100 unqualified opinions on illness, coping, and recovery: a thread
1. Life has inherent dignity and value, you don't need to justify your worth through actions or accomplishments
2. The pain of a major setback comes from not being able to match the story that you have been telling about yourself, clinging to an old story prevents healing, and it takes patience to begin to imagine a new story
3. Even perfectly healthy people should walk away from such stories from time to time. The image that you project of yourself to others (and to yourself) is just a mask. It's very limiting to think of this mask as "the real you": the real "real you" is an unknowable black box
4. Life-changing events, in this way, can actually be an opportunity of sorts: they force you out of your complacency and give you the opportunity to reevaluate.
5. If you are a person who people rely on, and you find yourself in a position where you can no longer provide that support, it might give you the chance to see that people value you for more than just the things you provide them.
6. There is no shame in accepting support from others if you are in need. Don't deprive yourself out of pride—you will come to regret those decisions and won't gain any respect for it.
7. Enjoy the life that you are able to. I didn't learn to drive, sing with my old choir, or build a life for myself in my hometown after my health issues for the almost 2 years I was there, expecting to hop back into a tech job at any second (despite not being ready)
8. Don't let yourself get too caught in a fantasy life. You can't go back in time to buy bitcoin, you can't change how things went, don't live in regret over things you didn't have control over and can't change.
9. Even if you do get the chance to return to your old life, things are different now. You have a different perspective. Examine the things that you're telling yourself that you want, because there's a good chance that you're holding onto something that is no longer serving you.
10. There's a difference between actual security and feeling secure. Suddenly having to rely on other people (or even charity) can make you feel unsafe, but you might be surprised how much support you really have.
11. Don't put off doing the things you really want to do. I used to have this idea that I would figure out a way to make a lot of money, and then turn around and work on music/acting/comedy in my early retirement. Just a stupid strategy.
This is starting to wander a bit off-topic but I don't care, this is now 100 opinions about how you should live your life i guess
12. You don't know enough about the future to know what is a practical decision. I recently went to clown school and that has opened a surprising number of doors for me. In the absence of other information, just do what you feel like doing. Choosing a "secure" path is an illusion
13. Don't overcompensate. After my illness I was insecure about my intelligence and wandered down some strange intellectual footpaths, picked unnecessary fights. Your value doesn't come from being smart, and trying to prove that you are is pretty dumb.
14. Losing abilities you once had doesn't make you worth less. You're still loved. You're still a human being.
15. Explore the footpaths. There is a network of trails around my mother's house that I had never explored. I forced myself into a habit of wandering down a new path every day until I learned them all by hand. I tried listening to poetry, writing songs, drawing.
Appreciate life
Appreciate life
16. Create daily habits that help you heal. I appreciated "The Artists Way" and its method to get you writing every day and exploring. Later I tried running a poetry Instagram account with a new visual poem every day. Nice to have work to look back on as a symbol of progress
17. Find creative outlets for yourself to express what you're feeling, even if you never show anybody.
I never posted this but this is my favorite song that I wrote about this stuff: soundcloud.com/arcove/great-u…
Also if you want to know more about what happened to me I wrote this thing, which is like a series of narrative poems about my life leading up to my psychosis: reading.supply/@dschorno/roos…
18. Don't be afraid to put yourself out there. Don't be afraid of rejection. Don't delete every tweet you make 30 seconds after you post it.
19. There is a big debate on twitter recently about when you should be there for other people vs looking after yourself. Be there for other people as much as you can, but no further.
20. Never feel bad about watching TV, tunneling into corners of YouTube, swiping through TikTok videos, listening to dumb podcasts. Don't beat yourself up for enjoying life at the expense of whatever bullshit you "should" be doing
Ok well this is all for now, not sure if I'm doing this right but it's been fun!
21. Everyone eventually loses the ability to do the things they are good at: skills decline over time. My grandma used to pride herself on her good memory, now she can't remember anything. Everyone dies. Your talents are a flimsy base from which to derive meaning.
22. If you choose to not follow a major religion, there is no canon of preset wisdom to fall back on. You might do well to think about these questions before hard times come. What makes life meaningful?
23. Your life is affected by the world around you. It took me a long time to realize the connection between what was going on in the world during the 2016 election and the onset of my health problems. Easy to get caught up in your own personal story.
24. Make sure that the people you're going to for emotional support are in a position to support you. If you're both going through a hard time, hold up your end of the bargain and listen to their problems. It's not a competition.
25. Don't place your self-worth on being useful to other people, or relevant. Don't push yourself further than you should go.
26. Find ways to mark the passage of time. After my illness, I started making yearly playlists of songs that resonated with me and brought up specific memories. Now I can revisit those playlists to feel how far I've come
27. Pushing yourself too far is a great way to make yourself sick, and a great way to stop yourself from healing
28. Healing from your actual illness is one thing, healing from the trauma that illness caused you is entirely another. That's the part that takes work.
29. Remember to be kind to yourself and the people around you. Try not to emotionally dump on the people around you too much if you can avoid it, forgive yourself if you can't.
30. Try to surround yourself with people who can give you emotional guidance and counsel, and be choosy about who to get guidance from. In a vulnerable state you are unusually receptive to all manner of hucksters, manipulators, gurus, and cults. Preplanning goes a long way
Interesting to see some recurring themes emerging. Very long way to go to get to 100 😬
31. Writing is good. Talking to counselors is good. you need some way of digesting what has happened to you, on the path to writing a new narrative that includes it
32. That sort of "top down" approach (see praxis.fortelabs.co/the-body-keeps…) has limitations. Highly recommend exploring kinesthetic/"bottom up" approaches
33. Find poems that you can revel in, and come back to them. Listen to songs on repeat. Rewatch movies that you love
34. Going crazy is like living through a long waking dream: both in that it follows dream logic, and that nobody is really interested in hearing about it later
35. Don't bottle up emotions. Give yourself permission to cry out loud, and to laugh uproariously, and to swing between the two freely.
36. Don't identify too strongly with emotions. Even if you are crying, dont hold on to the idea that "I am sad now". Give yourself permission to move.
37. If you are feeling numb, there is probably sadness somewhere underneath. Dissociation is an effective coping mechanism, but if you are in a safe place there are ways to move past it.
38. Don't use escapism to turn away from feeling emotions out of fear. Feeling emotions is a good thing
39. Even extreme sadness, when felt without inhibition and allowed to express itself fully with sound, can feel satisfying. There's a certain quality of "release" there.
40. By letting yourself feel the emotion, you can move past it
41. Money isn't everything. Having to cut back your spending can give you some perspective. Having shitty credit is not that big of a deal.
42. Employment gaps are a real issue, but you can always just lie and say you were freelancing. Or you took a sabbatical and went traveling for a year, how exotic.
43. Lying in the face of an unjust system that punishes sick people is fine
44. Gig economy work is better anyways. If you can only work part-time, or you expect to be sick again in the future, having lots of small jobs as opposed to one big salary job offers more flexibility and security. You can pick up right where you left off
45. Life just keeps on going. and going. and going. You're never really going to get closure, or feel a resolution, like you would with a movie. Eventually you just move on.
46. There are things in life that you can never know. It takes courage to move forward into the unknown with hope
47. Being in a bad situation necessarily makes you more selfish than you normally are. Forgive others acting selfish in troubled times
48. If you can, I strongly recommend going for long walks
49. Moving past shame is a big part of recovery
50. I was resistant to the idea that going through this made me a better person, or was actually a blessing. This is something your loved ones will tell you as a way of trying to make you feel better, but it feels like they are dismissing your pain. Only kindof true in retrospect
51. Changes in circumstances and abilities require you to reinvent yourself to a certain extent
52. It's never too late to start something new. You're not too old to learn guitar.
53. Crashing out of your regular routine can ruin your sleep schedule. Try to be awake during the day, you will miss the sun
54. Most people who go through life-derailing events that push them off their course for years, especially when there is an element of shame attached like with mental health issues or substance abuse, never really tell their story.
55. Stories that I appreciated: Zen and the Art of Motorcycle Maintenence, The Bell Jar. Stories of recovery are rare and valuable. When you're going through it, It's hard to believe you can bounce back
56. Luck is the quality of being able to generate/recognize opportunities and bounce back from setbacks. Fat in the body stores energy, fat in your system stores luck
57. Hard times deplete the fat in your system: cut out weak friendships, fanciful pursuits, money reserves, etc. This can be a good thing, like how fasting leads to autophagy. You can become too fat, you can become too thin.
58. You can change your behavior to increase your luck. Strike up conversations with random strangers, notice the 5 dollar bill on the ground. Make decisions that increase optionality, don't overfit yourself to games that can change at any moment
59. The best way to prepare for the unexpected is to not try so hard
60. Life's small challenges build character, like how strength training builds muscle through microtears; but catastrophic challenges are more like a serious injury, setting back your progress until you have time to heal
61. Recovery is an extremely lonely process.
62. It's easy to feel like a broken record, that people are getting tired of hearing you complain (especially if they are!). You start getting worried people to think you're narcissistic, that you only ever talk about yourself.
63. I was surprised by this prompt and more surprised that people seem to like this thread.
64. It's probably impossible to have enough support, someone to be there for you 24/7. There are times when you are forced to be alone with your thoughts, which is the last thing you want.
65. Support groups probably work by giving you an outside perspective on your illness, and let you see how people further along have reconstructed their personal life narratives.
66. That idea is consistent with anecdotes I've heard about support groups not being helpful: they can't work if you can't imagine yourself in their shoes (eg. if you get Parkinson's in your 30s, and everyone in the group is >60 talking about the joys of early retirement)
67. Then again, they are just a nice opportunity to find people who "get it" and to build social connections generally.
68. The purpose of crisis hotlines is to provide emotional support to people, a "listening ear". Given that the whole meta around it (and therapy) is about not offering opinions or suggestions, it is surprising how much hearing themselves talk through their problems helps people.
69 (😎). Feeling useful is such a huge motivator for people. Like how 3-year-olds insist on doing everything themselves, or how old people sometimes die really quickly after retirement. Not being helpful, or useful, or "needed" by others is very painful.
70. Big events delineate the passage of time in general, but true of recovery as well. It might not feel like it's over until you move to a different city, start a new job, etc.
71. A big event in my recovery was when I was able to focus enough to read a (non audio) book: Mary Oliver's poetry handbook
(Went off on a side tangent about music and millennials. I'm never going to make it to 100 takes if I don't focus 😠)
72. Humility is a virtue, and is something that you learn through crashing into personal limitations. (In the same way that, say, raising kids teaches you patience)
73. If you are outside of a coherent personal narrative, you have no way of organizing your perception of time
74. (this is subtly different from a point I made before) Traumatic illness experiences are something you necessarily go through alone, surrounded by loved ones you may be.
75. Wasting $300 on shoes now is $300 you don't have to pay your rent with in hard times. On the other hand, I somehow never regret having spent money if it actually seemed worth it at the time: it's not a waste if you really want the shoes.
76. Conspicuously wasting money is a terrible way to try to convince yourself that you are more secure than you are. Waste money to signal to other people, not to yourself.
77. Just like, chill out man.
78. Try to get some fresh air at least once every day, especially in the morning. A morning walk sets the right tone for a good day.
79. My illness was extremely hard on the family members who supported me, they all seem to have a mild PTSD about the whole thing. Something I regret more than what happened to me personally.
80. Podcasts are a great way to simulate having friends and hanging out with people/shooting the shit. On tap, ready whenever you are feeling lonely.
81. The best place to listen to a podcast is walking by yourself at night. The lack of light makes your mind focus on the sounds more clearly, and there's something mysterious and romantic about it (with a slight hint of danger).
82. I tried to start a podcast that captured this feeling where I would walk at night with people and record conversations about life and meaning with a field recorder. Did that 3 times but apparently people get dumber at night. The one I recorded at 11am was much better.
83. Over the course of my recovery, I found it very challenging to watch movies. Plots are driven by conflict, and at the time I found that conflict to be far too stressful. Even now I can only sit through a movie in a theater context—being able to pause means being able to stop
84. An intensified feeling of sympathetic embarrassment also stopped me from watching sitcoms
85. The way to read poetry is to forget everything you learned in school about it. Don't try to dig for hidden meanings, just get a surface-level impression. Only dig deeper if you like the poem and feel curious.
86. Getting on disability/social assistance in Canada is way too complicated for people who are actually sick. I left about $14,000 CAD on the table because for a year I couldn't focus enough to fill out the forms
87. Part of that was also just a feeling of deep shame in not being able to support myself. If it's something you need to work on, being able to accept generosity from others is a skill that requires generosity in you.
88. Accepting generosity is uncomfortable because it makes you feel beholden to others and lowers your relative status—they are doing you a favor that you need to pay back. Letting others be generous and noble towards you is a gift you can give.
89. Part of that has to do with my take on positive masculinity for myself at the time. The idea that i could strive to be a good person, a moral rock for others to lean on. Reliable, Honorable, Trustworthy.
90. In the course of my sickness I violated those masculine ideals, and for a while I thought that made me a bad person. I was deeply ashamed of my actions that I didn't have control over.
91. Given the non-zero chance of a relapse, I have had to reimagine what I can provide to other people and what an ideal version of myself looks like. Part of that is just trying to stress out about it less.
92. I used to put a lot of pressure on myself to try to make a good tech salary, to provide security for my family, somewhat at the expense of pursuing my own true goals. Even after I was well enough to work again I tried to return to that path, and did for a while.
93. Sacrificing for other people hurts them; they bear the burden of your quiet discontent. Taking yourself into account, and trying to follow your true path, is a requirement of being truly generous.
94. Debts create bonds between people. Giving people the gift of owing them a favor gives them more ambient luck they can draw from when they really need it. Having debts and repaying those debts at a casual tempo builds trust.
95. Try not to withdraw from the people you are indebted to. Be vulnerable. Repay their kindness with love.
96. It took me a long time to learn how to laugh again after I was sick. It took me a long time to string together jokes. Good humor is such a gift to the people around you.
97. Being able to look back on things in your life that have been painful, and learning how to find humor and kindness in them, is such an important skill.
98. Being able to share your experiences with others is important. Being a voice to guide other people through their own troubled times is valuable. Doing that while keeping a sense of humor is incredibly hard.
I've written the sad songs, the sad stories. I'm trying to grow.
I've written the sad songs, the sad stories. I'm trying to grow.
99. @vgr said on a podcast our society is facing the existential risk of complete narrative collapse—from personal stories to grand narratives. Everyone is trying to make sense of their stories in times like this.
100. It is up to all of us to do this work: to make sense of our stories, to share them. Your voice is valuable.
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