I've been trying to think of a way to get my thoughts out correctly for a while now. A few days, really. I think I straight up just cracked, for a bit there.
I'm still not sure I'll be saying everything the exact way I want to, but I need to try. After all, you all deserve that much.
Apologies as it's a long one. I've once or twice been told to work on my brevity when writing. Can't seem to do it for this one, at least. If you don't want some mush-y IRL sad-sad, you don't have to read it, I get it.
It's been a good few years now, of me caretaking for the parent. Originally, it wasn't even needed. I was going out, trying a few job interviews here and there, trying to figure life out after finishing college, while they went to work. Occasionally visiting with friends. Overall, a relatively lackadaisical life, with the quest and writing on SV/SB being the thing I did a lot, but we also went out a good bit. To the movies, to a friend's party, dog sitting. Something I did not appreciate the magnitude of which at the time. The peace of it. The parent still had to do the dialysis, sure, but they could do it at home. I helped carry the boxes up the stairs/elevators, but that was it. I helped cooking now and again, laundry, cat care. All while they went to work, came back, etc. Even during covid, we were mostly okay, the parent was able to switch to remote work, and so on. I didn't appreciate what was had then.
Then the parent's eyesight started to go. Not too bad, not at first, but they had to basically fall back to using one eye, and blowing up the text on their screen hugely to be able to work. We learned it was a type of incredibly rare lupus-related inflammation to the eyes, and got put on a new medicine.
Which nearly killed the parent by shutting down their bone marrow.
We switched off, switched medicines, switched doctors, and are now essentially consigned to a bout of non-oncological (non-cancer) chemo every six months or so.
When we moved to our new home, it was supposed to be a time of brightness and new beginnings, away from the stuffiness of the previous location and the neighbors and the like. It was slightly further away from my friends, but we could still make the drive. We were able to get all the various doctors located in the same general area, sharing the same information, rather than months between different groups causing great issues.
Then the eyesight continued to decline. To the point of having to go out on long-term disability. Then the numbness, the stiffness, issues of mobility, started to get worse. Physical therapy was attempted, physical therapy ended abruptly as the parent got a very, very dangerous infection, especially for a dialysis patient - and then that infection flared up twice more every time we thought we had it under control. Which, in turn, caused issues with infusion chemo scheduling because you can't also be on antibiotics at the time. But through rote memorization, the parent could handle their dialysis...until they couldn't. So I had to take it on. Twice a day, morning and night. But still, I had something of free time during the day, I could still venture out, try to maintain connections with friends. I used to go to the gym for three hours a day, every day, in the morning, because I could actually spare the time to do that. Was even able to go to a wedding for a friend from college who is younger than me, in a different state! Which did cause some weird internal emotional issues I mostly managed to bury in favor of happiness for the friend.
But dialysis only ever works for so long.
The parent has by all rights exceeded most all medical expectations, because they've been on dialysis for some ten plus years or so. Peritoneal, rather than hemo, so far gentler on the body than it otherwise might have been. Had some residual kidney function, even. This past year of 2024, however, things just kept getting worse and worse.
Worse and worse eyesight, and now a development of Charles Bonnet Syndrome. Parkinsonism, though as of yet not wholly confirmed. Spinal stenosis in two locations. Ever greater pain, wincing, arthritic and otherwise, with steroid shots and epidurals doing nothing at all. Hauling the wheelchair into and out of the car, driving to doctors sometimes multiple days a week, and constantly, constantly never having any good news. Only a grinding wheel of 'We have to hope the medicine works' and 'We're not sure if this will work' and 'So this didn't work' and 'Well at least it's not getting too much worse too fast'. Accompanied by several absolutely heartstopping falls, one of which occurred at three in the morning because the parent tried to go to the bathroom and got out of bed too quickly and is quite literally incapable of getting up from the ground without aid, and resulted in multiple stitches in their head, their blood all over my hands, and a wretched fear of me not waking up in the middle of the night for a desperate call in case I was ever too tired making me sleep uneasily and far too lightly for weeks afterwards. Before that, blood in the dialysis solution, a rush to the emergency room, days in the ICU, discussions and murmurings of scar tissue buildup and internal bleeding and other issues. Sometimes we ended up in the ER because of the parent's anemia and needing a blood transfusion just to make sure they didn't, I don't know, just not wake up in the morning. Every infection means damage. And the parent has already had the dialysis catheter removed, replaced, removed, replaced, and moved around again, with one absolutely awful experience being a 'simple' removal and replacement surgery taking five extra hours of me biting my nails in confusion because of an internal infection that required...significant infected tissue removal. And that was back in 2023.
But there was a light at the end of the tunnel. We were discussing some surgeries on the shoulders that could allow them to raise their arm above their neck height for the first time in years. Spinal surgeries that could allow them to, wonder of wonders, walk again without anywhere near as much pain.
And then the kidney function reduced further, and we had to start doing three exchanges a day. Morning, noon, and evening. I wake up to prepare breakfast, lunch, and dinner, organize pills, bedding, laundry, and also prepare antibiotics and other medicines as needed. Every exchange, if all goes well, takes about an hour average accounting for helping the parent get up and sit down, longer if there is some sort of inflammation internally or the like and the fluid exchange is slowed for any reason.
My life narrowed, more and more and more, and I sort of just tried to keep going as if I was fine.
I was not.
I'm still not.
By the time 'morning' things are done, it's always past ten, unless we need to go to a doctor, in which case we do it earlier so we can go to a doctor and be gone from home for two to three hours, come home, do 'noon' exchange and things, and so on.
There are some days where my only time that I can exist, in my own head and body, is after the day is over, and I'm just so drained I can't do anything but mindlessly watch Youtube or something before falling asleep in bed.
Let alone...write.
That thing I've been doing for so long. That thing that has managed to keep some people interested in what I do for a long time now. Some have left. Some have stayed. Some have arrived anew. It's been the greatest blessing of my life, I think, because as everyone else started to move away, or get caught up in their own lives, this has remained. Sure, some of my quests didn't, not all my writing did. But people knew of me, for better or for worse.
But when the parent came down with another infection, clear as day during the dialysis (the bags literally have a section that is transparent so that issues can be identified, aka, go to the ER or dialysis clinic ASAP if you see this, this or this), on New Year's Eve??
I just...broke.
I have taking care of the parent, and I have writing, and the occasional online Pathfinder/D&D session with some friends that I can't even see anymore in person most of the time on Saturday nights. And that's...it. That's all. Everything.
And for a bit there, I just could not stop obsessing over the fact that the former cannot, will not last forever. They just can't, and they've accepted as much a lot better than I have. No one else in our family stayed, or came up or down. It's just me, and a family friend nearby who is retired and also trying to live her own life with her own children and dreams. If their current dialysis has to switch to hemo, the amount of time they'll be around may well drop precipitously, but even if not we'll maintain with a brand new but still rough schedule with higher risks of infection and issues with surgeries. If by a miracle we can get a kidney transplant, that changes things. But given the myriad health issues of the parent, it's not like we'll be getting top priority. Or even medium. But even if they stay on their current dialysis, that still means times like this. Hopefully for as long as is comfortable for them, which might be quite some time indeed - one hopes, at least.
So I took to the streets. To the sidewalks. Pacing, pacing, walking, hours and hours, because to be in the house suddenly felt awful. Acidic, even. Like I was drowning. I came back to make food for the parent, for the exchanges, but aside from that literally just sitting in my room I felt like my heart was going to tear its way out of my chest, my lungs were collapsing, and I just had to get out, and get moving, and stay that way. Blisters bloomed on my feet, and I broke them as I kept going, until they reformed, again and again until I've gained some brand new calluses. My hands have rough red scaly patches on them now which I'm reasonably sure are exposure issues from the cold - it's been 30ish out here for a while now, colder and worse with the wind in the early morning and evenings. Just trying to process, or no, not process. To drown it out, all the fear and the childish internal wail of not wanting a parent to leave, to confused and distressed animal of routine who felt the danger of disruption looming more than ever before. The absolute rage that I can't stop a disease or disability. That the doctors, so many doctors, can't either. Stopped eating almost entirely, still haven't really recovered an appetite.
And eventually I talked to the parent about it.
And some friends.
And now I'm somewhere in an uneasy but stabilizing equilibrium.
Part of the issue, as it has come down to, is a sheer sense of incapability to do more or be more. The ever fluid medical schedule of the parent and my connection to it means that a lot of paths are relatively closed to me. I can't go too far or spend too long out because I have to be able to come back in case of any kind of emergency. It's possible to get, say, a home assistant for such things, but that requires funds, different access, a whole other shebang. Matters of trust as well, there are not great stories about some elderly care assistant people, either ones you bring into the home or the one who's care homes you send loved ones to.
But I can write.
I can do that, at least, right? I can't proclaim to the best, not even close, and...yet.
Some people even like the things I write. A lot, even, sometimes.
I've been thinking hard about it. Really hard.
I'm plagued by feelings of inadequacy, of fear, or not being good enough, and worse.
But if it's really one of the only things I can do, then my god, it might well be one of the only things I can do.
We don't live in a perfect world, and we certainly don't live in one with a universal minimum income.
And I've got, well, quite a chunk of time on my roster that does not include working a job that pays into Social Security.
So I need to start trying to build up savings of my own, somehow. To shove it all into a Roth IRA or something, or more than one, and just kinda fucking hope that there might be something at the end.
To conceive of a livelihood, a real one.
As such, I've been thinking about opening up a Patreon. Not entirely sure how it would work, other than as just general support for a writer ya'll like. Might look into doing commissions, as well as other fiction writing. Some of it purely original, some of it perhaps not, but stuff that I could reasonably point to and say, hey, look, early access to a chapter here and there. Because part of the issue between quest writing and non-quest writing is the fact that for the former I can't just plot out something and write thanks to the dice. Haven't actually set it up yet, I'm just letting you all know that I'm going to be.
If you disagree with this path, I understand, I just hope you understand my reasoning as well.
Everyone's got their own struggles, after all.
Thanks for listening to mine even if it's just for a little while.
