So, like a lunatic, I have been working, or, more like, trying to work, through my cancer treatment. Which basically means that when I am not at a doctor’s office or recovering from chemo, I go to my office and do what I call The Hug’N’Chat. The Hug’N’Chat means that lots of my coworkers come by and hug me and ask how I’m doing and want to know how treatment is going. Then they chat about work or their kids or whatever, and then they leave and the next Hug’N’Chatter comes in. I’ve been given a lot less work to do because, (a) I am so rarely at the office, and (b) when I am there, I don’t get that much done because I am so busy doing the Hug’N’Chat. I am handling a little work, but it’s fair to say I am not pulling my weight at the office these days.
At first, I thought this was going to be temporary–I’d have my chemo, they’d put me on hormone therapy, and I’d hopefully live a while longer, but there wasn’t much to do in the way of treatment because I was Stage IV, so I’d likely be back at work a lot more. But now that the docs are throwing around words like “cure” and “aggressive treatment” and “off the reservation,” it’s become clear that I don’t have time to go to work. Juggling 3 jobs–attorney, parent, and cancer patient–is just not feasible in the long term, no matter how kind and sympathetic my office has been. (And boy howdy have they been sympathetic! Honestly, people’s kindness floors me, again and again.)
So, luckily for me, I am eligible for disability retirement from my job, and for SocIal Security Disability Insurance. Most employers these days don’t offer disability retirement–I happen to work someplace that has a pension, and disability retirement is part of that. SSDI is something everyone who pays into Social Security is eligible for. Now, I am lucky–I have a spouse with a good job, and my disability retirement will make this whole thing not so painful of a transition. I get to keep my health and life insurance, too. But if i didn’t…
Let me paint a picture for you. You’re a single mom of two kids, ages 8 and 4. One day, you have a stroke. You’re gonna live, but work is not going to be part of your future anymore. So, you apply for SSDI. Somehow you navigate the online system, or maybe a friend helps wheel you down to the Social Security office in your neighborhood, and you fill out the paperwork. 5 MONTHS LATER, you finally become eligible for benefits. That’s not because of a backlog, folks, that’s written INTO THE LAW. You literally do not become eligible for benefits until you have been disabled for 5 months. So, how are you and your kids supposed to eat in the meantime? How are you supposed to pay your rent or your mortgage? What in the actual fuck?
Better still, now that you can’t work, you’re going to have to kiss your health insurance goodbye, huh? And guess what? You can qualify for Medicare once you qualify for SSDI…but only after two years. TWO YEARS ARE YOU FUCKING KIDDING ME?!?! So right when you are disabled the most, in need of the most medical care, you lose access to a system to pay for it? WHAT IN THE ACTUAL FUCK?!?!
Folks, these are stupid rules. And like all rules, they were made up by people and they can be un-made-up by people. All it takes is someone to care enough to write a letter to their member of Congress. Every day. For the next 3 years. Until it changes. Who’s with me?
It is insane. Also hidden into the system if you are lucky to find it are nonprofit organizations that can help you navigate the system.
Every once in a while, I get middle class white woman remorse for demanding benefits for my child. After all, if we didn’t get them, we’d just get them another way and pay for them. But then I realized, the more I demand the benefits, the less likely they are to be able to deny them to others.
Medicaid expansion is about to become a big mess in Virginia. So I’m in for the fight.