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I don’t know if I did the right thing moving here. And fuck scleroderma and last year; I could have stayed in my wonderful loft, kept going to at least ArmadilloCon, had friends and eaten out, gone to movies, to the botanical gardens, to hear friends play music sometimes…but for the fucking scleroderma. Those two hospital stays and how terrible and hard the issues with my body were…PTSD, for sure. A lot of fear. And damn my fucking friends (yes, I was and am very thankful to them, for all they did…but) for making it clear to me I was being a burden on them and had to make a change and pointing to assisted living…of course I wanted my sister instead. I needed emotional support as much as physical and I needed both very badly.

Now I’m here with no support other than my sister, so when she gets snitty (which she has every right to do) because of a migraine and/or Tinker’s bad behavior (he poops on rugs, despite my keeping his litter and the pads beside it clean as can be) and snaps at me to ‘stay in your room’ cause she doesn’t want to discuss something…my world feels so small and I feel so over and I did it to myself by moving here, selling my loft. Now here I am, my whole world of 34 years left behind. And I’m afraid of travel and of going to a convention, because getting covid, at a convention, is what kicked off the fall of dominoes that sent me to the hospital. And I fucking never want to go through it again.

I don’t want to feel over, but I feel over. Never go to another convention again? This coming weekend is Armadillocon and it’s the first time I won’t go at all since like 1996.

I do virtual things, have a regular writing hang…but it’s just not the same. Can I make community here? Do I want to? I don’t know. It’s not like scleroderma is going away. Or covid, apparently. I know why I did this, but arrgh and wah and extra double wah.

I know I have a lot to be thankful for. I’ll get back to feeling that anytime now…this has just been a cry/be angry/confused/hopeless feeling day so far.

I really feel the loss of luster and engagement in writing. This feels...different. It's making me so sad and bereft. Writing has been a deep well of energy and engagement and joy for me since I was nine years old, with me all my life. Add to that everyone going to WorldCon and having lives...

I feel so left behind and so....waaaaah. I know I need to pull myself together, relax, just keep on. I mean, either it will come back, that luster and confidence and joy, or it won't. One has to find the joy there is, not forever lament that which there is not. Like able bodied-ness. Certain kinds of success. Excitement and engagement in one's writing.

Oh feh. I will cry and pet some cats and wah as necessary, I guess.

On the good side, I finished a short story, the first thing I've finished other than a flash and some poems, since last year's hospitalizations and physical struggles.

And it's wonderful that a new edition of Substrate Phantoms is coming out, and I'm working on the sequel...

But lord I feel so tired and pointless. The publishing world and and the reviewing strata do not love or celebrate my work; no awards, little support on social media, I just feel...tired and unappreciated and, yeah, pointless.

I know it's a matter of perspective, and also that this is depression...the ongoing medical shite of my life with systemic sclerosis with lung and GI involvement and messed up hands is, well, a lot. Exhausting. It would be nice if there were more wins and celebration for the writing, I guess, is what I feel.

I'm just so tired, y'all.

In the early mornings I’ve been hearing geese honking, crows, and a woodpecker, here or there at one of the tall trees, knock knock knock. I miss the sound of white winged doves, so gentle. Yesterday evening we drove up to the place of one of my sister’s friends. Up through steep, deeply wooded—such tall, tall trees—and winding roads, so shaded in places there was still snow at the roadside, though the temperatures have been up in the low 60s in the afternoons. We sat at the friend’s fire pit, talking. The coruscating embers of a heap of pine cones in the bottom of the bowl of the fire pit drew my gaze, as embers in the fireplace held my attention when I was a child. Off the friend’s deck, on the other side of the house, where multiple hummingbirds availed themselves of the sweet water she provides them, was a drop-your-stomach view over a valley to a mountain ridge, layered in endless-seeming pine, madrone, and fir.

Looking it up, I find the forest here includes such enticingly named trees as sugar pine, incense-cedar, white fir, and black oak. Words of slow conjuration, words of story.

The first time I moved to California, I was 16 (I dropped out of high school in 10^th grade) and went with friends of my mother and stepfather as a passenger in the drive across the country. We landed in South Pasadena and after some uncertainty, I ended up living with lovely people who’d known me as a child in Philadelphia. I got a job at the Rialto theater, which has featured as a setting in a number of films (the theater in my story “Nights at the Crimea” is based on it), played D&D with the guys I worked with there, met many amazing people, did psychedelics while camping in Joshua Tree, and wrote a lot of journal entries and bad poetry.

After two years, I met a woman named Feather who invited me to come work for her. The work was helping to make the wares she sold at the two California Renaissance Pleasure Faires, one in Agoura and one up in the Black Hills of Novato. Between fairs, we ‘lived’ at her father’s import warehouse in southern California, stirring the unguents and edible massage oils in vats like low-rent witches, then camping (almost glamping before that was a thing) at the fair sites for the six weeks of their runs, and a week or so on either side. The weekdays in between were a different sort of pleasure, running about, talking to super interesting people who lived their lives making art of some kind and doing fairs. Between fairs, we floated from one friend of Feather’s to another, living nowhere, just camping here and there. We also drove to Texas to do the fair in Plantersville between Austin and Houston. We had some adventures on those drives.

About another two years into this, Feather started drinking a lot and when she drank, she got mean. I got out, and getting out led me back to the east coast to live with my mother and sister and their respective partners for a time.

The second time I moved to California, I was actually living in Austin, post-grad school. I thought my graduate degree in creative writing and my two post-grad fellowships working at American Short Fiction meant I should find a job at a magazine. I dunno; that’s what I thought. I went to live with a good friend from college, had fun on the drive in the moving truck with a good Austin friend and the moment the truck was unpacked and I sat down in my new room I thought, oh dear, this was a mistake. I stuck it out for six months, spending all the money saved from my fellowships, not wanting the jobs I was interviewing for, and feeling pretty lonely. The friend I’d come to live with happened to meet the man he would end up marrying shortly after my arrival, so he wasn’t around very much. My other friends there seemed far away and hard to spend time with. San Francisco just proved too windy and cold, both literally and metaphorically. I went back to Austin and have lived here ever since—almost 34 years, minus six months, more than half my previously peripatetic life.

The upcoming move to California, to the foothills of the Sierra Nevadas to be with my sister, will be my third. The charm, we hope.

Mornings are better, generally. Late afternoon and evening, that old dis-ease and fear, acute and pervasive, comes over me. When I breathe into it, I often end up crying.

Some of the resurgence of this old (by which I mean, from my childhood) anxiety phenomenon is situational—coming off morphine and the continued cramping, over active going, and awful gas in my guts—not knowing if this will ever “resolve” (the hospital’s word) fully, given the presence of scleroderma in my GI system, if I’ll ever be able to enjoy food again without feeling sick or super uncomfortable after eating, if I’ll ever get to the end of a day again and actually want or enjoy dinner, or if this new difficulty and unhappiness around food is for the rest of my life. I cried myself snotty and silly last night over this, after a long late afternoon and evening of pillow hugging and weepy anxiety.

I just want it to go away, to get better. It may get a little better, it may. But it’s not going away, chronic illness and disability are with me to stay. I don’t like it, I don’t want it, I don’t want to worry that my fingers will get bad again and I’ll need strangers to come and help me so as not to wear my friends out, that I may end up in the hospital again (please please no). I am so scared and sad. I want my joie de vivre back, my heart and light and hope.

I also need to not be living alone anymore; my sister and I are trying to work it out, but not having a lot money and being in two far apart places is making it not easy.

And oh gods and paws and tree and rain spirits, I need to write, stories, my novels, I need to write and make art again.

Here’s the update after seeing the pain management specialist: he prescribed morphine tablets, and last night I slept, and I am so so so relieved to not be in horrible pain anymore, that I cannot express it appropriately. There’s still a very little pain and a good bit of itching, but oh my word I am so very relieved; I even feel a tiny bit of interest in being alive again. So woo hoo!

So here is my PSA, if none of your regular medical professionals gives you the pain medication you need (I don’t think they can prescribe anything on the morphine side of things anymore), and hasn’t suggested to you that you need a pain medication specialist, ask for the referral. For some reason for weeks while I was in pain, rheumatologist, GP, wound care doctor, none of them told me to see a pain management specialist. You guys told me and I had to ask for a referral. By which time I had been in horrible pain and not sleeping for two weeks.

First consultation appointment with pain medication specialist is scheduled for tomorrow. That was the earliest I could get at any of the clinics I called.

Yesterday morning my hot water heater, which I replaced six years ago, burst. Waterfall rain all into my utility closet over the washer dryer cat litter, flooding my kitchen.

And I've got a yeast infection I can't treat because my gory, wounded, hurting fingers are all wrapped up in bandages.

I feel like I'm cursed. If any of my friends feel like doing some sort of ritual of curse lifting or good fortune or blessing or something for me, please do.

I’ve had such good kind beautiful help from friends and neighbors and from some home nursing professionals for the bandaging. But at night I am alone with pain for hours on end. And it’s not pain with a purpose to heal me. It’s not pain to produce a new life. It’s just pain and I’m alone with it and I can’t see when it’s going to end.

I have done lots of breath meditation and watched a lot of things to try to distract myself. There’s a point where all I can do is cry. My spirit feels pretty broken at this point. I miss writing fiction and making art.

If you are not alone with terrible pain, that no one so far has given you any help for, be very, very thankful.

My rheumatologist, GP, and every other medical professional I have seen have failed entirely to address proper pain management for me. The hydrocodone and tramadol my rheumatologist is willing to prescribe do not work for me at all. She simply refuses to even answer my questions about trying something else. My GP’s response was that I should go to the emergency room. 1000 mgs of Tylenol every eight hours is not cutting it. I cannot take ibuprofen because of my G.I. issues with the scleroderma. So there’s about 3-4 hours (allowing an hour for it to kick in after I can finally take it) out of every eight of the day and night where I am in so much pain that I am shaky, cold sweating and lightheaded. I guess they’re scared? Because of the 'opioid crisis?' But this is a serious failure and I am suffering because of it. I am really very angry at this failure. Sending me to the ER because they do not want to authorize drugs that will actually help with my recurring pain does not seem like a very good answer.

They have medical training; surely they know how many nerve endings there are in the fingers. This is doing me in.

I am working on getting a referral to a pain management specialist, but it's going to be a very long long weekend.

Living between dosings of gabapentin, Benadryl, and Tylenol, from one to the next, and still, in between, my fingers burn and itch and hurt. Making myself a zombie so as not to tear them up further and make things worse.

I cannot describe how tired of this I am.

The last finger had finally healed with a fragile new skin, after months and months, because scleroderma/Raynaud's ulcer wounds just heal very slowly, and then, thwap, covid, chills, prolonged Raynaud's episode, and my hands are a fucking war zone again. Everything I do, from bathing and dressing to food prep, dishes, trash, cat litter cleaning, and other chores, is difficult and painful.

I would not kill myself, because cats, and loved ones, and I still have writing I'd really like to do, if I can ever come clear of this state and not be a zombie again, but the thought 'I wish I was dead' has crossed my mind many times. Doing so much to try and manage this, and still it's so awful and I despair. I am so beaten down.

*unless you've had scleroderma/Raynaud's for over 20 years or are super familiar with it, I am not looking for advice. I'm doing everything I can, as far as I know through medical directives, support sites, and my own experience.

Moving forward with scleroderma, as it wrecks my system, is what I've been working on in therapy. The very much unwanted guest at the party, passenger on the bus, who just ain't gonna leave. Also doing OT for my hands. Meanwhile, rough Saturday night, Sunday, and Monday with the guts, and they're still not right, cramping and over correcting from the meds...you look up stuff about scleroderma and the GI system and "hard to diagnose" comes up on clinical sites. I'm in touch with my GI, but she's not super reassuring or helpful so far.

Whee.

Look, I have writing I want to do, visits to loved ones and cool, beautiful places I want to make. I'm doing my best. I really can't tell if it's going to be enough. Yesterday I meant to go to the Blanton museum with a friend after we had lunch, but I was too weak and shaky and short of breath to do it. Ditto going to walk around the store for my groceries; I had to order them online and do curbside pickup. Taking my recycling out this morning did me in for a bit. I had a pulmonary function test recently and the lungs are holding steady around 60%, so it feels like this has to be related to the guts somehow, but the GI 'cannot comment on the shortness of breath.'

Yeah. I'm trying. But I want to give up and cry right now.

In much of story, it’s generally depicted as sad when a female-identifying character does not find love, isn’t it? The narrative of romance with coupling up as the happy, proper, or otherwise desired ending is so ubiquitous and deeply entrenched in our psyches, so inevitably necessary to happiness and fulfillment in story, from novel to film to television series, that it’s a bit of work to see it otherwise.

Yet in the real world, I know a fair number of women, including myself, who live on their own, with community, friends, family, loved ones, but no romantic or even intimately platonic partner. We are what was once called spinsters—many of us by some combination of choices that were more or less conscious. It can be hard at times, as such a woman, not to see myself as sad or pathetic or failed—my culture and all the others around me tell me so through story over and over again. I am not that, however, and neither are many of the single, older women I know. We are beings living in the world, who find fulfillment and depth and meaning in life in no greater or lesser amount than our romantically hooked-up brethren.

So, if representation matters, where are the single, spinster, bachelor, disabled, ace, or aro women/other-identifying protagonists with happy endings? I suppose there’s Miss Marple. A few other female detectives of elder states-people status. This allowance probably owes more to the serial reset and repeat nature of the mystery genre and the demands and expectations it sets for the detective figure than anything else.

We’re woefully underrepresented. Some of us are fascinating people; some are heroic; some inspiring. We deserve stories that see and celebrate us. The romance of the self in community with the wide world and the other beings in it, two-legged or otherwise, is not just for male-identifying figures, but also for female, nonbinary, and otherwise identifying ones.

I am happy to celebrate your romances, matchups, the love stories between two people, in real life and in story, but would you please consider celebrating some other forms of romance, other kinds of life paths, without seeing them as sad or unfulfilled?

Lying in bed last night, I had a flashback to my very awful first ER sojourn, three months ago now, and how after hours there in pain with stuff coming out of me uncontrollably from either end, they sent me home trembling, still cramping, and for the fourth time dirty with uncontrollable d, without offering to help me clean up again, and after I'd had to listen to a mustachioed young man complain strategically loudly that he shouldn't have to clean up adults who've shit themselves, they should do it themselves. It was so early that no one was awake to respond to my texts or calls, the friend who’d come with me had had to leave a couple hours earlier, and I had to get a Lyft. I asked for a blanket so I wouldn't dirty the driver's car. Took me a while to get myself up the two short flights to my loft, where I managed to put some warm water in the tub and sit in it, trembling and very weak. I would end up having to return to the ER the next morning, after a day and night unable to keep broth or water from coming back out of me, cramping and barely able to stand.

So, flashback. I burst into tears and sobbed, acknowledging that I’m terrified of having anything similar happen again. But given the scleroderma involvement of my guts, it could. Hopefully, it won’t happen the same way, with the same dehumanizing circumstances. But.

After sobbing, of course, I had to get up to clear my nose so I could breathe. Bodies, man. And then I slept. Yay sleep! And now I’m working on being in the kind moments, cats, coffee, sound of dove coos, working AC. The other night I got to have a gorgeous dinner out with a friend.

I wish I felt braver, stronger. More hopeful. I am working on it--meditating, doing therapy. But.

I am afraid of it happening again, and I am afraid of fading out from this life without finishing the writing that’s in me, without seeing more novels published, without giving anymore or celebrating anymore, or being any more than a forgotten, stained footnote, if even that.

I guess maybe I can embrace being a forgotten stained footnote. Hello, I am your forgotten stained footnote.

Sad, angry, hopeless, uncertain, fearful…I have a lot of feels around scleroderma’s ongoing assault on this body I live in. I, me, this flesh, brain, organs…breath. Sometimes the anger or fear are so sharp they wake me from sleep; sometimes I wake crying. Occasionally I wake grateful that the cats seem well and happy and I get to be here with them, enjoying my little loft home that I got the grace to make for us, that while my hands will never be fully healed, they are better than they were some months ago, and the same goes for my guts, now that the sleroderma has fully involved them. Then there’s my lungs, how tired and out of breath I get doing simple household chores…

So. I am doing therapy, the psychological kind, as well as now, finally, seeing a hand specialist for OT (I should have been seeing one years ago, but no rheumatologist ever suggested it). These are good things. But.

Oh gods, the wailing in my heart, the sorrow and hurt.

There is no normal…showering, dressing, preparing food, all are fraught and difficult.

And then there’s writing, the actual process of which has always been a refuge, an energy giver, a reservoir and joy for me. The career side less so. Though sharing the writing is a part of its life, the emergent point of its existence. A glimmer of good stuff on that side in the midst of the hard weeks post-hospital has now dimmed, and my focus in writing is challenged by the gabapentin cotton wool I have to be in to not tear the skin from my fingers.

Am I tired? I am so tired. And there is no cure, no course of treatment, no other side or end in sight but the end. There are better days, stretches of them, is the hope, there are loved ones, sweet friends and family…

But goddamn, it sucks, this sucks. I want to be happy, to have joy and light in me, to give and share good stuff. I want to be able to travel, but it seems so scary right now, in the uncertainty of how my guts will react to it. I do not want to end up in the hospital again.

So I do the chores I can, take care of my hands, eat carefully, watch the light move across the windows, do crosswords, make digital collages, build beautiful weird things in sims, write some, read, watch stuff, go for walks and get out of breath, meditate. It’s kind of a victory that I can get myself to movies now, and watching a film in a theater is an escape I relish.

I need a hug, a huge hug that holds me and supports me and makes me feel safe and loved and cared for. And I could really use some wins, some unfading glimmers of light in the writing career, some good stuff.

Trying to sit with the uncertainty, the fear and anxiety of it, meditate with it…makes me cry, is what it does. I am here, doing my best. But man, this shit is hard.

I have now noped out of two versions of Pinocchio, despite the second one being Guillermo del Toro's and stop motion animation--a director and a medium I love. I think I don't like the story of Pinocchio--I know how it goes and don't want to go. Also, I think I am tired unto death of stories about fathers and sons. I have been, we have been, drowning in father and son narratives all our lives.

Give me daughters, girls, women, crones (trans women are women, btw), nonbinary adventurers, mothers and sons, sisters, and ensemble found-family teams. I think that's one reason I enjoy shows like Wednesday, I'm so happy to be with an interesting girl character, doing things in a fantastic world narrative about her and her friends--more girls, and a bee-loving boy with mothers.

Notes on a few stories that have transported, engaged, or entertained me pleasantly in the last while (with one paw wearing a sock to keep a painful finger warm and other depredations, transport and entertainment are exceedingly valuable to me), in various media:

Reading
Nghi Vo's Into the Riverlands - third in the Singing Hills Cycle; I love the cleric Chih and their traveling companion, the talking bird Almost Brilliant.

K. Tempest Bradford's Ruby Finley vs. the Interstellar Invasion - funny, fun, warm, and a kickass 11 yr. old science hero in Ruby

Ovidia Yu's Crown Colony mysteries, which I inhaled all in a row on a rec from Martha Wells.

TV & movies
1899 - super atmospheric mind fuck (Netflix)
Wednesday - I've seen a lot criticism of this, but I enjoyed the heck out of it (Netflix)
Black Panther: Wakanda Forever - watching four Black women kick significant ass in cinematic glory, what's not to love?
Slumberland - for the visuals of dreaming, and the Canadian geese (Netflix)
The Blue Whisper - Cdrama, so pretty, so fantasy (Viki)

It's been a...few minutes...since I wrote here in ye old blog. But here I am. My lungs are fucked. My guts are pretty fucked. Days and weeks get lost to just trying to keep the physical vessel afloat. It's very tiring being in this body. No one wants to publish my beautiful The Chambered Earth and all my current wips...well, writing is hard these days. Poems I can do, pure emotional language evocations. But the dedication and joy I've always had in writing novels and stories is dissipated in the bodily difficulties and the failure/disappointment I feel about the reception my work has gotten in the publishing community. The work that is published...no noms, no best ofs, no options...some reader love, for which I'm thankful, but... I want to get past this. I want to write and be in the joy I have in writing, until I die. I hate that I've let the publishing/award/buzz/commercial world take that away from me. I hate that my body is so full of struggle and pain.

Social media these days...I used to have some traction on Twitter. No more. So I'm processing here, by my lonely.

So that's the state of me. I could use some support, some encouragement, some love.

It's perhaps not surprising that I'm having a hard time making myself go out--to, say, exercise myself or the car or pick up some Ramen Tatsu-ya take-out ramen, even though I've been craving it. Contagions, pandemics--out of control deadly illness has been one of my bugbears, so disturbing to me I avoided all movies and books about it. I trace this directly back to when I was about seven and my parents, in the midst of their divorce proceedings, took me with them to see The Andromeda Strain. We went for pie afterwards. Well-meaning people, my parents, but some question as to their parental suitability might have been at issue. They're both gone now, and I can only wish for the memory of each to be a blessing.

Anyway. I had my first anxiety dream about going out, to a cafe, forgetting my mask and having a young white couple sit too near me, also sans masks. The upside of this is that I'm sleeping and dreaming, which equals processing, so yay, brain, doing the emotional math!

Downside, I think I'm developing agoraphobia.

Where: Malvern Books, Austin, Texas
When: Thursday November 7, 7pm
What: Celebration of the release of THE ARCANA OF MAPS & OTHER STORIES, my first story collection, from Fairwood Press

“Reisman (Substrate Phantoms) showcases her mastery of immersive worldbuilding in these 17 speculative short stories, which range from fable to space opera . . . they all center around a theme of connection, whether between lovers, friends, gods, or animals. Readers will enjoy sinking into the strange and lovely landscapes of this collection.” —Publishers Weekly

Squeeeee!!!

And look how pretty:

Reading this article on another study finding that cats do actually bond with their humans (which, y'know, duh, but okay), I realized that my abandonment issues (my mom left us when I was six and a half) have put me in an actual named category all my life (I mean, I knew they influenced me, my experience, perceptions, and behavior, but not the name for that).

Here's the relevant bit:

"...social creatures form two basic types of bonds to the other creatures they interact with, often depending on their past experiences. They either have a secure attachment to someone, meaning they feel heartened by the other’s presence and aren’t fearful of losing it, or they have an insecure attachment, which can manifest in other ways. If they’re “insecure-ambivalent,” they might be so afraid to lose that bond that they react by doing as much as possible to keep them close (you might call this “clingy” behavior); if they’re “insecure-avoidant,” they might be the sort of creature to avoid getting close to others in the first place."

There's only one human being with whom I feel complete "secure attachment"--my sister. With all other humans in my life, my mother included, I have always vacillated between "insecure-ambivalent" and "insecure-avoidant." No matter what I tell myself intellectually or rationally, or how I try to modify my behavior not to be either clingy or avoidant--not to be insecure in my relationships--I still always feel that insecurity, on some level. I worry that I've done something wrong and will be abandoned, found wanting, left behind.

There are a few friends with whom I have periods of feeling that sense of being heartened and unafraid of losing that connection and support, but the insecurity will rear its head at the smallest provocation and I will have to remind myself, this person loves you, it's okay. And also--even if they do abandon you, it's okay. You will be, you are okay.

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The Storyrain Blog

Fiction writer Jessica Reisman - www.storyrain.com

Recent Entries

fuck scleroderma

bereftedly, I stagger on

writing...

slowly

Three times to California

currently, 19 days out of hospital

Update and PSA

status report

a few words on the failures of my medical professionals

scleroderma sucks

the unwanted passenger/party guest

just a wee screed

more of that processing thing

this shit is hard

(no subject)

recent reading and viewing

(no subject)

Emotional Math

Collection Release Event

attachment, insecure