once, that didn’t happen. For once, I got to assert some control over the kind of life I wanted to live, instead of being so driven by the need to stay employed at all costs just to survive and keep one jump ahead of Hell that I moved across the country and back – taking any well-paying job out of fear – instead of ever building an actual home. I am proud of how hard I worked – both last year and this year – to make that happen. I’m proud of how hard I worked to fight for the life I built out here when the 9th Circle of Hell threatened it.
But, please never think that any stability I have found for myself in 2019 amid the ashes of 2018 is because I somehow “pulled myself up by my bootstraps.” There was a lot of luck in the fact that I didn’t end up with my career destroyed by my horrible boss last year. There was a lot of luck in the fact that the American “safety net” that grinds the vulnerable under its heels didn’t drag my family down with it.
There was a lot of luck – and a lot of money to buy that luck – in the fact that we are still here in this same city this Fourth of July instead of being beaten down permanently by everything Hell threw at us last Fourth of July.
I’ve mentioned before just how much of last year’s salary I had to sacrifice – and fork over from savings after it wasn’t being replenished during my not-FMLA – to Hell to survive. I hate that fact. I also hate that if I hadn’t had that money to fork over, I wouldn’t have been able to fight the abuses we uncovered in the 9th Circle of Hell last year at all. I wouldn’t have been able to fund any sort of resolution from a system that didn’t – and doesn’t – care. I also hate that if I hadn’t been able to fight those abuses, that I wouldn’t have then been able to return to my job in time to placate my bully-of-a-boss and to keep earning more of the money that I will use to fight the system next time.
I hate that if I had lost my job in 2018, I’d have had a much harder time finding a new job in 2019. It’s much easier to get a job when you already have one (even a bad one.) I hate that if I didn’t have multiple degrees, I wouldn’t have been qualified for any job that paid enough to keep me safe in the first place. I hate that if I’d have had every childhood trauma I actually did experience plus just one more that I didn’t happen to experience – poverty – that I very likely wouldn’t have ever been able to flee from the 9th Circle of Hell via the route of education to earn those degrees in the first place. And, I hate that if, when I first became a guardian as a young adult, I hadn’t also inherited a life insurance policy because my parent was already middle class and had had a job that included a policy by default, then I probably wouldn’t have been able to finish at that elite school even after I got in anyway.
If I hadn’t had the escape valve of, “If I’m perfect enough, I’ll get into an elite school about as far as it is possible to get from the 9th Circle of Hell” – and the insurance payout to finish what I started – I could very likely have ended up choosing any other escape route that was available to me. I can’t fault those who do. I can’t fault anyone who believes their only avenues for escaping their own childhood demons are via drugs, via alcohol, via acting out, via gang involvement or via suicide. I can’t honestly say all the statistics don’t suggest those dreaded feelings of being trapped forever aren’t too often the true “American reality.”
Because everything I leveraged in 2018 to keep my family safe relied upon the almighty dollar, and my ability to earn that almighty dollar was mostly determined at the moment of my birth. That is what it means to be an American today. The zip code you are born in can take twenty years off your life while you are still in utero. In the 1940s, American children had a 90% chance of out-earning their parents. By the decade I was born, that chance was down to a coin’s flip. And, things will likely only be worse for any children my Partner and I might ever have. They will, most likely, only ever at most achieve the same economic class that my Partner and I have today.
So, it’s damn lucky that – although I have most of those Adverse Childhood Experiences that everyone is talking about these days – I don’t have that most adverse of adverse childhood experiences (that somehow didn’t even officially make the list!)
When I assumed guardianship of my sibling as a young adult, I was cast into a system that treats those who use its services as though they are moral degenerates who should be grateful for the mistreatment that is offered to them.
I have experienced first hand the demoralization of filing for SSI and Medicaid on my sibling’s behalf. (It’s impossible for even someone comfortably middle class like I am now to afford private care for a disabled individual in today’s America.) I have experienced firsthand the way the system treats any report of abuse or mistreatment in group homes or state hospitals that receive public funding (the only place that will take a disabled individual even with my sibling also on my family’s private insurance as well, mind you!).
I’ve set my clock by the annual rite that is my sibling’s benefits paperwork getting lost in the mail, the state claiming it couldn’t possibly be their fault and trying to claw back money they aren’t owed and/or cutting benefits, and the predictable resulting fight with Hell to then not suffer the consequences of their mistakes. I’ve helped catch SSI errors that affected 1500 hundred people – and that likely left most of them without crucial food or medicines for months because they were counting on checks that never came – and I’ve seen those same errors only ever be corrected for any of those 1500 people because my family happened to already have had the privileges of time, money and education to know how to document and correct the error. Because we had privilege, we could correct errors that are life and death for those without privilege.
I have also lived my entire life under the passive view – as well as the active statements made by strangers on the street judging my family (as though they had any right) – that, “If you are a drain on society, you deserve what you get.” I’ve been looked at as a “charity case” (by those who probably give less time or money to charities than I do in a given year). And, I’ve survived the system because I’ve always had a myriad of resources – most important among them money – to do so. And, now I’ll survive my bully-of-a-boss as well as Hell because I had those same privileges.
But, that same system in the 9th Circle of Hell that I’ve spent the entirety of my adult life fighting (and most of my childhood hiding my own traumas from to avoid its clutches) is the same system that the most economically vulnerable rely upon for daily survival. They have to fight the fights I fought in 2018 on a regular basis, and they don’t have the savings accounts I do. And, that is not okay.
It is not okay that because I wasn’t born poor, I can keep myself from becoming poor – and it sure as Hell isn’t okay that I can keep my sibling alive only because I have the money to do so.
That’s not okay, but that’s the “American Dream” that made me cry on a rooftop last year, and that offered me a new job this year. That’s the “American Dream” that makes me not know how to respond to my C-PTSD telling me I can never be safe because it has no safety net. My family is only as safe as I can afford to keep them. That is not okay. That’s not an American Dream. That’s an American Nightmare.
So much of my trauma narrative overlaps with the so-called “poverty narrative.” It has taught me that our view of poverty itself – that poverty itself – is a form of trauma. So is being disabled, being a person of color, or being a member of any other marginalized group in America. It has taught me that that pernicious attitude that “drains on society” “deserve what they get” is a form of trauma baked into even the simplest of events – like watching fireworks on Fourth of July.
And it’s only getting worse. We have children in cages on the borders. We have tanks in the streets in D.C. And, we have elderly and disabled individuals starving in Middle American Hells because we’re cutting SNAP and TANF and other safety nets that 70% of Americans will rely upon at some point in their lives and that give far more back to the economy than they cost.
I will admit, I spend a lot of money on experiences. Creating positive experiences to counteract the many traumatic ones I have had in my life has been foundational to preserving my mental health and to creating a life for myself beyond that which the 9th Circle of Hell would have afforded me. I couldn’t afford to travel last year because of what it cost to survive Hell, so I will appreciate traveling all the more this year, if at all possible. I will continue to travel over the holidays whenever I can. (I will also do my best to give back to create that safety net, too, because I’m not an asshole!)
And, yes, this Fourth of July is a lot better than last year. Yes, I’m relieved (albeit a little unconvinced it’s real because, hey, C-PTSD!) about having gotten a job offer in the same city. But, if you congratulate me, please please don’t say that I “deserved it.”
Yes, I “deserve” some happiness after last year, and I did work damn hard for that happiness. But, this is America. Deserving happiness and working damn hard to get it don’t ensure it. We seem to have forgotten those inalienable rights to life, liberty and the pursuit of happiness are supposed to apply to all Americans. “Deserving it” isn’t always enough in America. Far more people “deserve it” than ever “get it.” And, fundamentally, that’s because we think we have the right to judge who “deserves it” in the first place…
Even though my new job offer means I probably could have safely paid those inflated prices to sit somewhere close by the fireworks and eat a generic chain-restaurant meal in the AC with a bathroom to celebrate that it isn’t 2018 anymore, I found today that I didn’t actually want to. I still don’t particularly want to “celebrate” America in 2019. Just because I am currently safe doesn’t mean that many others aren’t. The same America that made me cry in fear in 2018 has only gotten worse for many in 2019.
The best way I can think of to celebrate America this year is with exactly that same activity that I was too frozen in dread to actually follow-through with last year.
Consider this post one of the various forms of protests that I will be engaging in to attempt to resurrect a real American Dream, now that I once again have ensured that I have preserved the level of privilege necessary to fight for those privileges for others.
Need a recap of anything I’m talking about in any post? Check out my Glossary of Terms.