Read on Twitter
1/
Resonated w/ this video by @EmericanJohnson.
I hesitate to speak about my disabilities. My recent years have been relatively comfortable, content. I don't get SSI...
But disability does not = suffering. It's not defined by State.
I'll speak! Thread!
Resonated w/ this video by @EmericanJohnson.
I hesitate to speak about my disabilities. My recent years have been relatively comfortable, content. I don't get SSI...
But disability does not = suffering. It's not defined by State.
I'll speak! Thread!
2/
1st, on privilege: I think I'm well tuned to body-awareness & practiced in communication. Privilege most aren't afforded. Another time I'll break down my privilege.
The point: vertical society (capitalism) embeds privilege (ableist). I fight for diverse, horizontal, society.
1st, on privilege: I think I'm well tuned to body-awareness & practiced in communication. Privilege most aren't afforded. Another time I'll break down my privilege.
The point: vertical society (capitalism) embeds privilege (ableist). I fight for diverse, horizontal, society.
3/
Onward:
My disabilities are mostly hidden/misunderstood. I've learned to vocalize attention to them w/ people I'm close to, but it's still hard.
The effects on my life range from concrete & straightforward to abstract & not quantifiable. In this thread I'll detail some of it.
Onward:
My disabilities are mostly hidden/misunderstood. I've learned to vocalize attention to them w/ people I'm close to, but it's still hard.
The effects on my life range from concrete & straightforward to abstract & not quantifiable. In this thread I'll detail some of it.
4/
Scoliosis. It's not coincidence I start here. It's the least invisible, and I'm already self conscious of the skeptical thoughts that will arise in ppl if I start with a disability that I can't provide visual evidence for!
I have ~55° scoliosis curve. Relatively significant:
Scoliosis. It's not coincidence I start here. It's the least invisible, and I'm already self conscious of the skeptical thoughts that will arise in ppl if I start with a disability that I can't provide visual evidence for!
I have ~55° scoliosis curve. Relatively significant:
5/
In xray it's pretty wild! It's an S curve & my head ends up pretty centred over my hips. Fortunate for me.
Some ways scoliosis impacts me atm:
- Can only sleep in a few specific positions
- Prone to back fatigue
- Prone to severe neck pain
- Susceptible to sciatic nerve pain
In xray it's pretty wild! It's an S curve & my head ends up pretty centred over my hips. Fortunate for me.
Some ways scoliosis impacts me atm:
- Can only sleep in a few specific positions
- Prone to back fatigue
- Prone to severe neck pain
- Susceptible to sciatic nerve pain
6/
Lucky for me, my circumstances allow for me to structure my life around my disabilities & I'm empowered to minimize all those impacts. My cervical pillow helps me sleep better, VR (esp. standing VR) allows me to engage w/ art & have fun in a way that's comfortable & active.
Lucky for me, my circumstances allow for me to structure my life around my disabilities & I'm empowered to minimize all those impacts. My cervical pillow helps me sleep better, VR (esp. standing VR) allows me to engage w/ art & have fun in a way that's comfortable & active.
7/
Class privilege meant my parents could pay for Trager physical therapy. Helped me learn to relax my body. Privilege has enabled me to sustain on part time min wage work. (Many kinds of work, esp. full time, are ruled out by my scoliosis. Unless I'm cool w/ eternal pain!
).
Class privilege meant my parents could pay for Trager physical therapy. Helped me learn to relax my body. Privilege has enabled me to sustain on part time min wage work. (Many kinds of work, esp. full time, are ruled out by my scoliosis. Unless I'm cool w/ eternal pain!
).
8/
My scoliosis is a major reason why I stopped creating music on PC DAWs. Using these tools result in severe neck pain.
Writing this thread for 4 hours: moderate neck pain.
It's a matter of body->tool interfacing.
I still create music, in (mostly VR) apps that are comfy for me!
My scoliosis is a major reason why I stopped creating music on PC DAWs. Using these tools result in severe neck pain.
Writing this thread for 4 hours: moderate neck pain.
It's a matter of body->tool interfacing.
I still create music, in (mostly VR) apps that are comfy for me!
9/
Another disability I experience: DSPD. Delayed Sleep Phase Disorder.
This is one of those where most ppl look at you like you're a fool, or looking for pity. Or they 'know' how to fix it, or assume it's not real.
DSPD is particularly misunderstood. I'll try helping w/ that.
Another disability I experience: DSPD. Delayed Sleep Phase Disorder.
This is one of those where most ppl look at you like you're a fool, or looking for pity. Or they 'know' how to fix it, or assume it's not real.
DSPD is particularly misunderstood. I'll try helping w/ that.
10/
DSPD is "a chronic dysregulation of a person's circadian rhythm (biological clock), compared to those of the general population and societal norms."..."No cure is known" https://en.wikipedia.org/wiki/Delayed_sleep_phase_disorder
Like any disability, there are a range of experiences, and I speak from my own.
DSPD is "a chronic dysregulation of a person's circadian rhythm (biological clock), compared to those of the general population and societal norms."..."No cure is known" https://en.wikipedia.org/wiki/Delayed_sleep_phase_disorder
Like any disability, there are a range of experiences, and I speak from my own.
11/
I think mine developed last year of high school (typical for DSPD).
Yes I've tried "shift your sleep schedule! It's just a habit!"
In fact for several years I was forced into an attempted 'normal' schedule. Before I recognized the disability & reorganized my life.
I think mine developed last year of high school (typical for DSPD).
Yes I've tried "shift your sleep schedule! It's just a habit!"
In fact for several years I was forced into an attempted 'normal' schedule. Before I recognized the disability & reorganized my life.
12/
I slept through morning classes, failing one or two purely b/c I couldn't wake up for them. I'd frequently skip sleeping. I worried if I let myself fall asleep when my body wanted (typically 5-7am) then I'd sleep through my 9am alarms.
Was the same for 9-5 work I tried.
I slept through morning classes, failing one or two purely b/c I couldn't wake up for them. I'd frequently skip sleeping. I worried if I let myself fall asleep when my body wanted (typically 5-7am) then I'd sleep through my 9am alarms.
Was the same for 9-5 work I tried.
13/
The whole ordeal exacerbated depression & anxiety I was struggling with at the time. But depression/anxiety are not the CAUSE of my sleep disorder (another common misconception). I haven't been depressed for ~6 yrs now & my anxiety is significantly reduced. I still have DSPD.
The whole ordeal exacerbated depression & anxiety I was struggling with at the time. But depression/anxiety are not the CAUSE of my sleep disorder (another common misconception). I haven't been depressed for ~6 yrs now & my anxiety is significantly reduced. I still have DSPD.
14/
Like my scoliosis, with the aid of privilege I've been able to structure my life around my DSPD. 1pm shift is the earliest I work (and still challenging. When not subjected to a schedule, I typically WAKE between 2pm-3pm).
My life operates mostly in MY hours. I feel healthy.
Like my scoliosis, with the aid of privilege I've been able to structure my life around my DSPD. 1pm shift is the earliest I work (and still challenging. When not subjected to a schedule, I typically WAKE between 2pm-3pm).
My life operates mostly in MY hours. I feel healthy.
15/
When I listen to my body, I sleep well. When I try to force a 'normal' schedule, I don't sleep properly & get very stressed at night. I can force a 9-5 job for ~2 weeks before I have to quit. I held a 1-9pm job for 4 years.
I can't participate in 'business hours' society.
When I listen to my body, I sleep well. When I try to force a 'normal' schedule, I don't sleep properly & get very stressed at night. I can force a 9-5 job for ~2 weeks before I have to quit. I held a 1-9pm job for 4 years.
I can't participate in 'business hours' society.
16/
Tying back to @EmericanJohnson's video, I also struggle w/ brain fog. His ties to a thyroid condition. Mine ties, as far as I currently understand, to allergies & food sensitivities. These trigger abnormal immune response: Ear/nose/throat congestion & associated 'brain fog'.
Tying back to @EmericanJohnson's video, I also struggle w/ brain fog. His ties to a thyroid condition. Mine ties, as far as I currently understand, to allergies & food sensitivities. These trigger abnormal immune response: Ear/nose/throat congestion & associated 'brain fog'.
17/
Brain fog at the most extreme I've felt is easier to talk about b/c the effect on me was immediate and obvious compared to the kind of passive 'brain soup' (also very impactful, but much harder to define or notice).
The worst was before I started allergy shots 2-3 yrs ago.
Brain fog at the most extreme I've felt is easier to talk about b/c the effect on me was immediate and obvious compared to the kind of passive 'brain soup' (also very impactful, but much harder to define or notice).
The worst was before I started allergy shots 2-3 yrs ago.
18/
I'd made significant efforts by then to reduce dust presence in my room. But I was spending time with a partner 2-3 days a week. When I was lying on the bed (dust mite zone) it would be like I was injected w/ tranquilizer.
Even if I tried to move my body, even if I pinched
I'd made significant efforts by then to reduce dust presence in my room. But I was spending time with a partner 2-3 days a week. When I was lying on the bed (dust mite zone) it would be like I was injected w/ tranquilizer.
Even if I tried to move my body, even if I pinched
19/
myself over and over, my eyes would get extremely heavy and before I knew it I was asleep.
It's amusing but it also sucked. No it did not help my DSPD, I didn't get a full sleep when this happened, it was a forced nap that interrupted healthy sleep.
This wasn't infrequent.
myself over and over, my eyes would get extremely heavy and before I knew it I was asleep.
It's amusing but it also sucked. No it did not help my DSPD, I didn't get a full sleep when this happened, it was a forced nap that interrupted healthy sleep.
This wasn't infrequent.
20/
It happened almost any time I lay on that bed. Yeah it made bed-centric physical intimacy rather challenging!
I was able to effectively confirm that the cause was my allergies (doctors didn't see the correlation) b/c it VERY clearly improved after my allergy shots kicked in.
It happened almost any time I lay on that bed. Yeah it made bed-centric physical intimacy rather challenging!
I was able to effectively confirm that the cause was my allergies (doctors didn't see the correlation) b/c it VERY clearly improved after my allergy shots kicked in.
21/
Experiencing that more extreme tranquilizing effect helped me identify my brain fog. I experience brain fog regularly. Especially before I started allergy shots, and especially in other people's (dusty) rooms. Now mostly brought on by foods - verified by avoiding said foods!
Experiencing that more extreme tranquilizing effect helped me identify my brain fog. I experience brain fog regularly. Especially before I started allergy shots, and especially in other people's (dusty) rooms. Now mostly brought on by foods - verified by avoiding said foods!
22/
Whereas the full 'tranquilization' effect was effectively my brain being forced to power down for some time, the 'brain fog' I experience is the same thing just instead of powering down completely, it powers down into 'reduced functionality mode'.
Describing it beyond that,
Whereas the full 'tranquilization' effect was effectively my brain being forced to power down for some time, the 'brain fog' I experience is the same thing just instead of powering down completely, it powers down into 'reduced functionality mode'.
Describing it beyond that,
23/
I would defer to Emerican's description which feels very accurate to my experience as well. "It's like your head is filled with soup, and all of your thoughts have to like... PUSH themselves through this soup into the forefront of your consciousness."
"It sucks".
It SUCKS.
I would defer to Emerican's description which feels very accurate to my experience as well. "It's like your head is filled with soup, and all of your thoughts have to like... PUSH themselves through this soup into the forefront of your consciousness."
"It sucks".
It SUCKS.
24/
With allergies improved, I've experienced significant reduction of brain fog & congestion. I'm still plagued with affecting "food sensitivities": https://docs.google.com/document/d/1_Ik3DvKfv6TeAM2J_5nPrIS6L6CHBiLyAizCvTu4cK4/edit?usp=sharing
...
Oh! 25 tweets is thread limit. Time to wrap up I guess. Skipping anxiety & IBS, quick conclusion!
With allergies improved, I've experienced significant reduction of brain fog & congestion. I'm still plagued with affecting "food sensitivities": https://docs.google.com/document/d/1_Ik3DvKfv6TeAM2J_5nPrIS6L6CHBiLyAizCvTu4cK4/edit?usp=sharing
...
Oh! 25 tweets is thread limit. Time to wrap up I guess. Skipping anxiety & IBS, quick conclusion!
25/
Takeaway suggestion: Build communication upon a foundation of interpersonal TRUST & PROACTIVE LISTENING.
Happy to chat further on all of this!
Tagging some who might like seeing this thread.
@SFdirewolf @slooterman @twitchyspoonie @realLandsEnd @earnestattempts @javitrino
Takeaway suggestion: Build communication upon a foundation of interpersonal TRUST & PROACTIVE LISTENING.
Happy to chat further on all of this!
Tagging some who might like seeing this thread.
@SFdirewolf @slooterman @twitchyspoonie @realLandsEnd @earnestattempts @javitrino
