Being disabled does not make me immoral

October 23, 2020

“Who came up with this system of the haves and the have-nots anyway?”
“That would be the haves.”

I can’t remember where I heard that, but it feels appropriate right now. That’s because I am frustrated not only by my lack of income, but especially by the scrutiny my measly income receives.

A few weeks ago, the New York Times broke a story that revealed Trump paid almost no taxes. Despite his huge amounts of money, he found ways around his obligations. Maybe the IRS took a close look at his taxes and determined it was all legitimate. Maybe not. Either way, he got away with it. And he’s far from the only one.

Meanwhile, I am receiving Social Security, housing, food, health insurance, and other benefits which allow me to sort of almost just about but not quite cover all of my basic bills. Of course, they don’t allow for “extras” like a vacation, big car repairs, a new used car when mine eventually bites the dust, or medical treatments that aren’t covered by insurance, and even without those things the money isn’t enough. So of course the solution is to try and earn money. Yet I am under such scrutiny that this is nearly impossible. And even without earning money, just living life is far too complicated because of the scrutiny.

The benefits cliff is not a new topic. It’s counter-intuitive to helping people get off of benefits. There’s an all-or-none setup that doesn’t work because my health is not all-or-none. Some months I can do more, some months less. Why should I be punished for that? But I digress.

I am not talking about the absurd benefits cliff itself, but about the intrusiveness of the entire setup. It is invasive and insulting.

I no longer have any financial privacy. Multiple benefits offices have me fill out detailed and intrusive forms. They look not only at my taxes, but also at my bank statements, including PayPal and Venmo. They question every deposit. For some, I am required to provide proof of the purpose of each deposit. When I can not show a cancelled check because my bank no longer provides these on bank statements, I must then pay to get them from the bank. When a friend gives me money, the office expects a notarized statement as to its purpose.

Seriously? I’m supposed to ask friends and others to notarize a statement about why they paid me?!? And about about strangers who send me $50 via PayPal or Venmo for buying some random thing that I’m selling? This is completely unrealistic, not to mention embarrassing! How exactly am I supposed to ask for this?

Example: “Do you remember how seven months ago I paid for that gift for Susan? And you know how you reimbursed me for your half the next day by Venmo? Could you give me a notarized statement that you weren’t paying me for anything but were just reimbursing me? I’d rather not say why.”

Yeah, right.

Then there’s actually trying to earn money. The limits for what I can earn without losing my disability benefits are really low – lower than my actual benefits. But long before I hit that number, there’s another number that’s scary: the one that triggers greater scrutiny from the government. Technically, reaching that number every month shouldn’t be a problem. After all, I wouldn’t be earning enough to get kicked off benefits. Still, we all know that the last thing we want is more attention here, especially these days, so I want to avoid getting anywhere near that number. Why give prying eyes more reason to examine me?

I am hugely resentful. Why can’t I simply try to earn as much as possible? Chances are I wouldn’t earn enough to get kicked off benefits (every time I have tried to work in recent years, I got a lot sicker and had to give up) but I would sure like to try and earn enough to buy some new clothes! And why can’t I simply live like a normal person who lays out the money for a shared birthday gift?

I get that the government wants to avoid fraud. They don’t want me getting benefits while also receiving $5000 per month from various friends and not reporting it on my taxes. But really, what are the odds of anything like that happening? Are there really going to be so many people on benefits who find a way to get enough money that doesn’t have to be reported on their taxes that it justifies this level of scrutiny? Would it really justify the salaries of the people paid for this scrutiny? Meanwhile, they make me explain that the $50 deposit into my checking account was a Chanukah gift from my aunt and no, I don’t wan to ask her for a notarized letter confirming that.

Now, let’s say someone was being deceptive. They received benefits they shouldn’t receive. The average SSDI payment for adults in 2020 is $1258 and the average SSI payments are $783 for an individual and $1175 for a couple. Meanwhile, we watch rich people and companies avoid paying millions of dollars in taxes. One rich person’s yearly taxes, if properly paid, would probably cover the lifetime disability benefits of quite a few people.

A lot of people find it unfair that they pay more in taxes than rich people do. I feel the same. But at the moment I am pissed that they get away with it while I need to justify every penny. Where is the scrutiny? I find it hard to believe the government couldn’t catch these folks if given the resources. Wouldn’t it make more sense to devote the salaries of staff to catch someone who owes millions, instead of focusing on disabled folks, the majority of whom are just trying their best to cover their bills?

A lot of people argue that the big difference is that disabled folks are living off of government benefits, so the government has to be sure that money isn’t being misspent. Uh huh. Tell me, do rich people not use government services? I’m pretty sure they use government infrastructure, their businesses benefit from people who attended public education, many of their businesses thrive because they pay such low wages that employees must use food stamps, and so much more. Many of them attended public school and some were even on food stamps themselves in the past. They benefit, even if their line is more squiggly than my direct one.

I am not suggesting that benefits should be handed out without any follow-up but maybe, just maybe, our current system goes absurdly overboard. I think we need a system where I can be reimbursed for laying out money for a birthday gift without having to jump through hoops.


Debating the line between private and public

April 27, 2019

Today I spent a while editing something I wrote that will be published in a book. Unlike this blog, though, it will be published under my real name. I have gotten so used to writing under Ms. Rants, that I’m feeling a bit confused about this.

In the past seven and a half years I have published 736 posts on this site – yikes! Before I looked it up just now, I guessed it was around 600. That’s a lot of writing, and a lot of posts, during which time I have gotten comfortable sharing a lot. I have spoken about strained relationships, deep fears, and incredibly embarrassing moments. Yes, I know that nothing online is ever completely anonymous, but it’s unlikely that someone will care enough to dig into this tiny little site that doesn’t even make any money to try and find the author, never mind actually make that information public. And if they did, what are the odds anyone would care? This book, on the other hand will be much more widely read, we think. My name will be out there and searchable. And that makes me question, what do I want to share?

This is a question we all make every day in a thousand tiny ways. Today I had to bring my car to the dealer for recall-related repair. What a pain in the butt. They said that at least I would get a voucher for free food from their cafe. This surprised me, and without thinking I said thanks, but that I couldn’t eat anything there because I have Celiac Disease. I didn’t have to say that. I could have said thank you and just left it at that. But I try to bring up Celiac Disease frequently as a way of educating people, and now it’s habit. I want people to hear about it in benign situations, where they don’t feel like “the whole gluten-free thing is blown out of proportion.” That way when they do hear someone requesting gluten-free food, maybe instead of judging that person as being “difficult” they will remember that Celiac is a real problem for real people and instead they might just have some compassion. No, I don’t expect to change minds with throw-away comments, but I figure if they hear it from multiple people, it could have an impact.

I often get asked why I wear knee braces, why I’m limping, or something else that is none of their business. How I answer depends on the person, the way they asked, and my mood. If I don’t feel well, they won’t get a nice answer. If I feel good and have time, and they seem nice and open, maybe I will explain a bit.

But these are all relatively anonymous. The car repair guy knew my name, but that’s just one person, to whom I told one small fact. Now I am considering telling a lot more of my story – my journey through symptoms, diagnosis, shitty doctors, supportive doctors, horrible insurance problems, and all the rest – and telling it to many more people. I don’t mention family or friends in the story, it’s just about me, so it is all my decision.

I always lean towards sharing more. I think we, all of us with chronic illness, will help each other the most by being honest. That is why I made this blog anonymous in the first place. By far the most popular posts on this blog are the ones I thought no one else would care about, and I worried about publishing them because they felt super private, but I did it. Every single time, the response was huge, with people thanking me for sharing because they could relate. So I want to be open and share.

But I am also aware of the world we live in. This is the world where I could get harassed for being on government benefits, put down for eating gluten-free, and generally maligned for being ill.

One day, a friend at my chronic pain support group came up to me and told me she liked my blog. I was confused. It turns out, she had read this site and recognized that it was me. I felt exposed. But this would be different. I would go into it openly, knowingly.

I will share a lot in my story. I will be open about many things. But as I read those words again this morning, I had to ask myself, just how open do I want to be? Because once it’s out there, in a book, there’s no taking it back. And while I want to use my situation to help others, there’s a line. I just wish I knew where it was.

Have any of you had to deal with this decision of how much to make public on a larger scale? How do you decide? Please comment below, because I’d love to know! And if you’ve had to deal with this decision (and I’m sure you have, because we all have!) I would love to hear about that too. How do you decide?


Reunion surprises

November 27, 2017

As so many people do this time of year, I recently went to my high school reunion. It was WEIRD! Of course, it was weird in the obvious ways (That person knows who I am? How could that person have forgotten me? Wow, she looks OLD! I don’t even remember him.) And then there were some chronic illness-related surprises. I thought I’d share a couple of them with you today.

First, there was my own perspective, which surprised the hell out of me. For the reunion 10 years ago, life was pretty good, if you didn’t count my complete inability to get into a healthy romantic relationship. But the rest was good. I was able to go to the reunion and talk about my good life.

Five years ago I was miserable. If you scroll through the archives for this blog, you’ll see that I was NOT doing well health-wise. That had a bit emotional impact, too. I was fighting to get disability benefits. I didn’t want them, but I needed them. Unfortunately, I was deemed “too healthy” for them. Fuck that shit. I felt horrible. I was house-bound multiple days every week. I didn’t think I had the energy for a reunion, and even if I did, what would I say? I wasn’t dating anyone, I wasn’t working, and the future felt bleak. Blah. I stayed home.

This year was different all around. First, I’m feeling well enough to attend a reunion! Ok, maybe not every day, but I rested up in advance and I managed it. I’m doing some very part time work, and when someone asked what I was doing for work, I mentioned that. There was no need to say it was part time. I talked about it like it was a full time job, because why waste time on details. This many years out of school, most of my classmates are married and have kids. I was one of the only ones who was unmarried. But I was ok with that. I mentioned to someone that I was writing a book, and when he asked about the topic, I said it was about chronic illness. I didn’t bring up my health stuff otherwise, and I didn’t dwell on it, but I also didn’t hide it.

I caught up with people and had a nice time. Because you see, I went into this reunion not trying to impress anyone. I didn’t care what they thought of me. Sure, there were a few people I wanted to reconnect with, but most I didn’t even bother to talk to because I didn’t care to find out what they’d been up to. If they asked me, then I answered, but I never worried about them judging me. For one thing, I figured most of them would be more worried about others judging them than about passing judgment. But also, what do I care what a bunch of people from high school think about me now?

My own attitude was perfect. It was freeing. And it shocked the hell out of me.

But there was another surprise. Over the years, I have become Facebook friends with a lot of former classmates. Facebook is weird. We’re not friends now, we weren’t friends then, but we’re connected and seeing things about each others’ lives. Go figure.

I write about a lot of stuff on Facebook: politics, cute dogs, crochet, my small business, and of course, chronic illness. Sometimes I share funny memes. Sometimes I share poignant blog posts. Other times it’s news articles. And occasionally, I write personal essays.

So I’m at the reunion, and this guy I wasn’t really friends with in high school, though we did share a few classes, came up to me. We’re Facebook friends now, but haven’t spoken to each other since the last reunion I attended, 10 years ago. He came up to me, looked me in the eye, and said he liked my writing about chronic pain. It got to him. Then he told me about a friend who was recently diagnosed with MS.

Of all the things I expected to happen at the reunion, that wasn’t one of them. This guy I didn’t really know told me that my writing about chronic pain had an impact on him. I was touched. And very surprised.

You see, we don’t know who will be impacted when we speak honestly about our situations. There’s a lot I don’t share on Facebook – they don’t need to know that I’m on food stamps or SSDI. They don’t need to know my embarrassing stories. But what I do share, I share honestly and from the heart.

This reunion was nothing like what I would have expected. It was fun and loud and interesting. And most surprising of all, my chronic illnesses were present, but not over-powering. That’s something that I hope to continue.


Health insurance should cover a bidet for anyone with a GI illness

September 21, 2014

Sometimes things get messy… down there. It happens. And when you have diarrhea on a regular basis, including explosive diarrhea, maybe it happens a bit more than healthy folks might expect.

As recent readers know, the last few weeks have been especially difficult for me. Still, I’ve been pushing through. I was doing ok, but the last few days have been incredibly rough.

And so I wasn’t feeling great this morning as I read my Facebook feed and slowly ate my breakfast. The stress was getting to me. I’d barely the last 3 nights. I was pretty sure I was all cried out…. at least until the funeral tomorrow. Who knows what that would bring. And how would I make it through the day? The funeral, sitting shiva, the long drives…. would I make it? I tried not to worry about getting over to be with the family again today, figuring I could rest all morning and afternoon and head over much later. I wouldn’t even get dressed, just stay in my pajamas until 3pm. I tried not to think about it. I tried not to think about how my grandfather looked when I visited him on his deathbed less than 48 hours ago. I tried not to think about the hell that my mother and her siblings were going through. I tried to remember the good times. And there were so many good times. I am endlessly thankful for that.

I sat there feeling pretty good emotionally, all things considered. I was hanging in there physically. I was doing ok. I was going to make it. And then instead of feeling gas released by a fart, I felt poop. Yes, I was pooping my pants. This has happened a couple of times before, but with all of my recent improvements GI-wise, I thought it wouldn’t happen again. But it did.

I bolted from the chair and ran for the bathroom. I took just a couple steps and realized the room was fuzzy. One part of my brain knew the problem, and of its own accord my hand reached up, pulled off my reading glasses, and threw them down. I never broke stride. I made it to the bathroom. Most of it ended up in the toilet. It was just liquid. I felt weaker than before, but I managed to wash out my favorite underwear (how unfortunate!) and my favorite fleece pants (just as unfortunate!) but my ass still wasn’t entirely clean. Things had gotten messy, and thanks to my joint problems in my hands, wrists, and shoulders, it was hard to clean up. Worse than what I usually have trouble cleaning up. So I got in the shower.

I stood in that shower for a long, long time. I hadn’t wanted to shower so early, or maybe even at all today. Showering takes so much energy, and that wasn’t energy that I had to spare. But what were my options? So I stood in that shower and thought, not for the first time, about how much I wish I had a bidet. I used one once when I was in Europe and I liked it. I’m pretty sure if I had one now, I’d be using it often. There are so many days when it would help, but few as bad as today.

We don’t talk about this kind of thing often. But a few weeks ago I was talking to a friend who also has GI problems and we talked about those uncertain farts, and how we can never be sure if they’ll really be farts, or if we’ll end up pooping our pants. I was relieved to hear I wasn’t the only one dealing with that, but sad for her that she has the same problem. And why shouldn’t we discuss it? Yesterday, after hearing about my grandfather’s death, I stood in the shower and cried – sobbed, actually – for ages. I felt my nose start to bleed, but I only stopped crying when I felt myself choking on the blood. By the time I got out of the shower I’d forgotten about my bloody nose until I brushed my teeth. I looked in the mirror and saw the blood dripping down. And I feel like I can talk about that, so why not talk about gastrointestinal problems?

So I’m throwing it out there right now, so all of my fellow CI-ers can remember that if you have similar problems, or maybe something entirely different that you find embarrassing, you’re not alone. We all have our stories. We might not talk about them publicly, but we have them.

And if you’re looking for a safe space to share your own otherwise-embarrassing stories, just post them here in the comments. I won’t judge. (And you can use an anonymous name if you want.) Remember, you’re among friends. And at least a few of them have pooped their pants.


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