12 Year Anniversary: Sending Hope and Stories to my Younger Self (and you).

[gobigorgohome]

Hi fellow HPPDers-

 

I haven't been on here in ages, but an upcoming medical procedure had me googling "HPPD + [insert mediation]", as I'm sure you've all gotten used to doing, to make sure I wouldn't accidentally set myself back. And I found myself back here, after so long!

This post is to say: keep going.

In the twelve years since I made my first post, here are some highlights:

• I got into therapy and learned new thought patterns, relational skills, and re-shifted my values in ways that radically improved my life (and generally made me a more open and loving person).
• Started a small creative business, that while incredibly modest, sustains me to this day. Pushed through dry-spells, Covid, a buttload of self-doubt, and the annual horror of freelancer taxes.
• My ability to read came back, my brain exploding with the technicolor of sustained concentration on beautiful, soul-expanding prose. Early on, I couldn't read due to brain fog, depersonalization (I'd finish a passage and think: what would I feel about this? No idea!) visual disturbances, etc. I could not tell you the exact date it returned, only that this most precious thing bloomed in me again, changed but present.
• Being criminally thrifty, I've traveled the world, spending months abroad in places where I have adored being a curious guest. I've resonated with strangers, wandered ancient alleys, let my sense be overcome with the beauty of this planet and the people in it
• I've done a stupid amount of recreational adult sporting, ran up any mountain I could get my feet on (many!), formed and lost deep friendships, been an asshole and been a divinely good friend
• Started graduate school in my dream-field, acquiring little grants and accolades and pushes forward along the way, feeling my soul sparkle alive whenever I'm aligned with what I crave doing most (not pictured: years of learning and rejection)
• Bought a tiny cabin of a house with pine trees, where I can host game nights with the group of weirdos I've made my family
• Starting teaching teen creative classes that have lit-up my soul with wonder, frustration, magic, hope
• Through trial and error and countless appointments and dismissals and bad advice and condescension, gotten genuine medical care, and found the right medication combo to keep this sinking rainbow ship of a brain afloat (for now)
• Fell in love...a few times, and am now connected with my (unreasonably gorgeous) soul-partner for this life

Also? In the past twelve years:

• My visual symptoms have remained more or less the same. I am permanently (for now) experiencing visuals most people (but not you beauties) couldn't dream of.
• Suffered from other chronic health conditions, including Long Covid and chronic fatigue.
• Been diagnosed with ADHD (a post-HPPD reality and identity for me), suffered stunted opportunities due to physical and mental limitations 
• Lived with anxiety--will the DP / DR come back if I take this needed antibiotic? Will the headlights in this rental car be strong enough for me to see at night? Will this or that activity / food / stimulant / depressant flare up my brain fog? Is this water safe? Is there mold here that'll worsen my neurological symptoms? Is someone smoking weed nearby that could throw me into a full-blown flashback? Is there some sort of cocoon I can crawl inside, since my body insists on hypersensitivity to unknown foreign materials?
• Had bad weeks, bad months, bad years...
• But they were still sprinkled with absolute stardust, moments of intense, astounding flickers of beauty, kindness, connection, strangeness, kismet, gentleness, surprise, silliness. Once a good memory hits me, enters me, washes over me and changes me, there is nothing in my past I would change, as it would rob me of this insane gift, or an insight that's invaluable to making me a richer, fuller, more satiated and compassionate human being
• Evolved into a person I'm not always proud of, but into a person I definitely want to nurture, tend to, and unleash, to allow myself to enjoy this one, singular joyride I get in this body
• Accepted my (insane) personality, the beauty of my exact friendships and lovers, the honor and quest of building good community in my strange corner of the planet.
• Don't get me wrong--I'll lose hours to scrolling videos, harboring resentments, feeling self-pity, etc. But underlying all of it is a heartbeat declaring me precious, irreplaceable, a person that must continue living and growing and loving and being stupid and making amends as long as I can, bizarre perceptual disorders and fading body and all.
• Found inexhaustible healing (and just plain surprising, soul-jolting fun) through friendships, new and old, and the natural world, from tiny clovers beside the sidewalk, the squirrels running a mafia in my backyard, to intense overnight wilderness trips at elevations that rob your breath and coordinates with a non-zero amount of grizzlies.
• Never regretted getting outside of myself and my own head, and focusing on making someone else's day or self-thoughts pure gold

 

I cannot understand the pain, suffering, and fucked-up scenarios so many of you have been through or are in. Likely your pain started long before your HPPD, and maybe you find yourself trapped in a living situation, draining friendships, career, debt burden (I'm there with you), verbally or emotionally or physically abusive relationship with parents or partners, lack of access to medical care, depressive disorders, cruel bosses and teachers...my god, the way this world unravels us, takes the hopeful child in us and beats us into the earth. If this is you, and now you've got HPPD / DR / DP / night terrors / insomnia on top of it: I am so sorry you feel trapped in a nightmare you'd give anything to wake up from.

All I can say is: exactly you is precious, RIGHT NOW. Absolutely, keep pushing for relief and the right medical care (my decade has involved a ton of treatment-seeking, mostly for other conditions) but please see the chance to live your exact life as non-negotiable, whatever absolute bat-shit chaos is reigning inside the beautiful noggin of yours. Yes, care for yourself--by respecting and accepting your limitations--but also, push toward that blueprint curled up inside of only you. The one telling you to reach out to that one neighbor you find funny / wise / cute, to look into that community college class on entomology, to sign up for pottery, to say YES to camping with friends (or to go out, make those friends through ten thousand agonizing dates and clubs and coffee dates that are worth it), to haunting your library and absorbing all the poetry you can, to knitting that scarf for your cat, to inviting that mentor into your life...whatever it is that makes you tick is still there. During my long-lasting depersonalization, I decided I was an alien actor, play-acting myself...and even if I had no idea how I actually felt, eventually, slowly and then all at once, I returned to take on and embody the role.

I am so sorry this shit has happened to you. Nobody needs this. It's *insanely* rare--you are not stupid for having this, whether you took a prescribed medication once or put lots of interesting things into your body for years. You got fucking unlucky, like all beautiful souls do in uncontrollable ways (grief, death,  job / purpose loss, ecological destruction of your home, systemic oppression...the possible list of *shit to make life hurt* extends beyond my poor imagination, and you likely check many boxes). Your shit-hand includes HPPD- what other cards are you holding? Can you sing? Do karaoke, you icon. Do people like your eyes? Get a thrill from making eye-contact with your people. Go out and feel like shit and have things go really, really poorly, then try again. 

Ten years on I can say fully: I am so happy I'm alive. I could cry rivers from the gifts I've been given. My regrets have nothing to do with my HPPD,  and everything to do with my choices, especially ones of kindness and bravery. Other than when starting new medications, I do not think about my HPPD / considerable perceptional disturbances at all. You're brand new, and you're saying: NEVER could I forget this hell-scape! Darlings: get in the ring and fight for your life. You may be nothing like me and get cured or remissions like so, so, so many do-- no matter what, in ways however small, life your life now. Think of your 12 year post, and what you want it to say. There are bullet points I wish I could have added (being a better human to my family, mentoring young athletes / artists, more development in my career / being a kick-ass, romance-novel-worthy partner) so now I get to dive into some of those.

Keep going, precious ones. Only you can be you, including now. If I could talk to myself twelve years ago, I would say, "Oh you sweet dumb-ass, it's going to get so much worse, and it's going to get so much better. Your dreams will get shattered and come true. Your body will fail and crumble in ways you haven't yet imagined, and your body will experience sights and connection you haven't yet imagined. Your friends and family will suffer. You will suffer. It ain't roses. Go get it. The story is waiting for you. Err toward love and bravery and yeses, forgive yourself for how much time you'll spend recovering on the floor and the couch with a screen at your face, but whatever you do, don't leave the pages blank."

Edited August 17 by gobigorgohome

[AF44]

9 hours ago, gobigorgohome said:

Hi fellow HPPDers-

 

I haven't been on here in ages, but an upcoming medical procedure had me googling "HPPD + [insert mediation]", as I'm sure you've all gotten used to doing, to make sure I wouldn't accidentally set myself back. And I found myself back here, after so long!

This post is to say: keep going.

In the twelve years since I made my first post, here are some highlights:

• I got into therapy and learned new thought patterns, relational skills, and re-shifted my values in ways that radically improved my life (and generally made me a more open and loving person).
• Started a small creative business, that while incredibly modest, sustains me to this day. Pushed through dry-spells, Covid, a buttload of self-doubt, and the annual horror of freelancer taxes.
• My ability to read came back, my brain exploding with the technicolor of sustained concentration on beautiful, soul-expanding prose. Early on, I couldn't read due to brain fog, depersonalization (I'd finish a passage and think: what would I feel about this? No idea!) visual disturbances, etc. I could not tell you the exact date it returned, only that this most precious thing bloomed in me again, changed but present.
• Being criminally thrifty, I've traveled the world, spending months abroad in places where I have adored being a curious guest. I've resonated with strangers, wandered ancient alleys, let my sense be overcome with the beauty of this planet and the people in it
• I've done a stupid amount of recreational adult sporting, ran up any mountain I could get my feet on (many!), formed and lost deep friendships, been an asshole and been a divinely good friend
• Started graduate school in my dream-field, acquiring little grants and accolades and pushes forward along the way, feeling my soul sparkle alive whenever I'm aligned with what I crave doing most (not pictured: years of learning and rejection)
• Bought a tiny cabin of a house with pine trees, where I can host game nights with the group of weirdos I've made my family
• Starting teaching teen creative classes that have lit-up my soul with wonder, frustration, magic, hope
• Through trial and error and countless appointments and dismissals and bad advice and condescension, gotten genuine medical care, and found the right medication combo to keep this sinking rainbow ship of a brain afloat (for now)
• Fell in love...a few times, and am now connected with my (unreasonably gorgeous) soul-partner for this life

Also? In the past twelve years:

• My visual symptoms have remained more or less the same. I am permanently (for now) experiencing visuals most people (but not you beauties) couldn't dream of.
• Suffered from other chronic health conditions, including Long Covid and chronic fatigue.
• Been diagnosed with ADHD (a post-HPPD reality and identity for me), suffered stunted opportunities due to physical and mental limitations 
• Lived with anxiety--will the DP / DR come back if I take this needed antibiotic? Will the headlights in this rental car be strong enough for me to see at night? Will this or that activity / food / stimulant / depressant flare up my brain fog? Is this water safe? Is there mold here that'll worsen my neurological symptoms? Is someone smoking weed nearby that could throw me into a full-blown flashback? Is there some sort of cocoon I can crawl inside, since my body insists on hypersensitivity to unknown foreign materials?
• Had bad weeks, bad months, bad years...
• But they were still sprinkled with absolute stardust, moments of intense, astounding flickers of beauty, kindness, connection, strangeness, kismet, gentleness, surprise, silliness. Once a good memory hits me, enters me, washes over me and changes me, there is nothing in my past I would change, as it would rob me of this insane gift, or an insight that's invaluable to making me a richer, fuller, more satiated and compassionate human being
• Evolved into a person I'm not always proud of, but into a person I definitely want to nurture, tend to, and unleash, to allow myself to enjoy this one, singular joyride I get in this body
• Accepted my (insane) personality, the beauty of my exact friendships and lovers, the honor and quest of building good community in my strange corner of the planet.
• Don't get me wrong--I'll lose hours to scrolling videos, harboring resentments, feeling self-pity, etc. But underlying all of it is a heartbeat declaring me precious, irreplaceable, a person that must continue living and growing and loving and being stupid and making amends as long as I can, bizarre perceptual disorders and fading body and all.
• Found inexhaustible healing (and just plain surprising, soul-jolting fun) through friendships, new and old, and the natural world, from tiny clovers beside the sidewalk, the squirrels running a mafia in my backyard, to intense overnight wilderness trips at elevations that rob your breath and coordinates with a non-zero amount of grizzlies.
• Never regretted getting outside of myself and my own head, and focusing on making someone else's day or self-thoughts pure gold

 

I cannot understand the pain, suffering, and fucked-up scenarios so many of you have been through or are in. Likely your pain started long before your HPPD, and maybe you find yourself trapped in a living situation, draining friendships, career, debt burden (I'm there with you), verbally or emotionally or physically abusive relationship with parents or partners, lack of access to medical care, depressive disorders, cruel bosses and teachers...my god, the way this world unravels us, takes the hopeful child in us and beats us into the earth. If this is you, and now you've got HPPD / DR / DP / night terrors / insomnia on top of it: I am so sorry you feel trapped in a nightmare you'd give anything to wake up from.

All I can say is: exactly you is precious, RIGHT NOW. Absolutely, keep pushing for relief and the right medical care (my decade has involved a ton of treatment-seeking, mostly for other conditions) but please see the chance to live your exact life as non-negotiable, whatever absolute bat-shit chaos is reigning inside the beautiful noggin of yours. Yes, care for yourself--by respecting and accepting your limitations--but also, push toward that blueprint curled up inside of only you. The one telling you to reach out to that one neighbor you find funny / wise / cute, to look into that community college class on entomology, to sign up for pottery, to say YES to camping with friends (or to go out, make those friends through ten thousand agonizing dates and clubs and coffee dates that are worth it), to haunting your library and absorbing all the poetry you can, to knitting that scarf for your cat, to inviting that mentor into your life...whatever it is that makes you tick is still there. During my long-lasting depersonalization, I decided I was an alien actor, play-acting myself...and even if I had no idea how I actually felt, eventually, slowly and then all at once, I returned to take on and embody the role.

I am so sorry this shit has happened to you. Nobody needs this. It's *insanely* rare--you are not stupid for having this, whether you took a prescribed medication once or put lots of interesting things into your body for years. You got fucking unlucky, like all beautiful souls do in uncontrollable ways (grief, death,  job / purpose loss, ecological destruction of your home, systemic oppression...the possible list of *shit to make life hurt* extends beyond my poor imagination, and you likely check many boxes). Your shit-hand includes HPPD- what other cards are you holding? Can you sing? Do karaoke, you icon. Do people like your eyes? Get a thrill from making eye-contact with your people. Go out and feel like shit and have things go really, really poorly, then try again. 

Ten years on I can say fully: I am so happy I'm alive. I could cry rivers from the gifts I've been given. My regrets have nothing to do with my HPPD,  and everything to do with my choices, especially ones of kindness and bravery. Other than when starting new medications, I do not think about my HPPD / considerable perceptional disturbances at all. You're brand new, and you're saying: NEVER could I forget this hell-scape! Darlings: get in the ring and fight for your life. You may be nothing like me and get cured or remissions like so, so, so many do-- no matter what, in ways however small, life your life now. Think of your 12 year post, and what you want it to say. There are bullet points I wish I could have added (being a better human to my family, mentoring young athletes / artists, more development in my career / being a kick-ass, romance-novel-worthy partner) so now I get to dive into some of those.

Keep going, precious ones. Only you can be you, including now. If I could talk to myself twelve years ago, I would say, "Oh you sweet dumb-ass, it's going to get so much worse, and it's going to get so much better. Your dreams will get shattered and come true. Your body will fail and crumble in ways you haven't yet imagined, and your body will experience sights and connection you haven't yet imagined. Your friends and family will suffer. You will suffer. It ain't roses. Go get it. The story is waiting for you. Err toward love and bravery and yeses, forgive yourself for how much time you'll spend recovering on the floor and the couch with a screen at your face, but whatever you do, don't leave the pages blank."

Absolutely beautiful