A Good Day Followed by a Terrible Week, MS Awareness and Women’s Awareness Month, and Writers, Disability, and Money: Some Thoughts

Me, on a good day in Kirkland

A Good Day (Followed by a Terrible Week)

This is a picture of me on Tuesday of this last week. So happy to be out in the sunshine (despite the 45°F temperature) enjoying the early flowers, some deer crossing in front of her on her street, walking along Lake Washington. So terribly unaware of the how the rest of the week would go. The bobcat, the predator, appeared last week. This week, the prey, the deer, appear on my street. So which am I to believe, the predator or the prey?

After this, I had dental work, which was supposed to be a crown and a couple of fillings, but ended up being two crowns and a filling, which cost me a thousand dollars more than expected (surprise!) but also, my husband came back during the work and I was in so much pain and so lucid that he asked for more sedation, which meant it took me two full days to get un-sedated. But my jaw still hurt, one of the crowns was too long (and I was unable to get back in to get it fixed—still!) and basically, it made my MS symptoms flare up and took me out for three days which were going to be very busy with work and taxes. Very fitting for MS Awareness month. Hello, MS! I remember you.

Then, I got an estimate. I had mentioned I was doing a remodel for an ADA bathroom in my house. I told the group at the beginning what the total cost was we could afford. Alas, after we’d sunk $20K into materials, they sent a work estimate that was twice what we could afford. Then I started stressing out about my choice to be a poet which pays no money (see my taxes for proof,) being disabled (which I can’t help) but forces you to do expensive things to a house to be more independent, about trusting the people the way I did to get the project done in the budget we’d agreed on (ha ha, niave woman!) On top of getting the too-expensive and super painful dental work, I was suddenly counting up things I could sell (old jewelry? clothing? books? not enough) and scrambling for any kind of money in the works – from poetry royalties (which publishers can conveniently forget sometimes) to freelance work even knowing I’m already overcommitted for March and April as it is. People with MS have a certain amount of energy, and after that, sadly, we are out and we have to rest and recover. Dental work has always been a major trigger for my MS (in fact, what caused the first flare), so I should have known this week would be tough. Then I cancelled cable services, housekeeping services, sold some clothing, and cancelled some magazine subscriptions. None of this, sadly, makes much of a difference financially. None of this is the end of the world, but it was very stressful. It did make me think about money, being a poet, and being disabled…

AND SO…

Plum blossoms, blue sky

On Writers, Disability, and Money (and Possibly Gender Pay Disparity?)

(Warning: Frank talk about money. If that makes you uncomfortable…flee!)

I started thinking seriously about the writing world and how little it values writers, especially poets. Back when I was healthy and could keep up with the stressful atmosphere, the sex discrimination, and the terrible hours, I was a tech writer, and I was good at it—I got promoted and promoted and ended up with a pretty good job at a pretty good salary. Unfortunately, I had spent all my spoons (see: spoonies) getting there, and almost immediately was hospitalized and almost died from health things that were undiagnosed (who has the time when you’re working 80, 90 hours a week) or neglected (again, when you’re in a time crunch, there goes your self-care). I ended up quitting technical writing and becoming a full-time poet, with some side things like essays, book reviews, and occasional journalistic writing that paid something. That was 23 years ago now. I am now pretty disabled, and all my health stuff is expensive. I just can’t do some of the things, energy wise, I was happy to do when I was younger—like volunteering 20 hours a week at lit mags and creative organizations, for example. I can’t make it to as many readings, or travel for book promotion like I used to. MS—which I probably had for over ten years and have been diagnosed with for seven—has made energy conservation a serious matter. If you do something one day, you have to rest the next. And if you don’t, your body WILL come for you. MS is not unique in this way. CFS, long Covid, lupus, and cancer all affect energy levels AND finances.

So if you’re a writer and you’re disabled, what are your choices? Well, I can tell you from experience, even if you paid into disability for years—and I did—it is very hard to qualify for government disability payback (which is different than disability social security?)—it is just paying you what you paid into the system for this occasion. Plus, they limit you to $1100 a month in pay or they kick you off and you have to reapply. It takes an average of six years—and a lawyer—to get any kind of real disability money, the kind you could sort of live on. So, instead, you choose freelancing, gig work, OnlyFans—whatever you can do to pay the bills. Maybe you have wealthy parents (I don’t) or a wealthy husband (again no)—I do have a husband whose health insurance at a big tech company helps keep me alive, but we pay out of the nose for it. We both have student loan debt. Specialists are expensive. MRIs are expensive. All the meds I’m on—you guessed it—very expensive. (Most MS drugs cost 3-5K a month.)

Writers right now are getting squeezed. Universities are shuttering whole English departments, not just literary magazines which are also falling by the wayside. That means more writers, with less ways to make a living. (Adjunct teaching, by the way—which I did for four years at an MFA program—pays worse than minimum wage and requires a ton of time and energy.) Publishing—which used to a respectable business you could do to earn a living—has been consolidated so much that making a decent wage there is nearly impossible, and certainly not if you’re not in-person working, young, attractive, energetic and in a big city like New York City. I have noticed there are fewer places that pay for book reviews. Many newspapers are folding. My little brother tells me “Print is dead! You’re working with extinct ideas!” That may be. I’m also a little older—wiser, too, maybe but not wise enough to figure out a way to support myself. My brother encourages me to put ads on my web site, but I don’t want to do that. Yet.

Cherry blossoms, blue sky

Anyway, I come upon some hard facts: do I try to get paid for poetry, or do I try to do something else completely? If you are disabled, your choices for work are fewer and farther between. As much as I hustle, my books aren’t selling as well as they used to. (Buy a signed copy of my books from me to support a disabled poet! Or have your library request the e-book or print book of Flare, Corona.)

I am doing tutorials and college visits and virtual readings. Should I be turning down unpaid work at this point (like the con that pays you in free attendance)? Should I only be sending to journals that pay that don’t have submission fees (and how many of them are there?) So many questions. Where should I direct my limited energy in the short—and long—run? Are the rewards worth the effort? I’m questioning a lot of my decisions, and that’s okay. Tax time by itself usually brings up a panic attack about how much I’m NOT making, and this year with the unexpected immediate expense just throws that into greater relief. It’s not any of the things that happened this week individually, but the accumulation of them. I try to look on the bright side of things most of the time. Maybe it’s a sign from the universe that I need to change, but how and what I have no idea. It’s a new moon tonight. I was happy that Miyazaki won an Oscar but sad Lily Gladstone did not. I felt so positive about things last month, that maybe things were moving in a good direction. Maybe I’ve let the dental pain and financial stuff overwhelm me. The time change never helps, either. Anyway, signing off, and hoping for a better week ahead.