When I was growing up, I wished for a twin like my uncle for my aunt— appreciably different yet inconceivable as one without the other.
Then I saw the fairies with kaiju at their beck and call. What magic in their close harmony! To never be alone seemed enthralling until the terror set in.
Now the ideal seems to be simple companionship at a distance easily traversed by an imaginary moth. Just a little one will do, as long as it answers to a song.
Happy birthday, Cool Cousin! I’ve been working on this one off and on for about 18 months, but I threw everything out and started over at 3:45 am this morning and I’m much happier with it now. 🙂 Thanks for a lot of things, but especially for Daikaiju when I needed them most.
Today, I put in the request to IngramSpark to take the print version of To Tune the Beast out of distribution. Here’s a preview of why:
Self-publishing, quite simply, was not made for me, or people like me. I congratulate myself on at least having got the book into print at all, given the technical problems I had to deal with from the start. When Ingram recently offered free revisions, I jumped at the chance, seriously believing it would be simple to make the edits I needed to in the print version. That repeated line on page 197, first and foremost (which doesn’t exist in the e-version, though the e-version has its own errors, I’m sure.) And I could also change the summary on the back cover to something that captured more of what goes on in the book. Almost none of that went according to plan.
First, Adobe ceased to carry my original font, so I had to make do with their substitute, which made deletions possible but not editing text beyond punctuation. Then came the cover.
If this looks scary to you, you should see the original template they give you for the cover! I wouldn’t have figured out what to do with it if not for a helpful author on YouTube who also uses the GIMP for image editing.
Everything seemed to go fine in the photo-editing process. It was only one layer. Then the proof came, showing ridiculous changes in color that weren’t on the PDF I’d uploaded to Ingram. It took three weeks and an escalation to human customer service to discover that I needed to flatten the image first. (Evidently I also had to do that before, but I didn’t remember.) Then I received that Title Processing Error notice about the insufficient bleed on a page I hadn’t even changed in my updated file, the map of Karst. The artist of that map, if she’s reading this, has probably just started swearing and wondering the same thing we both did when I was struggling with the file uploads two years ago. Why does anyone do business with this company?
Maybe it’s easy for some, but I’m struggling enough with merely existing without feeling bad about my ‘deficiencies’ where technology is concerned. This is why I had to retire! So I said “Enough is enough” and made the first move to getting away from IngramSpark. I am keeping the e-book out there, unless Ingram mortally pisses me off. (Here’s the Bookshop.org link, by the way, if you would like a DRM-free copy.) It seems advantageous to my long-term goal of getting the full Coruscar duology published by professionals, since people have written positive reviews and future agents can see them. (Also, if you’ve written one of those reviews, thank you!) But I really hate not being able to accommodate people who don’t read e-books. I myself can’t use e-readers anymore, because of my issues with screens. More than ever, I wish I had that audiobook version for you, but that’s one more thing only a publisher is going to be able to do for me. Probably. I continue to hold out hope that I’ll meet someone with a nice quiet studio and the ability to compress a terabyte of audio files into something downloadable.
So I continue working, and you readers continue waiting. I thank you for your patience.
This marvelously stressful version of Piazzolla’s “3 Minutes with Reality” was the closest way I could think of to show you what it’s like to write a book you love, then decide to publish it yourself and have the misfortune of distributing it through IngramSpark. 🙂
Canada geese (not swans) at Lake Monona; photo by my mom
In Erin Morgenstern’s The Starless Sea, the character Mirabel apologizes for taking Zachary Ezra Rawlins out in winter weather that she describes as “poetry” because it’s harsh as well as beautiful, and it seems to contain metaphors that demand work from you. Today is a poetry day here, the constant snowfall beautiful but with a bite.
I’m glad to be able to shovel it myself now, and not prevail on my family, after my long convalescence from a hysterectomy. Surgical menopause without HRT (we are fixing that now) is a hell I don’t recommend for anyone, especially with MS, but I have definitely not regretted being free of the daily pain and misery of adenomyosis. Fortunately, I just yesterday learned that the worst of the symptoms I have to deal with right now can be eased by acupuncture, and one of those symptoms being the sense that there’s no point to anything, least of all sharing my thoughts in writing, I finally have the ability to put some words down here.
I have some non-metaphorical poetry for you! I wrote it for a friend who’s taken care of me more than anyone else this whole past year. Days before the surgery, when I had to miss going out on a Prohibition Night at my local because I needed to avoid people as well as alcohol, and was not looking forward to being stuck at home for weeks afterwards, she drove all over town looking for Chartreuse so she could bring Prohibition Night to me in the form of her favorite cocktail on the menu, the Last Word. It was like Grace Kelly bringing 21 to James Stewart in Rear Window.
Post-surgery, she made sure I had company and restorative Thai food when I was starting to go stir crazy. That particular night was extra memorable because of a video she sent me after she got home, and which I wish I could post here, murky as it is. We’d been talking about tundra swans, which are only here for a while each winter, and she wasn’t sure they hadn’t gone already from her lake, on the other side of the isthmus from mine. Turns out, they hadn’t. (And if you’ve never experienced their calls personally, here’s a video from Ottawa, where they may be now.) So in addition to spicy noodles, I got a poem. Thanks, Nancy. ♡
Swans, Lake Mendota
You send me a blurred video at night, knowing I see best with my ears, and we’ve just spoken of the mystery you’ve now sent in real time as the purest expression of care I can think of:
a raucous chorus of tundra swans congregating on the lake near your house—chop of open water, of wings, of branches whipping in the December wind.
The suggestion is enough to see them, snowy bodies rising, landing, settling, stretching, wild cries as loud as the heartbeat of the witness standing on the nocturnal shore.
Long may they return, I whisper, and long may you remain, welcomed home on winter nights by an armada of swans.
I always like to close with music, so although this has nothing to do with swans, it is absolute poetry. Julianna Barwick and Mary Lattimore just released their album Tragic Magic (link to Bandcamp) a day or two ago, and ever since the listening party for it this week, it’s been the first thing I want to hear when I wake up. Something about harp and winter; they’re made for each other. And Julianna Barwick’s vocals were certainly made to accompany that instrument. I still can’t believe they covered ‘Rachel’s Song‘ from Vangelis’s Blade Runner soundtrack; it is so good. I almost posted that one here, but ‘The Four Sleeping Princesses’ has more swan+snow energy. Incidentally, the title was inspired by La Musée de la Musique in Paris, whose collection Julianna and Mary were given access to in order to record the album. Mary said that entering the presence of those harps from the 1700 and 1800s felt like encountering fairy tale heroines in slumber. Very much my kind of people, these two. As are you, if you’re still reading.
By the way, I made a slight change to the subtitle of this blog, which you might not have noticed. It used to be ‘A Literary Life with MS’ but I haven’t felt like literature is my driving force for a while now. I write (or try to write) nearly every day, mostly working on book 2 of the Coruscar series, but if I live and breathe anything creative, it’s music. Coruscar being what it is, I’m often writing about music. Otherwise I’d rather be listening to it, or better yet, playing. So I settled on ‘An Imaginative Life with MS’ instead. We’ll just have to see where that leads me.
A piece to celebrate Samhain and Halloween, dedicated to the great esoteric entertainer Jill Tracy, whose albums—including the inspiration for this poem, The Secret Music of Lily Dale—I listen to year-round, but especially in spooky season. 🍂 Her music was what I most wanted to play on the piano, or music like hers, and it’s quite something to be getting closer to that every day.
Clairaudience (for Jill Tracy)
The spirits of the town called to her, that she might speak to them in the oldest of languages.
Dusk after dusk, she let herself in the old auditorium, and sat alone at the time-worn piano, with just enough light to guide her fingers in the dark.
She set up microphones to capture a complex music— improvising with the birds at dusk, with a summer thunderstorm. And the dead of Lily Dale came to leave their mark.
Hearing those recordings— the spirits’ percussion woven, spare but unsubtle, into bird and cricket song, into thunder and rain, into resonant wood and wire, brings so much into focus.
“Music,” she said, “is a ghost” and everyone dear to me, living and dead, relies on it, in one way or another, to survive.
Alas, there’s nothing from that session that I can share here. But she also does “Sonic Séance” performances amid the redwoods at San Francisco’s Botanical Gardens—something I would love to experience in person one day—and they capture her vibe very well.
A bonus: Here’s the whole film of Murnau’s “Nosferatu” with Tracy’s magnificent score, recorded with her longtime collaborators, The Malcontent Orchestra. You can listen to/purchase the soundtrack on Bandcamp as well; it’s marvelous just on its own. I know a new version of this film came out this year, but I haven’t bothered, because, why?
The day begins with wings and claws against my kitchen door, a desperate Robin, trapped in the garage overnight.
Impossible not to tell stories about the lonely hours she spent
as I project my confines on the screen of her mind.
I let her wear herself out until I can open the same door she must have wandered through.
I make a spell of kindly calls:
I’m sorry you had to go through that. I hope you get some rest now and avoid catastrophe for a very long time.
Others have done as much for me.
But I could die here waiting for someone else to show me the way back to the sky.
A year ago today, I started to write in my journal about my mate’s increasingly serious illness, which he did not take seriously at all. Four days later he was taken to the hospital, then transported to a better hospital in a bigger city for nine days of surgeries and tests and more surgeries, only to die of a stroke. I wrote all of this span of time down because I couldn’t cope in any other way but to write, which is how I know day by day what was happening last year at this time. Actually, it’s only the dates that I need help recalling. My memory is hopeless for so many things, but every moment of those nine days, especially my last sight of him, battered and unconscious, still alive but slowly dying, is unshakably vivid. And everything about the end of August and the beginning of September—the chilly mornings and the warm days—all the things I used to think of as Back to School are now Back to the ICU.
The robin incident happened a few weeks ago. Sometimes, to paraphrase a friend of mine, the robin is not just a robin. I can find messages anywhere. The robin, though, was a hapless metaphor that startled the hell out of me as I was sitting down with my first cup of tea, and eventually she became a poem, which I only just finished today, but ultimately she was just a robin who’s probably a lot more cautious now about chasing bugs into peoples’ garages. She still comes back to mind when I feel myself boxed in and thrashing against glass. Sometimes it takes the right person to open the door.
Steve has two surviving friends who’ve kept in touch with me. One of these shows up only when he remembers all his other friends are dead, and he fervently avoids talking about Steve. The other, in contrast, shows up when I don’t even know I’m needing him, and he not only talks immediately about the person we’re both missing, he comes bearing the perfect song for observing the first anniversary of his death, which he plays in the car for me, crying. Gods grant such a man a soft death when his time comes—but let it not be soon.
The song would have also made Steve cry, because it was written and sung by Inara George, whose father, the incomparable Lowell George of Little Feat, died (at the age of 34) when she was just turning five. The song “Release Me” was written to him, but it certainly fits my grief as well. I’d never heard it before, nor did I know about Inara, but my first thought was that her father’s flair for wordplay (“I’m still a survivor / but I’m begging to be lighter” would definitely make him smile) and his uncanny musical phrasing are clearly in her DNA.
And it supplied a word without which I might never have finished a poem about a bird that both is and isn’t just a bird. I wasn’t looking for release before, because I’ve been so focused on how hard it is for me to let go. Somehow, until today, I wasn’t conscious of being caged by grief, possibly because I’m so used to thinking of my body—all my chronic physical burdens—as the only trap I live in. Now that I see its confines, I find that what I’m envisioning as the ideal escape from grieving is not so much a door to let me out as a cat flap, through which I can come and go on my own terms.
The robin would probably not approve of that metaphor, though.
The Baldwin Arcosonic (this one’s from the 1950s) has a lot of sound for a little spinet.
The first week of March, I gave up trying to teach myself to play piano using books. I wasn’t ready to give up on learning, though. Not yet. I started searching for scales on YouTube, thinking if I could just find a decent way to memorize and practice those, I’d have a solid enough foundation to get where I wanted to go musically. Or where MS would allow me to get. I wasn’t quite sure where that was. One of my favorite pianists, Alice Sara Ott, has MS and has talked about how it’s helped her condition remain stable, but she started playing when she was 3. I don’t aspire to her level, or even to that of my character Chalcy Greenglass in To Tune the Beast… Although actually, I do. I would like to be 15-year-old Chalcy, who wanted every chord in the universe at her command, and the freedom to play whatever moved her.
When I found the video “One Scale to Rule Them All!” on Kristina Lee’s YouTube channel, I knew I’d struck gold. Here was a system for any scale I wanted, major and minor, applicable all across the keyboard, using just 5 notes, including the arpeggios that are so critical to being able to improvise, and it came with an excellent handout as well. I would figure everything out from there. Except for one thing. Kristina’s exercises were progressively complicated, moving from parallel to contrary motion. I could do those relatively easily. But I balked when I reached the last exercise, which was playing the same scale with a different rhythm on the left and right hands… I couldn’t do this, and I felt like it was mad to try. That level of coordination, I told myself, demanded something from my brain that MS might have made impossible. Fortunately, I’ve become pretty comfortable with madness, and I require more than a few tilts at the windmill before I declare a thing impossible.
I knew what was necessary was the structure of lessons, and the right teacher. One who shared my tastes, and gave me music I was actually motivated to play. How excellent, then, that Kristina Lee (https://www.livelovepiano.com/) has a whole online course, ‘Simple & Beautiful Piano for Adult Beginners,’ which uses her original compositions in the minimalist/ambient genre. The course was not too expensive, and I had just received a little money from Steve’s Social Security. It already felt like a gift from him. But the moment I started the course, and began checking out some of the books and articles Kristina recommended about the benefits of learning music, I knew this was already more than just a piano course, or even a personal journey. It was an informal neurological experiment.
Kristina has published, with my permission, a little blog post about me, “It’s All Right There”: Learning Piano with Courage and Joy. The title comes from what Steve told me when I first wanted him to teach me to play guitar. I should start on the piano, he said, because a piano is basically a fretboard laid out flat, and you can see every note and chord clearly. “It’s all right there.” Steve has very much been along with me on this experiment, but I’m not going to talk more about that here, since that’s the heart of Kristina’s blog post. Because I try to keep this blog about MS and creativity, I want to focus on the fact that 3 months later, there isn’t a day that goes by without me at the piano, playing something gorgeous, using both hands. Sometimes the inventor of that music is me.
There’s a book I really want to recommend: Every Brain Needs Music: The Neuroscience of Making and Listening to Music by Larry S. Sherman and Dennis Plies. It’s accessible while still having a lot of meaty science, and I was blown away by the chapters on what happens in the brain when playing music–particularly the one in which our friend myelin is discussed. Apparently, young musicians benefit most from the fact that “practice makes myelin” but this doesn’t mean it stops when we get older. “Studies in recent years,” say the authors, “have confirmed that we make new myelin even after our twenties and that learning, such as learning the fine motor skills involved in practicing music, can lead to new myelin formation.” I’m not suggesting that music is going to repair all the damage that’s been done to my brain, but adding more new myelin sounds like a great defense against future progression, doesn’t it?
Steve, who revered Jimi Hendrix, would have loved this illustration
The book in general has explained so much of what I got wrong about my ability to learn music with a degenerative neurological disease. I was making connections between location of lesions and cognitive symptoms that may or may not be true (the jury is still out about the corpus callosum) when, in reality, playing music activates many areas of the brain at once. There are also differences between what sort of musical activity is going on (playing, composing, improvising, or noodling, which I’m happy to report is a legitimate term) and which parts of the brain are being activated or, more interestingly to me, deactivated. In improvisation, the area that cares about the rules is repressed, even if the rules are still being followed on some level.
I have observed this effect directly. I was not able to improvise on the violin, but I am on the piano, and I’m very much aware that this is because I’m letting go of something, in addition to gaining a more intuitive knowledge of the intervals I’m working with in a given key. I fully believe this only worked for me because Kristina made a bold choice in her course: teaching the black keys first. Maybe other adult learners are happy playing songs that all sound like church music, but for me, with my ear trained to jazz and music beyond Europe–especially the pentatonic scales used all over Asia and Africa–I think this was the only way I was ever going to want to play, and explore and improvise, and ultimately, finally get music theory.
I should point out that my online course also came with a hefty bonus, a 77-page Sightreading Jumpstart Kit, which I’m still working through, and which uses all the keys and drills the student in every position in the scale, as well as introducing rhythm practice. There were also a couple sections on recommended music apps at different levels, my favorite so far being Ear Cat (which is Claudio-tolerated, if not heartily approved.) All of this, and the short course Kristina recently produced around a composition she wrote for her beginning-level mother, has put me somewhere very different than I was just three months ago. When Kristina wrote in her post that I was composing, my first instinct was to say No, no, I’m just improvising, or at best noodling, but since I’ve been noodling the same phrases repeatedly, I think she’s technically correct. It still sounds weird and wrong to me, and I wonder how much of that is coming from my depression. I’m not going to say that chronic illness doesn’t win sometimes. I often have days where I can’t feel what my fingers are doing, much less get my hands to play different things at the same time. But there’s always at least one simple piece I can fall back on, and its beauty is a quietly powerful message about how far I’ve come.
It’s okay if I rest there. But I never do for long. When I’m tired, or restless, there’s a pull to play that didn’t exist before. Just the coolness of the sustain pedal under my bare toes is a portal, and as witches say when casting a circle, “I am between the worlds.” I lose track of time, and sometimes when silence brings me back into this reality, I get the uncanny sense that someone has been listening to me, and loves what they hear. Sometimes it’s Steve. More often, it’s my cat.
It never fails to intrigue me when I see Claudio just standing there, quietly looking up at me. He always looks a bit startled, like he’d been somewhere else, too. He’s not a patient beast when he wants a snack or to be let outside. He could jump up next to me on the piano bench and make his demands annoyingly known, if he wants to. But no, he’s quite content to let it continue. Maybe he’s remembering “Papa” playing like this. Or maybe the vibrations do something beneficial for his old bones, like purring is said to do for cats. But I think it’s something more. There are also times when I finish working on some extended piece, and find him asleep on the couch behind me, snoring away. He has multiple beds all over the house, so why does he choose this noisy room, if not because he likes the music? I mean, we already knew he was cool.
I’ll close with Alice Sara Ott again. If you have 18 minutes to listen without interruption to this Tiny Desk Concert of preludes that she played for NPR last year, it’s incredible. (And you can just listen; she has a performance style that even I find distracting.) I said it’s not a goal of mine to reach her level, but I’d love to play even one Chopin nocturne, eventually… The second one in this concert, Op. 28 No. 7, would do.
I was going to write something more creative but I realized a while ago that I never shared the “final” outcome of my SSDI appeal, probably because I knew there was more to come when tax season arrived. Right now, with the state of our government, nothing feels final, or stable, but at least I have one thing I can offer some advice on, particularly if you go through the appeal process and receive your back pay in a lump sum. I was warned that I’d be “taxed twice” on that, and I was. They deduct taxes from the lump sum but you will still owe more. But it wasn’t as bad as I’d feared, and that was because I knew I could not file my taxes on my own.
First of all, my hearing was in March 2024. It took until July to actually see the direct deposit. It was a large amount, even with my lawyer’s fees taken out of it. I was terrified that someone had made a mistake, but the lawyer assured me that this was indeed what I was owed from 2022 and 2023. I put most of the money away somewhere I can barely touch it, because who knew what I’d have to pay for taxes. And at that time, I had no idea that my tax situation would become even more complicated, filing married-jointly with a deceased spouse. Making an attempt to fill out the tax returns myself, it looked like I would owe about $8,000. I’m extremely glad that I called the Aging and Disability Resource Center instead of relying on my wonky brain because thanks to their advice, in the end I owed less than $400 to the IRS and got a refund from the State.
Before the ADRC mentioned them, I had never heard of the Goodwill VITA program (VITA stands for Volunteer Income Tax Assistance) but their brochures also showed up at my public library alongside the paper tax returns, and I’m so grateful they exist. Anyone who can’t afford an accountant or tax consultant can use the service for free. The volunteers know their stuff every bit as well as any tax professional, or at least the woman who took on my case certainly did. (Me and my mom; she also needs a lot more help these days with this sort of thing.) All you do is show up for a 15-minute intake appointment (ours was in a little training room at the northside Goodwill) where they gather all the details and documents they need. They’ll call you when they’re ready to file the taxes, at which point you go back to Goodwill and go over the returns with them, and they file them only after you’ve approved everything.
In my case, when the volunteer started working on my returns and saw the SSDI situation, she called me right away and said “There’s a way you could pay less on that lump sum. You might pay $1000 if you just file a 2024 return… But if we also file an amended return for 2022 and 2023, you shouldn’t have to pay as much because it’ll be spread as income over those two years. Should we give it a try?” I was shocked. Well, first, my math is even worse than I thought; I was off by thousands of dollars. But also, it didn’t seem legal. It is, though, and the sad part is that I simply didn’t remember that it was. The lawyer actually told me about this last year, as I discovered just now looking through my massive SSDI folder for this post. Some notes from our conversation were stuffed into the scary little handbook from the Social Security Administration that made me call him to begin with, worried about whether it was OK for me to have a retirement pension and SSDI. (The answer is yes.) And the ultimate proof is in the fact that I’ve already received the refund I got from the State, which covered what I owed the IRS and left a little over. I’m breathing a little easier now, but I can’t say that I’ve relaxed.
(I’m not sure what “they will send me the form” meant; nobody from the IRS sent me a thing about amending my taxes.)
There’s a really disturbing fact that was circulating in the news earlier this year: approximately 30,000 people died in 2023 while waiting for their SSDI case to be decided. That number comes from testimony presented to the Biden administration by Martin O’Malley, Commissioner of the Social Security Administration, before the Senate Committee on Budget. Even before Trump 2.0, the SSA was in trouble, largely from understaffing. O’Malley stated that the average wait for Disability applicants was “nearly 8 months (231 days this fiscal year through August) for an initial decision and almost 8 additional months (230 days) for those who request a reconsideration. In some States, these numbers are a year or more.” As you know from this series, my case took two and a half years. No one applying now is likely to have it easier, though I hope that in sharing my experience I’ve managed at least to convey one critical point: if your application is denied, don’t appeal; find that lawyer and ask for a hearing. The present administration would like us to believe that there’s no point applying. They presume we’re gaming the system. (And yes, some people are.) And even if they know we’re not, I really do believe they hope, as the rich have since the days of Charles Dickens, that we just get on with dying and “decrease the surplus population.”
Apparently there are at least 30,000 people who can’t be hurt by our dysfunctional healthcare system any longer. I was one of the lucky ones. But I’ve been training myself away from the “Other people have it worse” mindset because I know it’s part of my social conditioning to question the severity of my illness. That same conditioning has made me believe, even after a judge has agreed with my doctors and the evidence of my own daily lived experience, that there must be something wrong or illegal about receiving the benefits I’ve earned (and paid into) and they could legitimately be taken away at any time. All of that has to stop.
Now that my government has been brazenly taken over by billionaires with no regard for law, fairness, or basic humanity, and SSDI is very much in their crosshairs, I find it even harder to justify making myself even sicker by living in that permanently clenched, cringing state. I’m infinitely angrier now than I am afraid. And I’m thankful for the volunteers at places like Goodwill who can help with things like taxes so there’s a little more free space and fuel in my spirit to advocate for myself and others. It still isn’t a lot, but it’s more than it was. I wish I’d been able to write about it sooner, but maybe it will help someone next year. And I hope if you’re at the crossroads now that I was at in 2021, you take this as encouragement. It won’t be easy, but you don’t have to go through it alone.
An earthy cup of pu-er, brewed in a kettle of cast iron steeped in wood smoke,
sipped in the safety of a sun-soaked kitchen at winter’s scrappy end—
feels like a message from a very near future where my hands are in the soil:
“Spring is a poem we must write new every year.”
***
This may feel vaguely familiar to one of you, since the only times anything like a poem comes to my mind is when I’m talking to a friend. Though I can’t vouch for its originality; I feel like the last stanza was said already by someone else (probably also one of you!) but searching the web turns up nothing but e.e. cummings’ “Spring is a perhaps hand”—which is great because I love cummings, and depressing because I forgot about that line, and seemingly every line I’ve ever memorized. The upside to memory loss is that everything feels like a discovery, albeit one unsettlingly seasoned with déja vu.
‘Unsettled’ is a good word for now. In the spirit of the world, and in the spirits of people close to me, and most exhaustingly, in my own. Something about this spring, when I catch whiffs and glimpses of it, feels as much like an insult as a reprieve. I know this is grief’s work; survivor’s guilt. I’ve been channeling the constant arc between restlessness and torpor through a character in book 2 of the Coruscar series who’s also recently had her life upended. It’s a lot easier to write prose right now, even if it takes me a hundred times longer than it should once did.
I don’t seem to be able to sit still long enough for my mind and hands to make art, or even to read—although I have discovered a solution to this is reading a text-rich art book like Phaidon Press’s monumental Ocean, which I found at the library but since bought (used, for half the price) because I’ll never finish it before it’s due and I want it for all kinds of artistic inspiration down the road. (I will have to write a post just about all the discoveries I’ve made through this book; maybe a series of posts because they are many, and I’m only a quarter of the way through.)
Also, most fortunately, I can still notice nature. I can still be startled, for example, by an ice storm, and its aftermath in the morning–not hail, but something like a million shards of glass from some colossal car crash. It was an unceasingly violent wind last night, and I felt very close to being haunted by something malicious. The wind, constantly but randomly knocking at the windows, was so loud I must have gone to check if something had broken them open twenty times. It seemed to walk through the house, knocking over invisible vases. But my gauge for danger (supernatural or otherwise) is Claudio; if the cat is unbothered, there’s no reason for me to worry. He slept through the whole thing, waking only to put his ears back and look at me as though the noise was somehow my fault—as was the fact that the back door was frozen shut this morning, preventing him from going out.
Since my last post I have had some nice things happen. I’m grateful to Candice Daquin, master poet and consummate editor, for getting a beautiful review of To Tune the Beast published in World Literature Today, which I’ve since subscribed to because it’s excellent, and more affordable than Library Journal, and I have so many more books to acquire and take years to finish… I’ve seen friends, and been out in the Afterdark (as the Coruscarians call the People’s Music scene) to hear bands—mostly Celtic, though there’s a conjunto from New Mexico, and a modern classical trio that I’m looking forward to seeing next month. I’m becoming a better musician even though there, too, I can only practice so long. Even making joyful music hurts. If I pull off a new fiddle tune, I’m stunned by how good it sounds, and how easily it came, but then I’ll break down when I imagine Steve saying, always so earnestly, “Why are you so surprised?” In death as in life, he’s only an encouraging force, especially as I get better at the piano, and start to understand all the things I had to ask him about over and over again until the music in Coruscar seemed authentic. Somehow we’ll see it through to Book 2.
I will likely be focusing on that too much to post here, but I want to thank everyone who’s popped in to check on me in one way or another. None of us are okay right now, but I’m thinking of you all, too, and the message from spring says we’ll endure.
I can’t quite get over the fact that I’m sharing a table of contents with Haruki Murakami!
This review choked me up. The last bit is absolutely what matters most: “a deep love of music and its potential for everything.”
At the Railyard visiting my favorite mural, by John Pugh, on the flip side of the Jean Cocteau Cinema
Returning to Santa Fe only four months after Steve died felt emotionally reckless. After all, I cancelled the train tickets we’d bought for this May because I knew that would have been too much for me, so what made me think a flight out there, even sooner, would be any easier? I don’t know that much actual reasoning took place—I was under the influence of that flight in the Cessna, and then the right friend offered to watch my cat—but now, having been there and back again, I can say it was the best thing to do, and I went about it the only way that would have been possible.
The logistics of the trip, which I took with my mom, were the most daunting part. This would be a test of whether I could fly anywhere at all anymore, with my current state of MS. Traveling by Amtrak has its own drawbacks, but it’s relatively accessible, and the security situation is not burdensome. But since I have aspirations to visit friends overseas, and other places I can’t get to by rail, the time was right for a short experiment. My first finding: next time, I will need to find a travel agent. Somehow the task of making arrangements fell to me, and I managed not to screw it up even though the carry-on baggage rules are extremely arcane, and I kept making things more stressful by second-guessing what sort of seats I’d bought. But the major discovery of the trip was definitely Wheelchair Assistance. I will never again be without it. It was helpful even in the two small airports we started from on each end of the trip, where just going through security flared me up to the point that I was only just barely able to stand up in the body scanner. But in the Denver airport, if I hadn’t had that assistance, I quite simply couldn’t have made it.
My mom is entirely mobile, but the next time we travel together, I’ll tell them she also needs assistance in the hopes that they’ll give us a motorized ride. As it was, it was just one wheelchair pushed by an attendant, and I can easily believe that the guy who got us from gate to gate both times we were in DEN walked 14 miles a day. Poor Mommo had to be on foot along with him, though she could occasionally use the moving walkway—something I can’t manage anymore. No walkways, no escalators. Elevators are necessary if there are too many stairs. And to get from terminal to terminal, we had to take a tram—another thing I could not have done without help. Which depressed me, but not for long after we were airborne again. I hadn’t missed being on a crowded passenger plane, but being back in the blue again, over the mountains and canyonlands, was medicine.
Mom got the window seat to and from Denver, but I had to see the approach to Santa Fe and the departure from it. Coming in, I devoured the landscape with my eyes, especially when I realized we were looking down on my beloved Rio Chama and the Piedra Alumbre around Abiquiu and Ghost Ranch. That was the first of many times during the trip that I found myself mentally asking Steve Are you seeing this? But often during the days that followed, I either forgot to ask this or consciously did not. I knew the answer was yes, and also, the most important thing was that I was still alive to see it for myself.
Ultimately I made this journey because New Mexico is where I feel healthiest and most whole, and true to form, my symptoms lessened after just a short time at that altitude with the sun on my face. And even though I wanted to show Mommo all my favorite places, I wanted even more to discover new ones. This was meant to be a trip for the living. And it would involve participating in Las Posadas in Santa Fe, something I’d always wanted to do. (That article, alas, is from a time when the people saying “There’s no room at the inn!”–or rather, “¡No hay posada!”–were devils; now they’re just mortal innkeepers, but they still really get into their parts.) Nothing disappointed. Serendipity directed us more often than habit. And with the exception of the first day, when I scattered a small amount of Steve’s ashes in the river, telling him not ‘goodbye’ but ‘welcome home,’ I didn’t feel sad. Everything felt unique, with that special Santa Fe quality of being timeless yet full of the unexpected. Having all my old haunts made new by being dolled up for the holidays was endlessly delightful, especially when magnified by my mom’s unapologetically childlike wonder. Even when she was missing Dad (as I was too; he never got to see this part of New Mexico and he’d have been captivated by the art), the magic of the place prevailed. They don’t call the state ‘The Land of Enchantment’ (or Santa Fe ‘The City Different’) for nothing.
Mommo on the Plaza, before the crowds came for Las PosadasClassic Santa Fe architecture under a classic Santa Fe sky. It’s also the inspiration for the balcony at Smaragda Keep (in my book To Tune the Beast) where Sursa and Malac become friends.
So now that I’ve seen that I can deal with air travel, with certain modifications, it remains to be seen how I approach any future travels. Those won’t be for at least a year, probably, for various reasons including financial, but I need to talk to the National MS Society about travel agents who specialize in booking trips for disabled travelers. I always avoided organized tours when I was able-bodied, but I’m pretty sure they’re going to be necessary for anything overseas. Ideal would be if there were companions for otherwise independent travelers, but I’ll have to look into that as well. And there are books to read, I know; Sylvia Longmire, who also has MS, has written quite a bit about her world travels. If anyone has any resources for me to consider, I’d love to hear them.
Anyway, now that the holidays (for me) are winding down, I could use some time at home just learning what home is for me now. I’m not really built to stay in just one place for too long, but I’m looking forward to having the whole winter ahead for imaginary voyages. (I have a few books in mind; I might share them here as I read them.) As we approach 2025, the year of The Hermit in Tarot numerology, I wish you kind dreams and pleasant travels on whatever plane those might occur.
Having voted weeks ago, on this Election Day I’ve resolved to leave the TV screen black, and the radio stumm. No voices have been allowed to slip through the stereo’s speakers except in song. A day to play an instrument or better yet to be one, in harmony with the decomposition around me. The day’s weather is favorable for this. The air is warm and heavy and wet and smells like the richest possible compost. This morning, the ghostly sun seemed to sail with such spectral stealth behind the clouds, you could’ve mistaken it for the moon. My only hope for the coming days is that we’re allowed to break down what we’ve been given into something that sustains us.
It was an even windier day, but a sunny one, when I was up there a couple weeks ago. Up there, literally, in the clouds, in a Cessna 172 Skyhawk II assembled in 1968, with my Cool Cousin and Cousin-in-law and a pilot who was clearly doing what he loved most in the world. The story of how this half-hour flight came about is less important than the significance of the experience, especially considering that the last time I’d traveled with my cousins in any kind of conveyance was when I left my partner’s mortal remains with strangers, in a city 75 miles away.
Photo: Lake Mendota from about 1500 feet
There’s a line from To Tune the Beast that came back to me shortly after we touched down, which struck a chord I didn’t notice when I wrote it. My character Mica, in an excerpt from her memoirs, is talking about her childhood habit of climbing the towers of the Academy of High Musical Arts partly to dance with death but mostly as a way to transmute the cruelty of her environment: “…ultimately I think I was following a well-established instinct when I was first compelled to scale those structures evening after evening, discovering all the clever little handholds the architects had built into the stone. I was driven to climb not to escape my life but to get above it for a wider view.“
Writing the book, I became aware of most of the aspects where Mica reflected some facet of myself. But until that flight, I’d never realized how much her acrophilia was rooted in me. I’m not convinced that I’d jump from a Core’s back as eagerly as she does. That’s barely 100 feet, and Mica, whose Joffeen name is Half-Raven, would gladly go higher. But I think I’d feel at home up there, and even higher, if my rigging was secure. The thing that struck me most immediately, from the second we were airborne but especially when we reached about 1000 feet, was the sensation of cominghome.
Photo: We have an unfairly gorgeous collection of lakes…
My personal history has everything to do with this. From my early teens into my late twenties, thanks to my father’s willingness to do the worst possible jobs for the airlines just to get discounted stand-by tickets anywhere they flew, I was up in the sky a lot more regularly than the average person. Several times a year, I was in an aircraft, for as long as 15 hours, over land and sea. I did not enjoy the experience of being crammed into “airbuses”, and towards the end, I developed serious claustrophobia and an inability to tolerate a flight longer than 4 hours. But I never had anxiety during a short flight in a smaller craft. I was only too happy to take a puddle jumper over the Driftless Region between Madison and La Crosse, or a regional jet from Mexico to Costa Rica—as long as I got a window seat. I never got to go up with my uncle when he had his pilot’s license, but I was able to ride in a helicopter once which I thought was the best thing ever.
Presently, I disagree. Until I experience a hot air balloon, or my friend builds the airship she really should be piloting, it’s a Cessna for me, all the way. There’s nothing like the peel up from the tarmac, then watching one’s winged shadow—transformed but still unmistakably yours—rise and glide over everything terrestrial. Watching trees reveal their true colors, or the lakes (all the beautiful lakes) etched by the same wind rattling your walls and windows, from above. Nothing better than the pitch and dip and tilt of passage through the quantum field we so misleadingly call space, or the bone-rattling skid of landing—followed first by a cheer for the pilot, and second by a ferocious determination to getback up there again, one way or another, soon.
I was, of course, perfectly conscious of my fragility at that altitude. But if I said to myself once—and I did, exultant as we banked, up nearly changing places with down, and the windswept lapis lazuli of Lake Mendota washed over me—“I could die here, in a heartbeat,” my next thought was, “but I won’t.” The thought comforted me, and surprised me a little. The utter confidence of it. Even if I had no real control over the danger in that situation—or any situation, even crossing a busy street—the sense of rejection was striking. It’s this sort of thing that I’ve been recording in a journal since September, a sort of more-or-less real-time response to Didion’s Year of Magical Thinking from the perspective of a writer with major depression, whose mourning is complicated by the fact that they think about their own death every day.
Photo: One of the riskiest shots I’ve ever taken, in New Mexico near Bandelier National Monument. High winds and no guard railing. Not advisable.
When Steve and I used to hike in the high desert, I used to drive him crazy with my need to get as close to the canyon’s edge as possible. MS caused me to change that behavior. I knew I was no longer steady enough. But I still insisted on finding the farthest point to safely hang over the void. Because it compels this behavior in people like me. It’s so easy to die there, and yet you don’t. You don’t because dying would mean an end to looking into that seemingly infinite expanse of earth and sky. To stare into time itself, while ravens careen through the present oblivious to any other tense. That was where Mica was born, and I’ve thought of her often since the flight. (Tuners call their sometimes-accidental falls from the Beasts flights.) One of many thoughts simmering in the creative slow cooker that is November.
I’m proud to say that I’ve finally managed to break free of the sense that I “should be” working on the second book right now, or any literary projects that require that level of clear-headedness. There is a lot going on in the world of the Beast. Every time I pick it up, it’s like the hat I’m trying to knit and have had to start over five times because I can’t get my fingers and my brain to work together and I’ve dropped a stitch or knitted two together in the wrong place. At these times, wise writers fall back on research.
One of the elements of that research is a flashback storyline that takes place in ‘Twelfthmoon’—a month I’ve never experienced personally in northern New Mexico, the inspiration for Coruscar. Not coincidentally the day after I went up in the Cessna, I made up my mind that I need to fill that gap in my knowledge. I bought tickets—plane, naturally—for me and my mom to be in Santa Fe just for a few days in December, around Las Posadas.
Next time I write here, I’m sure I’ll be sharing some of that experience. For one thing, this is a blog about MS, and I’ll be traveling with wheelchair assistance for the first time. (I have it on the best authority that it’s going to be a game-changer for me.) But this is also a blog about literary therapy for This Bastard Thing (as my friend Doc famously named it), so I’ll present my findings accordingly. You can be sure that, for at least part of the trip, Mica will get a window seat.
This song became an anthem while finishing the Beast, but I can’t say whether it’s Mica’s theme or Chalcy’s or theirs together. Fear is the window, either way.
Fairy of Disenchantment 