My Accessible Shower

My Accessible Shower

The accessible shower is in! If you get updates on GoFundMe, you likely already know this. But. I. Am. So. Excited. I had to post about it again.

The framing is—as far as I can tell from the pictures Mom sent—complete for the rest of the living space too.

I know this may not look like much now, but I look at it and all I see is the ability to take a shower again without fearing for my life. It took a brain tumor for me to understand what disability and accessibility really meant. But there’s a reason I posted about just the drain a little while ago. And it’s because now I know.

That’s why I talk about it so much. You don’t realize how abled the world is unless you are disabled or you know someone who is. And not, like, “Oh, my co-worker needs to use the elevator.” More like, “Holy shit. The plan is for wheelchair users just to park on the stairwell landing during a fire? People are OK with that? Seriously!?”

Related: I was watching a renovation on HGTV where the new homeowners wanted Chip and Jo to remove one of those walk-in bathtubs and I was screaming internally. “Those are so expensive! How do they know they won’t need that next week?!”

I don’t remember if the fixture got trashed or what. But I hope like hell it could be salvaged and donated to someone who needed it. Because the irony of disability is how little money you’re allowed to have and how much more everything you need costs. I’ve needed one for OVER. FIVE. YEARS. And that’s just counting from my official diagnosis.

(We all know diagnosis was an entire other thing. Unless you’re new here. In which case, welcome. Let me introduce you to my medical baggage.)

Finally, I just want to say I know what a privilege it is to have an accessible shower like this. And I am so grateful. If you have an opportunity to advocate for people like me, I hope you will. The upside is that what disabled people need is usually extra convenient for the abled world. (Ramps, ready-made meals, pre-sliced fruit. You get the idea.)

That’s all for now. Happy Wednesday. And thanks for being a part of this wild ride.

About My Disability Case Against Lincoln Financial Group

About My Disability Case Against Lincoln Financial Group

The legal assistant assigned to my disability case against Lincoln Financial Group called me at the end of last week. She said they just needed a couple of signatures from Dan and me and a copy of my SSDI award letter. Then they’d be ready to ship off the entire appeal. This month is the deadline.

She gave me a quick rundown of everything they are submitting with my file, and—whatever LFG decides on this second appeal—I feel better just knowing there are people out there to push back against the insurance company’s lies and the lies of the doctors, like Samuels and Hartner, who shill for them.

It’s also been really nice not getting any emails or phone calls from the claims specialists that work for LFG since I found legal representation. I don’t know how employees like Ann and Sherry can do what they do to people in my situation. HR at Lincoln Financial must offer certified empathy extraction benefits along with vision and dental.

One thing the disability attorney managed to nail down was a sworn statement from my neuro-oncologist at Barnes-Jewish. “It’s going to be submitted as additional documentation after the deadline,” the legal assistant explained. “But he’s been out of the country for a while, so our hands were kind of tied.”

I’m stunned. Absolutely stunned that they are getting this from Dr. A. He’s good at the cancer stuff, but kind of impossible to pin down. I’d say 95% of my interactions with his office, including treatment and follow-up visits, at the cancer center have been with his NP, his nurses, and his office coordinator. I know that’s normal, but it’s far from ideal—even when you’re not fighting insurance.

Anyway, I asked the legal assistant how much time Lincoln Financial had to reach a decision on the appeal. I couldn’t remember. The answer is 45 days from the date of submission, but with a caveat. Since the sworn statement from Dr. A will be arriving later, LFG may request more time to review the additional evidence and it could be up to 90 days before I hear anything.

“Lincoln isn’t bad for missing deadlines—some other companies we deal with are terrible—but we’ll file a formal ERISA complaint if we don’t hear from them by their deadline,” the legal assistant said.

Do I think LFG will take another 45 days just to review one statement from my doctor? Yes. Yes, I do. Every day they don’t pay a claimant is another day they can earn interest on the stockpiles of cash they make from hoarding money that is supposed to be disbursed to disabled policyholders but isn’t.

My dad, who has always been really good at money, doesn’t pay his bills too soon before the due date for this same reason. “It’s silly to pay the bill as soon as I get it when that money could be making me more money,” he says.

The huge difference of course being that Dad isn’t holding someone else’s money. If he were doing what LFG is doing, we’d all be calling it theft.

Something to keep in mind, because the process for appealing cancelled disability claims is so stinking confusing, is that the appeals process is not anything at all like an actual lawsuit. There’s no independent third party, like a judge, weighing the evidence yet.

Both of my appeals of LFG’s egregious decision (the first one I made on my own, and now this one with my attorney) are appeals to the company itself. It’s nothing more than me saying, “Hey, you guys are wrong. Here’s why. Change your mind or be sued.”

LFG’s employees use language to try and make us all think the appeals process is about reviewing facts and making the right call. They’re spraying Febreeze on a pile of bullshit, guys. Being disabled as defined by your policy isn’t enough to win a disability appeal. You also have to convince them it’ll cost them more in the long run not to pay you.

I knew this in my gut from the day LFG cancelled on me, but I was so blinded by rage in the early stages that it was hard for me to wrap my brain around it. With a little more mental clarity, I see the appeals process for what it really is. Me saying, “Hey, bitches. Look at all this stuff I’ll be taking to the judge when it’s time to sue. Sure will cost a lot of money for you to prepare your defense and then lose anyway.”

Knowing Lincoln Financial will be holding my money hostage for at least another three months, seems like a good time to plug my serial memoir, Who You Gonna Believe.

Oh, SNAP! Signing up for Food Assistance Benefits

Oh, SNAP! Signing up for Food Assistance Benefits

I applied for SNAP food assistance benefits this week. For those of you who don’t know the joys of being disabled and impoverished just on their own, let me tell you how thrilled I am to have had the opportunity to jump through these hoops while working my way up to the second-worst migraine I’ve ever had in my entire life the past ten days.

Actually, let’s skip the part about my migraine. Unless you have them, you won’t understand, and I’ll give myself another trying to explain it.

In order to qualify for nutritional assistance benefits, you have to verify that you have no money. (Which seems weird, doesn’t it? Prove a negative! Demonstrate you’re begging for food assistance because you need to eat and NOT because you enjoy defrauding government agencies! Peasant!)

Oh! I should clarify, the individuals working at the Illinois Department of Human Services who helped me this week. They were lovely people, working to make sure humans get things they need to live. (Well, except for the security guard, but I think every government facility needs an antagonist, don’t you?) The people who treat you like trash are typically “pro-lifers”, libertarians, friends, and family.

Anyway, our case involved submitting 24 pages of supporting documents in addition to the benefit application itself. There were four ways I could submit those documents according to the letter: drop them off at the IDHS office, fax them, mail them, or upload them to the case management thing-a-ma-jig.

Uploading them seemed like the best option, except it wasn’t actually possible. So then I was like, “Well, I’ve got one stamp left.” But have you ever tried to tri-fold 24 pieces of printer paper and stuff them in a business reply envelope? Then I figured, “Well, I don’t have a landline, but I could do one of those free fax services online. But turns out it costs money to send faxes exceeding three pages with those things.

“Dan! You’re taking me to IDHS today!” He was gearing up for a trip to the pharmacy. “Don’t leave without me!”

Can I just say that parking at IDHS in Champaign County is absurdly inadequate? Even with my accessible parking placard, there wasn’t anywhere to put the car. “Can I drop you off?” Dan hesitated. You could tell he didn’t really like the idea.

“Yeah, do it,” I said. “I’m not coming back here later.” I didn’t bring my mobility aid because in that particular building it’s easier to grab Dan’s arm. But without Dan’s arm? We were taking a bit of a risk.

I didn’t fall though, I just felt like I was going to fall for a solid 15 minutes. (You can’t just leave sensitive documents in a box somewhere, you have to stand in line and physically hand them to the guy sitting behind the Plexiglas.)

Anyway, here’s hoping we get approved soon. Dan and I can really eat well on this SNAP stuff. If it’s anything like 2017’s season of medical bankruptcy, we could get $15* a month. TO SPLIT BETWEEN TWO PEOPLE.

It’s a really good thing Dan and I have this social safety net here, since I didn’t bother to buy a long-term disability insurance policy in case something like a brain tumor ever happened to me one day

…oh, wait!

*Don’t buy toilet paper with SNAP benefits. I’ve never seen it happen, but legend has it conservatives and libertarians will sacrifice a kitten if you try.

On Being Disabled

On Being Disabled

This list on being disabled was originally published on my Facebook page, but I don’t Facebook anymore and I wanted to preserve and update it.

Inspired by the disability community on Twitter who have compiled similar threads, I wanted something to point to the next time someone says to me “you could work if you wanted to” or “you’re asking for special treatment.”

Okay then. Here we go.

Being disabled is being forced to perform your disability for doubters and then immediately being accused of acting. Abled logic can be summarized as: I can fake being disabled, therefore your disability doesn’t exist.

Being disabled is rationing your asks for help, because you’re scared people will get tired of you and abandon you completely. (Because they have, and they do.)

Being disabled is being charged a surplus (sometimes called a disability tax) on the things you need to survive, by people who don’t need the extra money, and then being accused of being a taker.

Being disabled is being called dramatic when you lash out at people who are doing things that will kill you.

Being disabled is being called rude because talking about your disability makes abled people feel uncomfortable.

Being disabled is being shamed for collecting benefits on an insurance policy you paid for, then having those benefits taken from you, then listening to someone bitch about their car insurance rates going up “just because they made a claim.”

Being disabled is having an insurance company tell you the date you became disabled was the day your doctor diagnosed you, even though you couldn’t get a doctor to listen for more than two years.

Being disabled is hearing, “you just want to be disabled” so ableds can pretend it can’t happen to them.

Being disabled is being called a complainer for mentioning you need accommodations then being asked why you never said anything when you can’t participate.

Being disabled is telling abled people what it’s like to be disabled and then being labeled an attention-seeker.

Being disabled is telling other people they’re harming you, and instead of stopping and apologizing, they come at you with a defensive attack.

Being disabled is operating on a battery that only charges to 30% and then being told that because you emptied your own dishwasher last week you could do dishes at Ponderosa 40 hours a week.

Being disabled is smiling at abled people who say they know what it’s like to not sleep for weeks because sometimes they drink coffee before bed and getting up for work the next day is just the worst.

Being disabled is researching and diagnosing yourself because your care team can’t or won’t and then being scoffed at by a nurse practitioner for using big, fancy words like “seronegative.”

Being disabled is having abled people say these problems are not systemic—that you’ve just encountered a couple of bad doctors or you’re a difficult patient—because they’ve never had a similar experience. Ableds won’t admit it’s because they rarely see a doctor.

Being disabled is saying these things over and over every day and then watching it all unfold again, just like before, day after day after day after day.

Being disabled is understanding completely that you don’t know what it’s like to be somebody else while somebody else pretends they know what it’s *actually* like to be you.

Being disabled is being told how lucky you are to have the ADA now and then being told it’s on you to file a lawsuit to enforce it.

Being disabled is being stuck inside or outside a hospital bathroom labeled “accessible” because the door is too heavy to push.

Being disabled is being bombarded with inspiration porn about how some disabled people have done extraordinary things most abled people can’t do and then being expected to do something similarly monumental or else be ashamed of yourself. (But it’s OK if an abled person claims a mental health day because she wants to go shopping. She can’t be expected to perform all the time.)

Being disabled is contributing to the social safety net for decades, being paid less than a dude who didn’t work as hard as you, having a smaller 401(k) and savings account as a result, receiving less in disability benefits based on past earnings, and then being called lazy by a Young Republican whose parents are currently buying his C-average college education.

Being disabled is taking the time to compile a list like this knowing that the people who need to be educated won’t actually read it.

Falling Out of Chairs is My New Superpower

Falling Out of Chairs is My New Superpower

The plan is to start editing the memoir today, but I hurt myself cleaning my office on Saturday, so we’ll see how much I get done. Let me tell you about my injuries. It should be entertaining. But first, a little backstory.

I’m not a neat freak. I like organization and I have my pet issues, but if I’m the only one to do the work of cleaning and organizing a room? Things can go long periods without being tidied up or sorted. The one exception is my work space. If I’m going to use my office and desk, they absolutely cannot be cluttered. Seeing that sort of mess (or just knowing it exists, if I’m honest) powers down my left parietal lobe.

Fun Fact: Back in the days when I could work 9 to 5, I would usually stop what I was doing every day at 4:55 to clean and organize my desk for the following morning. Because chaos on my desk always translated to chaos in my mind.

Well, as you may know, I spent a large part of January fighting bronchitis. During that time the office wasn’t just neglected, it became the de facto foster home for any object displaced by Christmas decorations or otherwise existing without spatial designation. That meant if I wanted to start using my office for writing and editing again (and I did) I would have to clean first.

Things were going okay until it was time to vacuum tumbleweeds of pet hair and traces of cat litter. I became fatigued (as I am wont to do) and decided that it would be easier to sit in my office chair and scoot around while I vacuumed Cat Box Corner . I’ve done this many, many times before.

Thing is, this time I leaned a little too far forward in the chair. As my weight shifted to the front of the chair, I pushed it out from under me sending it across the room behind me. I screamed, dropped the vacuum hose, and lay supine while the Shark blew hot, dusty exhaust in my face.

Yes, that’s right. I fell out of a chair. Vacuuming.

There were three cracks on the hardwood. My tailbone, my elbow, and the back of my head. No serious damage, nothing broken. Just a couple of bruises and one of those nausea headaches brought on by a minor concussion and head-to-toe muscle tightness. All exacerbated by the fact that my brain tumor already tells my nerves to record a response of PAIN to any and all stimuli.

Good times.

Anyway, I still hurt more than usual, but I’m excited to get back to work on my untitled memoir. (I actually had a working title for it, and then found out — after Google searching potential domains — that that title was already taken, and so now I’m back to untitled again.)

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