If there’s any positivity toward all of the chronic pain and severe disability I’ve experienced over the past 15 months, it’s that it can all inform “The Story.” Just today, I work up feeling gnarled, went to bed; had a spine pop at around 2pm, woke up, went to bed, and by 7pm had the second pop my spine needed to feel better. I imagined how Trishna would deal with that situation. It was the same.
Spoilers?: Minor [positivity through negativity]
This assumes a scenario where John and Trishna are a couple in a relationship.
I mention that because I’ve had thought experiments about whether they remain friends and don’t have a sort of relationship, and, it’s possible. So the way that relationship-them would wake up is that every morning, they’d wake up, and John would ask Trishna how she’s doing. Trishna was born with a spine issue that causes chronic pain. Most days, she can do well enough within her limits, but she can’t push herself if she’s in pain, so every morning, John will ask a variation on the same question to see how she’s doing. Most days, she’d be fine, maybe a little achy, but nothing terrible.
On a day like today, she would have said she wasn’t feeling well.
I only got out of bed because I needed to pee, then I decided to push on ahead to do more, but really, I shouldn’t have done that, since it just aggravated my body further. I realized that only after my mind started shutting down and I was feeling miserable. I took a nap but it didn’t help. I needed to sleep for multiple hours to let whatever problem was in my spine, fighting against me, to resolve itself. I’ve only been dealing with this for 15 months, whereas by the time “The Story” starts, Trishna will have been dealing with it for over 15 years. Trishna and John will be online friends for a few years until John is close to graduation, “The Scene” happens, and moves in with Trishna’s family. By then, they will probably be 18, so anything that happens from a romantic perspective might be told from that angle.
I only state that because Trishna would probably sleep on John’s side often.
The way spine disability works, or at least mine, is finding that spot that hurts the least and staying in that spot until it’s necessary to move. My doctor’s appointment in a few days might offer the start of long-term relief, and perhaps even a return to normal pain levels of 0/10 or 1/10, but that pain scale is beginning to prove irrelevant. The pain I experienced today nearly necessitated using pain management medicine. Was it worse than the days where I’ve used it? Am I to be celebrated for not taking medicine that can help – but doesn’t help – relieve pain? What if my not taking the medicine today means tomorrow will be worse? What if taking one dose of medicine today prevents two or three tomorrow?
These are questions not many people know to ask, let alone know the answers to.
Having had my experiences, I can then apply my experiences to Trishna’s experiences. Her experiences aren’t mine, exactly, but I would say it more like this: Say you’ve never met someone with a disability. You might make assumptions about that person. Let’s then say that you watch a documentary about them, listen to them on a podcast, or read literature by them. You understand them better, right? That’s how it’s like for me. Whenever I have my own similar experiences, I can refer to my mental process of calling up my fictional characters, and have conversations with them or observe them through similar experiences.
“How would Trishna handle a situation like this?” is a good brainstorming question.
She would do what’s necessary for the morning – pee, eat food, drink water, maybe do more – but if it were a high-pain day, then she would go back to bed to sleep for a few hours to rest. Trishna’s family would all be used to being her caretakers, if you will, so when John moves in he learns about what this all means, too. It doesn’t mean constantly annoying Trishna as she rests. What caring for someone with a physical disability like Trishna’s, and maybe me but I don’t have any wish-fulfillment through all of this [this is my burden that I must resolve on my own], what’s important is first believing that they are going through this pain.
Once you believe pain, then you can approach the empathy to figure out how to help.
John, of course, would do everything he could to help Trishna through her pain. That might involve making sure she is situated in a way that relieves pressure to her spine – to whatever degree her physical disability manifests, based on research and character analysis I’ll do over the next few years as I’ve done over the past few years. This might involve her sleeping on her back, her stomach, or with pillows situating her at an angle to relieve pressure. She might have hot packs or cold packs. She might take pain management medicine in addition to any non-pain medicine she needs to take, or might not take the pain medicine.
Every day has a different pain formula and resolution.
She might have some days where she can do some stretches in bed or outside of bed to relieve the pressure enough to move around. This is why her service dog, Pollyanna or maybe Champ as a stand-in name for her next service dog, can be helpful. Trishna might wake up and need something so the service dog can hear the distress and find someone to help. On days like this, I don’t imagine John would do much more than hang out either in their bedroom or close enough to assist when needed. The nature of their friendship/relationship as I’ve seen it over the past near-20-year period has been consistently steeped in deep empathy for each other.
I’ve even wondered about how John might want to offer switching bodies with Trishna.
For someone experiencing chronic pain like myself, I often wish I could get a day of vacation. It might be nice to get to the point where I was in say, July 2019, with full physicality and health. That day may never happen going forward, but still, it can be toxic positivity to want that. It turns quickly to hopelessness when I realize that, shit, today, I had trouble walking. Getting out of bed was hard. Not just because I’m lazy and want to sleep in. It is physically difficult for me and I’ve had to push people away that choose not to be empathetic toward me because their help is more harmful to me than good. Trishna’s situation, by comparison, is much easier – perhaps because she’s never known how it’s like to have excellent physical health, she’s never had the opportunity to tackle the world, so she’s never experienced that physical dysphoria that I experience daily. It might be nicer, though, because rather than wanting what she once had, she might just want what she might be able to do?
Assuming she has a good spine day or a few.
Having that strong degree of empathy might, then, mean that John would understand all the privilege he has by not having to deal with his disability to that degree. He has his own disability, which is a burn that takes up part of his right hand and maybe goes up his shoulder, but by comparison, limited mobility in his remaining fingers and his arm is easy. He might even tell her that at some time early into their friendship, to which she would say, no, that’s still a pain he has to deal with daily, as well. It might be easier for him to get out of bed, but it’s harder for him to grip almost anything. So there are trade-offs. As a side-note, John and Trishna popped into my head one day during my final days of high school, and it was only in the past few years that they revealed their disabilities to me.
I didn’t force them into being disabled or any kind of bullshit like that.
These internal revelations, prompted by external factors, helped me realize that I had years of learning to do before I could begin telling their story as “The Story.” That includes all elements of storytelling and writing, so I’ve been mostly on the right path of learning to write better and learning to tell stories more efficiently over the years. That I’ve had my own health problems mirroring Trishna can just help me empathize even further. On a day like today, Trishna might have had some plans – whether work, school, or recreation – that would have been side-tracked by one or two little nerves that decided to get pinched. It’s frustrating as hell for me to have somewhat wasted today, until I realize that it’s only wasted if I don’t write.
Having tied my experiences into “The Story” means today was especially not wasted.
I can empathize with Trishna in a way that I never would have dreamed to years ago – not to say that this was good for me to have my spine disability to then tell “The Story” accurately, but I did feel like I needed significantly more years of research than I do now to tell “The Story” accurately. The disability research aspect of “The Story” will still take a while, but now instead of finding people that might teach me about disabilities in general, I can reach into my own personal experiences along with talking to others that have experienced chronic pain or either short-term or long-term disability to build up the emotional toolkit both for my own living and to show how it’s like for Trishna and John to go about their days.
For one, Trishna doesn’t often get angry or mad about all of this.
She might get frustrated, especially if there was some kind of plan she wanted to do, but never would John or Trishna’s family let her feel that way for too long. John would make sure to keep any plans flexible. If they had planned to go to, say, a park for a stroll, then it would be something that John would immediately reschedule so that way Trishna wouldn’t feel bad about not being able to go. It’s in these sorts of moments where we can be mindful of our friends with disabilities and how we can still do things with them, and we can still appreciate having diligent schedules, but we can be flexible regarding the days or plans.
I don’t think they’ll often schedule for non-refundable events that often.
It’s too early for me to tell if I’ll ever go to a concert again, between my own physical health and the pandemic, but those tend to be the most of what I might consider non-refundable events that they would want to attend. If they want to see a band, the band is only in town for that scheduled performance, and not much more, so there is something to be said for pushing one’s self in responsible situations. As a concluding thought on that matter, if Trishna wanted to go to a non-refundable event, then the weeks beforehand would be all in physical preparation for that. She would do no straining situations or excessive movements, and she would do everything she could to make sure to attend the event. What would happen, then, if she wakes up the day of to some nasty spine pain? It’s unpredictable and she’s done as much as she could to plan for it? Well, she would do what she could to work through it, or if not, then cancel. It’s the sort of thing that feels bad even if you’re fully able-bodied.
I imagine they will have the emotional tools ready to work through events like that.
|Sources: The Story’s Imaginarium.|
|Inspirations: Writing about my life as I interpret it through|
|Related: Essays building “The Story.”|
|Written On: 2021 July 22 [10:08pm to 10:54pm]|
|Last Edited: 2021 July 22 [First draft; final draft for the Internet.]|