Welcome back!
The summer was far busier than I anticipated, strangely. But it was good! Nothing really earth shattering happened, so that’s a plus. I went to my youngest cousin’s wedding at the end of August, which was a lot of fun. My mom was up to visit us for about a month, and my dad came to visit for the last two weeks of her stay.
We all did so much cooking. So. Much. Cooking. Fantastic foods came out of my ridiculously small kitchen for weeks. My younger son started 6th grade, my elder son got a new job, which is teaching him a new skill set, and his fiance got a new job, as well.
We also got a new car earlier in the summer. Well, not new, but new to us, and also it’s only three years old. So that’s fun. What wasn’t fun is that we had to get it because our old car died on us. Whomp whomp. And, we had to buy it in the midst of the pandemic. Which, in case you may have missed some things, makes everything extraordinarily expensive.
I came to the conclusion that I can’t get a job. There are too many things that are inherently difficult about it. For one, we can’t afford another car. I mean we just got the one we have, I don’t have a license yet, either. I’m still working on it though. It’s just a bit of a process. I have to get my divided attention in better shape, and that takes time. I’ll be taking a driving class before I go for my license, as well, which I appreciate, as it’s been a really long time since I’ve driven anything anywhere at this point.
However, even when I do have a license, my husband and I are not too sure we want me to drive much on my own, as I still have the memory issues.
Not having my own car or driving my husband’s car by myself means not working.
I’m sad about that, of course, but also there is an element of relief. I’m not very good at doing the bare minimum to work, for instance. I would want to do too much, and I don’t have that kind of stamina anymore. While it’s getting a little better over time, it’s not likely to get back to what I had before the hemorrhage, and I wouldn’t be happy with that. I suppose, at some point. I might want to get a part time job, maybe cashiering, or maybe fielding phone calls. I’ve done both of those before, and know what they entail. They seem within my reach, as I said, on a part time basis. I don’t see myself taking on a full time job again.
Maybe that’s why I decided to write about this, I guess. There are several camps, political and otherwise, who think that people get declared disabled so that they don’t have to work anymore. I suppose some people do, but it’s a hell of a process to go through just to be able to stay home and veg all day. Plus, a bunch of people, like me, have extensive therapies to go to multiple days per week.
In addition to all this, I have met precisely no one in my life who has been declared disabled and does not wish to work.
I mean, think about it. We’re raised our entire lives to grow to teen years so we’re able to get a part time job to make our own money. Whether it’s babysitting or bussing, waitressing or watering gardens, Most people when we were in high school had jobs. I wasn’t actually allowed to work aside from babysitting until I was 17 and had graduated high school, but from then on, I had one (or more) jobs at a times until I had the stroke.
I don’t feel quite right not working. I feel like I’m leaving all the financial responsibility to my husband. He assures me that the payment I get from SSDI is extremely helpful. It’s not a mint’s worth, though. It just barely covers necessities for the month for the three of us, such as groceries, fuel for the car, medical supplies and meds. His checks cover the rest, such as rent and car payments, some of the subscriptions, and any of the fun.
I miss being able to buy fun, though. Have you ever thought about that? About the fact that you sometimes can’t buy fun for yourself?
I mean, we all do this. We buy things we want, as opposed to things we need. We buy desires, as opposed to dire equipment.
Most of the time when we have to not buy the fun things, we know that it’s temporary. It’s just for now, until we have more money available. I do shop sometimes, but I almost always have a purpose in mind. I have to not just buy things willy-nilly, because my monetary allowance isn’t all that huge.
I liked being the one to buy things like dinners, or lunches for myself sometimes, or even just a pair of shoes on occasion. Now, my husband has to buy all the fun, and it makes me sad. I feel like I don’t have the opportunity to spoil him at all. I do try to cook things he’ll like, but it’s nice to give someone a present for no reason.
Having to be closely budgeted is…frustrating.
And I’m not ungrateful for the payments I get, just…really underwhelmed by the rules that go along with it. See, the rules we have to abide by (and I understand that they are, in some way, necessary) seem literally devised to keep disabled people in poverty.
I wrote a whole explanation of what the numbers look like for us, and got paranoid halfway through. So I won’t be publishing that.
Suffice to say that the powers that be check in on us periodically to make sure we don’t have too much money.
Let me expound a second: So that we don’t have too much money for me to get help because of my disability.
So you see there are checks and balances. It’s to make sure people don’t cheat the system, I suppose.
Kind of reminds me of when I was in college, the second time around, and had to supply my mom’s monetary information because I was under 25. She wasn’t supporting me by this time, but I still had to provide her info, because what if she was?
So, I find myself in a similar position now.
Because other people have abused the system before (however, keep in mind that a solid majority of the people on disability need to be on disability), we have to live a certain way.
I don’t want to end this in some Pollyanna-esque “everything’s for the greater good and all we can do is keep living because isn’t that just the way things are supposed to be? Smile!” kind of thing. I think what I want to say is this: If you hear someone going off about “those fake disabled people using all the money and living the good life,” please quietly, but firmly remind them that by nature of the definition of the word “disabled,” we are classified as less-than by the government. Which we’re not. Also be sure to mention that we often have numerous doctor’s appointments per month and are often not able (oh, look, another way of saying disabled) to work anything more than a minimum wage job, and even that for only a limited amount of hours per week. If you have time and they haven’t just walked away from you mid sentence, you could also tell them I know precisely zero disabled people with beach front houses and indoor swimming pools.
Yes, I know it sounds a bit bitter. But if you’ve read this blog thus far, you know my humor is a little dry. I’m not bitter about all of those people. I’m a little bitter that I worked all of my adult life to be at this point now, but not as bitter as some might think.
After all, if it hadn’t been for the stroke, I wouldn’t have met a number of very good friends, I would (likely) still be suffering from debilitating migraines (which, just as a side note, you don’t usually get disability for), and I wouldn’t have thought to start writing this blog.
So, maybe a little Pollyanna. Not much.
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