Standing just beyond the entrance to my kitchen, the sun having long set, a dim glow illuminates the hallway from the bathroom behind me. I'm facing a wall that bisects the doorway to my darkened bedroom, and the opening to my living room. Not a single noise to be heard in these late night hours. Small narrow trails of light dance across my living room furniture, coming from the streetlight's attempt to sneak through my crooked plastic blinds. The edges of my couch, and reflection of light hitting the shiny marble tables, the lumpy curves of my blanket tossed over the couch back all hint that they are there.
I've had quite the day, I know now that I am too sick to go on and I quit my job yesterday for good. Today I laid in agony, the sun making it's way through different parts of the room as I lay rather lifeless on said couch. Today I was told it was okay if I moved home. I'm 20.
So I stand, in the dark now that the worst of the pain has passed, and I see this space for all that it really is. The home I've created for myself and filled with the start of little joys. I can feel all of the moment's spent learning to cook, the repetition in each morning's routine moving between the bathroom and kitchen to make my coffee and return to do my hair and makeup, and the melancholy that is overwhelming in knowing that despite my best effort this was all only temporary.
That come tomorrow it will be gone.
That come this time next week, the empty dark shadows will be full of boxes carefully packing up my life, and come another month, the rooms will be bare, my presence only a memory held by myself, as I find myself on the other side of the country taking on a new far less exciting journey.
I have stood in many a space with this same sentiment, that one day I was here and the next I will be gone and it'll only live on in old photographs if I remembered to take them.
I find myself now at the age of 26, and occasionally I find myself tracing the outlines of the space around me in the dark evening light with a slight sense of wonder. When will that next time come where it's time to move on?
I think this is a question myself and a lot of other chronically ill and disabled young adults find themselves rather stuck on. Maybe we ignore it. Maybe we choose to live exactly in the now, since we have such little control over the next. Or maybe, we dwell on it.
I find myself in one of the more privileged groups, someone who has familial support, stable housing, and who the Social Security process seemed designed for, making accessing disability payments rather simple and straightforward. I had stability before getting sick, and health insurance and supportive doctors along the way. And I think this precise culmination of factors is what creates this experience being in between.
So now I am in a place of relative comfort, my family is able to pay our bills in a house I'm able to live in for free, and outside of medical prescription costs and groceries all of my social security and the small earnings from my freelance work is essentially discretionary income. This is a very different experience than, well most people, whether they're sick or not.
When I first contemplated the idea of relocating with my parents back to Wisconsin after leaving just a few years earlier, one of my friends tried to offer some perspective. He said that I could always move back, that moving now would be temporary. That was somewhere around November or December of 2019.
I had in front of me at the time a choice, I could move in with a friend and very likely have to eat through my savings for a few years as I grew my business and did what I could in order to make money - knowing at that time that there still was no promising new migraine treatment where going back to a "before" where I could tolerate working full time was not an option. Or, I could move to a place with none of my supports with a promise of a house that had space for my own apartment/mother in law suite or what have you, thus also maintaining my health insurance.
At the time, I chose the first option, but a handful of choices outside of my control forced my hand and left me feeling far less secure in having someone to live with and stay in South Carolina. Which led me to follow the second option - one that in hindsight has proven to keep me far more safer and more secure during the pandemic than any roommate situation could have begun to offer had I stayed.
I clung onto the idea that it could be a temporary choice.
2020 went by.
2021 went by.
2022 went by... you get the point, here we are at the start of 2024 and now I look around and I simply can't believe it. My brand new couch, oh I bought that two years ago. Is my houseplant really on it's 3rd winter? My neighbor's Christmas card highlighted their kid's achievements, one of whom was just graduating high school when we got here and now they're graduating college.
I'm still here.
There are of course benefits to staying. Because of my father's military history, we have access to top quality military health insurance. I was approved as a disabled dependent when I first came home in 2018. We had to go through the review to prove I've remained a dependent in 2022. The next one will be in 2026.
Sustaining that dependency is one of the larger reasons to choose to stay as it means I don't have to pay for any copays, and they cover most of my prescriptions - critical to note that many of the covered ones are barely included in Medicare Part D plans.
But it brings up the question since I live with retired parents who also have fixed costs and fixed income, am I a dependent? Will I be a dependent in two years?
To everyone looking in on the outside the obvious answer seems to be yes because the sheer cost of rent is something I can't afford anywhere in the country on my own, and they provide a place to live. But the military's calculation is not as straightforward as that and the "cost to live on one's own" is not actually considered when considering dependency. My parent's costs however tip ever so slightly in their favor - as both my expenses and my income are taken into consideration - and I am consistently considered their dependent.
This causes the first problem, I could at some point not be their dependent. This would immediately strip me of my secondary health insurance, which again, covers my drugs.
The question then stands, is losing my health insurance enough of a reason to go off back on my own, back home, in the community I want to live in? Well, not really because again we established after food and medical expenses I still have a decent amount of discretionary income.
Thus, proving that even though health insurance is the most overwhelming factor, not having to pay rent in this economy is the one that matters.
That puts the tipping point someplace a bit more grim, my parents (old) will very likely have to 1) die or 2) go off to a nursing home, physically displacing me before the financial incentive of living rent free is no longer viable.
I've of course had these talks with my parents and other folks in my support system of the practicality of supporting myself should I simply choose to leave, or should time catch up with us and my time here runs out. Over the years, with the assistance of the backpay that Social Security provides based on when your disability began, vs when you began collecting, I have managed to build up a savings account. For a long while, this money could provide two things: a small plot of land, and a trailer to park it on.
No, no not a mobile home, but an actual pull it behind your car, would have to buy it used, trailer. That I could live in. I could own it outright, and I have a substantial amount of know how due to my career to fix it to be livable, and I could park it someplace warm, taking full advantage of the rest of the yard to have more... you know... livable square footage.
As more time has gone by and I've managed to save more money, the plan looks a little bit less like a trailer and more like one of those old (almost) falling down houses that are 100 years old that go for between $25,000 and $90,000 usually in very small towns or very rural parts of the country. Despite being sick, I do still have the know how to fix and rebuild a house, so unlike people with more fatigue based illnesses or who simply don't have construction knowledge, buying something that would require a lot of work is not only feasible but really opens up my opportunities.
The quality of said decrepit century home that I can acquire does totally depend on if my parents are still living.
But all these plans, they all have so many factors, and no real timeline. Should my dad pass away, I can move away freely while keeping my health insurance intact as it becomes permanent. Should they both be alive and well, I would be forfeiting my insurance and the entirety of the discretionary income I have now would go towards medical costs.
This is life in between.
I haven't wanted to live here since I got here, and although I strive to make my space enjoyable and to tend to my mental health so I can bare living here, there is a large emotional and mental impact in being here. I am constantly, daily, lusting after what the next chapter holds.
And surely, no one really in a solid frame of mind is going to choose to give up the comforts of the life I get to live today, for a totally unknown far less secure version of tomorrow when it is not being forced upon them. With the acknowledgement that each day, each month, each year that I can maintain where I am now, means that each part of what's next is just a little bit easier. I'd say "sick people that is" but with the way the world has shaped up the last few years, I know far more people beyond just those with debilitating illnesses are taking advantage of living with their parents or other family members.
But I know other people who are in similar situations. Where although the daily battle of taking care of ourselves, trying to maintain whatever health we can, and so on is the major part of our lives, there's that never ending question of where do we go from here? Where do we go when here is no longer an option? When have we overstayed? When can we simply no longer take the extreme isolation, the whole being an adult living with our parents, when do we just need out?
Our daily lives are an attempt to fill each moment with whatever repetition, until it's time to move on to what's next.
Of course, only those of us really deep in these in between spaces understand it. Our friends, they have jobs and fun lives and if they save up some money they can splurge on a fancy vacation, they can go to that playoff football game, or throw away money on various bets or temporary frivolities because they are not burdened by the inability to make that money back. If they quit their job and take off across the country burning through their savings having incredible experiences, they can land on their feet at a job when they've decided they're adventure has come to an end. But living in between before I got sick and before I can buy the stability for the future, well I just don't have that option. But our friends can't imagine that.
Even if they want to.
And so they talk about their future and my future like it's the same. Some even joke about the kind of stability those of us in between actually need, like combining resources with friends to own a home, with little consideration given back to us that we're actually being serious when we consider those things.
And maybe at this point everyone just feels bad for those of us in between.
Maybe we are a little helpless even if we aren't uncomfortable in our situation.
We can't go back. We can't decide to stay. But it isn't time to go yet.
So this is life. Life for now.
A cup of coffee in the morning. A trip up the hill to see the moon rise over the farmer's field. A new table to put my electric kettle closer to where I'll drink my tea. A cozy velvet shirt. A softly lit corner of my home, sun long set, light dancing off the reflections that will one day no longer be mine to see.
A.
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