The Next Step in the MS Process, and Thoughts on Poetry Costs and Middle-Aged Poets

The Next Step in the MS Process

For those of you following my health journey, I thought I’d give an update. I met with a third neurologist this week and found that he was both “intrigued and concerned” by my case and was very knowledgeable about what was going on with me. The bad news was the brain damage from the new lesions was more extensive than I originally thought – and the doctor pointed out areas of damage versus areas of inflammation. The vertigo and nausea I have been experiencing, he thought, were definitely caused by a large dark lesion in the center of my brain stem. I have about sixteen lesions, clustered in a certain way that seems consistent with MS. The lesions were large and described as “angry.” One of the funnier things he said was ‘With this amount of brain damage, I’d expect your symptoms to be much worse.” So he was pleased with the progress I’d made since August, even though my walking still includes a lot of stumbling and shaking. He also showed me the pictures of a “typical MS” brain compared to my own – and they were almost identical. He thought the only testing needed was a few more blood tests and another MRI to get the MS treatment go ahead from the insurance – and I now have the official diagnosis of “CNS Demyelinating Disease” on my charts. Virginia Mason is also known to have some of the best vestibular physical therapy in town, even though this neurologist said the treatment is more successful with people whose lesions are outside the brain stem, not in the center of it, he was willing to write me a prescription to see if it helps. I was pleased with both the fact that he had researched my case and the specifics of my other conditions and seemed interested in talking to my other doctors, because that will be important when we start talking possible MS treatment options. We’re set to talk again before Thanksgiving.

And, my first official post as an MS-blogger is up at HealthCentral! On helping you understand your new MS diagnosis and the books I liked: https://www.healthcentral.com/article/books-for-ms-newly-diagnosed

Here are a few pics if you’re interested in what the Northwest looks like in fall. Pretty leaves – then – suprise – snow!

The other ideas that have been occupying my mind has been two discussions about poetry on Facebook.

Disappearing Midlife Poets

One was about midlife and mid-career poets being overlook and ignored. I wrote a little bit about this a few years ago, using Ellen Bass as a test case for this phenomenon in women (though the discussion on Facebook was started by a male poet, an old blogger friend who also happens to be a pretty good critic.) Here’s a link to the essay on The Rumpus in case you are interested:
http://therumpus.net/2016/01/the-amazing-disappearing-woman-writer-on-ellen-bass-and-how-to-avoid-a-disappearing-act/

There was some discussion about the sheer number of books being published, and the public’s obsession with the young and the new, the first book, and the scarcity of attention paid to poetry overall. As a poet with five books now, it does seem like it is hard to get attention when you’re not sparkly and new and sending around your first book. Especially if you don’t have a large press or amount of publicity behind your book. So it’s a question of why do you publish in the first place, and if you are comfortable with being read by a small number of people, and how hard you want to work to be heard in the crowded market.

How Much Should You Spend on Fees While Trying to Get Your Poetry Book Published?

The other conversation, which seems somehow related, was by a younger poet who was wondering if she was spending too much on first book contest fees and reading fees. It’s expensive! So it’s a good question. The truth is you can spend $1000 in a year easily if you’re not pretty picky about where you send your book. But the other truth is, you’re poetry is probably only a good fit for about a fourth of those markets. Traditional publishers and experimental publishers won’t like your work easily – and cutting-edge, youth-oriented publishers are looking for something different than Copper Canyon or Graywolf. My advice was to set a budget for yourself for the year, and try to include a mix of fee-based contests or open readings and places that allow you to query or send your manuscript for free, which will help your poetry dollar go farther. Also, be sure to do some research – like, at least looking at a book from the library from the presses you’re sending to. That will help ensure you’re sending to places  you at least know you like. Also, send to places that have sent you notes or liked your work or made your MS a finalist in the past. (That’s for poets who’ve been at this for a while.) For the big contests, like Yale Younger or  Walt Whitman, I certainly don’t have any winning tips, but I think you should at least try for them, because who knows? Those are really like the lottery. Also, in the meantime, build up your poetry audience by sending your individual poems out to lit mags and trying out your social media outlets – Twitter, Facebook, Pinterest, etc. It’s never too early to think about how you’re going to help promote your book when it finally does come out.

Halloween Poetry and the End of Fall Sunshine in the Pacific Northwest

Happy Halloween, everyone!

Looking for scary poems? I wanted to post at least a few spooky poems since, after all, I am a speculative poet, sometimes even a horror poet, so, here are three poems from Field Guide to the End of the World.
In honor of the new Blade Runner, here’s “Sentient or Replicant,” and in light of today’s political revelations, here’s “Introduction to Conspiracy Theories,” and one of my favorites from the book, “At the End of Time (Wish You Were Here).” Click on each poem to make it bigger.

And in case you missed it, let me direct your attention to Barrelhouse’s October blog spooky poetry feature. This one has three poems by me, but if you go to the archives on the right of the blog, you can read 30 days of spooky poetry! Thanks to Killian Czuba who curated this month’s work!

The Last Evidence of Sunshine in the Pacific Northwest

These pictures are evidence of the end of the sunshine in the spooky Pacific Northwest. I have scary and sincere pumpkin bogs (yes, those pumpkins are growing out of the bog,) Snoqualmie Falls at flood stage along with the made-famous by Twin Peaks Snoqualmie Lodge (which stands in for Great Northern Lodge), and various pictures of changing leaves and pumpkins. This week the high is supposed to be in the 40s and of course, rain, and the time change will make everything a bit gloomier. Oh well! At least I’ll have these sunshiney pictures!

My Rumpus Review of Beth Ann Fennelly’s Heating & Cooling, the Arrival of the Big Dark, and Poetry Angst

New Rumpus Review of Beth Ann Fennelly’s Heating & Cooling by Me
http://therumpus.net/2017/10/heating-cooling-by-beth-ann-fennelly/First of all, check out my review of Beth Ann Fennelly’s book of micro-memoirs, Heating & Cooling, up on The Rumpus. And here is a picture of my lovely kitten Sylvia posing with the book! Beth Ann Fennelly has been a favorite poet of mine for a long time – I taught her books when I taught – and I very much looked forward to seeing what she was doing in her new book!

Poetry Angst

I have been hearing a lot of Poetry Angst on the social medias these last weeks. People who can’t write poems anymore, who don’t want to send out their work as it seems under-rewarding, who are just tired, who published a book of poetry and found the experience disheartening. I was thinking of when I started a poetry blog back in in the early 2000s, you would hear from lots of different poets from lots of stages in their careers about their poetry anxieties regularly, but things like Twitter (too short) and Facebook (encourages people to post only the happy stuff) have decreased the amount we writers hear from each other about the struggles we might have. I realized yesterday as I made a mental list that a lot – a LOT – of my old poetry blogging buddies have dropped out of the poetry game altogether – they’re writing in other genres, or they’re working too hard/had kids/other things that just got in the way. Or poetry just didn’t reward them as much as other genres (see above, Beth Ann Fennelly’s book of micro-memoir essays – which is probably having an easier time selling than a book of poetry would.)  It’s too bad, because a lot of the poets who aren’t publishing or writing much poetry were really good writers who I admired as people and as poets. And I love reading good poetry.

It made me think about quitting poetry, especially with the MS stuff going on. I mean, no one is holding us hostage and forcing us to write poems. No one would probably even notice if I stopped writing new poems or sending out work for, say, a year, to literary magazines – and no one would cry if I never published another book of poetry. I definitely do not not make enough money from poetry to make it a huge priority. These are just facts. With my new neurological problems, of course I’ve been thinking harder about exactly what I put my energy into, now that showering is a major feat and energy is not renewable, so to speak – if I do a lot one day, I’ve got to rest the next. How can I decide if poetry is still worth doing, especially now that so many of my friends have fallen by the wayside? I am still writing pretty regularly – and when I write, it’s usually poems – so the urge to write has not disappeared. Maybe the urgency to publish has waned a bit? I really appreciate the folks who write to say they liked a certain poem and I’m certainly appreciative of those who buy one of my five books – but who would really complain if I just…didn’t publish any more? Yes, every writer, not just poets, has doubts and concerns, times when trying to do stuff seems tougher and less rewarding. If you feel like this, you are not alone.  Days grow gloomier at the end of the year, and boy, this has been one challenging year – not just for me, but for a lot of us. Don’t beat yourself up if you need some downtime.

The Big Dark Arrives, and Some Pictures of the Last Sunshine

Yes, October 15 arrived along with its usual companion, what we in the Northwest call “The Big Dark.” It starts getting dark much earlier, and each day is punctuated not by the arrival of rain or not, but by how much rain. It’s a gloomy time, which is why we Northwesterners like to run around like maniacs and take pictures in the few days of sunshine fall affords us. You can’t see it here in the pictures, but these are taken since I transitioned from a wheelchair to a cane, which affords me a lot more independence and cheers me up. Every little bit helps! Here are a few of Glenn and I enjoying our last remnants of sunshine:

Three New Spooky Poems at Barrelhouse, the New Poet’s Market 2018, and more Halloween-y madness

Hey guys! Are you in the mood for some scary, spooky poems? Barrelhouse is hosting them all month and today three of mine are up: “Cancer Scare,” “Self-Portrait as Film Noir Villainess,” and “Lessons Learned From Final Girls.”

Yesterday the new Poet’s Market 2018 came in the mail, which contains 4 articles by me on things like starting a poetry group, promoting your new book, and strange places for poetry readings, and an exclusive webinar – that’s right, webinar, my first! So be sure to go get your own copy. Here’s Sylvia modelling the book! I also picked up my friend Juliana Gray’s new book appropriate for Halloween, Honeymoon Palsy – check out that cover! Sylvia’s modelling that book too.

I’ve been making some headway with my physical and occupational therapy and have more neurologist tests and appointments scheduled in November. In the meantime, I’ve been trying to get out and enjoy some fall activities before the rain permanently descends on us – pumpkin patches, the zoo to see the new snow leopard cub and new giraffe baby, and the last roses of the season. I’m making the transition now to being able to move around the house with a cane, which increases my feelings of independence quite a bit. I’m still having some frustrating neurological symptoms (my legs and hands give out when I’m tired, and I’m sometimes having trouble swallowing) but hoping to be back to a lot of my normal activities soon. These little outings have been positive experiments in getting back to doing fun things instead of just medical things. I also watched “It’s the Great Pumpkin, Charlie Brown” to get myself in the mood for the increasingly dark and gloomy October weather that’s coming, and we’ve started baking in advance. I’m looking out at the last sunshine we’re supposed to have for a while…I better try to get out and enjoy it today!

Verse Daily Web Feature and a New Poem up at Red Paint Hill

Good News in the Midst of Bad News

So, in the middle of doctor appointments and physical therapy, the onslaught of news both terrifying and dismaying, I’ve had some good poetry news. It feels weird to share good news in the middle of bad world events, even in the middle of my own health struggles, but it seems that 2017 is the year that keeps on giving that way. Today I was discharged from home occupational therapy, a sign that I’d made some serious progress since my hospitalization, and to celebrate, Glenn and I drove out to a local pumpkin and sunflower patch. It was perfect weather, despite the news of shootings and deaths. It seems that the weather at least is trying to be kind to us, after a dismal summer of smoke and heat.

Verse Daily Web Feature

So, my poem “April in Middle Age” from Contrary Magazine is this week’s Verse Daily Web Feature. Thanks to the folks at Verse Daily and at Contrary Magazine for publishing the poem in the first place.

Red Paint Hill’s new issue and my poem “The Myth”

And a new poem, “The Myth,” is up at the new issue of Red Paint Hill.

Kelly Davio’s It’s Just Nerves

Also, my friend Kelly Davio released her book of essays today – help her celebrate!

 

Happy October! Check out this Transatlantic reading and interview video podcast with me and Neil Aitken

Happy October Everyone!

As you can see, what with the sunflowers and pumpkins, I am celebrating the return on fall, enjoying the return of rain and sixty degree weather and book-reading-season.

Speaking of books, reading, and other fall fun…

I had such a good time yesterday with Robert Peake and Neil Aitken at the Transatlantic Poetry series – if you want to see the video on YouTube, here it is!  It’s Neil and I reading from our latest books and then an interview where we talk about the relationships between poetry and code, why we write persona poetry, how to write poetry through dark times, and more. I’ve also embedded the video below.

New Rumpus Review of Field Guide and an International Podcast Tomorrow

Thank you to The Rumpus and to Julie Marie Wade who wrote both a thoughtful and highly entertaining new review of Field Guide to the End of the World. It was a great review to wake up to, both content and style-wise!

Tomorrow at noon Pacific time I’ll be chatting all-Millennial-style in an International Google Hangout podcast with host Robert Peake all the way from England along with fellow guest, my poet friend (and fellow Elgin Award winner) Neil Aitken here! http://www.transatlanticpoetry.com/readings/48-neil-aitken-and-jeannine-hall-gailey/
Come check it out! We’ll talk speculative poetry and all sorts of internationally-appropriate subjects!

And, another shot of orange sunflowers (with Mt Rainier faintly in the background) for good measure, just to up the “fall” quotient of this post!

Today I am dragging out my sweaters and boots, and trying not to think at all about my new MS diagnosis, all the upcoming anxiety-provoking tests. I’m not doing any research today on what therapies work best, or think about all my weird stuff, besides doing my required hour of physical therapy. I have to work to not let my whole life get taken over by this stuff. Today I will read fun books, think about myself as a writer, bring home some sunflowers for the house to celebrate this beautiful review, and get ready to chat poetry tomorrow! I am ready to create some happy space in my life,  to open up that tight feeling I’ve had in my chest since my hospitalization, like the hot air balloons that have been rising up in the evening around my house.

 

Fall! Pumpkins! And finally celebrating some good news…

So, I couldn’t really celebrate or enjoy the good news earlier this week (Field Guide to the End of the World won the Elgin Award for full-length poetry books, and Neil Aitken won for chapbooks!) because I was so distracted and miserable with the effects of the steroids. So note to self – steroids have some serious downsides that just left me so sick feeling, sleepless, and yes, that ‘feeling of impending doom’ is a real thing – that I’m just now finally processing the good news today as I’m finally feeling like my body is not one big terrible pain. So, hooray, finally!

Also, Robert Peake will be hosting Neil and I on an International Podcast called Transatlantic Poetry in a week on September 30 where we’ll be talking speculative poetry and more – check it out here: http://www.transatlanticpoetry.com/readings/48-neil-aitken-and-jeannine-hall-gailey/

It helped that the neurologist lowered the dose of the steroids, and I also did some socializing – my old college roommate came over for a visit today, and I’ve had some good phone chats over the last few days catching up that made me feel more in touch with my real self, not just my “sick self.” I’m so sick and self-conscious when I’m not feeling good it’s really hard to schedule visits, but really worth it.

I can’t say the perfect 65-degree-sunny fall weather lately hurt my mood, either. I started hurtling my body outside, after months of being stuck in bed inside, even when I was too sick to leave the house for long and my legs were not willing to stay upright much – I still stumble regularly and mostly have to be in a wheelchair – but I’ve been photographing with a full heart. Here are some of the results. A lot of pumpkins! And sunflowers. Almost all these pictures were taken less than ten minutes from my house. And I even have pictures of a real pumpkin patch versus an artists’ glass pumpkin patch at our local gardening store Molbak’s. When was the last time I was well enough to stop by a farmer’s market, much less eat anything from a farmer’s market? Too long! Today I brought home pears and apples and squash and am so excited about fall produce – that’s got to a be a sign of returning health, after about three months of constant nausea and nausea meds. I think that though the steroids made me miserable, maybe they did help me push through the worst part of the flare – I just wish they’d put me on them earlier so I could have started getting better earlier? Oh well. My thought processes feel a little clearer, too. I’m hopeful this is an upswing that lasts, not just the temporary effects of the steroids and the beautiful weather. Even if it is, I’m hopeful that finally getting some post-steroid sleep and doing things that lift my spirits has a good effect on my immune system. MS is a mysterious illness, I’m finding, difficult and confusing to manage – I’ve got to figure out some coping mechanisms. I think part of it will be enjoying the things you can while you can. Sunflowers and pumpkins seem like positive symbols – maybe a bit fleeting in their beauty, worth noting nonetheless.

Elgin Award for Field Guide! Good News and Perspectives from the Wheelchair

Elgin Award for Field Guide to the End of the World!

First of all, some good news to announce, finally! Field Guide to the End of the World has won the SFPA’s Elgin Award for speculative poetry. I was so honored to be nominated (amid a lot of friends with good books and chapbooks, this year, so check out the nominees – all the book noms are great and I voted for both chapbook winners Neil and Margaret whose chapbooks are totally worth getting) and extra honored to win, especially in a year that let’s say, in an understatement, has been challenging. Here’s the official announcement on Facebook (will update when they get their web site updated!) This is a great time to order a signed copy from me or order from Moon City Press or from Amazon and finally get the copy of apocalypse poetry you’ve been really needing!

Perspectives from the Wheelchair:

It’s been a little over a week since my new neurologist started me on steroids, what with all the fun and complications of that. More energy – yes! But also, terrible insomnia? Stomach troubles? Other indignities? Well, it was nice to get my speech problems to resolve and a little cognitive boost, but not sure it was worth all the downside? (Let’s not even talk about my research into MS meds – 14 approved from RRMS but none of them look even remotely attractive in terms of problems, side-effects, complications – especially with me, the person who gets allergic..to b12 shots and OTC children’s meds. It reminds me of researching chemo drugs last year for carcinoid – it wasn’t that they were bad, it’s that they didn’t seem to have terribly encouraging results, beyond helping symptoms.

I am not back on my feet yet (still deemed a fall risk as my left leg doesn’t seem to cooperate and my vertigo is still there) and I’ve got  a couple of months (!!) still of testing remaining – EMG tests, autonomic nervous system, stomach and eye tests, all in the coming months to help determine what exactly is going on, what processes and treatments might be most likely. I am still doing therapies – card matching games, writing with my hands, typing is still not great (so many more typos!) and trying not to let my stomach.dizziness.houseboundedness stuff get too depressing or overwhelming. My insurance – for which I am very grateful – has sent a non-ending troupe of therapists to my home to try to get me back to some semblance of normal – occupation therapists who help me figure out how to do simple things, physical therapists, speech and swallowing therapists (didn’t even know that was a thing, but yes) – and others, too, if I want or need them. I’m still not getting out of the house much as getting dizzy results from things like swinging my head around too fast, I’m still in a wheelchair, it takes a LOT of my daily energy to shower and look like a regular human still. But I want to get there. And the docs think the steroids should help me get on the recovery path a touch faster, so perhaps worth the pain-in-the-ass level? (Those of you with autoimmune problems who have to be on these things all the time, my sympathies – and also any coping mechanism tips appreciated in the comments? )

So as a writer, I’ve been struggling to write a few poems – and when I tried to send things out, I’ve been botching things – editor’s names, guidelines get mixed up, so I’m clearly not at full-blown writer’s mode yet. In the next month or so, I’m going to try to do a radio/podcast thing and a Skype class visit – I’m hoping the steroids will help both the cognitive and speech stuff enough to make me seem at least sort of “normal.”

After facing the challenges last year of researching and testing for rare kinds of cancer (which, by the way, the best they can still say is that “you probably don’t have it but we have to keep watching the liver tumors”) it seems like MS shouldn’t be worse, or even as bad – but it’s weird because the endpoints of the diseases are different, and some of the research on MS – now I’ve read about fifteen books on the subject – are incredibly depressing accounts of the progression and the disabilities and the ultimate failures of a lot of treatments. I’m mostly trying to focus on the positive things I can do to make things better – Vitamin D, physical therapy – and maybe trying to get out of the house a little and do some things that make me feel happy (which wards off the crazies and anxieties I think.) I have a big goal while on the steroids of trying to make it to the zoo – after trying shorter hops to the local bookstore. I’d like to do something to celebrate the Elgin Win too!

 

A new review of Field Guide, Another Step on the MS Journey, and Fall Approaching with Poetry Discouragement

New Review of Field Guide to the End of the World

Thank to to Poets and Artists and Rita Maria Martinez for this new review of Field Guide to the End of the World. It cheered me up during a tough week.

Another Step on the MS Journey

I saw a much better doctor at the Evergreen MS Center yesterday who did a longer exam and answered many of my questions. She explained why my case was probably too complicated for her, boo, because I liked her, so she’s sending me along to the larger UW MS center’s director and maybe they will send me along to a bigger research center after that. She wants a larger research umbrella for me, she said. She thinks I may have MS plus something else causing some of the symptoms. We’ll get another step closer to a firm diagnosis after doing an evoked potentials test, which will be my next step along with an eye exam and meeting with a new gastroenterologist. She said that was probably the last step before an official MS diagnosis – no spinal tap, yay. She was very empathetic and asked lots of questions, explaining things along the way. (Like, my midsection has gone numb along with having the stomach trouble – which could indicate spinal issues even though I don’t have visible spinal lesions yet.) She also thinks my b12 problems – besides kind of masking the bigger issues for years – might be a symptom of another autoimmune issue that’s using up the b12 stores. Interesting! I keep reading books on this stuff but MS is complicated. She is putting me on steroids (hello, hunger, energy and insomnia) for a short term to see if they help. She’s worried that the 14 approved MS treatments are all going to be problematic for someone with liver tumors, a bleeding disorder and a primary immune deficiency, so a little worry about that, though I guess we’ll cross that bridge with the next set of doctors. She said that MS will eventually be one of my diagnoses, and she was sorry because it would be expensive to get long-term care. I laughed and that, and told her last year I’d been diagnosed with terminal cancer, and I thought that was probably much worse for getting long-term care insurance!

Fall Approaching, and Poetry Anxiety

Last night I had an anxiety dream about Trump taking away my health care – literally coming up to me in person and taking away my prescriptions – and another dream in which I was told I’d never be a famous poet like “blank.” (A specific poet I admire.) I know it was just anxiety dreams, but sometimes I do worry that I’ll never really achieve anything in the poetry world and that my kind of poetry will never get me fellowships, recognition, awards – the stuff that’s not supposed to matter, but still sort of does. And especially if I can’t travel or have to take time off for health stuff periodically, or I can’t make it to every AWP – it just feels tough. For a while this last couple of months I couldn’t write – which was really depressing – or even read. And I realize you can’t really take those things for granted, not with MS, or maybe anyone, ever. You feel like you have all the time in the world, and then you’re like…well, maybe it’s limited. Maybe my time to do the things I want is limited. I can see my life getting smaller – being in a wheelchair for the past two months again has reminded me how NOT handicapped friendly most of the world is. Even in liberal and wealthy Seattle, it’s like half the city hadn’t been built with ADA specifications in mind – and I have a six-foot-two 250 pound man to help me when I get stuck with my walker or wheelchair by a curb or stairs or a non-automatic door, most people don’t.

 

The weather has gotten mercifully cooler, and the air cleaner, finally devoid of smoke, and the weather report is calling for rain and highs in the sixties. I can feel my body sighing with relief. I managed to get out of the house today and for the first time in two months (!!) get my darn hair cut – it’s still hard for me not to get really dizzy and nauseous when I’m out, but it was worth it to feel like I was doing something normal and human again. I took some pictures of pink roses still in bloom late and these pirate-type boats at Carillon Point while I was out. And I start medication tomorrow that will hopefully help with the dizziness, numbness, stomach problems, and leg weakness – maybe even the minor motor skills that I really want to get back (hello, handwriting and eyeliner possibility!) I know the fall usually makes me feel more hopeful about writing – all the journals and publishers opening back up, all the readings and book launches. I’ve just really been struggling with doubt about my poetry path as well as this diagnosis, which is definitely a challenge even compared to all the other weird diagnoses I’ve had in my 44 years. I’m feeling a little down on my luck, a little discouraged not only with my body’s multiplying problems but my writing path. I am hoping things get a little easier – rewards, even small ones, might manifest, that my body responds well to treatment and lets me start doing “normal” things again – at least a little socializing. This is really the third month of enforced alone-time and rest, and I’ll admit to growing restless in my confinement. I hope soon I’ll have better news to report. Good luck to all of you in September!

Jeannine Hall Gailey

Jeannine Hall GaileyJeannine Hall Gailey served as the second Poet Laureate of Redmond, Washington and the author of Becoming the Villainess, She Returns to the Floating World, Unexplained Fevers, The Robot Scientist’s Daughter, and winner of the Moon City Press Book Prize and SFPA’s Elgin Award, Field Guide to the End of the World.  Her latest, Flare, Corona from BOA Editions, was a finalist for the Washington State Book Award. She’s also the author of PR for Poets, a Guidebook to Publicity and Marketing. Her work has been featured on NPR’s The Writer’s Almanac, Verse Daily and The Year’s Best Fantasy and Horror. Her poems have appeared in The American Poetry Review, Poetry, and JAMA.

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